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Post by jmanuel on Apr 19, 2011 11:53:30 GMT -5
Hi Namid, I'm continuing our conversation from the other board Thank you for the wealth of information Namid. Wow, there is a lot to consider here. The other antibotics that I know I am not able to tolerate are: Cephalexin and Vibramycin Were you able to reintroduce a lot of the foods that bothered you in the beginning? I'm not really sure how to determine what is good and what is bad for me. There are so many possibilities, right? Is it a histamine problem? Is it a salicylate intolerance, or a glutamate intolerance. Or all three!!!!! Yikes! My deodorant has the following ingredients: Rose water, coconut fatty acid cream base, organic aloe vera, natural grain alcohol, calendula oil, vitamin e, calamine powder, oils of arnica flowers, camomile, sandalwood, patchouli, jasmine, fir, vanilla, cedarwood and rose. I also noticed that my new Natural Tom's toothpaste is somehow bothersome to me it contains: calcium carbonate, water, glycerin, sodium bicarbonate, xylitol, chondrus crispus (carrageenan), natural flavors, sodium lauryl sulfate, commiphora myrrha resin extract, propolis cera From what I've learned when one has a salicylate intolerance, mint is a problem, and my toothpaste is mint flavored. The deodorant is full of herbs which could indicate a salicylate issue as well. What do you think? Histamine intolerance is interesting too. I had a vitamin blood panel done and my vitamin C came up very deficient. I wonder if this is a connection to the being sensitive to mold, tomatoes, and old food? For some reason my body is not absorbing vitamin C, even though I eat a ton of foods containing it as well as supplements. Jill
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Post by Deleted on Apr 20, 2011 2:59:48 GMT -5
Hi Jill, It is nice to meet you here again and to continue our conversation. How long is it ago that you took the other antibiotics? Was it just before you took the quinolones? During the first months I noticed I reacted against more and more food but the reactions became less intense and I was able to figure out what was safe and what not. If I am able to have no exposures from smells, food, chemicals… I am able to recover to a certain amount, even if it is getting each time after a bigger event more difficult. But keep in mind that it is many, many years ago that I took the drug and I was not able to stay safe and I had bigger relapses after exposure to solvents and other things. So don’t compare yourself with me from the time frame. Yes, there are several possibilities why we have problems with food and other substances. What I would do in your case is to look at the lists like histamine and salicylate and absolutely avoid all which are mentioned to be high in it. I would be careful with the others, too. Because you reacted against the substances in the deodorant, I fear you may have problems with polyphenols. They are from the chemical structure similar to salicylates therefore the tables for salicylates are helpful. The problem is that phenols are able to activate the TRPV receptors. The “V” stands for vanillin. You may think it sounds very friendly, but vanillic substances are hot and spicy like in chilli or pepper. The receptor releases substances, which are able to create pain and inflammation Several of the substances of the deodorant are able to activate this specific receptor. So stay away from essential oils of all kinds (spices, herbs …). Be careful when you come in touch with flowers. The smell of them may cause problems. I had problems especially with jasmine, lavender, roses… There is another receptor, which belongs into the TRP family, too. It is the TRPA1 receptor. It is activated through food like cabbage, mustard, garlic, onions and aldehyds, which are substances in many fragrances naturally or in perfumes. This receptor is activated through coldness and if too much calcium enters a nerve cell, which can happen in our cases. So please all of you, who are reading this, pay attention to the activators of this receptor. I watched people coming and going in the scene and we had several cases, who had problems with coldness and garlic. So this may help you to find out, if you belong to this group. If you can’t tolerate toothpaste, try to brush your teeth with salt. Bacteria do not like salt and it can be helpful if you have a sore throat, too. For such products you will find information if you search for fragranced free products or MCS. Maybe others can chime in, who already have found such products in the USA. I looked up myrrh. It is likely that you have problems with that, too. I am not so much an expert about supplements and vitamins etc. I hope Beebs will chime in but I assume that your body may need very much vit C so the level is low. Histamine plays a role in old food and tomatoes, too. Mold, the herbs in deo and toothpaste show more in the direction of problems with the TRPV receptors. There is a connction between histamine and the TRPV1 receptor: …”We thus conclude that histamine activates TRPV1 after stimulating the PLA2/LO pathway, leading to the excitation of sensory neurons.”(Kim et al., 2004) I hope I have answered your questions. It is not easy to find the right way and it takes time, luck and a good observation of your own body and your environment. I am thinking of you. Namid Reference Byung Moon Kim, Sang Hee Lee, Won Sik Shim and Uhtaek Oh Histamine-induced Ca2+ influx via the PLA2/lipoxygenase/TRPV1 pathway in rat sensory neurons Neuroscience Letters Volume 361, Issues 1-3, 6 May 2004, Pages 159-162 www.citeulike.org/group/6133/article/3067688
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Post by Deleted on Apr 20, 2011 4:26:25 GMT -5
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Post by jmanuel on Apr 22, 2011 12:55:29 GMT -5
Hi Namid, Thank you for the links. I'm wondering if the food/chemical sensitivities are also related to the gut. From what I understand if the GI can heal, then the intolerances can heal as well. I have a GI appointment next week, so I hope to get some clues as to what is going on. Did you have GI issues as well? How did you treat and resolve them? My symptoms are very worrisome. I cannot even go outside of my house without reacting to the various smells everywhere around me. I get these burning inflammation hot spots on my head and brain fog whenever I'm exposed. I really hope these intolerances calm down. I'm going to try an elimination diet. Tell me what you think. Does it seem to be a good approach? It eliminates additives, salicylates, amines and glutamates. failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/Thanks again for all your help. Jill
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Post by beebs on Apr 22, 2011 14:26:19 GMT -5
Hi Namid, Thank you for the links. I'm wondering if the food/chemical sensitivities are also related to the gut. From what I understand if the GI can heal, then the intolerances can heal as well. I have a GI appointment next week, so I hope to get some clues as to what is going on. Did you have GI issues as well? How did you treat and resolve them? My symptoms are very worrisome. I cannot even go outside of my house without reacting to the various smells everywhere around me. I get these burning inflammation hot spots on my head and brain fog whenever I'm exposed. I really hope these intolerances calm down. I'm going to try an elimination diet. Tell me what you think. Does it seem to be a good approach? It eliminates additives, salicylates, amines and glutamates. failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/Thanks again for all your help. Jill Hi Jill, until Namid responds. Leaky gut, inflammation, enteric nervous system includes neurotransmitters in the stomach, enzymes (stomach, pancreas, liver), pancreas, etc.. are also involved, . I suffer similar to you and Namid, and have been on a very limited diet since 2002. Its only for the last two weeks, that I have been able to add some foods to my depleted diet. Will write about it in another thread. The enteric nervous system seems to be damaged a functional level. No reliable tests that I know of. It will heal, but meanwhile, prevention and attention to diet, perhaps eating foods lower down the food chain, such as what babies would eat, once they wean off lactating. Foods such as sweet potatoes, bananas. Best to avoid raw foods and salads for the time being A good site that explains the enteric nervous system: www.psyking.net/id36.htmAs for the MCS, it involves lifestyle modification, avoid detergents, home cleaning products, make up, solvents, etc.. Gaba A receptors are implicated in the stomach too, and that is why, SSRIs/Benzos can and do cause disturbance in the digestive system, eventually!! Luckily, my digestive troubles, allergies, MCS, didn't expand to my moods, nor do I suffer from CNS symptoms. One interesting fact, is that since I have been able to add to my diet, there is improvement in cognition. Some interesting articles: www.sciencemag.org/content/214/4517/193.abstractInstead of restricting your diet, it may be wise to listen to your own body, regardless of expert's opinion. It could deplete of important nutrients. I had no choice but to eat what I could tolerate, and am glad I did. Gluten, can be tolerated by some, others not.
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Post by jmanuel on Apr 22, 2011 17:20:08 GMT -5
Hi Beebs, Thank you for the info. Glad to hear you are improving! I know I have a very long road ahead of me, but I'm staying positive. How did you figure out your intolerances? What are they? I seem to be sensitive to everything! I'm a little afraid to eat anything at the moment. I hear that epsom salt baths are good to clear out the toxins in our bodies. Has anyone had luck with that after having a reaction? Do you have any recommendations on vitamins? My C level is so very low, but how can I take supplements with all of these intolerances?I'm hoping to find a good multivitamin that I can tolerate. Early on, I tried a B complex and I had eye and headache pains after taking it. It's so difficult to figure all of this out. I'm guessing that I am intolerant to salicylates, glutemates, and polyphenols. I knew immediately when I could not tolerate any processed foods, lunch meats, fish sauce, tomatoes, veggie stock that was stewed for hours, smell of mold, eating leftovers, bath products, mint toothpaste, detergent. Thanks to you, Namid, this board and a lot of research I'll slowly find my way Jill
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Post by Deleted on Apr 23, 2011 5:55:29 GMT -5
Beebs, thank you that you have answered Jill’s questions and thank you both for the good links. Now to your questions, Jill. In my case symptoms can flare up in all parts of the body, but especially in my brain. I assume it depends where the weak points/ damage done by the quins etc are. In the article provided by Beebs it is explained that there is a connection between the digestive tract and the brain. There are similar neurotransmitters and receptors. So if you are able to calm down the digestive system it will have an impact on the brain and the other way round. Jill, it is not easy to find all the triggers at once but if time goes by you will get a better overview what is safe and what not. I think the elimination diet is good from the link you gave, but be careful if you eat things like cabbage, garlic, onions…they are able to activate the TRPA1 receptor. If you have made good experiences, you may slowly test them later. I would try only a tiny little bit of chives. If the taste is very strong and it stays for a longer time in your mouth, I would not eat it. Epsom salt/magnesium is good because it is able to inhibit the NMDA receptor, which is the “gas pedal”. I remember that several people from the scene found Epsom salt baths to be helpful. If you came in touch with solvents or other chemical smells, take some fat like butter into your mouth for a while and spit it out afterwards. Often these chemicals connect with the fat and you can get rid of them this way to a certain amount. In my case it has protected my digestive system a little bit more. Another point which comes into my mind: You seem to react very quickly if you have an exposure. Maybe you can smell at food and can decide this way, if it is safe. In my case it functions, but it depends on your sensitivity. Another method, which I used was to put food at my pulse. The substances enter the body through the skin and I would have immediately brain fog or tremors. If I noticed a reaction I would stay away from the food. But it is not exact. It can be that you experience no reaction but it may not be safe when you eat it. Namid
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Post by jmanuel on Apr 23, 2011 13:16:46 GMT -5
Hi Namid, These tips are really helpful. I owe you and Beebs my life!!! I have noticed that when I smell or touch things I often react to them. I feel I am sooooo extremely vulnerable to everything around me. Does it calm down? Were you ever this sensitive in the beginning? I handled some basil yesterday and had my brain pain increase. Even just the aroma caused a reaction. When I smell a jar of peanut butter I get a mild uneasiness feeling as well. Peanut butter has a medium level of Sals in it. My husband made coffee and the smell made me sick too. The reaction to basil and mint toothpaste definitely confirms a salicylate intolerance. I purchased a ton of products from Cleure who specialized in Salicylate, gluten free products and I am still reacting to them! I really don't know what to do. I hope you don't mind me asking about these products and what you think I could be reacting to. The Cleure shampoo has these ingredients: Deionized Water, Decyl Glucoside, Lauramidopropyl betaine, cocamide MIPAm, Glycerin, Hydroxypropyl Guar, Caprylyl Glycol, Vitamin E, Potassium Sorbate Cleure hand and body soap: Purified Water, Decyl Glucoside, Cocamidopropyl Hydroxysultaine, glycerine, Vitamin E, Potassium Sorbate, Guar Gum, Citric Acid, sodium Benzoate If I am salicylate intolerant, that means I can't use any product with plants in them, right? But, what am I reacting to in the cleure items. Is it the citric acid? Vitamin E? I'm at a loss. I tried to look up the NOW products that you suggested, but they contain aloe which could cause some problems for me, I think. If I am truly intolerant to glutmate, then all corn products are activators. Is this correct? Maybe the vitamin E in the Cleure products are no good for me? I just don't know. I think our intolerances are very similar, no? What are your intolerances? Thank you again for all your help Namid. I'm so sorry if I keep going on, and on Jill
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Post by Deleted on Apr 24, 2011 4:44:04 GMT -5
Hi Jill, you are welcome. It is good, if I can help you and maybe our conversation maybe helpful for others, too. Yes, I had/have reactions when I touch something. The reason for this is that the TRPV receptors are in the skin, too and they will warn you that something is wrong. The problem is that the threshold for activation is now much more lowered and you react now to substances, which before being floxed had never been a problem for you. I am sure you have made that kind of experience before. If you touch your arm with your finger, it will not hurt. If you have a wound and you touch it, it will give you pain. In addition the area around it will be much more sensitive, too. This is how the TRPV functions. If you stop touching the area, the pain lessens and after some time the wound and the whole area heals. Therefore avoidance is so important. I have felt very vulnerable too and I asked myself how I shall survive it because the things against which I reacted had been so many. But I survived and the nervous system, body calmed down. So just know it is possible. In 2008 I had a huge relapse after I had small exposures, which I would have been able to shake off after a short time in former times. I became very sensitive and I had huge problems with the smell of coffee, too. So you are not alone with your experiences. Stay away from all herbs. We came so far that I often eat alone and the others eat after I have finished and I hide in my bedroom. Now to your products: In the soap there is benzoate and that surely gave a reaction to you. Be very careful because it is often used in fluid products as preservative. Pay attention for it in medical drops etc. too. E- numbers: 210-219 benzoates 230-239 phenols 240-249 nitrates 510-519 chlorides and sulphates You can find more at en.wikipedia.org/wiki/E_numberNow to basil. I found a good database at www.food-info.net/uk/products/spices/basil.htmFood-Info.net> Food Products > Spices …”Main constituents The essential oil (less than 1%) is of complex and variable composition. Within the species, several different chemical races exist, and furthermore climate, soil and time of harvest influence not only the amount but also the composition of the essential oil. The most important aroma components are 1,8 cineol, linalool, citral, methyl chavicol (estragole), eugenol and methyl cinnamate, although not necessarily in this order; in fact, hardly any basil contains all of these compounds in significant amounts. African species often contain camphor. Further monoterpenes (ocimene, geraniol, camphor), sesquiterpenes (bisabolene, caryophyllene) and phenylpropanoids (methyl eugenol) can be present in varying amounts and strongly influence the flavour.” In the shampoo I assume it can be the glycol and Lauramidopropyl, but I have to look it up. A few people from the scene had problems in the past with aloe. To be honest, I don’t know the NOW products, maybe you mix me up, but I am forced to avoid many plant product especially if the are against infections, inflammations…. And like you I have problems with corn. Be careful it is often used as a filler in many products and supplements. The same with soy.
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Post by Deleted on Apr 25, 2011 2:01:51 GMT -5
I have looked up some of the chemicals of the shampoo but I found no real good informations. At www.mcsbeaconofhope.com/42_common_toxic_chemicals_and_th.htm42 Common Toxic Chemicals and Their Effects there is a list of common toxic chemicals, where I found the floowing info: Glycol ethers antifreeze, paint, glue, adhesives, sealants, caulking compounds, printed circuit boards, dyeing, inks reproductive poisons, red blood cell damage, liver damage (in animals: fetal growth retardation, skeletal defects, testicular lesions) (49)
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Post by jmanuel on Apr 25, 2011 8:27:15 GMT -5
Hi Namid,
Sorry for the delayed response. I have not been feeling well these days. I have resorted to only using baking soda to clean my hair, brush my teeth, and wash the tub. I just can't tolerate anything else. Did you have to go to this extreme? I am also noticing that electronics are bothering me as well. I went outside yesterday and reacted to flowers as I walked by. Not really eating much either. What does your diet consist of? Do you get enough nutrition?
I have to know, does this level of sensitivity change or get to a better level of tolerance? Or am I doomed to living with this level of tolerance forever. Can I do anything else to help it? Are you able to tolerate the smell of coffee now? Are you able to live a normal life? How long was your recovery in 2008 from the big episode that you had?
I feel the depression sinking in as well. Head fog, fear is overtaking me. What can one in our condition do? We can't take anti-depression drugs to help, right? I don't see how I could tolerate any medication. How did you handle this?
I'm thinking about seeing an alternative doctor that knows about MCS and food intolerances. My normal primary care physician wants me to see a psychiatrist and doesn't believe any of my symptoms are real. Have you ever tried any chelating or detoxing heavy metals treatments? I really do feel that I am dealing with a candida infection which could be contributing to the MCS. Did you have a problem with yeast after taking the FQ?
Thank you for looking up all the info on the products. You have helped me tremendously. Feeling really hopeless right now. Sorry to be a downer.
Jill
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Post by Deleted on Apr 25, 2011 10:36:06 GMT -5
Hi Jill, what you are going through right now is very extreme and I think everyone in your place would feel down. The depression is coming "naturally" through the many exposures. So in a way you are poisoned and it is not Yourself! It is now 22 years since I took the drug. At the beginning I was given benzoes. I think I took 4 pills over several weeks of them but they were not helpful, in contrast. I tried drops from herbs, but I reacted against them, too and I have problems with the filling materials like corn, soy in many drugs, supplements etc. Therefore I was not able to try out more of them. As you can see I have survived. It was not always easy especially if I had pain or inflammations, infections...but I was able to overcome it. The most important thing is that you reduce exposures and you are going now in the right direction. Great that you have been thinking of baking soda. Many MCS patients are using it. Try to find a good environmental medicine doctor in your area ( may be difficult) and pay attention to your money. some to try to get a lot of money from their patients! Not all treatments and methods are okay.
I am able to tolerate rice, different kinds of meat, Gouda (melted),butter, eggs, bananas (try cooked pears, others are able to tolerate them better than bananas),potatoes, salt, bread - leaven; my huge problems have been always fruits and vegetables, but I seem not to have any signs of malnutrition, which surprised all members of my family including me. For those, who are reading my diet, you all have to listen to your own body and find your own way. It is very likely that you will have to live with sensitivites to special things/food, but it is very likely that you will see some improvement as you continue to go your own way. So keep your hope!
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Post by msnycgal on Apr 25, 2011 21:07:09 GMT -5
Hi Jmanuel: I thought I'd chime in. I'm sorry you're feeling down and blue. How long ago did you get floxed and was this your first floxing? I used to have chemical sensitivities and food intolerances after I was floxed 2 years ago. I ate only a handful of foods for the first 3 months. No wheat, no sugar, hardly any dairy except for yogurt and butter, no chicken, I could not tolerate a bunch of fruits, no spices... I can't remember but most anything I ate in the beginning would give me some kind of a reaction. Same for smells. I was reduced to washing my hair with Ivory soap, brushing my teeth with water only, no perfume, no cleaning products around the house except for mild soap dish and Ajax, although the smell of chlorine would bother me... I couldn't go into stores because of the smells... I developed allergies I never had before to innocuous substances like the wooden stick of a broom, cold air on my legs would make me break out in huge hives all over my thighs etc... Things have improved a lot since. I can tolerate smells a lot better, I eat everything, I wear perfume and am contemplating having my apt painted... Stay away from anti depressants and psychiatrists. My GP used to insist I see a psychiatrist too because she thought my reaction was "mal adaptive"... I was dead set against all psychotropic meds and made it without. I'm happy again, laugh and enjoy the sweet moments of my life.. just hang in there. You'll get your life back, just hang in there. In the meantime, do the best you can. Avoid what you must and know that it will pass. You may want to check out this website for candida treatment. I took the caproyl and bentonite clay religiously for 6 months or so and swear by it. www.wholeapproach.com/Good luck.
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Post by jmanuel on Apr 26, 2011 23:59:01 GMT -5
Hi Msnycgal,
Thank you so much for the encouragement. I really needed to hear that it will get better.
This is the second time I have been floxed by Cipro. The first time was only mild symptoms, and the second has been the nightmare to say the least. It has been about 4 months for me now. I've had many symptoms that come and go. Knee, shoulder tendonitis, arthritic pain, tingling in legs and arms, motor nerve pain, burning nerve pain throughout body, 20lbs weight loss, eye floaters, headaches.
I've manage to stay away from all meds and kept a really good diet, that is until the food intolerances kicked in. I started with medium food intolerances for the first 3 1/2 months, and then I believe I had a big exposure to coconut oil during a massage that led me to this heightened state of intolerance.
Please do tell me more about your caproyl and bentonite clay protocol. At what point did you start these products in your flox timeframe? How did you determine that you had a candida problem? I understand that caproyl is derived from coconuts. I'm concerned that I may not be able to tolerate it since it is a plant. Did you also take the Syllium powder and probiotics? Did you follow the phase 1-5 packages on the website?
I had a GI appointment today. He agrees that I should avoid the antibiotics. He mentioned a fecal transplant as an option. Not sure what to think about that. We are running stool and breath test to see what is going on. Hopefully we can discover something.
Thank you for all the support in helping me figure this out:)
Jill
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Post by jmanuel on Apr 27, 2011 0:08:12 GMT -5
Hi Namid,
Hearing about your diet really helps me figure out a good base for myself. I know we are all different, but this has given me a good guideline. I am so grateful to have the support of those who have helped me during this very difficult time.
Wishing you wellness. Jill
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Post by Deleted on Apr 29, 2011 3:43:54 GMT -5
fecal transplant I remember we had a discussion about it not long ago in the old forum. In your case I would try to get more specific informations about what exactly is given. I don't know if it is possible to give "only" the good bacteria, which you may need or if your get everything, which would include the waste, which the body will no longer need. Because you have so many problems with food and the metabolized products, you may react against substances, which were neutral and safe for the other person. In addition you don't know with what that person may have come in contact, which may harm your vulnerable body like pesticides, solvents.... I think this method can be great for normal person, but I am not sure if it may help with persons, who are very sensitive. Namid
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Post by myrnawearshats on May 15, 2011 17:47:22 GMT -5
I don't think I can even deal with the concept of this.
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