Severe nerve issues...Lyme vs CIDP?

Throughout the past two years when all this started it's been all neurological. Started out with my arms feeling weak and numb and progressively spread downwards to my legs. My legs (calves) being the worst with 24/7 numbness and fasculations for two years nonstop but everything else is getting worse as well. The backs of my thighs numb, butt cheeks, started going into my hands finally a couple months ago etc. The one thing I noticed from the very beginning of all this was everything is symmetrical. If one side of my body is flaring up somewhere it starts in the exact same spot on the other side at the same time. Same as when things settle down some. Everything is mirrored. 8 weeks ago overnight I started having bladder issues. I lost sensation of when I need to go. The nerve signaling is all messed up from my bladder to my brain. I've just never heard of anyone losing the sensation etc. it's typically the opposite and feeling the frequent urge to go. I have had a lot of pudendal nerve pain over the past few months which I think has to do with it. If anyone has any ideas there I would appreciate it. I hope it's not permanent. I know CIDP is rare but I do have alot of the symptoms. I also deal with other neurological issues that don't really check that box. How would you decifer the two when in my situation?

Post Edited (Eric H.) : 4/19/2024 11:43:42 AM (GMT-8)

emma blonde voyage said...
An EMG test can tell you whether you have demyelinating neuropathy or not

I was hospitalised for sudden onset of neurological symptoms, which included the loss of sensation of needing to go to the toilet. There are other people out there with this symptom! I was later diagnosed with injury to the perineal nerves

Was your perineal nerves caused from neuropathy? Did you get sensation back? I forgot to mention I have had pudendal nerve pain for months. Is this permanent?

Post Edited (Eric H.) : 4/19/2024 11:42:29 AM (GMT-8)

emma blonde voyage said...
Peroneal nerve injury is a type of neuropathy, it's damage to the peroneal nerves

Have you been to a neurologist about your symptoms? Have you had MRI or brain / spine? and NCS and EMG tests? I can't remember if this was already discussed in your previous posts sorry

I recently had a spine MRI done and had a brain MRI a year ago in March. I had an EMG done about two years ago well before things got really bad with me. Do you have bartonella by chance? Can the bladder nerves repair and signal right again?

Garzie said...
we see this type of question a lot

it takes teh form of
" lyme can cause symptoms similar to condition X - but so can auto-immune disease
i have symptom X - so how do you tell if its condition X or lyme disease?"

underlying the question is a kind of inherent assumption that its an "either/or" situation
i think you see where i am going here ...

our brains naturally default to this paradigm when faced with choices - but in actual fact we do not have good reason to believe this is in fact an "either/or" situation

in fact we have the opposite
there is very good evidence that lyme and/ or co-infections cause auto-immune disease( not just mimic it)

for example
various auto-antibodies have been found in lyme patients in scientific studies - including anti-phospholipid antibodies
and chronic lyme patients are diagnosed with many autoimmune diseases at much higher prevalence than the general population

several LLMDs have said up to 30% of their patients have hashimotos - eg Dr J, Dr H
as well as hashimotos, Sjogren's, Stevens-Johnson Syndrome, Raynaud's disease, psoriasis, lupus and various auto-immune neuropathies many others are all reported with much higher frequency than average in this patient community.

this means that if you have a Lyme diagnosis ( or any other chronic infection) - and an auto-immune disease - the two are not mutually exclusive - and in fact its highly likely that the infection triggered the auto-immunity

i hope its of some help

I'm clinically diagnosed. I have horrible full body neuropathy and have for awhile. I'm honestly just really scared and my mind is all over the place. After it finally messed up the signaling to my bladder/brain I felt all hope was lost. Idk if I'll ever or can ever recover from whatever is going on. I can't make sense of what could cause something like this

I am going to offer a different potential cause. And it should by all means give you hope in this fight. Overnight last year I experienced similar issues. Constant need to urinate, bladder just ached. I then had trouble urinating - and let me tell you the brain goes into a fight or flight mode like never before. After visiting urology (mayo) and testing negative for everything under the sun my urologist looked at me and said "boy, your really messed up your pelvic floor". I scoffed at his comment knowing Mayo's position on lymes but the further I got down the rabbit Hole I realized stress played an important factor in my symptoms.

I have been battling Lyme, Bartonella and babes (Igenex confirmed) and my body was in a constant fight or flight state. This had caused significant tightening in my pelvic floor. As it worsened so did my tension and anxiety.

I would recommend a couple things - with no promise that this is exactly what you are experiencing:

visit: www.curecpps.com - stretch like mad and meditation twice a day calmed my fight or flight.

I have a prescription for diazepam when it gets bad, this helps when youre in a pinch.

I had appointments with a pelvic floor PT specialist as well. Now this gets a bit graphic but they do internal work to release those tight muscles. This helped a lot, and I am now able to release those on my own with a wand of sorts.

My experience - when you have Lyme you blame all conditions there on out on exactly that - which may or may not be the case. I am sorry you are experiencing this, but you will get better. This will not be forever.

I have many of the same symptoms. Pee like an 80 year old man lol. The pain and urges mirror mine, triggered by sexual activity. I would urge you to at least investigate this. But above all know that you aren't alone in this fight.

I found one post from someone online from back in 2012 that is my story EXACTLY. Every detail from beginning to end with exact symptoms. I'll share here below:



Hello I'm male age 30

I suffered some abnormal pains 1 month ago that started a whole series of symptoms.First of all, i did have some sex . Had no pain.

Then 20 minutes after, this happened:
The pains were when i went to pee in the restroom and i felt electircal shock-like pains(2 of them) in the penis male area. After that, i have all these symptoms
that are still present today and I've been anxious and panicking.

1. Tingling/Burning around scrotum and penis
2. Urination problems
-Inability to feel urge. Don't feel strong urge when i wake up in morning. Dont feel strong urge/defined urge almost none at all during day. It's mainly very vague tiny sensation that tells me maybe i have pee in my system but it's almost nothing
-difficulty starting to pee when i do go to the restroom
-urinary stream breaks up alot and i can't seem to have control in making stronger. it dies out. then i get it again.. and dies out.. etc. then
-weak urinary stream but not too much. actually lately it starts strong
-feel like i want to do even after i did.
-even when out of restroom, feel small urge like i have pee in me. although i really dont.
-When I go have a bowel syndrome i would usually pee strong . But after the injury, now it keeps breaking up and after i do one stream, it dies out and i have to wait for more streams to come. so it takes a while to completely feel empty

3. some sharp pains in the penis
4. At times when i sit and i pass gas, i get pain in the penis glans.
5. at times when i move or like bend my torso or my penis gets squeezed by the pants/underwear i get a pain in the penis.

***
It's been 1 month with these symptoms, and although the urination has become alittle better in terms of stream strength..and also the sharp pains have decreased..i still have them many times, and the urination abnormal still. I have no pain with urination , and no pain with ejaculation(which i tried just to test).

I've gone to a urologist who did see i have a tender prostate and thus is treating me for Prostatitis.. But i dont think that explains why i have pains
upon being touched/bumped in the penis or the fact that i have some very annoying tingling/buringin in the scrotum/penis. Kind of like pins/needles.
not exactly like pins/needles but something like it.

The prostatitis symptoms I read in the web , always say that people have a frequeent strong urge to urinate. And mine is not that, mine is that I have a veeery verrrry weak or manytimes nonexistent urge to pee.

Don't my symptoms sound more like PN, than prostatitis? An article i read in the web said that some people dianogsed with Prostatitis can actually have PN instead. In my case the initial pain i had in the penis cause Electrical shock-like pains so I been thiking this may be some nerve damage that somehow has affected sensation in the scrotum and sensation in the bladder/urinary system in terms of control and urge to urinate.

I dont reall y have pains when i sit. And my pain doesn't increase when i sit.

I will add my prostate was fine on inspection and PSA level was excellent. The symptoms regarding pelvic floor dysfunction vary widely.

the other option to consider is that there is a non-lyme urinary tract infection at work

chronic UTI are linked with the type of symptoms in the urinary tract and reproductive organs you are describing.
chronic UTI have also recently been added to the list of infections known to be caused by biofilm forming bacteria ( in the conventional western scientific literature - no woo-woo alternative medicine circles).

this is significant as bio forming infections are often very hard to culture or test for - eg biofilm infections of the heart valves are often seronegative and culture negative.

so a person may present with symptoms - be tested by their PCP and be told "the test is clear - there is no infection" - when in fact the test is just not able to detect infections caused by biofilm colonies - and PCP's are simply 20-30years behind the leading edge of the science when it comes to chronic biofilm forming infections ( all chronic infections )

it could also be that the systemic symptoms of lyme - like other numbness / nerve issues are caused by lyme - and the UTI type symptoms are caused by a separate opportunistic infection in the urinary tract - and the common factor is simply that the immune system is down and allowing multiple pathogens to prosper.
so it can be important not to get too entrenched in an either or mentality.

my partner had chronic UTI symptoms, and then a kidney infection - during the first year or two of lyme - for exactly the above reasons.

yep - symmetrical symptoms often indicate a CNS based neuropathy issue

however - as i said - that doesn't mean all your symptoms are caused by a CNS issue - there may be a peripheral infection element also

lyme is complex - not an either or situation - often a "this AND that, and also some of the other" - type situation

My 16 year old son has Lyme, and when he was six years old, he stopped being able to pee unless I set him down in a warm bathtub full of water. Several things led up to it. First, he flared from his first Lyme LDI dose. Although the subsequent doses of the LDI were adjusted so that they became anti-inflammatory at a weaker dose, it took a while for his nerve injury to be repaired, whatever happened. He didn't immediately lose his ability to urinate. It happened after sitting in the car for a long time while my husband and I drove past houses we were thinking of looking at to potentially buy. I think my son needed to urinate while he was sitting there. I kept on saying we should give him a break. My husband kept on replying that he was not whining or crying yet, so he kept on driving around without giving him a break.

When we got home, I knew our son needed to pee, but he couldn't. It took him several months of LDI treatment plus MB12 shots every 2 days (prescribed by a compounding pharmacy at a very high dose, 5,000 mcg per dose for a tiny little guy who didn't weigh much more than 50 lbs. at the time).

At the present time he is weaned off LDI, and Samento and Banderol have brought gains beyond the LDI, but it has been gradual with fluctuations. The herbs are not only anti-microbial but also strongly anti-inflammatory. Once the herxing is over they are nothing but anti-inflammatory, and I find nothing is better for the facial nerve palsy than the Banderol, but he only takes 4 drops that he worked up to extremely gradually.

Whenever his body is in an anti-inflammatory state I don't try to kill anything with anti-microbials of any kind. When symptoms return I do a tiny dose increase. Mild and transient herxing follows. Then he goes back to an anti-inflammatory state. Over time the herxing has become almost non-existent upon another dose increase.

The urination symptoms have been gone for years, but the facial nerve palsy still readily comes back upon attempting to wean off Banderol. Pretty quickly he feels numbness and pain on the left side of his face.

Although he has been able to pee for years, he used to seem to have a need to have a very full bladder before he would feel the urge to pee. I used to remind him to go pee and sort of get him into the habit of being on a pee schedule. I haven't had to do that in a long time.

He doesn't tell me what he feels, though, unless I ask him about it. I never thought about neuropathic pain in his uro-genital area. I notice he takes a very long time to pee, and he stands there and waits until he has another little stream, and then another. My husband and I can hear it when we're in the kitchen or the dining room and he's in the hallway bathroom. We're kind of used to it and sometimes chuckle about it. Now I wonder what's really going on. I need to ask him about it. It will be tricky to get him to tell me about it openly.

I suspect his medical treatments and tests have probably been neglected since he was regarded as being already "damaged goods" because he has an autism diagnosis. Now I wonder if the medical community has ever yet to this day done its due diligence with his medical care. Or whether I've advocated strongly enough. It's been challenge enough, even with Lyme doctors, to get them to believe he really has Lyme. They seem to keep having a tendency to return to doubts about it.

The doctor who started his LDI treatment ended up telling me that he thought something had been wrong with him from birth, either from childbirth injury, or from a genetic condition. He pulled the rug out from under us, and I had to scramble to find another LDI practitioner who would take him on rapidly.

It's been difficult over the years to get every type of professional to take seriously the symptoms I report. They tend not to listen to me. Because of ABA (Applied Behavioral Analysis) influence, people used to get right in my son's face to force eye contact on him close up. It turned out later that he couldn't easily make eye contact close up but only at a distance, because of issues with left-right eye convergence. After completing vision therapy he easily and readily makes close up eye contact and all without ABA behavior modification being forced upon him.

Because so many uncomfortable things have been forced on him for so long, he tends to think that whatever negative thing he is feeling, he can't express it. It's bad and abnormal. So he keeps it all to himself. It's like pulling teeth to get him to tell me the truth about what he feels if it's something negative.

When he had a headache from Omicron infection, at first when I asked him, he yelled, "No!" He only told me that he had a headache after I volunteered that myself and my husband also had headaches. After saying, "Yes," he immediately followed up with the question, "Am I in trouble?"

I think I need to (tactfully and delicately) try to figure this out now. Doctors are always so lackadaisical about whatever symptoms I report to them, even the ones who help the most.

Yes, he did lose that urge to urinate. And even after it came back, it seemed like he needed to have a very full bladder before he would feel the urge to go pee. I wish I could give you more information. I have more questions than answers. I've found that MB12 shots have been crucial for my son's Neuro Lyme. They helped not only with facial nerve palsy but also with very slow gut motility and with the urge to urinate, as well as helping with hypotonia and dysarthria. They helped faster than anything else.

LDI helped but the core dose didn't remain stable and one time it flared him badly after he had been weaned off MB12 shots. It took a while to recover from the nerve damaged caused by that flare that he had while off the MB12.

The herbs take a lot of time. If you have Lyme they will herx you before you feel the anti-inflammatory effect. If you try Banderol or any other Cowden herbs keep in mind that in one study people did better at low doses than at high doses. The immune modulating plants in the animal studies are anti-inflammatory at a low dose but pro-inflammatory at a hight dose.

Thank you. When you mention his damaged nerve what nerve exactly are you referring to?