Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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Yes Lori I did get kratom for my wife about a year ago. She tried it but did not like it for some reason, something about it making her feel weird or something. She still has most of what I got for her. Well I am glad you feel the Calmare treatment was something you do not regret trying. If we come into a large sum of money someday such that it is not an object to this therapy we will likely try it as some people (like the story by the woman in John Bishop's link) do get a good benefit. I'd like to meet this man in Illinois someday. Where does he practice? (I grew up near Chicago actually).
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@jesfactsmon Hank, Calmare therapy, Spero Clinic, is in Riverwoods, Illinois. Just looked it up. Lori
Do any of you know where Lyrica, Pregabalin, Gabapentin, etc. are manufactured? I hope it's not China … Peggy
I just looked it up: Lyrica (pregabalin) is manufactured in India, gabapentin is manufactured in Isreal. Peggy
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@jesfactsmon Hi again, Hank…..I did Calmare therapy at a suburb close to Deerfield, Illinois, in a lovely north suburban neighborhood. I cannot, for the life of me, think of the name of the suburb. The man who owns the clinic who also does the treatment, is Norm Black. He practices out of Spero Pain Clinic. Norm is on face book, and his clinic is also. I know that people stay at nearby hotels from all over the place, to get his Scrambler therapy. He is very devoted and truthful. I still talk to him occasionally. If you look up Spero Clinic, you will find him. Had I got even 3 weeks relief the second time, I would have done it again. Another thing, for what it is worth, I discovered Kratom in pill form, rather than chugging the vile, disgusting, leaf powder. Now I taste nothing. Tell your wife she really has to experiment with dosages and sellers of Kratom. The stuff works well, without the high of marijuana. I buy the Kratom pills at ethanaturals.com You might want to buy the smallest bag of pills that say they are for pain or discomfort, and try them. I actually take 8 of the little pills, which is equivalent to 2 and a half grams of Kratom. Within about 10 minutes, the pain is gone for a few hours. Just don't take it daily, cause it is addictive. I think your wife should try these. Nothing to lose, and if you buy the little bag, it costs next to nothing. Best of luck to you and your wife. Neuropathy is intensely painful. Horrid. Go check out the Spero clinic, and Norm Black. One devoted man. And, there is a giant bird cage when you first come into the clinic, with the most darling little chickadees inside. I loved to go there, just to see the birdies!!! Take care, Lori Renee
Thanks for all of this info Lori. Very interesting, about the clinic and the new insight into kratom, perhaps I can get Linda to try the pills. She may balk at the addictive aspect but we will discuss. What that gentleman in Riverwoods Illinois is doing, administering the scrambler therapy, is what had occurred to me when I first read about it, how if someone could come up with the $100K to purchase the unit and go through the training, they could have a built in career for as long as they wanted it. And how rewarding, to be able to actually help lots of folks with chronic pain. And if more people did that then perhaps the availability as well as the price of the therapy would improve and it would become more accessible to more people. By the way, I know that area; for 35 years my parents lived just 6-7 miles from there in Glencoe Ill. and I spent my high school years there. Perhaps someday we will go visit Mr. Black regarding the Calmare therapy. Thanks again Lori! -Hank
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Rachel, my wife said this regarding your post of yesterday:
Rachel, Hank just read to me your post. I understand and sympathize with your dilemma. I believe chronic pain offers an opportunity for "any" weakness in your body to flare and thrive. Even though I know my suffering will increase when I have a drink or eat something containing sugar — sometimes you just need a "vacation", a diversion from pain. So don't be too hard on yourself. Everyone needs an escape from chronic pain. I find no help with aspirin or any other pain killers. I am allergic to them all. Gabapentin gave me hope but then I began hallucinating, had balance and vertigo problems, my tinnitus worsened, I gained 10 pounds and I couldn't think.
My coping support comes from an electric fan on my feet day and night. Not being in any temp over 65 degrees summer or winter. An infrared lamp on my feet and cutting sugar out of my diet except for piece of pie or cake on Christmas or Thanksgiving. I really look forward to one or two mixed drinks a week as tolerated. This is a journey of constant search for what works for you. Hank has been my search engine! By the way, sometimes I get a little relief with soaking my feet in hot water then put them in front of the fan to cool off quickly. I think it confuses the nerves.
Gabapentin made my memory history
What are you taking instead, then, @wilcy?
@jesfactsmon Hi again, Hank, Mr. Black did exactly as you have described. I forgot how he heard about the machines, but decided to buy them. He has three machines in his clinic, and does what he can to help people. He does admit that he does not help everyone, and is a tremendous advocate for people with CRPS. He's just a real good guy. As far as the Kratom, it will not become addictive if used only two or three times a week, and in pill form. is tolerable. As far as Glencoe, my dentist is there, and I had a boyfriend a way long time ago that lived there. I have always said, that it has to be just the prettiest community. I do not know if you have been there for awhile, but it is just gorgeous, with old trees, giant, magnificent houses, and land not to be believed. Anyway, do take care. It is a shame your wife won't use a computer. It would open up a world to her. Thanks for talking! Lori
Rachel, Lori, etc. I recently read in an old edition (11/19) of Time magazine a very interesting article about a pioneering Dr. Kevin Tracey, neurosurgeon, who helped a woman with Crohn’s disease who is now in remission, needs no drugs, her body now healing due to his innovative electroceutical (electro-stimulating implanted device) approach to autoimmune disease. If you google “Set Point Medical” or Dr. Kevin Tracey, Manhasset, NY you can read about him. This woman was in a clinical trial in Amsterdam so unfortunately this treatment is not yet available, just a future possibility. (Excuse this if it has been previously posted) Helen
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@jesfactsmon Hi again, Hank, I do not regret trying it, at all. The man who does it in Illinois, (there is only one place in all of Illinois who does it!) is a true gem, and has helped so many people. He does say, there are people who he cannot treat. Their nerves are so far gone, that they don't even feel the electrodes. I do not know if you are a bit of a rebel, or pioneer, but one thing that does help is Kratom. Do not know if your wife has used this plant, but it definitely helps neuropathic pain. I use it 2 or 3 times a week. If you want to know more, let me know….Lori R.
Hi Lori, Terry here again. Do you take Kratom as powder or pill form? Any side effects? Thanks
@terrydclaar I now take it in pill form from ethanaturals.com No side effects but a bit of sleepiness, which I enjoy! Lori
Hey Wilcy did your memory ever come back? I got diagnosed with NEUROPATHY and the DOCTOR GAVE ME GABAPENTIN..I am forgetting simple things and even what day it is…I want to know if you got your brain back to function normally…I stopped the GABA on my own…Only after one month….I need to think as I take insulin and Glucophage and a blood pressure pill daily. THE GABA gave me some really silly side effects. I stopped it, is my brain damaged permanently? DOES IT COME BACK TO NORMAL? M.
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@margaretob Gee, I sure hope so! I hate what Gabapentin does to my brain.
Lori, I went to the ethanaturals website. They show 4 kratom pill products on their home page. Can you recommend one to try for PN pain? In the descriptions only the Sunrise specifically mentions pain. But perhaps you know more you could tell us. Thanks.
It made me forget too much and I started losing my hair. I am stopping it COLD….heard TUMS and antacids help the process to wean yourself off of it. THe first thing the doctor says is not to take antacids they make the GABAPENTIN less potent…M.
What I was told was that if it is still an issue two years out, it is probably here to stay. My main issue is the numbness also. My hands – I constantly drop things and cannot use a pen, pencil, paintbrush for very long at all. As an artist, that is the pits. My feet are dumb across the bottom back to my heel and it feels like I have little sand bags under my toes. They tingle all the time. I have to be careful about hot or cold but then if I stub my toe or hit my finger on something, it about puts me on the floor. It is not debilitating but it is aggravating and sometimes depressing.
I hope for you some relief. I would be interested inn what you find out from the neurologist. I will be starting chemo again soon and suspect mine my be getting worse – but then who knows. Good luck on that doctor visit.
@grandma41 yes, the Gabapentin caused dizziness for me. My husband takes it with no issues at all. I almost fell a few times and I decided it was not worth the risk for me. I did take it for a few months; long enough for the mmedication to have worked if it was going to. I may have helped a litte.
For the time that I was on Gabapentin, I fell regularly despite having two series of PT. Cymbalta and Lyrica also caused disbalance, without falls. In fairness, my feet are very numb and toes no feeling–except pain. The medicine. to eliminate that feeling are worse than the dizzy feeling–extreme sleepiness.
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