Maybe i have not been here long enough but what med's are you sensitive
to,I have a big problem with that as well...Mrs.d many people in our
area have removed very large decks around there homes for the problem
with wood. There was a study done at the Unversity a few years back,
children were getting sick..Sue It's been shown on some news showes.

to add thallium to your list and especially methyl n-butyl ketone and hexane as particularly notorious solvents among the VOC's (volatile organic compounds) that give rise to PN symptoms.

For Glenn's post w/ respect to unknown affects of chemicals after modifications I'd add that the affects of two or more chemicals are generally really unknown in that 2 individually "safe" compounds can become problematic for some people given their particular physiology and biochemical make-up and there's really no predictive way to determine this. I've thought about this type of interaction for a long time since, as an organic chemist I've worked with small (mg) and large amounts (multi-Kg) of literally thousands of compounds over the last 30+ years and despite all of the safety precautions in place one can never totally eliminate an exposure, other than not to work with a substance.

I too have exhausted the traditional tests for heavy metals but the neuros agree that they can't unequivocally rule out that my PN could result from some unknown combo of compounds from my past - just saw a first hand demo of this with an old friend and colleague, also an organic chemist like myself who nearly destroyed his liver and died 2 years ago from some unknown compound or a combo w/ his meds and the herbs that he used - don't know what or why. He's recovered greatly but he's out of the lab now to eliminate that possibility.

I suspect that in time with improved understanding of molecular physiology and more sensitive and sophisticated screening and diagnostic tests that the list of toxins will probably expand.

Sue, the people who removed their decks - was this related to pressure treated lumber by any chance? Pressure treated wood used be treated w/ an arsenic compound as a preservative but I don't believe that's done any longer.
Alkymst

I have just become very sensetive to chemicals and medicines are also chemicals. I think I have a mild form of MCS. Just recently look at my Ultram incident. Also I have permanent (mild) TD from being on tryciclic for a year. Anything that messes with my dopamine doesn't help me much.

I can't hold a bottle of shampoo and take a deep sniff of it. It's too toxic for me. I have to hold my breath when I smell woman wearing parfume in the grocery store. I am unable to tolerate it.

Thanks foe takin the time to answer.

A yes it is remember they have the great new stuff but many patks
and older homes still have it..Like Children who are still peeling and
eating lead base paint from very old houses.. Hugs to all Sue

--almost any doctor can do it under a good local, although dermatologists and surgeons are probably more used to it than others (and some neurologists who check for amyloid and have the training).

The trick is to get doctors to believe it might have some clinical value--AND to get the proper complicated series of analyses done. I would try to have the latter performed through either a speciality lab or a large resrach hospital system.

Hi Joe,

John had a lot of blood tested for various chemicals through Accu-chem Labs. www.accuchem.com It was very expensive....around $900 for the panels the doc ordered. Insurance took care of one third of it. They looked for chlorinated Pesticides, Solvents and Organophosphorus Pesticides. This was based on the fact that he has worked with solvents in the past. In his blood they detected two of the chlorinated pesticides...Trans-Nonachlor and DDE.

The doctor did not believe these were major contributors to current health problems but at the same time, said that blood is not gonna give you the full picture and a fat biopsy, like Glenn said, would yield more definitive results of past exposures.

He said the way to eliminate/detox these toxins, or any toxins held in fat, is through infra-red saunas and at the same time supplementing with minerals. I think it involves daily exercise to cause sweating, daily saunas, replacement fluids and minerals.

You may want to look for doctor who specialized in "functional medicine" or orthomolecullar medicine. Google both. Sometimes the labs can give you a name of a doc that looks for this stuff.

John has not done anything with this information yet. He said he is not about to get biopsy done since his platelets are very low and he's not ready to do sauna therapy. I know in the alternative world, this process is used for detox progams that takes about two weeks. I think if your health is good, you can do this in a non-medical setting or without a doctor's support. But in your case, and John's, I think you need to be monitored more closely if you do the full blown protocol.

Marlene

Alkymyst Thank you for sharing your experience with chemical compounds and mixtures of chemicals and how they might interact differently with different people.

Thank you for the info Marlene, I hope your husband is feeling better soon. What was the time period between your husbands exposure or last exposures and the blood tests? There actually is a program involving daily saunas and sweating out toxins but it is a questionable one because the towels they use on you turn purple when you are finished and they wont let anyone take any to test. I was looking into chelation and i think you are right i shouldnt do it on my own.

Thanks for the info on fat aspirations Glenn, I will check that out.

Joe...thanks and we too hope you find some relief soon.

John worked with lots of different chemicals and paint throughout is life. He's an artist and uses paints, solvents, benzene, glue etc. I think the biggest exposure was back in the 80 when he handled lots of chemicals for processing film. We know that he had "blood" issues as early as the mid 80's but they were never considered to anything to worry about. He was always borderline anemic, bled easily and his plaletes were alway on the edge of normal. What we don't know is if he had this all his life since most of us did not get blood tests until we were well into adulthood. The chemical testing was done this past October so it's been a long time since he was exposed, in great amounts, to those chemicals. We have no idea what pushed him over the edge in 2002. The only thing we could come up with is that in 2001, he caught some type of food borne bug while traveling and then 9 months later, he was in full blown bone marrow failure.

Most people with Aplastic Anemia cannot identify a trigger. But for those who can, it's usually chemical toxins, especially benzene, fertilizers and insecticides; Hep B vaccinations, Hepatitis from drugs, and just plain drugs. Or some kind of viral infection. Unless the exposure/event occurs within weeks/month of exposure, you are classified as idopathic/acquired AA.

So we've pretty much given up on trying to figure out why and just keep focusing on what we can do improve his health profile and supporting all the detox pathways.

BTW....John did do 24 hour urine toxic panel and serum sample, and all the metals were within the reference range. He did these this past October also. I think part of the reason they are as good as they are is because he's been chelating iron for the past four years and it pull outs other metals as well. I looked at his heavy metal hair analysis from June 2002 and mercury and uranium were out of range; Tin and titanium and aluminum were on the high end of normal. I cannot draw any conclusions from any of it though. Oh well.

Please do research the chelation therapy really well and make sure you find a really good doc to administer it. They need to do a good work-up on you, check your blood, heart, kidney function, etc. There's some controversy out there about the use of DMPS. I believe both DMPS and DMSA are sulfer based.

Joe,
I've had the amyloid biopsy and I believe Kmeb also has. It was a simple procedure. The deadened the area on both sides of the belly button that they took the biopsy from.

It only took a minute. It required a bandaid on each side and I had to keep it from getting wet when I showered for a few days. It did leave me with a bullseye bruise on each side. Rather funny looking.

I was negative but I do remember the procedure. I would think any large teaching facility could do this.

Hope this helped in some way.

Billye

Thanks for the info and sharing your experience Billye!