Well, I know I haven't posted in like, FOREVER. Fortunately for me I have felt really healthy for a long time and have moved on to other passions. Like doing my 3rd CRM startup. ACT! and SalesLogix were great but I think Contatta is going to be the best and biggest thing I have ever done. And for those of you interested, my supplement company Jigsaw Health is rocking!!
I was amazed when I just checked back into the blog here. I still get several hundred readers per day with over 350,000 readers since I started years ago. Pretty amazing to me. I hope you all continue to find pieces to your health puzzle here.
I thought I would post an email from and my reply to someone who wrote to me. Perhaps some of you would find it useful. Here it is:
Dear Pat,
I apologize in advance that this is so long, I tried to summarize but it is so hard to make this brief. I have been wanting to write you for a while now for advice, since you and I have so much in common, with the exception that you have solved your health problems. I am suffering poor health related to one, more or all of the following factors: mold exposure, candida, and amalgam fillings. I am also a frustrated Shoemaker patient and have the dreaded multisusceptible genetic type. I have never felt comfortable about ruling out lyme as a possible factor either as I live in an area where tick bytes are common. The next four paragraphs are background information and then I want to ask you for some specific advice.
I have been suffering with increasing symptoms since Feb 2010, when we had water damage in our home I have all-over joint and muscle pain, burning sensations in my sinuses and skin (neck/back mostly), a feeling of pressure in my head, stiff neck, brain fog, fatigue, mold and chemical sensitivity, a fungal rash all over my groin and anus, and scoriasis. I have also lost 65 pounds and have some serious gastrointestinal problems.
I believe mold exposure is the primary cause of all this, and I am committed to getting into a mold-safe environment but its been very difficult to do. We left the water-damaged home in August 2011 (after spending thousands trying to figure out where the mold was--and we never did) for a new home but made too many mistakes. Not being a Shoemaker patient at the time and not knowing about ERMI, I hired someone to mold test our new house who declared the house mold-free. But the house did have some issues in the basement and ductwork combined with not realizing how badly contaminated the things we brought with us really were, I have problems in the new house as well. We are selling again and still looking for a clean place to buy or rent and are going to leave everything behind. Thank God, my wife and two young daughters are not affected by mold. But I am so sensitive to mold and chemicals that every place we look at I have some type of reaction to.
I also am getting exposed to mold at work making things even worse. Things are tough at work because my health has left me unable to perform like I did in the past, and they are not sympathetic to my problems. I had to do a secret ERMI test because they would not allow me to do one and results show it is not a safe place (ERMI 8). Shoemaker has advised I find a new job, but now I basically need to replace everything (except my family) in my life: my house, all my belongings, and my job. Thank God I am still working at this time--it would be a disaster if I did lose my job because of all the money this is costing me to try to solve.
Like a lot of people I'm at an impass with Shoemaker. I have done cholestyramine for quite some time but could never tell if its was helping me or not. He treated me for a MARCONS infection of the nose with Rifampin and oddly my head started to clear up, making me more suspicious of my lyme theory, but I've tested negative for lyme multiple times and he doesn't buy into this theory. He wants to give me VIP but won't until my home is less than ERMI 2. Its only an ERMI 2.08 but I've again spent thousands trying to lower the mold, wherever it may be, and have been unsuccessful. Oddly most of the things he checks are all normal. MSH, VIP, VEGF, cortisol, all normal, and I passed my VCS test. The things that are abnormal are high TGF-B1 (ranging from 4,000 to 10,000), high C4A (ranging 4,000 to 8,000) and an abnormal mr spectroscopy. This makes me suspicious that perhaps mold exposure was not my biggest issue and that fungal infection/amalgams are a bigger issue but he has no interest in the effects of amalgam fillings and candida/fungal infections. I had six amalgam fillings in my mouth when this all started and had them removed in July 2011. My fungal rash started sometime in 2010 and has gotten worse and worse, and I know that I'm receiving a "mold exposure" from inside of me as well.
The specific advice I would like to ask:
1) I am so sensitive to mold, and becoming more sensitive, that so many places I go I can smell and react to mold. Will this improve after I get my fungal issues under control? Again I am committed to living (and working) in a mold-safe environment but so many places I go--friends and family houses, public places, restaurants, all smell so moldy to me and I hope this sensitivity will improve once I get everything under control.
2) I have tried every antifungal there is, natural (Pau D'Arco, Garlic, Oregano, Grapefruit Seed Extract, Caprylic Acid, etc.) and prescription (Nystatin, Diflucan, Lamisil, Ketoconazole, Sporanox). Diflcuan worked the very first time I took it but I did not realize that I would need to stay on it a long time and when I went off of it the fungus came back with a vengance. Do you have advice for fighting candida? My rash in my groin area has always been my test if my candida was improving or not. Are there any tests that you know to quantify how bad a candida problem is? Is there a link between mold exposure, fungal infection, and the mold/multisusceptible genotype?
3) I had my amalgams removed but everytime I try to chelate with DMSA/Alpha Lipoic Acid, it flares my fungal problems so bad that I end up stopping. Any advice? Do you recommend any heavy metal tests to see how badly I need to chelate? I do go to an infrared sauna once or twice a week so I am at least getting this type of detox. I was also going for Vitamin C/glutathione IV's which always help but I had to cut back because of the cost.
4) I have the ZRT Lab test in my possession but haven't done it yet. I will be interested to see what it says considering most of things Shoemaker checked were normal. I also see that Losartan can help with TGF-B1 and Intuniv can help with blood flow to the brain--do you have sources for these? Do you know of any doctors in the Pennsylvania area that I could go to that might prescribe these?
Any help you can give me I would appreciate, I'm so glad you were able to regain your health and your life and I would love to do the same for the sake of my family. I have not ordered your book--but if it gives insight on any or all of these topics I will order it as well.
Thanks,
XXXXX
My reply:
Dear XXXX,
It sucks being sick! I know the feeling so well and empathize with you. But you can get better! I assume you have read my book? And the 2 additional "chapters" on my blog?
What strikes me when I read this is that as I look back on my own journey I realize that there were times that I ASSUMED I knew what was wrong with me but even after a long effort of treating it in a way that OUGHT to have helped me, I wasn't helped. Whenever that happens one HAS to go back and assess whether or not the diagnosis is correct? Could it be something else? Is there a better approach? Has there been some damage done that simply is permanent and nothing I do can fix it, but perhaps there is a way I could still feel better in spite of it? Unfortunately, there are VERY few docs who do this for you or even have the time or interest to do so. It pretty much is up to you. Pretty scary to be your own doc at times but you really have little choice with chronic issues. If you can find a doc who is good at this you are blessed!!
There are clues for sure in what you share. The fact that Diflucan "worked" is certainly a clue. And yes, I had to be on it a long time. But at the end of the day Candida seemed to be a sub-issue. Getting my amalgams out was a big deal and I think detoxing Hg over the long haul helped too, but I am not certain about that. On-going mold exposure is a big deal, but the fact that CSM does not seem to help at all is puzzling. It should help some! But you could be being exposed faster than you can detox so perhaps that is why it is no help. I had the same issue of mold at home and work. Fortunately, I was able to change both. BUT you have to keep working and changing jobs probably is hard in this economy. Shoemaker always just says change your job as though that is easy.
You say Vit C and Glutathione IV's help but are expensive. Indeed they are. Jigsaw's sustained release Vit C can be somewhat like an IV in that you can take pretty high doses w/o side effects and is pretty cheap. Transdermal Glutathione is also available from several places.
Lyme? If you have tested negative several times I would rule it out. It would be hard to get the needed Rx antibiotics prescribed and paid for with a negative test anyway.
Here are some thoughts:
Have you ever tried spending most of your time when you are at home outside? Like when you sleep? And take CSM during that time? Perhaps if you can shorten your time of exposure just enough you would see some results from CSM? CSM helped me a lot. And still does if I ever take a "hit" of mold from some place.
How old are you? Have you been tested for testosterone levels? DHEA? Thyroid? The ZRT lab test is going to test what? All of these? Cortisol levels 4 times during the day? One blood test for cortisol is not conclusive of much. And typical Thyroid testing (TSH) is virtually meaningless. (See "stop the thyroid madness" book.) If you have been sick a long time, damage to the hypothalamus is likely and is usually permanent. This means that you would be hypo everything. Supplementing cortisol, thyroid, testosterone, dhea could help a LOT! But with your MSH, VIP and VEGF levels normal it suggests the opposite however I have found those tests to be iffy. They go up and down a lot for no apparent reason. I would NOT take Shoemaker's VIP Rx if my level was normal. Only 1 person out of about 10 that I talked with (plus myself) who took his VIP, felt better with his VIP and ALL of them had tested with essentially 0 VIP. IMO it just does NOT work. Very expensive too. I could be wrong and hope there are a lot of people he is helping with his VIP, I have just not heard from them.
Shoemaker's tests for and diagnoses from markers that are pretty esoteric so I am just not sure I believe him. C4A and TGFb1 goes all over the place from people I have talked with and been tested repeatedly by Shoemaker. I know people who felt the best when their levels were off the charts and terrible when they were low! So I just don't know I trust his stuff. Plus, there is essentially only 1 lab that tests for these and that is experimental. Very unreliable in my opinion. I even know two people who have the "dreaded genotype" who have no symptoms at all!! So, I think Shoemaker definitely is seeing SOMETHING and has made some correct correlations, BUT I don't think he has unraveled this thing yet. Certainly from feedback I have from patients of his, he certainly does not make many of them feel better! Mostly they end up totally discouraged and some even just give up.
Having said that, high TGFb1 levels are absolutely known to be a big problem. Curcumin (http://www.epic4health.com/cuul500mgena.html) is proven to bring down TGFb1 levels dramatically as well as a host of other things that Shoemaker measures and talks about. I take a gram per day. My company Jigsawhealth is getting ready to intro a Curcumin product. Losartan and Actos (both Rx but available internationally w/o an Rx) both can help a whole lot with most of the inflammatory issues from mold. Curcumin probably does just as much as both of them and certainly is safer and easier to obtain and is cheaper too (unless you can get an Rx for them and you have insurance.)
Testing for Candida is tough but the best might be an OATS test http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive can be insightful in many ways. Arabinatol level is the key marker.
Have you ever taken a blow to your head as in a car accident or anything? Read my blog on that. It turned out to be the MOST significant issue for me and I did not learn of it until after I wrote my book. What psyche problems do you have? Depressed, anxiety, ADD-like, insomnia? These are very typical and we usually write them off as "situational". "If I could just get rid of Candida, Mold, Hg poisoning etc I would not feel so bad." But they often are NOT situational at all.
The fact you have low blood flow to the brain and are asking about Intuniv is interesting. I take guanfacine compounded as sustained release because Intuniv just costs too much and is nothing more than very cheap quanfacine. It is a very simple med and has helped me a lot. I had proven from a SPECT scan that I had very low cerebral blood flow to the pre-frontal cortex. Gingko helps here too. I fought psyche problems for decades before I finally quit my resistance to treating them with Rx meds after I learned I had sustained a traumatic brain injury (TBI) in a severe whiplash car accident I had back in college (37 years earlier). Once I got the mix right (not easy) I felt TONS better!! Do immune system problems from Candida, Hg, mold, cause one to not sleep well, or does not sleeping well cause the symptoms? Chicken or egg!
Basically, a combination of my TBI, amalgams, mold etc ALL worked together to cause damage to my hypothalumus that I could do little about. Certainly ALL the things I learned to do along the way definitely HELPED me, but they were mostly helping to control the issues, not CURE them. So I have focused on doing many of those things (exercise, good food, supplements, detox, avoiding mold and lots of chemicals etc) but my main focus has been on supplementing ALL the things I learned I was hypo in AND I took a few Rx meds that helped me sleep much better, not feel depressed and anxious for no reason at all. It seems once you have sustained some significant "hits" to your various systems, there is simply damage and nothing is going to "cure" it short of a miracle. There is no miracle substance or med that will do it all. It is a multi pronged effort it seems. You certainly can get and FEEL a whole lot better!!! And you should try to do BOTH!!!
At the end of the day you HAVE to have help managing symptoms as best you can WHILE you try to unravel the real puzzle pieces. The 2 biggest things for me BEFORE I discovered my TBI was to take a med to almost totally relieve the weird anxiety I ALWAYS felt, and low dose hydrocortisone for my very low adrenal function. They were HUGE. Knowing I had some control over how I felt was liberating in and of itself. It gave me hope I could unravel more stuff. Shoemaker won't do either one. But you can find a doc who will if you look hard enough.
I wish there was a magic bullet I could tell you but there just isn't one. But there are bullets you can discover that can help you get better and feel better. Hope this helps some.
