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Old 08-25-2008, 11:01 AM   #1
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kyle1 HB User
oral antibiotics for neuro lyme

Hello,

I am suppose to be starting IV treatment for chronic lymes disease this week, but because of my dirty job and college starting this week I have decided to wait till the end of the month to start because by then I will be done with my job for the winter. My question is what is a good oral antibiotic regimen for neuro lymes that isn't so hard on the system that causes alot of diarhea and stomach issues. My main issues with lymes is the neurological issues. I heard flagyl is a good one but it has alot of side effects. Has anyone used Tindamax, or minocycline for neuro lymes? If so what was your side effects of those and did they work well? I have about 60 or pills of Doxy left over from a surgery I had, would 200mg a day be enough to get through the blood brain barrier? Any help would be greatly appreciative because I just started college and my mind is not with me at all.

Thanks

 
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Old 08-25-2008, 12:03 PM   #2
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Bill S HB User
Re: oral antibiotics for neuro lyme

Quote:
Originally Posted by kyle1 View Post
Hello,

I am suppose to be starting IV treatment for chronic lymes disease this week, but because of my dirty job and college starting this week I have decided to wait till the end of the month to start because by then I will be done with my job for the winter. My question is what is a good oral antibiotic regimen for neuro lymes that isn't so hard on the system that causes alot of diarhea and stomach issues. My main issues with lymes is the neurological issues. I heard flagyl is a good one but it has alot of side effects. Has anyone used Tindamax, or minocycline for neuro lymes? If so what was your side effects of those and did they work well? I have about 60 or pills of Doxy left over from a surgery I had, would 200mg a day be enough to get through the blood brain barrier? Any help would be greatly appreciative because I just started college and my mind is not with me at all.

Thanks
I used Tindamax for 6 months with no ill effects, and only a very slight metallic taste in my mouth. I had previously tried Flagyl and it did not agree with me at all; I had major metal taste in mouth and tingling in the limbs - I had to discontinue it.

My LLMD uses Minocycline on alot of his patients, but I couldn't tolerate it and had to use Cefzil.

200mg of Doxy isn't going to cut it. My previous LLMD had me on 400mg a day and it was working pretty well. I did have to take alot of acidophilus with both regimens to help with the Candida growth, and despite this, I did develop some yeast problems.

 
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Old 08-25-2008, 04:16 PM   #3
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luckeeluke HB User
Re: oral antibiotics for neuro lyme

kyle1-

maybe take a look at 1000mg (500mg twice daily) of Biaxin with 400mg (200mg twice daily) of Plaquenil. I've had really good results with those. Some people say the Plaquenil is hard to tolerate. All I know is that it is way easier to tolerate on my gut than the 1500mg of Tetracycline daily. Plus you can take the biaxin/plaquenil with food. Both of them have done wonders for me so far it seems, they may not do it for you, who really knows.

I've also had good luck with Samento/cat's claw. . . . just some ideas for you

 
Old 08-25-2008, 08:27 PM   #4
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kyle1 HB User
Re: oral antibiotics for neuro lyme

Quote:
Originally Posted by Bill S View Post
I used Tindamax for 6 months with no ill effects, and only a very slight metallic taste in my mouth. I had previously tried Flagyl and it did not agree with me at all; I had major metal taste in mouth and tingling in the limbs - I had to discontinue it.

My LLMD uses Minocycline on alot of his patients, but I couldn't tolerate it and had to use Cefzil.

200mg of Doxy isn't going to cut it. My previous LLMD had me on 400mg a day and it was working pretty well. I did have to take alot of acidophilus with both regimens to help with the Candida growth, and despite this, I did develop some yeast problems.

 
Old 08-25-2008, 08:28 PM   #5
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kyle1 HB User
Re: oral antibiotics for neuro lyme

Hi Bill,

First off thanks for replying. Did you use Tindamax on it's own or with something else with it?

Thanks

 
Old 08-26-2008, 06:13 AM   #6
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Bill S HB User
Re: oral antibiotics for neuro lyme

Quote:
Originally Posted by kyle1 View Post
Hi Bill,

First off thanks for replying. Did you use Tindamax on it's own or with something else with it?

Thanks
I used Cefzil 500mg 2x/day for the spirochete, and Tindamax 500mg/day for the cyst form. Also was on 4000IU Vitamin-D3 to reduce inflammation, and Benicar for the same reason.

 
Old 08-26-2008, 10:59 AM   #7
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kyle1 HB User
Re: oral antibiotics for neuro lyme

Hi Bill,

How long did you have lymes disease before you went on treatment? Did you have alot of the neuo symptoms as well?

Thanks

 
Old 08-26-2008, 11:26 AM   #8
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Bill S HB User
Re: oral antibiotics for neuro lyme

Quote:
Originally Posted by kyle1 View Post
Hi Bill,

How long did you have lymes disease before you went on treatment? Did you have alot of the neuo symptoms as well?

Thanks
Some neuro symptoms, mostly brain fog. See my story:

I started to get weird symptoms in May 2004. Wasn't diagnosed with Lymes til August 2004, and was pretty much incapacitated. Was given the "standard" abx of Doxycycline 200mg for 3 weeks. Didn't feel any better, and got a bout of C-Diff and yeast infection to boot.

Wandered from doc to doc (the worst and most useless was an Infectious Disease doc), got 2 more tests, both of which were CDC-negative, talked my regular doc into another regimen of abx, but he wouldn't try anything but the "standard" treatment. No effect. Was basically told that Lymes was hard to treat, and that I'd have to live with it.

I carried on until April 2006, with relapses, I'd suffer for a month or two, I'd recover a little, and carry on. April brought horrible changes in my life, and I had the worst relapse yet. Was totally flattened. Even worse, had a large section of my foot taken out because of possible melanona (thank GOD it was merely abnormal and it appears that they got it all). And my father in law was dying from melanoma to boot. I was on crutches unable to even put weight on my foot, had a forced move to a new house (bad neighbor problems) and couldn't even help my wife with her father. I was ready to roll over and die.

I was fortunate enough to find a local doc who was open-minded enough to try new treatments. Turns out that he and a couple people on his staff had contracted Lymes, so he was at least motivated to learn more about it and how useless the standard treatment was. I was tested again and had 4 bands on the Western Blot test. He started me on 400mg/day Doxycycline and it appeared to be helping. He put me on 5 months of Doxy and Tindamax for the cyst form. Then he announced that he was closing his practice and moving out of state :0

So I was back to square one, basically. I kept taking the abx while looking for another doc. A month later I found a Lyme Doc for my father in law in the next state over (he'd been bitten by 2 ticks on the same day; had 2 bullseyes). I ended up calling up that doc, and he's been a life-saver so far.

I had a major reaction to the Doxycycline; little red rashes all over my body that resembled vasculitis. My dermatologist sent me off for lots of tests, all of which came back negative fortunately (some of the possible causes were really AWFUL). My new Lymes doc put me on Minocycline in the hope it'd not trigger such a reaction. Poof, in ONE day, the rash returned. We're thinking I'm allergic to all the tetracycline drugs. Oh no!

He puts me on no meds for a month to allow my immune system to calm down. Once the month was over, he starts me on an interesting regimen of Benicar (to reduce the inflamation so the abx could get at the spirochetes more easily), Vitamin-D supplementation (I was very low onVit-D) and Cefzil. I was to start to take the Benicar but no abx. Interestingly enough, I started to get a few of the red spots during the period when I was ramping up the Benicar and NOT on abx (he later said that he thinks the Benicar has some effect on the Lymes spirochete, but that abx are still needed to effect a cure). We then started up the Cefzil.

After 2 months, we added in the Tindamax.

With this doc I was on:

500mg 2x/day Cefzil
500mg/day Tindamax
40, then 80mg/day Benicar
4000 IU/day Vitamin-D3
tons of acidophilus tabs
Fungal Defense
numerous other supplements to help support my system.

My doc is of the belief that Lyme's is primarly an inflammatory disease, due to the immune system reactions the spirochetes provoke. He uses the Vitamin-D3 25 hydroxyl levels as indicator of levels of inflammation in the body; low levels warrant Vit-D3 supplementation until the levels are consistenly high. He also believes that the Vit-D3 + Benicar combo helps reduce the inflammation that the cyst form of Lyme's creates around itself to hide in the body tissues. This allows the antibiotics to get at the cysts more effectively.

The Tindamax is critical for a "cure" in that it kills the cyst form. If you don't take it plus another abx at the same time, you will probably get a relapse when you stop the abx.

As for tests, he did a typical standard test regimen, plus specialized thyroid tests, stool tests (which detected major yeast overgrowth and food allergies to soy and dairy), several CD-57 tests, several Vit-D level tests, several Babesia tests (all negative).

All told, I spent over $6000 USD, with only about 10% reimbursement from insurance (out of network doc since I could NOT find an in-network doc who knew how to handle my case). Add in about $5000 in prescription meds and supplements. Add in about 2 years of not working much. Lyme's cost me about $40,000 all told.

 
Old 08-26-2008, 10:25 PM   #9
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kyle1 HB User
Re: oral antibiotics for neuro lyme

Hi Bill,

Again thanks for all the valuable information. I wish I could talk with you on the phone about your experience with this horriable disease. I too am going through absolute hell with it. I have had it for 5 years now and have been too every doctor known to man. I have spent so much money on this crap and still haven't got a treatment started. I just don't know were to start with this and to make it worse my doctor is trying to follow a out of network doctors protocol that I had went and seen in Millwuakee Wisc. So it's been really tough because my current doctor doesn't know anything about lymes and he is skeptcal on doing any of the treatments in fear of what might happen. I myself am scared because of what side effects might happen to me. So that's why I am trying to find a good regiman before I jump into this. My Doctor does want me to start on IV rocephin along with Flagyl and erythromiacin but I am worried that it's going to be hell on my system and I just started college. I do not want everything I worked so hard on to be lost.

 
Old 08-27-2008, 09:04 AM   #10
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chris0007 HB Userchris0007 HB User
Re: oral antibiotics for neuro lyme

[QUOTE=kyle1;3705353 I just don't know were to start with this and to make it worse my doctor is trying to follow a out of network doctors protocol that I had went and seen in Millwuakee Wisc. [/QUOTE]


Het Kyle,

Was this Dr. W in Milwuakee? If so, how did you like him? Why did you leave him? I'm in that area and have an appointment to see this doctor soon.

Trust me, you are not alone. My Lyme has basically debilitated me. I have horrible body numbness, right down to my rectum area (trust me you never want to know what that feels like.) I can't sit for more than 45 minutes at a time, or lay more then 90 minutes at a time without parts of my body hurting really bad. This has basically taken my life away. I can't eat any real food...brown rice, chicken, spinach, potatoes, and gluten free pasta 24-7 for the last 15 months and when I say nothing else, I MEAN I CAN'T EAT NOTHING ELSE. And using the bathroom is a nightmare. My feet hurt all the time and I can't be on them for more the 1-2 hours.

I'm not trying to win some award for having worse lyme symptoms then anyone else (TRUST ME), but what I hope you can take away from this, after I read that you can still go to work and possibly school, is perhaps you can take comfort in that you still have some part of your life functioning for you. I wish you the best of luck and hope you find a good doctor to get back to a healthy and happy life!

 
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