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After years DS still has high mycoplasma titers. Will PEX fix this? He is not taking ANY antibiotics as they don't give any improvement, but if he has PEX and still has myco after will the bad antibodies come back? I'm starting him on dye free Biaxin today, but know I won't be able to shake it. Ideas and thoughts??

 

Nancy

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  • 2 weeks later...

My daughter (21) started at 15 after a clear case of Mycoplasma pneomoniae.

IGG at infection - 3 months was 65 or so (35 is positive border here)

It kept getting up for years but each time she got IBX, Steroids or IVIG and got better the IGG level clearly went down, not to negative, but clearly lower than before her treatment.

2 years ago she was in real terrible state, and we could not get any IVIG any more.

We decided to start her on Azithromycin 500mg/day

Her IGG then was over 200

In 3 months from Azithromycin it was down 50% and after another 3-4 months it went as low as 39.

She ahs nwo been on Azithromycin 5++mg/daily for almost 2 years. Her current IGG is 47 and she is doing far better than before. Not yet recovered, and I have no idea if she ever will as I cannot even guess what years of neglect and wrong medication have done to her and how effective can Azithromycin be in ehr case without any PEX and IVIG, but I am terribly optimistic! It also lowered her leucocytes, which ran over the top value ever since she started with PITANDS symptoms back to normal.

 

Azithromycin is very effective for those titters.

Try, if you can get a physician to prescribe and follow up on general health, liver and kidney values. Use probiotics and follow MycoP monthly.

The chance is that within some weeks to months you will see lower IGG and far better condition. Remembr to be patient and supportive and make sure your doctor is not the kind who gives up too easily.

 

I know it works.

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I know things like pyroluria have struck a chord with you. In my small, biased study of one kid, we were never going to get him well until we treated this. It was like asking the body to function on 3 spark plugs instead of 4. Now that he has all 4 cylinders firing, he is better than he's been since this started 3 yrs ago. Pex and IVIG, for us, didn't address the root of the problem.

 

Just my opinion, but if you have an active infection, PEX may give you temporary relief, but the body will re-make antibodies/auto-antibodies afterward in order to fight the remaining infection. I know you're under a deadline and feel pressure to act, to not miss a window of opportunity. But until you address the core problem, symptoms are going to return. At least, that was our experience.

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Might as well throw my 2cents in the mix. Forgive me that I can't remember your entire history. My daughter is also positive IgG and IgM for Myco P. The way I understand myco p. is that as the others say it is intracellular, which makes it tricky to treat and also their are different strains so you have to find the right antibiotic for what you are treating. We used Azith for a couple of months and only saw minimal results and then switched to biaxin and saw great results within two weeks. The results have sort of leveled off now so he has added rifampin to the mix because it crosses the blood brain barrier. My daughter has had two IVIG's since June. Over all we have seen improvement but we are still far from where we need to be. Since we are only three weeks out from her last IVIG, it's hard to say whether we will get results from that or not. We have to wait a couple more months before we can recheck her titers.

 

I think it is important to continue to try to treat the myco p. Your physician will need to work with the antibiotics until you find which one is going to work. It may take a combination. I think it is very important to see someone experienced in treating this. Best of luck. Keep us informed.

 

Dedee

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Might as well throw my 2cents in the mix. Forgive me that I can't remember your entire history. My daughter is also positive IgG and IgM for Myco P. The way I understand myco p. is that as the others say it is intracellular, which makes it tricky to treat and also their are different strains so you have to find the right antibiotic for what you are treating. We used Azith for a couple of months and only saw minimal results and then switched to biaxin and saw great results within two weeks. The results have sort of leveled off now so he has added rifampin to the mix because it crosses the blood brain barrier. My daughter has had two IVIG's since June. Over all we have seen improvement but we are still far from where we need to be. Since we are only three weeks out from her last IVIG, it's hard to say whether we will get results from that or not. We have to wait a couple more months before we can recheck her titers.

 

I think it is important to continue to try to treat the myco p. Your physician will need to work with the antibiotics until you find which one is going to work. It may take a combination. I think it is very important to see someone experienced in treating this. Best of luck. Keep us informed.

 

Dedee

Both Azith and Biaxin made him much worse and we tried it for awhile, so I don;t think it's a herx. I'm interested in Rifampin though. From Wiki: "Rifampin may also be used to eliminate a bacteria from your nose and throat that may cause meningitis or other infections, even if you do not have an infection. Rifampin prevents you from spreading this bacteria to other people, but the medication will not treat an infection caused by the bacteria." So it just kills strep or myco? Might be worth looking into.

 

Nancy

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Rifampin was used a long time ago when we treated TB patients. It has made a come back recently with the treatment of chronic lyme patients and chronic mycoplasma. It is almost always used in combination with another antibiotic. As I mentioned we used Zith for a while before switching to Biaxin. Since things leveled off with the biaxin he added the Rifampin. He said if this wasn't helpful we would stop the biaxin and use something else with the rifampin. Didn't mention what the "something else" would be though. Hope you can find something that will be helpful.

 

Dedee

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Dedee - do you see Dr T? He just recommended Biaxin for our DD12. We thought it more of a guess and did not fill the script yet. Also we had to wait 4 weeks till our CBT trip to Dr Storch's clinic for OCD was finished. Did the Biaxin help and what was the OCD bad before you used it? Is anyone else having luck with Biaxin?

 

Nancy - Swedo told us in the NIH Pandas study that titiers do not necessarily come down after med treatment. They are more of an indicator of past exposure. Dr T always looks at the relative change in titers. Are they going up or going down?

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I was diagnosed with MycoP last August when Dr. B. was testing me and my DH to see if we were the "carriers" (he tested for MycoP and strep.) I had been sick for nearly 3 years with horrible asthma, and when it would get bad enough I would do whatever I could to get azith (it was the only thing that worked, even though I wasn't diagnosed.) I highly suspect it was mycoP the whole time. I was IgM and IgG positive (IgM was double the normal amount at 1750!). Everyone in my house was IgG positive, and DH was at the very highest end of normal for IgM.

 

I have been on azith for 1 year now, plus am also being treated for other co-infections of Lyme (so I am on other abx simultaneously.) I see a Lyme specialist, but I also see a Lung specialist (they gave me a "senior" lung specialist, when they found out I was dealing with mycoP.) He found evidence that I probably have scars on my lungs from it...I was afraid of that. It is a very hard infection to treat, but you have to find an abx that works (azith is one of the primary, but I do believe that biaxin that you're using is similar.) I'm a big proponent of PEX and IVIG, but I don't know that it's necessary for mycoP. It just takes a lot of abx (the right ones, because it is an atypical pneumonia), and it takes a long time. Kind of like treating Lyme...where many docs and the CDC say it only takes a month, but we all know that's not always true. Same with mycoP (which, incidentally, can be a co-infection of Lyme.)

 

Good luck with whatever decision you end up making.

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No we don't see Dr. T. We see someone local who has treated PANDAS children and is an LLMD. He is literate on PANDAS and knows all of the "big" names in the PANDAS circle. Of course we also use Dr. M. from Florida. We have seen her for years since realizing this was PANDAS with my first son five years ago. We have only just found this local doctor a few months ago and he is helping with the myco p. Dr. M. is a 13 hour drive from where we live so I am hoping the local physician is going to work out. Time will tell.....

 

Dedee

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