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Old 11-20-2007, 09:11 PM   #1
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kyle1 HB User
Antibiotics for chronic neuro lymes disease

What are the best antibiotics for severe neuro lymes disease. I am looking for a good regimin to ask my doctor to put me on to get through the blood brain barrier. I have severe nero problems with this disease.

Thanks Kyle.

 
Old 11-21-2007, 07:17 PM   #2
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Re: Antibiotics for chronic neuro lymes disease

Hi Kyle. I am sorry your symptoms are severe. Have you recently been tested for the co-infections? Sometimes when progress is not being made, it is because co-infections are present.

Have you been getting treated continuously? What are you taking now?

Which antibiotics are best depend on several factors including if co-infections are present, how long you have been sick, the type of symptoms you have, etc.

Are you seeing a Lyme doctor?

 
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Old 11-22-2007, 07:31 PM   #3
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Re: Antibiotics for chronic neuro lymes disease

IV antibiotics can be really helpful for neuro-Lyme because it can get through the blood brain barrier.

 
Old 11-28-2007, 07:40 AM   #4
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Re: Antibiotics for chronic neuro lymes disease

Hello Kyle,

I am new here. I have had serious symptoms for over 3 1/2 years and never really got the doctors to put it all together. I had to push for my treatment. I am finally on IV antibiotic, rocephin. I have had about 10 days of treatment so far and haven't seen much change. It is very difficult to measure how you feel since my symptoms were cyclical and at times I felt okay and other times awful. I still have no energy and need lots of sleep. I struggle through the day. The pains and aches aren't the prime cause of my discomfort anymore, i can live with it, but the fatigue and lack of mental clarity has really been the issue. I was on 5250 mg of amoxycillin for a few months and have graduated to the IV. Unfortunately, my insurance company doesn't agree and I am being forced to pay huge checks each week for my treatment. i am fighting the company, but they have more lawyers than i have. All in all, it is a depressing issue to be stricken with something as chronic lyme. Sometimes i feel that people do not even believe that i feel as bad as i do. I wish you luck.
I hope this board will supply some of the needed support that we all need to move on with our lives.

Gary

 
Old 12-05-2007, 05:38 AM   #5
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Re: Antibiotics for chronic neuro lymes disease

Gary....sorry to hear that you are having insurance problems. I also thought I was pretty well covered, but my latest prescription set me back a fair chunk of cash.....I really feel for you. As if this disease isn't bad enough already without being left to hang out to dry....

Gary, Ticker & others....
My doctor also is thinking about IV. Do the insurance companies require a positive test to pay up? I tested negative, but I do have a SPECT scan showing Lesions (at last some evidence that I'm not making it all up!)....but will this be good enough? My doc did mention spinal tap....anyone have any experience with this? How does it work etc....

Sarah

 
Old 12-12-2007, 03:14 AM   #6
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Re: Antibiotics for chronic neuro lymes disease

As I recall, of the oral abx, both Minocycline and Tindamax do a decent job of crossing the blood/brain barrier. Definitely get on a cyst-buster while you are taking the IV meds, or the disease will come back when you stop IV meds...

 
Old 12-16-2007, 05:59 PM   #7
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Re: Antibiotics for chronic neuro lymes disease

Hello Gary and welcome to the site. The journey into Lyme's Tx. is long and arduous but there is light at the end of the tunnel and is not an incoming freight train. Ticker and others at this site provides me with enormous quality info about the dise4ase process and treatment. As my LLMD in NYC explained to me 4-1/2 mos. ago, I have every classic symptom of neuro-lyme. He just stopped Rocephin IV and other abxs. Except one. I feel really good except for muscles twitches. I feel very lucky I found a very knowledgeable and caring LLMD. For now, he wants me off most meds. and start some IV. immune system boosting bag 2X/wk. As far as insurance co. paying for tx., I suggest you start thinking of plan B and C. But keep on fighting it. Try going to your private doctor. Explain your situation and ask he/she to call drug makers and to give the doctor a price for powder meds. Your doctor can negotiate the price much better than you can. Basically, your doctor should have no problem getting you a 2 full month supply for no more than $350.00. As per the IV supplies, same thing. You really don't need a 50 or 100 cc bag of saline. Your LLMD can instruct you on using a 30 cc syringe and saline instead of the bags.It's a lot cheaper than the small bags even though the ammount of saline ends up being the same.. It will bring the cost down a lot. Just write a list of supplies you'll need including needles and heparin flushes, take to your private doctor and hopefully he/she will have a heart big enough to negotiate prices for you. Never underestimate the power of a Nurse. If you know one, well, your problems can be over. Picc line kits and a Picc certified nurse to change your dressings, etc.... You got my drift.
Anyway, wish you lots of luck.

Last edited by Tony64; 12-16-2007 at 06:03 PM.

 
Old 12-19-2007, 05:17 PM   #8
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Re: Antibiotics for chronic neuro lymes disease

What are the symptoms of neuro lymes. I have been diagnosed with chronic lymes and it seems to be mostly affecting my cognitive behavior, getting out words, brain fog and stuff like that. Also, I have some eye tracking problems, low light double vision that the opthomologiat says does not look like typical MS, at least not yet.

I had read an article by Dr. Donta of Boston. He did research on macrolide class of antibiotics (clarithromyosin and others) in combinatin with the malaria drug called hydroxychloroquine. 500mg of the former 2x a day with 200mg of the later 2 x a day.
HIs study showed this class of antibiotics to work better when used in combination with
the malaria drug. It allows for a lower ph inside the cells and thus makes clarithromyosin more effective. There was no difference when used with doxy.
****** the article "Macrolide therapy of chronic lymes disease"

 
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