posted
Has anyone with severe neuropathy been helped by Dr.S protocol of Questrian and or IV infusion of fish oil lipids?
Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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Can you explain what kind of symptoms you have with your front legs? For the past year I've been having stiffness, tingling, buzzing and mild fat atrophy in my right lower legs. It's very scary.
Posts: 29 | From toronto,ontario.canada | Registered: Jan 2004
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posted
HI I am interested in prodicol that will help with nueropathy/burning, for I have it ALL over my body. It is very severe in feet, toes, and lower legs. It is accompanied with twitching. I am being treated by LLMD in Mo. Thanks BJG
Posts: 468 | From IL | Registered: Oct 2003
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aaronkatie
Unregistered
posted
Hi, I also have severe neuropathy in my legs (well they are the worst). My new llmd has me on topamax and lamictal (I also have seizures so i am not sure if he meant that those meds cover both but wrote that they were for pn.
He did however say I should get alpha lapoic(sp???) acid - he said that is very good for neuropathy along with all of the b vitamins.
I know of people who have taken questran and feel better but I've never heard them say that their pn is better - but its a good question!
I hope someone answers this thread who has had experience with it, I'm interested to know the answer too!
posted
I haven't had a doctor tell me I have neuropathy, but I do have pain in both feet and left leg. It was first diagnosed as sciatica, but that was inaccurate. My nerves test okay, and I'm not sure if that rules out neuropathy. But I know what I feel.
Both feet feel cold when sitting or lying down. My left hip area burns almost constantly. When standing or walking, my feet burn. It's a significant distraction.
I was on Mepron for 3 weeks and I've been on Biaxin for about 5 weeks now. My pain used to range from about 4 to 8 before treatment on a scale of 1 to 10. But now I've had days when the pain may have been as low as 2. It's hard to say, but I felt better. But I've had this pain for 15 years, and I suspect I've had Lyme/Babesiosis for 25 years. So it will take quite awhile to get to healthy levels.
I've read posts that claim that a side effect of Flagyl is peripheral neuropathy. My doctor wants to put me on that next, and it scares me. On the other hand, I've read posts where people claim total improvement after three months of Flagyl. I'll talk to my doctor about that. I'll also ask about the B-12 injections. That sounds promising. Thanks.
Scott
Posts: 112 | From St. Petersburg, FL USA | Registered: Aug 2003
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posted
dear Lisa,I did the b-12 mytheo? for over 6 months, had no effect on me at all. Am going to start on Questrian and an iv infusion of fish oil lipids, Dr.B said that I may need more than one. So far , nothing has hepled my neuropathy whwihc starts in my teeth and goes all thru my body, horrible, and getting worse. have had Lyme since 1986!Tests are all negative now, incluing my Emg nerve tests, but the neuropthay lingers on, very painful. Hope that this works for all of us?
Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Our LymeNet veterinarian (screen name "free2reckon") suggested alpha lipoic acid (ALA) since diabetics who have a lot of peripheral neuropathy use it.
I bought some for my husband who can't sleep at night because of pain in his feet (not Lyme-related). He slept the very first night.
I also buy Blue Emu (cream in a jar) at WalMart and rub it on his feet and ankles. There is some MSM in that Blue Emu cream, and I don't know what else (besides emu oil), but he won't go to bed without using it. So, it must be doing something.
However, the ALA is the one thing that's helped him the most.
He also tried acupuncture, which helped, but he didn't like to have to keep going back so he quit. Afterall, why should he when he has a wife to rub his feet for free, huh?
Try the ALA. It's a bit pricey, but cost-effective, we think.
posted
thank you all for the information about the infrared thearpy, but this is not like a diabetic neurpothay which has to do with circulation, which has to do with dcreased circutalion, all my emgs tests are noraml , so that means the nerves ending are not actually damaged, just so entremely irritated to the point of pain, I doubt that this treamtimet would help? But thnaks, anwyw,I really want to know about the fish lipids , if anyone has been helped by thi s please answer this, thanks. But am going to try to ALA again as Dr.B did put me on that once, but to no avail.this is a continung nightmare to have to be in this much pain every second!
Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Get the vitamin b complex and CQ10 and Magnesium.Should help body to rebuild nerve mylene.
[This message has been edited by treepatrol (edited 16 January 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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posted
Georgi.....I bet it would work for you. It's supposed to help with Fibromyalgia, and that's not neuropathy pain.
Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi all, Well after sitting up 2 nights in a row with throbbing pain in my left leg (sciatica/neuropathy), I decided to try alpha lipoic acid. Well..it has worked..and very well. I am stunned! I have to thank TX lyme mom for the recommendation!!. I will sleep tonight! I had read about the benefits of it for neuropathy and even recommended my father try it. After seeing my improvement and sitting up a few nights this week with diabetic neuropathy himself, he is going to give it a try. I took 300 mg and within an hour the vast majority of my leg pain was gone. I hear it can drop your blood sugar so if you are diabetic, please monitor your levels. I have also read that ALA is approved for the treatment of Neuropathy in Germany and has been since the 60's so it's track record/safety is very well known. Unlike Neurontin!!!! BTW I am using Vitamin Shoppe brand..35 bucks for 24000 mgs (240, 100 mg tabs).
Hope this helps someone else. If so..pass it along.
Posts: 20 | From South Central PA | Registered: Mar 2004
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posted
Georgi are you a patient of Dr. Shoemakers? I was for about 9 months, and although he does discuss his cholestyramine protocol in his book, in actuality he appears to be moving away from it, at least in our conversations. But then I was one of his "staph phage lysate patients that found out the hard way the dangers of unfounded new uses for products. He later told me that the "staph phage lysate" product had been a real problem being unstable after it infected a perfectly good tooth, killing the root in under 30 days, almost killing me. He is really pushing it, changing his prior thoughts on chronic lyme, to the "real" cause of CFS being a staph infection and this staph phage lysate can build up your immune system to resist it. I kept asking him for a lyme test, but he wanted me to have a staph infection and twice yelled at me that I did not have lyme. (I tested positive last month) I know that when he dropped me, it was the best thing that could have happened to me, but you always hate it when a doctor gives up on you. One day I asked him why he wanted me to take 10 fish oil pills per day, and he said , "Oh I just thought I'd try anything , even throw in the kitchen sink if necessary." I know that my condition worried him, my MMP-9 was 1400, and he is trying to show that staph is a factor in these illnesses, which can be. But somedays he was really pro-cholestyramine, and some days he wasn't. I think if he had better office staffing to help him, he would make much more progress. Because I slept so much I had trouble fitting all the doeses of the Qestram in and asked for the pill version , which does the same thing, only slower. I've also heard that any statin that binds will do the same thing.
who knows? Laney
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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posted
Lisa, I haven't heard others having this front leg pain like I have....till now. Let me ask. Is it like shin splints?
That is what mine is. It feels like hot lava is pouring down from just below the knee to the ankle along the tibia part. Such an extreme burning, throbbing pain. I would say it is my most constant. While I have many other pains, this one is always there. Even extending to the tops of my feet sometimes.
Laney
Posts: 44 | From San Antonio, TX USA | Registered: May 2004
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
I did ALA IV and have been treating the Bart w/Septra or Levaquin & Biaxin and it's helped.
Posts: 1010 | From Mars | Registered: Feb 2004
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