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Pots And Diagnosis Of Encephalitis


looneymom
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We saw a good immunologist yesterday and had a really good visit about Tyler. His name is Dr. Rao and he does see adult patients. He is located in Plano, Texas and is board certified in allergy and immunology. He was very very kind and and cannot belive what we have been through. Tyler does have the PANDAS antibodies at a very high level. My husband and were showen the new test results. These antibodies can actully be caused by more than one type of bacteria or a couple different virus. Tyler will not be diagnosied with PANDAS since this is a progressive type. The doctor is supects that mycroplasma is the problem. It can hid in the cell and when Tyler caught the flu last January, his body was unable to fight everything that was running loose. So whenever Tyler gets sick his body is not able to fight it off. So now we have to find a way to get everything shut down.

Dr. Rao is started him on Azithromycin 250mg for three months.This is the first line of treatment to try and get rid of these antibodies. If this does not work then we will have to stat looking at some other IV therapies. We will also be giving Tyler B12 shots 2x a week to help with energy levels. He also wants us to start Tyler on these supplements: 500mg of Acetyl-L-Carnitine, 600mg N-Acetyl Cysteine, 100 mg of Co Enzyme Q10. Has anyone taken these supplements? How do they effect you and your blood pressure? Tyler has low blood pressure but Dr. Rao said these would help increase his energy level. He understands the fatigue issue quit well and knows this is a major problem. He does know that Tyler has POTS and said this is his first patient that he has had with this combination. Dr. Rao has advised us not to start the new supplements until I talk to our cardiologist. This doctor seems to be willing to work with our cardiologist on a treatment plan.

Tyler will also be having some more testing done. He is being rechecked for some virus and Lyme. Dr. Rao is concerned about the amino acid pathways. Since Tyler has always been able to sit up and not lose this funtion, he is thinking something may be blocking one of these pathways. So more testing is being done in this area.

I did ask about the severe scalp pain. He said this was part of the condition and was surprised that Tyler was not get much relief with the Zoloft. Zoloft is used to treat this condition and normally helps. He will consult with some other doctors and see if there is anything else that we could try.

Dr. Rao was impressed by the GNC amino acid shake and the other supplements that we were already giving Tyler. Tyler has also been on the Symbiotics Colostrum Plus Capsules for about 3 weeks. It helps some with the energy levels and the doctor wants us to continue it for right now. He thinks the B 12 shots will probably help more. I will try and post what supplemets Tyler is on if I can figure out how to do this. I have noticed that many of you have figured out how to do this under your signatures. Hope everyone is having a good day.

Rachel

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Sounds like a great appt. I'm interested in the mycoplasma avenue...is that something lab work will show or more of a hunch? Also, he mentions amino acids and testing. Is there anything in particular he's looking for? I think I have an amino acid issue, but have never figured out what kind of doctor addresses that. Is that his specialty or his "thing"? Sorry for the questions but these are the kind of reports from people I love to hear about, when a doctor is really thinking through all this.

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Rachel- Very exciting to have another course of action open to you to pursue. Always hopeful!

To put info in your "signature" (like the supplements etc), click on your user name in the upper right hand corner, click on my settings and then click on signature on the left hand side.

I've been advised to use the acetyl L carnitine and the CoQ 10. Have tolerated it ok in the past. Haven't used the other one but I think I remember it being discussed in the past so you may be able to find prior discussions about it.

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Hi Rachel,

I have done B12 shots. I didn't gain anything from them although I know many people do. I read somewhere (I wish I could tell you where) that often people deficient in B12 are also deficient in most of the B vitamins but docs don't generally test for the others. So I started taking a B complex and could definitely feel that the quality of my waking hours was better. I didn't fix my hypersomnia but I was able to do more when I was awake. I then added 200 mg of CoQ10 and that again gave me a little more quality of life during my waking hours. Neither has truly reduced my need for more sleep than a healthy person but at least I can do more with my awake time. I can definitely feel it if I slack off taking them for a few days. My energy levels tank. I found a supplement that has a b complex and the CoQ10 as well as a few other things like vit c and a little d too all in one at a very reasonable price. It is also free of all common allergens and sourced and made in the USA. If you want the info on it PM me. I haven't had any adverse reactions from any of it...as individual supps or in the combo form.

Glad you had a good visit with this doc.

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I am so happy for you and your son. I hope this is the road of recovery for him. I get B12 shots once a month, I started once a week. And even though I still have many problems, I will say my energy level is really improved and I feel like it makes me feel better. If I am late for mine I feel fatigued and I think have more electrical zaps than without.

Wishing you and your son the best and Happy Holidays.

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