Beofre I was diagnosed in 2001, I thought I had MS- went to the Dr., had the tests, said it wasn't that. Then I self-diagnosed Lyme and have been in treatment on and off- 1 1/2 years with an array of meds and now for the past 2 with more meds-globs of it! I currently do shots of Calarotaxime (sp?) twice a day plus Flagyl. Anyway...I'm not getting better- fatigue and memory suck big-time. Doc talked about MS...but wanted me on IV but can't prescribe in my state so I went to another for that. She didn't feel I needed IV's but did find Epstein-Barr and HHV6-asked if I had done an MRI for MS and when I told her I had in 2001, she said i can't have it then.
My question- could I have developed MS along the way- alot of my symtoms are getting worse- how many of you have both- will an MRI reveal it if it didn't years ago- the tests were done (electic shocks, eye test) and they came back negative then.
I'm getting worried that I'm getting worse- also do detoxic with Chlostermine (sp?) as well.
I'm scared...
Posted by massman (Member # 18116) on :
IMO MS is lyme.
And your liver cannot detox stuff from the lyme, any co-infections and the drugs.
PM me if you want a referral to a great LLND in Austin.
Posted by DeniseNM (Member # 11182) on :
I was "diagnosed" with "probably MS" in 1998, due to one MRI that showed a few lesions. I believed that until about 3 years ago when I started investigating LYme.
Turns out Lyme causes MS. MS means you have multiple lesions in your brain/spinal column. IN other words, it's a description of a set of symptoms, and does not address a caustive agent.
An MRI can reveal white matter lesions. If they didn't see any years ago, they may see some now. Like I said, I have tons of them, which my non-LLMD neurologist insists upon calling MD, and my LLMD calls Lyme. Same problem, different label.
SO - IMO, MS is Lyme and Lyme is MS, at least for most people. If you get neuro symptoms or MS-like symptoms and you have Lyme, you have Lyme-induced MS (that's what I tell people).
I think a really good LLMD or LLND could help you and would strongly recommend that you see one.
I was scared and continue to be scared, because the holes in my brain continue to grow in size and number and I can't seem to get started on any effective treatment due to either a really bad gut or really bad herxes, don't know which.
But I'm working with my doctors to sort it out and I WILL get better! So will you!
Posted by dmc (Member # 5102) on :
also do a MS search here -it's under the "post a poll" button at top of page. It's not in bold so easy to miss.
Posted by Keebler (Member # 12673) on :
- You never said if you were treated by an ILADS LLMD. Were other tick-borne infections considered? Were all stages and forms of the lyme addressed?
It can still take years to treat lyme and you also need to know that lyme destroys the myelin sheath around nerves and also causes lesions just as "MS" does.
Usually, "MS" is just an umbrella term. Often, lyme is the underlying infection although there could be other chronic stealth infections as the cause, such as Cpn (Chlamydia pneumonia). I'll put a link below for that.
This the the most important article on this topic, be sure you see both pages:
After much controversy a considerable body of evidence now demonstrates a firm causal connection between chronic infection with the primary respiratory pathogen Chlamydophila (Chlamydia) pneumoniae and at least some variants of the neurological disease Multiple Sclerosis.
These web-pages review the evidence. References are cited. [Treatment is discussed.]
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Posted by Marnie (Member # 773) on :
Lyme...bacterial
MS...viral...maybe EBV or HHV6, we don't know - thyroid hormones help as does prolactin.
MS = myelin sheath destroyed.
Lyme = Hg accumulation destroys Bb's proteins AND the proteins around our neurons. Immune system is upregulated one way and this can -> the inability to fight off infections that need the OTHER immune response.
The body has to chose...which infection/which pathogen to go after....
***which one presents the biggest immediate threat.***
Which is why lyme can (and has) gone into temporary remission when someone gets a simple "flu" (virus).
Basically there are 2 major pathways the body uses to defend us from pathogens (in reality there are 3): a Th1 pathway OR a Th2 pathway.
Both cannot happen simultaneously.
During pregnancy, the immune system quiets down because we can't attack the fetus (which is not unlike getting an organ transplant...something different from "self")
Posted by Keebler (Member # 12673) on :
- Also to be considered is the newly discovered retro-virus XMRV, as found in many patients with the label of "CFS" If you want more on that, search for the CFIDS Association's website.
Often, patients with one chronic stealth infection will have others, too. The key is a good doctor who has the mind of a detective and knowledge of the full range of stealth infections.
---
Definition of sorts:
A STEALTH infection can be described as hidden from normal processes of detection (or tests are not yet developed) but powerful, destructive and tricky beyond belief. The ability of hiding from the immune system is a prime method of operation for stealth infections.
Sometimes, with cycles of action and dormancy.
"Stealth infection" is not a term that most doctors will be aware of but a term borne of research in the field of CFS and Tick-Borne Infections or Cpn, HHV-6, etc. Usually "stealth" infections are chronic due to the inability (or incompetence) with quick diagnosis. But they are also notorious for being very difficult to treat in the normal way most doctors think or work.
Specific combination protocols that take time have helped many patients with such infections. -
Posted by Pinelady (Member # 18524) on :
I think Lyme is MS.
Posted by coltman (Member # 21272) on :
I wouldnt say all MS is lyme. Most probably a fair share of MS is caused by chronic bacterial and/or viral infection. - Could be anything though , maybe the bacteria we didnt identify yet as pathogenic. And its probably compounded with environmental and hereditary factors
Posted by massman (Member # 18116) on :
Good points coltman.
And in studying I have done with Dr. U who has studied with Dr. K, bacteria, virus, yeast etc. are all opportunistic and have a party together.
Posted by dmc (Member # 5102) on :
From a post on CT Yahoo Lyme Group
"This is an old article from Time Magazine I uncovered while compiling references for my "Lyme on the Brain" talk.
Notice that the newly formed National Multiple Sclerosis Society dismisses Dr. Rose Ichelson's research that spirochetes cause MS, simply because they assumed that an infection passed between human to human would have to infect spouses and siblings more often.
They never made the connection that the infection was passed to humans by a tick bite.
In 1957 all research on MS and spirochetes pretty much ended as the Multiple Sclerosis societies of the time pushed for a viral model of the disease which has never panned out. Over 5 decades of MS/spirochete research in Europe was disregarded and ignored ! Tom Grier
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Time Magazine Medicine: MS & Spirochete Monday, Jun. 24, 1957
Multiple sclerosis victims (about 250,000 in the U.S.) were anxiously wondering about a possible clue to their mysterious disease, which is marked by near-total loss of muscle control. (It happens when the myelin sheath, a fatty insulation around nerve pathways, degenerates for unknown reasons, thus short-circuiting nerve signals.)
Philadelphia Bacteriologist Rose Ichelson, 59, reported success in cultivating an obscure microbe, Spirochaeta myelophthora, which she has found in the spinal fluid of MS victims.
Inference: multiple sclerosis is caused by the spirochete, and early attack on it should lead to cure or alleviation.
Trouble is that nothing conclusive connects the germ with the disease. (A dozen better-understood diseases have been attributed to microbes that were later proved not guilty.)
If MS is laid to infection, it becomes almost impossible to explain why it so rarely attacks both husband and wife, or both of identical twins.
Said the National Multiple Sclerosis Society guardedly: now that Bacteriologist Ichelson has published her long-awaited method for cultivating the spirochetes, other scientists can check whether they are really found only in MS victims. If so, an effective treatment might still be years away....
Posted by coltman (Member # 21272) on :
quote: In 1957 all research on MS and spirochetes pretty much ended as the Multiple Sclerosis societies of the time pushed for a viral model of the disease which has never panned out. Over 5 decades of MS/spirochete research in Europe was disregarded and ignored !
Sad, sad state we live in. Most of medical progress in the area of infectious diseases was actually made in in 1940-1960s. - Most major abx classes were discovered back then, most research done. Pharma companies keep putting "new abx" to market which were actually discovered back then and only FDA approved recently.
I wonder what it will take to sway the mainstream research back to researching the infectious origin of "idiopathic" diseases - I mean it took 30 years for ulcers bacteria to be recognized.
Posted by massman (Member # 18116) on :
"it took 30 years for ulcers bacteria to be recognized. "
And here in the US it took another 10 years to admit it 'cause we didnt say it, Australia did.
IMO that is a good definition of arrogance.
Posted by Sojourner (Member # 9424) on :
Yes indeed, a paradigm shift is a difficult thing for a society.
I won't mince words..............MS is bacterial. That doesn't mean we know how to treat it.....but I'm sure it is.
Posted by dmc (Member # 5102) on :
I was a relief to me finding out Lyme was the cause of my "ms". Even the founding MD of LDN (low dose naltrexone)in 2001 ask me if I was tested for Lyme...
Little did I know from 1988 till 2003, the only Lyme tests I had had done was the ELISA. Of course all were negative.