I used to post on this board A LOT years ago and haven't been back in awhile. I was bitten in 2004 and had major neurological dysfunction (encephalopathy). I was treated with oral and iV abx and the ONLY thing that really seemed to help me was the IV Rocephin as it crossed the blood-brain barrier. Eventually I got off abx and just tried every supplement, HBOT therapy, infrared sauna therapy...You name it, I did it. I could never really get rid of my last remaining symptoms which were severe fatigue, muscle tightness, and horrific nerve pain in my legs.
After trying everything under the sun, I've FINALLY found the combo that REALLY HELPS me: high doses of Vitamin D with another product called Nerve Shield by Redd. I take 8,000 IUs a day of Vitamin D. I believe this helps my nerve pain and helps quell the inflammation /immune dysregulation. It also helps my fatigue. Doses lower than 5,000 ius did nothing for me. The Nerve Shield product contains other ingredients I had tried separately like alpha lipoic acid but it's something about the combination in this product that has FINALLY given me relief from the pounding, pulsating, relentless nerve pain in my legs. It has also helped my fatigue. I got it from Sprouts grocery store. It may be at Whole Foods as well??? They didn't have it at the Vitamin Shoppe.
If you have nerve damage from lyme, when you start taking the Vitmain D in higher doses or the Nerve Shield, it can cause an INCREASE in the nerve pain the beginning. For 2-3 days, my nerves felt like they were on fire. I just had to fight through it. This combo has helped my fatigue, nerve pain, mental clarity, and stamina. I take the Vitamin D on one night and the Nerve Shield the next night. I ONLY take one pill of the Nerve Shield even though it says take 2. I'm only 115 lbs so that's why I take less. Don't take Vitamin D if you have hypercalcemia.
Anyway, I'm not a "Success Story" but I thought if someone out there today is suffering and has no hope, I wanted to share this. I've only been doing this for about 3 weeks, so I'll keep you posted. I just FINALLY feel some relief after 10 years, especially with the horrific pounding, pulsating nerve pain.
Hang in there!!!!
Posted by Rodeodancer (Member # 47623) on :
wow great to hear of your success, and thanks for coming back with some great advise.
Posted by hopingandpraying (Member # 9256) on :
Welcome back, Bugg and thank you so much for taking the time to write this very informative post. I am still searching for something which will help my son who still has chronic pain, irregular sleep patterns, chronic fatigue as well as memory problems.
I pray this be the answer for your all your suffering. My son has had the chronic pain for the past ten years and has been ill now for sixteen years. We have a phone consult next week with his LLMD and I will certainly bring this up to get his input.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click the pencil/paper icon, make your changes then click "Edit Post". Thanks.
Posted by ohioperson22 (Member # 47837) on :
I too have noticed a HUGE difference with supplementatl vitamin D. My 25-hydroxy Vitamin D levels were pretty low. My LLMD has me taking 5000 IU every day.
I feel much better. Still no where near 100%, though.
Posted by Lymetoo (Member # 743) on :
Thanks for your information, Bugg. I hope you continue to do well!!
I would like to caution everyone to be VERY careful about supplementing Vit B6. It can CAUSE nerve pain.
We only need a tiny bit each day and we get plenty from our foods. Many many people have B6 toxicity due to all the push to supplement with B6.
Posted by Lymetoo (Member # 743) on :
Just to add a point of clarification, I had tried the higher doses of Vitamin D on their own and they did help with the nerve pain and fatigue. But NOTHING helped the pulsating, raw, lack-of-stamina in my legs pain as the Nerve Shield.
I really believe I need both. I think the Vitamin D helps the inflammation and helps my immune system from 'attacking' my nerves and the Nerve Sheild helps the inflammation and helps calm the nerve damage from the neuropathy. (My Vitamin D levels aren't low, either.) I can't believe how much more stamina I have.
I really hope this lasts as NOTHING else has ever worked like this. Even B12 alone would cause my legs to throb worse...
Posted by Lymetoo (Member # 743) on :
That's awesome! It contains a lot of good things.. curcumin really helps me. Just wanted to warn about the B6.
Posted by bluelyme (Member # 47170) on :
Does tini and flaglyl deplete b6?... glad to hear about nerve relief...thanks bugg have u tried lions mane?
Posted by ukcarry (Member # 18147) on :
If you have pyroluria/HPU/KPU, you will need to supplement B6 and zinc, amongst other things, as people with this condition 'dump' them and can become very deficient.
Posted by hopingandpraying (Member # 9256) on :
Yes, Lymetoo, that is a good point about B vitamins causing pain. I had read about it in the past and our LLMD pointed that out recently. He had our son stop any supplements he was taking with Vit B in them and ordered a blood test to check his Vit B level (it came back normal.
I do think a clarification is in order, that is, poster Bugg is primarily supplementing with Vit D, not B. There is Vit B in the Nerve Shield supplement she is taking.
Here are the Supplemental Facts listed for Nerve Shield:
Supplement Facts Serving Size: 2 tablets Servings Per Container: 30 or 60 (bottle size dependent)
Contains No: sugar, yeast, wheat, gluten, dairy products, artificial flavoring or coloring, preservatives or animal ingredients
We are also looking into trying Theramine, a physician-prescribed amino acid which helps with pain. Unfortunately, insurance doesn't pay for it, because it is not considered a drug and we were quoted "$425 for a 30-day supply" at our local pharmacy as a result of that! We are in the process of looking for a much-cheaper source.
I should note that a friend of mine has a husband with MS. He takes Nerve Shield which really helps him. He started taking it because so many people with MS were feeling better from it.
The manufacturer says it can take up to 3 months to feel the full effect. My friend felt better in a month.
I think it started to help quell my pulsating nerve pain in the second week.
Posted by Lymetoo (Member # 743) on :
Right, hopingandpraying... I was just throwing this out there because I myself got into a bind with the B6. There are several facebook groups now devoted to helping people RECOVER from B6 toxicity.
"The recommended daily intake of vitamin B6 is as follows: 1.3 milligrams in men and women ages 19-50; 1.7 milligrams in men aged 51 and older; and 1.3 milligrams in women aged 51 and older."
Posted by Catgirl (Member # 31149) on :
Wow Lymetoo, I didn't know about B-6 toxicity. It's amazing how it's different for everyone.
I've read that most lyme patients have KPU (linked to severe depletion of B-6 and other specific supplements).
Dr. K has found it in about 80% of lyme patients and also in autistic children, so supplementation is required in order to heal. I believe the connection is heavy metal toxicity.
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