Living with Neuropathy - Welcome to the group

Sorry I meant to say 6 mg of boron three to four times a day - I'm taking about 21-24 mg per day. I arrived at that dose based on what it took to get rid of all my RA and OA pain. I think it helps with fibromyalgia also. But what really helped with fibromyalgia is I went off ALL sugar. It's hard to do that - there are over 187 names for sugar and you have to know them all in order to avoid it. Going off all sugar fixed almost everything in my body! I am following the diet in the book called The Candida Cure by Ann Boroch - I've been doing it for six years almost and although I am going to be 70 soon, many days I feel like I'm in my 20s. I also take turmeric, boswellia serrata, multivitamin, B complex, vitamin D3, vitamin K2 (mk4, mk7), vitamin C, aloe vera, bioquercetin, zinc, calcium, magnesium, boron (approx. 20 mg/day), collagen peptides, CoQ10, PQQ, NAC, sunflower lecithin (works great for memory), and more. The boron just took all my skeletal pain, arthritis pain, fibromyalgia pain - all of it. I have a tough time taking many prescription meds - so I rely heavily on herbs, vitamins, minerals. I have a lot wrong with me such as hypopituitarism (due to a pituitary tumor), and about 15 autoimmune diseases from myasthenia gravis to rheumatoid and osteoarthritis, hidradenitis suppurativa (which is controlled by turmeric), Reynaud's (which stopped by I don't know how or why it stopped), and peripheral neuropathy. I also have Mitral Valve Prolapse and Panic Disorder. Going off sugar helped everything on my body and I lost a bunch of weight, I read that somebody here has carpal tunnel - I had surgery for that 30 years ago and it fixed it instantly and I wondered why I didn't do it sooner,. (I type 130 wpm and was a pianist.). I hope something I have written here will help somebody. I got my peripheral neuropathy down to just bugging me maybe 2-3 nights every month or two. I used to wake up in horrible pain every morning with PN pain. I'm not sure what caused it to stop bugging me who much - I was hoping the PQQ (which must be taken with CoQ10 - and NAC rounds it out nicely). Now and again it will bother me for a couple days, then it disappears again. I find cannabis CBD is VERY effective for almost any pain. It made me a little bit sleepy the first few times I took it - now I only feel relief when I use it.

So Hank (jesfactsmon), somewhere in all that, my fibromyalgia just disappeared. I think sugar had a big part in it, I DO take gabapentin (900 mg 3-4 times a day), boron, and all that other stuff. The PQQ may also play a part in that. And staying active is also important.

I have to say the usual disclaimer of be sure to ask your doctor before you do anything serious. My doctors didn't know what to do to help me - so I just took off on my own. My infectious disease doctor knows everything I am doing and approves.

Sorry I meant to say 6 mg of boron three to four times a day - I'm taking about 21-24 mg per day. I arrived at that dose based on what it took to get rid of all my RA and OA pain. I think it helps with fibromyalgia also. But what really helped with fibromyalgia is I went off ALL sugar. It's hard to do that - there are over 187 names for sugar and you have to know them all in order to avoid it. Going off all sugar fixed almost everything in my body! I am following the diet in the book called The Candida Cure by Ann Boroch - I've been doing it for six years almost and although I am going to be 70 soon, many days I feel like I'm in my 20s. I also take turmeric, boswellia serrata, multivitamin, B complex, vitamin D3, vitamin K2 (mk4, mk7), vitamin C, aloe vera, bioquercetin, zinc, calcium, magnesium, boron (approx. 20 mg/day), collagen peptides, CoQ10, PQQ, NAC, sunflower lecithin (works great for memory), and more. The boron just took all my skeletal pain, arthritis pain, fibromyalgia pain - all of it. I have a tough time taking many prescription meds - so I rely heavily on herbs, vitamins, minerals. I have a lot wrong with me such as hypopituitarism (due to a pituitary tumor), and about 15 autoimmune diseases from myasthenia gravis to rheumatoid and osteoarthritis, hidradenitis suppurativa (which is controlled by turmeric), Reynaud's (which stopped by I don't know how or why it stopped), and peripheral neuropathy. I also have Mitral Valve Prolapse and Panic Disorder. Going off sugar helped everything on my body and I lost a bunch of weight, I read that somebody here has carpal tunnel - I had surgery for that 30 years ago and it fixed it instantly and I wondered why I didn't do it sooner,. (I type 130 wpm and was a pianist.). I hope something I have written here will help somebody. I got my peripheral neuropathy down to just bugging me maybe 2-3 nights every month or two. I used to wake up in horrible pain every morning with PN pain. I'm not sure what caused it to stop bugging me who much - I was hoping the PQQ (which must be taken with CoQ10 - and NAC rounds it out nicely). Now and again it will bother me for a couple days, then it disappears again. I find cannabis CBD is VERY effective for almost any pain. It made me a little bit sleepy the first few times I took it - now I only feel relief when I use it.

So Hank (jesfactsmon), somewhere in all that, my fibromyalgia just disappeared. I think sugar had a big part in it, I DO take gabapentin (900 mg 3-4 times a day), boron, and all that other stuff. The PQQ may also play a part in that. And staying active is also important.

I have to say the usual disclaimer of be sure to ask your doctor before you do anything serious. My doctors didn't know what to do to help me - so I just took off on my own. My infectious disease doctor knows everything I am doing and approves.

Hello Parrotqueen, I thought 20mg. of boron was the max safe dose? I take almost everything you do. I'm trying to get off sugar. Do you consider monkfruit a sugar? I don't really like the taste very much but am trying to get off sugar. All the best, Sunnyflower

Hello Parrotqueen, I thought 20mg. of boron was the max safe dose? I take almost everything you do. I'm trying to get off sugar. Do you consider monkfruit a sugar? I don't really like the taste very much but am trying to get off sugar. All the best, Sunnyflower

@irishpat70
Hi, I am wondering, since you placed your post under the neuropathy group, whether you have been diagnosed with peripheral neuropathy (PN)? If not, are you intending to be tested for it?

As to what can cause PN other than diabetes, I have heard a myriad of different causes from a number of different people in this forum. My wife's is from chemotherapy (a fairly common cause), but quite a few people say theirs was from different surgical procedures. Some have gotten it simply from an injection. A vitamin b12 deficiency caused another person's case. And there are other causes as well. Just FYI. Best, Hank

@parrotqueen
It sounds like we have a lot in common regarding supplements.
Many of the things you are taking are similar to what we take, but some of what you take we don't (and we're not familiar with boswellia serrata -will look it up) and we are taking some things which you do not list. We did take PQQ for a while but did not notice much effect. My wife took CO-Q10 with it but I did not. We also take acetyl l carnitine (with r lipoic acid), l carnosine and Niagen and Mito-Q, all for mitochondria boosting, but we did stop NAC I am ambivalent as to whether we should start that again. We both reduced sugar drastically in 2014 but are not fanatics -maybe we should be. My wife has PN and fibro along with a few other annoying things. We both suffered through the candida albicans scourge back in the 80's but came through it, thankfully by a STRICT diet for a time.

Thanks for clearing up the boron question. It sounds like I need to find out if Linda (my wife) needs to up her boron intake for her fibro. You certainly sound a lot like me in that you research everything and are doing as much as possible to help yourself via supplements while trying to avoid drugs. A compatriot for sure!

Thanks again, Hank

@jimhd Jim, please tell me exactly what you mean when you say "adjusted"...the implanted device? your remote? During my trial with the Medtronic SCS, I could reprogram the stimulator using the handheld remote device.

@jimhd
Good morning Jim,
I have severe memory issues so I only take medication once a day. When I’m hospitalized and tell them I take all my medicine once a day it usually weirds them out but it works for me. I was wondering if you had ever discussed with your doctor your memory issues regarding your mid-day doses? Perhaps an extended-release version would be a better option. Because of my memory issues I was on the fentanyl patch which is changed every three days. That could be another option for you.
Jake

@parrotqueen
Hi, just wondering what your experience has been using boron for fibro. We started taking boron (3 mg/day) a couple months ago or more based on some info provided by @onamission . Also wondering how you arrived at 6 ml of boron 3-4 times per day? According to Google, 1 ml = 1g. From that it would seem that you are taking at least 18 g of boron per day. But I must be misunderstanding this because that would be way too much from what I have read.

Thanks in advance for any info you can provide. I am very interested in this. Best, Hank

There are many many people taking 150 mg of boron daily for osteoporosis. My osteoporosis is extremely serious (severe is -2.5 and my DEXA score was -5.7 - alarming). You know Ruth Bader Ginsburg ate a bag of prunes daily for her osteoporosis - but you can't get enough from prunes. I'm not willing to take a lot over the recommended upper limit, but truth be told, they do not really know much about boron and limits. It IS known that a lack of boron will cause osteoporosis. I am not worried about how much I am taking. Over 20 mg a day is when there are changes (increases) in the amount of estrogen in your body. I am not worried about estrogen. I couldn't believe it when all my arthritis symptoms disappeared when I took boron! But if you miss even one dose, it comes. back. While it may cure (or significantly help) osteoporosis, it is not a cure for arthritis. It does get rid of all the pain while you are taking it.

Yes monk fruit IS considered sugar. I do not eat any fruit except a few berries a day (6 or fewer). I do not eat vegetables high in sugar such as root vegetables, beans, peas, etc. It is VERY hard to avoid sugar - it is in everything - and there are over 187 names for it - so they sneak it into everything. Pick up a box of Morton's salt and look at the ingredients. Salt and dextrose - dextrose is sugar. They are adding sugar to milk these days and milk already has sugar in it. I have to be very very careful. One surprising source of a ton of sugar are condiments and rubs - look at your ketchup bottle! The only sweeteners I am allowed are Xylitol and Stevia. And those only a little at a time. I make a great chocolate pudding - you won't believe this - out of avocados! I use unsweetened chocolate powder. It tastes like chocolate mousse! The best way to go off sugar is cold turkey - all at once. Having that book The Candida Cure would be a real help because she outlines everything you need to know. The author, Ann Boroch, had MS and was in a wheelchair for 24 years. She cured herself. She knew she had candida overgrowth. She became a nutritionist and then became a naturopathic doctor. My stomach and esophagus were killing me for over three years. The pain was unbearable but the doctor I had at the time would never tell me what was going on. She was testing me for dementia - I was such a mess. I felt dizzy all the time, brain fog, couldn't stand to smell cigarettes or perfume, there were so many bad symptoms. But the pain in my gut - and I was having chest pains that were legion - so bad I had to pull over on the freeway a couple of times. That turned out to be candida overgrowth in may esophagaus - causing it to cramp up - which feels like a heart attack. I decided to kill myself - hand a handful of pills to do the deed. At the last minute, I decided to take one sleeping pill and see how I felt when I woke up. When I awoke, I KNEW it was candida overgrowth. A friend suggested that book - I downloaded it to my Kindle and headed to the grocery store to buy compliant foods. I cleaned out all my cupboards and refrigerator, and took all the food to a neighbor that had just had hip replacement and didn't bother to buy any food. That was April 2, 2015 - more than 5-½ years ago. Now, though I will be 70 at the end of December, I feel like I am in my 20s all the time! It is amazing what going off sugar has done for me. I sleep like a baby now. I am usually sharp as a tack (I had to take medication for migraine today - it's a long story - and is tied to Mitral Valve Prolapse getting worse - at any rate - the meds have me loopy as I usually don't take this stuff). I had metaplasia cells in my stomach - those are pre-cancerous. I also had polyps in my colon all the time. Those and the metaplasia cells are gone. When I went to the dental college, they made everybody stop what they were doing and come and look at my "perfect and healthy" mouth!! I even got rid of my toenail fungus. I have energy all the time. It is truly amazing. I didn't realize how much sugar I was getting. It is in a lot of medicine too. I get IVIG every two weeks, and I had to find an IVIG product that didn't have sugar! But if you think you will get off sugar gradually, you will keep craving it. The craving fir sugar usually stops in 14 days - if you just go off some sugar, you will continue to crave it on a daily basis. All baked goods have to go - unless you find something that has no wheat, sugar, etc. I have candida overgrowth because I must take steroids daily for adrenal insufficiency (I have hypopituitarism because of a pituitary tumor - it cannot be completely removed because it is on the optic nerve... so I have to take cortisol or I will go into a coma. Steroids, antibiotics, hormones and stress and some of the common causes of candida overgrowth. Basically, those drugs kill off all the bacteria in your body, and when that happens in your gut, the candida can overgrow when the good bacteria that usually lives in your gut is wiped out. We all have candida in our bodies, The key is to keep it in balance so it does not overgrow and become a problem. If you don't deal with candida overgrowth, it causes problems like MS, myasthenia gravis, erectile dysfunction, cancer, ALS, all sorts of things. Nothing good.

As for supplements and what they do - I have given this website out on Mayo Connect and they allowed it - check out http://www..consumerlab.com. It is a nonprofit group for consumers - it is a consumer watchdog group for supplements. They test supplements to be sure they are what they say they are, they have as many mg. as they claim, they do not have any impurities, they open up in the body (many of these things go right through your body without opening up). Additionally, they post hundreds if not thousands of peer-reviewed articles and the like so you can search and read all about whatever it is you are thinking of taking. There isn't much about boron there - boron is relatively obscure and little-understood. People have known it cures osteoporosis and treats arthritis and fibromyalgia for a long time, but where's the money in that? Also, many doctors do not know anything about nutrition. They know as much as the man on the corner, The more you learn, the better you can heal yourself. Food is medicine. I have had remarkable luck in pulling my body back from the brink of death into being relatively healthy (for me). I read about nutrition all the time. I'm reading Ph.D.-level nutrition books now! I find it fascinating. My doctors are in awe of me now,. They always tell me how proud of me they are. And one more thing: You get unbelievable respect from doctors when you tell them you don't eat sugar in any form. Sugar causes inflammation and it feeds candida, cancer, and lots of other terrible things. Inflammation leads to disease, So stopping inflammation is a very good idea. Your body will be so grateful. What about all my friends and family who initially thought the diet wouldn't last and I was crazy? They are all trying the diet now too! They can't believe their eyes when they see how healthy I've become. They thought for sure I was dying. So if you are having pain associated with fibromyalgia, arthritis, osteoporosis (which includes men), or if you are having ANY pain, I suggest try going off sugar. Just know you are going to be cranky for a couple of weeks - allow yourself extra time for everything and try to reduce your workload - and just go off the stuff. You will feel a little rough for about two weeks, then you will start feeling better. I highly recommend that book - The Candida Cure by Ann Boroch. If you don't have candida but think you'd like to go off sugar - she has a great guide for doing that and tells you everything to avoid. I did not do any of the organ cleanses she suggests - I think cleanses are too hard on the body. There are good recipes in the book and she has a cookbook with very good recipes in it. And if you are on Facebook, I can help anybody that wants to go off sugar by giving you membership in a private group for people doing the Ann Boroch diet. We have a library with recipes galore.