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Posted 3/23/2021 11:35 AM (GMT 0)
I feel like I am plugged into an electrical socket ALL the time. Buzzing, electrical sensations. I know normal lyme people get buzzing, but this is not that. I feel like I am buzzing ALL the time.

Looking through my old results from 2019. My dr ran the Mayo Clinic Encephalitis Panel. My gAChR antibody was low positive. High positive indicates AAG, a type of autonomic neuropathy. Low positive indicates neurological autoimmunity of any kind. It often can be accompanied by an NMDA receptor antibody.

WELL....i just noticed that all of my other antibodies on that test said "negative", accept for the nmda receptor, which had a numerical value just below the cutoff. It must be active now. The ion-channels are responsible for firing the neurons and conducting electrical signals. This explains EVERYTHING. No one said anything to me.

How long on this board have I been talking about ion channels and glutamate and hyperexcitability and ion-channel antagonists. I knew it in my plums that was my issue.

It says online that these anti-neuronal ion-channel antibodies dont happen on their own. They are ALWAYS triggered by something. In 30% of the cases its a cancer, which there's no indication I have as my writing this, knock on wood. Other 70% is an infection. Horowitz mentions these antibodies in multiple places in his book. Lyme causes this. But it was probably that infection I got in costa rica.

F-me. Not sure how to stop this. But it explains the full body electricity I continue to complain about. It feels good to finally know, unfortunately it's not a diagnosis you want. I have full on neurological disease triggered by an infection...

Post Edited (dcd2103) : 3/24/2021 5:00:10 AM (GMT-6)

Posted 3/23/2021 1:14 PM (GMT 0)
I guess there's less hope of getting better by shutting down the antibody production?

At least you have a better idea about the cause.. maybe now you look more towards "immune rejuvenation".

Funny how you could "feel it in your plums":

https://youtube.com/watch?v=tvcniacwg0q
Posted 3/23/2021 2:08 PM (GMT 0)
buwhaha, thats what i was picturing when i said that
Posted 3/23/2021 3:12 PM (GMT 0)
So DCD, any possible treatment options for what this is? What neurological condition do you think this actually caused?
Posted 3/23/2021 3:32 PM (GMT 0)
Hey garion! Basically, nmda ion channel issue is a form of ecephalitis. This explains the seizure-like migraines that would last for 4-5 days. The full body buzzing. The electrical sensations. The increasing numbness. It's basically a brain disease.

My treatment plan is as such. 1.) I'm going to have to stay on Mexilitine and keep getting ketamine infusions. It appears that since my ion-channels are being attacked, the mexilitine is not just "masking" the pain, it is literally stopping the ion-channel damage. 2.) Going to try to eliminate the blastocystis hominis, which is the infection that orginally caused this. Starting w/ blackwalnut and wormwood. Going to combine that w/ rifaxamin, which is a weak anti-protozal which should help the SIBO as well. If that fails, will try Tindimax. 3.) Going to have to go back on IVIG, and probably a higher dose. 4.) Going to Spero Clinic in august. This is an autonomic rehabilitation program. These guys specialize in neurological disordres, particularly CRPS. Which is an ion-channel disease in itself. I asked them about this antibody and does it matter, and they said no. Everyone has an antibody or some inflammation that their dr says is incurable, and it doesnt matter. People heal. We will see. 5.) If all of this fails, the next approach is typically immunosuppression. Cellcept and/or Rituxan are first line treatments once IVIG fails. I have zero interest in being immunocompromised for the rest of my life. I will skip right to the chemotherapy and roll the dice. I have researched this ad nauseum, it works much better than Rituxan.

Post Edited (dcd2103) : 3/23/2021 6:04:20 PM (GMT-6)

Posted 3/23/2021 4:02 PM (GMT 0)
dcd- youve had short term relief from various different ideas the last year or so. Any idea why they were all short term? How is it that they all helped but only for a short time - whats the relation they all have?

Wonder what happens if you repeat this but all at one time?

This depth is beyond what ive ever looked into so im wondering.
Posted 3/23/2021 4:12 PM (GMT 0)
Hey astro...so basically I got some immediate relief from ketosis. My burning stopped. Electrical sensations and buzzing got a bit better at first. I saw this all as a sign that i was healing and on the right track. As time has gone on, however, and as I'm less and less able to maintain a "perfect" lifestyle day-in and day-out, the buzzing/electricity is back. The burning is still gone, as long as I eat well, and the buzzing is less, but its still there. This really is the one thing I do that helps. I think the worse my diet, the more triggers I have. Also, the SIBO clearly aggravates the autoimmunity. Lower overgrowth = less autoimmune activity.

I get relief from ketamine and mexiltine. They are both ion-channel antagonists. So they really do block the ion channels from firing glutamate, and damaging the nerves, by raising the voltage necessary for an action potential. This will only be temporary, however, as it does not stop the antibody from aggravating the ion channel in the first place. So it's neuroprotective, but not curative, is the take away. ARA-290 is a peptide i got some relief from, it seemed to lower localized inflammation, but i had to stop as I think it raised my kidney numbers. Meditation, deep breathing, mouth taping, all of these things helped to lower autonomic stress which helped.

There were periods where I felt like this was it, I had turned a corner and was on the road to healing, and i got all excited and posted about it, only to be dragged right back down, as often happens in chronic illness. And then I felt stupid for having posted about how I was healing and leading people on, only to be stumble again. Seems like this encephalitis is the reason, its a serious thing.

Post Edited (dcd2103) : 3/23/2021 12:28:37 PM (GMT-6)

Posted 3/24/2021 10:11 AM (GMT 0)
It was a good thing for me you promoted the Keto diet Dcd, Made me change to it also and I feel it has a lot of benefits..
smile
Posted 3/24/2021 11:55 AM (GMT 0)
Hey Moose and Sandy, glad I can help in some small way!! smile
Posted 3/26/2021 11:01 PM (GMT 0)
Update: So I may have made an assumption and jumped the gun w/ that antibody.

I have spoken to an autoimmune neurologist and my pain med dr. The autoimmune neuro cant confirm my theory about my body attacking the voltage-gated ion channels. He said that its very well possible, but the titers arent high enough to confirm it. Given the test was done 2y ago, we'd have to repeat it, and only the Mayo Clinic runs it. He did feel, however, that it confirmed a diagnosis of autoimmune neuropathy, regardless if its attacking the ion-channels or the myelin sheath. Regardless of which antibody it is, it wont change treatment, so I guess it doesn't matter.

He did say, however, that he had been thinking about me and some of the things I had been saying, and that he is changing his mind about Small Fiber Neuropathy based on some new research. 6m ago he believed it was strictly an autoimmune condition first and last, but he's now beginning to believe it's almost a form of PTSD. He thinks that it involves "central sensitization" and dysautonomia as well as immune dysfunction. Basically, not only does the immune system attack the nerves, but the autonomic nervous system begins to change the brain such that the pain becomes ingrained. A sympathetic pain feedback loop begins, such that you may get the immune system under control, but the pain will still continue. He feels that this is what is causing my "buzzing".

Similarly, my pain management dr had been pounding the table about central sensitization as well. He too feels it's sympathetic. This aligns with my thinking. So everyone is in agreement.

I do not know how to turn my autonomic nervous system off. He recommended ketamine, which I'm already doing. He also recommended a "stellate ganglion block". I had posted about this before as an option. I'm going to try it. Basically it's a nerve block used on the sympathetic nerves for PTSD, to shut off the ANS w/ a very high success ratio. If this fails, I'm going to Spero Clinic.

I will let everyone know how I fare. This is wild stuff. My body vibrates and I get electrical shocks, and it's likely the ANS which is doing it. I would not believe the body could do this if I were not living it.
Posted 3/27/2021 2:42 AM (GMT 0)
Thanks for all that info dcd2103.

“He also recommended a "stellate ganglion block". I had posted about this before as an option. I'm going to try it. Basically it's a nerve block used on the sympathetic nerves for PTSD, to shut off the ANS w/ a very high success ratio”

Is the nerve block injections?
Is there any risks to the procedure?
Posted 3/27/2021 3:52 PM (GMT 0)
you have my full respect and admiration for keeping on trucking through the ups and downs and wrong turns etc Dcd -

if you keep trying new things there is always hope for improvement

hope the treatments work out well

more power to you !!
Posted 4/19/2021 5:14 AM (GMT 0)
Dcd2103, How is your buzzing now? I also have this central sensitization, including light and sound sensitivity and buzzing.
Did they stay away after the infusions?
Thanks for your help.
Posted 4/19/2021 5:48 AM (GMT 0)
Hi Nitro fusion2 - welcome to the forum.

Feel free to start your own thread and introduce yourself - tell us your lyme story - if you want
Posted 4/19/2021 11:05 AM (GMT 0)

Nitro_fusion2 said...
Dcd2103, How is your buzzing now? I also have this central sensitization, including light and sound sensitivity and buzzing.
Did they stay away after the infusions?
Thanks for your help.

Hey Nitro. My central sensitization is still there. The buzzing is pretty awful. More I learn I begin to realize it's an autonomic "learned" response. I put it in the same category as POTS. It's gotten a bit better, especially since I finally know what it is, but it's still there for sure.

I met a girl in the small fiber neuropathy group on FB who had bad central sensitization, neuropathy and CRPS. Her buzzing was very bad. She did Calmare therapy and said it brought her pain and buzzing from a 9 down to a 2, and its been 2y and its still way better. After doing some research, there are great reviews and success stories. So I'm starting it 2 weeks from today.

https://www.youtube.com/watch?v=in4bpt3io9i

Basically they hook you up to a machine that outputs very specific signals that scramble your specific pain response. You have to do it for 12 days in a row and by the end hopefully the nerves are so confused they stop hurting and buzzing. There are only 6 centers that do it in the US. It's relatively affordable at $3500.

Other thing I'm doing as I've mentioned is goin to the Spero Clinic in august. They specialize in dysautonomia and work some miracles. Not cheap though.

Finally, ketamine infusions really can help. I've done 5. It's been enough to attenuate the pain and buzzing for up to 2 weeks, but I havent done enough to completely arrest the process. Most I've done is 125mg. If all else fails, I will try a big boy dose, 750mg 3 days in a row. See if that can stop it.

As girlie said, welcome to the forum, and fill us in on your lyme story if you feel comfortable! Often can help us lend suggestions if we know what you have and what you've tried.

Post Edited (dcd2103) : 4/19/2021 5:08:40 AM (GMT-6)

Posted 4/19/2021 12:09 PM (GMT 0)
dcd,

I just read through all this and noticed you mentioned electrical shocks. Not sure exactly what you were referring to, but it brought something to mind. If you are referring to static electricity shocks - meaning you frequently get static shocks - this is common in CIRS and is related to an imbalance in ADH/osmolality.

This is what happens. I am quoting this section from here https://www.survivingmold.com/docs/understanding_cirs_editv2a.pdf.

“ Biomarker Testing: Anti-Diuretic Hormone (ADH) and Osmolality
Anti-Diuretic Hormone (ADH), also known as vasopressin, is a hormone made in the hypothalamus that controls the body’s ability to hold on to free water. Osmolality is the concentration of all chemical particles (such as sodium, potassium, and calcium) that are in the fluid part of blood (serum). In Biotoxin illness patients, a lack of regulation of salt and water balance is apparent when ADH is low (or too high) but osmolality is relatively high (or too low). Affected patients will experience frequent urination, dehydration, excessive thirst, and dehydration-related migraine headaches. As the sodium (salt) level in the blood rises because of a lack of free water, the patient’s sweat will also contain more salt. The electrical properties of the increased salt create a battery-like effect that increases static electrical shocks. Lab Results: For ADH normal range is 1.0-13.3 pg/ml; For Osmolality normal range is 278-305 mOsm/kg.”

I am not a science person, but I think I have heard of something called calcium ion channels, and you were talking about ion channels. Anyway, you’re a science guy, so I am sure you can figure out if there’s any connection here.

If you look at the link, it describes all the CIRS lab markers and the step by step treatment protocol to address the abnormalities. Step 6 addresses the ADH/osmolality specifically. I never used that treatment, but I did and probably still have low ADH/normal or low osmolality. I have had water issues for years.

Post Edited (WalkingbyFaith) : 4/19/2021 6:14:13 AM (GMT-6)

Posted 4/20/2021 10:34 AM (GMT 0)
Thank you WBF!!!! This was a great primer! I think what theyre talking about is actual electrical conduction similar to static discharge. I dont necessarily get that, what the sensations i get are more a subjective tingling or zaps inside my feet. It could be related though, since it may affect ion channel conduction. My ADH was low (.5) interestingly, but i did look into diabetes insipidus which is clinically what low ADH causes and it doesnt seem to be me. This is very intersting though and I will ask my neuro about it.

What's also interesting is that my VIP and VEGF are both low. Low readings on both of these seem to cause poor circulation and exercise intolerance, both of which I have. Shoemaker says that these can mean CIRS.
But my c4a is always normal, which normally doesnt happen in CIRS, and I've done the GPL mycotoxin test and it was perfectly clean. It's all very bizarre and a bit of a mystery. I need to get my c4a retested. How high is yours? Have you tried any of the Rx treatments he mentions in the protocol?

Post Edited (dcd2103) : 4/20/2021 4:37:54 AM (GMT-6)

Posted 4/20/2021 12:25 PM (GMT 0)
dcd,

I don’t think most CIRS people have every one of those lab markers abnormal, but they will often have quite a few. I have read where Shoemaker says C4a is very indicative of mold exposure. However, what many don’t realize, is CIRS is not confined to exposure to mold/water damaged buildings. It’s a biotoxin illness. It can also be caused by Lyme, dinoflagellates, blue/green algae, brown recluse spider bites, etc. Biological organisms that produce known toxins. I believe Shoemaker acknowledged babesia produces a toxin. I don’t think anyone has identified a biotoxin produced by bartonella, but as awful as it is, it must produce something.

When it’s not caused by mold/mycotoxins, then it can get tricky trying to determine what infection(s) may be the culprit. The infections have to be treated, as they are what produce the toxins. Treating chronic tick-borne infections is not quick or easy as we all know.

The aspect of CIRS in relation to Lyme/co can potentially really make a difference for those who are caught in that PTLDS category if they have adequately treated all the infections. It’s possible that their symptoms can be the result of recycled toxins and bacterial debris that could be removed by Cholestyramine, and abnormal body dysfunction that could be restored following his protocol.

Girlie posted a video documentary about a Canadian couple once, where the woman had severe Lyme symptoms. Abx helped for a couple weeks and then everything went south again. The doctor decided to try Cholestyramine, and it worked. She got her life back. I don’t remember if they talked much about it in the documentary, but I seem to remember she did have mold exposure somewhere. That may be why the CSM fixed her in the end.

There are many interesting clues that can be uncovered by science minded folks who did deeper into the Shoemaker stuff. He doesn’t know everything, but I do think he’s brilliant. There was a paper put out a few years ago that had some statistics related to different CIRS groups that was interesting. I will see if I can find it. The trouble with the Shoemaker info is it’s not clearly organized anywhere and is difficult to find.
Posted 4/20/2021 12:34 PM (GMT 0)
Thanks WBF. I guess my question, however, is with CIRS isnt C4a normally high? Mine was normal last time i had it checked. I think C4a is one of those ones thats very indicative and probably should be high to consider that diagnosis, as its a very real-time marker for complement activation. Dunno.

Did cholestyramine help you? I may ask for a trial from my neuro. I do wonder if the yeast/candida i have is one of the things that keeps my immune system activated
Posted 4/20/2021 12:46 PM (GMT 0)
I just found this Q&A with Shoemaker regarding C4a. This is what was said.

“Does elevated C4a mean there is ongoing exposure to water-damaged buildings?

C4a production is under control of one of the few (some data says only) enzymes that auto-activate. What that means is that the immune stimulation will persist even if there is no ongoing exposure. This is the mechanism as well for the so called, “sicker quicker,” phenomenon of marked elevation C4a with re-exposure.

Low levels of C4a are a goal but there is a subset of people with MARCoNS that will have suppression of C4a by that organism.

Please make no assumptions ever in CIRS but especially trying to relate C4a levels to exposure.”

There’s other data where he says C4a will rise with re-exposure to a water damaged building.
Posted 4/20/2021 12:48 PM (GMT 0)
Yea that makes sense, so thats kinda what i assumed. C4a is a real-time marker for complement activation and disease activity. I dont have macrons so not being suppressed by that. I will get it rechecked though to be sure its not high now
Posted 4/20/2021 1:07 PM (GMT 0)
I’m couldn’t find the paper I was looking for, but I did find this. Might be of some interest.

Metabolism, molecular hypometabolism and inflammation: Complications of proliferative physiology include metabolic acidosis, pulmonary hypertension, T reg cell deficiency, insulin resistance and neuronal injury
https://www.survivingmold.com/publications/tdm_metabolism_9_24_2020.pdf

EDIT:
Okay, here’s the paper I remember seeing some years back (2017).
“ Inflammation Induced Chronic Fatiguing Illnesses : A steady march towards understanding mechanisms and identifying new biomarkers and therapies.”
https://www.survivingmold.com/publications/lyme_biomarkers_imr_final_10_13_2017.pdf?inf_contact_key=341545b626e6353d735739a40941df0209c74070ac2bf3cfa7869e3cfd4ff832

Post Edited (WalkingbyFaith) : 4/20/2021 7:22:34 AM (GMT-6)

Posted 4/21/2021 3:27 PM (GMT 0)
Though you might enjoy this WBF. Talks about low VEGF in mold and ways to reverse it. Found it very enligthening. My VEGF is 30, so low, and i have the exercsie intolerance. I've had it since i was in my teens tho. Also have low VIP.

My GPL was clean, yet my OAT test showed 3 different markers for aspergillus. Can this be in teh gut or does it hide out in the lungs? How would i treat that?

https://youarethehealer.org/mold-and-toxins/moldy-people/testing-for-mold-illness/vascular-endothelial-growth-factor/

EDIT: I guess these markers dont necessarily mean mold, can be any fugus like candida. Def something in my GI tract, maybe partially to blame for my low WBC and chronic inflammation.

Post Edited (dcd2103) : 4/21/2021 9:57:08 AM (GMT-6)

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