Multiple chemical sensitivity: Genotypic characterization, nutritional status and quality of life

[Effi]

http://www.elsevier.es/es-revista-medicina-clinica-2-pdf-S0025775317300933-S200

Multiple chemical sensitivity: Genotypic characterization, nutritional status and quality of life in 52 patients

Viviana Loria-Kohena,, Helena Marcos-Paseroa, Rocío de la Iglesiaa, Elena Aguilar-Aguilara, Isabel Espinosa-Salinasa, Jesús Herranza, Ana Ramírez de Molinaa, Guillermo Regleroa,

a IMDEA-Food, Campus de Excelencia Internacional (CEI) UAM+CSIC, Madrid, España
b Departamento de Producción y Caracterización de Nuevos Alimentos, Instituto de Investigación en Ciencias de la Alimentación (CIAL), Campus de Excelencia Internacional (CEI) UAM+CSIC, Madrid, España

DOI: 10.1016/j.medcli.2017.01.022

Background and objectives
Multiple chemical sensitivity (MCS) is a chronic, multisystem syndrome of unknown etiology. The aim of the present study was to describe the nutritional status and quality of life of patients suffering from MCS, as well as to identify potential polymorphisms associated with this illness.

Patients and methods
A cross-sectional, descriptive study was performed on patients with a diagnosis of MCS. Data on anthropometric and body composition variables, hand muscle strength and quality of life were collected. The selection of single nucleotide polymorphisms (SNPs) was based on genes previously associated with MCS and genes involved in inflammatory and oxidative stress pathways.

Results
A total of 52 patients (93.2% female), with a mean age of 50.9 (10.3) years were included in the study. Among them, based on their BMI, 48% had an inadequate nutritional status (17% were underweight and 32% were overweight or obese). Thirty percent of patients had a low muscle mass for their age, 84% had muscle strength below the tenth percentile, and 51.8% had a high fat mass percentage. Regarding quality of life, all median scores were lower than those of other illnesses assessed for every subscale assessed. Statistically significant differences between patient cases and controls were found with respect to rs1801133 (MTHFR), rs174546 (FADS1) and rs1801282 (PPARγ) polymorphisms.

Conclusion
A high percentage of patients had a poor nutritional status, low muscle strength and decreased muscle mass. These facts exacerbate the already-lower quality of life of these patients. Specific genetic polymorphisms associated with the syndrome or its pathogenesis were not identified.

 

[btdt]

ok I need some help with this likely in part due to my genetic education deficit...

are these two statements on in conflict with each other

"Statistically significant differences between patient cases and controls were found with respect to rs1801133 (MTHFR), rs174546 (FADS1) and rs1801282 (PPARγ) polymorphisms."


"Specific genetic polymorphisms associated with the syndrome or its pathogenesis were not identified."

At 23 and me there is a mcs thread which seems to have turned up at one thing in common alpha a ( or some times there is a 1 rather than an a) alpha 1 antitrypsin deficiency like that or like this alpha a antitrypsin deficiency...

trypsin is mentioned here in this paper as part of the system that is damaged

" Toxic chemicals and pollutants adversely affect the biological detoxification systems; columnar epithelial cells, fibroblasts and inflammatory cells are the first barriers encountered. Sevenll metabolic alterations follow the creation of free radicals. which damage the microsomal membrane depleting ATP. Lipid. glucose and protein metabolism are altered. Detoxifying enzyme systems like the monoamine oxydase, chromium p-450, glucose 6-phosphate dehydrogenase, trypsin and chymotrypsin systems are damaged. Also, the sullllydryl system is altered. After severe or prolonged stimulation, these systems will become depleted. lllese systems are frequently catalyzed by vitamins and minerals, which may also be depleted by pollutants. Once tllese systems fail to detoxxify pollutants, more i,runune dysregulation may occur.38 The noxious substances retrogmde up the peripherdl nerve afferent slow C and rapid A-delta fibres to the dorsal root ganglion. Substance P and somatostatin are released. Substance P will cause local vasodilation and vessel leak, chemotaxis occurs and leukotrienes are released, and nonIgE histamines are triggered. Somatoslatin genemlly attempts to counteract substance P by dampening the nerve impulse.39-4t This may explain the increased incidence of peripheml neuropatlly in people exposed ID levels ofsolvents generally regarded as safe.42-43 T cells may also be affected.44 When the T cells are reduced in number or when their function is impaired, they cannot control B cell antibody production. Without T cell conuolthe B cells cannot distinguish hannless dust pollen, animal dander or nutritious foods from toxic chemicals or life-threatening bacteria or virus. The immune system's response ID antigen exposure is not affected.in a linear response to dosage but rather in a biphasic manner.45-47 Low dosage antigen exposure has a suppressing effect on the immune system due to the modulatory effects of T-suppressor cells.48 - 49 Therefore, there is no tolerance to antigen unless specific T-suppressor cells dominate T-helper cells. This is also because different levels of histamine are secreted according to different levels of antigen exposure. Studies indicate that low levels of histamine activate T-suppressor cells.5o Macrophages also participate in the initiation and regulation of immune responses 51 by secreting humoral....."

and it goes on... to the treatment which is what I was looking at the desensitisation treatment

http://ages.ca/sites/default/files/...estheargumentssbotaginghumanrights1988ocr.pdf

This is what is on my mind today I am on a two year waiting list for the desensitisation treatment... and I was thinking if mcs if an extension of cfs like I was told at the clinic I go to... why are they not treating people with me..cfs with desensitisation... before they get more sick with more dx problems ..

at this point I have me/cfs ... mcs .... a movement disorder that nobody is in a hurry to dx I have been put on yet another waiting list for a movement disorder clinic that is also a 2 year wait ... seems if I make it to the 2 year mark still alive and well enough to get there I may get treatment if I have enough money to pay for it... it is very costly... not covered by insurance... or I may get an actual reason.. dx of why I have movement disorder... nos .. is my guess. They will say they don't know....

In the mean time I have days once exposed I cannot get up and lay in bed and jerk.. days I cannot hold a thought in my brain... when is the next hit... I am sure I don't know.. I never know when or if I will make it back here to follow a thread.. ect... long time lapses may happen.

The idea stays with me .. could me be treated with desensitisation therapy has anyone ever hears of it of this?

 

[btdt]

rs1801133 I am AG
rs174546 " CC
rs1801282 " CC

How does this help me in any way... does it or is it just an interesting story for some people... who do studies. Gets them some cash I guess.

Other people here with mcs... what do you have on this test? What do you think it means if anything?

Does it in any way point to a treatment...

which bottom line is what we all want to get better.

 

[btdt]

I am thinking some of the authors could be a good place to start to ask questions
John Molot. M.D. Jozef Krop, M.D. Lynn Marshall. MD. John MacLennan. M.D. Marian Zazula. M.D. Roza Radulescu. Ph.D. Wanda Wilson
John Molot is the author of 12,000 canaries can't be wrong
12, 000 Canaries Can't Be Wrong: What's Making Us Sick and What ...
https://www.amazon.ca/12-000-Canaries-Cant-Wrong/dp/177041133X
12,000 Canaries Can’t Be Wrong: What’s Making Us Sick and What We Can Do About It Hardcover – Jun 1 2014. ... 12,000 Canaries Can’t Be Wrong is a culmination of Dr. Molot’s 30 years of experience seeing more than 12,000 patients with environmentally linked illnesses.

 

[Learner1]

Toxic chemicals and pollutants adversely affect the biological detoxification systems; columnar epithelial cells, fibroblasts and inflammatory cells are the first barriers encountered. Several metabolic alterations follow the creation of free radicals. which damage the microsomal membrane depleting ATP. Lipid. glucose and protein metabolism are altered. Detoxifying enzyme systems like the monoamine oxydase, cyp-450, glucose 6-phosphate dehydrogenase, trypsin and chymotrypsin systems are damaged. Also, the sullllydryl system is altered. After severe or prolonged stimulation, these systems will become depleted. These systems are frequently catalyzed by vitamins and minerals, which may also be depleted by pollutants. Once these systems fail to detoxify pollutants, more immunune dysregulation may occur

Does it in any way point to a treatment.

My naturopath set 3 main treatment goals a while back: repair mitochondria, strengthen immune system, and detoxify. And, from everything that's happened since and the research I've read, it seems more true now than ever.

My family has a plethora of toxin related serious health problems, including cancers, autism, Parkinson's, etc. We've dug into our genetics and unsurprisingly, we are lousy phase 2 detoxers and tend to be depleted in glutathione, other antioxidants, methylation nutrients, and cofactors, tending to make peroxynitrites, which damage mitochondrial membranes.

The game plan is to deal with my immune system, certainly, as that's definitely important.

But repairing and supporting mitochondria with NT Factor and Mito cocktail nutrients along with a full detox program including PolyMVA, an alpha lipoic acid polymer that pulls toxins out of mitochondria, where they've been sequestered, mobilizing them into the bloodstream and supporting Phase 1, 2, and 3 detox pathways with nutrients are critical, too.

The NT Factor helped. The Mito nutrients helped. Detoxifying is an ongoing process, as I have been very toxic, with measurable arsenic, cadmium, lead, mercury, antimony, aluminum, MTBE, styrene, etc., but it's gradually improving. It's been a full time job, my liver is usually slightly stressed, and the process occasionally gets out of balance and my symptoms act up, headache, smell sensitivity, intestinal discomfort, etc.

I'm likely more toxic than many on this site, but those with chemical sensitivities likely are, too.

My experience is that detoxing is tedious hard work, and that dabbing at the problem does little. The program I'm on involves extensive oral supplements and IVs, on top of a nutrient dense diet, and a lot of gut health support.

But, this is likely more complicated than most people want to deal with... I know I'd rather not, but having clean, functioning mitochondria, working pathways, and a happy immune system seems to be the path to wellness.

Or, maybe there's a pill that will fix it. I doubt it though...

 

[btdt]

Wow your so far ahead of me...

I tried a nd... for a few months.. tried a few different things some potions and sprays... one for immune one for thyroid one for ... I can't recall.. some upset my apple cart big time.

I got very ill in the fall last year after he suggested I do a 23 and me test... I did it he looked over the results in a phone consult ( he had no apts I had missed mine) and right away suggested I take B6 even tho I told him I can't tolerate b6... I had missed my apt cause of illness and had not taken anything he had given me for a few wks... I tried the B6 and like always got so depressed I could not lift my head... so stopped. I have no idea why that is... but it has been that way a long time.

I think that about clinched it for me not trusting his advice... I put my 23 and me results into genetic genie and another one I can't recall and looked at Amy Yaskos site... according to her I should not take B6 either... I was trying to sort out which supplements to take when I got sick again and fell off the earth for a few months... that is how it is for me when I am ill and it affects my memory I can't recall where I was in the process and have to start over.

I have thought of going back to the nd... or finding a new one... since I have not worked in 10 -11 years .. and supplements are so costly.. I don't know that it is a good use of my money... I cant' decide ... when I got here Yasko's ideas are said to be junk science ... I am not sure what my next move it...

I am on the waiting list for desensitisation therapy... what do you think of that?

I do take a lot of supplements mostly for detox I could not live at all without them... and I am not sure this is living with them... I can't sort out my methylation stuff .. but I am still alive and will when I can think well give it another shot...

How did you find your nd??? was he listed as treating mcs?

 

[btdt]

ps
what helped me a lot was coffee enemas.. I know it is gross but it cleared my head... then I started having more too gross to say problems with that treatment... but if your in a bind... it did help me.

 

[btdt]

I am going to look up the things you suggest
Nt factor
The composition is: phosphoglycolipids (polyunsaturated phosphatidylcholine, glycolipids and other polyunsaturated phosphatidyl nutrients), Fructo-oligosaccharides, Rice Bran Extract, Opti MSM, Bromelain, Sulfur, Pantethine, Inositol, L-Arginine, L-Glycine, Taurine, Alpha Lipoic Acid, Garlic,Spirulina, Beet Root Fiber ...
I am using a hemp version of this with added sunflower powered can't think of the name for phos choline also have choline in pill form and phos choline in capsule too large to swallow... I add flax seed to it .. to be sure the old oils getting pushed thru do not get redigested... a couple of things in yours I don't do well with... inositol.. arginine msm... taken alone as I learned to do in hard withdrawal from ADs I am very careful what I take... I am not keen on them so far may try them again another time... I love glycine.. love it... garlic I eat like an addict raw or not don't care I can't be short on that... p5p I take daily and I cannot live without b1.... my brain completely fails without b1 I worry I am not taking enough.
itamin Cocktail for Mitochondrial/Metabolic Myopathy
Take with meals

• Thiamine 100 mg three times daily
• Riboflavin 100 mg three times daily
• Vitamin E 400 IU three times daily
• Vitamin C 500 mg three times daily
• Folic acid 1 mg daily
• Co-Q-10 200 mg three times daily
• Creatine powder 5 grams daily
• Levocarnitine (Carnitor) 990 mg three times a day (prescription medication)
• Can also add Tonic water at night if having significant muscle cramps.

I am not taking enough B1... really dont' like B2... dont' want to say why as I can't think of a nice way to put it... I have been advised by a liver specialist to take only 400mg of vit E... so not enough of that either... Vit C I think causes problems maybe with a kick up of EBV not sure why I have to limit it... I do not take any folic acid... not enough Co Q 10... creatine I did not notice it helping stopped... Carnitor dont' take never have

so I guess I could up some of these... maybe I need to be careful

Ploy MVA

• alpha-lipoic acid. ...
• Vitamin B-12. ...
• Vitamin B-1 (thiamin) ...
• Vitamin B2 (Riboflavin) ...
• Molybdenum. ...
• N-Acetyl Cystiene (NAC) ...
• Methionine.

I have all of this here I don't always take it... out of B12 yasko says I should take B12 adenoise or some such thing I can't recall....but may be scrapping her ideas... I am not sure yet I am trying to decide and can't think well enough right now to do it...

" I have been very toxic, with measurable arsenic, cadmium, lead, mercury, antimony, aluminum, MTBE, styrene, etc." What sort of testing did you have? Was it a hair test... my hair test showed high cadmium and iodine.. then I heard the hair test is not reliable... I have to learn who to listen to... I am lost I just don't know what to do next... I stick to what I think is helping.

Thank you for the sign post I will see where it leads me.

 

[Learner1]

@btdt

Sounds like you're taking a lot of things, too.

Important to know why, and how they're affecting pathways... and get some occasional feedback to know what's going on.

I've found the Genova Diagnostics NutrEval to be invaluable in helping, but one needs to understand the context.

Yasko is a place to start, but I found the descriptions on Dr. Roberts Heartfixer website to be useful as well as getting Ben Lynch's Pathway Planner and watching his videos, particularly if you know your genetic SNPs.

For toxins, my doctors have preferred 6 hour provoked urine heavy metals test from Doctors Data, using some combo of EDTA, DMSA, or DMPS. It shows what will come out of you, and we've used it to track chelation of arsenic, cadmium, lead, mercury, and platinum.

The PolyMVA is specifically formulated to pull toxins out of your mitochondria. The metals in it provide the capability to latch on to the toxins and pull them out, facilitated by the ALA which is the only thing that can get toxins out of mitochondria. The literature online about it isn't very adequate, but there are studies discussing "alpha lipoic acid polymer" which show it to be effective.

I've been taking it for 9 months, and it has pulled out arsenic, lead, MTBE from gasoline, and styrene in measurable amounts, making me quite sick if I didn't have enough Phase 2 and 3 detox support to keep it moving out of my body.

That's where the Bs come in. One needs enough B12, along with compatible amounts of MTHF, P5P, riboflavin, and magnesium to make enough glutathione.

And antioxidants taken together, A, C, E, ALA, etc. working with the glutathione, so that the antioxidants keep dealingvwith the fee radicals. I take high dose vitamin C (4g orally daily, 100g IV weekly?)to tackle my viruses, along with artesunate/artemesinin.

NT Factor offers the ingredients needed for mitochondrial membranes in the correct proportions. Taking choline, PC, etc. Is OK, but if your gut isn't healthy, you can build up TMAO, which has been linked to cardiovascular issues.

There are other mitochondrial support nutrients, too.

 

[caledonia]

and it goes on... to the treatment which is what I was looking at the desensitisation treatment

http://ages.ca/sites/default/files/...estheargumentssbotaginghumanrights1988ocr.pdf

This is what is on my mind today I am on a two year waiting list for the desensitisation treatment... and I was thinking if mcs if an extension of cfs like I was told at the clinic I go to... why are they not treating people with me..cfs with desensitisation... before they get more sick with more dx problems ..

at this point I have me/cfs ... mcs .... a movement disorder that nobody is in a hurry to dx I have been put on yet another waiting list for a movement disorder clinic that is also a 2 year wait ... seems if I make it to the 2 year mark still alive and well enough to get there I may get treatment if I have enough money to pay for it... it is very costly... not covered by insurance... or I may get an actual reason.. dx of why I have movement disorder... nos .. is my guess. They will say they don't know....

In the mean time I have days once exposed I cannot get up and lay in bed and jerk.. days I cannot hold a thought in my brain... when is the next hit... I am sure I don't know.. I never know when or if I will make it back here to follow a thread.. ect... long time lapses may happen.

The idea stays with me .. could me be treated with desensitisation therapy has anyone ever hears of it of this?

Hi, I have MCS and have done provocation/neutralization. It works great. It's a treatment, not a cure. In other words, if you stop the drops, you will have MCS symptoms again.

I can't believe you have a 2 year wait. Is there anybody else within a reasonable distance who does this?

My MCS is about 50% less than it used to be. What helped me is was getting my last mercury amalgam removed. About a year and a half later, I was able to discontinue my neutralization drops, as well as many other positive improvements.

As far as the cause, according to Andrew Cutler, it's mercury + arsenic. Due to my experience with improvement after the amalgam removal, I'm inclined to believe this.

I've done hair and elements testing, and have mercury and arsenic. I also have many, many symptoms of both.

I'm currently chelating with the Cutler frequent dose chelation protocol. I don't suggest using the protocol or supplements that Learner1 is using. The reason is that if you don't dose chelators (ALA (alpha lipoic acid), DMSA, or DMPS) within their half life, you will get mercury distribution, and it will make you worse.

I have learned this the hard way trying other protocols.

There is a lot of bad misinformation out there on chelation. Here is info on what not to do - stuff that makes people worse: http://cutlersuccessstories.weebly.com/what-not-to-do.html

Don't do provoked urine tests. Don't take supplements with alpha lipoic acid as you're probably only going to be dosing those once or twice a day, which is not frequently enough.

I have more info about the Cutler protocol and links to testing, the protocol, support forums, etc. in my signature link, where it says "Caledonia's methylation links". Once you click that, the Cutler stuff is towards the bottom of the page.

The chelation should not only help your MCS, but also your ME/CFS.

 

[Learner1]

Chelation should be done with supervision. It is not a do it yourself project.

I have been doing the protocol I described under expert supervision with doctors with many years of experience treating many patients successfully.

I started with oral chelation, with both DMSA and DMPS, and chelated a lot of mercury. I had my dental fillings removed. The process took 2.5 years. It went too slow, though because...then I got cancer, likely from the huge load of toxins I was still carrying around. Went through carboplatin chemotherapy, leaving me with platinum toxicity.

Chelated for 8 months to get most of the platinum out with IV EDTA, along with methylation vitamins, glutathione, and mineral replenishment.

Apparently, most patients bounce back after that....not me.

We then started IV PolyMVA, which tanked me. My doctor and the Poly people said most people don't react like that - it gives them energy. He measured and my blood showed acute arsenic exposure.

Oddly, arsenic had never shown up before, in urine or blood tests. It did now, coming out of my mitochondria, and I had all the symptoms of arsenic toxicity. Arsenic stops ATP production, hence my fatigue.

I'd been getting it with IV B vitamins (lots), magnesium, aminos and glutathione. They increased the dose and added IV curcumin, a great Phase 2 detoxer.

I spent a couple of months on that, then discontinued the curcumin (it's expensive), and have been on oral and IV PolyMVA with nutrients and glutathione since. And I take liposomal EDTA and a little DMPS orally, pulsing a few days a week.

I now have no arsenic and no mercury, but recently have had lead pouring out of me. And styrene. And MTBE, a gasoline additive. These things didn't show up on previous tests either.

And I'm steadily gaining energy. If I could only get my immune system working, but that's another project.

I know this all sounds crazy and hair raising. But, I can assure you it's been done by experts in a safe clinical setting. And I've dug up research paper after research paper during my journey that supports the science of what's going on.

I had stage 3 cancer. Immediate family members have had leukemia, lymphoma, Aspergers and measured arsenic, lead, and mercury toxicity. We pick up toxins due to lousy methylation SNPs.

If I had to depend on the Cutler protocol, or eating cilantro, taking chlorella or doing juice cleanses, I'd be dead by now. They're like a dribble when I need a waterfall.

I've been detoxing on and off for 6 years, and I'm not done yet. It's tedious and I hate dong it. But, I've come a long way, and there's finally a light at the end of the tunnel.

Things I've learned:

- we're more toxic than we think, and they're stored deeper than we think, in our mitochondria

- toxins don't come out evenly, they tend to come one after the other

- provoked urine tests show what comes out, they're an incredibly useful tool (though there's no way of measuring your toxic load, unfortunately) Blood tests shoe acute exposure. And hair tests show what your body puts into hair.

- best way to detox is not to put toxins in you

- methylating well and making/recycling glutathione is critical

- have a strategy for mobilizing, then getting what you've mobilized allege way out of you soit doesn't get redeposited, like your brain...

- care for your mitochondria

There's a lot of bad info on the web on chelation. Problems happen when people don't have a thoroughly thought out strategy and do a half-baked job.

The Cutler protocol is good for baby steps, if you don't have a competent doctor. But, I need to detox faster than that or I'll die before I get detoxed. My doctors have opened the flood gates, going as fast as my liver and kidneys will allow, and it's finally making a difference.

 

[btdt]

Learner 1 and Caledonia first of all thank you for all this information. It is a lot to digest but I will pick away at it when I am well enough. I find I don't make great decisions when I can't think so trying to get to the next step decision in some rational way.

I am assuming the doctors helping you both are ND is this correct?
Have you read or heard of this
https://www.inspire.com/grayfancy/journal/fibromyalgia-is-caused-by-the-environment/?ga=freshen


"
2008 research indicates that individuals with the genetic polymorphism associated with hyperbilirubinemia disorders, like Gilbert’s Syndrome, have a greater susceptibility to multiple chemicals sensitivity. Gilbert’s Syndrome is common, thought to occur in 5% of the population."

I don't know what Gilbert's Syndrome is yet... but I will look. that's a cop out will look now...
Gilbert's syndrome - Mayo Clinic
www.mayoclinic.org/diseases-conditions/gilberts-syndrome/basics/.../con-20024904
Jul 2, 2015 - Gilbert's (zheel-BAR) syndrome is a common, harmless liver condition in which the liver doesn't properly process bilirubin

One thing that comes to mind when I see liver mentioned is at the 23 and me site some people who have mcs also have alpha a antitrypsin deficiency.. and I wonder right off if this has anything to do with Gilbert's Syndrome...

here is a person who has both...
http://www.allthingsmale.com/commun...ome-a1at-deficiency-subjective-effects.18398/

All that jumped out at me from skimming ( all I am up to today) is brain problems early dementia... given how I can't think half the time...today is about 5 out of 10 lots of days it is 2 and you will not see me here those days... maybe there is a hint here but I am can't sort it ...could be yet another wild goose chase.

How do you know if your ND is competent... I went to one for about a year took a lot of stuff some seemed to help some hurt...lots of it made me worse. To be fair when I started with him I did not have the mcs dx but I knew I had it.. and some visits I could barely communicate with him that is how bad my thinking was ... I would drag myself in there and he would have to have half guess how I was doing due to my not so much muteness more an inability to sort what I needed... as I could not think or report how things were going on some visits. I would often call when I felt best and leave messages for him with the receptionist not sure how well they translated or if they did.

If you had to say one thing to start with I guess it would be to avoid toxins... I dont' have my own place and even that is tricky... maybe I need to work on that first.

The problem is money.. I don't have enough or I am not sure how much treatment is going to cost me so I am trying to keep my money as I would hate to be completely broke by the time I get into desensitisation... and I am close enough to broke now worry. I have spent a lot of money on health care not covered by Canadian fed insurance already... and I think any normal person could not afford it when they are unable to work.

How do you people pay for this? I am serious how can you afford it.. could you tell me how much money you spend on treatment in say a month or a year... what am I looking - How much?

Had I known what was wrong with me 10 years ago I could have really thrown some money at it with proceeds from selling my house but 10 years of not working has depleted my cash.

So how much does it cost to get well or better?

I a lot on supplements chiropractors and an osteopath right now these things simply make life sort of livable. I don't think they are curing anything I am sure you know what I mean. I spend a lot on transportation as often I need to take cabs...

I think one day should all this be recognised by our health care as a disorder that needs treatment that some care would be covered... however we are not there yet and like you learner I don't think I can wait around for it. There is a 3 year task force in the process now in Ontario to study what to do.. and maybe make suggestions to health care... either way I have had this many many years... I am wore down.

As for desensitise treatment it is not covered either I don't have specifics on how much it is but hear it is expensive. There are two places in Ontario that do it according to google.

I went to one and was told I am too complex for the docs old brain he did not want to take me on he also stated my next stage will be cancer.
I seen him on my own but my doc had sent a referred me to him at the same time. I told my doc what he said then ... months later after my doc pushing for an answer to her referring me to him. My doctor got a letter from him saying he would test me to see what I am having problems with.. nothing was said about treatment in the letter just testing...
I got a copy of the letter his office wrote to my doctor... a work of fiction... in my opinion as he said none of that to me when I was in his office. This letter came after I was on a fb mcs website and outed him naming names... I also got banned from the mcs fb site I think as the link disappeared ... to my fb page.. whatever... if telling the truth gets me banned I don't want to be there.

I don't really want to see a doctor who act this way I could not have any faith in his ethics... not that all doctors or ethical but not all have proved to me they are not... and it could be he is completely ethical...and who ever does his reporting isn't. I can't be sure... still I feel I cannot afford to fool around with testing things that are toxic to me ... when the doctor told me straight up he is not up to it. I actually appreciate his honestly.. the old saying rings in my ears...

when somebody shows you who they are believe them... he told me good enough for me

So the other doctor is a 2 year wait neither are in the city I live in.

That is a lot about me and not any further on the real meat of this issue I need to sort out... I have to wait for a day the part my brain that could sort things kicks in.. that is not today.

Thank you both for your input...

 

[btdt]

Learner as far as getting information from the internet I seem to suck at it ... thought I was doing ok till I got sick last but maybe I wasn't.... never did sort out methylation for instance.

I already did 23 and me genetic genie panthion or something like that .. I think you could have the best equipment and still need somebody to operate it. Dr Pall has two things one called pathway planner and another called strategene...
not sure what they do and I am going to see if I can find out.
If you know right off could you please just tell me...some days I need to spoon fed.

Before the last crash I had sorted this much most of GSTT1 I don't have it is caput... GSTM is half working... the other one I think there are 3... I don't think 23 and me has..if it does I have not found it yet. I have a drug problem in that my body cannot properly metabolise 33% of drugs on the market... tho I likely had a lot of them as I have a long medical history of drug taking and bad reaction. ( usually I was told that reaction is not possible take your pills )
I can't recall what that was but some on my p450 sort of things are not right.
half alpha a antitrypsin deficiency... I am half ok half not. lol that is my clouded understanding of it all a snapshot of what my brain will allow today. My family too is riddled with illness mostly after taking a drug sometimes to prevent rather than treat illness...

AS for styrene... I see you mentioned it... I did a stint of boat building when I was young... have never been a good drinker.. nick name half point as I could in my youth tolerate half a bottle of beer.. that is Canadian beer it is strong I don't touch alcohol now and haven't in years. I take the least drugs I can... stopped the long stint of drug use 10 years ago after a collapse.

 

[caledonia]

@btdt As long as you don't have to remove mercury fillings, the Cutler protocol isn't that expensive.

As far as length of time, I was told I was very toxic and it would take 4 years to totally detoxify.

=-=-==-=-

You maybe might be able to have a homeopath make up the neutralization drops. Or even a scientifically minded friend, given instructions on how to make homeopathic solutions. (I've found some online).

There are 4 substances you could be intolerant to - glycerine, formaldehyde, ethanol and phenol.

So you find sources for each of those. Then make up homeopathic solutions with different dilutions. Then you do trials of each one.

If you react (get spacy, anxious or whatever your symptoms are), then you're intolerant to that substance.

Then keep trying different dilutions until the symptoms clear. Then that's the drops you would take.

I'm intolerant to glycerine and formaldehyde. So it was a half a day in the office trying out drops. Then it cost me about $20 a month for 2 bottles of drops.

I'll send you a little more info backchannel. If you're near Ohio maybe you could even see my doc. I see on Google maps that Ontario is quite a large area though. But it sure wouldn't be a 2 year wait. More like a few months.

 

[btdt]

I am sure I react to phenol thru google I sorted that out long ago before dx even years ago. There may be more by now... I looked at the Ben Lynch doc guide there is one in mississauga... quite far from me still.. I am not sure thinking about it he is a homeopath not a naturopath... maybe try one close to where I live and see if he will train himself... tho I am not up to being lab rat anymore there my be no getting around it.
I have to wear a mask when I go out and it does not mean I won't have reactions travelling is becoming more difficult as time goes on. When you were tested and reacted to the compounds that affect you... did somebody go with you to get you home... when I am around some things I really can't think jerk so bad I can't walk I would not be able to get home is my worry. So would have to plan to have a care taker ... I do not live where most of my family do ...moved there are no doctors where they live I had to get out and get a doc... so I don't have a lot of people who could come hold my hand it is a drag to make somebody take time off work to do so when what your doing is so misunderstood... and hard to explain even if you could think well enough to do it and had the energy.

I am sure formaldehyde too as I can't stand clothing stores and new things I got a xmass went in the trash I can't tolerate them I will wear my old clothes thank you... I hope gift givers never read this..

 

[Learner1]

@btdt
You're asking a lot of good questions. From what you've shared, toxicity and your liver's ability to process toxins and get them out of you is critical. The ability to make and recycle glutathione is essential, and you may be compromised at it, which is why toxins build up.

I encourage you to read more on Martin Pall. There's a lot of merit to what he says. Here's an example:

http://www.ei-resource.org/articles...tions-for-chronic-fatigue-fibromyalgia-a-mcs/

I already did 23 and me genetic genie panthion or something like that .. I think you could have the best equipment and still need somebody to operate it. Dr Pall has two things one called pathway planner and another called strategene...

Yes. 23andme just tells you what's there, then you need the raw results translated. Strategene is one, Tree of Life and Opus are more detailed. The Pathway Planner (Ben Lynch) helps with a visual of what's going on so you can see where the bottlenecks might be, depending on environmental factors, too.

A competent doctor could help you look at this picture and customize a treatment plan. I do see an ND, but MDs, DOs and DCs can help too, if they have functional medicine training. I've learned that US trained NDs get more rigorous training than in Canada.... look for someone trained at Bastyr, preferably, and one who focuses on lab work and supplements and not homeopathy, which has little value here...

Or, go to www.GDX.net, the Genova Diagnostics website and use their Find A Provider to see who in your area does a NutrEval test, and go there.

In the meantime, inventory your life and avoid toxins, drink lots of clean water, eat lots of vegetables and other whole foods, and begin with the Cutler protocol, while taking a hefty multivitamin, something like Thorne Extra Nutrients, along with N-acetyl-cysteine. It's a place to start...

 

[btdt]

it is from an hour to an hour and half to fly to Ohio.... after I get to Toronto.. getting to Toronto often does me in by itself hence I don't think it is doable to see your doctor not right now maybe if I get somewhat better first I could do that...
Thank you it is a good idea.
If I could first get desensitised to some of these reaction maybe I could be more functional to do the rest.

 

[btdt]

I sent a message asking for to find a clinician hopefully there is one close.
Thorne Extra Nutrients
I do juice need to be more consistent... should being doing it now.. will do it in a minute
A lot of multi vitamins make me ill a couple days is all I can use them at best I have been like this for years... react to Vit D ... can't sleep ...songs repeat in my head ect. other too.
thanks for your help.. juice and rest time now.

 

[caledonia]

I am sure I react to phenol thru google I sorted that out long ago before dx even years ago. There may be more by now... I looked at the Ben Lynch doc guide there is one in mississauga... quite far from me still.. I am not sure thinking about it he is a homeopath not a naturopath... maybe try one close to where I live and see if he will train himself... tho I am not up to being lab rat anymore there my be no getting around it.
I have to wear a mask when I go out and it does not mean I won't have reactions travelling is becoming more difficult as time goes on. When you were tested and reacted to the compounds that affect you... did somebody go with you to get you home... when I am around some things I really can't think jerk so bad I can't walk I would not be able to get home is my worry. So would have to plan to have a care taker ... I do not live where most of my family do ...moved there are no doctors where they live I had to get out and get a doc... so I don't have a lot of people who could come hold my hand it is a drag to make somebody take time off work to do so when what your doing is so misunderstood... and hard to explain even if you could think well enough to do it and had the energy.

I am sure formaldehyde too as I can't stand clothing stores and new things I got a xmass went in the trash I can't tolerate them I will wear my old clothes thank you... I hope gift givers never read this..

Hi @btdt when you reply, can you tag me like this @caledonia, so I get your message. Otherwise, I may miss your posts.

Yes, when I travelled, I had someone drive me. I can't drive safely more than 20 minutes or so due to concentration and energy issues. The doc I mentioned is 4 hours away....

My first visit we stayed in a hotel so I was rested up for the appointment. Nowadays, we do it all in one day, as it's shorter appointment. It's a grueling trip though.

From Toronto to Ohio would be a 5 hour drive. I guess it's a tossup for that distance to fly or drive.

My BF gets tired of driving me up there. I was looking at seeing if an Uber driver could do it. It looks like they could, but it could be pretty expensive, depending on the type of car you hired.

I do see that Uber serves Toronto, so maybe that's a possibility - have Uber take you to the airport, then fly to Ohio, and take a cab to the doc.

Edited to add: Duh, take Uber to the doc. It's about half the price of a cab.

 

[caledonia]

@btdt The single best thing you could do is start taking vitamin C. (It's one of the Cutler core 4 supplements). Vitamin C helps with phase I and phase II liver detox, and helps recycle glutathione so it can be used again.

If you have trouble tolerating vitamin C, ask on the Cutler forums for ideas. I stopped tolerating it, even though I used to take gobs of it a few years ago with no issues.

I ended up with Navitas brand camu camu, which is a dried berry from the Amazon jungle, high in vitamin C.