posted
I was dx'd with MS in 1999 but am certain that I was infected with Lyme in 1994, because that is when the journey of odd symptoms that finally lead to a dx of MS and now, this week, to a very positive dx of Lyme, began. So, having been accustomed to educating myself about MS, I am now beginning again, this time, to learn as much as I can about Lyme Diesase. Eventually, it is my hope that my two doctors, the LLMD and my MS specialist, will agree that I never had MS in the fist place! I think I understand enough to know that this may take a long while to prove conclusivly, possibly years or maybe never. I would greatly appreciate hearing from anyone out there who has both. I have been on Avonex injections for the past 6 years and for at least the three months that I'm on the IV Rocephin, which I will start on the 28th, I will most likely be stopping the Avonex along with a couple of the other drugs I've been taking to help with the sympoms of MS (and/or Lyme!), Neurontin for burning pain and Amantadine, for fatigue. Any thoughts from you on using those drugs concurrently are most appreciated. I don't want to do anything that will cause undue liver toxicity, but the relief they provide from fatigue and neurogenerated pain would sure be a big help. And what about sinus headache relief? Is Advil sinus medication ok while on Rocephin? I understand that sinus headaches are part of Lyme's lovely symptoms.
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Posts: 3 | From Pennsylvania | Registered: Feb 2009
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posted
Hi MaryAnne - I am sorry you are dealing with these health issues.
I was never diagnosed with MS although I can tell you that the myriad of physicians I saw that were uneducated about Lyme were suspecting MS.
I cannot help you with your inquiry but just wanted to let you know how glad I am that you are pursuing the lyme dianosis actively.
It blows my mind how physicians are so quick to diagnose people with MS when they still don't know what the heck causes it but they hardly consider lyme which has a known cause.
Good luck with your journey and do not give up if you treat with just one antibiotic and you do not have a herx reaction or improvement - It takes a lot of trial and error to find the antibiotic that kills the particular strains of tick borne illness you might possibly be fighting.
------------------ "If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Thank you so much for your reply! It means a lot to me to know that you guys are all out there encouraging and educating and helping those of us who are new to this disease. I have a very supportive MS specialist who took the time to call me last night to assure me that he will look carefully into my new Lyme dx and how best to treat it, as well as reevaluating my care and dx of MS. Unfortunately, out here in California, many doctors just don't believe we have Lyme disease and don't know a whole lot about the symptoms other than the classic signs. I was tested two or three times for Lyme while I was being evaluated for MS between 1994 and 1999. The blood work was always sent to regular labs and came back negative. Doctors didn't then, and maybe still don't, know about specialty labs like IgeneX and others. I would have gone on indefinitely, assuming that Lyme had been sufficiently ruled out, had I not recently met someone who insisted that I check out IgeneX and think about being tested again. Now I feel like going back to see each and every doctor I've seen for the past eleven years, from internists to neurologists to rheumatologists to MS specialists so that I can tell them to get to these websites, at the very least, so that they won't blow off Lyme Disease in this part of the country!
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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posted
I was dx with MS in 1999 and on Avonex for 3 years. The dx was after a decade of sx that no doc was able to figure out. As well as positive MRIs.
IMO Avonex is the worst kind of treatment if you have Lyme because it supresses the immune system, allowing the bacteria free rein. I had already kicked the habit prior to Lyme dx, because I hated how it made me feel (depressed and ill).
After reading an article on Lyme being mis-dx as MS a year ago, I got the right Lyme tests and subsequently was dx with Lyme. Turns out that the sx are virtually indistinguishable between the 2, and the MRIs are the same as well.
My personal opinion is that MS and many other diseases are really just bacterial infections that present themselves differently in different people. Only time will tell.
I was rx Neurontin by my Lyme doc and it has helped me stay asleep tremendously. After 5 months of no progress with multiple, high dose oral abx the LLMD wanted me to do IV Rocephin but I refused. Many people feel better on it, but relapse as soon as they stop.
Instead I began Marshall Protocol (www.marshallprotocol.com). I am not yet feeling any better, but the herx on small doses of abx with MP are much more substantial than the herxes on hi dose abx rx by the LLMD.
I doubt you will ever get anyone to undo your MS dx, the docs don't seem to willing to question each other's dx. All the docs I saw, and there were many, just rubber-stamped the original dx of MS without showing any inclination to question it.
posted
Thank you for your reply! I started the iv Rocephin yesterday and skipped this week's Avonex injection. However, I'll go back on Avonex next week. Both the pharmacist who filled the Rocephin order and my neuro are in agreement that the two drugs are compatible. One targets inflammation caused by a very specific T cell (Avonex) and the other, infection (Rocephin.) The main thing will be to monitor liver function very closely (once a week.) I offered to switch to Copaxone for MS but my neuro feels that Copaxone takes a good 6 months to fully kick in and by then I'll be off of Rocephin. He went over my MRI film with me today and showed me all the lesions and said that it really is impossible to distinguish between Lyme lesions and MS lesions. Only a brain biopsy could do that. He also had a return call from the prominent MS/Lyme specialist he knows in NY and was told to pretty much disregard the IgeneX lab results, BUT that the antibiotic protocol for Lyme certainly can't hurt. It may be years before we know for sure whether this is Lyme + MS, just MS or just Lyme. I feel that he is being more than fair about this whole thing at this point in time.
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Hi Maryanne, So sorry you have to be going thru this. It is very very hard to distinguish between lyme and ms. In the part of NYS where I live, doctors are extremely lyme illiterate. The vets, on the other hand, are doing a great job diagnosing and treating lyme in the fur residents of this county! Sad but true.
I would love to do some statistics in this area, but it appears to me that there is an overdiagnosis of ms - I can't tell you how many people I know that are being diagnosed! I just talked with another young woman this past weekend that is being told she has ms. When she told me her symptoms they also sound a lot like lyme!
Maybe I've just become more aware of certain illnesses since I have become sick, but why are there so many cases of ms around here and so few of lyme? I certainly know why, but the docs aren't going to change their medical opinions because it could reflect poorly on what they have done in the past - they're stuck in the cycle of misdiagnosing if they don't want to be sued....
I don't believe every illness is lyme and I do think there are people that really do have ms. But then again, what is ms? A bacterial infection? A genetic glitch? I think you are being very smart looking into all options and working with a llmd. cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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posted
I saw my LLMD today and relayed the negative info about IgeneX that my neurologist heard yesterday from the MS specialist in NY who sees a lot of both. He was amazed, and told me that IgeneX is a very well respected lab, one that has had to meet extremely stringent standards, far beyond those for ordinary labs, in order to get licensure. Furthermore, it is very close to getting licensure in the state of NY. To try to answer the other question about why so many people are being dx'd with MS these days, I think there are at least two contributing factors involved: the first is that MRI's are much more available and their magnetic fields and resolution much better than they used to be. This has extended the age range in which people are commonly dx'd with MS both downward and upward. The second reason is that starting in 1993 there has been a growing number of treatments available...Avonex, Betaseron, Copaxone, Rebif and Novantrone (and hopefully again before long, Tysabri) that slow the progression of MS. Having an arsenol of treatments available has made some doctors more willing to confer the dx of MS on a person than was common back when it was believed there was nothing to be done for MS, even though none is a cure. To the best of my knowledge, MS is still a "rule out" dx, though, and is thought to be caused by an environmental trigger in genetically susceptible people. Specific genomes for susceptiblitiy have been identified, but what role they play, individually or in concert with one another is yet unknown. Why couldn't we all have something simple to dx, treat and cure, like tonsillitis! How come we had to get stuck in this vast grey limbo?!!
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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Welcome to Lymenet - sorry you have to be here - but wise on your part to learn all you can.
First, allow me to introduce myself as possibly one of the biggest idiots here. I'm still learning - only dxed with LD in Nov. 04. Also know that I'm highly sarcastic and often offensive. Somehow people have managed to deal with me...overall.
Second, prior to my dx with LD - I had been considered numerous times as a "candidate" for MS (as if it were a special elected office of sorts.)
Prior to LD dx, MS was ruled out several times, much to my relief.
NOW that I actually have the LD dx, and I'm finally seeing a LLMD - who just happens to be a neuro - I'm hearing/reading (forget which one) that it is possible that Lyme can be a causitive factor for MS (or MS symptoms.) Please keep in mind that "idiot" warning I gave you above.
I'm now in the process of waiting to get yet another MRI - because you can just never expose yourself to too much radiation, you know?
I know my post here probably isn't helping you...but...well, I just forgot what other brilliant thing I was going to say....wait for it... ...processing.... Oh yeah, it is possible you've had Lyme for quite awhile (undiagnosed) and that it is the causitive factor of the MS or at least the symptoms. SEE! I knew I was going somewhere with that!
If I find out where I read about Lyme being a causitive factor for MS - I'll write you back.
Don't sit by the computer waiting for my response, because honey, I'll probably forget about it in the next 10 minutes.
Take no offense. Lyme brain.
Good luck with your searching. You've found a great place for info & support.
Blessings,
------------------ DR. Wiseass - not a real doc - just a real wise ass. www.twistoflyme.blogspot.com
posted
Dr Wiseass (Love the name!) I have thought the same thing, that Lyme could be a trigger for MS. I don't think it is the trigger for ALL MS, but for me, it is very possible that it could have been. Sadly, it is quite possible that I may have both diseases and that Lyme might be curable and the MS would merely improve somewhat. Don't know. For other genetically predisposed people, other viruses, bacteria or environmental agents might be the triggers. Good luck with the MRI...I've totally lost track of how many I've had by now!
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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