First try at Active Protocol and have questions.

[renski]

@JasonUT

Quicksilver has a good quality PC - https://www.quicksilverscientific.c...olesale/catalog/product/view/id/28/s/pure-pc/

Have you tried using a binder as well, for clearing stuff out of the gut? I'm using Quicksilver Ultrabinder for that.

 

[JasonUT]

SpectraCell Micronutrient and Glutathione Analysis

In post 141 above, I discussed lifting Glutathione by switching me focus to improving glutathione recycling by supporting Glutathione Reductase via B1, B2, and B3.

I started supplementing with 300 mg B1 TTFD and 1000 mg B3, because both were functionally low per SpectraCell testing. The traditional approach of experimenting with various forms and doses of B9 and B12 was not working.

SpectraCell Glutathione Data (Ref Range > 42):
3/28/2017: 47 (Borderline)
6/20/2017: 46 (Borderline)
10/23/2017: 49
4/9/2018: 54

It appears the approach is working. As a result, I am going to try reducing my B1 TTFD to a 150 mg TID sustaining dose. I will leave B3 as is at 500 mg BID.

 

[JasonUT]

Nutritionist Notes 6/4/2018:

1. There is a relationship between B12, B5, and Choline. These were borderline deficient per latest SpectraCell Test.
2. He wants to focus on optimizing acetylcholine production. Completely saturate acetylcholine requirements by increasing Lecithen to 1 Tbsp TID and adding DMAE 250 mg TID.
3. DMAE helps improve Choline to Acetylcholine conversion
4. Saturating acetylcholine should also help betaine. Betaine is found in most digestive enzymes. Therefore, this should help improve digestion which should translate to improved nutrient status.

Link to diagram.

 

[CCC]

This is interesting to us. I might put that next on the list. We have some other things to work through first.

You might be interested to learn that we have gone about increasing acetylcholine via a different theory from a Lyme forum. We use 25mg huperzine every 2 days; acetyl-l-carnitine + ECCG every day (plus loads of other stuff). We're about to start alphaGPC.

(If you have the energy to rad through the whole thing, you'll see it's based on the idea that Lyme toxins increase the breakdown of acetylcholine via acetylcholinesterase. This approach reduced the breakdown.
https://www.healingwell.com/community/default.aspx?f=30&m=3928795
and the continuation at: https://www.healingwell.com/community/default.aspx?f=30&m=3931788)


QUOTE="JasonUT, post: 981439, member: 29117"]Nutritionist Notes 6/4/2018:

1. There is a relationship between B12, B5, and Choline. These were borderline deficient per latest SpectraCell Test.
2. He wants to focus on optimizing acetylcholine production. Completely saturate acetylcholine requirements by increasing Lecithen to 1 Tbsp TID and adding DMAE 250 mg TID.
3. DMAE helps improve Choline to Acetylcholine conversion
4. Saturating acetylcholine should also help betaine. Betaine is found in most digestive enzymes. Therefore, this should help improve digestion which should translate to improved nutrient status.

Link to diagram.

[/QUOTE]

 

[renski]

Maybe unrelated but acetyl-l-carnitine has some effect on acetylcholine.

 

[renski]

@JasonUT, are you doing anything for detox (other then methylation)? Heavy metals and other toxins are always involved with these issues. Digestive issues/gut go together with heavy metals/toxins

 

[JasonUT]

@JasonUT, are you doing anything for detox (other then methylation)? Heavy metals and other toxins are always involved with these issues. Digestive issues/gut go together with heavy metals/toxins

Hello,

I have done metal, mold, and environmental toxin tests. All came back very good.

 

[Eastman]

2. He wants to focus on optimizing acetylcholine production. Completely saturate acetylcholine requirements by increasing Lecithen to 1 Tbsp TID and adding DMAE 250 mg TID.

Hopefully you don't end up like this.

 

[JasonUT]

I have a suspicion that the DMAE is overstimulating for me. I am going to stop taking it for a week and see what happens. However, I am going to continue with the 1 tbsp Lecithin TID.

Also, this research seems to suggest that DMAE may inhibit betaine.

https://www.ncbi.nlm.nih.gov/pubmed/2405150

Further research seems to show a very mixed reaction to DMAE.

 

[JasonUT]

Neurologist Appointment from 7/10/2018:

1. Reduced fludrocortisone from 0.20 to 0.15 mg. Due to slightly elevated blood pressure and concerns over side effects. Planning to hold 0.15 mg for at least 1 month.
2. Neurologist is intrigued with the Acetylcholine theory as it relates to my SpectraCell B1, B5, and Choline deficiencies. B1, B5, and Choline are all needed for Acetylcholine production.
3. As a result, Neurologist wants me to trial a Cholinesterase Inhibitors: Pyridostigmine Bromide. I told him I am interested, but want to wait at least 1 month until I get a good baseline dose on Florinef.
4. Ordered some special Mayo lab panel that is specific for POTS. I should have the results in 1 or 2 weeks.

Nutritionist Appointment from 7/17/2018:

1. Discussed hyperbaric oxygen as it relates to remodeling the ANS. Doc gave me some research documents on HBOT and POTS, but I haven't read through them yet.
2. Continuing on the Acetylcholine theory: He is also on board with a Cholinesterase Inhibitors, but prefers Galanatamin. I might trial this before I trial Pyridostigmine Bromide.
3. Discussed vinegar as a good source of Acetyl group to support Acetyl + Choline. He encouraged me to consume Vinegar + Pickles + Vinegar in foods during meals. He loves the benefits of Vinegar. Especially as it relates to glycogen production and the liver [Source]. He also mentioned that it improves glucose uptake in the cells to make the cells operate much more efficiently [Source]. There seems to be some body building articles on Vinegar as it relates to recovery and muscle fatigue [Source].
4. Also, briefly discussed trialing Acetyl-l-carnitine as both an Acetyl donor and the possibility of improving heart strength. Improved heart strength could get the blood flowing better.

 

[JasonUT]

Mayo autoimmune dysautonomia eval:

• N-type calcium channel Ab (VGCC) 0.10 (normal < 0.03)
• Neuronal K+ channel Ab (VGKC) 0.07 (normal < 0.02)
• ANNA-1 negative (normal)
• AchR ganglionic Ab 0.02 (normal)
• GAD65 Ab 0.02 (normal)
• P/Q type calcium channel Ab 0.00 (normal)
• LGI1-IgG antibody negative (normal)

Doc states that my N-type calcium channel Ab and Neuronal K+ channel Ab are slightly elevated. It is possible that this could be a false positive. However, he did state that N-type calcium channel Ab can affect Acetylcholine function and is associated with POTS. As a result, he is recommending the following possibilities:

• acetylcholinesterase inhibitor: Galantamine or Physostigmine
• 4 sessions of IVIG therapy over 4 days. Evaluate response 1-2 weeks later

 

[JasonUT]

IVIG and Cholinesterase Inhibitors Update:

1. I started 8 mg Glantamine at Breakfast on July 17. I believe there is a rather minor improvement. Maybe 5% at best. I am considering bumping up to 8mg BID on August 20 and trial for 1 month. I haven't decided. I am still researching.
2. Insurance has denied IVIG. Wants me to trial Pyridostigmine first.
3. Trialed Acetyl-L-Carnatine for about 1 week and it seemed over-stimulating in a bad way. Like turning up the volume on blown-out speakers.

Note: I incorrectly mentioned Physostigmine in my previous post. It should have read Pyridostigmine.

 

[JasonUT]

IVIG and Cholinesterare Inhibitor Update Number 2:

1. Galantamine trial didn't appear to work. With time it was mentally overstimulating in a bad way. Like I had too much caffeine.
2. Pyridostigmine trial didn't appear to work either. It had the opposite effect of Galantamine. Oddly, it made me feel very mentally slow and grumpy which don't appear to be listed side effects. Almost like I was drunk. Neuro Doc recommended I stop and I asked if a slow taper is okay. We agreed to a 2 week taper.
3. Neuro doc resubmitted IVIG Rx again due to slightly elevated VGCC and VGKC antibodies:
   • N-type calcium channel Ab (VGCC) 0.10 (normal < 0.03)
   • Neuronal K+ channel Ab (VGKC) 0.07 (normal < 0.02)
4. Four IVIG infusions are scheduled for week of Oct 15. I've been told to plan for 4-5 hour infusions since this will be my first time.

Trying to figure out how best to prepare for IVIG and strategies to minimize side effects.
@Gingergrrl @Learner1 @Ema @Nickster @helen1 @HeleneG @Jesse2233
Any feedback or recommendations? Any good reading materials to get me up to speed on IVIG?

 

[Nickster]

My son Nick takes both benadryl and tylenol before each IVIG and that helps to minimize any allergic issues. Also, drink lots of water because sometimes you can get a headache or flu like symptoms. Good luck!

 

[Ema]

IVIG and Cholinesterare Inhibitor Update Number 2:

1. Galantamine trial didn't appear to work. With time it was mentally overstimulating in a bad way. Like I had too much caffeine.
2. Pyridostigmine trial didn't appear to work either. It had the opposite effect of Galantamine. Oddly, it made me feel very mentally slow and grumpy which don't appear to be listed side effects. Almost like I was drunk. Neuro Doc recommended I stop and I asked if a slow taper is okay. We agreed to a 2 week taper.
3. Neuro doc resubmitted IVIG Rx again due to slightly elevated VGCC and VGKC antibodies:
   • N-type calcium channel Ab (VGCC) 0.10 (normal < 0.03)
   • Neuronal K+ channel Ab (VGKC) 0.07 (normal < 0.02)
4. Four IVIG infusions are scheduled for week of Oct 15. I've been told to plan for 4-5 hour infusions since this will be my first time.

Trying to figure out how best to prepare for IVIG and strategies to minimize side effects.
@Gingergrrl @Learner1 @Ema @Nickster @helen1 @HeleneG @Jesse2233
Any feedback or recommendations? Any good reading materials to get me up to speed on IVIG?

Hydration before and after, a slow flow rate and potentially steroids or Benadryl depending on how reactive you are. I would not hesitate to run it all day the first time and then try speeding it up later. But @Gingergrrl will have better info on flow rates for you.

 

[Gingergrrl]

@JasonUT I don't know how I missed this thread and thank you so much for tagging me! I am happy to help provide info re: IVIG and feel free to send me a PM if other questions.

Doc states that my N-type calcium channel Ab and Neuronal K+ channel Ab are slightly elevated. It is possible that this could be a false positive. However, he did state that N-type calcium channel Ab can affect Acetylcholine function and is associated with POTS.

I had no idea that anyone else (currently) on PR was diagnosed with the N-type CA+ channel Ab like me! (I am negative on the K+ Ab). I was initially diagnosed on the PAVAL Panel from Mayo in 2016 and recently re-tested the Abs after two years of treatment, except this time we did the DYS1 Panel (Mayo autoimmune dysautonomia eval) that you just did. I do not have the results back yet.

Can I ask why your doctor thought it might be a false positive? That is interesting that your doctor said the N-type CA+ Channel Ab is associated with POTS and I did not realize that there was a connection. Did s/he say anything more about this?

Pyridostigmine trial didn't appear to work either. It had the opposite effect of Galantamine. Oddly, it made me feel very mentally slow and grumpy which don't appear to be listed side effects. Almost like I was drunk. Neuro Doc recommended I stop and I asked if a slow taper is okay. We agreed to a 2 week taper.

Are you being followed by a neuromuscular specialist? I apologize that I was not able to read your entire thread but was wondering what your main symptoms are? Do you have POTS, muscle weakness, or breathing weakness?

I also did not do well with a very low dose trial of Mestinon (Pyridostigmine) in 2014.

Neuro doc resubmitted IVIG Rx again due to slightly elevated VGCC and VGKC antibodies:

• N-type calcium channel Ab (VGCC) 0.10 (normal < 0.03)
• Neuronal K+ channel Ab (VGKC) 0.07 (normal < 0.02)

My main doctor felt that IVIG was the only logical starting point to treat these autoantibodies and in my case, he was 100% correct. Do you test positive for other auto antibodies besides those two? Have you done the Cell Trend Panel from Germany?

Four IVIG infusions are scheduled for week of Oct 15. I've been told to plan for 4-5 hour infusions since this will be my first time.

So will you be doing high-dose IVIG in a 4-day split dose?

Trying to figure out how best to prepare for IVIG and strategies to minimize side effects. @Gingergrrl @Learner1 @Ema @Nickster @helen1 @HeleneG @Jesse2233
Any feedback or recommendations?

I have tons of recommendations and not sure how much info you want?!

1) Get tested for Hughes/ Anti-Phospholipid Panel before IVIG to make sure you are not a high blood clot risk.

2) Do as slow an infusion speed as humanly possible to reduce risk of aseptic meningitis, blood clots, strokes, and the severity of the IVIG headache that you will get. My maximum speed was 40 (which is insanely low) but it allowed me to do 82 grams of IVIG each 3-day cycle.

3) Make sure that you take the proper pre-meds for your individual case. I have MCAS and was considered a high anaphylaxis risk when I started IVIG. The ideal pre-meds for me turned out to be Atarax, Pepcid, and Tylenol and I did all my treatments at an outpatient infusion center (but many people do them at home if not an allergic risk).

4) Not all brands are the same and my MCAS doctor felt I had the greatest chance of tolerating Gamunex and was right. Some have higher IgA levels than others and in your pre-IVIG blood work, make sure that you do not have autoantibodies to IgA or this greatly increases your chance of allergic reaction (I did not have IgA autoantibodies so it was not a risk factor for me).

5) Most people do well with extra fluid, but I do poorly with it, so I did nothing but Gamunex and then D5-Dextrose to flush the line at the end (b/c Gamunex flushes with D5 vs. saline). Other brands can flush with saline though. Most people do saline before or after, but I can't tolerate that much fluid based on my history, and my IVIG alone took 7-8 hrs with my slow speed. You also would never run them concurrently per both of my docs and another autoimmune specialist that I consulted with. Many people do well with steroids, but I do not, so I did not take them.

Hydration before and after, a slow flow rate and potentially steroids or Benadryl depending on how reactive you are. I would not hesitate to run it all day the first time and then try speeding it up later. But @Gingergrrl will have better info on flow rates for you.

Thanks @Ema and we tailored my IVIG for greatest chance of me successfully tolerating it, so what I did might not be necessary for everyone, but it definitely worked for me. Hope this helps!

 

[JasonUT]

Can I ask why your doctor thought it might be a false positive?

The ab values are marginally elevated; however, he said my symptoms support a positive result; therefore, it is worth pursuing IVIG.

That is interesting that your doctor said the N-type CA+ Channel Ab is associated with POTS and I did not realize that there was a connection. Did s/he say anything more about this?

No

Are you being followed by a neuromuscular specialist?

Yes, two. One diagnosed me, but his clinic and infusion center is not very convenient for me. The second is in a major hospital with an infusion center which is much more convenient.

I apologize that I was not able to read your entire thread but was wondering what your main symptoms are? Do you have POTS, muscle weakness, or breathing weakness?

POTS and the typical symptoms that come with it.

Do you test positive for other auto antibodies besides those two?

These are the only two very specific positive antibodies.

Have you done the Cell Trend Panel from Germany?

No, but I have done Avise CTD (Link) and Avise SLE (Link). Only two things were positive.

1. ANA IgG - Positive 20 Units (Reference Range: Negative<20; Positive=20-59; Strong Positive>60)
2. HEp-2 cell fluoresence - Titer 1:160 with speckled pattern (Reference Range: Negative<1:80; Positive>1:80)

So will you be doing high-dose IVIG in a 4-day split dose?

I think so. Insurance approved Gamunex-C/Gammaked 500mg 6 sessions. I don't know how much will actually be given to me at each session. I am thinking 4 sessions over 4 days with 2 optional booster sessions.

1) Get tested for Hughes/ Anti-Phospholipid Panel before IVIG to make sure you are not a high blood clot risk.

Maybe this was part of Avise CTD (Link), but not sure.

4) ...and in your pre-IVIG blood work...

Hmmm... I was not aware of pre-IVIG blood work. Can you please expand on what this might include?

Hope this helps!

@Gingergrrl Absolutely!

 

[Gingergrrl]

The ab values are marginally elevated; however, he said my symptoms support a positive result; therefore, it is worth pursuing IVIG.

From research that I have read, and talking to prior Neuros, I was told that a very low autoantibody result could correlate with severe symptoms and a high one could correlate with minimal symptoms. The CA+ and K+ autoantibodies should be zero and anything above that, and certainly above the range, is positive.

Yes, two. One diagnosed me, but his clinic and infusion center is not very convenient for me. The second is in a major hospital with an infusion center which is much more convenient.

Sounds good. Where are you located (if you are comfortable sharing)? I still hope to find a good Neuro one day.

POTS and the typical symptoms that come with it.

So would the IVIG be in the hopes of reducing POTS symptoms (or for other things, too)?

No, but I have done Avise CTD (Link) and Avise SLE (Link). Only two things were positive.

I have never heard of those panels but looked at the links and they look interesting.

think so. Insurance approved Gamunex-C/Gammaked 500mg 6 sessions. I don't know how much will actually be given to me at each session. I am thinking 4 sessions over 4 days with 2 optional booster sessions.

I am confused by the 500 mg and IVIG is usually in grams vs. milligrams. I was trying to figure out how they would give 500 mg in 6 sessions and am now wondering if you are having SCIG vs. IVIG?

Hmmm... I was not aware of pre-IVIG blood work. Can you please expand on what this might include?

I assume it varies for each person depending on your risk factors and history. I am not sure that there is any standard set of blood work. I would assume you'd test IgG sub-classes, IgM, IgA, IgE, etc, the Hughes/ Anti-phospholipid panel, etc. I can't remember what else we looked at back in 2016 before I started.

@Gingergrrl Absolutely!

Thanks and best wishes and glad I could help!

 

[JasonUT]

I spoke with the infusion nurse and got more details...

From research that I have read, and talking to prior Neuros, I was told that a very low autoantibody result could correlate with severe symptoms and a high one could correlate with minimal symptoms. The CA+ and K+ autoantibodies should be zero and anything above that, and certainly above the range, is positive.

Interesting. Can you point me to any published articles or research?

So would the IVIG be in the hopes of reducing POTS symptoms (or for other things, too)?

Yes, POTS is primary. Doc also officially diagnosed me with LEMS and Autonomic Neuropathy. LEMS can cause Dysautonima symptoms. It appears I have essentially been drilling down to a much more focused and specific diagnoses: CFS/ME > POTS > LEMS. I have a lot of other annoying non-specific symptoms that fall under the massive umbrella that is Dysautonomia and ME/CFS.

I am confused by the 500 mg and IVIG is usually in grams vs. milligrams. I was trying to figure out how they would give 500 mg in 6 sessions and am now wondering if you are having SCIG vs. IVIG?

Nurse said 30g daily for 4 days. Total is 120 mg. I weight 61 kg; therefore, this seems like the standard 2g per 1 kg dosing for autoimmunity.

I assume it varies for each person depending on your risk factors and history. I am not sure that there is any standard set of blood work. I would assume you'd test IgG sub-classes, IgM, IgA, IgE, etc, the Hughes/ Anti-phospholipid panel, etc. I can't remember what else we looked at back in 2016 before I started.

Nurse said they will do a blood draw the morning of my first infusion to check a number of things: Liver, Kidney, CBC panels. They don't normally run IgX panels for autoimmunity diagnosis unless immunodeficiency is suspected.

 

[Gingergrrl]

Interesting. Can you point me to any published articles or research?

I am happy to look for articles as soon as I can. When I researched this in early 2016, I was extremely ill and did not have the most organized system but I am certain that I can find some. I have my notes where three Neuros told me that CA+ channel autoantibody levels do not correlate with the severity of symptoms but I will find you a published article and post it here later.

Yes, POTS is primary. Doc also officially diagnosed me with LEMS and Autonomic Neuropathy. LEMS can cause Dysautonima symptoms. It appears I have essentially been drilling down to a much more focused and specific diagnoses: CFS/ME > POTS > LEMS. I have a lot of other annoying non-specific symptoms that fall under the massive umbrella that is Dysautonomia and ME/CFS.

I'd love to talk to you further re: all of this b/c our cases are so similar! POTS was primary for me, too, and was my second official diagnosis after Hashimoto's. During that time period (2013 and 2014) all doctors gave me a diagnosis of "CFS" as well (no one uses the term "ME" in the US). It was not until recently that my POTS diagnosis officially became "Autoimmune POTS" and my doctors agreed that I have LEMS vs. ME/CFS.

I'm not a perfect match for LEMS and had profound upper body weakness (neck, shoulders, arms, lungs) etc, vs. lower body weakness which seems to be the most common in LEMS. I am also positive for the N-type CA+ Channel autoantibody (vs. the P/Q type which is most common in LEMS) but it seems that you are also only positive for the N-type vs. P/Q type? I was also negative on an EMG but it was a very poorly conducted and not the "single fiber" EMG which is the gold standard for LEMS.

Did you have an EMG which led to your diagnosis? I belong to a private LEMS group on FB and there are people with the diagnosis who are sero-negative and/or negative on EMG but have the clinical symptoms. I am positive for the autoantibody like you, and had the symptoms, but was negative on EMG (all prior to 2 yrs of treatment). We are awaiting my results on Mayo DYS1 Panel to see if I still test positive for the autoantibody.

Do your doctors think that you have POTS and LEMS or that the POTS and autonomic dysfunction are PART of the LEMS? Do you have muscle weakness (arms, legs, or both?) or breathing weakness or only POTS & autonomic dysfunction? You mentioned having "annoying non-specific symptoms that fall under the massive umbrella that is Dysautonomia" and I was curious what they were?

It's also interesting that your Neuro said you might be a "false positive" but then diagnosed you with LEMS. It is all so confusing!

Nurse said 30g daily for 4 days. Total is 120 mg.

The 30 grams per day in a 4-day cycle makes perfect sense but I think you mean that the total is 120 grams (not mg). My dose was 27.3 grams per day in a 3-day cycle for a total of 82 grams per cycle.

I weight 61 kg; therefore, this seems like the standard 2g per 1 kg dosing for autoimmunity.

This makes sense. Are you only authorized for one IVIG cycle to see how you tolerate it before they ask for more?

Nurse said they will do a blood draw the morning of my first infusion to check a number of things: Liver, Kidney, CBC panels. They don't normally run IgX panels for autoimmunity diagnosis unless immunodeficiency is suspected.

The reason we did the IgX panels is because if someone has autoantibodies to IgA, then they would need to choose a brand of IVIG that is very low IgA (and they all vary). If you have autoantibodies to IgA, it increases the chance that you will have an allergic reaction to IVIG and I was already highly allergic at that time from MCAS (which is also why we wanted to check my IgE level). Additionally, I had elevated IgM (vs. low IgM) and we wanted to check all levels prior to starting IVIG as a baseline. We were not doing the testing for immune deficiency (in my case). I still have elevated IgM but we have now ruled out MGUS and cancer as the cause for it with additional testing.

Did your doctor(s) order a lung cat scan since the LEMS autoantibody often correlates with small cell lung cancer (SCLC)? I had one in 2015, 2016, and 2017 (all clear) and we are deciding if it's worth it for me to repeat since it is so much radiation and I am in remission now (vs. if I had SCLC which is a fast aggressive cancer, I would be worse, not so dramatically better).