MS versus Lyme Disease

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Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 8/23/2006 5:47 PM (GMT -6)   
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

alfers
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Date Joined May 2005
Total Posts : 2671
   Posted 8/23/2006 6:22 PM (GMT -6)   
I just wanted to add that Dr. Jernigan is a well-reputed lyme doctor. Another doctor that many of us see also believes lyme causes things such as MS, ALS, and Lupus -- that it propels the body into autoimmune disorders. This is up for debate, of course, but Denise has provided one useful school of thought. For more information on lyme, two helpful sites are www.lymefoundation.org and www.ilads.org (International Lyme and Associated Diseases Society).

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/23/2006 6:23 PM (GMT -6)   
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.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 8/23/2006 6:58 PM (GMT -6)   
Hi Uppity again,
 
Yes, that is exactly what Dr. Jernigan is saying as far as doctors being taught that Lyme Disease is only in Connecticut.  
 
Uppity, Lyme is a neurological disease and if you did your research you would already know that.
 
I don't know why are you being so defensive.  I am only trying to help as I don't like to see anyone suffer from any disease.
 
Did you ever ask yourself what causes MS?  Did you ever find any scientific facts to back that disease up?  You won't because there just aren't any.  Just as there are no scientific facts to back up FM, Lupus, CFS, etc.   All of those so-called diseases including MS are symptoms of an underlying bacteria(s) that is real and tangible.
 
I honestly feel sorry for people that "buy into" the diagnosis of MS and just keep on suffering and are in pain. 
 
I can not tell you how many people I have come across in the past 11 years who were also diagnosed with MS and found out later on they had Lyme Disease.
 
If you choose to close your mind to it, that's your choice, I wish you the very best of health.   
 
Good luck to you,
Denise
 
 

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 8/23/2006 7:45 PM (GMT -6)   

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

 


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 8/23/2006 8:20 PM (GMT -6)   
Christine,
We're just trying to help those who present with atypical symptoms. I only respond to people when I notice that people on this forum say "That doesn't sound like MS" and don't know what else it could be. Lyme is underdiagnosed and many people suffer years without anyone ever suggesting lyme. We're just trying to help.

lhcook
Veteran Member


Date Joined Nov 2005
Total Posts : 840
   Posted 8/23/2006 8:37 PM (GMT -6)   
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

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 8/23/2006 9:11 PM (GMT -6)   
Hi folks,

I totally understand the reason behind promoting Lyme awareness, but please keep in mind that this is a forum for MS and we do have people come here to learn more about it or those that do have it share their information and experiences with each other here. Please keep that in mind when posting. You are more than welcome to invite those interested to participate on the Lyme board, but debating the issue between MS and Lyme is counterproductive to those who do in fact have MS, live with it everyday, and come here to talk about it.
 
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Counting My Blessings
Regular Member


Date Joined Apr 2006
Total Posts : 53
   Posted 8/24/2006 5:14 PM (GMT -6)   

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!


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/24/2006 7:23 PM (GMT -6)   
Hi Violets,

Thank you for responding and I totally agree with what you are saying. Healing Well is a support forum where people come to hopefully get information or share experiences with others. What I'm seeing is a lot of controversial debates and forceful opinions which really don't fit into that category. My apologies if my post read that I was trying to create borders, it was a reminder to those who insist on debating that it is very counterproductive and not of a supportive nature.

I'm so glad that you figured out what was causing your problems and are doing better. It can be a very difficult time to be in limbo and not know what is causing all the symptoms, and it can be a wonderful feeling to know that you may have helped someone else. Supportive posts really do make a world of difference.

Kimber
 
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