Starting treatment

[lfran]

Hi all.

 

Quick Igenex recap for DS9.

IGM: 31 and 41 were IND, 58 +

IGG: 41 ++, 58 +

 

As the first step on our journey, I located an MD in our HMO who was recommended for Lyme. He hasn't seen tons, but he has seen more than anyone else. Based on constellation of symptoms, Igenex results, and our vacationing habits, he diagnosed Lyme and started DS9 on azith 250 mg for 21 days (DS9 is 83 pounds) and then said to check back in. He also ordered TCell panel and CD3+, CD4+ etc. (DS9 is actually remarkably healthy in terms of not getting common illnesses).

 

I know this is not long-term enough treatment -- but it's a start and I plan on moving forward. I asked him about adding Flagyl and he is going to get back to me.

 

Can anyone comment on the dosage and drug choice? And on any literature I can give him re: Flagyl (or anything else!)

 

Since he is about to start the antibiotics, I am also interested in doing the provocation test with Igenex, for my own peace of mind. Also, can anyone weigh in on that (for instance, if I get a negative, I might drive myself crazy)!

 

I do know of a couple of LLMDs outside our HMO that are in our area and I am also looking into that.

[philamom]

When we first received a positive lyme result for our dd9 (60lbs) in July, she was placed on Zith 250mg a day. In Sept, an LLMD added daily Amoxicillin 500mg (2x day) and Tindamax 250mg (2x day) on Sat/Sun. This is when we saw the most notable improvements. Recently, we added Minocin for co-infections - Bartonella and Rocky Mountain Spotted Fever. The zith is a good start, but I think a combination of abx will be needed to eradicate the lyme, especially if it's chronic.

[Suzan]

Hi, my dd9 (who's test results were similar to your ds) will hopefully get her med orders this Friday so I can post then what we will be doing. I hear it will be similar to my protocol, just different dosage.

 

She is already on zithromax so I suspect we will add flagyl 3 days a month, amoxcillin (although I hope to get something else in place of that because dd has not responded to that abx in the past) and anti yeast meds.

 

There are the three stages of lyme that need to be hit to get rid of it and the different abx will hit the different stages.

 

Susan

[lfran]

Thanks, all.

 

So, it sounds like a cyst buster can be started later? Or should I start requesting it be added ASAP?

 

 

Hi, my dd9 (who's test results were similar to your ds) will hopefully get her med orders this Friday so I can post then what we will be doing. I hear it will be similar to my protocol, just different dosage.

 

She is already on zithromax so I suspect we will add flagyl 3 days a month, amoxcillin (although I hope to get something else in place of that because dd has not responded to that abx in the past) and anti yeast meds.

 

There are the three stages of lyme that need to be hit to get rid of it and the different abx will hit the different stages.

 

Susan

[cobbiemommy]

I don't know how long your child has had lyme, but would not start treatment right away with a cyst buster. Would start with Zith/Augmentin combo or even Bicillin LA shots. Add in cyst buster later after you have killed off the bacteria that is just sort of "floating" around in your child's body. Once you open up the cysts the body has a much bigger burden to detox after killing off the bacteria. Also, with Flagyl or Tindamax, make sure you are taking another antibiotic that kills the bacteria that are now floating freely in the body.

Cobbie

[Suzan]

This all reminds me, since my dd9 was already on zithromax for her pandas, our LLMD felt comfortable enough to continue on that treatment until we were ready to start her treatment (2 months). We did this so I could get well into my treatment and be stable to take care of her. Then, as you start other treatments, you build up slowly so you can be sure to withstand the herx reaction. So I agree, you are OK to wait until you see your doc next.

[philamom]

I agree. My dd was on different strengths of Augmentin (Pandas) and 3 fourteen day rounds of Flagyll (GI issues) for 15 months before seeing an LLMD. That's probably why he felt comfortable prescribing Tindamax right away. After examining her, he must of sensed she could handle it.