posted
Are you on IV meds? It really helped my neuro issues. I took 6 months oral meds and I kept sliding backwards. 4 months of IV and I was out of my chair. Babs is treated by anti parasite meds like mepron, malarone and herbs like artimisinin
Posts: 303 | From green bay, wi | Registered: Mar 2009
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
If you are with an ILADS LLMD, then your LLMD will have access to the #1 ALS/Lyme expert, who is the current president of ILADS. We had the opportunity to sit beside him at the ILADS 2009 Conf. in San Francisco and to speak privatly with him during breaks between talks. He is a recovered ALS/Lyme patient himself.
What he told us is that it's important to begin treatment before the ALS patient is in a wheel chair because the Herxing can be too hard and can set the person back if his/her ALS is too advanced. He stated that he was only a few weeks away from being in a wheel chair himself when he began IV antibiotics for his ALS caused by Lyme. He told us privately that advanced ALS patients tended not to do well with IV antibiotics because the heavy Herxing was too hard on their bodies.
That was his opinion at the time. Perhaps he and other ILADS LLMDs who treat ALS have had other more positive experiences since then.
Do keep a good set of daily journal notes because doing so will help your doctor to help you -- and your experiences will be also useful to him in treating other ALS patients as well.
I do know that it took this man several years to reach the point of recovery that he could function again at close to an optimum level. Even when we saw him, he admitted that he had to miss some of the conference sessions in order to rest in his hotel room, but one wouldn't have been able to detect that he had ALS by observing him.
Trust your LLMD and stay in close communication with his/her office because s/he can tap into this man's vast resource of experience in treating ALS/Lyme. THe ILADS LLMDs are learning new ideas at an exponential rate now.
I can think of only one other thing besides antibiotics that has been tried in ALS and that is IV glutathione, but I don't know what the long-term results of those trials were. I also don't know how or when it is administered, whether during IV antibiotic therapy or sequentially, either before or after IV antibiotics. You can ask about it though or you can research it on the internet yourself for more up-to-date info about it.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto. I hope you have an excellent ILADS-educated, ILADS-member LLMD to conquer infections and one who is also current with antioxidants and nutritional support to help the liver, kidneys and adrenal system.
Heavy metals, mold, other environmental considerations and gluten are also areas in which I hope your LLMD is well informed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that you posted in "Seeking a Doctor" just last week but have received no reply as of yet. So, CT folks:
Is there a CT llmd who has had success treating many ALS patients? I know there's no cure, but sometimes people are misdiagnosed (hopefully I'm one of them!)
[2young2die] -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
(PS. I know many people who've got worse with doxy if the have ALS like symptoms)
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
The real question about XMRV though is whether there is any good treatment for it because most doctors claim that you can't treat a virus. If there's not treatment for it, then I wouldn't want to waste limited funds in being tested for it. Nor would I want my insurance company to have an excuse to say that since it's XMRV then there is no point in paying for any therapies. Personally, I wouldn't seek an XMRV diagnosis for all the tea in China.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
posted
I don't think people can be given an XMRV diagnose (correct me if I am wrong) because the XAND isn't a official diagnose yet.
Right now nothing exists as a treatment for XMRV, but there are several things in the pipeline: ARVs, different combinations of them.
This is not about XMRV; but I also think this finding might be relevant for ALS (I don't know of any studies where they have tried monoclonal antibodies for ALS, but they are using monoclonal antibodies for the somewhat related disease MS). Perhaps this would become a future therapy for ALS.
MS:
quote:The authors found that the total numbers of lesions was significantly reduced in rituximab-treated patients compared with placebo-treated patients at each of the study time points. The mean number of lesions at week 24 in the active treatment group was reduced by 91 percent to 0.5, compared with 5.5 for controls.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic