Synapsin RX

Alzheimer's, cardiovascular, and other chronic diseases; biomarkers, lifestyle, supplements, drugs, and health care.
Plumster
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Re: Synapsin RX

Postby Plumster » Sun Mar 17, 2019 9:22 am

Thanks, Slacker. I'll look into testing.
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR

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seaweed
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Re: Synapsin RX

Postby seaweed » Sun Mar 17, 2019 11:13 am

Plumster wrote: I took the visual contrast test yesterday and think I did okay? (total score 39/45 (87%); biotoxin score 17/18 (94%))

I see that the visual contrast test is the way to find out if someone is getting better with treatment for biotoxins (source: https://www.survivingmold.com/docs/UNDE ... DITV2A.PDF). Any thoughts on follow-up tests I should consider to be absolutely sure or should I assume I'm good? Nasal culture test mentioned in Bredesen's book? .


Like Slacker, I never actually failed the visual contrast test, but my blood work confirmed the diagnosis. So I don't think the test can be used to officially rule anything out without further testing.

I knew there was mold growing on a wall in my old house, but a slow water heater leak was discovered after I moved out of that house as well.

Once I started treatment, I was able to do better on the visual contrast test and actually see things in the last column.

Did you related at all to the brain fog, fatigue, or "brain on fire" type anger symptoms that were being described?

If you're not having symptoms I guess it may not be an immediate concern, but if you are having symptoms maybe just get your C4a and C3a checked. If you have a lot of inflammation, you may want to seek further testing.

Now that I've been working through the protocol for awhile, I feel better than I have in YEARS.
4/4 & CIRS (lyme + mold)

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Re: Synapsin RX

Postby Plumster » Sun Mar 17, 2019 11:27 am

Did you related at all to the brain fog, fatigue, or "brain on fire" type anger symptoms that were being described?

If you're not having symptoms I guess it may not be an immediate concern, but if you are having symptoms maybe just get your C4a and C3a checked. If you have a lot of inflammation, you may want to seek further testing.

Now that I've been working through the protocol for awhile, I feel better than I have in YEARS.


Seaweed, so glad you are seeing significant improvements! That's very encouraging to hear.

My first big mold exposure happened in 2010. Then a second one 2013-15. There may be symptoms that I've had for so long I just assume they are my norm now? I think I did have brain fog and problems finding words. I could still? Or is that just me at 49 with sleep issues? Fatigue, yes. No anger outbursts. I guess I'm just not sure anymore. I agree that it's worth pursuing this further. I'll get tested for C4a and C3a. If you think of any other tests I should request from my doctor, please let me know! Thanks for your help.
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR

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slacker
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Re: Synapsin RX

Postby slacker » Sun Mar 17, 2019 6:28 pm

Plumster wrote: I agree that it's worth pursuing this further. I'll get tested for C4a and C3a.


Different CIRS providers have varying approaches to evaluating for CIRS. I asked my FM/CIRS MD for the budget plan, and we started with TGF beta 1 and MSH, both pointing in the direction of CIRS. At that time, you had to go to Jewish National in CO to get the C4a done, so I never did so. It's possible that you can get it now at a local Quest or Labcorp. My next CIRS test was the HLA DR/DQ, which like seeweed, indicated one "dreaded" haplotype with multi susceptibility to biotoxins. And finally, a MMP9 is also elevated. None of these test tell you what biotoxin is driving the problem. My understanding is the C3a is an inflammatory protein that goes up with exposure to bacteria, such as Lyme.

You might want to review Dr Bredesen's recommendations on testing, as well as the Surviving Mold website. These are pretty unusual tests, rarely ordered, and typically expensive.

There are a few other threads on CIRS: Check them out here and here if you are interested in a deeper dive.
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Re: Synapsin RX

Postby Chameleon » Sun Mar 17, 2019 6:54 pm

Yes, a VCS test can help you to solidify a mold illness diagnosis, but if you "pass" it - it doesn't mean you still don't have an illness with mold.
The blood biomarkers are ok - they can indicate inflammation, but are also not definitive for mold. I also like the GPL Mycotoxin test.

I work with a doctor who prescribes synapsin as well. I also thought I had heard that you may be able to use VIP sooner than at the end of the Shoemaker protocol.
I would also recommend the book - Toxic by Dr. Neil Nathan.

Just some thoughts to share.....

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Re: Synapsin RX

Postby seaweed » Mon Mar 18, 2019 7:24 am

slacker wrote:
Plumster wrote: I agree that it's worth pursuing this further. I'll get tested for C4a and C3a.


Different CIRS providers have varying approaches to evaluating for CIRS. I asked my FM/CIRS MD for the budget plan, and we started with TGF beta 1 and MSH, both pointing in the direction of CIRS. At that time, you had to go to Jewish National in CO to get the C4a done, so I never did so. It's possible that you can get it now at a local Quest or Labcorp .



You can get all of the testing done through certain Quest locations now, as of December 2018. My doctor also ordered all of the other tests Slacker mentioned and all of my levels indicated CIRS. (C3a as a differential diagnosis for lyme since I had tested positive in the past)
4/4 & CIRS (lyme + mold)

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Re: Synapsin RX

Postby seaweed » Mon Mar 18, 2019 4:21 pm

I have insurance and tests were covered through either lab corp or quest, along with the NeuroQuant MRI. The only thing not covered were the MARCoNs cultures
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Re: Synapsin RX

Postby rebdeb » Sat Mar 23, 2019 12:39 am

My husband started synapsin a few months ago. A few other new supplements and meds added around same time, but he has definitely improved specifically less foggyepisodes of staring blankly, return of language (has expressive aphasia and was down to single few words), and disappearance of sensitivity to noise. Can't say it's only synapsin but hoping this continues. Stage 5/6 Alzheimer's and apoe4/4. Sees Bredesen doctor. He transitioned to memory care living this month but comes out with me daily for walks or meal or to see friends. The facility cannot handle his 15-20 pills 2-3 times a day (not enough staff to sit with him while he takes them all) so I have to cull the list. synapsin is staying.

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Re: Synapsin RX

Postby NF52 » Sun Mar 24, 2019 6:39 am

rebdeb wrote:My husband started synapsin a few months ago. A few other new supplements and meds added around same time, but he has definitely improved specifically less foggyepisodes of staring blankly, return of language (has expressive aphasia and was down to single few words), and disappearance of sensitivity to noise. Can't say it's only synapsin but hoping this continues. Stage 5/6 Alzheimer's and apoe4/4. Sees Bredesen doctor. He transitioned to memory care living this month but comes out with me daily for walks or meal or to see friends. The facility cannot handle his 15-20 pills 2-3 times a day (not enough staff to sit with him while he takes them all) so I have to cull the list. synapsin is staying.
Hi Debby,

Thank you for taking the time to share your husband's experience with synapsin. I am sure Dr. Hathaway is pleased with his response also, since I went back and saw how supportive she was in her evaluation about a year ago. It sounds like the move to memory care has been fairly smooth and I'm sure that those daily walks, and visits to friends and restaurants are also helping him. As someone who is about the same age as your husband (almost 67) and also 4/4, I have told my husband many times that I want him to make that decision if and when I need it. And like you, he will make sure I still have many reasons to talk and smile.
4/4 and still an optimist!

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Re: Synapsin RX

Postby Plumster » Thu Apr 25, 2019 12:36 pm

I have had 2 normal visual contrast tests (VCT), and a pretty obvious case of CIRS based on labs, mold levels in my house, and symptoms. So while I'm not offering an answer to your question, I did want to alert you to the possibility that the VCT might give a false sense of security. From my experience, CIRS is a murky condition indeed.


So, while I aced the Visual Contrast Test, I failed the following lab tests: C4a, MSH, ADH, and MMP-9. I also have the mold susceptibility genes HLA-DR/DB. :cry:

I'm not in the home that had mold and am about to start treatment: cholestyramine, activated charcoal, and King Chlorella--while we await my Marcons test results. She said to take 3-4g of fish oil per day for 3-4 days before beginning cholestyramine.

I asked her about Synapsin and she couldn't find it at a regular pharmacy and asked me where it is being dispensed? Does anyone know the answer?
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR


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