Mold options

[loayachil]

Hello all,

(Again). I was recently went to a support group and after mentioning that I have major vision issues (I can see everything, but I cannot process it unless I strain, once I strain then although I can focus I can only focus on a drop at a time) a few people mentioned that maybe my initial cause was mold toxin. This makes sense as I have a terrible time with mold, with severe allergies and exasperation to many of my symptoms (breathing/sleeping/headaches).

I seem to come to the realization (correct or not) that every (or many) approaches seem to help 5%-10% of us CFS'ers. Whether it is because the body systematically shuts down and we all have different initial systems that shut down (and need to find which one), or the system has shut and many treatments jump shot our systems (and our bodies all respond to different jumpstarts) or because CFS is an umbrella of systematic illnesses. Whatever. I also think that many treatments help us 5%-10%.

John66 mentioned Dr. Shoemaker. I have asked around and he does seem to be good in his field, but narrow-minded in only his field. He will not acknowledge others. I am thinking of going down, although to an extent I would rather not, as it is a travel, and I have just moved from maryland (and from the one insurance that he covers). I therefore am thinking of asking my primary to run similar tests and if they are positive to either take the medication he recommends or going down.

My questions are as follows:

1. Does that make sense. Should I ask my primary to run initial mold tests and then possibly ask him to deal with it, or should I go directly to the expert?
2. If there are positives should I ask my primary to start me off on the main medications or go to Dr. Shoemaker?
3. Most important, does anyone know what tests there are for mold, and what tests Dr. Shoemaker runs? (I tried his visual test and passed. It's not that I cannot see, I cannot process?) Did anyone go to him and have the list of tests?
4. And does anyone know his protocol. He mentions that he starts with cholestyramine, but curious in a generic term what else. (No I'm not going to take it without a doctor, but unfortunately we all need to tell our gp's what's out there.)

Thanks yall for allowing me to ask you my questions and for being my collective doctor.

Love yall.
Lo

 

[Rosanne]

I would check out FB`s mold help pages (groups). There are hundreds of folks who are ill from mold. I too unforunately fall into this catagory. You can also look for someone in your area or get a referal from one of the mold groups. Yahoo also has a sick building group that is very helpful. There are many local doctors now that have know Dr. Shoemakers protocol.
I find it interesting that you passed his visual test. Good luck, its a long journey but you can get well if you first remove yourself from the mold and then start the protocol. Btw, there are other doctors who follow different protocols but Dr. Shoemakers seems to be heads above the others. Too bad he isn`t open minded enough to incorporate other smart
scientists ideas along with his own.

R~

 

[loayachil]

Thank you very much Rosanne,
I appreciate it.

What does FB stand for? (And do you know of any mold doctors in the NJ/NY region that are good?)

Thanks,
Lo

 

[*GG*]

I think FB is referring to Facebook. There are lots of groups on that site.

GG

 

[maryb]

Not wanting to start another thread so....
I'm like a bloodhound when it comes to smells particularly mould - and well it just bowls me out of the action.
Can anyone explain briefly what happens when the mould spores/smells hit your nose?
What about when you can't smell it for a while, start feeling light-headed and then get a faint smell which gives you the clue as to what ails you?
Anyone really knowledgeable about the process?

 

[sianrecovery]

I did the genotype testing shoemaker writes about because I know my symptoms become worse with mold exposure. I've proven this to myself many times. I would far rather it wasnt an element of my illness, because avoiding mold in the UK is an absolute bugger. My genotype is one of the multisuspectible ones. I read Shoemaker's books, and definitely think he'd on to something. Having said that, I have not met or communicated with any MEers who have been 'cured' by him.
I havent taken the drugs he recommends, but I have seen improvements by getting an environmental survery done of my home and reducing its toxicity.
As to why molds make us ill - my thoughts - our sense of smell may increased as a result of autonomic overarousal characteristic of ME - also perhaps because our bodies are hyper alert to something they find hard to process - that in itself may set off an immune response producing cytokines - and moldies may struggle to eliminate any toxins normal people can rid themself of because of genetic deficits etc.
Scott Forsgreen's betterhealthguy website was helpful to me.