posted
Looking for some help, 9 years sick diagnosed with CFS. Now I have been diagnosed with both lyme, babesia (positive Igenex April 2009) and MS (September 2009) .
Have researched lyme and been on this board for many months. Now have finished my research on MS and have visited on the MS boards.
Is there anyone here that has found anyway to distinguish one from the other.
regards maps
I have no
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
I believe I have Lyme-induced MS. Which means the Lyme disease caused the multiple lesions in my brain. MS is a set of symptoms, not a real disease; the label MS doesn't tell you anything about why your body started attacking itself. It's just easier for neurologists and insurance companies to deal with.
Are you taking any of the shots for MS?
I have chosen to take Copaxone shots for the time being, with the blessing of my LLMD. Seems to me that whatever caused the demylination, I need to stop or slow it down so that I can properly treat the Lyme.
I'm having what I think is my first herx, and all my neuro stuff is really bad right now. Hopefully will let up soon; I don't have any sick leave left at work.
In my case, and it sounds like yours, the Lyme is the same thing as the MS.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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Thank you sooo much, I think now I can go back to the sense of peace I had when I received my positive lyme test. Sounds wierd but after nine years of CFS diagnosis to actually have something to work on was amazing.
I don't know anything about Copaxone so I will have to do some more research.
You guys are amazing and I am so very grateful.
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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I have chosen to take Copaxone shots for the time being, with the blessing of my LLMD. Seems to me that whatever caused the demylination, I need to stop or slow it down so that I can properly treat the Lyme.
Very interesting. Copaxone is Th1->Th2 shifter, which causes reduced inflammatory response .
Clearly when disease is so bad it proceeded to MS stage bacterial load is so significant that inflammatory response is harmfull. If the l-form etiology of chronic disease is correct then it has the effect of shifting immune system from killing l-forms towards a humoral immunity
From what I gather though thing is th2 response cannot kill intracell bacteria, -it will replicate freely. But if you have MS already I guess there is no other choice - Th1 response will start killing myelin sheaths.
Damn I just realized why Rocephin works for neuro symptoms and then people relapse (often quickly). Rocephin is cephalosporin, cephalosporins have immunosupressive effect trough calcineurin inhibition .
Posts: 856 | From MA | Registered: Jul 2009
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posted
Maps - glad to offer up my experience to try and help others. I've been dealing the MS for 12 years, Lyme for not so long.
Coltman - thank you for the info re: Copaxone! That's more than I knew, not being a biochemist, it's helpful to have someone put it into near-English!
It's my understanding that part of the problem with Lyme is the inflammatory response, so if the Copaxone can dampen that down, that sounds like a good thing?
All the literature I've read, and my neurologist tells me that Copaxone doesn't interfere with any other meds. There are supposedly no known drug interactions with it.
Time to go do my shot!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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quote: It's my understanding that part of the problem with Lyme is the inflammatory response, so if the Copaxone can dampen that down, that sounds like a good thing?
See that a piece of the puzzle I cannot solve yet. Th2 is antibodies response - killing the foreign organisms (and particles ) flowing in our systems outside of cells
Th1 is the response of immune system responsible for killing our own infected cells. This is the system which kills viruses, intracellular bacteria and cancerous cells.It kills them by enveloping those cells with macrophages and lysing them ((breaking cell membrane) It is very important system as you can see. And we produce new cells all the time so in place of killed you get healthy ones. -at least that the case without chronic disease
But its a double edged sword. When there is too much inflammation there is arthritis , endocarditis, sarcoidosis,lupus, MS - our own cells are killed by immune system. More and more research points that this is in fact caused by intracellular bacteria infection - immune system tries to do its job, but its too late - infection is too widespread, it kills cells slower than bacteria disseminates.
So you have this deadly circle - immune systems works overtime killing your own cells, but bacteria persists and spread further, then immune system kills more cells and so - progressing MS, RA, etc...
So Th1 response is now bad for you -since it just accelerates tissue destruction (that is reason immunosupressive drugs are so popular in palliating the symptoms -they slow down the process). On the other hand th1 one is the only way immune system can kill intracellular pathogens. You cant hope to completely stop process because you will succumb to infections if you supress immune system too much , but if you stimulate it it will just accelerate self destruction. Damned if you do - damned if you don't.
I didn't find answer to this conundrum so far. Obvious answer is - kill l-forms without immune system (with drugs) . But main problem is that it appears that abx are much less effective against l-form bacteria with their multiple mechanisms of resistance (mutatation, biofilms, resistant forms etc) and there is little research done how to effectively eliminate them. I guess no one wants to open that can of worms just yet
Posts: 856 | From MA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
I don't get it. I've been tested for MS and have no lesions and have normal neuro exams so my dr's say no MS. But they do say yes to lyme.
Many of you are saying they are the same thing. So does this mean that everyone with lyme has MS? And Everyone with MS has lyme? Or is it just "some" lyme patients will develop MS? Now I'm worried again about developing MS.
But if I have understood correctly borrelia left untreated for a long time (years)will create multiple brain lesions.
My biggest breakthrough from all these wonderful posts is that the term MS means only "Many Lesions".
It is not a second illness but the results of untreated lyme (in my case).
I hope someone will let me know if I have not understood correctly
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
But MS is not caused ONLY by lyme, right? I think there are other infections, viruses that they are looking at causing MS.
So in your case, MS was most likely caused by untreated lyme. Will treating the lyme reverse the MS?
According to my tests I've had lyme a long time, but have no lesions. Do you think I'm in the clear of developing lesions since I am now treating before they show up??
posted
Lyme expresses differently in different people.
It often attacks the nervous system, joints and heart (hey that is me !).
It is also the "second" great imitator as syphillis, another spirochite, is the first great imitator.
So it can attack many body parts, a few or many. Many named conditions overlap. And IME if you get a "label" by a doc many other docs will not look further.
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posted
In my (non-medical) opinion, there are probably many factors and infections which contribute to the creation of lesions in your brain (what the ducks call MS). I believe that Lyme is only one of the things that cause it. Try telling that to the MS society, though.
So not everyone with long-term untreated Lyme will develop MS, but I believe it is a possibility since this disease hits everyone differently and at different rates.
MAPS - you understand the point I was trying to make - for you and I, Lyme caused the lesions.
Kareamber - a few people have posted here that treating the Lyme made their lesions go away. But - I've always understood, from the MS Soc. point of view, that lesions come and go.
I prefer to believe that treating the Lyme will at least stop the lesion formation, if not reverse any that are not permanent scar tissue.
I don't know if you're ever "safe" from developing lesions. It's my understanding that you can get them in your spinal column, too.
I wonder if there is a strain of Lyme that has a tendency to cause lesions, long-term. My uncle (grew up in ND, spent years as a telephone lineman), has MS, as do I, and I caught it in MN or possibly ND, too.
I don't know if this helps anyone or not, but it's a topic near and dear to my brain! :)
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
kareamber - I believe there can be many factors to MS other than Lyme. But it does appear that untreated Lyme is one of the reasonable causes for MS.
My wife does not have any lesions at this moment but she exhibits every single symptom in the book for MS. I don't think anyone can gaurantee if she will or will not develop into MS. Her doctor on the other hand is very optimistic about her future not having to deal with MS.
I don't have any success story to tell you yet but I am more and more convinced that do what you can and stay positive and cooperative in your treatment is the best optiion, and probably the only option you have left.
And then hope for the best.
(I know it is not the comfort you are seeking to hear. I am on the same boat about my wife's future).
Posts: 822 | From midwest | Registered: Apr 2009
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quote:Originally posted by kareamber: I don't get it. I've been tested for MS and have no lesions and have normal neuro exams so my dr's say no MS. But they do say yes to lyme.
Many of you are saying they are the same thing. So does this mean that everyone with lyme has MS? And Everyone with MS has lyme? Or is it just "some" lyme patients will develop MS? Now I'm worried again about developing MS.
You lucky you don't have lesions now , because when they do develop that means infections is very widespread in your brain. It is not guaranteed you get it - some people might never get them , because their immune system keeps it in check, but more times passes more chances for bacteria to spread (and more BB there is more immune supression it causes, allowing it to spread more easily)
Also not only lyme causes MS, bacterial infection in general probably do that -could be other ones.It is just BB has incredibly effective immunosupression which allows all other bacteria to proliferate as well .So they work in sinergy to destroy your tissues and disregulate metabolism
Posts: 856 | From MA | Registered: Jul 2009
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