Lyme Disease Community
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Avatar universal

Just got diagnosis can anyone help?

Hi I was just diagnoised today with Brain Lyme disease. My doctor called it Teterary lyme (not sure of spelling)? They are admitting me to the hospital on Monday for a week and then I am having an in home nurse for 3 weeks come out daily for a total of 4 weeks treatment or IV treatment. I am scared after doing a lot of research that this is not going to be enough. I have been sick for 9 years and have been very ill for over a year (bed ridden). They finally were able to diagnos me with a lumbar puncture. My doctor said that 5 of the tests came back postitive but every blood test I had ever taken before that had been negative. It is such a relief to get a diagnosis but I am also scared I am going to do a month of this strong antibiotic and it isn't going to work. Has anyone out there done this? Does it make you sick did you get better? What are my chances of getting better? I know a lot of questions but I am just so confused after searching for answers for so long... thannks for the help Jodi
5 Responses
Avatar universal
I'm sorry about your illness.  I may have it as well.  I had the rash, have the neuro symptoms etc...anyway, I do not think 1 month will be nearly enough but it's a start.  You will probably get worse before better (herxheimer reaction).  Just my opinion but I think you will improve but not to 100%.  I personally do not think it is curable at this stage but is treatable and you can get your life back.  It can go into remission for periods and come out again from stress.  I had the rash, MS-like illness, improved on antibiotics only to have it come back years later after a surgery.
Avatar universal
PS - I was on Diflucan daily for the 1 1/2 years that I was on antibiotics, to help with systemic candida.

I do not understand how this site works, as I thought dr.s responded to questions. My messages haven't shown up by people I have written to, so I was surprised to hear from you. Please know that I would like to keep in touch; I know your losses.
I hope being in the hospital will help you.
Avatar universal
Doctors do not respond at his forum.  This is a pt. to pt. forum.  Doctors repond on the neurology and neurosurgery forum but it's tough to get a question posted.  There are also doctors that respond on the neurology forum.  It's pt. to pt. but doctors do respond there.
Avatar universal
I have had lyme off and on again for years. I just started taking Samento, Burbur, Pinella, and numerous other homeopathic meds. I feel better.  You can research this therapy prodocol online.

Be pro active , take antbiotics for at least a few months, not the 21 days the doctors originally thought would do the trick.  Mine keeps coming back at least twice a year.  

Good luck with the IV treatments........wishing you the best.
Avatar universal
Please look into Dr J in kansas! if you go to ****.com there is a post about Dr J protocol this would be really good reading for you!!!! he has helped alot of people that were on deaths door and has a specific program for lyme in your brain!
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