I've done some research on this, but I'd like to hear people's opinions and experience on these subjects.
1. Which antibiotics work best for neuro Lyme symptoms?
2. In particular, how does Bicillin stack up against Rocephin?
3. How useful is Biaxin for neuro problems? How well did you do on it?
Thanks in advance,
- Andrew
[ 16. May 2007, 09:25 PM: Message edited by: AndrewInCA ]
Posted by kitkat32 (Member # 9682) on :
Andrew,
I am definetly not an expert but I can go by what I take and what my LLMD said.
Orals like amox. zithro and flagyl worked well for me for joint issues, chest pain, palpitations, etc. They really didn't combat my neuro issues enough.
I was just put on Rocephin and I have already noticed a difference. I have been on it a week now and my insomnia is gone and my color vision has returned.
I still have other neuro issues to deal with and I am hoping over some more time they will resolve too.
I am not sure about Biaxin. I have never taken that.
My thoughts also seem a bit clearer.
Hope this helped, kit Posted by timaca (Member # 6911) on :
I was quite ill with neurological lyme. It took 4 1/2 months of IV rocephin (plus some oral ketek then oral doxy) for me to feel like I was in the land of the living again. I was on the IV rocephin for 6 1/2 months.
Then I went to IM bicillin. That was not nearly as effective in me. Due to C. difficile, I couldn't do oral antibiotics for all of 2006.
I haven't used Biaxin.
Timaca
Posted by CaliforniaLyme (Member # 7136) on :
IV ROCEPHIN is the best for neuro Lyme
BUT
IM Bicillin is SAFER!!!!! I was progressing very very quickly and frankly, dying, but if I had more time and a slower progression I would have done IM Bicillin!!! Because there is almost zero risk as opposed to Iv where there IS a risk of death from IV complications!!!!
Posted by Boomerang (Member # 7979) on :
Oral Biaxin didn't do much for hubby.....everyone is different though.
I'm hoping and praying IV primaxin helps neuro!!
Posted by robi (Member # 5547) on :
Mino heped me. But neuro sx came back after i stopped. Probably stopped too soon.
robi
Posted by Beverly (Member # 1271) on :
I was on Doxy and Mino for a couple of years, it did help, but I made the most progress on a combo of Zithromax, Plaquenil and Malarone.
Posted by David95928 (Member # 3521) on :
My experience is that Bicillin isn't fast but tends to give stable results. I have no regrets about going that route.
Posted by caat (Member # 2321) on :
A combination of 4 weeks rocephin and flagyl followed by high dose ceftin and tinidazole got rid of my neurolyme. I am 99% sure. I needed large amounts of fluconazole as well to control systemic yeast- a biggie with that combo.
From personal experience I beleive it is MUCH MUCH easier to tolerate flagyl or tinidazole after the blood brain barrier has healed to some extent. For me that took a little more than a week on rocephin. HOWEVER, I had had 3 years of mostly doxycycline. This helped in 2 ways- the herx was less, and the bacterial load was probley less. YMMV...
I did years of reading before hand and I honestly beleive this combo WORKS for late chronic neurolyme. Doesn't have much effect on bartonella or babesia though...
Posted by caat (Member # 2321) on :
>>2. In particular, how does Bicillin stack up against Rocephin?
some people have good luck with Bicillin but it doesn't cross the blood brain barrier...
Neither attack the cyst (egg) life phases of lyme- both attack the adult stages.
flagyl and tinidazole attack the cyst phases.
Posted by Vanilla (Member # 11155) on :
A number of people have written that Bicillin does not cross the brain barrier. That may be butI have to say that my neurocognitive symptoms are very much alleviated and, even four years into treatment, are still subtly improving.
Posted by AndrewInCA (Member # 2010) on :
I have an abx spreadsheet I found around here somewhere dated December 14, 2004 that lists all the characteristics of each, including intracellular and CNS penetration.
For CNS penetration, both Amoxicillan and Bicillin are listed as "variable". Not sure what that means (dose-dependent?)
My LLMD, who I just saw yesterday says he has about as much success with Bicillin as Rocephin for neuro Lyme.
David - how much Bicillin are you on per week?
- Andrew
Posted by David95928 (Member # 3521) on :
Andrew, my dosage is 12. MU of Bicillin LA three times a week and 500 mg. of Biaxin twice a day. I've been on this for four years and have had no problems and no relapses (knock on wood). My doctor had not used Bicllin before I came along. It was my suggestion. He says I've had the best recovery he has seen. So, I think it's a pretty good regimen.
Posted by 5dana8 (Member # 7935) on :
HI Andrew
Oral biaxin helped me alot & so did doxy . I think the two may also have hit some of my co's as well. Sorry never tried bicillin.
But what may help one person may not always be effective for another. I think it may depend on what strain you have.
Here's a couple of links on abx that cross the Blood brain barrior:
make sure to talk over everything first with your LLMD
Posted by Jill E. (Member # 9121) on :
I've been on Bicillin for one year. It hasn't done anything for my neurolyme. In fact, visual disturbances are worse, but that could be toxins.
Bicillin does seem to keep my stamina fairly stable.
I know many people swear by Bicillin, but for me, it has not been worth the cost or hassle. But I asked my LLMD to let me try it to see if I could postpone IV.
Jill
Posted by bejoy (Member # 11129) on :
Does anyone know why Bicillin seems to be the only IM therapy? I have heard of people getting Rocephin shots, but not for lyme.
Posted by AndrewInCA (Member # 2010) on :
Rocephin shots are painful - too much volume to do easily. I had them the first two or three days before my picc went in (way back in 2002).
Plus, once Rocephin is in liquid form it has to be used within a week. Bicillin has a much longer shelf life I believe.
I would like to know if there are other Lyme abx available in IM form???
- Andrew
Posted by AndrewInCA (Member # 2010) on :
Jill E,
What Bicillin dosage are you on? David mentions 1.2 MU 3x/week. I was on 2x/week.
- Andrew
Posted by David95928 (Member # 3521) on :
In my experience, IM Rocephin is not bad at all so long as it is mixed with lidocaine rather than water. Without the lidocaine, they are the most painful injections I have ever had. And generally shots don't bother me at all.
[ 18. May 2007, 10:05 AM: Message edited by: David95928 ]
Posted by CaliforniaLyme (Member # 7136) on :
I met someone once on IM Rocephin for Lyme- and she also said it was very very very painful! so maybe that is why-
Posted by peter j (Member # 11825) on :
AndrewInCA, I believe that doses are very important when you ask this question. I've used low dose doxy, with no result, and from just increasing the dose with 100mg - BAM - I herxed like �@@€/]
The antibiotic penetrates the brain much better in higher doses ...
Posted by Danser (Member # 7373) on :
My husband had some success with IM bicillin along with doxy and flagyl. But then went on IV rocephin. We don't know if it would have been effective because he developed a pulmonary embolism and had to have the PICC line pulled.
He is now seeing a doctor who doesn't use IV ABX. He's on mino and suprex and is sleeping without sleep meds for the first time in 10 years. He also is slowly getting more energy back and some relief from pain. His doctor thinks this is the BEST abx for neuro lyme.
Posted by DolphinLady (Member # 6275) on :
Rifampin has helped me alot.
Posted by BOEJR (Member # 1734) on :
Hi Andrew,
If you can afford it try adding in some Hyperbaric Oxygen. It facilitates the antibiotic crossing the blood brain barrier and CNS.
Julia
Posted by Vermont_Lymie (Member # 9780) on :
Hi Andrew,
Amoxcillin in higher doses than normally prescribed is used also for neuro symptoms.
I am taking 7g/day amoxy, for a couple of months. It is helping neuro symptoms, but only more time will tell if it resolves more of them. (I weigh 135 pounds).
[ 21. May 2007, 01:49 PM: Message edited by: Vermont_Lymie ]
Posted by savebabe (Member # 9847) on :
IM bicillin along with ketek and plaq worked the best for me. I used this combo for months and was able to kick many of my symptoms.
Posted by LymeinNJ (Member # 7805) on :
I was on oral ketek for 12 months. During that time, I was also prescribed rifamprin for 3 months and then flagyl for the last two months. I saw steady and significant improvement during that time.
I then switched to a different LLMD who prescribed Biaxin and Tindamax for ~6 months. I was symptom free for more than 2 months, and decided to go off abx.
Remission, thou art heavenly! I was symptom free for a total of 8 months. The return of the symptoms was akin to being struck by a bus head on.
I am now back on Biaxin and Tindamax and have seen much quicker recovery than last time.
My two LLMD's both felt IV, while preferrable, was not a viable option, since my insurance only covers 6 weeks and I could not afford paying out of pocket. Both Docs felt 3-6 months would be a minimum for IV.
I have also dabbled with a variety of herbal supplements on and off.
In sum, I agree with many who feel there are many "right" paths to recovery. Let your body and LLMD be your guide to the right abx.
Best of luck healing to all!
Posted by lymebytes (Member # 11830) on :
Andrew, (as you already know from me) the Biaxin/Amoxi has helped my nuero lyme the last 9 months, I thought it was the Biaxn. But I am starting to believe (as post above) that Amoxi may be responsible! I recently tried decreasing Amoxi and right away neruo symptoms came back strong.
On the other hand I once heard an amazing story of someone with neuro lyme (very bad) and one year of Biaxin put him into remission. Maybe it is the combo, or not. I'd prefer my LLMD ramp up my dose of this combo than switch me to Rifampin, although I know Rifampin has helped some people as well, including my sister. Take care.
Posted by Rianna (Member # 11038) on :
You really should have all 3 classes
Ceftriaxone/Bicillin - for motiles although remember both of these will push motile in to cysts Ketek or Macrolide -for Intracellular/CWD Tini or Flagyl -for cysts
You would start on Ceft/ketek for a few months to get the motile load down before breaking cysts and then be on all 3 together.
I personally did 2gms bid 4days per week
If your going on Ceftriaxone dont forget to take Actigall so you dont lose your Gallbladder
Posted by jasonsmith (Member # 10914) on :
I've heard of docs using Hydrogen Peroxide via IV to oxygenate the blood. ???
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