Lymes Disease

[Koolblue13]

So a sad update. I helped bury my friends dog last night at 3 a.m. The Docs weren't sure if it was initially caused by the Lyme or not. They think it caused his liver and kidneys to fail and then from possibly drinking puddle water, his system couldn't clean it out. He went from an energetic little 13 month old pup to a quivering mess in less than 5 days.

I don't know if anybody remembers my thread last year about my friends dog getting shot by the cops for being a Pitt Bull and chasing livestock, but it's the same friend. He didn't want a dog, but his parents got him for him at Christmas. It was one year to the day and he isn't doing so well.

[Heisenberg]

Sorry to hear about that Koolblue. My family's dog is having surgery today on her leg and I am hoping for the best. I imagine that losing a dog that young is extremely hard to deal with.

[Koolblue13]

Good luck to you and your dog JMU.

[RonJeremy]

Lots of good info in this thread. I found a deer tick on my shirt Saturday afternoon after I took my son horseback riding. I have been paranoid ever since that I one or both of us got bit. I didn't find any other tick's but I am still checking daily. I didn't realize they would be out this early....apparently I was wrong. I also will be applying repellent with DEET to both of us from now on!

[Predicto]

=Sorry to hear about your loss.

Just wanted to add that there is a theory out there that some people diagnosed with Multiple Sclerosis are really suffering from chronic Lyme disease.

The problem is that the traditional test for Lyme is a lousy and unreliable test, and there is a ton of infighting among the Lyme experts about how to test for the disease at all, and how widespread it may be, and whether it can become a chronic low grade condition.

[The Villi Phanatic]

Just wanted to add that there is a theory out there that some people diagnosed with Multiple Sclerosis are really suffering from chronic Lyme disease.

There are actually a number of diseases in addition to MS (Parkinsons comes to mind off the top), which are purported to varying degrees to be misdiagnosed when in fact an underlying lyme/TBI infection is present and likely causing the symptoms. I've read of numerous people diagnosed with MS and then diagnosed years later with lyme and progressing substantially after switching treatment accordingly. I've also come across a number of sources for diseases such as MS and Parkinson's in which patient autopsies revealed the presence of lyme spirochetes.

Additionally, a number of people suffering from diseases like fibromyalgia, CFS (chronic fatigue syndrome), IBS, etc. which are basically just descriptions of symptoms and not diagnostic of a cause, may have lyme playing a contributory role, if not a causal role towards their symptoms. It's amazing how many diseases/conditions are actually of this nature and treated as such without any real, continuing investigation into what is causing these symptoms. Hell, my initial diagnosis from my first neurologist was persistent, daily headache. :doh: Real groundbreaking diagnosis there as to what was causing my symptoms, cleared things right up.

The MS connection is very interesting from what I've seen though I have a somewhat limited knowledge of MS. I know both MS and lyme are demyelinating conditions, which is I believe the main basis for the plausability of misdiagnosis from a biological standpoint. I've also seen an extensive analysis of the geographic mapping of MS diagnoses in the US in relation to the diagnoses of tick-borne vector illnesses, which further lends credence to the potentially high number of MS diagnoses which may have an underlying infectious cause.

If I'm not mistaken, the primary, or at least a primary treatment for MS is steroids and immunosuppresant drugs. Unfortunately, these drugs would consequently be very damaging for people suffering from infectious diseases like lyme as the immune system is needed to fight off the bacteria.

[The Villi Phanatic]

The CT Attorney General Richard Blumenthal initiated an investigation a year or 2 ago into the IDSA for how they formulated their guidelines on lyme disease treatment and diagnosis and just released his findings this week:

http://www.norwalkplus.com/nwk/information/nwsnwk/publish/News_1/Attorney_General_s_investigation_reveals_flawed_Lyme_disease_guideline_process1257.shtml

"Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America’s (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

'This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,' Blumenthal said. 'My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."

- Not sure how much will end up changing as a result of these findings and the consequential effect of the IDSA having to reassess their guidelines with an indepently assigned arbiter being involved, but it's certainly good news for lyme patients and doctors nationwide (and perhaps also those who aren't yet diagnosed and may now stand a greater chance of getting diagnosed and treated earlier in the disease's progression). It's good to see Blumenthal stayed the course with his investigation in spite of pressure from the medical community to terminate the investigation prematurely as they, of course, didn't deem it necessary.

oh, and Koolblue, sorry that your friend's dog passed away...

[Predicto]

The CT Attorney General Richard Blumenthal initiated an investigation a year or 2 ago into the IDSA for how they formulated their guidelines on lyme disease treatment and diagnosis and just released his findings this week:

http://www.norwalkplus.com/nwk/information/nwsnwk/publish/News_1/Attorney_General_s_investigation_reveals_flawed_Lyme_disease_guideline_process1257.shtml

"Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America’s (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

'This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,' Blumenthal said. 'My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."

- Not sure how much will end up changing as a result of these findings and the consequential effect of the IDSA having to reassess their guidelines with an indepently assigned arbiter being involved, but it's certainly good news for lyme patients and doctors nationwide (and perhaps also those who aren't yet diagnosed and may now stand a greater chance of getting diagnosed and treated earlier in the disease's progression). It's good to see Blumenthal stayed the course with his investigation in spite of pressure from the medical community to terminate the investigation prematurely as they, of course, didn't deem it necessary.

...

Fascinating stuff.

[The 12th Commandment]

I had to go through a battery of lyme tests before they would dx MS. The symptoms are almost identical and most people with MS are aware of the chance of misdiagnosis these days. It's quite the topic of discussion on the MS boards.

When density maps are created for both diseases they overlap very frequently. I suspect there is some connection though the best docs in the world haven't been able to figure it out yet.

[The Villi Phanatic]

Fascinating stuff.

The more I read about the results of this investigation, the more promising this sounds that it may be the beginning of the tide really changing, perhaps even extending into other areas of our medical system besides just lyme disease. I'm cynical by nature at this point due to what myself and others have experienced personally as well as the histories of organizations like the CDC, FDA, IDSA, etc., but who knows, and there's no reason not to have a bit of optimism after something as groundbreaking and positive as this happens. Great timing too as there's a bill in the House and Senate that I think needs to get out of the committee soon or not be presented again until the next session (or something along those lines, I'm just becoming familiar with how these processes work). Either way, the IDSA was of course on the frontlines in opposing this bill so this ruling could potentially have some broad implications.

Some more information on the investigation and resulting settlement (from http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20080502/LOCAL13/805010368/1032/LIVING)

"The groundbreaking settlement announced today forces a complete review of the IDSA guidelines by a new panel free from conflicts of interest, specifically excluding previous panel members. This panel will consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine.

...

This is the first-ever antitrust investigation against a medical society's guidelines development process.

...

The IDSA guidelines are treated as mandatory within the medical community. More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical boards. The guidelines can also result in financial problems for patients, since insurance companies refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions."

- As for the reference to the 50 physicians above, that has been one of the most egregious aspects of the political situation with lyme the past ten or so years. Numerous doctors have been investigated, had their medical licenses suspended, and gone to court spending a host of resources, time, and money to defend themselves and their practices due to the treatment of patients with chronic lyme disease. And during all this, their patients are forced to find other doctors from an already limited number to continue treatment or go without treatment.

Furthermore, numerous other doctors who were treating lyme either stopped or modified their treatment protocols as a result of this pressure. When I was strongly considering lyme as a likely culprit for myself a little over a year ago, my mom was discussing lyme with a friend of hers and found out a pediatrician in our area (NJ) was no longer treating lyme in children, presumably due to this cracking down from medical boards and whatnot. If it's that difficult to get properly treated and diagnosed in NJ, which is one of the top states in lyme incidence, you can guess how hard it is in states where lyme isn't endemic.

[bigdee]

My Pit-Bull was diagnosed with Lyme Disease this past Sunday. I first noticed him limping around on his left foreleg on Thursday and I figured he would be fine in a few days since he is always running into things full speed. But by Saturday night his forelegs had become completely paralyzed and I had to rush him to the vet emergency center. They put him on Doxycycline and Prednisone and he has already returned to his normal self, but now I worry if I have been bitten by the same tick that got him.

[DCsportsfan53]

Fascinating stuff.

It is but at the same time, man it gets discouraging after awhile. Every single public decision, every law, everything that happens around us in our lives it seems has ONE single factor as the #1 priority and consideration....the almighty dollar. It's more important than health, it's more important than happiness, it's more important than justice, quite frankly, it's more important than life itself in our society. It's like every single thing you deal with in life ends up coming back to money. Man I find that frustrating.

[Predicto]

It is but at the same time, man it gets discouraging after awhile. Every single public decision, every law, everything that happens around us in our lives it seems has ONE single factor as the #1 priority and consideration....the almighty dollar. It's more important than health, it's more important than happiness, it's more important than justice, quite frankly, it's more important than life itself in our society. It's like every single thing you deal with in life ends up coming back to money. Man I find that frustrating.

Well, it kind of has to be that way. We want public decisions to take into account the costs as well as the benefits, and financial costs are one of them.

[DCsportsfan53]

Well, it kind of has to be that way. We want public decisions to take into account the costs as well as the benefits, and financial costs are one of them.

I guess what I was saying was, it's frustrating to me that whenever it has to come to a decision, it seems like the financial costs always win out at the expense of people.

[The Villi Phanatic]

I figured I'd give a heads up for those who may be interested on this board since many posters live in the MD, DC area.

The lyme disease documentary "Under Our Skin", which debuted at the Tribeca Film Festival in NY a couple months ago, will be shown a few times over the next week at the Silverdocs Film Festival in Silver Spring, Maryland. The information for the film's showing at the festival can be found here: http://silverdocs.com/festival/films/2008/under-our-skin/ It looks like there's a showing tomorrow afternoon, one on Saturday (though I think it's only for those with festival passes and not just individual tickets), and a final one next Monday night.

The film's website and a trailer is located at the following link for those who want to check it out: http://www.openeyepictures.com/underourskin/

There are also some articles and segments in the regional newspapers and news broadcasts corresponding to lyme disease and the documentary being shown at the film festival. One link I came across is a short article from NBC, which gives a very brief overview of the treatment and diagnosis disputes and the documentary: http://www.nbc4.com/health/16622566/detail.html

It also mentions that "the number of Lyme disease cases in the Washington region has more than doubled in recent years", and I remember seeing similar information of increased diagnosis rates in the MD area in articles from a month or 2 ago.