• Anonymous
      March 30, 2010 at 11:59 am

      I’m starting to look at “other options” as far as treatment of my neuropathy goes. Have any of you used Elavil, and if so, what has been your experience? My GP is starting me on that today to see if it helps with the nerve pain.

      I also have an appointment today to talk about the possibility of all this being caused by, or at least aggravated by, either Celiac disease or Candida. Anyone have experience with this conditions, and has treatment of such helped with your neuropathy symptoms?

      Thanks for your input!


    • Anonymous
      March 30, 2010 at 10:06 pm

      [I]Elmo, I haven’t used Elavil, but it is used by folks with chronic disease, a relaxant primarily. It’s was an anti-anxiety med to begin with.

      Personally I don’t see candida or celiac problems as causing or contributing, but I am not expert.[/I]

    • Anonymous
      March 31, 2010 at 12:33 am

      Elavil is an anti-depressant and I haven’t never heard of it used for neurapathy before?? Why does your doctor think it’ll help with nerve pain?? It may knock your socks off as can be very sedating.
      Sleep, yes. Pain, No.

    • Anonymous
      March 31, 2010 at 7:45 am

      [FONT=”Microsoft Sans Serif”]hi elmo,

      just be careful– it causes major weight gain! i tried it years ago– while in college– it makes you feel so relaxed and acts a as a wonderful sleep aid. it’s a shame about the weight gain. i gained almost a pound a day!! and that was with my usual vegetarian diet and steady exercise.

      it’s part of the old tricyclics and have been used less since the development of ssri’s. here is a link: [url]http://en.wikipedia.org/wiki/Amitriptyline#Side_effects[/url]


    • March 31, 2010 at 9:51 am

      Hi Elmo,
      I have heard of cymbalta being used for pain and anti depressant, maybe elavil is being used as such now? I have never heard anyone here mentioning that, perhaps it is a new component of the drug they are exploring.

      About the celiacs/candida. Have you had a ncv/emg yet? Sorry I can’t remember, I just know you have been searching for a dx. Have you ever had an l/p? Did you finally get confirmation of cidp? I only ask to see if there is definitive criteria you have met diagnostically besides clinical presentation. If not, then I agree with you it would be a good idea to explore other options of cause of your symptoms. Is it possible you had a mild case of gbs as Jessica describes? That was something else I was wondering. Have your current neuro symptoms increased? Is there more tingling, pain, numbness?

      Well about the celiacs/candida. Have you been tested for celiacs, was your ttg blood work ok? Have you had an allergy test to see if you are allergic to wheat? Those would be the first places to start. If you had celiacs, you would be alergic to most things we eat, the allergens being released into the blood stream cause neuro toxins which cause inflamatory processes. It could be you have cidp or some other issue in addition to the celiacs which irritates the inflamatory process. You would be surprised how many things contain wheat. Sugar is an issue too. About the candida, Everyone has candida, good/bad as I am sure you know. I am not sure if a standard western medicine stool sample tests all candida good/bad and tells you the amount you have of each. The comprhensive one we did through the naturopath lists all bacteria present and rates the amount you have. For instance, you should be at a 4+ for healthy gut flora, nost of ours were ng=now growth and a couple were 1 and there was one 2. This is because the bad candida has cancelled out the good. As well, it goes into 2 other categories, the last being dysbiotic whic is very dangerous to the system. Thankfully we were not there yet. I will know more about the regular type of stool sample readings in a few weeks, as we did go to the gastro to get nystatin, hoping to quickly irradicate compared to the slow natural process with the natural stuff. So I will let you know how those results are read. The thing with nystatin, we will kill all candida, good/bad. I think it is worth it for how bad his symptoms are. The entire candida/neurotoxin/allergy think is a long post, so try to see one of my old posts about leaky gut and it talks about increased mast cells which cause increased hystamines which cause allergies (wheat) that lead to other things besides allergies like celliacs etc. Keep us posted.

    • March 31, 2010 at 9:58 am

      I forgot to add, we have been on the natural stuff (a bunch!) for about 3 weeks now, some symptoms such as headaches, inability to sleep, concentrate, pain are less. Is it becfause candida is dyying or because I have removed all that we are allergic to to the best of my ability (sugar, cows milk, cheeses. etc) Incidentally the things we are allergic too encourage additional yeast growth, so their removal has helped too (sugar, cheese cultures) Sugars also increase inflamatory processes. Just an idea.

      So yes with the neuro toxins being removed, it does seem to be helping.

      Have you gotton any cidp diagnostic tests yet? Regarding treatment paln, is the doc calling the elavil a treatment option? It will only take away the symptoms (possibly, not sure if it works for nerve pain) not do anything to stop demylienation process. Good luck today.

    • Anonymous
      March 31, 2010 at 10:06 am

      [FONT=”Microsoft Sans Serif”]nice info dawn– and am glad your efforts are helping kevin!

      also, to be clear elmo, amitriptyline (Elavil) is a tricyclic antidepressant– used to treat major depression. there are several “off-label” uses, but depression was and is its primary function. a great drug– just a weight-gainer– yikes.

      i still use cymbalta for nerve pain as i continue to heal– it too is an anti-depression but is also fda approved for diabetic neuropathy… i found/find it helpful… and i hear there are others in a similar class that are helpful.

      best of luck.[/FONT]

    • Anonymous
      March 31, 2010 at 10:18 am

      Have to get to a meeting, but wanted to post a few things before…

      As to my symptoms, current status: I’m probably grasping at straws here, because no, I don’t have a dx yet, other than “Peripheral Neuropathy of undiagnosed origin”.

      My symptoms are increasing…and are as follows:

      *Decreased sensory input in my lower legs…basically the textbook “stocking” pattern. Very little temperature sensory input…everything feels “lukewarm” in my lower legs…even “scalding” water.

      *Fasciculations: They are getting very bad, especially in my arms and hands, and have been observed by my GP during visits. I’m more concerned about what feel like fasciculations in my trunk area, especially my lower abdomen.

      *Pain: The pain that radiates from my Brachial Plexus region, down my arms, into my wrists and hands is, at times, excruciating, even though I’m on 300 mgs a day of Lyrica. Opiates seem to do little with this pain when it is at its’ worst.

      I have not had a recent LP; for some reason, everyone to date has seemed to want to rely on the results of one from nine years ago. I’ve had trouble convincing anyone to repeat this test.

      I’m really surprised that none of you are familiar with the use of Tricyclics for nerve pain. I’ve seen a LOT of websites, like the one posted below, that say they are one of the first choices in dealing with nerve pain.



      The latter of those two links states, “Tricyclic antidepressants are among the first line treatments clinically recommended against neuropathic pain.”

      The reason I started wondering about Celiac and/or Candida is that I’ve also had chronic sinus problems, requiring two surgeries to date, and I’m looking at another this spring, unfortunately. My neuropathy all started after my last surgery, last spring. I’ve had several occasions where I’ve had to take multiple AB courses, over a period of six months. For example, last year, before my sinus surgery, I was treated for a chronic sinus infection for over six months, receiving 4-5 different AB’s over a six month period. This can really screw up your gut, and has at times caused episodes of colitis, etc.

      I was wondering if my chronic sinusitis could be caused by an allergy, so I started doing some “googling”…and found that Celiac’s Disease can, and often DOES, cause “muscle cramping, neuropathy, back pain, weakness and pain”, etc…many of the symptoms I’m having, and that others report before being diagnosed. I’ve also read that Celiac’s is considered to be grossly under-diagnosed in this country.


      Celiac is also seen a lot in conjunction with Fibromyalgia, Peripheral Neuropathy, Addison’s, Candida, Chronic Fatigue, and Sjogrens.


      So, as I said, I may be grasping at straws, but am interested to find out if I have a problem with either of these two, and if that may be at least contributing to some of the neuropathy symptoms I am having.

      Guess I sound kinda desperate… 😮

    • Anonymous
      March 31, 2010 at 10:27 am

      Not desperate, celiac disease is one of the things that should be ruled out.

      I was on Elavil very briefly, it caused massive fatigue and did not improve anything. Worth a try, but if you drive be very careful when taking it, especially until you know what it does to you. I had problems due to the fatigue.

    • March 31, 2010 at 11:58 am

      OMG Elmo,
      This is what I have been taling about for the last 6 months, sounding borderline neurotic and obssesive. OF COURSE AB CAN BE THE CAUSE OF THE CANDIDA! Because I like you and Tickle me Elmo, I’ll write again! First, were the sinus issues ever determined to be fungal? If so, it would be indicative of a systemic fungal infection, ie, the gut. When the gut get the candida the mucosal lining is eaten up by the candida therefore causing leaks in the gut/intestines. This is how the allergies build because of the mast cells and hystamine production. Then it all leaks out making neurotoxins, neuro being the operative word. My thought is that the reason we get several autoimmunes is because everything builds on the gut where 80% of the immune system is centered. Celiacs would be a natural progression in that your body is reacting to the new allergies. Now the attack is starting to affect other organs because the gut (next in line for defense mechanism, tonsils adnenoids being first) is not working. Soon, kidneys liver etc sart working harder. People w/lg also have higher cholesterol because liver is over worked with additional neurotoxins that escape into blood as a result of leak. Now that organ has to do regular food cleansing (fats) plus these extra neurotoxins. It is all connected. Once the immune system (in the gut) is compromised, everything goes haywire. Why the reluctance for the l/p on your docs part?

      If ttg comes back celiacs, i would ask for allergy testing. Rast only does Ige, instant reaction. There is Cap rast, not sure if it just tests more things or has Igg Iga reactions and is closer to elisa. If your insurance covers elisa, ask for it!!

      You are not grasping at straws. Unfortunately docs treat each individual symptom and not the cause. Our possible trigger was surgery too. had tonsils /adnoids out and always tired and legs hurt after that. Only 9 y/o so the communication was a little difficult. As well in that time frame we were stung by 3 bees, perhaps the body fighting off a severe allergic reaction is what cuased the trigger. Anestheasia CAN trigger the immune system. We now only use twighlight if possible. If not possible, a neuro aneasthesiologist told us to follow with a dose of steroids.

      Allergies may have been your sinus issue or fungal, surgery could have been the trigger and here we are! Did you ever take steroids for the sinus issue, they too cause candida. Keep us posted, sorry to rant, I just am so hopeful that erradicating our candida and things we are allergic to might help with our cidp pain/symptoms.

    • Anonymous
      March 31, 2010 at 2:27 pm


      I’m pretty sure that I took some steroids to try and reduce the sinus/nasal inflammation, and I’ve also taken several courses of them recently to help with the nerve pain. That worries me, when I read that steroids can cause Candida imbalance. The consideration for people here, I think, would be the stories I hear of people taking mega-doses of steroids…are those actually adding to the problem?!?

      I also became interested in all this because I’ve been doing some research for one of my daughters who is showing signs of a yeast allergy.

      As to the LP, as I said, I’ve only been given the impression that everyone seems content to rely on a 9 year old LP.


    • Anonymous
      March 31, 2010 at 5:20 pm

      I have heard of anti-depressants being used for nerve pain. My neuro says that the area in the brain that the anti-depressants work on is the same area for pain, but of course it does not work in all people the same. I tried Elavil because it is an older drug and has been around for a long time, some of his other patients use it and it works for them. I could not take it, because it did not work for me and also it made me soooo tired I could not function. I did try Cymbalta that did work wonderfully for me, but after a while I had excessive sweating that I could not tolerate after a while and also had a very, very dry mouth. I was really dissapointed that the Cymbalta gave me those side effects, because it worked so good for me. Now I am in a lot of pain and my doctor has upped my IVig dosage and I am getting it once a week for a month to see if that will help.

      Clare in Michigan