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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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calm down dude.Considering you've researched the protocol and COX2, may I ask why YOU have yet to try it?
If it works, it would achieve remission and I'm sure you'd be thrilled with that result.
calm down dude.
I have never heard of pulsing VALTREX...Pulsing Valtrex can result in you developing an antiviral resistant form. Not a good idea for you or anyone exposed to you.
This is very interesting to me as I have terrible vision problems since getting ME. I'd never heard of Uthoff either, this would contra -indicate infra red saunas which I've been advised to do by several doctors.
Please keep us informed about how you get on with Dr Klimas - we can all learn from what the top docs are doing, (even if we can't access it here in the UK) I never knew a virus could get into the eyeball - damn them.
My eyes have been a nightmare... It first started in 2011 and she found something on an eyetest not closing the circle... can't explain more... then the vision kept going. Then Nov 2012 I suffered a migraine and my eye was fading up till that point. I was admitted for one week and they found nothing. Jan 2013 they found RETOBULBAR OPTIC NEURITIS, a central scotoma, severe vision loss, some color loss but most but not all returned, and herpes scars on my cornea though I NEVER HAD HERPES show up. My titers for HHV-3 Varicella was off the list meaning I had shingles without a visual breakout... all said and done the diagnosis was I had suffered another stroke in that eye while my heart was waiting for ablation. Shingles got in and did damage. I was followed in two countries fit MS but both countries after these two years say no MS. And when I get my notes from Klimas... she wants an EYE BALL BIOSPY!!!!!!!!!!!!!!!!!!!!! YIKES!!!!!!!!!!!!! If I undrestand her...she thinks maybe a virus got in my eye or optic nerve... CRAZYYYY...
I was on Valtrex which worked but since the CVID diagnosis, Klimas is changing my strategy. Before it was VALTREX 2 GRAMS, LDN 4.5 MG, Pulsing IMUNOVIR... which all worked damn well... but then I was off a year and now we are doing LDN 4.5 mg, Pulsing Imunovir, Fludrocortisone, and we are waiting for IV IGG ...@lartista
what you've gone through sounds like a nightmare, so sorry.
I suppose a/virals are the only treatment then?
@m1she11e
can you remember in which thread you posted what the acyclovir dose was?
I agree about the facial issues, a little bit of cold wind on my face is enough to trigger a Bell's Palsy type episode.