First try at Active Protocol and have questions.

[JasonUT]

@JasonUT Did any of your Neuros tell you to avoid Mg with the LEMS autoantibody b/c Mg is considered a calcium channel blocker?

I did not know this. This is fascinating to me! It is my understanding that VGCC auto-antibodies are actually blocking the Calcium Channel. So in theory it seems any form of Calcium Channel blocker, Mg or Rx, would make LEMS condition even worse by blocking more Calcium Channels.

Maybe I don't have LEMS! I started supplementing with Mg Glycinate for the last 1.5 weeks and the initial response seems extremely positive. It's incredibly calming and it has helped calm my heart a bit plus I feel like I have more energy. If I truly had LEMS, would Mg cause more muscle weakness? I will continue the Mg trial very carefully and cautiously.

I started Mg Glycinate for several reasons:

1. Helps with PVC's. I have a history of PVC's and they started up again.
2. Mg is a natural calcium channel blocker and GABA enhancer. Help shift from Glutamate dominate state to GABA dominate state.
3. Mg helps with anxiety, depression, panic attacks, and insomnia.
4. I have a history of B1 deficiency and Mg is supposed to work in tandem with B1 replenishment.
5. I have three cousins with similar health issues as me and they all swear by Mg Glycinate.

Hmmm... I don't know what to think now. This is so very confusing. @Gingergrrl I am so glad you pointed this out. This really has me thinking...

Respiratory failure in lambert-eaton myasthenic syndrome precipitated by calcium-channel blockers: report of a case and literature review.

Exacerbation of Lambert-Eaton myasthenic syndrome caused by an L-type Ca2+ channel antagonist.

 

[Gingergrrl]

I did not know this. This is fascinating to me! It is my understanding that VGCC auto-antibodies are actually blocking the Calcium Channel. So in theory it seems any form of Calcium Channel blocker, Mg or Rx, would make LEMS condition even worse by blocking more Calcium Channels.

What did you mean in your quote by"Rx"? Did that mean "other prescription meds" (because "Rx" is often an abbreviation for prescriptions in the US) or did you mean Rituximab? Are you considering Rituximab to be a Calcium Channel blocker and if so, why? If it is, it brought my illness to remission (vs. magnesium, even in the form of an Epsom Salt foot bath, has given me respiratory depression). Another med which was incredibly helpful for my MCAS and never had any side effects for me (but some consider it to have components of a CCB but others do not) is Ketotefin. Weird.

Also, of the three Neuros that I saw in 2016, two of them told me not to take Mg (b/c it is a calcium channel blocker) but one of them told me that Mg was absolutely 100% fine for me to take. So there definitely is NOT any consensus on this. I belong to two groups on FB (one for people with the N-type VCGG autoantibody but who have a huge variety of diagnoses and one for people with LEMS) and even in there, there are many people who have no problem whatsoever with Mg... for whatever it's worth

Thx for your PM and I have not read it yet. I got very behind on PM's this week b/c my dad just had surgery and am trying to keep up with the main board but am missing a lot. I will definitely reply though... I am just slow

Maybe I don't have LEMS! I started supplementing with Mg Glycinate for the last 1.5 weeks and the initial response seems extremely positive. It's incredibly calming and it has helped calm my heart a bit plus I feel like I have more energy. If I truly had LEMS, would Mg cause more muscle weakness? I will continue the Mg trial very carefully and cautiously.

From my past experience talking to both Neuros and LEMS patients, there is no consensus on this and many are absolutely fine with Mg. If you told me, however, that you were taking a pure CCB like Diltiazem on a daily basis with no side effects, then I would question if you had LEMS. But I continue to question everything (about my own case) and I don't know if any of these issues can ever be truly solved? The way my illness started in 2013 was drastically different than what it was in 2015 to what it was in 2018 and now.

You also test positive on the Potassium Channel autoantibody (which I never have) and I don't know how this factors into your case?

I started Mg Glycinate for several reasons:

I think those are all valid reasons and I actually would take more Mg myself if I could tolerate it better. I think it's a great thing to take for the vast majority of people on earth (just not me at present ). I also have the auto-antibody "anti GAD65" which blocks the enzyme which allows glutamine to convert into GABA. Do you test positive for that one?

Hmmm... I don't know what to think now. This is so very confusing. @Gingergrrl I am so glad you pointed this out. This really has me thinking...

I agree this is all very confusing and one of the most frustrating things for me is that I am unable to figure it all out no matter how hard I try. I think from talking to you (and from the articles that you found so quickly below!) that you have a much stronger science background which I lack. I know there is a skill to finding good articles on any topic on-line but I have never succeeded in this

I need to do a colonoscopy soon b/c my mom passed away from colon cancer last year and am mentioning this b/c many of the prep drinks are Mg based which is not safe for me (among many other issues such as being allergic to food dyes also found in most prep drinks). I have a consult on 5/13 and am praying that I can speak to the GI doc and anesthesiologist in detail about my unique situation.

Respiratory failure in lambert-eaton myasthenic syndrome precipitated by calcium-channel blockers: report of a case and literature review.

This is an interesting article/abstract and it sounds like the woman was given a high dose of both Diltiazem and Verapamil at the same time... which I think might have killed me!

Exacerbation of Lambert-Eaton myasthenic syndrome caused by an L-type Ca2+ channel antagonist.

This article/abstract was also very interesting and I have two questions that I am hoping you might know (or have an opinion on).

1) Is there a commercial lab test (such as Mayo) for the L-type CA+ Channel Autoantibodies? It seems that there is not a commercial lab that tests for this (outside of research) so I don't know how any average patient would ever know if they are positive for the L-type Ab?

Which actually brings me to my next question which is...

2) Do you know if the anesthesia, Propofol, is considered a CCB? I have read on-line that it blocks the L-type CA+ Channel but am not sure if this means that I should avoid in (in a colonoscopy for example) or if it is safe for me?

I was heading down the path toward respiratory failure in 2015 & 2016 until the IVIG & Rituximab put this issue into 100% remission. So I will not undo it by having Propofol (and am certain that I can have other meds for the colonoscopy) but I'd LOVE to know in general if this is one that I should avoid? In the FB groups I mentioned, there were people who do absolutely fine w/Propofol (which was great to hear) but again, each person is unique so I don't know if it would pertain to me (and many of them did not have profound muscle weakness in their lungs & diaphragm like me). Ugh... this is all so frustrating

Also one of the articles that you linked (I think the second one) described LEMS as only having the P/Q type autoantibody (with no mention of the N-type) which is one of the reasons that my case seems to be atypical.

 

[JasonUT]

What did you mean in your quote by"Rx"?

Rx = Prescription med

...(vs. magnesium, even in the form of an Epsom Salt foot bath, has given me respiratory depression).

I love Mg Sulfate (Epsom Salt) Bath. Very relaxing, temporary, but relaxing. I also started using Mg Chloride Oil Spray. There is a theory that Mg Chloride Oil Spray will sting if you're deficient in Mg, but with time the stinging feeling disappears as your Mg stores replenish. This happened to me. The first week I would have redness on my chest with stinging, but by the second week, the Mg Oil Spray causes no sensation at all and no redness.

You also test positive on the Potassium Channel autoantibody (which I never have) and I don't know how this factors into your case?

Yeah, I don't know what this means either.

I also have the auto-antibody "anti GAD65" which blocks the enzyme which allows glutamine to convert into GABA. Do you test positive for that one?

I don't, but I do have some gene variants in GAD1 and COMT per 23andme data analysis.

"The GAD enzyme converts glutamate to GABA. When someone has high glutamate and a lot of
variants in GAD, it creates conditions that may have high glutamate and low GABA that could
increase stress and conditions related to high glutamate. It has been observed, that Homozygous
variants in GAD have more impact that many Heterozygous. SER-GAB Assist and GABA Assist may
be helpful if there is low GABA."

"COMT is involved in breaking down excitatory neurotransmitters and detox reactions. Click on the
enzyme rating for more information."

1) Is there a commercial lab test (such as Mayo) for the L-type CA+ Channel Autoantibodies? It seems that there is not a commercial lab that tests for this (outside of research) so I don't know how any average patient would ever know if they are positive for the L-type Ab?

Which actually brings me to my next question which is...

2) Do you know if the anesthesia, Propofol, is considered a CCB? I have read on-line that it blocks the L-type CA+ Channel but am not sure if this means that I should avoid in (in a colonoscopy for example) or if it is safe for me?

I do not have thoughts or knowledge about these questions.

 

[Gingergrrl]

Rx = Prescription med

Thanks and I thought you meant Rx as "prescription" but then thought you might have meant Rituximab.

I don't, but I do have some gene variants in GAD1 and COMT per 23andme data analysis.

I did 23andMe in 2014 but wasn't skilled enough to make any sense out of it. But I did learn about the GAD65 autoantibody which I test positive for on Mayo Panels (PAVAL and DYS1). It an correlate with diabetes (which I do not have), with Stiff Person Syndrome (SPS) which I had some symptoms of on a minor level but definitely not enough for the diagnosis and then with IVIG those symptoms 100% disappeared. GAD65 can also correlate with Dysautonomia which was one of the biggest parts of my illness prior to treatment.

I do not have thoughts or knowledge about these questions.

No worries and I hope to find answers to this some day (if there is a commercial test for the L-type CA+ Ab and if Propofol is considered a calcium channel blocker).

 

[JasonUT]

A very old post... #45: Low Catalase and Glutathione causing gray hair.

Oddly, my gray/white patches in my beard seemed to be fading ever so slightly prior to this recent crash. Now, 2 months into the crash the patches are increasing.

Due to the crash, I started Mg Glycinate at a much higher dose then I have ever done in the past, 100 mg 4x per day. This was due to this most recent severe crash. So this should be an interesting experiment. Will the Mg Glycinate cause the patches to fade? If this happens, I will be completely shocked and beside myself. This seems far too outrageous to be possible.

I also just started drinking Tulsi Tea due to it's many health benefits including increasing Catalase - Link1, Link2.

Some food for thought:

1. Effects of source and level of magnesium on catalase activity and its gene expression in livers of broiler chickens.
2. Magnesium deficiency enhances hydrogen peroxide production and oxidative damage in chick embryo hepatocyte in vitro.
3. Top 24 Ways To Delay Graying Hair - SelfHack

 

[JasonUT]

Genetics: I have an appointment with Baylor Genetics. I don't know what to expect or if anything will come from it.

1. According to GARD, POTS may have a genetic link to NOS3, ADRB2, and SLC6A2 polymorphisms.
2. NET gene article on POTSUK.org
3. NET silencing by let-7i in postural tachycardia syndrome - Link
4. Cleveland Clinic QA - Second Question discusses genetics - Link
5. Thiamine Genetics - Link (I don't appear to have any of the defects listed although I struggle with B1 deficiency per SpectraCell Micronutrient testing)

 

[JasonUT]

Good post on Mg: #17

 

[JasonUT]

Vagus Nerve Stimulation:

1. My doctor believe strongly that the "mind-body" relationship is a factor in POTS.
2. As a result, I have been researching a variety of ways to do VNS.
3. 30 ways to stimulate the Vagus Nerve - Link
4. I am very interested in using a TENS unit for VNS via the ear. However, I am having trouble finding info on what to buy and how to do this.
5. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity - Link
6. Treating Depression with Transcutaneous Auricular Vagus Nerve Stimulation: State of the Art and Future Perspectives - Link
7. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity - Link
   

In another brain imaging study (84), the authors compared the fMRI signal changes evoked by 25 Hz stimulation at the inner tragus, inferoposterior wall of the ear canal, cymba concha, and earlobe (control location without VN distribution). The results showed that stimulation at the inner tragus and cymba concha produced significantly greater activation in the NTS and LC compared with the control location (earlobe). Further ROI analysis showed that only stimulating the cymba concha produced a significantly stronger activation in both the NTS and LC than stimulating the control location.

Is there anyone out there that can point me to some helpful guides or info?

At this point, I am leaning towards a TENS 7000 unit, but I need a lot of help on what ear clips to buy and how to properly use the ear clips. Any help would be greatly appreciated. Thanks.

Maybe use clips similar to this study? - Link

TENS Settings patient testing summarized:

1. 200 μs, 30 Hz - Link
2. 25 hz, 250 pulse width - Link
3. 5 hz, 250 pluse width and the power setting of 1, on "Normal" mode - Link
4. 4 hz modulated, 250 pulse width setting - Link
5. 25Hz/250 pulse width. Power was set to between 1 and 2 - Link
6. the most common settings seem to be 20-30Hz and 200-250 microseconds - Link
7. pulse rate = 20Hz, pulse width = 100 microseconds, continuous mode - Link
8. 20 HZ 100 ms and 1 second on and 1 second off for 15 min in general - Link

 

[JasonUT]

Finally found a picture of the Vagus Nerve in the ear. Source

Figure 1. The distribution of the auricular branch of the vagus nerve to the external ear (shaded area, extrapolated from Peuker and Filler(11)). C, concha; T, tragus; CyC, cymba concha.

 

[sregan]

Hi @JasonUT : well done for giving it a go.

• copper: don't let it drop too low or go too high. We need only 2mg per week, but zinc every day. In contrast, Freddd takes huge amounts.

You can absorb quite a bit of stuff through your skin: zinc, magnesium and even B6. We apply 0.7 ml of a metagenics zinc drink on the skin in the mornings, footbath in the evenings of a handful of epsom salt, a pinch of borax and a few drops each of eucalyptus and tea tree oil.

I've been trying to find balance with copper. I tend to feel really good when I'm there. I remember @Freddd talking about taking up to 20mg. I can't even imagine going that high. I've got 3mg chelated and trying to balance that with my Zinc is hard enough.

 

[renski]

Additional thoughts from OAT results:
1. Uracil Acid is elevated, but I am currently supplementing with 12 mg of L-methylfolate. How is this possible? Methylation pathway panel measures 7 forms of folate.

I know this is old but - Uracil is a marker of mitochondria DNA damage

 

[renski]

How would I know? I am currently supplementing with 25 mcg from multi-vitamin.

@JasonUT

hair analysis for molybdenum levels..

 

[JasonUT]

http://cfstreatment.blogspot.com/p/supplements.html?m=1

Supplements list

 

[chrism]

This had been fascinating and frightening to read. I really hope you are out living life and got this sorted @JasonUT. I've come into poor health and this has inspired me to sort it out.

I'll be visiting with a Dietitian soon. It is wild to see how many professionals you've had to work with.

 

[TinaT]

Appointment with nutritionist seemed to go well. We are waiting on Methylation Pathway Panel. He thinks raising Glutathione is key to getting me healthy. The struggle is how to do it. He also agreed that it is plausible that I could be stuck in perpetual refeeding syndrome due to low B-Vitamin status.

He liked my current total B-vitamin dosing based on my specific SpectraCell and OAT results:
B1 - 245 mg
B2 - 100 mg
B3 - 150 mg
B5 - 50 mg
B6 - 60 mg
B9 - 15.6 mg
aB12 - 3 mg
mB12 - 2.2 mg

He recommended two changes:
1. Increase Zinc to copper ratio closer to 15:1 by increasing daily zinc dosage. He also wants me to continue using the Zinc-L-Carnosine form, because of it's benefits to the GI lining. He has seen good results with Nature's Lining, Doctor's Best, and Source Naturals brands which come in 8 mg dosing per pill. Therefore, I need to get to about 52.5 mg of total zinc since I am currently taking 3.5 mg of copper. Multi contains 15 mg of Zinc; therefore, 4 pills of Zinc-L-Carnosine will get me to 47 mg per day. Ratio = 13.4 to 1. I should not exceed 15 to 1 ratio, because it could lead to Zinc toxicity.

2. Experiment with NAC to help lift Glutathione. He said start low and work up. Final dosage may be between 500 mg to 3000 mg per day. Kind of vague, but he did acknowledge that adverse side effects or detox might happen if/when glutathione level starts to improve. I am a bit apprehensive based on other people's experience on this forum. I may wait for my Methylation Pathway Panel results before venturing down this path.

N-Acetyl Cysteine (NAC), specifically cysteine, is a precursor to glutathione [Source]. Cysteine is converted to glutathione with Glutamate + 2 ATP + Glycine [Source]. Interestingly my SpectraCell cysteine level is very good. Does this mean my deficiency is in Glutamate, Glycine, or ATP? This is getting very complicated.

These articles have some info Zinc, Copper, NAC, and Glutathione.
Article 1
Article 2
Article 3

Open Items to review:
1. NAC
2. CoQ10
3. Acetyl-L-Carnitine
4. Revisit L-Carnitine Fumarate
5. Magnesium orotate
6. Lithium orotate

Hi. I'm brand new and would greatly appreciate feedback.

Most important question: would you mind sharing the name of your nutritionist (I'm hoping he / she has virtual appts).

Even though I'm new here, unfortunately I'm not new to medical problems and trying TONS of different supplements over the last 3 years. Formerly very healthy. Cascade of different problems, which I'm just starting to believe might be caused by B12 (I'm a plant based eater -- very little B12 for the last year and a half bc I couldn't tolerate it and thought it would be temporary.)

Anyway, based on my history, I'm pretty sure that there is no way I can tolerate all of this stuff. And I desperately need B12. Besides, like where you list symptoms of thiame deficiency, for example, those could also be B12 deficiency, or any number of other vitamin or mineral deficiencies. That's kinda the same with all of these posts, from everyone. I mean we can't accurately monitor ourselves based on symptoms, for that reason. And even if we were willing to pay to get tested daily, we wouldn't get the results daily. At least with minerals, wouldn't this be a minute by minute or at least hour by hour changing situation?

I'm just way too nervous to screw around with things that I know might cause other reactions, and there is no way that I can learn all possible variables. I have to give serious credit -- I've spent countless hours reading many websites for various conditions, including lots and lots of actual studies, books, etc. And this website, BY FAR, exceeds everything I've ever read in complexity. Usually I can keep up.. But not this time. There is no way, even if I were thinking of trying to monitor symptoms then supplement, that I could possibly understand which symptoms should lead to which supplements.

Short version: I'm massively confused, scared, and totally unsure about what basic steps I can and should take.

I just received a methyl B12 injection. Could anyone suggest the *bare minimum* other supplements that I should take or try as cofactors? I can't take a handful of supplements. I know that I will not react well.

How dangerous would it be to just try eating normally? My diet is still plant based and includes a lot of nutrients already, besides B12. (I have no interest in not eating vegetables or fruits even as a trial of-- way too many other bad health effects would result.)

Even methylfolate makes me nervous. I guess that's a basic one. But I have no idea what that might do. And potassium. Can't I just eat a banana?

My biggest fear is total and extended duration insomnia (and I guess dying from lack of potassium and / or not reversing or at least halting the negative effects of B12 deficiency bc somehow my body can't use this form).

Also, as far as food, my diet is extremely restricted atm bc I can't tolerate any acidic foods. I have to take pepsid but only at night, several hours after dinner. So I'm hoping that I'm absorbing most of what I'm eating.

I would appreciate feedback from anyone who might help!!