posted
Are IV abx an option for you?
Posts: 374 | From United States | Registered: Nov 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
As Snailhead mentions, IV might be more effective in your situation, as it sounds like the majority of your worst symptoms are centered on your CNS and brain. Neuro-Lyme needs antibiotics that will easily cross the Blood-Brain Barrier, and enter the CNS.
Oral Minocycline and Ceftin have some ability for this as well, but you might not see as remarkable an effect with orals. It really seems to depend on the person, and perhaps even the strain(s) of Bb you have.
Have you been evaluated for co-infections? Have you been re-evaluated recently? Many times when I read that someone was not responsive to their antibiotics, they later found that a co-infection, or a few of them, was missed, and once they began to treat that correctly, they started seeing marked improvement.
Lyme is not the only pathogen that can cause these types of symptoms, but it is a common one. I recently was able to understand the confusion of symptoms sets/syndromes and their causative agent like this:
You can break you leg in a hundred different ways, but you still have the same broken leg.
I know it's not the most eloquent, and maybe not the best analogy, but hey I have neuro-Lyme.
I would check out different antibiotics or IVs, and look into co-infections, and even look for opportunistic infections that can manifest from the immune suppression caused by Lyme and company.
I assume you have read many studies about Lyme being found in MS patients, ALS patients, and Alzheimer's patients' brains, etc. If not, I will try to gather some up for you. There are quite a few posted in earlier threads here as well, if you haven't had a chance to look yet.
posted
nenet- I have tested for all co's through Igenex but they came up negative (know they means nothing). I'm treating with high does oral rifampin for suspected bart and artemisia for possible babs and was on flagyl 2 months in case of mycro. I have seen and read about all these brain having BB in them, my question is what does that mean for us
snailhead - I don't have access to IV through my current provider but where there's a will and $$ there's a way
Posts: 16 | From MA | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You said you are trying to get an idea if people feel these diseases are all directly related to Lyme or they are separate diseases all together?
We can go beyond feeling they are related to KNOWING they are, in many cases. There is proof as many patients who had been dx with one of those, found out it was really lyme or other tick-borne disease (TBD) and got much better.
Now, not every case of MS/Parkinson's/ALS is TBD related, however, there has been such a surprising number successes that EVERY MS/Parkinson's/ALS patients SHOULD be thoroughly assessed for MS/Parkinson's/ALS (and other chronic stealth infections such as Cpn, mycoplasma, etc.).
The sad reality is that the doctors who treat MS/Parkinson's/ALS usually have no clue at all about these other stealth infections. None of this is taught in med school and the IDSA (Infectious Disease Society of America) has shamefully ignored this matter and most IDSA-member doctors settle for seriously under-treating such serious infections.
In order to be properly evaluated, it is best to see a LLMD who is an ILADS member. Here is that site:
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
Present a practical approach for making the diagnosis of neuroborreliosis,
Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
Discuss the relationship between MS and Lyme,
Critique the current regimens published for treating neuroborreliosis, and
Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.'' --Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
- Full 2-page article at link above
===========================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
So if it's MS/Park/ASL caused by TBD can you be treated and recover? Any other thoughts?
Posts: 16 | From MA | Registered: Feb 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
yes...I was labled MS for 17 yrs. Found our Lyme & treating. No more brain lesions ("MS" marker to ducks) nor any enhanced since in Lyme treatment.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Raki,
It sounds like you may not be seeing a Lyme Literate MD or an ILADS doctor. If not, or if your current doctor isn't aggressive enough, find one who is and go there promptly! You can't afford to waste time with someone who isn't treating you in the best possible way. Even though it may be more expensive, it would be WAY more expensive in terms of your life to not get the best treatment ASAP!
Have you seen Under Our Skin, the movie? You can still buy the DVD online through the end of the month. Dr. Martz, who had "ALS" that turned out to be Lyme is in the movie. It's worth seeing.
Also, you need to be evaluated for things like heavy metal toxicity, which is also implicated in these diseases. Many good LLMD's can do this.
Posts: 3792 | From around | Registered: Mar 2008
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