Neuropathy

Hello everyone, been having progressively worse neuropathy from my lyme for about three years. Got to a neurologist at the end of 2019 who diagnosed it as CIDP or chronic inflammatory demyelinating polyneuropathy. Guess its from all the time now of late stage neuro lyme. Anyway he treated me with high dosage prednisone and then 10 months of IVIG infusion therapy to no avail. 10 months!

Not sure what to do, I’m not in terrible pain but my arms and legs are so weak its ridiculous I almost cant walk. Anyone have any suggestions? Thanks.

Yes, EMGs done three times now he says theres neuropathy but I guess hes not saying its like crazy neuropathy. Very strange since what I’m feeling is rather intense. The dosages for the IVIG were 60 mg for the first three days and then every three weeks they would administer 45 mg for two days.

He has talked about cellcept as well as a couple things called azathioprine and mycophenolate however hes hesitant to prescribe them bc I guess its like chemotherapy and he says they can be dangerous.

Hes trying to pass me off to this rheumatologist I have been seeing bc I am also borderline for lupus however shes not really giving me that diagnosis and is treating me with plaquenil which isnt doing anything; I think you’re right and that I should get infused again, thanks for replying.

I am in NH and would be interested in the recommendation for the neurologist?

DCD2103 - Does he take insurance? Would he do telemed do you know if I had an MRI here in NH?

sdarrah - Have you had a nerve conduction study and EMG completed so it would show how both nerves and muscles are impacted?

It took trying two neurologists, who won't even talk about Lyme Disease, to have both performed. While I have been diagnosed with Sjogrens Syndrome, I'm not sure why the doctor wants me taking B6, B9 and B12 mix. Tests like homocysteine and some B 12s also help.

hateslyme - You saw no improvement on IVIG? I've read so many good things about it, and dcd, as you can see, has had success with it. Not doubting it but maybe the higher dose would help.

I believe I'm wasting time if I take the vitamin mix she has prescribed. Homocysteine is a little high but not out of normal high range. B12 is on lower end of normal. Seems it wouldn't be that. But knowing all that helps point to what may help, and IVIG seems a good move.

Sdarrah - Do you feel it is from Lyme or have developed an autoimmune? Also, it is a burning pain with sharp "jabs" at times or more tingling? I always thought mine was from Lyme or co-infection, which is why I didn't look into other causes. And, of course, going to a neurologist without a reason other than Lyme seemed like a waste of time.

If DCD provides it, we know it's good. Sorry you have so much going on with all this. It can get overwhelming. The neuropathy threw me with frustration when the EMG came back positive, though I'm glad there is no muscle involvement.

The worry for us all is stopping it before it gets worse, as hateslyme is dealing with. It gets in your head.

Have you tried healing your nervous system? The only way I know is with herbs, but it can be done. I was in a ton of nerve pain until I healed my nervous system.

Just a thought to ponder...

What I ended up using was only Avena Sativa - for years. I even grew my own oats so I could always be sure that I got the oats during their "milky stage" to make my tinctures with, as that is key to this herb working for healing the nervous system.

I did come across an Herbalists (that I trust) video that explains the use of Avena sativa, along with other herbs that create a formula to heal the nervous system, and while I do agree with his thoughts, some (or most for some of us that are sensitive) of the other herbs in the mix would treat infections, which would defeat the purpose of trying to calm and heal the nervous system.
https://www.youtube.com/watch?app=desktop&v=0a8r_z9auhw
The formula that he uses is as follows:
The formula mentioned in the video is as follows:

Avena sativa (Milky Oats seed) 20%
Scutellaria lateriflora (Skullcap) 20%
Hypericum perforatum (St. John's Wort) 20%
Lavandula angustifolia (Lavender) 10%
Ocimum sanctum (Holy Basil/Tulsi) 10%
Melissa officinalis (Lemon Balm) 10%
Turnera diffusa (Damiana) 10%

For more free videos and training, be sure to visit our blog at: http://www.evolutionaryherbalism.com
I had to give credit where credit is due! =)

On its own, I believe Avena sativa to be a very safe herb. I used it multiple times a day, every day for years and it alone was able to heal my nervous system, but as with all things, your mileage may vary of course.

I used it twice daily in cold water to generally heal my nervous system (mind you, I wasn't so sure it would actually heal my nervous system, considering I had these infections for so long, but I was pleasantly surprised!). I would also take it during the day when I got really upset and I could feel my nerves just wreaking havoc on everything. I would put my dose in hot water, as it seems to activate it to disperse more quickly.

My symptoms were that everything made me hurt. If I got startled, which was simply someone walking around a corner when I wasn't expecting it, pain would shoot throughout every nerve in my body. I also jumped when startled, so some thought it was funny, until I explained the amount of pain that caused each time. I had a ton of muscle twitches, spasms, cramping, headaches for no reason (some severe), meningitis type symptoms, facial palsy, vision issues, fatigue like crazy, memory issues...oh, the oddest one was that my legs would just lock up on me while I was walking. I literally couldn't move them, no matter what I tried. After I relaxed for about 30 minutes, I could usually walk again though.

For a few years, I also experienced spinal pain - the pain engulfed my spine, which meant things like arm/hand and leg/knee/foot pain too. Fortunately, that symptom didn't happen the whole time I had these infections!

I do hope this helps! And, if you have more questions, please ask!! My life story is pretty much already posted on this forum (lol), so I don't mind answering most questions. =)

Traveler - First, good to see you active recently on the forum. You have always mentioned Lion's Mane for nerves, if I remember correctly. Did you stop it and use the other? Both? I've been taking Lion's Mane now for about 6 weeks to two months. Wondering if one is better than the other. Or of the actin of one is different from other.

Thanks for that information, Penny. I researched to find I can actually take ALA as it also can help with kidney disease. How much did/do you take each day?