How Lyme effects us

I just read the comment on http://www.first-do-no-harm.com/2009/06/tick-control-to-control-lyme-disease.html. It really tells the story of Chronic Lyme. Everyone finds comfort and meaning in different ways. Not everyone has access to treatment for a variety of reason. Not everyone responds to treatment. The only thing we can effect is how we feel about our Lyme. How we feel about it is directly affected by how the Lyme affects our brain.

I find comfort in:
1.Jesus says that he will use our suffering to bring people to him. I can't think of anything I would like more.
2. My hospice work and prayer groups. Praying for others brings me resolve. I helps me see that everyone has suffering.
3. The laughter and love of my children
4. The love of my husband
5. Ice Cream

The hard core survival list is here:
http://www.first-do-no-harm.com/2009/06/lyme-happy.html

Deadly Dosing and Antibiotic Resistance in Lyme

The tick born disease you have may already be Doxycycline resistant. It may have been that way the day you contracted it. You – one individual - taking 8 months of Doxycycline will not create new resistant microbes. Nor will 20,000 people a year.
The villain that produces antibiotic resistance in humans is not taking an antibiotic prescription according to the instructions; for example, not taking all of a prescription is the biggest culprit. Under dosing is the biggest problem - not over consumption. Patients begin to feel better and stop taking the drug only to end up at the doctor’s office a week later with the same illness but in a new drug resistant form. 3 weeks of doxycycline for Lyme is under dosing and could lead to antibiotic resistance in people trying to treat Lyme. You can stop this practice by insisting that you doctor follow the ILADS guidelines of 6 weeks. If your doctor refuses get another doctor. Once you receive the correct medication – take it as directed. Until the bottle is empty.

We have enjoyed a 70 year "good health" window in the US that is unusual from historical perspective. Prior to the 1940 people around the world where relentless about improving the cleanliness of their environment and avoiding contaminants. We have become “lazy” in our vigilance against disease by relying to heavily on antibiotics. Instead of practicing ‘clean agricultural’ we just dose our livestock with antibiotics. You can be exposed to drug-resistant germs in the same way you get other infections, through: contaminated food, water or soil, unsafe sexual practices, contact with infected people or animals; and during treatment in a clinic or hospital. It’s time that we as a society become more vigilant. Literally, in our own back yard, there are many things that each of us can do to prevent tick population from exploding. Sure you are only one person but if we all start doing something than we can make a difference. The doctors and the lawyers will not stop this disease. The answers will come from the sick (like me) and the few good Samaritans that help us.

I understand the IDSA concern about antibiotic resistance and it is very real. But let’s be clear about how antibiotic resistance happens. Doxycycline is used in farming to reduce infection. Many Doxycycline resistant microbes have developed in farms across the country. Drug-resistant Salmonella is one example of a bacteria that is already a serious problem. You can discourage this practice by eating foods grown without antibiotics.

As Lyme patients we need to respect that there is an end to the antibiotic road. People with Lyme end up in the hospital at some point and we may be exposed to MRSA. In that event we will need an immune system that can respond to antibiotics. If you are on IV antibiotic you are ready near the end of that antibiotic road. You need to take special care. Baby your arm do not irritate the IV and create a space for infection. If you develop and infection in your IV than it is most likely resistant to the antibiotic delivered via IV. Take responsibility. If you know that you are a person that only follows the doctor’s order when it suits you – don’t do IV therapy.

Side note – do not confuse antibiotic resistance with antibiotic overdose. Overdose usually causes, nausea, vomiting. poor muscle control and seizures. Seek help immediately if you are on high does of antibiotics and develop these symptoms.

Tick Control to Control Lyme Disease

Controlling Ticks in North Carolina

First line of defense is wear bug spray. The next recommendation is 'light colored clothes'? That is pretty weak, right? What if you really want to control ticks on your property.

What is better than bug spray? Remember bug spray only repels tick but does not kills ticks. So you still have a problem.

"flowers of sulfur": an over the counter, but often is kept behind the counter. Use like powder. Very inexpensive. Does not stain or leave a sticky residue.

Sevin Dust for the Yard. It looks like snow and is rather unattractive but better than getting Lyme.

Dannux 4-Poster Deer Treatment Bait Station similar technology available for rodents called Maxforce Tick Management System.

Keep your grass mowed your neighbors will love it and the ticks will hate it

Remove leaf litter and pine straw brush and weeds from your lawn.

Restrict the use of ground cover, such as pachysandra in areas frequented by family
and roaming pets.

Discourage rodent activity. Cleanup and seal stonewalls and small openings around
the home.

Move firewood piles and bird feeders away from the house

Manage pet activity, keep dogs and cats out of the woods to reduce ticks brought
back into the home. Use Frontline on your pets.

Use plantings or fencing that do not attract or confine deer

Move children’s swing sets and sand boxes away from the woodland edge and place
them on a wood chip or cedar mulch type foundation.

Trim tree branches and shrubs around the lawn edge to let in more sunlight.

Adopt hardscape and xeriscape (dryer or less water demanding) landscaping
techniques with gravel pathways and mulches. Create a 3-foot or wider wood chip,
mulch, or gravel border between lawn and woods or stonewalls.

Consider areas with decking, tile, gravel and border or container plantings in areas by
the house or frequently traveled.

Widen woodland trails.

Consider a pesticide application as a targeted barrier treatment

Encouraging predators like foxes, cats, snakes, hawks, and owls or Guinea Hens. Note: Guinea Hens have been know to carry bird flu.

Babesiosis and Chronic Lyme: Genus Babesia

I tested positive twice for Babesiosis. Babesiosis is a tick-borne disease caused by malaria-like parasites of the genus Babesia.

Symptoms I presented with:
Air hunger - yes - chronic
Cough - very mild
Fatigue - yes - chronic
Fevers - yes - chronic
Headache - no just cranial pressure
Hemolysis or Anemia - no
Imbalance without true vertigo - yes -Chronic
Mild encephalopathy - yes - Chronic
Shaking chills - yes - chronic
Sweats - yes - mild


That is in addition to the Lyme. Atovaquone and Azithromycin have been prescribed but I am starting get over whelmed with antibiotics to take. I take something - 2 to3 nutritional supplement or an antibiotic every 2 hours. That's is a lot of drugs to swallow. You see that is my part of the deal. The doctor diagnoses and prescribes but it is up to me to take the medication. So I am struggling to figure out how to do this best. Open my mouth - pop um in and swallow is my strategy right now. Other patients have been perscribed artemisinin or

Babesiosis also occurs most in immune compromised individuals. So now I am wondering if I am immune compromised in some other way than just Lyme. Time to get the old HIV Hepatitis and all that crap at my next OBGYN appointment. I have been happily married for 15 years so I think my risk factors are low but it is good to check it out.

Babesiosis as with any infection is only fatal when not treated.

US Estimated Growth in Lyme Diagnosis against AID, HIV, TB and Malaria

BACKGROUND: US Estimated Growth in Lyme Disease viewed against AID, HIV, TB and Malaria

click to enlarge

Senator Dodd

”Approximately 20,000 Americans contract Lyme disease each year, and the numbers are rising,” Dodd said in a news release.

A trip to Urgent Care disrupts my treatment

I am too sick to blog these days but I want you to know what Lyme treatment is like. My recipe for healing is:

Doxycycline 3 time a day for 6 month
Biaxin 2 times a day for 6 months
1 gram C 3 times a day
1500 mcg B12 three times a day
Magox

total cost out of pocket is about 2500 dollars.

I started my Lyme treatment just after a treatment for a bladder infection. The urinary track infection treatment consisted of 5 days of Cipro and then 5 days of Macrobid. Once that was completed I started the above Lyme treatment. After 3 days of the Lyme treatment I began to Herx. So when the bladder pain returned I first thought it was Herx and then realized Sunday morning that the symptom where a return of the bladder infection. It went to my kidneys. I got a shot of Rocephin and a new antibiotic for my bladder infection for the next 10 days. Luckily my kidneys are in great shape and should flush this infection out in 10 days. The I will start my Lyme treatment again. I also took a Difulucan for yeast which helped the itchy scratchy but my Lyme Doc encouraged me to only use this when I have to. Be sparing.

I just slept a lot this weekend. I am back at work this morning. I feel rather bad but I want to keep working for as long as I can.

Chronic Lyme Brain Fog

Chronic Lyme Brain Fog: I am standing in the elevator with my car key in my hand. I am pressing the unlock car door button as I point it at the elevator buttons. The elevator isn't moving but I keep pressing. Everyone is staring at me. Suddenly, SNAP! I realize what I am doing. I look up and laugh. I play it off, "I read some where that the electronic signature in your key fab can activate the elevator sensor in some elevators. Just wanted to see if it worked. I guess it doesn't. Maybe this elevator uses an older technology." Everyone looks relieved and smiles. I press the button to the 5th floor. The doors close. No one is staring they just figure that the geeky chic is being geeky and they are talking amongst themselves. That was close.

Clongen Tests I did on my Spinal Fluid for Lyme and Other Tick Born Illness

Clongen Labs
http://www.clongen.com/

Test for Ticks Born Illness
http://clongen.com/lyme_disease_testing2.php?PHPSESSID=d2ceb22b7a1dd52d5719351779168f9e

I got the Panel B
http://clongen.com/Tick_Borne_Illnesses_Panels.php

I picked Clongen because they have their own proprietary testing panel for Lyme and other tick born illnesses. I wasn't willing to play around with the Western Blots and the inadequacies of LabCorp or the standard PCR that only looks for one genetic signature. Still there is only a 35% chance they will detect any disease. But that is better than the 12% chance I was looking at using LabCorp.

I will up date this post when I get my results.

The test was done on my spinal fluid. I had to have a spinal tap anyway so I decided to do this test out of pocket to see if I could track the penetration of the disease into my nervous system.

Note of Caution: Originally my neurologist was supposed to take the sample and send it to Clongen for me but we had a snafu.

My neurologist office doesn't physically pack up the sample for sending . They send it to LabCorp for that. But LabCorp being the competitive company that it is won't send out to other labs so they refused to send the sample to Clongen. They will send to one of our local hospitals so the neurologist had it sent to Rex Hospital. He asked Rex to send it to Clongen. But Rex refused and said they only send labs out to the Mayo Clinic. Mayo Clinic wouldn't know an acurate Lyme test from a whole in the ground. My neurologist was spelling out the bacteria names for Lyme disease because the Mayo lab director had never heard of them.

I have no idea that this is going on. I am flat on my back recovering from a spinal tap when I get the call telling me the sample is going to Mayo.

I call Rex immediately and tell them not to send to Mayo. My husband and I have pow-wow. We call the neurologist office and they are totally frustrated. I say to them 'what if my husband picks up the sample and we send it ourselves?' Their tone softened; "well that would be just fine". Off my husband goes and picks up the sample that has now been sent back to LabCorp. He packs it up and FedEx Priority Mails to Clongen.

We are waiting for the results.

If you choose this route then make sure to check your bill from Clongen. They tried to charge us twice. This is a common problem with many labs.

Lyme Disease on the Rise in DC

Alexandria (web | news) , Va. - It's a dangerous side effect of the D.C. area's wet spring as ticks carrying Lyme disease are popping up across the region.

Alexandria resident Patty Shannon says she had to stop working when she was diagnosed with Lyme disease two years ago at 40 years old.

"I'd have a full time job and I'd come home and I'd have to stop in a parking lot and crash for an hour," she said.

full article here
http://www.wjla.com/news/stories/0609/635149.html

"Lyme Senator": Dodd competes with Rell for my vote for president

Dodd introduces Lyme disease legislation By Senator Dodd's office

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WASHINGTON, D.C. — Senator Chris Dodd (D-CT), a senior member of the Senate Health, Education, Labor and Pensions Committee and Chairman of its Subcommittee on Children and Families, along with Senator Susan Collins (R-ME) introduced today the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009. The bill is co-sponsored by Senators Jack Reed (D-RI), Joe Lieberman (ID-CT), Sheldon Whitehouse (D-RI), and Benjamin Cardin (D-MD).

“Every year, tens of thousands of Americans working or playing outdoors are bitten by ticks. For most, it is nothing more than a minor annoyance. But approximately 20,000 Americans contract Lyme disease each year, and the numbers are rising,” said Dodd. “And because Lyme disease is difficult to diagnose, many experts believe the true number of cases each year could be as much as ten or twelve times the reported number. Worst of all, it’s our children who are most at risk.”

The bill would require that the Secretary of Health and Human Services establish a Tick-Borne Diseases Advisory Committee within the Office of the Secretary to address tick-borne diseases with other Federal agencies and private organizations. It also would require the Secretary act through Federal agencies to engage in activities including working to increase public education, creating a physician education program and sponsoring scientific conferences on tick-borne diseases.

The bill is supported by Time for Lyme, Inc., a Connecticut-based organization that seeks to eliminate tick-borne diseases by promoting research, education and legislation.

“Thank you Senator Dodd for representing the interests of New England, as well as the rest of the country including other endemic areas such as the upper Midwest, California and the Pacific Northwest,” said Diane Blanchard, co-Chair of Time for Lyme, Inc. “Your leadership and vision coupled with your role on the national healthcare stage send a powerful message that the US government will protect those who cannot protect themselves. The bill you are sponsoring and introducing will provide desperately needed funding to find the missing answers to help those afflicted and halt further spread of the disease.”

The full text of Senator Dodd’s introduction as prepared for delivery is below:

MR. DODD. Mr. President, I rise today to join my fellow New Englander, Senator Susan Collins of Maine, in introducing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009.

As families in New England look forward to outdoor fun this summer – and as families around the country look forward to vacationing in New England – they might not be thinking about the risks and dangers associated with hiking, camping, and other outdoor activities.

But every year, tens of thousands of Americans working or playing outdoors are bitten by ticks.

For most, a tick bite is nothing more than a minor annoyance. But approximately 20,000 Americans contract Lyme disease each year, and the numbers are rising. And because Lyme disease is difficult to diagnose, many experts believe the true number of cases each year could be as much as ten or twelve times the reported number. Worst of all, it’s our children who are most at risk.

Lyme disease was first described in my home state of Connecticut, and we still have the unfortunate distinction of being ten times more likely to contract Lyme disease than the rest of the nation. But the Centers for Disease Control and Prevention has received reports of new cases from 46 states and the District of Columbia. And according to some estimates, Lyme disease costs our nation more than $2 billion in medical costs each year.

Lyme disease can affect every part of the body. Tens of thousands of Americans suffer through pain, sever fatigue, sleep disturbance, and cognitive difficulties, among many other symptoms. Some of these victims are able to lead normal lives, finding ways to cope with the disease. But many more find the disease significantly disrupts their lives, preventing them from everyday experiences that we all take for granted.

The legislation we offer today directs the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee at HHS to coordinate efforts and improve communication between the federal government, medical experts, physicians, and the public.

It will improve diagnostic efforts, establish a national clearinghouse for research and reporting, and require that scientific viewpoints on this often-frustrating disease be disseminated in a balanced way.

It contains tools for researchers, physicians, and the public to improve awareness and treatment.

Finally, it requires the Secretary to prepare and submit to Congress an annual report tracking developments related to Lyme disease, its spread, its treatment, and its impact on families in Connecticut and around the country.

Lyme disease is a frustrating puzzle for physicians, a burden on our nation’s health care system, and most importantly, a threat to American families enjoying our beautiful outdoor spaces.

I want to specifically mention and thank the organization from my home state of Connecticut that worked closely with me to develop this legislation, Time for Lyme. The co-chairs and founders of Time for Lyme, Diane Blanchard and Debbie Siciliano, are tireless advocates for the patients struggling with chronic Lyme disease. This is not their job. They are parents whose children suffer from this disease. They work to find time in their busy schedules to make a difference. This is their mission and they give me hope that we can get this done.

I also want to thank my good friend, Senator Collins, for her leadership on this issue. And I want to thank Senators Reed, Lieberman, Cardin, and Whitehouse for their support for this bill. Whether it’s fishing on the Housatonic River or exploring Gillette Castle State Park near my home in East Haddam, Connecticut families enjoy a variety of outdoor activities.

But Lyme disease remains a persistent and dangerous risk for my constituents, for Senator Collins’s constituents, and for those across the country. With leadership from this body and better coordination from federal agencies, we can more effectively combat this disease, better protect our children and families, and make our outdoor spaces safer places to work and play.

I urge my colleagues to join Senator Collins and myself in support of this legislation and thank them kindly for their consideration.



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Where are the best Lyme literate doctors in the country

Where can I go to get treated by the best Lyme literate doctors in the country?

Hospital starts clinic for patients with chronic Lyme

By Arline A. Fleming/Independent Staff Writer

SOUTH KINGSTOWN — For several years, doctors and infection control specialists at South County Hospital have discussed the idea of starting a Lyme disease clinic to serve patients with complex health issues not responding to traditional treatment.

According to Lee Ann Quinn, manager of South County Hospital’s Occupational Health Services and Infection Control, the discussions led to surveys sent to primary care physicians asking if they would support such a venture.

A feasibility study was conducted, and conversations were held with the medical director of the Lyme disease clinic at Rhode Island Hospital, the only other clinic in Rhode Island of which Quinn was aware.

Now the hospital has opened its Lyme Disease Clinic and begun taking referrals from local physicians. Quinn said that the Friday clinic, held from 9 a.m. to noon and 1 to 3 p.m., is based in the hospital’s Emergency Room, Area B. Patients will be seen by appointment only.

This isn’t a clinic, she said, for the person who discovers a tick or bull’s eye rash somewhere on their bodies and wants to start treatment for suspected Lyme disease. It’s for the patient with a case so complex “that they are not responding to therapies,” Quinn said.

Chronic Lyme is the focus and not acute Lyme infection, she said. “The primary care physicians are recognizing the need for another set of eyes.”

So once an appointment is set – and this clinic already is booked into mid-July – the patient will see Dr. Frederic Silverblatt, Dr. Jeffrey Bandola, Quinn and other staff members in what she said will be a substantial appointment.

“We’ll take a very detailed history of the patient and spend a lot of time with them,” Quinn said.

Quinn came up with the idea for such a clinic several years back.

“It’s been my passion for a long time,” she said.

“We were getting calls from patients asking for referrals because they had chronic Lyme and weren’t getting anywhere. They wanted to be able to talk to someone.”

But she warns that it is not a drop-in clinic. Patients have to be referred by their primary care physician or an ER physician. Once the patient is seen at the clinic, Quinn said, “we’ll coordinate their care.”

Quinn said they got 51 responses to the survey of primary care physicians and specialists, with 33 stating they would refer a patient to a clinic if they had one. Of those surveyed, 20 said they were seeing an increase in Lyme disease, 21 said the numbers had stayed the same and three said it was lower, while some didn’t respond to that question at all.

Quinn said she believes there is a greater awareness of tick-borne illnesses. Clinic physicians and staff recently offered a lecture about the symptoms of Lyme disease at the Neighborhood Guild, which attracted a substantial audience, she said.

The clinic, to offer comprehensive diagnosis and treatment for not just Lyme disease, but also babesiosis, ehrilichiosis and other tick-borne diseases, is for adults only, and all major insurance plans will be accepted and standard co-pays will apply.

To schedule an appointment, call 788-1486. Although the clinic will be open on Fridays only, calls to schedule an appointment can be made Monday through Friday, 7:30 a.m. to 5:30 p.m.

Quinn also suggests checking the hospital’s Web site, www.schospital.com, for more information about Lyme disease.

Chronic Lyme: Antibiotic Resistance

Antibiotic resistance is real. But coupled with a fear in the medical community that we are teetering on the edge of the next killer pandemic the fear of antibiotic resistance has produced hyper-vigilance. Environmental concerns come from very well thought out studies that documenting the real evolution of bacteria and viruses in environmentally damaged areas of the world. The spread of Malaria is the most troubling. Where clear cutting produced an abundance of a certain mosquito that was rare until the environmental damage was done. You can fight the mosquito war with chemicals but these chemicals create and entirely new environmental disaster. So we end up in a damned if you damned if you don't situation that scares the people charged with caring for victim of epidemics.

I personally know a man who was treated for chronic sinus infections years with antibiotics and steroids. Surgery was not an option for his corrugated sinus structure. After 10 years finally his ENT said to him, "This is your last round of antibiotics, there is nothing left that I can give you. You have take everything on the market." End of the road. He stayed on that last antibiotic for about a year. Each time he tried to get off of it he got sick again. During that time he decided to loose weight and do everything he could to help the process and avoid dying of untreatable infection. It was very hard to be so dedicated to his health when he was so sick but he did it. He was very obese. He lost almost 200 pounds, began to exercise and eat right and suddenly other antibiotics that he had developed a resistance to started working again.

In the throws of an epidemic like malaria you won't have the time to correct an unhealthy lifestyle to make your antibiotics work more effectively. You take the drugs for malaria and then get infected again with a more advance strain of malaria and the cycle repeats itself until you just die. There is nothing that strikes fear in the heart of a doctor quite like a dead patient.

Doxycycline is the front runner for treating Malaria as well as Lyme and many other diseases. Antibiotic resistance to this drug is troubling.

So this is the fear in the heart of your doctor. There is social component too. "What if I treat you with 8 months of antibiotics and we create the next eveloution of the bacteria that is making you sick. What if the new evaloution is more horrible than anything we have seen previously? What if it is a super bug?"

Well this is a lot of "what ifs" that based on fear and real lack of understanding of how antibiotic resistance develops. 8 months of antibiotics will make a person well - 8 years makes a person resistant. A friend of mine was treated repeatedly for 3 years for recurrent urinary tract infection with more advance antibiotics each time she got sick. Finally she was hospitalized and developed MRSA in the hospital. She recovered from MRSA well without the need to try different cycles of antibiotics. She did not develop antibiotic resistance. She was able to recover from a super bug infection. But she was a person dedicated to a healthy lifestyle even when she was sick.

Chronic Lyme treatment is more scary because it usually involves a cocktail of antibiotics required to treat co-infection. Theses cocktails are normally reserved for very advance infections such as MRSA or TB. So that raises a red flag immediately.

Do we as Lyme patients have the responsibility not to create the next new "super Lyme bug"? You bet. It is your responsibility to take the shortest course possible. (Not an ineffective course just the shortest course. For Chronic Lyme that maybe 8 months to 3 years.) Is it your job to live a model lifestyle with healthy habits? Yes. Is it your job not re-expose your blood to the tick population once you receive treatment? Yes.

Should you lay down and die in the interest of not becoming antibiotic resistant. That is just silly.

More serious with Lyme is developing antibiotic resistance due to under-treating. This is what happens when person does stops taking there antibiotics when they feel better. Only to become sick again because they didn't take they full course. Now the patient must take a more advance antibiotic to get over the new infection. Taking 3 weeks of Doxycycline to treat Lyme is also on the same irresponsible path as it only treats one life cycle of Lyme bacteria. You can tell you doctor that you want 9 weeks. But this will only help if you have a brand new infection. For most people they have gone years before finding out that they have Lyme and this will require many months of antibiotics.

Recovering from the spinal tap: Chronic Lyme

Thanks the emails and your prayers. I need all I can get right now. I did the spinal tap on Monday -4 days ago.

Spinal tap is fairly routine but the emotional aspect of it is what got me. It is a painful procedure even if you have someone who knows what they are doing. I had a similar procedure when I had my c-section so I knew what to expect a little bit. But this time - no baby to look forward to.

I have vasovagal syncope so I also dread the inevitable fainting too.

I tensed up terribly before the doctor gave me the "stick" and that left me with a "car wreck" type of soreness in my legs that will take about 6 weeks to heal from.

It was a champagne tap so I suppose I owe Ken a bottle of champagne.

Then there is the laying flat for 24 to 48 hours. I did 48 hours on purpose because I am slow healer. But I started sitting up for short periods of time after 24 hours. Worst side effect was fatigue. I never got the headache. But I get intracranial pressure anyway and the tap made it worse. So I can hear my own heart beat throbbing in my ears still today. I have sound and light sensitivity. The sharp sound of someone sniffling bothers my ears.

There was nothing like being bed ridden to really play with my mind. I don't take naps during the day because it can trigger depression and aggravates my sleep cycle which in turn aggravates the body pain of Lyme. I do sit down and rest during the day. So I got really squirrely in the head. I felt too exhausted and sore to even read magazines. Just laying down for too long makes my body ache too. I am glad to be on the other side of this.

Pseudoephedrine ban in NC

So I talk about the epidemic of Lyme and how it affects my life but there is another epidemic that I have been watching and that is the advance of Meth (Methamphetamine) across the nation to the eastern seaboard. Lyme stinks and treatment and testing need to be resolved. But Methamphetamine is the plague on fire. I would like to see the total ban of sales of products containing Pseudoephedrine or ephedrine with or without a prescription. I would like a ban on the production of this drug within the US for the purpose of export and tough sanctions put in place to make other governments due the same. Sure I get sinus infections just like everybody else but I will take an extra week of antibiotics and Mucinex to get Pseudoephedrine or ephedrine out of our country now! I am a nice middle class American - just a little white lady that works 9 to 5. So I am just one voice but not if you join me in the fight against Methamphetamine.

Rell for President - He's got my vote!

Rell signs chronic Lyme disease treatment bill
By Brian Lockhart Staff Writer
Posted: 06/21/2009 11:41:58 PM EDT
Updated: 06/22/2009 07:03:59 AM EDT

HARTFORD -- Gov. M. Jodi Rell on Sunday signed a bill that
allows doctors to diagnose and treat chronic Lyme disease
without fear of repercussion from peers or state health
regulators.

"Doctors in Connecticut, the absolute epicenter of Lyme
disease, can continue to do what is best for their patients
suffering from this complex illness," Rell said in a statement.
"The bill also recognizes that Lyme disease patients must have
the freedom to choose which remedy or regimen best meets their
needs."

Lyme disease was discovered in Lyme, Conn., in the 1970s.
Treatment has become a hotly debated topic in the medical
community.

Many Lyme disease patients, including some state lawmakers,
believe they have a recurring form that requires long-term use
of antibiotics. But prominent physicians and medical groups,
including the Infectious Diseases Society of America, say
chronic Lyme is a myth and that it is potentially dangerous to
prescribe treatment beyond the standard 28-day course of
antibiotics.

The result has been two standards of care for Lyme disease
patients -- that recognized by IDSA and another promoted by
physicians willing to diagnose the chronic form.

The bill, unanimously supported in the General Assembly, does
not force physicians to take a position, but proponents hope
more doctors will feel comfortable prescribing longer-term
antibiotics if they determine that is the proper treatment.
There was concern among some lawmakers who sponsored the bill
that Rell might be swayed to veto it.

Dr. Phillip Baker, executive director of the American Lyme
Disease Foundation in Lyme, earlier this month wrote Rell
urging her to kill the bill. Dr. Lawrence Zemel, professor of
pediatrics at the University of Connecticut Health Center, said
in a recent letter to the Hartford Courant that the legislation
is "ill-considered."

"As a physician, I know long-term antibiotic treatment is
dangerous," Zemel wrote. "Why do some patients believe
prolonged antibiotic therapy improved or eliminated their
symptoms? For many, their symptoms are self-limited, and their
improvement has nothing to do with their treatment. For others,
the antibiotics may have anti-inflammatory effects ... And for
some there is a strong placebo effect. If they think they will
get better (and pay dearly,) then they do."

But the Connecticut State Medical Society backed the bill,
saying doctors should be able to choose the best method of care
for their patients.

"This bill does not ... shield any physician who provides
substandard care," Rell said in the statement.

Just an update on the Spinal Tap: Chronic Lyme

I am out of the bed and back at the office from my spinal tap. I feel like hell.

Ticks, Rain, Acorns and Lyme

Tick Concerns

"Connecticut's two major ticks — the Lyme disease-carrying deer tick and the American dog tick — tend to thrive in a wet weather pattern, says Dr. Kirby Stafford, vice director and chief entomologist at the Connecticut Agricultural Experiment Station".

Interesting to me as Lyme reporting during NC droughts has been lower.

"The threat of Lyme disease and other tick-borne illnesses in Dutchess County could be high this year based on the number of acorns that fell two autumns ago, a local tick expert said.
"We expect a moderately high year for Lyme," said Richard Ostfeld, animal ecologist with the Cary Institute of Ecosystem Studies in Millbrook(Millbrook N.Y).

The connection between acorns and ticks is the white-footed mouse, Ostfeld explained. Blacklegged ticks, formerly known as deer ticks, feed on the mice that eat acorns. If the crop of acorns is abundant in the fall, the population of mice will be as well, Ostfeld said.
It takes two years for the disease to trickle down to the ticks that bite humans.
In autumn 2007, the number of acorns was moderately high, but the 2008 count is fairly low.

"So we might get a break next summer," he added."

So I am thinking that cutting down the 2 oak trees in our backyard was not so sad after all. We had to do something the root system was wrecking our foundation. Ah but there are 2 more. I hate to cut those down too - I love trees. I just bought three dogwoods and three cherry trees from the Arbor Day Foundation. They are just twigs with roots but I have high hopes. My doctor said I should put Seven down in the yard. This however will kill the lightening bugs which are a magical part of summer for me. I should also get rid of my bird feeders too because we are right on the edge of the North Atlantic Flyway. Of course thats why I put them up in the first place. - Well I draw the line at my dogs. They stay.

Planning ahead: Living and Dying Well with Lyme

Of the 179 death records of adults in the Northeast who have Lyme as part of their COD on the death certificate the average life span is 54 years old. Weigh in that some of these people had very little if any treatment for Lyme. The age of Lyme onset ranged widely.

At 68 my mother in law had a stroke that 6 months later ended her life. She never had a chance to say if I only had 20 more years to live how would I live? But I do. It feels like a blessing.

Lyme Reporting in Georgia

Physicians in Georgia please report your Lyme cases here. No where is the double bind reporting of the Dearborn commission seen more clearly then in the Georgia CDC stats for Lyme. Below are two charts that project what reporting should have been and a projected actual. It is a far different trend than is shown by the CDC currently for Lyme in Georigia.

The Lyme Double Bind: if a patient shows up with a bullseye rash they will not yet be positive on the ELISA or Western Blot(because most of the OspA lines have been removed). You could withhold antibiotics and wait for the tests to show positive results. But the longer you wait the sicker your patient becomes. With the ever growing evidence of Chronic Lyme you could be risking your patients neurological health by waiting. So you say forget the CDC and you treat your patient on the spot like any good doctor would.

But now you have a different problem. You have an epidemic growing in your state and no one knows its scope. Call to action for Georgia Physicians. Please create a new Lyme reporting data base among yourselves. Anonymity for both the patient and physicians is critical.

Metric One: Clinical presentation of Lyme without rash
Metric Two: Clinical presentation of Lyme with rash
Metric Three: ELISA presentation of Lyme without rash
Metric Four: ELISA presentation of Lyme with rash
Metric Five: Meets CDC requirments

What your trend should look like.... note: (2009 reporting should be 4 to 5 times hire than stated below due to high acorn production increasing the amount of white foot mice that act as hosts for Lyme caring ticks.)

Questions we ask when being hard working and responsible fails

Am I safe?
Who can I trust?
Is there anything I can do?
Given everything that has happen how should I live?

Lyme Happy

Are you the kind of person who will die from a misprint on a drug label? Knowing your mental state is important in treating Lyme.

Treating the part that is all in your head. “It’s all in your head” are fighting words for people suffering from Lyme. As you know doctors telling you this say it to invalidate you. But they take less than 5 hours of psychology or psychiatry courses in college and even less time in active practice so they aren't qualified to make any judgments about what is or isn't in your head. The small parts of the human body that medicine does understand are eclipsed by what medicine doesn't understand.

But let’s face it we should make: “its all in your head” our mantra because Lyme is a neurological disease. The problem with this spirochete is it goes for the brain. A good neurologist can help you with brain mechanic problems but you are going to need a psychiatrist for the rest of it. You know – the “crazy” part that no one likes to talk about. The part of Lyme that drives people to homicide and suicide.

You live in your head and no one knows your head quite like you do. Are you a naturally dark or melancholy person? Are you a worrier? On the other end are you a naturally happy, bubbly person who is sitting in their basement with a shotgun.

Neither the neurologist nor the psychiatrist can cure Lyme but they can help us manage the effects of the disease while we undergo antibiotic treatment. So part of recovering is; “reaching in our head and making our happy – happy.” Here is a list of what has worked for me as well as other Lyme suffers.

1. Misery loves company and this actually is one of Gods great mysteries and blessings. Volunteer to help the sick. If you can help a fellow Lyme suffer great but if one is not available - try the local retirement center or hospital. Use good hygiene protocol in these places so that you don’t pick up extra illnesses.

2. Seroquel, Abilify or Risperdal or other mood stabilizer plus an antidepressant or anti anxiety like Prozac or Paxil. Avoid controlled substances that could produce addiction. No reason to get well from Lyme only to be a drug addict.

3. Exercise 7 minutes a day – 3 times a day. Even if all you are doing is hobbling around. Crawling counts as exercise in my book.

4. Get a pain management specialist. Drugs like Tramadol and activities like hot baths are prescribed. NEVER be your own pain management specialist. Rife machines do not kill Lyme but they do kill pain by short circuiting inflamed nerve ends using electrical shock. Running electrical current through the body is never a good idea. In the long run it will not be good for your brain and can increase depression - and that is why shock therapy has been discontinued.

5. Support Groups. Share your feelings with people who understand exactly what you are going through. ILADs can hook you up with one in your area. Virtually you can check out LymeBlog.com

6. Eat well. Often times when we are sick we need to recruit friends and family to help cook for us. You want to ask for fruits, vegetables, brown rice or whole grains as well as non-ground or shredded chicken or fish or some other protein of your choice. Just water and real juice. No soda or corn syrup. Eat your yogurt to combat the side effects of antibiotics. Keep it simple.

7. Sleep, no late night with Conan. If you have disturbed sleep patterns as I do; remember when you wake up at 3:00 in the morning to do some simple relaxation exercises and meditate on some of the happiest times in your life. Have list and photos of these times by the bed. When you wake up at 3:00 am in pain and with chills it is hard to remember those happy times and easy to despair.

8. Laugh, buy and rent comedies you like. If you watch just one 5 minute sketch of Monty Python and get a laugh in you are doing great. Read the funnies.

9. No alcohol, cigarettes or illegal drugs. I say – no alcohol because antibiotics and alcohols are a terrible gut wrenching combination. Your liver function will be crap if you do the two together. I know medical marijuana sounds very appealing right now but don’t do it! Might as well use this “opportunity” to get rid of the other things that are killing you. But don’t do it alone. Get yourself to a support group to help. We are all in this canoe together and we will help you row when you cannot.

10. Limit your supplements to B12, C (1 gram), Florastar and Magox. Never ingest anything containing heavy metals. B12 and B6 plus half a regular strength Unisom at night will help with nausea. (same as the morning sickness drug Diclectin) No homeopathic remedies that could have serious side effect interactions with antibiotics like Biaxin used to treat co-infection.

11. Drawing and singing even if you are not a professional artist or entertainer. Just singing in the shower has an immeasurable positive effect on happiness.

12. See an audiologist for hyperacusis. It feels as if you can hear some one chewing gum a mile away from house and you are ready to hop in your car and hunt them down and kill them. Hey “take it easy Francis”, go see your audiologist for treatment.

While the above list will help you become happier and more sane - It will not make you better. Antibiotics will do that. To get well you have to be emotionally up to swallowing a high power antibiotic 5 times a day. That is what the doctor can’t do for you. So as much as you focus on your meds focus on your happiness.

Back from the Beach: Lyme Magic

The magic of the ocean. I went to the beach for 5 days and feel soooo much better. The beach has this unusual healing effect upon my body. My mother laughed when I told her this. She said, “Everyone feels better at the beach”. This is true and we should probably all go to the beach more but for me something really special happens. For example: I had a urinary track infection for most of the vacation. Unfortunately I was being treated with the wrong antibiotic but still I was getting over it on my own. I got out of the car on Saturday when we arrived and I was so sick that I could barely walk up the steps to the hotel. I left on Wednesday and I was taking care of the kids like I used to before I got sick and loading up the car to go home. Do I still have tremors, joint pain and senior moments – yes but strength is returning to my body. I am back at work today and I am really working - not just scrapping through the day.

I know with Lyme this could change on a dime. But for the moment I still basking in the sun.

The cost of medical care

See you can walk into Best Buy and get a Flip video camera for 125.00 to 199.00. You can check that price online to see if you are getting ripped off.

But lets say you want to pay for medical care out of pocket. If you need your gal bladder removed after that long anitbiotic therapy for Lyme. You can't call up 3 hospitals and say so how much is the operation. Just the operation not all the stuff you have to do to accommodate to an individuals age, immune system or allergies and what not. Just how much is it to cut me open and pop it out. Sew me up! No one can say.

So I hear a nurse at the office go off. $365.00! she is yelling. "What in the he**! So I go to see what she is upset about cause it sounds expensive. It's a 4 pack of those little glass slides that they use to put the blood of a finger prick on. $365.00 - wow! So we priced around and found them for $22.00 but it turned out they weren't really medical grade but being sold as medical grade. We settled on a box for around $200.00. A little piece of glass that costs $50.00.

So when your doctor hands you a bill and you gasp. Understand he gets very little of that money. Most of it goes to everything from supplies and calling the plumber to repaving the parking lot.

Lyme treatment: Its not really so expensive

So I looked at the treatment cost of Lyme at its worst it is about 15K for IV treatment for the most severely infected. At its best it is about 1K for a 6 month oral does. Parkinson's, MS, Lupus and Alzhiemer have huge price tags. Why not just give these patients 6 month of antibiotics - what is the worst that could happen. They might get better and go back to work. So what is the big deal? Maybe we dont have a big enough price tag?

Heart disease has a much larger price tag about $100,000 very similar to a long laundry list of other ailments like plain old skin cancer. The insurance companies are paying these bills with only minimal squeaking. So what gives with the Lyme thing? Doxycycline in any form is cheap. An IV line is an outpatient procedure. Chemo and Bi-pass Surgery are very expensive.

Is the problem that we are not going to be on a drug like a statin for the rest of our lives? So we are a dead end profit trail for pharma. Is our low price tag exactly the problem. We fall into a funny range of "unprofitable procedures".

The whole thing is just odd. I hear conspiracy theories like US Lyme is an enhanced form of Lyme escaped from a Bio weapon facility on Plum Island and this is all a big government cover up gone way wrong. But that is so weird. There are just too many US legislators with Lyme or have family members with Lyme to let that go unchecked.

Maybe I am naive and just believe in the global consciousness too much. I think this is going to boil down to "over active actuaries" influencing medicine. This whole thing is just going to be a sad misguided chapter in US Medicine like the Tuskegee experiment. Just think of all those poor men they gave placebo treatments to for Syphilis. What about their families. Very sad.

ISDA New Panelists 2009 Lyme Disease Guidelines

this page is still under construction

Carol J Baker: ISDA New Panelists 2009 Lyme Disease Guidelines: "AKA the Vaccine Chic"
...For having inspired and trained a generation of pediatric infectious diseases specialists, IDSA is proud to honor Dr. Baker with a 2008 Mentor Award. Society Citation The Society Citation is a discretionary award given in recognition of exemplary contribution to IDSA, an outstanding discovery in the field of infectious diseases. She is big on vaccination access for all children. Worked in conjunction with Bio-Chem, ARUP Laboratories on developing vaccines and all sorts of cool diagnostic stuff. She's been busy.

*President of NFID
*Member of the Advisory Board on Immunization Practices for the CDC
*Past President of the IDSA
*NIAID Investigator

1968 Infectious Diseases training at Baylor and Harvard Medical School in Boston.

Paul H Duray ISDA New Panelists 2009 Lyme Disease Guidelines. He is the skin guy - keep an eye on your pet hamster around this guy he infected 9 of them in his Lyme research. Noteworthy thoughts from Duray P H. : Histopathology of clinical phases of human Lyme disease. Rheum Dis Clin N Am. 1989;15:691–710. Department of Pathology, Fox Chase Cancer Center, Philadelphia, Pennsylvania...(very prestigious cancer hospital)* "Acute, subacute, or chronic persistent human Lyme borreliosis is an inflammatory disorder composed pathologically of lymphocytes, plasma cells, macrophages, and mast cells. The lymphoplasmocellular infiltrates can at times be seen in the skin, subcutaneous tissues, lymph nodes, spleen, liver, myocardium, brain, autonomic ganglia, and peripheral nerves. The joints in arthritic cases have proliferative synovitis, fibrinaceous deposits, lymphoplasmocellular aggregates, and mast cells. Varying degrees of vascular damage does occur in these sites; however, usually only in late, chronic disease. Spirochetes are present in most sites, in an extracellular location, but are sparse." Loved and sponsored by your very own US Government and US Public Health Service Commissioned Corps. Your tax dollars hard at work.

Paul M Lantos ISDA New Panelists 2009 Lyme Disease Guidelines...(Duke HOSPITAL)* Loved and sponsored by The US Government and US Public Health Service Commissioned Corps. Your tax dollars hard at work. Noteworthy thoughts : Author of Babesiosis: similar to malaria but different. (snappy title) Lantos PM, Krause PJ. Division of Infectious Diseases, Connecticut Children's Medical Center, 282 Washington Street, Hartford, CT 06105, USA.

Gerald Medoff ISDA New Panelists 2009 Lyme Disease Guidelines
*IDSA is honored to present Dr. Medoff with a 2008 Mentor Award.
*NIAID Chairman AIDS Research Advisory Committee
*Executive Board Member AIDS Clinical Trials Unit
*NIH - 30 years of NIH Funding and basic and clinical research
*Fellow of the Infectious Diseases Society of America.
*Served on a Research Advisory Board for the National Institute of Allergy and Infectious *Diseases along with the CDC
*Sited as a conflict of interest for his IOM input on vaccines as a cause autism in children.

1970- Junior faculty member at the Harvard Medical School before returning to Washington University

Jeffrey Parsonnet ISDA New Panelists 2009 Lyme Disease Guidelines: Watch out as your research this name there is Julie Parsonnet out there in the same field with a ton of funding.
Note worthy quote: "Dr. Jeffrey Parsonnet, the director of the infectious diseases training program and an associate professor at Dartmouth Medical School, said that the increase in cases is a real trend that is likely to continue, due to the high number of infected ticks and the large deer populations in the region.
"Some of this apparent increase may be a reflection of increased awareness and increased testing," he said. "But it is almost certain that the true incidence of Lyme is increasing in northern New England."

Reveiwed a book by DuPont HL DuPont HL, Steffen R. Textbook of travel medicine and health. for diagnostic tests and vaccines. 3rd ed. Paris: OIE, 1996.Hamilton, Canada: BC Decker, 1997.

He wrote this one that Carol Baker refers to a lot..
Parsonnet J, Goering RV, Hansmann MA, Jones MB, Ohtagaki K, Davis CC, Totsuka K
Prevalence of toxic shock syndrome toxin 1 (TSST-1)-producing strains of Staphylococcus aureus and antibody to TSST-1 among healthy Japanese women.
J Clin Microbiol 2008 Aug; 46(8):2731-8
PMID: 18550735 [PubMed - indexed for MEDLINE]

He was apart of this CDC project
ResearchSurveillance for Unexplained Deaths and Critical Illnesses Due to Possibly Infectious Causes, United States, 1995–1998 (UNEX) We thank the following scientists for their extensive help in discussion and laboratory testing of the various UNEX cases: Jeff Parsonnet

General background

Institution Affiliations:
Dartmouth-Hitchcock Medical Center, LebanonInfectious Disease and International Health
Medical School:
MD, New York University School of Medicine, New York, NY, 1979
Residency:
Yale-New Haven Hospital, New Haven, CT, Internal Medicine, 1979-82
Fellowship:
Beth Israel Hospital and Brigham & Women's Hospital, Boston, MA, Infectious Diseases, 1982-85
Board Certification:
Infectious Disease, 1984Internal Medicine, 1982

Interested in Clinical care, general Infectious Diseases;Pathogenesis, epidemiology, and treatment of toxic shock syndrome; Epidemiology and treatment of sepsis; Clinical care of patients with HIV infection; Clinical trials of new agents for treatment of sepsis and staphylococcal infections; Lyme disease


William A Charini ISDA New Panelists 2009 Lyme Disease Guidelines

Manuel H Moro ISDA New Panelists 2009 Lyme Disease Guidelines

David M Mushatt ISDA New Panelists 2009 Lyme Disease Guidelines

John W Sanders ISDA New Panelists 2009 Lyme Disease Guidelines

Howard A Brody ISDA New Panelists ombudsman

Western blot bands for Lyme

Note: Bands preceded with an asterisk are the 11 Western blot bands for
the ASTPHLD, CDC, FDA, NIH, CSTE, NCCLS 1994 conference recommendation
("CDC recommendation") for the serologic diagnosis of Lyme disease -
see 1995 CDC MMWR link below.

Osp = (Oligodendrocyte-specific protein)

5-kDa
7.5-kDa
11-kDa
13-kDa surface protein - sensu stricto, afzelii
14-kDa internal flagellin fragment [specific for Bb]
15 kDa polypeptide [also for syphilis]
16-kDa
17-kDa Osp 17 [B. afzelii]
*18-kDa p18 flagellin fragment
19-kDa immunogenic integral membrane lipoproteins
       cross-reactive with other spirochetes/bacteria
       Characterization of antigenic determinants of Bb shared by other
       bacteria.
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b
19-kDa decorin-binding protein
20-kDa decorin-binding protein
20.5-kDa
20.7-kDa
*21-kDa OspC [specific for Bb]
22-kDa [specific for Bb or cross-reactive depending on what one reads]
       immunogenic integral membrane lipoproteins
       [cross-reactive with other spirochetes/bacteria]
       Characterization of antigenic determinants of Bb shared by other
       bacteria.
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b
22-kDa OspC [specific for Bb]
22-25kDa OspC
23-kDa OspC
*24-kDa OspC
25-kDa OspC [specific for Bb]
26-kDa
27-kDa Osp, Hsp
       (Europe burgdorferi strain B29, but not American strain B31)
*28-kDa OspD, Oms28 [specific for Bb]
29-kDa OspA?
30-32-kDa OspA
*30-kDa OspA substrate binding protein
31-kDa OspA [specific for Bb]
32-kDa OspA (Oligodendrocyte-specific protein)
33-kDa outer membrane
34-kDa OspB [specific for Bb]
34-36-kDa OspB
35-kDa OspB [specific for Bb]
35.5-kDa
36-37-kDa
37-kDa P37, FlaA gene product, [specific for Bb]
38.0-kDa FlaA
*39-kDa BmpA [specific for Bb]
40-kDa
*41-kDa FlaB
42-kDa
43-kDa
44-kDa
*45-kDa [appeared in IgM in control group in 1998 study done in Poland]
       MEDLINE - 9972057 - "...whereas in control group only antibodies
       against 45 kDa and 58 kDa were present."
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9972057&form=6&db=m&Dopt=b
       [appears for HGE]
       MEDLINE - 9620365 - "...confirmed the importance of the 42- to
       45-kDa antigens as early, persistent, and specific markers of HGE
       infection."
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9620365&form=6&db=m&Dopt=b
46-kDa
47-kDa P47 fibronectin-binding protein [specific for Bb]
48-kDa
49-kDa
50-kDa [specific for Bb]
51 kDa MgtE
52-kDa Fn-BA
54-kDa [other Borrelia]
55-kDa
56-kDa
57-kDa PBP
*58-kDa (not GroEL)
59-kDa [a genetically engineeried fragment of the 83-kDa protein]
60-kDa Hsp [all Borrelia]
62-kDa Hsp60
63.7-kDa
64-kDa (P64) [cross-reacts to human axonal proteins]
65-kDa
*66-kDa P66 Oms66 Hsp outer/integral membrane protein
67-kDa
68-kDa
70-kDa Hsp
71-kDa
72-kDa Hsp [cross-reactive with other spirochetes]
       [cross-reactive with other spirochetes/bacteria]
       Characterization of antigenic determinants of Bb shared by other
       bacteria.
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b
73-kDa
75-kDa
77-kDa a genetically engineered recombinant hybred
       Use of a hybrid protein consisting of the variable region of the
       Borrelia burgdorferi flagellin and part of the 83-kDa protein as
       antigen for serodiagnosis of Lyme disease.
       http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8027303&form=6&db=m&Dopt=b
78-kDa OspA
79.8-kDa
80-kDa
83-kDa p83 high molecular mass protein [specific for Bb]
84-kDa [B. garinii]
88-kDa
92-kDa
*93-kDa an immunodominant protoplasmic cylinder antigen, associated with
       the flagellum [specific for Bb]
94-kDa PBP [specific for Bb]
95-kDa
97-kDa associated with flagella
100-kDa P100
110-kDa
200-kDa a fusion protein, a hybrid protein

Radioactive Tick

Radioactive Tick

My son is watching the cartoon spider man and runs into the kitchen and says - "Mom if it was a radioactive tick your might just be turning into a superhero." Since he is 9 he has no idea that someone already beat him to this. But it made me laugh and laugh. We will all have to turn into superheroes to make sure that our grandkids never have to worry about Lyme again.

Nicely noted paper on Lyme borreliosis

Psychiatric manifestations of Lyme borreliosis
Fallon BA, Nields JA, Parsons B, Liebowitz MR, Klein DF.Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY.

BACKGROUND: Lyme borreliosis (Lyme disease), a tick-borne spirochetal illness, has later manifestations that may include arthritic, neurologic, ophthalmologic, and cardiac symptoms. Recent reports suggest psychiatric symptoms may also be part of the clinical picture. METHOD: Using a structured interview (SCID), we interviewed three patients who had developed a psychiatric disorder for the first time after infection with Borrelia burgdorferi. RESULTS: During Lyme borreliosis, one patient had major depression and panic disorder, one patient had an organic mood syndrome with both depression and mania, and the third patient had panic disorder. These disorders remitted after adequate antibiotic treatment. CONCLUSION: While depression has been previously linked to neuroborreliosis, this is the first report to link panic disorder and mania with borrelial infection. Because of the rapid rise of Lyme borreliosis nationwide and the need for antibiotic treatment to prevent severe neurologic damage, mental health professionals need to be aware of its possible psychiatric presentations.Publication Types:
Case Reports
Research Support, U.S. Gov't, P.H.S.PMID: 8335653 [PubMed - indexed for MEDLINE]

IV Antibiotics Day - Coming Soon

Lyme symptom index = 6

Shortly I will be evaluated by an ILADS Doc for IV Antibiotics. I received so many positive an encouraging comments by other Lyme survivors who are undergoing IV therapy I am no longer dreading it. From many of the stories I read - this really works and you really do get your life back! I am so hopeful.


Lyme Tool and Quack Detector:
I write my medical history down in a one/two page summary. You can fit a lot of important stuff on one page. It took me about 3 weeks to write. I gather all my medical records from 5 years and pieced together a summary. My GP recommended this. After each appointment it takes about one week to update. I also read about this as a care takers tool for people with Alzhiemer's. My memory is so bad that I can't remember my medical history when asked. I end up giving too many vague answers to important questions if I try to do it from memory. I am also a terrible poly-anna. I tend to white wash things in the hopes of coming off better than I really am. I don't want anyone to know the intensity of my illness.

Now if I hand this summary to a doctor and he reads it carefully. He or she is a winner. If they take a cursory glance at it and then go on with their little dance then they get fired. Yep, just like Donald Trump.

It's like my own little quack detector.
Go get um!

It's off subject but I think all Lyme suffers can appreciate this picture

Chronic Lyme: Luckily its all in my head.

So after a tick bite in New York in 1994 I went down hill. I was in NY applying for graduate school. But got really sick and I started to just loose my mind. I was a senior in college and suddenly I could not settle down and write a term paper. I couldn't do research in the library. I was a loose cannon. So I said to my self - "self this is not like you. Go to the school psychiatrist and get some drugs to calm you down". So I did and it worked and I graduated from college. Due to my new mental state I scaled back my dreams and did not go to graduate school.

So just a year later I started getting really sick and arthritic. I said to my self -"self shut up! This is just arthritis just like your dad has. You must exercise more and eat better." And so I did and it did not help. I scaled back my dreams to accommodate my pain.

Then I became exhausted easily and depressed in an odd sort of way. I was not sad in fact I was happier than I had ever been but my body seemed sad. I said to myself "self this won't due you are young and you need to be robust." So I went to the doctor and got new better psychiatric drugs. All I can say for that is I managed to show up for work each day and that's about it.

So I scaled back my dreams a little more to accommodate my lack luster attitude.After all anything can be cured with Prozac, Ibuprofen, good diet and exercise.

Then I had my son and I hurt so bad I couldn't pick him up and I said myself "self you have to be an outstanding mother first and foremost". I went to the doctor and the doctor said 'its post pardon depression - take these'. I was in total agreement with my doctor a 30 year old woman had no business having such ailments - it absolutely must be in my head. And this time I took the drugs and no matter how hard I squinched my eyes together in pain and told myself - "self stop it! It's all in your head". I still hurt.

So I scaled back my dreams and focused on only doing the basics for my family. Many years of this went on and I grew sicker and more exhausted.

I was referred to psychiatrist for evaluation of all sorts of "its all in your head medical stuff." After many weeks of careful evaluation and trying different pharmaceuticals the psychiatrist looked at me and said, "this is not all in your head - there is something wrong with you physically. We need to find a doctor who will help you."

And now it is 2009 and I finally know I have Lyme. I wish it had all been in my head.

Herbal Cures for Chronic Lyme or Profiteering?

In every epidemic in US history – Yellow Fever, Typhus, and Cholera there has been profiteering. How does this happen? Why did 10% of Philadelphia’s population die in the first few months of Yellow Fever? Medical professional divided in to two camps bickering bitterly over the cause and treatment of Yellow Fever. As they fought amongst themselves – people died in great numbers. Panic set in and the snake oil salesmen stepped up with a cure called 10 and 10. (10 parts poison and 10 parts mercury) It had a cure rate of 80%. However if left alone 85% of Yellow Fever patients recover on their own. The snake oil sales men actually killed 5% more people than the disease. The survivors of 10 and 10 lived sick and pitiful lives. As our doctors divide into camps bickering bitterly over the cause and treatment of Lyme they leave us open to snake oil salesmen. Encourage your LLMD and ILADs doctors to find common ground with the opposition. Even if they can agree on only one small thing it will become a tour de force that is unstoppable. The snake oil salesmen will be run out of town. The largest profiteers in the Lyme epidemic are the insurance companies who promise care in your time of need and then turn their back on you. I have paid about $120,000 to BCBS in the last 20 years. Where are they now that I am sick?

One other note about skipping town. In every epidemic in US history doctors and lawmakers are the first to skip town. The sick are usually cared for by the sick, religious and civic groups. We are the community that will stamp out this disease. I can remember caring about people with AIDs in the 80s when physicians in NC wouldn’t see them. It was a slaughter; people suffered and died without even drugs for pain. ACT UP changed that. They force insurance companies, legislature and doctors to do their jobs. Most of ACT UP’s earliest members where people who already had HIV, loved ones of the dead as well as religious and civic groups.

Google Lyme Disease History and CDC Report: Issues in Public Health Awareness

My biggest issue with Lyme Disease is: until a few months ago I had never heard of it. Look at the rest of the country in the Google Data below. When we compare it to the CDC reporting data we see a huge mismatch. (See both data sets below.)

Even though Connecticut is considered the epicenter of the disease. New York and Pennsylvania surpass Connecticut in reported Lyme cases across the board. (see slide show CDC charts at the bottom of the post) New York does not show up on the top 10 list of states searching on Lyme disease keywords and Pennsylvania is number 8. New Jersey and Wisconsin have a robust increase in the amount of Lyme Disease reprot in their state but little activity on Google. I believe better health messaging are needed in these states. Connecticut is number 1 in Google searches and they also have a declining Lyme disease rate. This is due to excellent public health messaging and legislation.

Other concerns are the "emerging states" such as Maine, New Hampshire, Delaware, Minnesota and Virgina where the amount of Lyme reported each year has grown exponential rather than steady growth as was seen in NY, PA, NJ, CT and WI. These states should be "code red" as they responded too Lyme with a strong public health message in order to slow growth in their state. I recommend a larger presence on the internet with searchable content.

click to enlarge

Anorexia and Lyme Disease - Lyme wasting

"I'm just not hungry" OR "I eat a lot but I don't gain weight"
These are two totally different things. But the can happen cyclically. Keep a food journal for 30 days and talk to a nutritionist about your daily calorie count. Select a nutritionist whose specializes in wasting in HIV patients. Most Lyme patients have wasting not anorexia. The antidepressant drug Mirtazapine in low dose gives you the munchies and is usually enough to over come Lyme wasting. If you have advanced neuroborreliosis then this drug may still be an option for you. It is used to treat wasting in the old folks homes and has not been shown to aggravate dementia.

If you eat until you are sick. Not talking about a spastic colon here. But rather eating so much that you are stuffed and feel sick.

If you throw up your food because you think you have eaten too much or take laxatives because you think you are fat.

If you are underweight AND deny yourself food when you are hungry just to exert self control.

If you are addicted to the euphoria that starving can produce.

These are all signs of an eating disorder. People with Lyme have psychological issues - this points to the progression of Lyme causing bacteria entering the neurological systems. When doctors say that Lyme is "all in your head". Ironically - They don't realize how right they are. Lyme effects the brain in significant ways.

If you eat regular meals of a calorie count that should easily keep you at or above a normal weight. Then you may have wasting. Wasting can also be a plain old lack of appetite. This also happens to people with Lyme. All these conditions need to be addressed by a Lyme doctor who specializes in the long term treatment of the neurological conditions caused by Lyme not a regular GP.

Chronic Lyme Mad Man Sane Man

Sane Man - Question: "You know the difference between God and a doctor?"
Mad Man - Answer: "God never thinks He's a doctor."

Lyme Heroes of North Carolina! Hooray!

Doctors who stood up for your patients and reported their Lyme to the CDC especially after 2005. Praise God for you!

Thank you! You are warriors and heroes in the fight against the Lyme epidemic. I may die of Lyme but you are helping to build a world where my children won't.

Lyme in NC
1347 in 17 years.

North Carolina (NC)
2007-53 (diminished due to Jemsek MB trial)
2006-31 (diminished due to Jemsek MB trial)
2005-49 (first charges issued to Jemsek)
2004-122
2003-156
2002-137
2001-41
2000-47
1999-74
1998-63
1997-34
1996-66
1995-84
1994-77
1993-86
1992-67
1991-73
1990-87

The CDC says that 10X the cases that fit the stringent CDC criteria go unreported. That is total of 13,470.

On top of that they estimate 15X that meet a clinically valid but only partial criteria for the CDC raising number 33,675.

Currently there is only one Lyme doctor in NC - Dr Pittman of Raleigh. However he uses non-traditional medicine. If you want the standard protocol started in Connecticut (the epicenter of the Lyme epidemic) then you will have to go to Virginia or SC to see Dr Jemsek.

Clinical Aid for talking with your Lyme Doctor: Borrelia, Borreliosis, neuroborreliosis, Babesia, Bartonella and Ehrlichia

The link is to an excel spreadsheet I created this to help me talk to my doctors about my symptoms. It has the symptoms for each tick borne bacteria AND a rating scale for both past and present.

http://spreadsheets.google.com/ccc?key=rdmO3VW8zxPoE7alXdCk5VQ

I am quite ill so it took me several days to fill out. I left my scores in so you can get and idea of how someone else with Chronic Lyme feels. Its a lot of work - But it is better to give to much info than not enough to your Lyme doc. I suggest your take your time too. Accuracy is important.

There are no weird viruses in the file. God only knows we don't need a sick computer too. If you find something wrong with the file it let me know and I will try and correct it.

Toxic Encephalopathy

Toxic Encephalopathy - hows that for a punch in the gut. I knew I had neurological issues but I wasn't expecting that.

Lyme Alert - Myth Buster

The Bull's Eye Rash: It is important to note that in a 2002 study, only 9% of patients diagnosed with Lyme disease (culture positive) exhibited this classic pattern. Nearly 60% had a rash that was more general in appearance and 32% had a circular dense red rash.

Note: Yes if you add that up it is 101% but subset of the patients had combination rashes.

The FDA stated as they released the LymeRix vaccine for public use: "The CDC estimates that 85 percent of people with Lyme disease get the characteristic rash."

Note: Yes that is 15% who don't.

IDSA goes CYA as CT Lyme disease bill heads to CT Governor - Hope for Chronic Lyme in North Carolina

Lyme disease bill heads to governor
By Brian LockhartStaff Writer
Posted: 05/29/2009 07:50:58 PM EDT
Updated: 05/29/2009 09:54:21 PM EDT

HARTFORD -- A controversial bill that would make Connecticut the fifth state in the nation to allow doctors to treat chronic Lyme disease is on its way to the governor for her signature.
The legislation, which sailed through the House of Representatives a few weeks ago, 137-0, was unanimously approved Friday afternoon by the Senate.

read the rest from the original source....

This is the bill

General Assembly		Proposed Bill No. 6200
January Session, 2009		LCO No. 2546
Referred to Committee on Public Health
Introduced by:
REP. FAWCETT, 133rd Dist. REP. GODFREY, 110th Dist. REP. HORNISH, 62nd Dist. REP. LYDDY, 106th Dist. REP. REEVES, 143rd Dist. SEN. MCKINNEY, 28th Dist. REP. TABORSAK, 109th Dist.			REP. TONG, 147th Dist. REP. BYE, 19th Dist. REP. HURLBURT, 53rd Dist. REP. HWANG, 134th Dist. REP. DREW, 132nd Dist. REP. BARTLETT, 2nd Dist.

AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE.

Be it enacted by the Senate and House of Representatives in General Assembly convened:

That the general statutes be amended to provide that: (1) A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purpose to a person diagnosed with and having symptoms of Lyme disease if a diagnosis and treatment plan has been documented in the physician's medical record for that patient; and (2) no physician may be subject to disciplinary action solely for prescribing, administering or dispensing long-term antibiotic therapy for a therapeutic purpose for a patient clinically diagnosed with Lyme disease, if a diagnosis and treatment plan has been documented in the physician's medical record for that patient.

Statement of Purpose:

To allow physicians to prescribe, administer or dispense long-term antibiotics for therapeutic purposes to patients clinically diagnosed with Lyme disease.

Next we will look back at Philadelphia in 1837 to see what typhus can teach us about activism and Lyme

So we looked at Yellow Fever and Cholera. Tomorrow it is Typhus - no not Typhoid. Already I am seeing parallels to Lyme Disease. I will wait until we have review all the epidemic before draw conclusions about how we should conduct activism for Lyme Disease.

• Sick stigmatized and left to care for each other
• Infection of the poor and homeless first. Action from the medical community begins late in the game as the wealthy are infected.
• Bickering doctors and public officials making treatment impossible.
• Exodus of a large number of public health and medical professionals that are supposed to help in epidemics
• Panic and exodus spread disease across the US
• Loan Christan's and Civic Groups becoming the true saints and heroes of the epidemic.
• Profiteering by unscrupulous physicians selling poison as treatment.

I am also seeing one distinct difference

Lyme unlike Cholera and Yellow fever Lyme spreads slowly - one vector at a time. This gives us some hope for containing it as long as people stop traveling and relocating. But it is also bad news as it is much like the spread of AIDS slowly infecting one population at a time. Unaware infected people unintentionally spread the disease for many years before becoming ill. So in Lyme it might sound something like this : Unaware infected people are bitten by ticks as they move around the US unintentionally spreading the disease to new tick populations that do not carry it. They are unaware for many years before becoming ill.

I am also noticing; for new and emerging Lyme states that outbreaks are documented around affluent areas where good health care and testing is prevalent. Leading me to believe that the majority of Lyme infections are in the poor and homeless who are suffering without medical care or access to testing.

The Typhus Epidemic in America

There is very little information about the Typhus outbreaks. Here is one doctors account

"A third case; This was a child, whose stomach and bowels were weakly and delicate. A dose of mild physic was given, which was followed by a complete prostration of both stomach
and bowels. The child soon lost all relish for food, became languid and stupid, began to sob, and soon to hiccup at every breath, the pulse became feeble and began to flutter, and the vital spark
was evidently diminishing every moment with alarming symptoms of a speedy dissolution. All this took place within about forty-six hours after taking the physic. Upon the exhibition of the common remedies, no impression whatever was made upon the system.
Our most powerful remedies were then exhibited, which, after a short time, began
to produce a reaction. At this time a dreadful struggle took place, as if between
life and death; this lasted for more than twenty-four hours when, nature having received sufficient aid, gained the victory. The child was then safe, and had a rapid recovery. This
dangerous attack as (he concluded of the prostration or debility produced by mild use of physic)"

Physic was a "cathartic" medicine use in for stomach upset 1837

According to Thomas Sydenham, England's first great physician of the 17th century. Typhus was caused by water contamination from human feces. Ticks, ( Tick-borne typhus fever (Rocky Mountain spotted fever) is caused by Rickettsia rickettsii, Fleas and most commonly Lice picked up the disease first and excreted the bacteria in their feces on human hosts. People scratched the bite exposing raw skin to the bacteria. The first onset of the disease is fever followed by rash and extraordinary pain and bowel issues that where not well documented but sound like constipation. Followed by stupor or delirium that was medicated with alcohol. Secondary infection in the weakened patient was common and the largest cause of death usually from intestinal bleed.

The epidemic claimed mostly the poor who and imprisoned who lived in squalid condition where lice and flea infestation was common. Typhus will eventually kill the louse, though the disease will remain viable for many weeks in the dead louse and its dried fragments.

Treatment:
Treatment a the time was unknown. Although many "remedies" where tried none where consistently successful. Most people who survived did so due to a robust immune system.

Health Care:
Philadelphia understood Decontamination
In past epidemics we see lawmakers and physician fleeing first. But during this epidemic they stayed because they understood the cause and could control getting the disease themselves. As a result panic and mass exodus was quelled and large spread scale of the disease to other areas of the country was sporadic. We do know that banks suspended specie payments. The city of Philadelphia issued "shin plasters." So clearly there was economic stress in the city.

Profiteering:
Small time profiteering similar to today's silver colloidal are trade was at an all time high during this time. News papers are littered with ads promoting, pills and elixir that cure a variety of things from removing beauty marks to curing typhus. None actually worked

Today

Crazy Stuff
Oddly In 1976, a number of letters supposedly containing ticks (a typhus vector) were mailed to businessmen in a number of US cities.

Treatment:Effective protective vaccines that lower the risk of infection, modify the course of the disease, and lower mortality are available, but the duration of the protection is uncertain. Immunization should be repeated every four months as long as there is a danger of typhus.

Antibiotics. Epidemic typhus can be effectively treated with tetracyclines or chloramphenicol. This shortens the course of the disease and reduces the severity of the symptoms.

Surveillance: Conducted mostly by the US military during field maneuvers. Interestingly the best statistic on the spread of Lyme in NC is documented by the US Military at Fort Bragg.

1832 Cholera - New York - Looking back on past epidemics for clues on how to navigate the current Lyme Epidemic

1832 Cholera - New York:
See yesterdays post for Yellow Fever.

Personal note; in NC they are raising the State Employees Health Plan Premiums. One law maker was quoted on the radio as saying "the people who are smokers will pay more and the people whose body mass index is over a certain amount will also pay more.." The sound bite stopped there. I thought to myself... the smoker, the fat... what next? How about the poor they are a huge drain on our health care system. If they just worked hard they wouldn't be poor so isn't poverty their fault? Shouldn't they be penalized too. I think of the food workers at the State legislature buildings that serve that snotty law maker on $7.00 an hour and use the State Health Care Plan. Then who is next? How about the sick? It's there own darn fault their sick anyway. If they lead healthier cleaner lives they wouldn't be sick would they. I hope the specter of a chronic genetic illness like obesity is never visited upon that law maker. You wouldn't wish that illness on anyone. Then who next? What about the imprisoned? They are imprisoned because they are scum why should we pay one red cent to keep them well? Then who next? The US Cholera Epidemic that began in 1832 answers this question in horrify detail and the repercussions of this type of health care distribution are anything but charitable.

1832 Cholera - New York: See yesterdays post for Yellow Fever.

Contaminated Water: The advance of Cholera

The Spread:
Open Sewers and crowded slums
Public wells located in very close proximity to sewers and pools of human waste.
Bacteria is imported on Ships from South Asia, in 1817 spreading to seaport arriving in London in 1831 the fingers of the disease touched New York June 1832

Infected the poor and disenfranchised first. They where blamed for their disease. Officials site their lack of refinement, squalid living choices and godlessness as the culprits.

Many in the medical community said the poor where ‘getting what they deserved’ for being so crass and dirty.

Confusion and bickering between federal and state officials result in the poor management of the disease.

Effective and Ineffective Health Care:
Simple clean water is the cure for Cholera. Unfortunately the stick where given water that was contaminated. To compound the problem dehydration was used as a treatment.

Most physicians left New York to save themselves and their families.

While Protestants fled the city poor immigrants, mostly the Irish, had to stay for economic reasons. Nuns and priests also remained most notably “The Sisters of Charity performed heroic service, and many of them died in the course of service to the sick

The elite fled the city including public officials and physicians in mass exodus. Confusion and bickering spread through the medical community around all aspects of the disease quagmiring any hope for a cure. There was little bickering over the cause: most agreed lifestyle choice was the culprit.

Miasma Theory was perpetuated: It asserted that the diseases was carried in miasmatic particles suspended in foul smelling vapor. Infection was a result of breathing polluted air, dirty homes and dampness. Great effort was made to rid the city of garbage, dirt and dampness with little effect on the disease.

The hospitals began closing their doors. Small groups of remaining public officials to extra measures, including converting banks, schools, and abandoned buildings into medical facilities. They addressed living conditions among the poor and started providing temporary public housing

Quarantine turns out to be one of the most effective ways to control the spread of disease but does little more than abandon the sick and dying in their homes.

Record Keeping
As in the case of yellow fever Cholera record keeping is sparse because the record keepers, ministers and grave diggers fled the city.

Profiteering
Alchemy and treatments, including laudanum (morphine), calomel (mercury) as a binding laxative, and camphor as an anesthetic. High doses sometimes did more harm than good. Poultices of mustard, cayenne pepper and hot vinegar were also applied, as well as opium suppositories and tobacco enemas

Looking Back

So what was Cholera? Water Contaminated by the human waste of a person carrying Cholera. Trusting the city water system made people sick not a life style choice. However inappropriate disposal of human waste is a personal choice. However during this time inappropriate disposal was common and transcended race, creed and economic status.

Who was affected most and least: Poor people suffered most as it was their areas of town that suffered from over crowding and poor waste disposal that seeped in to the local wells. Cholera spread quickly through out the US and soon the rich and poor shared the same poor treatment. In New York the epidemic left 3,515 dead out of a population of 250,000 (or 1%).
A strong contrast to the 10% of Philadelphia's population during the first few months of the Yellow Fever.


Treatment for Cholera:
The most effective relief came only 20 years after outbreak 1854, when a London physician, Dr. John Snow, who was battling the cholera outbreak in London, established the connection between contaminated water and cholera.

Today, in areas where antibiotics are limited it is just time and lots of pure (bacteria free) water. In "First World" countries antibiotics are readily available along with IV fluids.

Prevention: It was 1883, 51 years after the epidemic started that the bacterium causing cholera was discovered.

There has been tremendous effort to updated third world countries with purified water.

Surveillance: This important component of Cholera containment allows world health organizations to target areas for water system improvement and education.

Personal Note:
Lyme symptom index = 6. Yesterday was terrifying. At 2:37 I was struck with flu like symptom that washed over me in minutes. Leaving me vomiting at my desk at work. I reached to my mouse only to find Parkinson's Tremors had set in so sever that I could not use my computer mouse, keyboard or phone. My feet began tremoring. I could barely drive the shaking was so intense. Muscle fatigue swept over me so that I could barely walk. I staggered to my front door - closed it and laid down on the floor.