I am wondering what peoples opinions are concerning Lyme disease and other diseases like MS, ALS and others.
I understand that Lyme can imitate other diseases but that does not mean they turn into other diseases or are other diseases. I personally think there is a difference between ALS, MS others and Lyme. I have two friends with MS that are clearly MS and not Lyme.
I have been diagnosed, clinically, by Dr. M with Lyme disease which presents itself just like MS. I have had all tests done with clear results for MS. Two neuroligists and plenty others have said I do not have MS.
I guess i am just wondering what everyone elses experiences are and what they think about all this.
Lesley
Posted by hopeandme (Member # 8803) on :
Great post Leslie!!!
I know from experience that people are diagnosed with CFS instead of Lyme because there are no varying symptoms. Many people who got to Lyme doctors are dx as having Lyme and people who go to internists or rhuemys give them the dx of CFS.
I do think that there are differencies like you in MS and ALS.
Unfortunately, none that I know of with CFS and Lyme. I have posed the questions many times even to doctors and they can not tell me one symptom that would make a clearr dx whether it was Lyme or CFS. Oh yes, one of them did say a Lyme test, but we know those aren't reliable.
Thanks again for posing such a great question! Hope
Posted by Lesley (Member # 8678) on :
Hey hopeandme,
so do you think ALS, MS and Lyme are all the same disease?
Posted by timaca (Member # 6911) on :
No they are not the same disease. Dr. F addresses this issue at www.columbia-lyme.org. Look in the "ask the doctor" section.
Timaca
Posted by Lesley (Member # 8678) on :
I agree...i have always thought they were all different diseases....i think it is important for people to realize that lyme can imitate other diseases but testing can help tell the difference.
Posted by SAK (Member # 7387) on :
Great topic Lesley!
I was told I have MS for 20 years because my MRI finally showed lesions (multiple sclerosis points in the brain).
All of my symptoms are Lyme but these are also MS symptoms. So the name MS is just the name of a symptom which is a Lyme symptom too.
What symptoms do your friends have?
When I figured out it was Lyme misdiagnosed as MS for me, it all made sense.
The friends I know that have an MS dx really have Lyme too.
So, it sounds to me like it is possible for MS to be a common misdiagnosis.
I don't know anything about ALS. Sorry.
Posted by Aniek (Member # 5374) on :
My personal opinion is that diseases like MS, ALS and Lupus have a variety of different causes and that Lyme is one of those causes.
I believe that if research concentrated on looking at these disorders together we would discover that the same trigger can cause different reactions in different people.
The reason I believe this is because of all the different disorders that Lyme imitates. Is Lyme imitating these disorders or causing them? I think Lyme can cause them.
I don't think everybody who has any of these disorders has Lyme. I think there are other bacterias, viruses and environmental triggers that cause these disorders to arise.
Posted by Bothrops (Member # 7393) on :
Lesley, I have been asking that question for 3 years. I think what another poster said was right on, you see a rhumy and you will have cfs/fibro. The same holds true for the llmd, they will say you have lyme. As long as testing is as bad as it is, I guess, there will be a loophole that not so honest people can say you have something that you may not have.
As far as CFIDS/FM not being legit, I use to believe that but they seem to be getting a lot further in the science area of cfids than chronic lyme. It really bugs me that the only people researching chronic lyme are a few llmd's. How in the world could you get an honest study from someone making there living off that disease.
If this parainfluenza deal pans out than MS and CFIDS may have a reliable blood test soon. Then misd'xing ms and cfids for chronic lyme, or vise versa, will be a thing of the past. You would think with lyme being second to aids, they would be busting there butts trying to get a reliable test and a cure. A cure for a bacteria should be much, much more easier than for a virus.
Too many loopholes, too much dishonesty!!
Posted by Lymetoo (Member # 743) on :
They MIGHT be different diseases but the DUCKS are NOT good at differentiating between them....thus MANY are misdiagnosed!!!
Couple that with lousy tests by Quest and LabCorp and you have a lot of people with incorrect diagnoses!
I was misdiagnosed with Fibromyalgia for 20 yrs before being properly diagnosed. I don't think I was ever tested for Lyme until Aug 2000.
No rash, and no red swollen knees. That's what drs look for!
Posted by Aniek (Member # 5374) on :
quote:Originally posted by Lymetoo: No rash, and no red swollen knees. That's what drs look for!
I had the rash and a swollen knee for years. Still took 17 years to get diagnosed.
Fibro is a syndrome, which means that it is just a name for a group of symptoms with no known cause. So it's not really a disease.
Posted by bettyg (Member # 6147) on :
In Treepatrol's NEWBIE links, he had a lot of ART DOUGHERTY's extensive research links comparing lyme with many of the 300 other illnesses lyme mimics.
Go there and find this info; it may have ALL been taken down! Not sure; 1 illness I was looking for was. If the links are NO good; please send a reply to TREEPATROL on his newbie links so he can delete all Art's links. They were wonderful; very detailed.
Posted by karatelady (Member # 7854) on :
I believe I've had lyme since I was a kid living in Florida (oops, forgot, Florida doesn't have lyme and Georgia doesn't either ).
Misdiagnosed with everything from IBS, heart irregularities, sinusitis, allergies (all those were true but not the underlying cause), 10 miscarriages, and then finally CFS/FM.
Sheesh!
Sandy
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by Lymetoo: They MIGHT be different diseases but the DUCKS are NOT good at differentiating between them....thus MANY are misdiagnosed!!!
Couple that with lousy tests by Quest and LabCorp and you have a lot of people with incorrect diagnoses!
I agree with Tutu.
Sometimes they are different diseases.
Sometimes, they are just lyme disease. Thanks to idiots at Quest and LabCorp, most patients will never know. Also, most neuro's boast that they have already "ruled out" lyme in their MS patients by giving them the worthless ELISA. Yippee. I feel so reassured now.
It takes a serious investigation to rule out lyme.
Doctors who are not educated about lyme disease are NEVER going to know enough to even know how to go about this, or even be inclined to do it.
I speak from personal experience. I have multiple brain lesions, abnormal evoked potentials, and an MS dx from my neurologist. However, because I knew I'd had a tick bite with a rash a couple years earlier, I refused to just accept it without further investigation. My neurologist duck claimed the rash was "probably just an allergic reaction to the tick bite." (Yep, because my ELISA was negative.)
My symptoms were more Lyme than MS (in my opinion, anyway).
Headaches COULD be, but rarely are, the presenting symptom in MS.
I got hold of an IGeneX test kit and tested shriekin' CDC positive. Later to also test positive for Babesia WA1.
It is sad to say but with Lyme disease, you really need to be your own doctor -- at least until you find a good LLMD. Read, read, read, and do not blindly trust!
Michelle
Posted by Lesley (Member # 8678) on :
So Michelle are you getting better? Are you being treated for Lyme?
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by Lesley: So Michelle are you getting better? Are you being treated for Lyme?
Treating for lyme - one year; treatment added for babesia WA-1 the past six weeks.
Improvement with lyme treatment: Slow and steady but with stall-outs and backslides.
Improvement with babesia treatment: Priceless!
Michelle
Posted by Thereminator (Member # 8324) on :
When I thought I had Fibro I belonged to a forum-group that had members testing positve for Lyme at a surprising rate! I would NOT dismiss the idea that FM-CFS-Gulf War are related to Lyme. Alan
![[confused]](graemlins/confused.gif)
Sorry.
![[bonk]](graemlins/bonk.gif)
).