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My ds doctor's appointment went very well this last Tuesday. Our cardiologist is going to start a more aggressive treatment plan. Testing from the Pandas study has indicated some heart antibodies are present. However, my son has not been diagnosied with PANS/PANDAS because of how his illness progressed. He has been put into another study at OU for POTS patients. This study is also looking at specific heart antibodies and receptors. The cardiologist has given my son another diagnosis and his POTS is the secondary diagnosis. This new diagnosis is a tongue twister it starts out as autoimmune anti-neuroantibodies ______ _______ ________ _________. I will be getting a letter for my son's school and it will be written down. So I will be able to tell you the diagnosis name eventully. Basically our doctor thinks the Mycoplasma has caused the brain antibodies.

 

My son will be going for labs on Monday to see if Mycoplasma levels are going down or staying the same. He is also checking magnesium, iron, and other electorlite levels. The only improvement we tell is that the antibiotic is keeping his blood pressures up. Which is huge, since this stuff is affecting his heart and blood pressure. If his mycolplasma levels are not going down, my son will be change to another antibodic. Doxycline was discussed as a possibility. My son will be having lab work about every 3 months to check for the levels. I am really glad that our cardiologist is going to do the treatment because of heart and blood pressue problems. The cardiologist is also ok with us trying Burhner's herbs for inflammation. Since other medications have not helped in the past. However, we must start slow and he will moniter my son with EKGs after he has been on a new herb for one week.

 

Our doctor also wants to start my ds on an immune supressing medication. IVIG was discussed but he is afraid it will make my son's current symptom's worse ( headache, scalp pain, and vocal tics). He really does not want to make these symptoms worse and wants to leave IVIG as last resort. He is trying to find something that is antiflammatory that will not increase these symptoms. Any suggestions on what to look at? I know our doctor is collaborating with other doctors. However, I wondered if anyone had found an immune supressing medication that kept these other bad symptoms from becoming worse?

 

Last but not least, for those that are treating the Mycoplasma, Have you gotten rid of it yet? If so, How? Feel free to pm. I have went back and read several old post and have saved them under my favorites. It sounds lke this is going to be a very long haul. I'm hoping with the herbs and antibiotics that we can speed up this healing process. I am also waiting on my son's 23 and me results. I have also save all the old post and will share the results. Overall, we had a really good doctor's appointment and I finally feel like we are headed in the right direction for treatment.

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In addition to any antibiotics you may be using in the future to treat Myco, according to Stephen Buhner, the symptoms of mycoplasma can be very much the result of nutritional deficiencies caused by the parasitic tendancies of those organisms. Make sure you are using optimum nutrition as an adjunct:

 

https://www.facebook.com/Dr.Terry.Wahls

 

http://perfecthealthdiet.com/

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I think I would want Lyme ruled out before starting an immune suppressant. Not a doctor here. I'm new here so don't know your son's story.

My son is 18 with POTS, PANS and Lyme with myco, babs and Bart. He started IVIG yesterday. He was able to get off of all POTS meds with Lyme treatment.

K

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What is POTS? Figuring it has to do with heart and I am curious since my non-PANDAS son,who has dyslexia and Irlen was told last month he has a heart Arrythmia.

 

Rachel in regards to Myco my PANDAS DS is in normal range now. It finally budged after a year on prophylactic abx when I got treatment myself. Make sure all family members are checked.

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POTS stands for Postural Orthostatic Tachycradia Syndrome. It does have to do with the heart rate and blood pressure. It can be brought on by several different things. My son had walking p, ten months before he was diagnoised with POTS. After the walking p., his symptoms kept progressing. My son got so bad that we had to take him to the hospital for a 10 day stay. Many test were ran and he was diagnosied with POTS after a positive Tilt Table Test. Here is a good reference article about POTS. It can explain it much better than I can put it into words. My son's POTS has been caused by a Mycoplasma P. and Mycoplasma P. can cause brain antibodies.

 

http://www.dysautonomiainternational.org/page.php?ID=30

Edited by rachel
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