It seems lyme and ms are so similar, how do you tell them apart? one is infectious and the other autoimmune leading to the same or similar outcome???
Does MS cause joint pain?
Posted by feelfit (Member # 12770) on :
MS should cause some tell tale autoimmune markers to be present....though Lyme can go autoimmune too.
I guess I would rather treat with something that could cure instead of a band-aid. I would take the abx. Lyme, MS, doesn't matter.
Feelfit
Posted by sutherngrl (Member # 16270) on :
I agree. I would treat for Lyme and see what happens. MS is an illness of unknown origin. In my opinion there has to be a cause.
Posted by MY3BOYS (Member # 17830) on :
ms is auto immune in nature. is post effect of somekind of infection. science does not know the underlying trigger - similar to lupus, sarcod, als, etc
most are a body response that occurs after infective assult of some kind
Posted by Keebler (Member # 12673) on :
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I hope you can consult with an ILADS-educated or ILADS-member LLMD. You need someone expert in lyme (and all tick-borne infections) to see you in person, to go over your history and do a clinical evaluation.
I cannot emphasize enough the importance of this.
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[ 03-12-2009, 04:19 PM: Message edited by: Keebler ]
Posted by MariaA (Member # 9128) on :
There are a bunch of posts about MS and Lyme in the LymeMD blog- go to the May and June entries, not the more current ones:
MariaA, I looked at that blog but could not find what you said to look for!
Keebler, it's so difficult to keep conviction on this thing given that I have already treated with abx/mepron, etc. for about two years and YES it was very effective in getting my sanity back and it took at least two years to get that far. But now....I honestly do not know what to believe about neuroborrelia etc. I do think it is possible that I have a post infectious condition. I haven't seen my LLMD in awhile due to financial issues but my neurologist is still covered and while he is not an LLMD he is relatively educated in CNS lyme and he thinks I have something going on more than the lyme. I almost want to believe him because it would be so much easier to have something that is accepted in mainstream.
MY3BOYS, thanks for reminding me that indeed, MS can be triggered by infectious process so it is not entirely out of the question.
Feelfii and southrngirl....yes,I have done long term antibiotics already and honestly as much as I wanted them to cure me, they did not cure me, even though they brought me back to the land of the living. The hardest thing to decide is when to stop antibiotics. I do think I have an autoimmune thing going on but there is really no way to tell at this point.
Thanks for the feedback.
Posted by dmc (Member # 5102) on :
If you haven't done any IV or the right abx dosage that can cross the BBB you aren't going to "improve" is you have MS type lyme.
I am speaking from the MS lable experience. A non- llneuro doesn't know or treat properly. Get back to a LLMD.
By the way, 2 yrs in treatment is nothing when you have CNS issues.
Posted by Lymetoo (Member # 743) on :
What if there's no such thing as "autoimmune"? Then what causes MS?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by painted turtle:
Does MS cause joint pain? [/QB]
Not to my knowledge.
Posted by painted turtle (Member # 7801) on :
Lymetoo, I do think there is such a thing as autoimmune. Arthritis. Autoimmune hepatitis and all the rest of that stuff.
It's just that, possibly, antibiotics are not a cure all, for me. They definitely put the ketes into cyst form and there's no way I can take flagyl.
I just think too, that being told it's a herx and getting worse is a good sign only flys with me for so long until I'm like, well, when do I get better?????????
Not to say the abx didn't help a lot, because they did.
Maybe I'll go back to LLMD, maybe I'll go back on them. I'm still weighing it out, it just seems abx while helpful, also cause other imbalances. Not to mention that I've totally run out of money.
So if my neurolgist knows that MS does not cause joint pain and I reported joint pain getting worse....then why would he suggest MS? He bases it on my vision troubles and the instability like vertigo stuff, and weakness esp. in legs, plus the cognitive/memory stuff.
Posted by Dekrator48 (Member # 18239) on :
My LLMD says that even autoimmune responses have a cause.
It can be the borrelia bacteria that starts a long cascade of events that leads to what appears to be an autoimmune response.
The following presentation is very good...scroll to frames 48-50 about MS vs Lyme, and read the info. When you have time, I recommend reading through the entire presentation:
I think the type of neuro-lyme you are describing (with white matter lesions) can be terribly difficult to get a treatment handle on. There is no easy cure, it takes years and there are long stretches of time where one might feel very ill. In other words, once lyme gets a hold of your brain (in an MS-like way) it is very hard to get rid of.
I think this is why the whole MS/Lyme nut hasn't been cracked open long ago. If it was easy to treat with great outcomes I'm sure there would be MS patients all over jumping up out of their wheel chairs (not that this doesn't happen). Lyme clearly is treated imperfectly (as often admitted to by our LLMDs) because we don't have a true understanding of the disease.
Of course, your neuro will dx you with MS!......if you have lesions and vertigo, vision issues, weakness you are a walking textbook example of THEIR definition of MS. Once they label you with MS or even suspect it because of your neuro sypmtoms other traditionally non-MS symptoms will be added to your diagnosis.
So if an MSer has joint pain the docs just chalk it up to MS "pain" or if it really persists they can always tack on an additional dx like RA, Fibro, Lupus. Lots of MSers have multiple autoimmune dx's with the rationale that people with one autoimmune disease are more susceptible to other autoimmune diseases.
If you really think you have MS than go with your neuro's assessment, but do realize this will mean administering an immune-modulating drug either daily, every two days, or weekly. This treatment is also very expensive and if one looks carefully and rationally has efficacy no better than placebo.
One thing I might suggest as a middle of the road therapy is to take minocycline. In some studies in Canada it proved to be quite successful in a three year study for relapsing remitting MS. It is inexpensive and side effects are small.
Posted by painted turtle (Member # 7801) on :
Thanks Dekrator, I'll look at that presentation.
Sojourner, great info, thank you for the time it took to post it.
I agree, it is complicated beyond measure, especially if Lyme treatment is not successful, or a hundred percent successful. It's really relative. I'm much better than I was at diagnosis by light years, but now it seems like I'm just broken from it and have a permanent kind of thing.
What I hear you saying is that the MS meds may be exactly like the abx....expensive and not entirely successful.
Funny you mention minocycline because that is what I was taking when I felt the best, I thought the mino was the only abx that made me feel better rather than worse. However, my LLNP was booted out of the state around the time I started that one and then had to find another LLMD who did not want to use mino at all.
I do know one thing...my neuro won't be prescribing it, so I'd need to go back to LLMD for it.
Will take some time to think this through.
So complicated.
Seems for certain I'll never get my life and full health back, but one never knows.
Posted by nenet (Member # 13174) on :
quote:Originally posted by painted turtle: Keebler, it's so difficult to keep conviction on this thing given that I have already treated with abx/mepron, etc. for about two years and YES it was very effective in getting my sanity back and it took at least two years to get that far. But now....I honestly do not know what to believe about neuroborrelia etc.
I do think it is possible that I have a post infectious condition. I haven't seen my LLMD in awhile due to financial issues but my neurologist is still covered and while he is not an LLMD he is relatively educated in CNS lyme and he thinks I have something going on more than the lyme. I almost want to believe him because it would be so much easier to have something that is accepted in mainstream.
painted turtle (I love your screenname by the way), if your antibiotic and mepron therapy had a beneficial effect, and your symptoms or testing were indicative of Lyme, then it is logical to conclude that you have Lyme, and possibly other coinfections. Lyme cannot be cured at this time.
Babesia infection at any time in life rules out any future blood and organ donation. Some things just can't be gotten rid of, only managed by your body so that you don't notice them - for instance, we never can rid ourselves of EBV, but yet we don't all live with Mono symptoms the rest of our lives.
There is no cure, only remission - until they can find a way to get Borrelia killing medicine or other treatment into every tissue and destroy every lifeform of Borrelia, including: cyst (glycoprotein-coated inert or latent form - proven to return to or release infectious spirochete forms when given the proper environment again), intracellular form, bleb, biofilm colony, spheroplast, cell wall-deficient form, etc., and prove that it's all destroyed, we seek remission.
Your best bet for getting into better shape is to find and work with a *good* LLMD and to follow every lead for coinfections that might be holding back your treatment efficacy, and to try new meds or combinations of meds, and perhaps new alternative support and treatment methods in conjunction.
Many people take several years to reach remission with treatment. It seems that is the norm. You must come to the place where you accept that once you have had Lyme you have Lyme, and if you are symptomatic it must be treated into remission.
Treating tick borne disease symptoms as if they are post-infective or autoimmune, with the typical meds for that, will cause damage, not long-term return to health.
If you are still in denial about Lyme being a persistant infection even after very long-term antibiotic therapy, I'm sure many of us here would be happy to provide you with links to scientific and medical research that proves that fact out. There are also many studies showing patients diagnosed with MS as having had Lyme all along.
This is not the advice of a medical professional, just another late-stage Lyme patient that's worried for you and understands your concerns and wanting to deny Lyme. You need to see a very good LLMD to get your hope and strategic planning back.
[ 03-14-2009, 04:16 PM: Message edited by: nenet ]
Posted by painted turtle (Member # 7801) on :
Hi Nenet,
I appreciate your response and I agree I do need to get hope and strategic planning back.
Just, for me, it's totally not black and white. I don't think I can say for certain that this is not post infection or autoimmune, but even in being open to that possibility doesn't mean I will go down the pharmaceutical route for it.
Is it possible this is both infectious and autoimmune? Both Lyme and MS?
I'm completely on my own with this. I do keep up on the research and the only study report that long term antibiotics (IV) helped but problems returned.
I don't think I have a lot of faith in remedies actually working anymore. I don't trust the underground nature of treating lyme even though it saved my life. I get suspicious when I have to pay out of pocket for labs to say I have this and that....outrageous sums of money that other labs don't do.
I know the lyme adds up. Totally.
At the same time, over time, things have changed. I no longer have a lot of the life threatening things but now it is like I am broken. I reached a plateau. I just don't trust any of it, ducks or LLMD's and I am not sure why, except to say that the damage done by the fight to get treatment like a rat, is almost equally proportional to the damage done by the disease.
Perhaps.....I will find a way. I do know that acupuncture was very beneficial while I was doing that but a person only has so much money to spend.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by painted turtle:
So if my neurolgist knows that MS does not cause joint pain and I reported joint pain getting worse....then why would he suggest MS?
Because that is all he knows about. He knows nothing about Lyme and doesn't know how to treat Lyme. Why would he want to lose you as a patient?
Posted by Lymetoo (Member # 743) on :
Painted said,
"Is it possible this is both infectious and autoimmune? Both Lyme and MS?"
I think it is possible.... but your symptoms sound more like Lyme disease.
Posted by painted turtle (Member # 7801) on :
Lymetoo,
The thing I don't get is that people are happy to have a lyme diagnosis over MS because they think it is curable.
This is not true in all cases!
Posted by Lymetoo (Member # 743) on :
True.. but there's a chance!! I'm doing well myself... counting my lucky stars.
Posted by painted turtle (Member # 7801) on :
I'm curious if doing well is a relative adaptation or if you really are doing well?? Know what I mean?
Posted by Capa (Member # 18930) on :
I have also wondered if it is possible to have both Lyme as well as MS. I had late-stage Lyme 10+ years ago and although I have neuro symptoms now all of my tests are negative. While I realize others are in the same boat it does make me wonder if I have (or am developing) MS as a result of Lyme.
Has anyone heard of this happening?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by painted turtle: I'm curious if doing well is a relative adaptation or if you really are doing well?? Know what I mean?
I hear ya! I'm able to do just about anything I want to, short of running a marathon.
Posted by liesandmorelies (Member # 15323) on :
I believe it's only an autoimmune response until they prove what is actually causing it i/e Lyme, then all of a sudden it i/e MS wont be called an autoimmune response. Until then many ppl are being dx with MS and all the other autoimmune things like cfs, fibro, als, Alzheimers.
I am not saying all these things are caused by Lyme, but I do think very exact things like bacterias are causing them to occur and they are putting a band-aid on it by giving it another name.
Posted by MY3BOYS (Member # 17830) on :
I fit into this lyme (cdc +)/ms area myself ..gonna try to finish the thought I started way up in this thread, and guess my add set in...
ok...ms is post-response to infective assult. the cause is unknown.
studies have shown bb can bind bacterial dna with host cell dna/ found at columbia in what began as alz brain studies, and findings went in diff. direction.
so, if a bacteria can alter ur intracellular dna to me this is the 2+2 of the lyme and connection to "autoimmune" in which the body attacks itself.
I guess I am lucky. llmd handels lyme abt and my neuro treats like would ms patient avoiding any immunosupression-- he is lyme friendly?? not sure if right word. but to him, my neuro symp. are ms all over.
I too have neuropathy. muscle pain, balance/coord. prob., vision, hearing. all aspects of my nervous system r affected. and I did think lyme was better dx than ms....now I have become educated.
just pls be making an educated disicion, I was mis-dx for so long, and do think those yrs on immunosuppressants is why neuro so bad now.
Posted by Capa (Member # 18930) on :
My3Boys, I apologize for my Lyme brain. Are you being treated for both MS and Lyme? Have you benefited from this (if I'm understanding you correctly)?
Posted by lymemomtooo (Member # 5396) on :
Turtle, I am not a dr, just in the trenches with this hell...
After reading some of the mold ghru's work, and if my memory is working, I think he implied that once the immune system attacks itself, as it can do with a bacteria infection, it can be like a domino effect of cascading damage to organs and systems.
Each person can be different but once the T cells go nuts, you can end up susceptible to many other ills. Not sure if the bacteria does it on it's own or if the a-foul immune system ravages and causes all of the damage...
But, again if I remember, I think even cancers were listed as possible outcomes.
Also consider Bartonella with CNS issues..I believe it is the major player with my lymies past out of her mind rages. She has damage from the bacteria for 10-12 years and been treated for approx 5. I see no time in the future where I can use the term cured!
Also when you have a teen and now a 22 year old who is mildly brain damaged, they know it all and are not as compliant as needed.
![[Razz]](tongue.gif)
I'm able to do just about anything I want to, short of running a marathon.