I get emails like this a lot. I thought his questions and my answer could be useful.
I'm a former who lives in .
I will keep this brief. My health has been declining for 4 years. Problems with digestive system, nervous system, lungs and sinuses. Doctors were unable to find the cause. Recently, a testing company discovered mold growth behind the walls of my home office where I've worked for the past six years. The office had severe water intrusion problems during this time.
I've since moved out and have disposed of just about all of my personal belongings. What's left is sealed and in storage. Unfortunately, I'm unable to be near it at this time.
I went to Dr. Shoemaker for diagnosis and treatment. All tests verified mold illness: double genotype (not the dreaded, thank goodness), MSH of 8, VIP of 10, C4a over 10,000, etc.
I've been on the cholestyramine for 7 months. Some problems have improved such as ADD, confusion, leg and foot cramping and twitching and severe burning in my spine. - however, I'm still experiencing dehydration, fatigue, depression, brain fog ad severe burning sensation in my neck and head. It's miserable and I'm unable to work. I've lost everything - health, finances and property. Shoemaker will not give me Actos or VIP replacement because my biomarkers have not improved in the 9 months he's been treating me. In fact, my c4a has doubled from 5,000. to 10,000. I need help.
I'm renting a room in a house. All vents have heppa filters in them and I have a large heppa air cleaner in my room. I IRMI tested the house though I spend 95% of my time in the sealed room. The results were 5.28. Not sure what that means. Is this still too high?
I can't live like this any more. Can you recommend any other doctors or treatments. And most importantly, can you tell me what companies are researching MSH replacement and possibly how close they are to doing human studies?
I'm feeling like it may be my only hope of recovering from this. I want my life back.
Thanks for your time.
An ERMI of 5.2 is very high actually and means you are still begin exposed to mold.
I know this is a very discouraging thing you have been going through for a long time but you can get well. As you know, while I love Shoemaker's research I don't have much respect for the way he treats, and fails to treat patients.
What is your situation? You say your finances have been drained but do you have some money to see a new doc or buy meds from overseas even if you cannot find a good doc to work with?
Actos, Losartan, a good antidepressant, anti-anxiety med, ADD med, hormone replacement would all help you manage your illness. But these are not cheap.
VIP would not help you much IMO. I have never talked to a single person on VIP that it helped. In fact, in most cases it caused markers to ALL be worse.
aMSH appears to be a long way off. CLinuvel in Aus is doing trials on it but for conditions not for inflammation etc. It is unclear when they will get approval, and whether it would benefit us. So I simply assume it won't be a help and focus on things I can do.
Regarding C4a, I am not at all sure it means a lot. There is actually extremely little research about it from anyone other than Shoe,. It appears to be a marker that moves around a lot for no apparent reason, and often does not relate to symptoms at all though Shoe claims it does. There is only one lab that tests for it and it is a very sketchy lab in my opinion. I think TGFb1 is a better marker with tons of research about it. This is also a marker where commercial labs are not yet testing for it. So I am not even sure it can be tracked effectively. But at least it is being widely researched and the what it does in the body is far more understood, and the things that can control it are far more understood.
I personally have experienced GREAT relief in bringing it down to normal levels.