Lyme Disease And Treatment

[goldicedance]

Yesterday (Tuesday, May 15) the Washington Post featured an article about Lyme Disease and treatment controvery in its Health Section. It noted that a LLMD from North Carolina was suspended from treating Lyme patients for a year (with further evaluation) given his controversial approach of treating with long-term IV antibiotics. http://www.newsobserver.com/102/story/451322.html

Thought you all might find this interesting.

Lois

[MomtoGiuliana]

There was a similar case in PA awhile ago.

This article certainly points to the risks of long term IV antibiotic therapy.

Katherine

[DancingLight]

Lois,

Thank you for posting that article. There was also an article in Forbes or Fortune (mental block, sorry) recently about the controversy surrounding Lyme treament and that doctor in particular. It focused on the money making aspect that Lyme doctors can get into.

I AM being treated for chronic Lyme disease, but it is a huge leap of faith. I DO believe in Lyme and chronic Lyme disease. I just think it is so important to make sure that you feel safe about the doctors making the decisions and that you have ruled out every possible diagnosis. Lyme can mimick many other diseases.

I AM seeing improvements on treatment...but it is very slow. Still it is the first thing that has helped me in a long time. As most of you who've known me on the boards for a long time know--I have been sick for nine years and refractory to all treatments--both conventional and more unconventional ones.

I am seeing a doctor that practices out of the basement of his home...and he sells no supplements or high-tech alternative treatments...so I know and feel sure that he is not in this for the money.

Some LLMDs I fear are also too quick to diagnose Lyme and not cautious enough. One doctor I called only used on test called the Bowen test, 98% of which come back positive. I did not feel this was thorough enough.

I've seen Lyme popping up on the board a lot lately and I just haven't been able to post lately...so I wanted to chip in on this thread and hope folks see it. I just want those who have or think they might have Lyme to be careful. There are good and bad doctors in the field just like in ANY other field of medicine. Lyme gets and extra bad rap for many political reasons that I won't go in to.

Chronic Lyme I really believe is REAL. I believe that one day we will say...why did we dismiss those people? Like we used to do with CFS. Or MS before there was a 'test'...

Just be careful and be smart about the decision to be or not to be treated for it....that's all.

And weigh the pros and cons of treatment carefully.

I have chosen to take oral abx (well, honestly, my doctors believe there is NO choice for me b/c I would be too sick from IVs). At this point, I've taken fewer doses of minocycline than a teenager with acne would take for a course of treatment! Still, it's a risk and it's a leap of faith. It's a very personal choice.

Sorry, went off on a tangent. I just don't want people getting hurt by bad LLMDs and I don't want people missing Lyme if that's what they really and truly have. It's so very hard and we still need the research to show more--but it's not there b/c there is no funding and the CDC does not really believe in it.

I have found with my LLMD that he is so passionate about what he does and cares so deeply for his patients. He sort of ended up in Lyme by accident b/c he is in one of the most highly populated areas for ticks and lyme disease. He went into general practice after medical school and then just started seeing Lyme patient after Lyme patient, until that became his specialty and his passion.

He is also very conservative about the meds he uses and very cautious. The medical folks are definitely out watching LLMDs VERY closely and trying to put them out of practice...so it is prudent it they are responsible!

Oh my have I rambled. Lyme is controversial, complicated and it's extra fun on top of an already confusing illness such as Dysautonomia!

Okay, off of my soap box.

We have several Lymies/POTsies on this board who have truly found that Lyme was the cause of their ANS problems....and I think I might be on that track. I hope so!

Later alligators!!!!

Emily

[doctorguest]

Here is something else to consider in cases where people get better with antibiotics: Some antibiotics have anti-inflammatory and other, yet unidentified, properties that perhaps may influence the peripheral nervous system, neurotransmitters, etc. My personal opinion, unsupported by any concrete data because there is none at this point , is that the prevalence of the actual Lyme disease is probably less than what's being diagnosed, i.e., Lyme is probably over-diagnosed by LLMDs. Thus, the fact that the antibiotics treatment is working for some people does NOT in reality support an infectious agent as the cause. There are clear risks with the extended use of antibiotics - thus, physicians loose licenses, etc. - so this is not like taking vitamins. I will not get any further on this controversial topic, but I will say that the first rule in medicine is to do no harm. It's unfortunate, and in some cases, illegal, when greed, ignorance, ego, etc., override this rule.

[Sophia3]

Goldiedance

Thanks for posting this article. This stuff alarms me to no end for desperate people. SCARY stuff. I just now had the energy to read this....holy smokes.

Doctorguest

Thanks for giving your input.

LONG TERM ANTIBIOTICS is insane in my book in this overly antibiotic-used world.

There are MANY money making docs in this area on FM, CFS AND Lyme. Frankly, I think it's dangerous but I am not here to stir up debate but am amazed how many feel CRUMMY with 'Lyme dx' even after "months/years" on antibiotics. Heaven help them if they get a really bad infection and are abx resistant.

But I grew up in a family where you never EVER TOOK ANTIBIOTICS unless there was proof you needed it. Period.

No offense to any Lyme pts.

[DancingLight]

Lois,

I printed the article and read it...and it was dated way back from June of 2006??? The case against this doctor has been ongoing. The article in Forbes was just recently...

Doctorguest,

I will agree that Lyme is overdiagnosed...but I think other things are too. And I will agree that there are doctors who are out there just for the money in Lyme, but I think we need to remember this happens in other areas of medicine too. I understand from a traditional medical point of view that Chronic Lyme is not believed in. I have weighed the pros and cons very, very carefully. I also chose my LLMD VERY carefully.

You are right in saying that they abx can have anti-inflammatory effects. They are now finding, as I am sure you have read, that the antibiotic, Rocefin is effective in treating ALS patients--not b/c of the antibiotic properties but b/c of other properties of that medication.

Still, I don't understand why one pill of minocycline would make me deathly sick with a herxheimer reaction if I didn't have more going on than just some 'inflammation'? I can tolerate such a teeny amount of abx that this seems to indicated something else might be going on. If I were to take the amount of abx needed to treat a sinus infection, I would be hospitalized from the reaction it causes to my ANS. Hence the reason I am still only at 4 doses of minocycline a week.

Also, I have heard the perspective that any person with a multi-system illness that does not respond to all other treatments deserves a three month trial of oral abx such as doxycycline or minocycline (Dr. Sam Donta who studies Gulf War Syndrome, Lyme, etc). I fit the category of being refractory to ALL treatments up to this point and I have given them the 'college try' and I have seen the best docs in the country.

I am willing to take this risk b/c, honestly, I can't bear the thought of living the rest of my life the way I have the last few years. I would rather take this risk. Right now, I am starting to sleep, having less forceful heartbeats, a bit calmer ANS overall (less shakes, sweats, etc), and less neck pain. It's something. Not a lot, but something.

Is it okay to say, at this point, I don't care WHY they are working, I just know they are working?? That is a question for those who disagree with my choice to think about.

Sometimes I think the diagnosis we get depends on what doctor we go to first...do we get a CFS diagnosis b/c we went to an ID doctor or do we get FMS b/c we went to a rheumatologist? Or do we get POTS/NMH or some other ANS dysfunction b/c we went to a cardiologist or electrophysiologist.

I have consistently stated the risks/benefits of Lyme diagnosei and treatment and encourage people to make a very educated decision based on a LOT of ruling out of other diagnosis, etc.

Unfortunately, as you said, we don't have the studies right now. And Lyme is hugely controversial. But, we make a diagnosis of CFS based on clinical diagnosis...and diagnosis of exclusion. It's our best guess sometimes, as with FMS. As with Lyme. I don't know...the testing has a long ways to go, so for now it is like CFS or FMS--a diagnosis based on clinical evaluation and exclusion of other illnesses.

I'm just doing the best I can and making the best choices I know how.

Sophia,

I understand where you are coming from. But, I suppose 'offense' was taken.

I don't know...I haven't logged on much b/c I haven't been well enough. So, I'm a bit out of the loop....

I still appreciate these discussions though b/c I think they are important. I think we need to be aware that we could be duped or misdiagnosed...and a healthy discussion is good so that we can each then make the best choice for us.

I wish that all doctors did no harm and remembered that rule. Sadly, that rule is broken every day in every field of medicine. Doctorguest, keep 'doing no harm'...it is honored and appreciated.

Emily

[Sophia3]

Sorry Emily...did not mean to offend you on a personal level. I was speaking in 'general terms'/

Much like the chiari connection is controversial...I have known MANY to do the surgery "thinking it is affecting their ANS" and it leads to a string of repair or ongoing surgeries...3.6. 15...its SERIOUS SURGERY. Especially the kind where they cut thru the BACK muscles...very painful though thru the front of throat is serious as well...and much thought and homework needs to be done by all.

Personally, my doc does not believe in the whole chronic Lyme debate and he knew in visit one I had something more than CFS with quick poor man TTT.

But I have read and heard MANY things about different antibiotics CAUSING ANS damage, even in pets so am cautious about such meds. I am just very VERY cautious.

At least my TTT is PROOF I have pots and a poor man tilt shows the same.

I have heard NIGHTMARISH stuff about Lyme docs and its just indeed, controversial. There were controversies in the neck surgery deal....so it must be for good reason. I tend to err on the side of caution ...especially for ANY surgery.

Sorry if I hurt your feelings. I just want you to FEEL BETTER!!!!!

[corina]

this is a very touchy subject and it needs to be treated very carefully (i know you didn?t mean to offend anyone sophia)!

and emily, we are all adults, so yes we can have a healthy discussion!

i do undersand where you are at em, and if i were in your place i would definately give it a try. nobody chooses to live life like you (and others) have to, so i can fully understand you. also i wouldn't want to live with the thought: if only i would have tried, my quality of life could possibly have been (much) better. but that is just my opinion.

we are here to respectfully help eachother, which is why i am so glad i found this forum!!!

corina

[doctorguest]

"Is it okay to say, at this point, I don't care WHY they are working, I just know they are working?? That is a question for those who disagree with my choice to think about"

Emily,

It is perfectly OK to continue treatment that seems to be helping regardless of the cause or the mechanism of action. There are plenty of similar situations in other diseases: we don't know why or how, but it works, the risks and benefits are understood, the patient and the doctor are both aware of these, and that's what matters.

In terms of "chronic Lyme", this can occur if Lyme is untreated for a period of time, and typically there is clinical evidence to this, as well as laboratory evidence with blood tests and also Lyme being present in cerebrospinal fluid (CSF). My personal opinion is that if a blood test/CSF test performed at a major academic institution is positive for Lyme, then I'd treat it as "chronic Lyme". Conversely, if it is negative, I will not likely to proceed with antibiotics treatment, although each case should be evaluated on an individual basis, and perhaps, in a case such as yours where all other treatment options were explored and had failed, then I may consider using a low dose of certain oral antibiotics but not for the treatment of Lyme, but rather for a trial of possible improvement due to its anti-inflammatory and neuroprotective properties. There is some evidence in literature that, for example, minocycline - from the same category as doxycycline - may help patients with ALS and other neurodegenerative disorders. In fact, I believe there is a trial in Europe of minocycline for ALS, MSA and other diseases. There have also been some studies showing benefit of erythromycin in patients with fibromyalgia. Thus, when I hear that people with certain types of autonomic dysfunction are improving with the use of antibiotics, I attribute the improvement to these yet unknown properties of antibiotics rather than treatment of "possible" infection which is hard, if not impossible, to prove serologically.

I hope you continue to improve with treatment to the point of complete recovery! You're completely justified in your decision - when all else fails, one is willing to try almost anything in hope of an improvement. It may not be the right decision for someone else, but it is for you, and you have nothing to feel bad about.

[yikespanic]

Just thought I'd add my 2cents. I am one of those who underwent approx one year on abx treatment for lyme. I decided after careful thought and many hours of investigation to the pros and cons. I can say the doctor who treated me was very through in his care. I had monthly blood testing to check for any adverse reactions to my antibiotics and saw him once every month for check up. In the beginning of treatment I experienced horrible herx's. These became a pattern that returned approx every 4 weeks. Then I slowly began to see improvement in some of my symptoms. I was never kept on the same antibiotic for long periods, they were changed as to not risk them not working in the future. Early this year after a couple of good months, and no return of most of the symptoms we are taking a break to see if they are gone for good. The improvement in my POTS has also been a good sign. I may be left with POTS, but I am no where near as bad as I was 2 years ago. According to the CDC my Western Blot was inconclusive, I did not have enough of the possitive bands to be diagnosed as lyme. I did have bands common with lyme. It all has to be someones decission. I am glad I did it, and do not regret it in any way. I would hate to think if I had become worse and possitively had lyme that I didn't at least give it a try.

Kim

[AJVDK]

Hey all,

This is a very hard topic for me as I am sick with chroic lyme. They belive I have had it for 8-10 years. I had postive blood test, and I on IV abx with now. I am the first one to say I am worried about the out come. But at this opint being sick this long I felt I had no choice and am doing what the LLMD belives I should. I have a good LLMD and is well know. ON nice this is they are looking at the POTS/ NCS also when treating.

I think abx treatment needs to be weighed out. And for me my quality of life was gone. They believe the heart problems I have are due to the lymes, I had 2 surgeies, and pacemaker placed, after the pacer was placed I only got sick as they didn't know I had POTS, I had problems with my galbladder, had to have it remove, I am in so much joint pain I can hardly handle it. They found lessions on my brain, and I have one mass, which right now they are just wacthing. I am to they point if this will help, why not. I have nothing to lose. I quality of life is nothing. I have not worked in 17 months, I gave up my dream job, I spend most of time in bed with 2 heating pads on my joints, and I have to use oxygen on they real bad days. I felt it was my last option. If this can improvme my life at all I felt I had nothing to lose.

I know that it should be a person to person chose, and you need to really think about the rick, but for me and my family, I feel it the best chosie. Just my thoughts on the subject!

Talk to you all later