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Flaxseed is a phytoestrogen that I am apparently highly sensitive to. 1. Makes my boobs swell up and hurt more - frankly speaking, sorry for being flat out blunt... 2. brings on more hotflashes even if I am using progesterone cream.. in that case, it makes me use more progesterone cream than I would need if I didnt eat any flaxseed during the day. At night, when taking the nightly dose of progesterone cream, eating flaxseed during the day makes me pee more- as all the fluid retention caused by the flax seed I've eaten during the day.... flushes out. (this is why the boobs hurt more, flaxseed acts like a mild estrogen and causes fluid retention in the boobs and that is annoying, like how your boobs feel before your period back in the old days... only it's every day I eat flaxseed.) It therefore takes longer to get to sleep at night on account of running to and fro to the bathroom. It's annoying. If I eat flaxseed too late in the day, it makes my usual menopausal insomnia even harder to deal with. (I'm not talking about a teaspoon a day of flaxseed here, I was eating three or four heaping tablespoons of flaxseed a day, when I was eating it, sometimes maybe as much as a third of a cup a day. I'd literally eat it like a cereal in the morning, then more throughout the day. Add to that a couple of flaxseed oil gel caps a day too. I loved the flavor so much, became so addicted to the taste over time, that I would pop the capsules in my mouth so I could taste all the delicisous concentrated flaxseed oil in the capsule, then spit the squished gel cap out.) On the other hand... flaxseed seems to lessen the PN nerve pain symptoms. It also helps my brain feel better and more awake during the day - it is impossible for me to take fish oil anymore to get Omega 3 (like I have done previoulsy all my life) because now the fish oil causes outrageous PN nerve pain. Therefore, flaxseed also becomes my main source of Omega 3. Also, there are two camps, camp one says to limit phytoestrogens because they can increase risk of breast cancer. Camp two says phytoestrogens actually leap in and take the place of real estrogen in the body, thereby reducing the risk of breast cancer (among other things). Also, Dr. Lee says high fiber foods remove dangerous excess estrogen from being re absorbed by the body in the colon after it has already been used by the brain. Flaxseed is a very good fiber, one of the best. I believe Camp 2 and Dr. Lee. After the diatomaceous earth, I had even less nerve pain and therefore did not have to take flaxseed to relieve that. Then it became kinda convenient not to eat all that flaxseed because the boobs didn't hurt as much either and I didn't have to pee so much at night anymore. Then I remembered - Oh - protects against breast cancer and one of the best fibers on earth that sweeps out dangerous excess estrogen.. and I start dutifully eating flaxseed again. That's why. I am pulling for you Stacy, one way or another you are going to find your way to a manageable situation, I just know it. To start with, the progesterone cream should help you, then if not, you can just abondon it. But at least your willing to give it a try and that's really important. ;) |
Karen, I have a feeling your PN causes are very different from mine, as you describe it, it does not sound like mine at all.
I have been taking fish oil, and 2 Tablespoons heaping, of flaxseed a long while and neither bother me at all. I do suspect hormones kinda, in that mine all started with thyroid issues, and I have recently found out I have auto immune issues, hashimoto. I have no evidence of menopause yet, even though I am 47, I have very regular periods, never missed one, rarely late or early. I have major PMS and I believe major estrogen dominance for sure. Hopefully all these things will help, nothing else is yet. I missed Easter with my family today, we drove to the restaurant and the AC broke and the room reserved for the party was HOT. One step in and I knew I would not be able to stay, heat sets off a flare big time. I had to leave everyone 10 minutes after arriving and go home and be alone. I am ready for a break through. Thank you for your kind thoughts and wishes, and help! Happy Easter |
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As good as my PN has been, I do not kid myself that it is gone. I still take my Vitamin D, B1 you told me about that I can never spell (Bentfiomine?), my progesterone, etc. Do you think I will quit that? No, because I am not cured, I am treated. I suspect you are right, your issues may also be from a combo and require different items to bring it down to where you are happier most days. :) In Doc Lee's book, he says estrogen dominance usually occurs seven years before your hormones actual register to the point where you are 'technically in menopause.' I also think that you should try only one new thing at a time, to see if that helps you or not. I read online - true or not, don't know - that if Vitamin D were to have been discovered more recently, it would be classified as a hormone, not a Vitamin with a letter on it. When I read that, it was like a light bulb went off over my head as to why it helped me so much when I got that Vitamin D level straightened out. I have big hopes for you and thanks again for what you did for me :hug:, Sincerely, Karen |
How much benfotiamine do you still take? I still take it but I only take 500 since it stopped having that amazing relief. You said earlier you took quite a bit more than that at one time, I guess I never upped mine above 500.
This is personal medical stuff but if it helps even one stranger who stumbles upon it well than glad we posted. You never know. How did you discover you had lyme disease? Yes, I plan to use only the DE first for awhile before the progesterone, mostly cuz I will receive it first. |
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Before I had progesterone help, and just had the Vitamin D help - I was taking four of those Ben. 250 mg. per day. That took away so much misery... the all over pricking and itching... sometimes lasting all day, the nerve pain that still started up at night in the legs. Then even with that, I wound up with nerve pain in the side and back that didn't go away with the ben. or the vit. d help. That's when - enter progesterone, and that pretty much cleared up in four days. Joyous again was I. But I still religiously took my ben. and alpha l a , one each in the morning, just as a precautionary.. and if I had any breakthrough on occassion, I would take more. Like if I drank soy milk, wham, here comes the nerve pain, then back to the closet for the ben. which would mostly relieve it. You see I'm talking about many various points of time in this post, that's why it sounds so confusing. Way back when the PN first hit, so did a pain in my knee, a big pain that was sudden. Not there one day, there the next - full blast. I figured, crap, I tore something. The first ortho guy told me it was not an injury it was arthritis and if he could fix that for me, he'd win some big huge prize that only the smartest doctor's in the world recieve. Then two weeks later, the knee ballooned up double. Went to ortho again, he told me - oh - physical therapy and shoe inserts. Still ballooned up two weeks later, went back and ortho said, oh - you just over did it. I thought "F" this and called my cousin and she gave me referral to different ortho, Dr. McDevitt of Glen Burnie. Dr. McD took one look at knee and said that's lyme disease. He said he's had a record number of cases of it this year. Sent me upstairs to lab to have a blood test. Blood test came back and it showed like a small elevation indicating something meaning positive for lyme disease. I couldn't believe it - other people get lyme disease, not me. I've had no deer tick and sure as "H" had no 'bullseye- ever. I asked, well since it's such a small indication, could that mean I had a mild case of lyme disease? Dr. McD said, 'that's like being a little bit pregnant.' I thought Oh crap- but then I got real happy cause now all I needed was a bottle of antibiotic and problem solved, right? Then I found out that neuropathy can be caused by lyme disease. So then I got even happier thinking, Oh Goody - now that's its just lyme disease, when it goes away with the antibiotic, then goodbye peripheral neuropathy - Whoo Hoo!!! Both problems solved!!!! (This was not the case, still dealing with lyme, on antibiotic again right now and still have PN) Also on lyme blood test, doc McD asked for vitamin d level and it was 16 point something and he told me it was the lowest he'd ever seen in his entire career. I asked why; he said maybe that was just hereditary. Then he took xray of the leg and said, Oh by the way, you have an extra joint in your hip - some kind of genetical defect. Then I felt super creepy for a while after that and would rather not have know bout that. :rolleyes: Then I finally got the nerve to come here and ask around. I was afraid because I was scared crap less already about PN and didn't want to read more horror stories and be even MORE scared and upset. But pain forced me to come here and then I got the help that I have already mentioned boo-coo times, that gave me my life back. But then again, I was the one who tried what people told me to try, also. The neurologist never asked for any tests until I went to a second neurologist for a second opinion. The second neurologist asked for tests and then the first one, he decided he wanted to see those tests too. Both told me, 50% of the people with PN are diabetics, and if you are not a diabetic, then we usually never figure out why you have PN. So I figured, ok, it's up to me to use Dr. Google and find out myself. And here I wound up, among many other places. |
I would like to comment on benfotiamine:
I really don't think 500mg of benfotiamine is necessary once you establish daily use. After about a month on 300mg to start, 150mg should be enough for most people. |
Hi Mrs. D - thanks for you input. In the past, I found that I would rather take a ben. than a pain killer prescription drug. It made me feel more well to solve my occassional leg pain in that manner - with a supplement, rather than a prescription drug. I just took what kept my pain at bay - but I never exceeded the four 250 mg,. capsules a day per the directions. Thanks for your note, Karen
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That is your choice, Karen. But I wanted to go on the record that I don't believe that high a dose is necessary.
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MrsD that is what I thought, which is why I cut back. I may have taken more than 500 at some point back when I thought it would help, but then dropped back to 500. I guess I thought 500 was enough, I take one pill with breakfast, 250, and one with dinner, 250. Not sure it is doing anything anymore.
MrsD do you feel it is not safe to take 500 a day? Guess I can cut back, since I am not sure it is doing anything. I keep taking also for blood sugar reasons with my meals. Karen I am going to ask for the lyme test in a couple weeks when I go back to neuro. I have never checked my vitD but I take 5,000 a day. I am never in the sun, ever now. Karen, how do you use the DE without inhaling it? Seems that it is a concern not to breath it into lungs, even suggest a mask???? Seems scary. Do you wear a mask when putting it in water? |
You do not always have to have a bulls eye rash with Lyme Disease. Also, you may never see the nymph that bites you and it has to hang on for like 18-24 hours in order to transmit the bacteria that causes Lyme disease. The nymph is like a pinpoint. It is very hard to see. And not all deer ticks carry the bacteria that causes Lyme Disease.
Not everyone gets really sick with Lyme Disease either. |
Kitt do you also have lyme disease?? Thanks for all the info!
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No, I do not. However, I do know a few people who have it.
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Karen I have been reading about some people experience the "herx" as a side effect of starting DE, sorta like the candida die off. Especially people with a lot of fungus/candida and other type problems, which would make sense.
I think I am going to go very slow as you said with starting DE since I have candida. |
Since we have been talking about lyme disease, here is a very good page on it I found today.
http://www.livingwithlyme.info/137764039 |
There also are a bunch of useful sites on the Lyme forum by Bobbi, Lara and others. Thanks for the site.
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Well what happened was - the same obgyn doc who told me that the progesterone "will help your neuropathy," also told me that to aviod taking estrogen (which is more dangerous) to eat all this soybean stuff per day and soy milk. At first all seemed fined and I figured it would be no problem with the neuropathy - the soy cleared up the menopausal brain fog wonderfully so I was pretty happy - although it got old kinda quck eating all that soy bean per day.... Then, after a bit of time went by, when I ingested it, particuarly the soy milk, wham - all of a sudden the nerve pain in the legs would start up. Soy is a phytoestrogen, one of the most powerful, if not THE most powerful... and it was estrogen dominance that was at least partly the culpret for my PN - as proven by additional relief from my PN symptoms that I receieved nearly immediately when I went on progesterone... which reduces estrogen dominance. So on the one hand, same doc told me - progesterone helps neuropathy, and although that turned out to be completely true, also told me but take soy to help your falling estrogen levels - soy a phytoestrogen, increases estrogen dominance which works against the relief I was getting from the progesterone. When my neuropathy seems to be able to tolerate something for a while, then whatever the new things is builds up in my system and beings to cause additional neuropathy symptoms, it takes me a while to realize - Oh, ok, now the soy is causing more problems my neuropathy for me than it's worth for me in getting relief from the menopausal symptoms. During that period of not realizing what was increasing the leg nerve pain all of a sudden, I was taking the maximum benfotiamine permitted, four, 250 mg per day, that according to the instructions on the bottle, at least (so much as I can believe that) which is the Life Extention brand (by the way). I felt better doing that than taking drugs for the pain, because when the pain went away when I took the benfotiamine that made me feel proud that I was managing neuropathy symptoms with supplements. Also, just to note, I finally (at some point) took the advice that I had seen so many times at this site from many others, and began taking 200 - 600 mg alpha lipoic acid and had even further reduction from nerve pain. Also, Mrs. D - when I wanted to splurge on chocolate or some other neuropathy trouble making goody - I will pop my supplements before doing so hoping to minimize the increase in neuropathy symptoms - although I would still wind up paying for that slurge with at least some pricking in the toes. Again, the Diatomaceous Earth has taken all that chocolate craving away from me, which is part of the wonderful relief I have recieved from that. Just a story of mine as to how I came to take so much Benfotiamine, just one example too, there have been others; along the same lines as this one, just different supplements I tried that didn't agree with my neuropathy. |
I am starting my DE today. Right now, lol. I am starting with only 1/2 teaspoon as I have read for days on a couple forums about this and some people really have the herx/detox reaction with flu, headache, pains. I do not want this to irritate my feet too much so I am starting slow and small.
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Great luck to you with it! |
Wow, I am so glad I decided to go back and read this thread from the first post. I clicked on the link in your very first post and read this:
Secondly, an unexpectedly dangerous compound to avoid is N-acetylcysteine (NAC), a high-priced product heavily recommended by alternative medical doctors and other health practitioners. NAC is a form of cysteine often recommended as a more powerful form of the much-needed amino acid L-cysteine or in lieu of glutathione, an antioxidant that is rarely effective in supplement form.66 Although dozens of journal articles support its short-term use as immunity booster and detoxifier, evidence is mounting of potential long-term harm. The NAC form of cysteine conceivably can poison vitalethine, a vital component needed to activate humoral immunity.67-69 I have an unopened bottle of NAC that I just bought and was going to start taking. Glad I read this post again. True or not true I think I will avoid it for now. |
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http://neurotalk.psychcentral.com/post1065604-5.html |
There are a lot of special things the world does not hear about that are amazing.
Not hearing about something does not negate validity. Maybe it is due to no big money to be made. Just my opinion. But as I said, I am not validating the info just sharing. |
Linked to your Facbook page
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My limbs are on fire with parasthesia as I write this and I'm about to pull out my hair!!! This mega nerve pain spike has been compounding non stop for 3 weeks and I'm praying it will subside before I'm forced back on those !!!!! meds. Thank you for caring and sharing. |
Compounding Pharmacy
There is a super knowledgeable compounding pharmacy near me. I called them up yesterday and asked them if they've ever heard about people ingesting food grade diatomacious earth? They said they always keep it in stock. Apparently lots of their customers ingest it routinely for all manner of ailments.
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Birdman, I am on day 4 of taking it. If you google this you find so much info on it, I found 3 great posts at different forums about it, with tons of posts/replys of people taking it and listing benefits and side effects of taking it.
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Youtube Videos too!
I have researched it further and found another forum where someone else shared her personal positive experiences and lots of other people gave her a hard time because she had no scientific evidence. Like Karen all she wanted to do from the way it looked to me was share her long term observations with others. So I have researched on Youtube and there are great informational videosas well as some marketing ones. There are articles about different ways of consuming it from adding it to your protein shake to adding it to all kinds of food and some recommend taking some form of pro biotic or cultured yogurt blended with it.
As it restores your intestines you may want to replenish lost bacteria. It may turn out that adding various things with it helps some more than others. I keep hearing one teaspoon in the morning and one in the evening. Others try I teaspoon in the morning even if you are healthy. Some say if you get ahead of yourself and start with 2 tablespoons twice a day you might find it unpleasant and get massive constipation so the mantra seems to be to start with a little like Karen and increase until your body tells you what it wants after it has had a chance to get accustomed to it just like if you were trying every other new treatment. A lot of the most popular non medical supplements we take aren't scientifically proven and FDA approved but it seems clear to me a lot of people have benefited. After establishing that there doesn't appear to be any horror stories about ingesting food grade DE I think it fair to say I'm going to give it a go too and if it works for me I'm going to crow all about it too so be warned! |
Stacy
After reading back from some of your older posts on past topics you have had some really tough times so I can appreciate your decision to give this a try. Where did you buy yours?
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I bought mine at:
http://earthworkshealth.com/ I felt they were the best from everything I read. Yes, things are bad for me again right now even. The gaba medication worked great for one whole week, however, it has stopped working and I am back on the couch at night sleeping one hour and putting my feet in cold water every other hour. I guess I have to call the doctor Monday and let him know it stopped working. I have not noticed anything from DE yet but I am pretty clean with detox stuff so maybe it will take awhile, it has only been a couple days. I do not see any reason to fear taking this after reading/researching it. good luck |
I am still on the "fence" with DE....
I am not finding anything useful in the way of studies to recommend it here. I will at this time not be using it myself. I did find a person reporting that it caused rectal bleeding. So if anyone here notices this side effect, that is a sign to stop using it. I would wear a mask while measuring it out. I do not think it is safe to inhale. I would also suggest to take "vacations" from using it, in case it is mined from a toxic source. In the past several popular "natural" products have been found to be contaminated with heavy metals. Blue green algae with fluoride, Coral Calcium, and dolomite. These were sold for YEARS to the public contaminated. I am finding people on the net who recommend taking probiotics with DE. The reasoning for this is that DE is purported to kill organisms in the GI tract, and this would be nonselective and include beneficial organisms we depend on. For example, one organism is responsible for removing oxalate from the veggies we consume. Then this oxalate is absorbed and excreted by the kidneys, which can develop into oxalate kidney stones. http://www.ncbi.nlm.nih.gov/pubmed/20602988 If over time these beneficial organisms die off, then they need to be replenished. Antibiotics will kill off these beneficial bacteria too. What I see online so far is a "fad". This may turn out to be very useful, but the human oral consumption of DE still remains to be examined more carefully IMO. The FDA so far has this on the GRAS list (generally regarded as safe). But if you examine the GRAS list you'll find some scarey things. So I wouldn't rely on this classification as an FDA endorsement. Some DE is consumed every day by people, as DE is used in food production. We just don't have figures easily found to describe "how much" we eat daily. |
Not everything comes with scientific study, especially supplements, so I am ok with that. But I understand what you are staying.
As far as the rectal bleeding, it was thought to be hemroids since the blood was red not brown, bright red usually means hemroids. So, that does not scare me either. I guess I am not a person that needs scientific proof. There are far more positive reviews than negative with this. I agree with the taking a break from it though I believe that to be the case with ALL supplements. Nothing is forever. I am already on probiotics, and I did see a few suggest that. I think there are fear mongours with anything that people do not understand. The fact that this is used as a pest control freaks people out and causes fear. I am not motivated by fear. Too many positive things has been used by God in my life to let fear rule me. I understand checking things out but in the end all supplements can be good or bad, look what niacin did, and it is safe. You were/are? against iodine, but there is so much out there that is good about iodine and breast fibroids and such. Real people, some of whom I have talked to. I am still of the mind iodine is such an important supplement for thyroid and breast health. I think you have a more medical scientific mind MrsD, as perhaps you worked in the medical field? But thats ok, everyone is different, everyone has to be lead on their own. I respect difference of opinion, and certainly am not trying to persuade you or anyone else of what to do. I only share my own journey. |
Yes, I would like to see a timeline here, on DE... a longer use than a month or so as we have here.
Anyone here can try what they want. I only pointed out the concerns I have based on my experience with drugs, chemistry and supplements. This is a written format and as such people need to be aware of the responsibility posting advice. What works for one may not work for another. This is why I prefer to find studies examining things and published as studies. I have a foot in both worlds...the medical and the alternative. Both have their weaknesses and strengths. I like to see more balanced information before trying something myself. And so I tend to spend long hours searching the net and sharing here. Most people and doctors do not know about Oxalobacter's role in preventing kidney stones, for example. So I provide that information when needed to help patients prevent further injury. |
Mrs. D, what about the kidney stones? I can ask my Urologist about it since I have not heard of that.
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There is a bacteria in the normal bowel flora...Oxalobacter fomigenes. It is killed off by chronic antibiotic use:
More here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2396938/ At the time I first learned of this good bacteria, it was not available in probiotics, but these 3 seem to be and are also helpful to some extent: http://www.greattastenopain.com/nl/09/04_06/062609.asp http://www.nature.com/ki/journal/v83...i2013104a.html |
Oh, I very rarely need antibiotics since I know how to keep from getting UTI's now. I also take a good probiotic daily. Too bad, I was hoping something would help kidney stones besides all I am doing now.
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Hi Sally
I came across a good article on Kidney stone prevention from Harvard Medical School's "Harvard Health" publication. The article is titled "5 steps for preventing kidney stones" by executive editor Daniel Pendick. If you Google it I'm sure you'll find it too. It's a good read and not too long.
I agree with Mrs D that research studies are preferable before embarking on a controversial supplement when ever possible. Sometimes you have to step outside your comfort zone and take a calculated risk. You have to risk reaching into the unknown. I've read about double blind studies done on acupuncture where the results showed only the slightest improvement over placebo but I personally have witnessed it "appearing" to powerfully heal when everything else I tried failed. Perhaps my experience was coincidental and was healing on it's own all the while. I tend to doubt that it healed itself but who can say for sure? Who can say if the is a deity watching over me assisted me or not? Sometimes it's a faith thing. I knew someone who went on a wheat grass fast for 3 years consuming only wheatgrass juice and a few supplements who got terribly ill as the detox effects were long lasting and extremely severe but he never strayed from his commitment to ride it out what ever happened and eventually started to improve to become a very fit and energetic person where before he had a very weak immune system and was always tired and sickly. Lengthy wheat grass fasts are well known for their intense detoxification and nutritional healing. Some who were too weak before doing a detox like that have died. There is always the risk. You only have my word on that story and frankly you don't know me from the man in the moon but you can read up on wheat grass fasting just like you can with DE. I suspect DE is much easier to stick with than wheat grass too. You might want to experiment with wheat grass as well. There are lots of seemingly unusual remedies out there that only come by word of mouth that have saved peoples lives for centuries. We all are out of balance in one way or another and we cant expect all remedies to behave the same for everyone. For some taking a leap of faith there is healing regardless of collected evidence or not. Proof is in the pudding as they say. Pain is a great motivator and I'm willing to take a leap of faith on adding DE to my daily routine if there is the slightest chance it will help. Perhaps it will take weeks or months before I feel or see improvement in my pain or in my lab results. As long as it isn't too hard on my system I'll stay the course. I'm planning on getting some at the compounding pharmacy I mentioned to get started myself. I'll order some where you got yours to continue on. Thank you! |
Birdman, those steps are always the first thing to do. Nothing new but thank you, I did look at the steps. No easy answer. My specialists always prescribe Potassium citrate(I think that is right, I forget right now). I take that and do all I can.
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Birdman, thank you so much for that last post, I relate to it on a very personal level. Thank you for your contribution. :)
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Just found this thread. I've taken DE off and on for some yrs but never stayed with it. Now I'm back on it and plan to stay with it...my knee issue and other OA issues are more advanced in the last year so I'm going full throttle and now back to DE and will take it daily for at least 3 months and "see"...
Any new info to add here? |
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