posted
Hey fellow lymies, maybe one of you has an idea what might help me against my lyme encephalopahy. I tried alpa lipoic acid and it clears my mind but makes me sick to my stomac. I am so sick of it, Ive had it for five years and I used to study philosopy and I love it. Now I am not even able to read novels. Does anybody have an ideas what to use to overcome this cognitive loss? Thank you, Pet
Posts: 56 | From Bonn, NRW, Germany | Registered: Oct 2003
| IP: Logged |
posted
petra i started iv doxy abt 5 weeks ago, and it has made a huge improvement in encepalopathy. I can read again, drive, and cook. I still get confused abt some things like how to fold clothes, but I'm improving at a steady rate.
I hope you can find a way to feel better soon.
Posts: 663 | From NH USA | Registered: Sep 2004
| IP: Logged |
I tried numerous supplements including ALA, rhodiola, and DHEA, and nothing really made a noticeable difference for me, although they came recommended by others on this board.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
I had the encephalopathy alot and it hardly ever went away. I was on Lyme treatments off and on for three years. The IV's just made the pain dim down but never go away. I had a Brain SPECT scan and it showed the imflammation/vasculitis.
It wasn't until I met Dr. B on Long Island last year and he did Igenex Babesia tests- FSH, IGM/IGG that I got a positive. All my other doctors and MDL Labs missed the Babs. AFter long treatments for the Babs- Had a lot of neuro symptoms at first but over the past few months the inflammed feeling in my head has really died down- to the point where I don't even think about it sometimes.
I have to think in my case it was more the Babs causing the encephalopathy than the lyme or a synergistic combination between the two. The pains were bad and I am so relieved to finally have some relief. I am still struggling with the Babs/Lyme but this makes me hopeful because this one symptom has improved so much!
Dr. B gave me a great paper/article he had on how malaria effects the brain, etc. It can really do a number on you so make sure in every possible way you know if you have the Babesia or not.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
posted
mino is great for encephalapothy...it has the greatest bbb penitration...I have severe encephalapothy and am much better now....it takes along time to turn the situation around...mino is my choice as it can cross the testes barrier as well...that is another hiding spot of lyme disease...talk to your doc about it... eric
Posts: 593 | From long island ny | Registered: Apr 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Petra.
What antibiotic regimens have you tried? Sounds like you're stuck! I'm a little stuck too, right there with you, though just in treatment for a year.
I am interested in Eric's minocycline comment as well, though I fear it a bit, as it seems like people here herx nearly to death on tiny doses of it.
What does your LLMD suggest next for a plan?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
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