It has been way too long since I added to my blog here. I am sorry I haven't but my interests are elsewhere AND for the most part I feel great! So I don't research as much. I still get lots of hits on the blog and am glad people find the info useful in their recovery from chronic illness. I recently received an email that asked great questions and my answer to it seemed blog worthy. The two emails are long so you have to wade through them. I have changed some things in the email to me just to hide the identity. Hope you learn something useful! I am sorry that Typepad for some reason simply will not take my paragraph breaks in my reply.
Hi Pat,
I was reading your blog last night but couldn't not find any recent entries (past 09'). Are there any? I'm also a patient a Shoemakers (started in ) and have been on the CSM for 2 1/2 weeks. I would totally agree with your remarks on his bedside manner (which doesn't exist). It is most certainly his way or the highway. I have the dreaded genotype 11/3/52B and low msh-6 (I sleep OK, but it's a very non-restorative sleep), low vip-7, and ADH and Osmo are out of sync causing the constant dehydration. My TGF-B1 is slightly elevated @ 3320 but my C4a and C3a are good-as are VEGF and MMP-9. Shoemaker mentioned patients buying MSH and taking it. Are you aware of this or have you had any experience with it?
The CSM was starting to work pretty well but then I went back to drinking a couple cups of coffee per day and today feel most of my symptoms back. Of course I will stop the coffee pronto but I think I would feel a lot better if I could raise my MSH level which Shoemaker said will not happen with my genotype. Guess he doesn't believe in a positive attitude.
I got the ERMI test back on my house and it's at 7.21-not so good. I just moved last Oct and do not want to move again. I've been dealing with these symptoms for years but only recently put it all together. Do you know if infrared saunas help to detox the biotoxins? I wanted to see if you had any personal experience with the infrared saunas.
I exercise as much as possible as I think it can only help. I 'm in pretty good shape. Shoemaker thinks that has helped me otherwise he said I would be worse. Thanks for all the helpful info you have posted and if you have any more recent updates or answers to my questions I would really appreciate any and all help and info. Did you find VIP helpful? I don't know if Shoemaker will perscribe that for me before I get house remediated. All the best...
Dear ________,
No I have not added anything since then to the blog. I basically got tired of writing for it and had other things to do. I have thought about it though so that should count for something! :-)
I am aware that some are taking MSH under the name Melanotan 1 and 2. Not sure which they take. I took Melonotan 1 for awhile a few years back and all I got was very tan. My moles all turned black and my dermatologist had a fit! I wonder if Shoe knows what people are taking and if he thinks it helps? There are a few threads on the Melanotan forum about Shoes stuff but nobody says it helped them.
With you constantly being exposed to mold with a very high
ERMI you definitely are in a tough spot. The number one thing you can do is get away from the mold! Can it be remediated? The other thing is to invest in great air filters. I use the IQAir. Costs $899. I have 3 of them in the house. That would help lower the load! But as long as you are being exposed to the mold it is a serious problem!
I have used Far Infrared Saunas and have one in my house. It is a great detox for lots of things including heavy metals. Not sure if it gets rid of mold toxins though.
Exercise is BIG help for lots of reasons! Good that you are doing that!
The things I do though are some things that Shoe occasionally recommends and some other things I just think help a lot. I take losartan 50mg and pioglitazone 30mg everyday. I am not recommending these as I am not a doctor. I am just telling you what I do. I get them through PharmacyEscrow.com w/o an Rx. They are very potent anti-inflammatories for most of the markers Shoe tracks and a few he doesn't track. Losartan will lower TGFb1. It will lower Blood Pressure a bit and that is a problem as most mold/CFS/FM people have low BP already. Sometimes you can take Licorice Root to raise the BP back to normal. You have to figure out your right dose though so you have to have a BP monitor. Anyone who has low BP ought to do what is needed to get their BP to normal as they will feel better with normal BP.
I believe the most significant thing you can do for BP and many other conditions is to make sure you are making enough cortisol. Most people think cortisol is bad but without enough of it we would die! Many people with chronic illness have low cortisol. It is called hypoadrenal or adrenal insufficiency. On a good day without much stress your adrenals make around 40 mgs. On very stressful days they can make over a 100 mgs. If you don't make enough you will suffer because of it. Here are two good articles on it.
ADrenal insufficiency and
Dr. Doyle. Hypoadrenal is the main reason people with mold illness (and many other illnesses too) have low blood pressure, are fatigued, dizzy, depressed etc. Their body simply does not make enough cortisol. I take low dose hydrocortisone 20-30mg per day in 4 doses which mimics the way the body produces it. I take more if I feel I am coming down with the flu or a cold or something. Or if I am under a lot of stress. Don't be confused, I am NOT talking about prednisone or anything like that. Hydrocortisone is the exact same hormone the body makes. If you are hypoadrenal you will feel a LOT better taking cortisol! We are talking about taking physiological doses NOT pharmacological doses. It is the later which can become very dangerous!
The Hypothalamus in most moldy patients does not work well and the HPA axis simply has lost control of a lot of hormones ala your issues with ADH. I would check ALL your hormones using the
ZRT Labs full kit. If I was low on anything I would supplement it! You basically have to try to compensate for a hormone system that is out of whack, probably permanently. Most mold patients are Hypo everything!
Regarding Losartan and Pioglitazone, both of these have helped me feel better. They removed a ton of soreness when I exercise. Go to PubMed and just do searches on both and you will see all the amazing properties they possess for many systems in the body MAINLY because they STOP much of the inflammation cascade that Shoe talks about.
I also use BCM Curcumin 500mg twice per day. It also is an extremely potent inflammatory. CoQ10 from Life Extension and of course Jigsaw Magnesium and Vitamin C in as high a doses I can take without getting the runs.
The other thing I do is to address the very common symptoms of depression, anxiety and insomnia. Sometimes natural means can help a lot with these. Things like l-Theanine, 5-HTP, St. John's Wort, SAMe etc can help I used to just tough it out. But I finally realized real damage had been done to my neurotransmitter systems and it was stupid to try to just tolerate it. Google Dr. Cheney and read his stuff.
Basically I take the approach of trying to feel as good as I possibly can given the circumstances that basically are out of control due to damage mold has done. I take 3mg of Intuniv which greatly increases blood flow to the pre-frontal cortex which almost is ALWAYS needed for mold patients who consistently show low blood flow to this critical region of the brain. It is the Executive Center of the Brain!
I run about 5 miles every 3-4 days. That is a great stress reliever and produces endorphins.
Another thing to research and decide if it sounds useful is to google LDN (low dose naltrexone). I have tried it but it interfered with my sleep. I hope to do it at a lower dose later on. Autoimmune conditions often co-exist with mold issues. LDN seems a promising thing to consider.
And to your final question, no, VIP did not help me or about 8 other of Shoe's patients who took it. He claims it is fantastic but I have only talked to one person who believes it helped them somewhat but it was hard to tell. So it is no miracle cure as yet unfortunately.
I hope this helps.
Pat
