MS versus Lyme Disease

Hi all,

As a person who had Lyme Disease and one of it's coinfections, Ehrlichiosis, for over 10 years and is now better, I truly feel for people who believe they are suffering from the diagnosis of MS.

I don't know if MS sufferers have sent their blood to the most accurate lab in the U.S. called IgeneX Labs in Palo Alto, CA to rule out Lyme.  Any other lab is not accurate as I had my blood tested by these "run of the mill" labs for over 5 years all with negative results and was told I had CFS which I didn't buy because it was a "symptom" not a "disease". 

Below I am quoting Dr. Jernigan who writes about MS and Lyme:

"Many cases of Multiple Sclerosis and ALS are misdiagnosed and are actually what some call “Neuro-borreliosis.”

 

Recent research by Dr. Lida Mattman, Ph.D., et al., which is due to be published soon, has identified another strain of Borrelia spirochete to be found in every case of MS and a different strain as well in cases of ALS. This would explain the improvement often seen in treating these illness as “Lyme” disease. Both of these newly found strains react on blood testing to Lyme Borrelia antibody, which is why so many of these cases are called Lyme disease.

They are in fact different species of Borrelia. The good thing is that these newly discovered strains will often respond to the same treatments as for the classic Borrelia burgdorferi of Lyme disease. 

Improvement upon correct treatment also confirms the diagnosis. Compare this to typical MS treatments, which only work to slow down the progression of the illness. By the way, those of you with MS, ask any doctor what causes MS – good luck getting a straight answer. Why not a Borrelia type of cause?

Patients must understand that every doctor can only go as far as they have been taught. If they are taught that Lyme is only in Connecticut and the surrounding states, then they will not even consider Lyme or look for it.

The nice thing about the correct diagnosis of Lyme disease is that it is treatable, with a hope of permanent recovery.

 

I have seen and heard so many people who have taken their positive Lyme lab tests to their M.D. who even in the absence of any other positive lab work identifying anything definitive would say, “I don’t know what you’ve got, but it’s not Lyme disease.”

 

I don’t get this! It seems that some doctors would rather diagnose people with what I call a “non-diagnosis” such as unilateral cephalgia, Fibromyalgia, or Chronic Fatigue Syndrome, or atypical this or that.

 

People, these are not a diagnosis!

 

All the doctor is doing is turning what you told him into Latin or simply describing your symptoms.

 

A good diagnosis should name the cause of the symptom. These other “non-diagnoses” are just fine if all you plan on doing is providing unending symptomatic relief. Unilateral cephalgia in the example above is really nothing more than “pain on one side of your head”.

 

With this diagnosis the doctor can do no more than prescribe pain killers.

Opponents of the diagnosis of Lyme disease, and there are many for some political or other bizarre reason that oppose the diagnosis of Lyme disease (even with positive lab tests) outside of New England, are afraid that one may arrive at the incorrect diagnosis of Lyme disease, mainly because the exact cause of the supposed autoimmune diseases is not known in most cases and they seem to be afraid that the patients would be not receiving their symptomatic treatments to slow the illness.

I am not saying to treat every autoimmune disease as if it were Lyme.   However in the absence of any labs identifying the cause of your condition and if you get a positive blood or urine test for Lyme disease and improve upon correct treatment, I say it confirms the diagnosis of Lyme and that is far better than most treatments for these autoimmune diseases, which seek only to slow down the progression of the disease. What Is Lyme Disease?"

I hope this opens up some eyes,

Denise

My husband and I -- who live in Wisconsin -- have a rural local doctor who is quite able to diagnose Lyme...she did in him. To suggest that doctors are only taught that Lyme Disease is only in Connecticut is flat wrong. And unfair to good doctors who DO recognize the differences between Lyme and MS, who DO know that the first test for Lyme often comes back with incorrect results, who CAN distinguish between bacterial infections (which Lyme is) and neurological disorders such as MS.

I'm really fed up with the Lyme fanatics who can't seem to give credit where credit is due. Many of us with MS do INDEED have MS -- and to tell folks seeking a diagnosis to go off on wild goose chases does no one any good. There are *distinct differences between Lyme and MS* and a competent doctor pursuing the diagnosis WILL INDEED DISCOVER those differences pretty early on. I'm sorry so many folks with Lymes apparently are dealing with incompetent doctors.

You know Uppity, I completely agree.  Lately this board seems like it's turned into the Lyme board instead.  It's getting daunting to know that each newbie to the MS board will have a response or two from someone on the Lyme board crying out "It's Lyme!  It's Lyme!"

MS'ers don't infiltrate the Lyme board the way the Lymies seem to want to do to this board. 

Christine

Those of us with Lyme that may come here and give information are only trying to use the information we have to help others. I have Lyme disease and for 5 years I was told I most likely had MS and to just wait as my body fell apart. They said to keep coming back for a brain scan every 6 months because they were sure that soon it would show that I had MS. As I waited I got sicker and sicker and ended up on more and more medications for more and more symptoms. It took my seeking out information on my own, getting my own test kit for a Lyme test at Igenex, flying out of state to a LLMD, and paying out of pocket.

It worked, I did have Lyme disease and not MS. I am no longer getting sicker, I am getting better. I know that won't be the same for everyone but I know that when the doctors were at a loss for what was going on with me I came to boards such as this trying to see if I could figure out if I did have MS (or Fibro, Lupus, RA, or any of the other things they said I might have).

I wish that someone would have mentioned Lyme 5 years ago and saved me all those years of worry and pain. We know not all cases of MS or possible MS are Lyme do you think some of them might be?

Lucy

I think we truly do all mean well here.  I understand both sides of the issue.  I am not a "lyme fanatic" nor would I ever discourage a person from ruling out a different diagnosis.  Let's be honest here, the treatments that we all deal with, injections etc, are no picnic so wouldn't it be a shame if a person diagnosed with MS went through all of that for years only to have a different illness that could have been cured?  I just think that it doesn't hurt to check things out and I think that is all that was being promoted - just information.

As for doctors being able to test for Lyme, it isn't an insult to the physician to say that the diagnosis may not be accurate, but just a statment in the varying processes that labs have for testing for the disease, some are more thorough than others.  For example, my nephew was diagnosed with Lyme at one clinic in MN and they sent the test to Mayo Clinic who came back saying that he definately didn't have Lyme and it was most likely another autoimmune disease.  Well, after alot of "battles of wills", my sister and her husband got their little guy in to see a physician that would send the test to IGENIX (it's hard to find a physician who will do that after Mayo has said that it wasn't Lyme).  It turned out that he had four different Lyme agents in his system.  He has now been treated and is doing great.

Again, I'm not a "lyme fanatic", just a person diagnosed with MS that is suffering a great deal with injections, side effects from injections, and now subsequent depression from the interferon so I actually would be thrilled to hear that I have Lyme instead so if that is at all a question in someones mind, I don't think it should ever be discouraged to seek further testing.

Just my 2 cents - for what it's worth!