Opinions on progression of toxic cause of PN
 

Im asking here for opinions based on experience, reading, research, observation about the progression of my PN and wether it would fit the time frame of a toxic exposure causation or toxic exposure causing repiratory infections which lead to autoimmune response which attack nerves. After reading another thread about how toxin related PN's take a while to become evident and progress, which i have heard before of course, i just want to throw this out there and see what people think. Please dont hesitate to tell me what you think, Im not going to debate it or argue im just interested in input.

I was exposed to numerous toxins over 6 years ago now in a large dose in a two day exposure and then to a lesser degree over the next four months. I developed numerous respiratory infections and asthma a month later and at the same time i noticed that my big toe was partly numb. The progression of numbness and pain from 2001-2005 was relatively equal on both feet and calves and from 2003-2005 on both hands. Since 2005 it has stalled and hasnt progressed in area that i can notice though the degree of numbness has become greater. EMG/ncs have also not shown increased involvement of areas though the areas affected have gone from moderate to severe in the feet and mild to moderate in the hands. Ive had bloodtests for autoimmune causes, paraneoplastic causes, athena, toxins in blood ( not until October 2003, two years later) mri's, spinal tap etc. Nothing comes back positive except emg/ncs.

I have always felt that my PN was cause by toxic exposure or toxic exposure leading to respiratory to autoimmune response. What has nagged at me is that my numbness started a month after exposure at the same time the respiratory infections started. Based on the timing of the start of PN and the rate of the bilateral, equal progression do you think i may be offbase and what i think caused it is unlikely? Thanks.

I don't think you are "off base"
 

But I have a question. With all the antibiotics, and relapses, for the lung involvement, were you ever checked for yeast/mold cause?

Many pneumonias that are chronic, may be fungal noscomial infections.
And when that happens, the PN gets bumped into overdrive due to the high level of aldehydes the organisms dump into your blood stream.
http://www.merck.com/mmhe/sec04/ch042/ch042d.html

I seem to recall that you respond somewhat to Thiamine. So that makes me wonder.

Joe, there is SO much we do not know about Toxins.
 

Yes I can see where a person suddenly exposed to toxins can and do affect people. Look at how long folks have fought for their rights due to asbestos, coal dust, Agent Orange and other new things? It scares me, but I keep trying to look for any real and true connections.
I have worked in 'insulated' environments where the 'insulation' was likely asbestos, also in truly certified 'sick buildings'...But I had always been in above average health...until I'd gotten that one bout of pneumonia that led me to 'this'...where I am now. I believe it is called either an immune or auto-immune 'cascade'. Some parts of potential problems are genetically in place and have and perform a very delicate balance in maintaining one's health. When things go klaphooey? Well, as we all know they can do that big-time!
I have to surmise that knowing what the toxins are or might be is a help...but in many situtations, such as mine, in a cumulative assault on the 'systems' Its a who KNOWS? thing.
What's worse about this all is that...we are not hot-house flowers. Therefore to the 'scientific' communities responsible for establishing 'cause/effect' true clinical 'evidence'...we, the sufferers aren't the perfect 'lab-rats'.
Also we are of the first generation who has grown to 'age' and 'benefitted from: Processed foods; plastics, microwaves, drug therapies[in copious amounts], and innoculations. Everything is up for supposition?
Joe, I truly wish and hope that SOMETHING can be done to ease your pain, and maybe help you BE better! Soon.
I wish there were, truly ANSWERS out there...just know that...I'm looking for them! This 'ideopathic' stuff has got to end!
For you heaps of these to ease the pain? :hug::hug::hug:'s - j

Mrs. D Thanks for answering!

I have had Ige blood test for antibodies to mold but not the type of blood test where cultures are grown if present. I do get thrush( its amazing how sore your tongue can get) which as you know is candida yeast from time to time during antibiotic/steroid treatments for respiratory infections. It is treated with liquid nystatin. I m up for another blood test. Thanks.

Thanks for answering Dahlek! This is a partial list of known toxins some of which are known neuro toxins. The reason for my uncertainty is the lag between exposure and symptoms such as pulmonary fibrosis, cancers etc. Neuro toxins may destroy nerve much more quickly.

Chromium,
lead,
mercury,
polychlorinated furans and dioxin,
polychlorinated biphenyls, pcb’s,
asbestos,
pvc ,
polycyclic aromatic hydrocarbons PAH’s,
pulverized glass fibers,
alkaline dust ph
coarse particles,
pulverized cement,
silica,
paints,
vermiculite,
chyrosotile,

phthalates,
jet fuel,
Volatile organic compounds
Synthetic vitreous fibers (SVF’s)
Particle bound polycyclic aromatic hydrocarbons PAH’s

I know some of these are not specific but it is all i can find at this time. Thanks.

Hey Joe
 

Thanks for the list,was going to askto compare. Yes the trush ouch,
I eat Activia during the Antibiotic-Steroid,I think most lowfat yogurt
Blue bunny,Dannon works. Ask your Dr.it helps me,and thanks for
bringing. this up...Sue Bob is eating this now after his bout of Pneumonia.

And--
 

--the other aspect to your particular situation, Joe, is that in addition to KNOWN toxins that you were probably exposed to, there are likely many substances that have not yet had toxicity levels established that you were also exposed to. Add to this the fact that many of these substances were altered in unpredictable chemical ways by the heat, pressure, and mixing, and it would almost be surprising if you didn't have symptoms.

When it comes to toxic neural damage, a lot has to do with dosage size as to whether one gets an immediate reaction of whether it come on over a longer period--and there's no way to determine what kind of doses you may have experienced. But I suspect that at the least you're having some sort of autoimmune situation that may involve molecular mimicry from organic molecules on top of what ever inorganic "direct" toxicity your body has experienced from metals and ceramics. And, an aspiration of fat from you body would be very interesting (many of the heavier materials migrate to that type of tissue over time).

I don't see arsenic on that list?
 

It is a major cause of PN. Either thru criminal poisoning, exposure to
toxic waste, and even well water can be high.

A woman in our area got arsenic poisoning from playing softball in a city park that had pressure treated wood near by. They closed the whole park after that event!

Hi Joe
 

When my PN came on, I was actually in a commercial laundry facility all morning. It then came on very sharply in my eyes first,and head, and within weeks spread to entire body. At that time I had both a bad case of bronchitis,as well as a long standing gut infection with H-pylori.

I have become chemicaly sensitive since then,and unable to tolerate a wide array of chemicals,and now as most people know I am now also sensitive to medicines too.

While I am not getting worse,and I don't have too much pain anymore, I do have alot more autonomic system issues that are unpredictable and fleeting, and distress me.

I have had enormous amounts of testing done as well that show that I am rather healthy aside from the PN.

I second what Glen has said, maybe there was a mild toxic exposure, and your immune system went into overdrive especially with a co-infection/virus. In my case it is beleived that it was an immune system attack monophasic in nature.

Thank you Glenn, after reading your posts over the years that is what i have suspected. Thanks for putting it out there again. Who does fat aspirations, as in what specialty?

Thank you again Mrs. D and im not sure if arsenic was present or not.

Thanks Aussie for sharing your similiar type of experience.


Sometimes after the years of noncommittal or skeptical encounters with the medical community, I begin to doubt myself or wonder. Thanks for all the replies.

Aussi
 

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.

Don't forget
 

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

Sue
 

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.

Aussie
 

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

As far as fat aspiration goes--
 

--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.

Accum-chem labs
 

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.

Long time ago....
 

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.

Mayo did the biopsy
 

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.:winky:

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!

Joe,

I had the amyloid biopsy too...a mini tummy liposuction. It is not painful. Mine was negative. Results came in about 2 weeks.

I also recently had a muscle biopsy, that is being analyzed....all I know is it shows myopathy in my bicep, which is quite proximal and far away from the feet and the hands, kind of surprising. It appears neurogenic...so the neuropathy is essentially causing the myopathy, which happens, but usually not so close to the trunk. They also stained the muscle for amyloid...negative. They are deciding if I have anterior horn cell disease of some kind or just rather profound generalized small fiber potentially genetic. I got prelim results in 2 weeks...now waiting for more final results.

Hope that helps.

thanks cyclelops. i hope you get some kind of answer in two weeks. I was never at the level you were, but i was a runner for many years. I used to run to and from work over the bridge and through central park....8 miles each way. I miss that in tune feeling when you get into the rythym. I actually tried a number of times to run again being kind of stubborn but it was like trying to pick up and put down tree trunks. PN doesnt seem to discriminate too much between having been in good shape or not excluding of course a diabetes cause.