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MYCOPLASMA - how have you treated


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We have twin girls that are 14 that have just started on Biaxin recently. They were found to have high levels of mycoplasma and both presented differently. Our one twin started with symptoms 2 years ago with anger, depression, anxiety and a few months later, OCD. Then the following spring as she was going through an intensive CBT program, her twin got sick with a high fever, sore throat, and cough. During this sickness she had obsessive thoughts. I figured she just had a high fever and it would go away. Well, it never did. The obsessive thoughts became so intense this spring that she has not wanted to live. I learned of PANDAS and her onset was so clear with the illness. We finally did the cunningham panel on her this summer and it came back with higher Cam Kinase and Antitubulin. It was then that we started doing more in depth bloodwork on both girls and found mycoplasma. Our one daughter that had just he obsessive thoughts is doing so much better on antibiotics but still those thoughts are there. She is all excited when her mind is clear and relaxed and then later in the day, the thoughts are back. It wears her out. Her sister on the other hand who had all the anger and anxiety that went through extensive CBT that helped but left her withdrawn finally opened up once she found out she had high mycoplasma too. She said for the past several months she hears voices or sees movement around her. She did not ever tell us this before. Now on biaxin, the number of times she hears or see things is greatly reduced. I know this is a long road ahead of us but I would like to hear from others about their treatment with mycoplasma. Have you used Bruhners book or other herbal remedies, naturopathic doctors? What has helped?

 

I also want to say that the daughter that presented with all the anger, anxiety, ocd and sometimes rages, was helped with intensive CBT and some SSRI's. Had it not been for her twin sister getting this, I am not sure we would have ever tested her. I knew that things started to happen to her in July before 6th grade and it escalated from there. At the time I knew nothing about PANDAS but when I did learn about it over a year later, I didn't recall her being sick and because she was so much better (at least we felt she was) we would have figured that this is who she is now. I say this to let others know that things can settle down (I did find a research paper showing how CBT can help in PANDAS children, although I do think it is rare) but your child can still be sick. This is such a devastating illness and it takes the life out of you and your children. We are so thankful to know what we are dealing with.

 

 

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Tis the season for mycoplasma unfortunately. Our homeopath has given us drops for mycoplasma, plus drainage drops to clear it out of the kids systems, magic. We do a lot initially and then just go on maintenance until the late spring.

 

I think that once you get it under control herbs like berberine really help.

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Hi

I have twins too, boys, they're 9.....

One has pans (the other we recently found out had a past mycoplasma infection, but it never presented)....

I discover pans through an extensive Google search in the spring time when the ocd was out of control and CBT wasn't helping at all....

We started going to a pans clinic mid May- he has mostly been treated with steroid infusions, 2 ivigs, and takes naproxen daily as well as antibiotic cefdinir-

Mycoplasma is very hard to get rid of!

Are your twins being seen by a pans/pandas clinic?

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Thank you for the posts! Yes, we are seeing a PANDAS/PANS doctor and we are on week 3 of Biaxin. We did a 5 day steroid burst at the beginning. They take Fruit Anthocyanins and we just started enhansa curcumin. We started to see some results on day 6. By day 10 our primarily OCD daughter started to takes a shower, put pj's on and brush her teeth before bed, and she had desire to live! But this last week, her evenings are harder. Her days are up and down. She will say, "I think these meds are working, I can take in my surroundings", etc. Then a little later, she will fall apart and be upset. After reading your post, it makes me think the steroids gave the little extra that we need? With her twin, she is different. She is starting meds as a girl that is withdrawn and can sleep a lot. This girl that loved to be by other kids does not interact as much. Without going into her history, she did not tell us things that have been going on in her head. She has been obsessing over things, hearing some voices and seeings movements that scare her. She has cried 2x in the last week (which I was thrilled to see some emotion!) and said that instead of hearing voices 10x a day, it is only 2 or 3 and she does not see movements as much. We never knew this was going on. Two years ago right now, she was a wreck with anger, anxiety, some OCD, to the point where she could not go into the dance studio, into a clinic or go to school many days. We ended with a girl that is better on the outside, but still not well on the inside. My plan is to see a naturopathic doctor that specializes in PANS/PANDAS/Lyme, immune, and digestive issues in the next week or so. As for IVIG's, our primarily OCD daughter does not qualify because she has such low IGA's.

 

How are your children doing now? How is the OCD? What do you think helped the most? Can you tell me what a steroid infusion is? It would be nice to talk sometime.

Thanks for the replies.

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Mycoplasma is a common co-infection to Lyme. Mycoplasma is written about widely in Lyme world so I thought I'd include a great article from that perspective. Combination antibiotics are often used to treat and the article explains why. LLMDs are very versed at treating. It is important to watch direction of titers while treating.

 

We have 8 year old boy/girl twins.

 

 

http://www.immed.org/infectious%20disease%20reports/infectdiseasereport06.11.09update/pha_nicolson_0709_v4.07.pdf

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@sf_mom: are you in SF? If so where are your twins treated?

@ lighthouse- have seen the biggest improvement from the ivig! We don't have the exorcist like rages since ivig- those are gone!! We still have mild rage, ocd, and anxiety-

My son hasn't been able to attend school, we are 2.5 weeks post ivig and my son has agreed to go to school tomorrow for tutoring! This is a very big step for us!

Recently someone told me ivig is more likely to be covered by insurance if code is ocd, not pans- interesting;)

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  • 5 months later...

Has anyone had experience with minocycline for myco p? When our journey began and we started the abx routine, my ds 14 was on azith. We saw results pretty quick and saw the OCD stuff ramp down significantly. We stayed on azith for couple of months and just kept on hand for flare ups (which we did have a couple of big ones). For the last few months, we have been stuck on scrupulosity ocd and we just started a new abx, biaxin, to try and bring down this flare. After one month..it has not done too much. I don't know if we could go back to azith since we had been off it for awhile or if we should request mino. Any feedback appreciated.

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  • 2 weeks later...

Well, we have gotten our Myco P igg numbers down from 2500 range in 2/14 to most recently 860. A good portion of that time was off of antibiotics at that. Our doctor is no longer too concerned about the myco p and apparently it was able to to come down significantly without ABX protocol. My ds (14) has mostly just had the OCD thing going on and the flares have always resulted in a major uptick in intrusive thoughts. For the past couple of months, he has been stuck on scrupulosity OCD....so we decided to go to our stand-by abx (azith) and , unlike other flares, they seemed to have no effect. Doctor switched us to biaxin...still nothing at all (maybe even worse) even after 3-4 weeks. Went back to azith and nothing. I would like to come off altogether and see how we do on the inositol and other supplements we use. Anyone come off abx when they see no improvement?

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