Biaxin

[kcdc3]

I have not posted here in a while because my dd was 99.999% cured while on Biaxin. We did a total of 60 days worth. We've been off of it now for 3 weeks and she is deteriorating daily. Dr. T has her on a prophylactic dose of Zith (1/2 tab twice a week) plus one Advil a day. I do not see that helping at all. I feel like the only thing to get her back to what we saw the past 60 days is to go back on the Biaxin again. Has anyone been on this stuff longer than 60 days??

[Megs_Mom]

Is there any particular reason that the Biaxin cannot be continued? I am not as familiar with the side effects of that abx, but if it is working so well, and each backslide can be clearly graphed to the decrease in or change from biaxin, then it would seem that she still needs it.

 

I think Myco is a pretty common co-infection for Lyme. I am not the most versed on that here, but wonder if you have run the Igenex panel for her? That might explain why the biaxin seems to not be erradicating the Myco. It might be helpful to have this information if you are thinking about IVIG or prednisone to help the situation.

 

Another question would be if there is a proph dose of the Biaxin that you could try slowing lowering down to, once she is back to 100%, rather than switching?

 

I was so glad to hear your successes, and know this is so hard. You know what is working now, so hopefully this will give your doctor some clues about what to try next.

[tpotter]

I never found taking a prophalactic abx twice a week did anything for my ds (we tried repeatedly.) He always deteriorated. He really needed daily (we changed drs.). Just my opinion.

[wornoutmom]

we've done a 14 day course, a 26 day course and now up to 14 days again. We are in very much the same position you are with this. While I can't claim any where near the 99.9% better, I can say that since starting the 2nd course of Biaxin ds has only has one day of "exorcist" episodes in 2 months, and it occurred right as he was feeling sick again. 2 weeks ago my son had antoher sinus infection and went crazy on zithro for 2 days. As soon as we switched it to the Biaxin he felt better within hours and has made steady improvement since . I have an email in to Dr T asking about the long term side effects of Biaxin vs IVIG but haven't gotten a response yet. I believe that developing C.Dificile is the main concern regarding long-term use, and I believe this is the only one of the abx that has that listed as a side effect (perusing the PPR books in my drs. office the other day...).

 

Meg's Mom: how would lyme keep the myco from getting eradicated? I guess I've just been operating under the assumption that myco p can just be extremely hard to eradicate, and like Sammy's strep, may need to be continually treated for years?

[coco]

I am so sorry to hear of this deterioration. It is heartbreaking. My dd has been on Biaxin for a little more than a month now and is doing well, not 100%, but steady improvements. I spoke with Dr. B about the dosage and the length of time it was safe to be on it and he said that it was no problem to be on it for as long as you'd be on azithro, augmentin, etc. She is on 1 tsp in am and 1 tsp pm, she weighs 63 lbs. I would return to the Biaxin and see if you can get her back. Dr B thought the Biaxin was really helping the Lymes, and Dr. T prescribed it specifically for the Myco. Frankly, I don't know which it's helping more, I just want it to HELP! Here is a copy of a post from a week or so ago on our experience with Biaxin and coinfections:

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I have been meaning to post on this but you know how it is, trying something new, holding your breath to see if it works, gets worse, jinxing...

 

My daughter had her first high dose with Dr K last August. We went to him because he was the doctor who had treated the most children. Simultaneously we consulted with Dr. B to have a local immunologist on board to follow Dr. K's protocol, advise and guide us on immuno issues, etc. My daughter was one of his first pandas patients. He was helpful and committed to recovering her. With that said we continued on with monthly low-dose ivig to help her SAID. After 4 months she looked much better "on paper" but behaviorally she was stuck. Never getting better and even slipping further back with each infusion. Dr. K advised us to stop doing the monthly low-dose, as it simply stirs the antibodies and you are perpetuating the pandas symptoms. In our case this was true. In February she had another 1.5 dose. The next 4 weeks were horrid. Week 5 the horrid began to level off somewhat, week 6 better still, but by week 8 she was bad again, not as bad as the first 4 weeks but we felt it was not working for her. After all I had been reading on this forum about co-infections impeding ivig success we then saw Dr. Charles Ray Jones, pediatric Lyme's specialist, who ran a ton of tests on her that had never been run before. She came back with rock-bottom low normal thyroid, strong possibility of Lymes, and past mycoplasma. Her IGG was 5.00 (range >5.00 H, <.90 normal) and IGM 474, with <770 normal range.

 

Dr Jones wanted to treat the possible Lymes with Minocycline for 30 days. Dr. B agreed. Dr. K in Europe. They did not feel that the mycoplasma was a big deal, just a past infection. We consulted with Dr. T. He absolutely said to treat the mycoplasma and prescribed Biaxin for 30 days. Four good doctors. Two confused parents. We opted to do Biaxin, not minocycline. On day 9 of Biaxin a girl who was so riddled with OCD questioning/statement rituals for much of the day had a perfect day. And day 10 was almost as perfect, and 11 and 12. Now we have some blips but they are shorter and less intense. We strongly feel that it was the Biaxin that pushed her through this and maybe treating this will help her healing take hold. She cannot be on this forever, as Dr. K later consulted, and we realize that. And we are past the purity of the theory of "if you try too many things at once you won't know what works" stage. We just want something to work and stay working. Now maybe, just maybe, the ivig can do what it is supposed to do with greater ease. We shall see.

[sf_mom]

Since mycoplasma is a high co-infection with Lyme and intercellular.... and your daughter is also responding to Biaxin. I would contact a local Lyme literate Dr. through ILADs to assist with antibiotic treatment as they are very versed in dealing with this particular bacteria and multiple long term use of antibiotics for guidance. They are also very versed at supporting gut issues while treating with antibiotics.

 

Mycoplasma

 

Because Mycoplasma is an intracellular organism, it’s difficult to test for, but many of my patients have it. Persistent arthritis, especially in one joint that is really swollen, or a rheumatoid arthritis presentation indicate the possible presence of Mycoplasma. In children, major psychiatric problems may also indicate that the infection is present.

 

I've attached the first chapter from our local Lyme Dr.'s book..... its very insightful.

 

 

http://www.lymebook.com/steven-harris

[simplygina]

I have not posted here in a while because my dd was 99.999% cured while on Biaxin. We did a total of 60 days worth. We've been off of it now for 3 weeks and she is deteriorating daily. Dr. T has her on a prophylactic dose of Zith (1/2 tab twice a week) plus one Advil a day. I do not see that helping at all. I feel like the only thing to get her back to what we saw the past 60 days is to go back on the Biaxin again. Has anyone been on this stuff longer than 60 days??

 

We're in the same boat exactly. DS started taking Biaxin 500 mg twice a day at the end of February. So we've been on it more like 90 days. We've seen a huge difference, HUGE. Not 99.99%, but like 90%. But I would say his overall mood & coping ability has been 99%. Soooo much easier to live with!

 

We have tried twice now to bring the dose down & within 4 days things were really bad again. We tried the every other day with ibuprofen as well. Didn't work. First the mood went. Inflexible, snappy, & just not happy. Then the OCD got worse. He's back to touching things even ALL THE TIME again. And the tics getting worse as well. This week we tried just skipping one dose of 4 (am, pm, am, skip) & things are a little better, but not as great as before. So I'm going back to the regular dose today.

 

So far DS has had zero gut problems beyond feeling a little tummy ache the first day he took it. I give him a probiotic with 40 billions cells every day.

 

In Saving Sammy, every time they tried to bring the dose of Augmentin XR down, Sammy would get worse. They ended up keeping him on the high dose for 3 years before they were able to slowly bring it down. Not that the doctor wanted to or planned to keep him on the high dose that long. She did try to bring him down several times, but realized that for some reason he needed to stay on the high dose. Beth gave him culturelle to keep his gut healthy. I realize that Augmentin & Biaxin are in different drug families, but wouldn't the risks be about the same? The worry being that you are damaging the gut? If the child is soooo much better on the high dose, and declines RAPIDLY when the dose is brought down, I think it indicates that they still need to be on it.

 

I'm thinking that is what needs to happen for my son. I don't want to cause problems for him down the line, but I don't want to go backwards either. My sister took a high dose of e-myacin thru her teen years for acne & has major gut problems now, though the doctors have never said it was the abx that caused the gut problems. But that was before probiotics.

 

IVIG really isn't an option for us cost wise, so right now all my hopes are really that we can replicate Sammy's success with high-dose abx.

 

I'd love to hear others thoughts on this because I feel a little stuck right now. He NEEDS this abx, but I'm scared to cause problems down the line. But I don't want fear to dictate my decision. I want to base it on facts & what works for my child.

[kcdc3]

He NEEDS this abx, but I'm scared to cause problems down the line. But I don't want fear to dictate my decision. I want to base it on facts & what works for my child.

 

Simplygina: My sentiments exactly. My dd NEEDS the Biaxin, but that is exactly what scares me - what am I doing to her in the long run? But then again, what am I doing to her by not treating? Dr. T says that he thinks she can go another round. We did test for c-diff and it was negative. Wonder if we need to do any liver function tests or anything else of that nature. In my opinion, Biaxin has been a MIRACLE drug. We suffered for 4 years before finding it. There is absolutely no denying that it works and works well.