Severe nerve issues...Lyme vs CIDP?

That's a good question, Eric. I don't know what could explain the healing time after the inflammation calmed down. Besides nerve damage. It's only an inference.

I saw the facial nerve damage take a long time to heal. My son got hit with a plastic toy in kindergarten. A splinter broke off and lodged above his lip. He never cried. His face was numb at the time. After MB12 shots in conjunction with LDI, I watched his face wake up and watched him start mouthing everything as he had never done when he was a baby. A year later he was making progress in speech therapy after most speech therapists thought he'd need a speech generating device for life, like Stephen Hawking. And then one more year later he was speaking clearly.

What other inference can I make than facial inflammation of the nerves that caused damage that took a long time to heal?

If it could happen in the facial nerves where else could it happen? He had evidence of nerve damage elsewhere. He used to buckle at the hip when standing on one foot but only on the left side. Now his left side is just as strong as his right side.

If only he were telling me everything he was feeling and experiencing. What did I miss? Probably a lot. And doctors missed even more than I did. I have no doubt.

I'm sorry. I wish I could give you more precise information.

I'm looking into ivig. Are you referring to my neuropathy and or my bladder issues? Do you think it sounds more autoimmune over bacterial? Thanks

Post Edited (Eric H.) : 4/23/2024 10:02:18 AM (GMT-8)

I'm thinking actually that my son may be the type of patient that the LymeMD blogger doctor says is a hybrid of MCAS and Lyme. My son's doctor (not that one, a California doctor I work with remotely) is recommending a trial of Ketotifen, a mast cell stabilizer. I've never worked with the type of doctor who would have prescribed IVIG. So I don't know how he would have done on it.

The master herbalist Stephen Buhner wrote in his books that he thinks the Western medical establishment has a militaristic mind set. (Kill something, and then the whole situation will get better. Get in and get out and do a special operation, then the situation will get better.)

I think more and more doctors and patients are waking up to the need to pay more attention to "terrain issues" and not only "microbe issues" even when there has been microbial infection. COVID, cytokine storms, and long COVID have forced the world to reckon with the hornets nest that is our very own immune system.

Not every doctor has yet caught up with the changes in thinking and treatment.

Hey Eric H. Long time nerve sufferer here.

I can confirm that everything you are experiencing is tied back to neuropathy. A few points:

1.) You need an EMG and a nerve biopsy to confirm what type of neuropathy you have. Maybe I missed it as there are a lot of posts to scroll through here, but it sounds like your issues are mostly sensory and not motor. Are you having any motor issues?

If you are not having motor issues, this sounds more like a small fiber neuropathy (the sensory and autonomic nerves in your skin) vs a large fiber neuropathy (the large nerves that run up and down your body that control both sensory and motor function). An EMG will not test for small fiber, you need a biopsy

2.) There is a growing body of evidence that what is often called "interstitial cystitis" or chronic pelvic pain is highly correlated with small fiber neuropathy. You can google and find dozens of papers. The somatic and autonomic nerves in the area are often both affected. Sometimes the specific nerve you speak of is affected as well, which can often lead to the exact symptoms you are having. You are smart to have figured out which nerve.

I've seen anecdotal reports of people with your symptoms resolving on immunotherapy, specifically IVIG.

3.) With regard to your diagnosis. You have stated that it's clinical.

As Garzie pointed out, you can have both lyme and autoimmune. In fact if you have the former you often have the latter. And if you have the latter you can have the former as a possible cause.

It's very difficult to tease a lyme diagnosis from another autoimmune disease caused by something else without clear indicators of tick-borne infection (EM rash, known bite before onset, indisputable serology, etc) imho. Symptom overlap does not mean etiology is the same.

What I would say is that if you are sure you have autoimmune, which I'm near certain you do based on your symptoms, find out what disease you have and the cause. And then try to treat it.

There are many things which can cause immune mediated small fiber neuropathy. The #1 cause is sjogrens. It's very hard to test for as its usually seronegative, and many people just have the neuro-symptoms. This often gets diagnosed as UCTD. Rule out CIDP. All of the sjogrens adjacent diseases like Lupus can do it as well. Post viral/post vaccine is a huge cause. If you had covid or vaccine right before it began, that could point you towards one of those.

For treatment, IVIG is the first line. Some on here w/ these nerve issues have tried it, myself included. I need bigger guns unfortunately, but many do very well on it.

Eric H. said...
Are you saying it's possible I don't have Lyme and strictly autoimmune? Do you think the bladder symptoms/nerves can repair? Thanks

I dont want to say whether you have lyme or not. I do not know. I'm also sorry if I upset anyone on here because they've been gaslit enough. But the sad truth is that it's very difficult to know what causes an autoimmune disease. Post infectious is a huge cause, but there are other causes (vaccines, family history/genetics, surgeries, viruses, etc).

If you can point to a lyme infection with some evidence, then that's probably your cause. But if you are just going on symptoms, well imho the symptom overlap with other autoimmune diseases makes it difficult. Especially in your case which sounds more like autoimmune SFN to me.

What I am also saying is that if you have lyme and it triggers neuropathy, you have an autoimmune disease. So you might as well try to treat it. Most people w/ SFN need immunotherapy, esp those with lyme, and IVIG can be a game changer (i'd estimate it only works for 60% of people though, no immunotherapy is 100%. immune systems are weird).

Yes I think those nerves can heal. where are you located, i know of some drs who treat this particularly in the north east

dcd2103 said...

Eric H. said...
Are you saying it's possible I don't have Lyme and strictly autoimmune? Do you think the bladder symptoms/nerves can repair? Thanks

I dont want to say whether you have lyme or not. I do not know. I'm also sorry if I upset anyone on here because they've been gaslit enough. But the sad truth is that it's very difficult to know what causes an autoimmune disease. Post infectious is a huge cause, but there are other causes (vaccines, family history/genetics, surgeries, viruses, etc).

If you can point to a lyme infection with some evidence, then that's probably your cause. But if you are just going on symptoms, well imho the symptom overlap with other autoimmune diseases makes it difficult. Especially in your case which sounds more like autoimmune SFN to me.

What I am also saying is that if you have lyme and it triggers neuropathy, you have an autoimmune disease. So you might as well try to treat it. Most people w/ SFN need immunotherapy, esp those with lyme, and IVIG can be a game changer (i'd estimate it only works for 60% of people though, no immunotherapy is 100%. immune systems are weird).

Yes I think those nerves can heal. where are you located, i know of some drs who treat this particularly in the north east

Do you think my bladder nerves can go back to giving me sensation to urinate again? It's been 9 weeks so far 😔 I'm from Indiana btw.

dcd2103 said...
Yes. Sent me a direct email you can see my email on my profile

I emailed you.

If the nerve doesn't die it can heal to an extent. Once it dies it can't heal.

Hyperbaric oxygen therapy helps all sorts of wound healing, from diabetic neuropathy and non-healing diabetic foot wounds, to post-surgery healing, to post-cancer treatment recovery. It has actually become mainstreamed under the category of wound care.