Questioning MS diagnosis?

Hi All,

I just posted on the lyme forum as well.  After all this controversy about MS or Lyme I'm really confused.  Should I question my MS diagnosis?  I am just getting to the point of acceptance and now I'm feeling weird about it.  I'd appreciate any advice you all have, I'm just not sure that I should even have to worry about this.  My hubby says for me to not even think about it.

Here is one credible site that talks about what Lyme Disease is: 

http://www.aldf.com/lyme.shtml

See if any of your symptoms or experience matches, then decide if you need to question your diagnosis.  Good luck.

Ok, I was trying not to get in on this debate, but I have to say that a lot of the information on the American Lyme Disease Federation's website is flat wrong. Maybe a few people have been cured by those methods; maybe many doctors believe the information posted there. But I can tell you that my PCP used that protocol for treatment, and here I am 5 years later with a terrible case of late-stage lyme. Actually, now I'm mostly better because my lyme doc did NOT follow that protocol but used more aggressive treatment. I also had ehrlichiosis and babesiosis -- tested positive for them, had all the symptoms (um, many of which were not listed there) -- which the ALDF website indicates would be nearly impossible for me to have. Some lyme researchers have actually surmised that up to 80 percent of people with lyme are co-infected with babesiosis, and research shows it to be at least 40 percent. I won't even debate the rest of the info on that site right now; just wanted to point out a few glaring mistakes. Uppitycats, I don't know why you seem to dispute the information on lyme that hundreds or thousands of people on lyme boards all over the world are sharing. Shellypoo, it's up to you, but if you think you have could have lyme, you should follow the advice of the thousands of lymies who are now getting better -- and who actually became sick as a direct result of the kind of information the ALDF is propogating.

OK all, I'm closing this thread on Lyme, I didn't mean to get a debate started.  This is the stuff that has gotten me all confused and I don't want others to be so confused, either.

 

I really don't think I have lyme but I will mull it over some more.

Hi all,

I really don't think this thread should have become a "debate".  In my eyes, the bottom line is trying to help each other get better and support each other no matter what forum one posts on.

I don't feel it's about trying to be right or wrong or "bashing" anyone.  To me, these forums are about giving accurate information and support.  Yes, I supplied a link that had information that I thought was helpful, I wish someone had given me information when I was searching for answers.

I became so sick that I lost the use of my legs and I still didnt have a diagnosis.  I think if a doctor would have told me I had MS, I probably would have believed the doctor because I was so desperate for a diagnosis, or a label that fit my symptoms as I went doctor hopping for a duration of 5 long years.   Believe me, I did lots of research for myself on MS as I thought I really had that as I never thought I had Lyme at that time.  I never saw the tick that bit me or felt a bite. 

I guess what I am trying to say is that I don't think people should take any of these posts personal, but to keep an open-mind and support each other. 

Shellypoo, once again, I admire you for questioning your diagnosis, why not rule out Lyme?  I apologize to you for anyone here that has caused you stress. 

I am not bashing anyone here, just trying to help.  Is that so wrong?

Denise

Shar,

Yes, Lyme can cause lesions, constipation and bladder problems.  But of course so can many other things!  I didn't have much joint pain.  The confusing thing about Lyme and MS, lupus, ALS, CFS (and the list goes on) is that everyone is affected differently.  I feel like I'm in an episode of the Twilight Zone sometimes.    Anyone else think that too?!

Best wishes,

Alexia

 

  Shar...I agree with Denise. My brother-in-law from Vancouver had a severe case of lymes and was very sick with it. Also, debate can be a good thing if one is not doing it to be a star just because they feel they are right. Eveyone one has to be their own advocate but if we can give each other food for thought then we can go forward and hopefully find our own truth about what is right or wrong for each of us but hopefully with the support of all!!!  Dale

Karen, well said. 

Michelle this is exactly what I worried would happen.  People with firm dx's of MS will start to question their Dr's because of the fanaticism that seems to be surrounding this board when it comes to Lyme.  When the Lymies make comments such as "I can't believe people BUY INTO THE MS DX's" it makes my blood boil. 

As long as i've seen you post I've never seen any indication that you were seeing some quack that's lead you to believe in a false dx's.  To the contrary, you've always seemed to trust in what your Dr has done and been through the exhaustive amount of testing that we all have had before getting our dx's. 

MS and Lyme have SOME symptoms that they share but not all.  But so many other illnesses and syndromes do too and they too are ruled out before an MS dx's. 

And as far as the statements made by the members of the Lyme board that they are only trying to help someone in need, that's nonsense.  When 4 or 5 come over from that board and create controversy, this is obviously NOT HELPING those in need. 

Rest your little heads at night Lyme board members, that we have your back and we will refer people to your board that are in limbo and may need some help regarding a possible dx's of Lyme. 

By the way, I went on the Lyme board the other day to see just what it is that Lymies are so upset with the MS board about and what I read was not good. 

One of the posts screamed out for all Lymies to respond to a possible ms'er that had all the "Classic Lyme symptoms".  Give me a break.  One Lyme member is enough.  We don't need 4 or 5. 

Mods - Isn't there something that you can do to stop this craziness cause obviously asking them politely to limit their controversial behavior isn't working.  

DBG,

thanks....it is a very interesting controversy that has seem to become an epidemic.  i've been posting on the lyme board and lurking about.  there are alot of knowledgeable people around.  as there is alot of "coercing" to join the brigade.  i have been undergoing more tests than i ever thought possible.  i have no diagnosis.  i have a lot of symptoms, that mimic alot of diseases.  i do know from my neuro that i don't have "alot" of things.  and i trust her.  i'm very glad, i did say to myself if ms was the worst i had, so be it, there's alot of progress and alot of people living very high quality lives with todays treatments.  so far i don't have ms either.  mri of head and neck clear.  they'll do tspine and lumbar if symptoms persist but she doesn't think so.  nor do i. 

i felt the need to jump in because i see "alot" of people being encouraged to pursue lyme.  i don't think it's healthy for people to jump in on boards and suggest people pursue other diagnoses when they don't fit the bill.  their are some very impressionable people in cyperspace.  their are also some very young adults, which fit the age group of ms, that are afraid and may not be ready to come to terms with a diagnosis.  understandable, very understandable.  i don't know what the ulterior gain would be, but i have recently become very suspicious of llmd and IGENEX.  i do understand some people have chronic lyme and some people need to puruse a doctor familiar with lyme but not everyone has lyme.....actually alot of people do not.......

 i see alot of young women posting with "ms" symptoms and it frightens me to think they won't take advantage of today's medical advances.  currently i'm taking a 30 day supply of doxy for lyme.  yeah i tested negative but had tick, rash, symptoms, live in mass.....recent bite two months max....but do i have lyme? don't know.  maybe.  do i have maybe knee problems, back problems, thyroid problems, bad diet all masking as lyme.............PROBABLY.....

it's not only here that certain conditions are seeking recruits.........and i know lyme has become a big issue, depending of course where you live......but to be honest it's almost become cultish, everywhere you look, if you have parathesis, weakness, vertigo...etc, someone is popping up saying LYME....seek llmdl, antibiotics for a year, etc.....

good luck and shellie poo - your with a group of people who can really guide you traditionally

karen

hello all-

My 2 cents - we all realize that none of us are doctors, but when your health starts to take a turn for the worse and there is no definite diagnosis, it is good to have somewhere to turn for information. I think we are all intelligent people, and can take each other's opinions into consideration. I don't think any one of us is so impressionable that we would just throw a diagnosis we believe to be true out the window b/c of a few opinions. 

I know when I didn't know I had Lyme and all tests were "normal", it was the worst time of my life. I appreciated any input anyone had as to what could be going on with me. I talked to as many people as possible, and when I went down the Lyme path, I ended up with positive test results, and am on the road to recovery. I think it's very important to point out options to someone who is questioning their diagnosis or is not responding to treatment to either confirm the path they are on or realize they are on the wrong path.

We aren't doctors, but it is our bodies, so we don't have to sit back and take any doctor's opinion on a diagnosis if it is not clearcut or is atypical. I saw some of the "best" doctors in the area, and they were wrong. It is a PRACTICE of medicine. I work with doctors every single day, and they are human. I get passionate about Lyme, because I see people suffering who it could be a possibility for, and Lyme is highly unrecognized where I live. It's just another thing to throw into the equation.

That's all. :)