I feel somewhat similar - I cannot take abx anymore. It does not feel like a herx should and I guess this is proof that is messing with adh. Are you following the Shoemaker protocol now? I’m really hoping VIP will fix things. I have to believe I’m on the right path. I don’t necessarily know for sure if the cause was mold though. Shoemaker keeps expanding his list of things that can cause CIRS.
Did you test adh or vip? I can’t recall. I think next I’m doing losartan to get tgf beta down. You may want to retest marcons. When they tested did they numb you and go in all the way? I think it’s like 4 inches. I have turbinites or something in there that they have to maneuver over. The nurse tried 3 times and it burned bad and my nose started to bleed. The doctor is the only one who can do it successfully on me.
I'm not doing the Shoemaker protocol. The doctor I initially saw, who diagnosed me with CIRS, used a modified Shoemaker protocol. She initially put me on liposomal glutathione and EPA/DHA for 30 days. Then she put me on cholestyramine. She told me to start with 1/4 dose one time a day and slowly work up. I worked up too much too fast and got horribly worse. I thought I was going to die. She finally told me to stop after 11 days. What followed was about
5 more months of spinning in circles with this doctor and getting nowhere except a positive DNA Connexions test for borrelia and ehrlichia, which I felt was the key for me and the initial cause of my illness and chronic symptoms. I felt the mold was secondary.
I did test adh and VIP when initially diagnosed with CIRS. My VIP was 31.8 but MSH was low at 19 and dropped much lower later. I just looked at those labs and ADH was <.8. Osmololity was in the lab normal range at 279. I don't remember the doctor addressing that specifically. She just kept talking like, oh you just take some cholestyramine and la-te-da, everything will be normal again. She was overly positive and optimistic. Maybe she just didn't want to scare me, but I knew I was in for a much harder picture than she was painting.
As for the MARCONS test, I don't remember it hurting any worse than the ENT. I've been poked and jabbed by ENT's since infancy, so I was accustomed to all that. However, the Lyme doctor I consulted with most recently questioned my negative MARCONS result and said they may not have gone deep enough. I may test again, but if it's positive then I'll be faced with dilemma of whether or not to take the drugs to treat it. I'm afraid of the drugs and not 100% sure if it needs to be specifically treated. It's such a tough call with all this stuff. I just seem to be so sensitive to everything.
I really hope the VIP will help you. From what I gather, some swear by it while others have not been helped so much or relapsed after going off it. You absolutely have to be clear of current mold exposure to be successful with it. Do you have one of the multi susceptible genes?