Everyone should read this Virginia report

Hi everyone,

I grew up, and contracted Lyme, in Virginia, whose governor has recognized Lyme as an epidemic and an immediate threat to people's health. I live in Washington, D.C. now, where doctors seem comparatively ignorant about Lyme, believing that it is easily cured with a couple weeks of doxycycline. I know this belief is shared by the greater medical community throughout the country and in other parts of the world.

If you've encountered the political consequences of Lyme, then I strongly encourage you to read and share this report: https://www.vdh.virginia.gov/epidemiology/DEE/Vectorborne/Governor%20Lyme%20Disease%20Task%20Force%20Report.pdf

It is in many ways very progressive and it supports patient rights with respect to Lyme disease. I'm sort of amazed that my home state is so ahead of the curve on this--but the governor's task force and its findings can be used as models in other parts of the country and world, as well. While a "task force report" may sound daunting, just give it a read. It's actually very concise and jargon-free.

Here are some highlights. Please forgive the crazy formatting; the text below is copied from a PDF document...please use the link above for easier reading, printing, and sharing.

General Observations
• Lyme Disease and other tick-borne related illnesses are
affecting significant and growing numbers of Virginians
• These diseases are present in every region of Virginia
• Virginia is in a particularly vulnerable geographical location,
being at the crossroads of the frontline of expansion of Lyme
disease carrying ticks from the North and other tick
populations that have entered Virginia from the South, the
public health risks of which are uncertain. These diseases can
have significant, life-altering impact on patients, especially
when the diagnosis is not made shortly after the patient is
infected.
• Lyme disease is caused by a spirochete bacterium in the same
family as syphilis. It can invade multiple organ systems and
has a variable multi-stage progression with a tremendous
range of symptoms. It is thought that humans develop no
long-term immunity and there is no available vaccine.
• There is much that remains to be understood about Lyme and
related diseases in every relevant sector including diagnosis,
treatment, and prevention.
• There is an acute need for greater research in all relevant
spheres.
• Medical personnel need accurate, fact-based information
about prevalence, diagnosis, treatment, and prevention of tickborne
diseases. It is critical to raise awareness in the medical
community about Lyme and other tick-borne diseases.
• The mandatory reporting of Lyme disease to the Virginia
Department of Health (VDH) can be overlooked or forgotten by
some medical providers, leading to an undercount of the
number of patients affected.
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• The CDC case definition for Lyme disease is for epidemiological
purposes only and is not now and never has been the singular
valid basis for a diagnosis of Lyme disease.
• Public awareness concerning the prevalence, symptoms and
prevention of Lyme disease needs significant expansion.
• Significant improvements that can help to prevent Lyme
disease are possible. This will require a concerted,
multifaceted effort requiring the cooperation and action of
every sector of Virginia—governmental, private, business,
community, family, and individual.

Post Edited By Moderator (Traveler) : 4/9/2015 5:47:17 PM (GMT-6)

Treatment
1. There is no serological test that can tell a medical provider
when a patient has been cured of Lyme disease.
2. A typical criterion that a patient is well is when the symptoms
have resolved and the patient feels better.
3. There is no scientific basis for concluding that 30 days or less
of antibiotics is sufficient treatment for every case of Lyme
disease.
4. We received substantial testimony from lay witnesses that they
had been successfully treated with long-term antibiotics.
5. Expert testimony regarding effectiveness of long-term
antibiotics conflicted. We encourage additional studies to
evaluate the effectiveness of long-term antibiotics as treatment
for Lyme disease.
6. The Department of Health Professions should inform its
licensees that the department does not target clinicians for
disciplinary action by virtue of their antibiotic choice of
management of Lyme disease.
7. Lay witnesses expressed displeasure with the propensity of the
medical community to treat persons who were ultimately
diagnosed as late stage Lyme disease, to need psychological
evaluation or treatment. Lay witnesses testified this was often
done in a demeaning fashion and appeared as an excuse for
the medical community’s failure to adequately understand the
problem of Lyme disease.
8. Lay witnesses stated that long term treatment of Lyme disease
is often not covered by their insurance carriers and that they
can spend thousands of dollars per month for their treatment
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plan. The extent to which this is occurring is unknown to the
Task Force and the Task Force recommends that this issue be
evaluated by the Bureau of Insurance.
C.
Public Education and Prevention
1. It is a public health goal of a high magnitude to ensure that
the general public and medical community become fully aware
of the risk of exposure to Lyme and related illnesses and the
severe medical consequences that can arise when this disease
is not promptly diagnosed and treated. Developing an
appropriate sense of public urgency is the greatest single need
in the efforts to prevent and treat Lyme disease. The Governor
and VDH should expand their current programs of public
education to place significant and regular emphasis on Lyme
disease so that the public understanding is proportional to the
serious nature of this threat to public health.
2. Since ticks often carry multiple pathogens and we received
testimony that many Virginians have multiple tick-borne
illnesses that may require comprehensive analysis and
treatment, the public should be educated on the presence of
co-infections.
3. The VDH and other appropriate state and local agencies
should place greater emphasis on public education through
modern media. In addition to printed brochures, public
interest radio and television ads should be developed. The use
of the internet should be dramatically amplified. Major
internet information organizations—especially those
headquartered in Virginia—should be asked to consider
donating space for articles and announcements. An increased
effort to work with the journalists of Virginia to develop
appropriate stories to alert the public should be considered.
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For example, Old Dominion University scientists presented
their unanticipated discovery of two additional tick species in
Tidewater some of which carried an infection that is a cousin
of Rocky Mountain Spotted Fever. This example demonstrates
the imperative for better communications on all fronts.
Budgets appropriate for these purposes should be developed.
4. It is essential that the Virginia approach to Lyme disease
prevention and treatment involve collaborative work of all
branches of state government and coordination with all facets
of local government. The Governor should consider convening
a task force of state and local officials to create a bestpractices
model for government within the Commonwealth.
For example, it is imperative that public schools and
departments of parks and recreation consult with public
health officials to properly manage facilities to prevent
unnecessary public exposure to ticks—especially for
children—and that warning signs be posted at points of public
access in areas that are high-risk.
5. As a part of the efforts to inform the public about safe
practices (e.g. how to keep your yard free from ticks), the
Commonwealth should clearly communicate the expectation
that government agencies actually implement the same
methods being recommended to the public. For example, if a
public school sends a tick prevention brochure home with a
student, but does not actually implement the recommended
practices on school property, there are two dangers that arise.
First, children are unnecessarily exposed to ticks while at
school. Second, the failure of the school to implement the
practices signals to the parents that the situation is not truly
important. Government must practice what it preaches if the
public is going to give Lyme disease prevention the serious
attention it deserves.
6. The General Assembly may wish to consider amending the
Code of Virginia in order to authorize localities to establish tick
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surveillance and control districts. (Rationale: Localities are
already authorized by the Code to establish mosquito control
districts. Providing a mechanism whereby localities could
form tick surveillance and control districts could be beneficial
to many localities, particularly in Lyme endemic and emerging
areas, by allowing the development of practices and policies
designed to decrease tick populations on locality property
frequented by the general public such as public parks and
schools.)
7. The Governor should establish a working group, under the
auspices of the Secretary for Natural Resources in
collaboration with the Secretary of Health and Human
Resources, to develop guidance and potential strategies for
localities that wish to attempt deer and/or tick population
control. The Governor should include funding in the 2012
Budget Bill that is sufficient to adequately support this
initiative. (Rationale: Developing guidance in this manner will
allow for the development of control strategies that are more
comprehensive than either Secretariat currently offers in
regard to Lyme and other tick-borne diseases.)

Thank you, American Lymie! I will be using this to help get something done in my state (arkansas).

Fronton, I was born in Fairfax and grew up from age 6+ in Loudoun County. My story (as relates to my health) is long, as I know is the case for a lot of people. I'll try to make it as concise as possible via a timeline:

~2005-06: I had had occasional sudden blurred vision and hearing loss on and off and never thought much about it since it was always "normal" for me. In my mid-20s, I suddenly found night driving dangerous and started getting tinnitus.

~2007-08: Started experiencing occasional peripheral neuropathy--"pins and needles" pains--in my extremities and my legs would occasionally go so numb I couldn't really feel anything. This interfered with driving so much that I moved into the city to be much closer to work.

~2009: Out of nowhere, I began to get breakouts of hives. It first happened in a hotel room in Chicago, and I thought at first it must be bedbugs or something. But from the day it happened, it happened daily for a long, long time. I also started experiencing a strange phenomenon in which my legs would get hot, turn bright red, and sometimes itch every day at around 4:00 p.m. and then fade within about an hour. This happened just yesterday.

April 2010: My body finally got my attention. I was out for a walk, and I literally thought that there had been an earthquake. The ground shook under me to the extent I almost fell down. But I noticed no one around me was panicking and after a moment realized it had been an internal sensation. Shortly thereafter my head was spinning and I had such extreme pains in my feet and legs that I had to sit and then find a taxi to take me home. This was when I went to doctors about this issue for the first time.

Doctor summary no. 1: My doctor was alarmed and ordered a bunch of blood tests and MRIs. All were normal. She sent me to a neurologist who ordered an EMG/NCV, which was normal. Afterwards, the neuro sat me down and said I am lucky I don't have multiple sclerosis and that something could possibly be wrong with me, but in his professional opinion I seem to be highly stressed, have a stressful job, and he recommended that I take a vacation and find a therapist. That was the end of that relationship. I should note that he did ask me, "have you ever been diagnosed with Lyme disease?" and I answered, "my mother says that I was diagnosed and treated for it when I was younger, but I don't remember that." He said, "when was that?" and I told him, "I guess around 1996." And he said, "that was a long time ago. You obviously haven't had Lyme all this time." And I said, "well, you asked if I have EVER had Lyme, and so I was just answering your question." He said, "OK, well, it was obviously cured." I did find a therapist who I have seen monthly ever since. She is an MD and she immediately ordered a bunch of additional tests, including hormones, and put me on some supplements such as GABA that some people believe are effective for nerve pain. I respect her because she respects me and never questioned the reality/physicality of my problems, while focusing on treating my anxiety and depression.

April 2012: Time passed and strange symptoms came and went, and I lived with them. In 2012, everything escalated. I began tripping, had "floppy foot" (which again made me think MS), couldn't think straight, actually became disoriented in a way that I think of as dementia--I got lost in my own home town neighborhood--had all kinds of nerve pain, double vision, and one of my legs stopped working (full paralysis) *while* I was walking down a broken subway station escalator, so I had to hop down on one foot. That was the point of no return for me. Back to my doctor, more MRIs, another neurologist--this one very respectful. Lots more tests, and all were normal. No explanation. I had to live with it, so I did, and eventually things improved a bit. I was basically convinced I had MS.

November 2012: Out of nowhere, I got a throbbing pain in my right eye and within minutes it felt like someone was ramming a live electrical wire in my eyeball for about an hour. It was so sudden and painful I didn't know what was happening. I called the neurologist the next day and they said it doesn't sound like trigeminal neuralgia, and so it's probably not related to MS. It happened again the next day, again at 7pm. This persisted for the entire month of November, always at 7:00 pm or 3:30 pm. I was later diagnosed with cluster headaches. Fortunately, November 2012 is the only cluster I've ever experienced and I pray it won't ever happen again.

December/January 2012: I somehow injured my elbows and shoulders--the joints were extraordinarily pained. Any slight movement or pressure was torture, so I became bedbound. This lasted for about three months. I had never had any joint/bone problems before and it was very confusing. I talked to the neurologist and they said that's not a neuro issue and to see a rheumatologist or orthopedic surgeon. Eventually the pain improved and I tried to work out a little bit again. Leading up to this point I had managed to be fairly active...in my 20s, I worked out about 5-6 days a week. By this point, it had been 3-4, although I had gotten to a point at which becoming very hot also made me disoriented and upset my vision to the point I couldn't find the locker or see the lock in the locker room and had to cool down about 10 minutes to be able to find my stuff. I've resorted to texting myself locations of things like that, or where I parked my car, so that I can find things because my memory fails more often than not. Anyway, the pain in my elbows and shoulders was such that I could not work out at all anymore.

2013: I went to a rheumatologist as instructed, in particular to complain about a new pain: the sole of my feet had become so sensitive when I step on them that it was difficult to walk. It felt like a joint issue and the neurologist had said to see a rheumatologist about joint problems, so I did. This was a weird appointment to me: she discovered a lump in the palm of my hand and diagnosed it as Dupuytren's contracture, and from that point on, it is literally all she would discuss with me. I said I was there because of foot pain, and she simply didn't care. We didn't discuss it. So I gave up on that. (Dupuytren's contracture isn't immediately threatening.)

September 2014: As I was getting ready for work one morning, I felt a little wave of dizziness, which is common for me. But this time, in a way similar to the onset of cluster headaches, by the time I felt it, I was already pretty far into this ride. I felt nauseated and got up to go into the bathroom and by then had such extreme vertigo I could not walk. I crawled into the bathroom and vomited for hours. I couldn't even call in sick; I was completely incapacitated. I kept throwing up and my body felt like it was going to burst into flames, so I got in the shower with my clothes on and ran cold water and, honestly, I just accepted that I was about to die. It was the scariest thing that has ever happened to me. I thought it had to have been a stroke or at least a seizure. I crawled back to bed, sopping wet, eventually and passed out for about five hours--and then had to explain to people at work what happened. They said "sounds like food poisoning." I went to my doctor the next day and they did an EKG (normal) and ordered MRIs (normal). They also referred me to an ENT. I had to go out of town the next week for work, and then my father had a major surgery for an aneurysm, and I helped with the recovery through the holidays, so I didn't make it to the ENT until January. I told you this was an epic...we're almost at the end/present. :)

October 2014: Went out of town for a conference and coming out of the shower, the way the bathroom was lit highlighted the scores of silver and pink stretch marks all over my body. I have huge ones on my abdomen, hips, shoulders, chest, arms, and smaller ones completely covering my flanks and even on my knees. I did used to work out a lot, but I was never half as muscular as the guys you can commonly find on TV who have flawless skin. Still, I always figured I had cursed skin because I had such bad acne as a teenager. I figured I am just especially prone to stretch marks...but I have a serious psychological complex about it and try to ignore it so as not to let it get to me. This will become important later...

January 2015: Went to brunch with a friend of mine, two blocks from my apartment. I was excited; hadn't seen her in years. We ordered, we were eating, and I started to get hot. She asked me if I was OK. I was sweating like crazy. Then I started to get dizzy. She thought I was having a panic attack. I told her I needed her to walk me to the bathroom--I couldn't walk on my own. I threw up. She paid, we left, and she had to drive me home. I couldn't give her directions because I threw up every time I opened my eyes--about six times on the two block ride, then again in front of my building. She walked me up to my apartment and asked if I wanted her to call 911. I said no, came inside, and collapsed. The vertigo lasted about five hours. Went to ENT specialist. Had a hearing test and I 100% expected them to tell me the test was normal, even though I have hearing problems...up to this point, ALL my tests were always normal and I had always wondered if I really could be crazy. Lo and behold, the doctor had a printout and he told me I have 50% hearing loss in my left ear, all in the mid tones, in a pattern that is typical of Meniere's disease, which causes debilitating vertigo and progressive hearing loss. It was the BEST NEWS I had had in years because for the very first time a doctor AND a lab test showed conclusively that all this is not in my head. It gave me so much of my confidence back, and actually made me a little angry at the medical community almost instantly because I realized I have been pursuing help for myself and finding a lot of resistance. I do have some good doctors, but I've encountered many who have suggested that everything is just a manifestation of stress. When doctors don't know something, many tend to believe that they don't know because there is no problem--as if it's impossible that there's simply something they don't know yet.

By some incredible coincidence, the same Friday I saw the ENT specialist, my mother emailed me something that changed the game. She had found a photocopy she had made of the Rx I was given when I was diagnosed with Lyme disease. She said she had never really heard much about Lyme and thought it sounded exotic and strange, and so she felt compelled to keep a record in my medical file. The Rx was dated 1997 and was for 200mg of doxycycline for 14 days. I immediately started researching Lyme and thought, wow, it really does sound like multiple sclerosis and this could explain so much. I had been tested twice for it, both ELISA tests via LabCorp, and the tests were negative...but now I was reading how poor the tests are. And THEN. I read about bartonella rashes, and I saw pictures, and I thought HOLY ****, is it possible I am covered in rashes and not stretch marks?

I emailed the famous Dr. J's office, but never got a response. Meanwhile, my sister, who works in Loudoun County, VA, has a friend who has chronic Lyme and he recommended to her that she send me to his doctor. I am not going to give that doctor's name here, but feel free to contact me privately. The doctor took so much time with me and spoke to be SO respectfully--not even a single moment when I thought she was talking down to me as I've experienced with most other doctors who say things like, "that's a big word! How do you know that?" (Well, I wrote about medical issues and read NIH studies for over ten years, but you didn't ask, did you?) I was hesitant to let this doctor see my skin because I'm so ashamed of it, but she saw it and said it is absolutely, without any doubt, bartonella. When I began my antibiotic treatment, all of the "stretch marks" became inflamed and burned like hell for the first week. The foot pain from two years ago returned immediately, as did the brain fog, and many other symptoms. I saw my dermatologist for my first-ever mole check a couple weeks after I met the Lyme doctor and he confirmed that there is no way in this world that someone my size, even if I have occasionally gained/lost 10-15lb, would have this many stretch marks all over unless I had Marfan's or Cushing's syndrome or something like those.

So anyway, that brings us to now. I'm one of those people who has been put through the doctor mill and to whom doctors have repeatedly suggested that I am really just an anxious person who needs to chill out, or that I have mental problems. I was fortunate to find a psychiatrist who is respectful and investigative, and she has insisted even when I have run out of options and wondered if I could be delusional that I absolutely am not and that something real is happening to me. And I've been fortunate to find some good doctors--and in this category I include both doctors who know more than others, and doctors who may not have all the answers but who say "you know, we don't have all the answers; there's a lot we don't know yet" instead of "your labs are normal, you look OK, so I really think you just need to take a break and try to relax."

For what it's worth, I've covered this in other threads, but my ELISA and Western blot both came back negative. However, my C4a complement is 19,800 (the normal range is 0-2,800)--off the charts--and I'll see the doctor again in a couple of weeks to evaluate whatever the next steps are. The doc said there is an absolute positive clinical diagnosis for bartonella based on the rashes alone, and especially combined with all the symptoms including foot pain and neurological problems. I'm anxious about what'll happen next, but at least I know now that although something serious is wrong with me, it's not an overactive imagination.

I think I enabled it?

I live in WV but they don't say it's an endemic area, I guess it stops at the border. I know a lot of people here who have Lyme.

I can't get the hyperlink to work for some reason but if you copy and paste the following it comes up:

www.vdh.virginia.gov/epidemiology/DEE/Vectorborne/Governor%20Lyme%20Disease%20Task%20Force%20Report.pdf