CFS Specialist Visit

So here is my summary. She told me to be patient and that I will get better. Patience HA!

OI: She asked me to do the florinef in half a pill at a time intead of all at once, I started inmidiately and it makes a big difference, she also told me to do an extra dose when I need to be standing longer. I was traveling and thoguht I wasn't going to make it, took half pill florinef as I felt the crash coming and violá, I was back being good and in business!!!

Lymph node pain: Active infection, she says for sure I have something active and that she just had to find what it was, then once we treat it, it will get resolved. Take advil in the mean while.

Pain, Burning and Citokine storm like Feeling: She started me on LDN 1.5 mg. I will start once I come back from trip. She said she didn't start me earlier because experience has toguht her that with CFS you have to do one thing at a time and start SLOW.

Viruses reactivations. Small bumps in mouth and one in hand: She saw it and said that coaxsakie was reactivated. She will retest again and if viral titters have not gone down, she will start me on Famvir (I think because HHAV6). I AM SO EXITED!! Antivirals finally!!!!
Note: The bump in hand (just have one, dry and just a little ball bearly notecible, it does not itch, is So small that I thoguht it was nothing. Now it makes sense.

Others: Lower the imunovir to 3 a week then 4 a week. She thinks all that acidity issues is from it. See if I feel better in the lower dosis and I need to test for uric acid every 3 months (She thoguht My GP was doing that!!).

My sister went with me so it was interesting to get my family more involved, she took the time to explain what was going on to her and she explained that this is a inmune condition where the CD56 (??) cells don't work properly.

Overall this was a Success visit and I got LDN and Antivirals (pending test results). I have had a few good days with the change of the florinef even thoguh I have been traveling!!!

Comments

Hi 7, it sounds like you are getting proper care, at last. It must be a huge relief just to have a doc who is actually trying something, instead of the usual, "CDC says there's nothing to be done."

We're all cheering you on!
 

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