anyone from massachusetts??
AnonymousAugust 11, 2008 at 2:40 pm
this is my first post. hopefully i don’t mess it up.
guess you can guess why i’m here. still not positive if it’s gbs or cidp. but i will have my first ivig tomorrow morning.
i’ve been reading post by post, story by story. we’re all in this together, eh?
so, i will tell you this much. i’ve read the posts on ‘alternative’ treatments, and will tell you that i am an organic farmer, practicing herbalist, practice homeopathy, and have raised my children without pharmaceuticals. i’ve also worked at a natural pharmacy as the consulting ‘witch doctor’ and nutritionalist.
i started having symptoms in jan 08, and finally got diagnosed at the ms clinic at beth israel in boston.(one of the few western medicine clinics that recognize complimentary treatments) unfortunately, i was ‘kicked out’ ’cause i don’t have ms, and now am in the regular neurological department, which lacks the compassion and recognition to treat the patient, not the symptom. I have been doing some supplements that help my hand strength, and fatigue, help with sleep, and allow me to take larger stride steps, which i need a cane to assist with.
i think personal choice in treatment is like personal choice in anything else, religion, politics, etc etc etc. doesn’t make one right and one wrong, just different. i plan on trying the ivig, but will also utilizes the other modalities that will be useful. accupunture, massage, herbs, and nutrional supplements (because our food lacks nutrition).
i hope we can all use this community to share info and support each other. this disease sucks big time, and I thank the posters for all the info that they share. it sure has enlightened my knowledge of the disease, and i know it will continue to do so
AnonymousAugust 11, 2008 at 3:46 pm
See how the IVIg does. IVIg is one of the big guns used to try and stop the advance of the attack on you nerves. If is stops the advance, your next step is probably going to be rest. Where you go from there be based on how you feel and the quality of life you want. I think some people here have tried the homeopathy approach. Hopefully they can tell you what worked and what didn’t. However, remember each of us seem to react differently. We all have the right to chose. The hard part is to find what choice works best for you.
Go luck with your IVIg. Hopefully that will halt the attack.
AnonymousAugust 11, 2008 at 3:49 pm
Is Florida close to Massachusetts?? Just kidding, but welcome to the Forum. You will find a LOT of very helpful people here at all stages and with a wealth of information.
Interesting background you have too as I am very into eliminating pesticides, etc. and preservative free, etc. Good luck on your IVIG tomorrow too! When I had my first dose, I had several hours of all I can say is miraculous recovery on the third or fourth day. After having my walking messed up for so long, I was ecstatic, so hopefully you have good results too! Gabrielle
AnonymousAugust 13, 2008 at 10:19 am
Dawn welcome to the forums. I look forward to hearing how you are making out and how the herbal/natural approach is working for you. I take herbal supplements and vitamins as well, and am trying to avoid the pharmacueticals but it is not always possible. Good luck and look forward to more posts from you.
AnonymousAugust 15, 2008 at 8:57 pm
I’m not sure as to how the herbs are helping. I finished my 4th ivig today. Last night after the 3rd, I experienced a headache and nausea for the first time. However, that could have been eating at Chili’s on the way home from Boston! lol (I have to thank my driver’s with their choice of lunch places, wouldn’t have been my pick) I woke with headache/vomiting this morning on the ride in, and when I got there the nurses called the doc and told me they were told to withhold the infusion, to go over to the docs office! I refused, had them call the doc and spoke to her explaining that it was probably the combination of little sleep, bad food, air conditioning on the unit, bright flourescent lights and the travel back and forth everyday. I told her that my vitals were all excellent and if I thought I had meningitis, I’d be showing more intensive signs because I know my body! She agreed to the infusion and my headache and vomiting cleared in an hour.
I take herbs as part of my diet, add the ones that aren’t part of it. I take Resversatol, Neurozyme and Zyflammend from New Chapter, and the usual vitamins-a daily vitamin/mineral, vit E, Quercitin (a bioflavanoid, a sublingual B-12, and Calcium/Magnesium and Omega 3/EFAs. Of course I drink Herbal teas throughout the day, and take either Chamomile or Valerian/Lemon Balm/Chamomile tea for sleep. Now, having said that, the quality of the herbals and supplements are key, just like eating organically grown foods. I grow most of my own stuff, and buy the supplements from either the Natural Food Co-op that I run, or from the Natural Pharmacy that I used to work at. I make sure the products are organically grown, and harvested ethically. Don’t buy the box store brands as I don’t know the company and quality of the products. (some herbs have got bad raps for several reasons such as the processing of the herbs, and the wrong parts of the herb being used…..valerian, comfrey, kava.)
I think that is why I responded so well to the ivig treatment. I had my first sign that it was working after one treatment. I was hopeful that I would see improvement daily, and in fact have. Today is the first time in months that I could get off the toilet with my bench! That’s big! And I just got out of a chair without using my arms. I can also keyboard and use CAPITALS!!!! woooohooooo
I know that this could just be until the next flare up. I plan on going for accupuncture next week, and probably massage. I’m going to add Aloe Vera to the herbs, since it is used to rebuild cellular structure. And I’m going to start diligently to take my morning Green Vibrance drink. Some of the foods I will make sure I eat daily are Almonds, Apples, Carrots, Grapefruit, Oats, as they have some healing properties as well.
well, I hope this was helpful. I’m surely not recommending that anyone else go this route, I am only in charge of my own health, you know?
Have you had ivig?
AnonymousAugust 16, 2008 at 6:20 am
This subject is very interesting. I too am not using poisons on my garden foods and eat alot of fresh vegetables. Just started that this summer. Seeing too much cancer and too much illness and something on our earth is causing it. Just want to welcome you to the site and wish you well again!
AnonymousAugust 16, 2008 at 10:38 am
Thanks you for all the welcomes!!! It’s a good feeling to know I’m not alone in this!
It’s hard for well people to understand this thing, and harder for them to accept that their family member or friend is disabled, and hurting, when on the outside we look the same. I don’t think they can grasp the loss of the simplest things………cutting fingernails, opening a door, etc etc…….all things we take for granted. I’ve certainly been humbled in the last several months. And I’ve been awoke to how unfriendly to the disabled the world can be. I went to the UMASS Amherst Campus last weekend for a conference, in a wheelchair. Holy Moley, very very unaccomodating, hard to find ramps, bathrooms, and classrooms that were wheelchair accessible. It’s crazy!
Anyway, this forum has made me feel not so alone, so thank you to everyone!
AnonymousAugust 20, 2010 at 2:53 pm
I am originally from MA, but now live in Florida. I have been fighting this beast for the last 6 years. I was one of the unfortunate ones that had a bad reaction to IVIG, so that was the end of that for me. I just go day to day, and hope someone will come up with something the kick the h-ll out of this. Good luck with your treatment.
AnonymousAugust 22, 2010 at 11:14 am
I am diagnosed with CIDP bases on EMG testing, nerve and muscle biopsy, and spinal tap. Since Oct. 2008 when my condition worsened after a bout with a virus I have ha IVIG, Prednisone, Plasmapheresis. Nothing worked and lots of nasty side effects.
Ten months ago I went to St. Elizabeth’s for a third opinion after my local neurologists only recommendation was continued PF which is not a practical alternative due to cost and logistics.
Point of interest: The new doctor said that I had not had enough of any of the previous treatments to have made any difference. There are a lot of other treatments available, albeit more aggressive and with less history.
I was put on cytoxin nine months ago. It did not work either.
I have just started cyclosporine and hoping for the best.
I have a lot of fatigue with the cyclosporine. I would appreciate learning from you what herbs, etc you found improved your strength.
Thanks and good.
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