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Cars, chemical sensitivity & how to solve this
I'm having a hard time finding a car because of reactions to the chemicals. Any ideas?
Problem one is I need a super low seat such as in a sports car to keep the neurally mediated hypotension (low blood pressure) from triggering. That limits the models I can consider.
Problem two is that I'm reacting to both the new car chemicals even in 12 year old cars and also to anything a used cars been cleaned with or perfumed with. Symptoms are inflammation style such as joint pain, muscle stiffness & pain & weakness, internal pain in area I had surgery last year. Plus nausea, headache, eyes tearing, shaky, and emotional change of becoming totally hyper (in Cadillacs), iching (saturn s-series). Symptoms vary a bit from car to car with a tendency to a "pattern" for each model. I know it's in part the new car chemicals because I've found private own cars that have never been back to a dealer for sale and still reacted.
Problem three is that I'm CFS noise sensitive so some model's low growling exhaust is too much for me.
I'm not generally that sensitive at home. I survived new carpet in the house. I use some household cleaners no problem. I react to a lot of meds and some foods and I can't burn some scented candles, and I can shop but couldn't work in a store with lots of new plastics like the dollar store.
I've tried air purifiers, expensive VOC ones, and some help a little but not enough. Actually blueair's .1 hepa smoke stop seems to do better than the pricy ones. Some dealerships have tried steam cleaning and it helps on perfumes somewhat. Cars with sunroofs that the owner says they "loved" seem to do better so it seems like airing out helps. I've been looking into aftermarket seats, but it's a whole adventure. The disablity car places I've contacted don't deal with this and just help with routine stuff like installing lifts in vans. I've tried finding sources, chat rooms, of MCS online with their experiences and haven't found ones. I saw an environmental doctor but his suggestion was to fix me with his new experiemental idea, and that he personally cleaned his car some 6 or 7 times with ozone and cleaners before it was okay. I'm unsure of trying ionizers because I'm definitely reactive to the ozone and I don't know if it ever fully leaves the car afterward?
I'm driving a 200K 1992 saturn s-series with low seat and it's chemically fine, but it's not much in the car department and not very safe. I was driving a 1989 sports car until it died a year ago and it was fine too. Curiously my mom's Cirrus seems to be chemically fine, but the seat's too high. RSXs are also chemically not bad but the seat's too high.
I'm truly baffled on what to do and it's taken over my life. I know far too many car sales people at this point in time. I've logged enough hours that I could start calling this a job. Any pointers would be appreciated!!
Problem one is I need a super low seat such as in a sports car to keep the neurally mediated hypotension (low blood pressure) from triggering. That limits the models I can consider.
Problem two is that I'm reacting to both the new car chemicals even in 12 year old cars and also to anything a used cars been cleaned with or perfumed with. Symptoms are inflammation style such as joint pain, muscle stiffness & pain & weakness, internal pain in area I had surgery last year. Plus nausea, headache, eyes tearing, shaky, and emotional change of becoming totally hyper (in Cadillacs), iching (saturn s-series). Symptoms vary a bit from car to car with a tendency to a "pattern" for each model. I know it's in part the new car chemicals because I've found private own cars that have never been back to a dealer for sale and still reacted.
Problem three is that I'm CFS noise sensitive so some model's low growling exhaust is too much for me.
I'm not generally that sensitive at home. I survived new carpet in the house. I use some household cleaners no problem. I react to a lot of meds and some foods and I can't burn some scented candles, and I can shop but couldn't work in a store with lots of new plastics like the dollar store.
I've tried air purifiers, expensive VOC ones, and some help a little but not enough. Actually blueair's .1 hepa smoke stop seems to do better than the pricy ones. Some dealerships have tried steam cleaning and it helps on perfumes somewhat. Cars with sunroofs that the owner says they "loved" seem to do better so it seems like airing out helps. I've been looking into aftermarket seats, but it's a whole adventure. The disablity car places I've contacted don't deal with this and just help with routine stuff like installing lifts in vans. I've tried finding sources, chat rooms, of MCS online with their experiences and haven't found ones. I saw an environmental doctor but his suggestion was to fix me with his new experiemental idea, and that he personally cleaned his car some 6 or 7 times with ozone and cleaners before it was okay. I'm unsure of trying ionizers because I'm definitely reactive to the ozone and I don't know if it ever fully leaves the car afterward?
I'm driving a 200K 1992 saturn s-series with low seat and it's chemically fine, but it's not much in the car department and not very safe. I was driving a 1989 sports car until it died a year ago and it was fine too. Curiously my mom's Cirrus seems to be chemically fine, but the seat's too high. RSXs are also chemically not bad but the seat's too high.
I'm truly baffled on what to do and it's taken over my life. I know far too many car sales people at this point in time. I've logged enough hours that I could start calling this a job. Any pointers would be appreciated!!
Hi
Glad your nieces had fun they sound very charming!!
Kids are a delight and a true blessing but also hard work and trying at times, my eldest was a god send that day but was amonster this morn!!
That would be good if you could help with the patches ill mail you about them.
Hope your not too tired after all this family fun and glad the turkey was good im not the best cook either so well done to your sister for trying i bet she cooks the same sa me LOL
Take Care
Samantha
Glad your nieces had fun they sound very charming!!
Kids are a delight and a true blessing but also hard work and trying at times, my eldest was a god send that day but was amonster this morn!!
That would be good if you could help with the patches ill mail you about them.
Hope your not too tired after all this family fun and glad the turkey was good im not the best cook either so well done to your sister for trying i bet she cooks the same sa me LOL
Take Care
Samantha
Hi Sam,
Nieces are in bed, so I'm finally getting a minute. Must be so hard to raise little ones with this. Sounds like a ruff patch. Hopefully it will pass soon. It will feel good too when you finally get dxed!
I haven't heard of tiger balm patches. If there's something I can do to help with those let me know (in email).
The kids do put a smile on my face those. When mommy and daddy were leaving the oldest shouted down from the play area a very polite "thanks for leaving!". Meaning then they'd finally have our attention to play with them. There are dolls lined up all along the hallway.
I'd go into the Thanksgiving story later on. It mostly now boils down to a big dinner with a turkey. No one in my family's into football, so we skip that part. My sister cooked a very good turkey for the first time. If you knew my sister's cooking you'd be impressed.
Well, hope your friends were understanding about your back and the mess, and that your back is doing better. I've only injured mine once, but I didn't enjoy it, so my sympathies.
Take Care, Cheri
Nieces are in bed, so I'm finally getting a minute. Must be so hard to raise little ones with this. Sounds like a ruff patch. Hopefully it will pass soon. It will feel good too when you finally get dxed!
I haven't heard of tiger balm patches. If there's something I can do to help with those let me know (in email).
The kids do put a smile on my face those. When mommy and daddy were leaving the oldest shouted down from the play area a very polite "thanks for leaving!". Meaning then they'd finally have our attention to play with them. There are dolls lined up all along the hallway.
I'd go into the Thanksgiving story later on. It mostly now boils down to a big dinner with a turkey. No one in my family's into football, so we skip that part. My sister cooked a very good turkey for the first time. If you knew my sister's cooking you'd be impressed.
Well, hope your friends were understanding about your back and the mess, and that your back is doing better. I've only injured mine once, but I didn't enjoy it, so my sympathies.
Take Care, Cheri
Hi
Well im not doing to well, had to walk with my two sticks for my MRI yesterday and sore today and have a bad cold!! but i had friends coming tso wanted to tidy my house and my husband is on a course so he left early, my eldest helped me but i bent down to tidy the sofa blaket and my back went on me and iv been in agony for ages iv got a hot water bottle on it but its not long before they come oh well!!
Iv been using tiger balm patches for my shoulder and back and there great but i cant get them over here or get them sent without a huge amount of money!! but im still searching.
Iv read recently about the great effects of raw vegetables and fruit and im going to get a juicer and start this slowly into my diet, its a real wake up call once you start looking at the effects of what we eat.
Somebody once said your body is like a expensive car you look after and and only put the best into it. So thats what im going to do, the only thing is im on a tight budject so its hard specially over here the shops are a rip off really.
Im Glad Thanks giving is going well your have to explain one day what Thanks giving is i keep meaning to ask my Husband!!
Dont over do it and take cover when they have a sleepover LOL
Take Care
Samantha
Well im not doing to well, had to walk with my two sticks for my MRI yesterday and sore today and have a bad cold!! but i had friends coming tso wanted to tidy my house and my husband is on a course so he left early, my eldest helped me but i bent down to tidy the sofa blaket and my back went on me and iv been in agony for ages iv got a hot water bottle on it but its not long before they come oh well!!
Iv been using tiger balm patches for my shoulder and back and there great but i cant get them over here or get them sent without a huge amount of money!! but im still searching.
Iv read recently about the great effects of raw vegetables and fruit and im going to get a juicer and start this slowly into my diet, its a real wake up call once you start looking at the effects of what we eat.
Somebody once said your body is like a expensive car you look after and and only put the best into it. So thats what im going to do, the only thing is im on a tight budject so its hard specially over here the shops are a rip off really.
Im Glad Thanks giving is going well your have to explain one day what Thanks giving is i keep meaning to ask my Husband!!
Dont over do it and take cover when they have a sleepover LOL
Take Care
Samantha
Hi Samantha!
Congrats on your anniversary! It's nice that you got out together - I assume without the kids! Thanksgiving is going well here. I think the nieces are sleeping over tomorrow night - so someplace around Wed I'll be awake again. We have a few games in mind to keep them busy.
Did I mention CFS patients often comment that alcohol no longer goes well? There are so many of these little things that are hard to remember them all when tryng to describe symptoms of CFS. It's a vasodialator or vasorestrictor, I don't remember which, so it tends to trigger the dysautonomias where the vascular system (vaso) isn't sending the blood around well. It's also why very hot showers aren't recommended. I personally seem to tolerate alcohol just fine. Must be because I don't normally drink so it doesn't matter to me at all :-).
I haven't heard any specific feedback from anyone on probiotics before, so I'm looking forward to trying the primal defense meself mentioned. Hopefully it will help. I have heard good things about that product generically a lot.
For not sleeping there's lots of possiblities. I'll mention one obscure one since we're talking food sensitivities. There are several foods that keep me up at night. The most memorable was Fantastic Brand falafal mix of all things. Nothing on the ingredent list to make it noteworthy. I had leftovers my mom had made, and heated up a couple one night and didn't sleep. Then a few days later heated a few more, and didn't sleep. And a third time. The nights in between I slept fine. It felt like I'd filled up on caffine intense chocolate. It was too strange. Had another brand of falafal and they were fine. I've seen it with a couple of foods (can't remember the rest). It's low probability but any connections are worth noting. Should have seen me trying to explain this to my doctor.
Hope tonight was a sleep night. Talk to you soon!
Congrats on your anniversary! It's nice that you got out together - I assume without the kids! Thanksgiving is going well here. I think the nieces are sleeping over tomorrow night - so someplace around Wed I'll be awake again. We have a few games in mind to keep them busy.
Did I mention CFS patients often comment that alcohol no longer goes well? There are so many of these little things that are hard to remember them all when tryng to describe symptoms of CFS. It's a vasodialator or vasorestrictor, I don't remember which, so it tends to trigger the dysautonomias where the vascular system (vaso) isn't sending the blood around well. It's also why very hot showers aren't recommended. I personally seem to tolerate alcohol just fine. Must be because I don't normally drink so it doesn't matter to me at all :-).
I haven't heard any specific feedback from anyone on probiotics before, so I'm looking forward to trying the primal defense meself mentioned. Hopefully it will help. I have heard good things about that product generically a lot.
For not sleeping there's lots of possiblities. I'll mention one obscure one since we're talking food sensitivities. There are several foods that keep me up at night. The most memorable was Fantastic Brand falafal mix of all things. Nothing on the ingredent list to make it noteworthy. I had leftovers my mom had made, and heated up a couple one night and didn't sleep. Then a few days later heated a few more, and didn't sleep. And a third time. The nights in between I slept fine. It felt like I'd filled up on caffine intense chocolate. It was too strange. Had another brand of falafal and they were fine. I've seen it with a couple of foods (can't remember the rest). It's low probability but any connections are worth noting. Should have seen me trying to explain this to my doctor.
Hope tonight was a sleep night. Talk to you soon!
Thanks a lot. Hopefully I can tolerate the primal defense, because I'd like to try it, and see if it does the same for me. I'd tried the powdered probitics but maybe seen a little change, maybe. I'd tried an papaya enzyme product and it made any reflux considerably worse, so I was puzzled by that. Maybe if i tried other brands or the seeds directly, since I figure the better you digest the better your body takes in nutrients.
It's funny that you say FM people like details, because I have seen the opposite and find I usuallly ask questions people haven't even asked themselves. (I had CFS with some FM elements, but it's definitely not FM. Maybe that's the difference since I know mostly CFS patients.)
I wish I understood better what improvement you saw, but I guess that's a very are thing to put into words. Hopefully I'll know after trying it. Now if I can only find the bottle I bought when I get back home... Do you stilll get sick when you go off them? What prompted you to try it - did someone else have a good experience with it too? (Okay, more with the questions, that's what's easier about direct conversation...!)
Thanks again for all the details!! That really is so helpful. If you have any other suggestions on any technque please do let me know :-).
It's funny that you say FM people like details, because I have seen the opposite and find I usuallly ask questions people haven't even asked themselves. (I had CFS with some FM elements, but it's definitely not FM. Maybe that's the difference since I know mostly CFS patients.)
I wish I understood better what improvement you saw, but I guess that's a very are thing to put into words. Hopefully I'll know after trying it. Now if I can only find the bottle I bought when I get back home... Do you stilll get sick when you go off them? What prompted you to try it - did someone else have a good experience with it too? (Okay, more with the questions, that's what's easier about direct conversation...!)
Thanks again for all the details!! That really is so helpful. If you have any other suggestions on any technque please do let me know :-).
How much improvement did those give you, from what point to what point?
The best way I can answer you is that it gave me an overall feeling of well being compared to what I was feeling.
Did you have to play around with them, of was it just the one product Were there others, the actual probiotic pills too?
I took acidophillus for a long time in refrigerated powder form. I did notice some difference in the way I felt but not much. I started using the primal defense acording to the directions. It was within a week that I noticed a difference in how I felt.
How long to see changes?
I took several weeks to really see major improvements. I stopped taking it for a few days because I thought I was in a remission and didn't need them but ........wrong! I started getting real sick and sensitive again so I went back on them and by the next day I was feeling much better and I have stayed on them ever since. I have used this product about a year and a half.
Enzymes I use- fresh seeds from a papya (drie the seeds and place in a pepper mill and use on food tastes lightly peppery) & natural plant enzymes by "Now" company
I've used some combo enzymes, not sure of the brands but they contained natural enzymes-no weird stuff.
Your intense need for detail reminds me of myself. Fibro people like details :-)
The best way I can answer you is that it gave me an overall feeling of well being compared to what I was feeling.
Did you have to play around with them, of was it just the one product Were there others, the actual probiotic pills too?
I took acidophillus for a long time in refrigerated powder form. I did notice some difference in the way I felt but not much. I started using the primal defense acording to the directions. It was within a week that I noticed a difference in how I felt.
How long to see changes?
I took several weeks to really see major improvements. I stopped taking it for a few days because I thought I was in a remission and didn't need them but ........wrong! I started getting real sick and sensitive again so I went back on them and by the next day I was feeling much better and I have stayed on them ever since. I have used this product about a year and a half.
Enzymes I use- fresh seeds from a papya (drie the seeds and place in a pepper mill and use on food tastes lightly peppery) & natural plant enzymes by "Now" company
I've used some combo enzymes, not sure of the brands but they contained natural enzymes-no weird stuff.
Your intense need for detail reminds me of myself. Fibro people like details :-)
Im certailnly noticing the links between diet and how my body feels, tiredness i found was linked to eggs and again on tuesday i went out for a meal as it was my and my husabnd anniversary, and i had all sorts and a bannah fritter at the end and i know some of that made me feel sick bloat and extreme tirdness yet could not sleep i alos had two classes of wine which i had not touched in a year but gave it ago i felt awfull for days afterwards, i also notice that if i dont sleep well and well for me is a good 5-6 hours im happy with that my body and the pain level really goes down hill, i have not pin pointed yet why i sleep better some nights then others as i am a creature of habit LOL and my meds are the same so im not sure yet!!
Happy thanks giving
Samantha
Happy thanks giving
Samantha
My diet is pretty well adjusted. I've had a lot of time to play with it, and supplement adjustments and using organic and simple ingredent foods.
I'm trying to get an idea of how the probiotics worked for you, since I haven't tried them much. How much improvement did those give you, from what point to what point? Did you have to play around with them, of was it just the one product (defense - I can't think of the name at the moment but I have a bottle at home). Were there others, the actual probiotic pills too? How long to see changes? Was it gradual or most at the beginning of using them? Also, what enzymes did you use? I hope you don't mind my asking again, but this is really where I haven't had experience yet. Thanks.
I'm trying to get an idea of how the probiotics worked for you, since I haven't tried them much. How much improvement did those give you, from what point to what point? Did you have to play around with them, of was it just the one product (defense - I can't think of the name at the moment but I have a bottle at home). Were there others, the actual probiotic pills too? How long to see changes? Was it gradual or most at the beginning of using them? Also, what enzymes did you use? I hope you don't mind my asking again, but this is really where I haven't had experience yet. Thanks.
I know for a fact that the probiotics were the icing on the cake!!! I can tolerate alot more but I avoid things that use to make me real sick because I don't wan't to flare up my health problems. I did the eliminations first beore using the probiotics but I continue to do both. (I do not use yogart due to the milk in the product) Bedridden to active is what I went through too.
I do not eat breads, pizza, yeast foods, milk products (I am able to tolerate a treat of some occationally but I do not push it) If I eat pizza I will take probiotics before and after eating it to avoid reactions such as swelling everywhere, pain increase, nausea, insomnia to name the main trouble.
I increased my protein this is a big help too. I eat 2 eggs or chicken breast, tuna etc for breakfast by itself. Lunch I try to eat a good source, lean source unless its peanutbutter :-) Snacks I can eat hard cheese but no soft cheese (its made different and makes me ill) Dinner again a good lean source of protien. I also cleared my hypoglocemia doing this and the nasty fluttering heart -attacks. I avoid sugar but I love cookies! Be sure to eat lots of fresh fruits and veggies obviously.
I can no longer tolerate many vitamins (calcium is one of them) so I try to dring fuit and veggie juicers to make up for the difference. I eat whole grains (no wheat) But my energy level is still doing ok. I also use enzymes, especially if I am eating where I can't controll the contents. I make most of my food from scratch to avoid all the chemicals and additives.
I hope there is something in this information that may help.
I do not eat breads, pizza, yeast foods, milk products (I am able to tolerate a treat of some occationally but I do not push it) If I eat pizza I will take probiotics before and after eating it to avoid reactions such as swelling everywhere, pain increase, nausea, insomnia to name the main trouble.
I increased my protein this is a big help too. I eat 2 eggs or chicken breast, tuna etc for breakfast by itself. Lunch I try to eat a good source, lean source unless its peanutbutter :-) Snacks I can eat hard cheese but no soft cheese (its made different and makes me ill) Dinner again a good lean source of protien. I also cleared my hypoglocemia doing this and the nasty fluttering heart -attacks. I avoid sugar but I love cookies! Be sure to eat lots of fresh fruits and veggies obviously.
I can no longer tolerate many vitamins (calcium is one of them) so I try to dring fuit and veggie juicers to make up for the difference. I eat whole grains (no wheat) But my energy level is still doing ok. I also use enzymes, especially if I am eating where I can't controll the contents. I make most of my food from scratch to avoid all the chemicals and additives.
I hope there is something in this information that may help.
Can I add to my questions... With the probiotics or anything for that matter, have you been able to add back foods that were significantly problematic before? I get huge benefits from eliminating things (bedridden switched to very functional), however, there's just so much I can remove. I've been able to now eat a smaller amounts of some not as reactive foods, and the big ones the reactions don't last as long, but mostly I haven't known many people who could get changes in sensitivities back to normalish (and they didn't have straight CFS). Thanks for your ideas!
Also, spent tonight at an owners of electric car's meeting. Doesn't seem like a likely solution for me - but very interesting topic. Two days before Thanksgiving and there had to be 20 plus people there.
I also found eliminating allergins (for me several foods, and some minerals such as calcium pills) made a huge difference in all my symptoms across the board. Do you think it was the probiotics more than the eliminations that did it for you??
(I'm not young, and have had this for 10 years. I do the balance part very well.) I didn't see any difference with b-complex vitamins (haven't tried shots or sublingual). Along with my probiotics question that I'm interested in how well it worked for you, is there anything else you would suggest? I've tried many things over the years, some with success but it's always good to hear what's worked for others.
(I'm not young, and have had this for 10 years. I do the balance part very well.) I didn't see any difference with b-complex vitamins (haven't tried shots or sublingual). Along with my probiotics question that I'm interested in how well it worked for you, is there anything else you would suggest? I've tried many things over the years, some with success but it's always good to hear what's worked for others.
I had horrid sensitivity problems. It seemed I couldn't go anywhere without feeling sick to my stomach, breathing problems, increase pain, confusion, magnified hearing, vision disturbance and on and on. Paints, glues , wallpaper, carpet, stores, in cars, buses etc. I even got ill in my own home so I spent alot of time outside. I used B complex to tone down some of the reactions and used all kinds of vitamins to build up my immune system. I got some relief but nothing like I got from probiotics and eliminating items and food that I was allergic to. Allergies if not corrected create more allergies, its our immune system reacting to trying to fight off allergins. I'm not cured but I went from about 1-2 hours of normal living daily to running my own business and teaching on the side. I can put in a full day and a full week (I pace myself , try to eat good and get sleep- Being able to sleep is another story.) For me I feel the probiotics made the largest difference for me but I have tried so many things over the yrs there is no one cure for anything. Everyone is so different too. Don't get me wrong, I am not cured but I know my limitations and I respect them. If your a yong person this is a very difficult thing to face. When we are young we are invinsible and don't understand limitations but this is essential to getting better.
Thanks for the ideas. In reality I can't wait until I cure my cfs to get a car. I'm driving a 200k mile '92. Although i've improved over the years with various things, I'm not going to shift this part of me instantly - and the car can't wait until I figure it out.
Curiously I don't get an increase in any of my cfs symptoms. It's a reaction to chemicals, similar to MCS, and not reactions that I've gotten in any large amount before. I can remember back and I always disliked my dad's car, and didn't feel well in it, so apparently I had the problem, before I knew it. (Still had my old car then.)
The prime defense and probiotics helping with sensitivity is interesting. I haven't heard of anything actually reducing sensitivity before, which I would love to do. Can you describe more about that. What sensitivities and went down my how much? I still need to figure out the car problem though before I get me fixed.
Curiously I don't get an increase in any of my cfs symptoms. It's a reaction to chemicals, similar to MCS, and not reactions that I've gotten in any large amount before. I can remember back and I always disliked my dad's car, and didn't feel well in it, so apparently I had the problem, before I knew it. (Still had my old car then.)
The prime defense and probiotics helping with sensitivity is interesting. I haven't heard of anything actually reducing sensitivity before, which I would love to do. Can you describe more about that. What sensitivities and went down my how much? I still need to figure out the car problem though before I get me fixed.
Our bodies fight pollution and chemicals all day long every day. Fibro people don't have much of an immune system so what do we do to fight it?? We react with breathing problems, nausea, heartburn, increased pain etc so I say do your best to build your immune system, this is my theory anyway.
Thanks meself. I don't generally react that much to molds. For instance, my current car is very moldy and it that doesn't bother me. I also don't have a candida/yeast problem that I've been able to determine. It's definitely a chemical... I have thought about it - it's a good suggestion. Wish I new how to manage the problem.
if you have candida (fungal/yeast) mold will be a serious problem as well as the fuel chems etc. Older cars are usually moldy in the insulation. Sometimes these molds aren't even something you can smell. Just a thought to consider.
"I started to look at your website last night (found the link while going through my email from while away) and it looks great, very active too."
Thanks Curls. I actually just started the website and I'm doing my best to post the latest research on there and especially the latest treatments and a physicians list. The best weapon to fight CFS and fibro is to stay on top of it. I'm always printing out new information and giving it to my physician and he appreciates it.
Thanks Curls. I actually just started the website and I'm doing my best to post the latest research on there and especially the latest treatments and a physicians list. The best weapon to fight CFS and fibro is to stay on top of it. I'm always printing out new information and giving it to my physician and he appreciates it.
Not sure what error your talking about... all the data was useful to me - since it gets my brain thinking... and I hadn't heard something like that for gasoline before. I wonder if it's different for chemcials vs foods? That's pretty amazing that you could be tolerant again. If any more thoughts come to you...please let me know! I have another idea I'm going to try out today. Telling all these sales people though is a riot. Never sure whether to hide under the table in embarrasement or feel proud that I'm entertaining them with one of the most different clients they've ever had.
I'm sorry to hear Elisa/act closed too. I knew they results didn't fit well for enough people to "prove" it in a classic sense, but I knew it had fit for some people and been of great benefit. They must have been onto something but not tweeked it quite right or narrowed down enough to the right subgroup. My the time I considered it, it would have been out of pocket and was already being told if 'didn't work' so I opted against. I'd already done some elimination of my own...
There are so many treatment ideas with this illness that I think are on the right track, but don't find the right subgroup to adequately prove them. Hopkins' drugs for NMH were miraculous in maybe 15-20% (maybe less) of people who tried them. But the whole lab was closed once the testing showed non-significant results overall. i.e. the other 80% messed it up for figuring it out better for the 20% they would have helped. It's so frustrating. And my doctor's (two cfs experts) had a large gut sense that they wouldn't work for me and not to bother, so the subgroup can be identified! (I had tried licorish root and salt tables to no avail which reinforced it.)
I started to look at your website last night (found the link while going through my email from while away) and it looks great, very active too. I had to go to bed, so didn't get a chance to see much at all. I'll be back!
I'm sorry to hear Elisa/act closed too. I knew they results didn't fit well for enough people to "prove" it in a classic sense, but I knew it had fit for some people and been of great benefit. They must have been onto something but not tweeked it quite right or narrowed down enough to the right subgroup. My the time I considered it, it would have been out of pocket and was already being told if 'didn't work' so I opted against. I'd already done some elimination of my own...
There are so many treatment ideas with this illness that I think are on the right track, but don't find the right subgroup to adequately prove them. Hopkins' drugs for NMH were miraculous in maybe 15-20% (maybe less) of people who tried them. But the whole lab was closed once the testing showed non-significant results overall. i.e. the other 80% messed it up for figuring it out better for the 20% they would have helped. It's so frustrating. And my doctor's (two cfs experts) had a large gut sense that they wouldn't work for me and not to bother, so the subgroup can be identified! (I had tried licorish root and salt tables to no avail which reinforced it.)
I started to look at your website last night (found the link while going through my email from while away) and it looks great, very active too. I had to go to bed, so didn't get a chance to see much at all. I'll be back!
Hi Curls,
Excuse the error... I had terrible brain fog yesterday when I wrote that and misunderstood your post.
I'm sorry to hear about ELISA/ACT. I checked out their website and it says that they closed last year in October ! I had done testing with them several years ago. I knew I had problems with gasoline and they caught that. They also found some food allergies and I learned that they were correct on those as well.
Hi Platelet, thanks for the reply. No problem with gasoline here. I didn't know Elisa/act did those chemicals. However, I thought it was no longer being covered by medicare because it wasn't proving itself to be accurate? Some alternative doctor told me that. I haven't had any food I've avoided, get better on it's own. Is it diff with chemicals? If I knew exactly what chemicals (and it seems to be quite a few) it might make it easier to sort though. I wasn't in new cars except totally rarely for the last 10 years, so not sure if avoidance would work? Do you have any experience with any of these questions? I really can't afford to work on and wait until I fix me to solve this problem, even though it would be nice to fix me : ). It's great that there are success stories with the MP!
It doesn't seem like anyone else on this site is having chemical sensitivity issues. And for the MCS people it's mostly from gas fumes, not from 12 year old cars themselves.
It doesn't seem like anyone else on this site is having chemical sensitivity issues. And for the MCS people it's mostly from gas fumes, not from 12 year old cars themselves.
I have a chemical sensitivity to isopropyl ether and 3-Methyl Pentane, both of these chemicals are in gasoline. The lab that tested me (ELISA/ACT), recommended that I avoid car exhaust for 6 months. I did and now I'm better... but I'm also on the MP and believe that protocol deserves some of the credit. There is one member on the MP who has MCS and she recently took a break from the protocol and was able to go hiking in Colorado and she's been feeling great.
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