Hedley LaMarr

Your Replies

  • January 13, 2021 at 7:43 am

    Hello: Has anything changed since you last posted about CBD? Have you continued with relief? What dosage are you taking? I use Gabapentin and would like to change over. But I need to know how much and what brand name to use. Can you help me understand how to get started? Must I visit a Neurologist? Can my Internist help me? Gabapentin is no longer helping and a side effect for me is incontinence. Please write if you find the time.

    December 29, 2020 at 11:20 pm

    The Foundation is not fence sitting. I just read their open letter to Dr. Fauci. It refutes his advice and rightly so. This is the same Fauci who said that Covid was not coming here. I apologize to the Foundation. But the letter was not easy to find. It should be bold and up front.

    December 29, 2020 at 5:26 pm

    In 1978 nearly two hundred people contracted GBS after getting a flu shot. My thought is that the batch of vaccines were faulty. It happened with the polio vaccine as well. A few dozen people died and they tracked the vaccine back to a producer that made a bad batch. They resumed the program after that and everyone got the polio vaccine. I had GBS in 2009 which followed a bout with the flu. My flu shot was in mid-October 2008 and I got GBS in February (6th)of 2009. The gap in time was too big to blame the flu hot. Nonetheless, I avoided vaccines for 10 years. This year I took both the flu shot and the pneumonia shots. Dr. Fauci was the one who said that Covid was not coming here! He flipped on wearing masks and made other dumb predictions. I just took two vaccines and I’m still standing. I will take the Covid vaccine. I notice the GBS Foundation is fence sitting. They’re no help.

    March 9, 2020 at 9:32 pm

    I guess what I was asking is whether or not our post GBS immune system is strong enough to push back against infections or viruses. But I believe a blood test may reveal that fact. I’ll have to ask my doctor. It may be the white cell count or lymphocytes. Maybe a CD 4 test, the one they use with HIV patients to measure their immune system. Buy thanks for the answer.

    July 24, 2019 at 8:34 pm

    There is some talk about using marijuana w/out the component that gives you a high. It’s CBD I think. Has anyone asked about that?

    January 25, 2019 at 10:02 am

    I’m considering using it. What is the proper balance. I’m not interested in getting high. I’ll use a martini for that if it’s safe to mix…….?? Do you know? But please tell me the proper mix of CBD and THC. What doses are we talking about? Thank you.

    January 25, 2019 at 9:58 am

    I live in New York and it’s legal. You mean that we cannot get it b/c it’s not listed? Why the hell isn’t it? Can you verify that?

    January 25, 2019 at 9:50 am

    This has been tricky situation for GBS people. Doctors are not consistent with the drugs of choice. I am 10 years out from AIDP and my feet are always flaring with “electrical currents” which I call paresthesia. I take Gabapentin (neurontin) but it causes nocturnal enuresis (bed wetting). So I cut the does to only daytime use. However, I once asked a doctor, who had GBS himself, what he takes. He uses Gabapentin and amitriptyline together. I never took the advice b/c I stay away from anti-depressants. I’m not depressed! But that was stupid. If it works, you should use it. Ask about using that combination. Meanwhie, I’m considering Lyrica if I can find GBS people here who use it. I read about the side effects and it scared the hell out of me. But getting back the to the pain. You have to find what is good for you. I tolerate the pain most of the time. Talk to the doctor about that combo. Good luck.

    July 24, 2017 at 4:49 pm

    Alcohol has definitely made the nerves in my feet flair. I like the theory Norb puts forth about myelin stripped nerves. The days they flared was when I went over the line. Some days I forgot my meds, etc. Alcohol is like throwing gas on the fire. People do not understand parethesia. I tell them it’s like when your foot fell asleep at the movies. Except we have it 24/7. My feet (both drop foot)are humming all the time.Numbness and tingling. Nprb is on the right track. Cause and effect.; I drink too much and the feet flair. High pitch pain as opposed to low pitch numbness.

    December 21, 2011 at 7:30 pm

    I think I started a long discussion on marihuana but it was not my intent.I simply wanted to get off these meds because they did not help with paresthesia. After nearly 3 years of GBS I know there is no med for this, so if marihuana helps go for it! There are other RX meds of the anti-depressant nature that may help tell the thalamus that everything is just fine today. That is a diversion too. Jack Daniels has provided that as well. The nerves in the body are devastated by this illness. They either grow back or not. If not, you remain in distress. One man’s opinion. Thanks for all the feedback. Happy holidays.

    December 5, 2011 at 9:51 pm

    I see that pain and paresthesia get mixed up together. I spoke with a neuro on the board who advised that PERHAPS a mixture of Neurontin and a antidepressant might help. But he did not sound sure and said I might try it. With no direct evidence of it helping, I passed on the suggestion. My own Neuro said I could try it, but he too did not sound like he knew it was a treatment for paresthesia. Three years into the illness and I cannot find a med for this problem. I’ll try one more time with my neuro and pin him down. Does he know anyone it helped? I think not. I think when those nerves are stripped and damaged they are like live wires transmitting lots of static. Weening off my take scaling down…..I’ll ask him or my druggist. Thanks as usual for your answers.

    November 27, 2011 at 8:18 am

    Tell your doctor about this because it may be a medication that is causing this urge to sleep. OK? Always talk to your doctor first.

    November 21, 2011 at 7:55 am

    I had two treatments by one of the best doctors (Chinese) and jhe stopped them. He did not see any response. I was glad because the post treatmentpain was lousy. Good luck.

    November 9, 2011 at 8:06 am

    There are a few anti-depressants, but first tell your doctor to consult with Dr. Steinberg at the Foundation. Let the doctor phone the Foundation and ask for Dr. Steinberg to return the call. He can ask him about your case and the mixture of drugs to deal with pain. Heavy pain killers like narcotics would be my last resort.

    November 6, 2011 at 8:13 am

    Consult your doctor. You are near the upper limits now as I recall. Also ask your doctor about a combination of drugs to deal with the pain. The other drug is an anti-depressant that seems to help some when used with your neurontin. But remember, do nothing until you speak with your doctor.