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Things I am currently trying

tiredowl

Senior Member
Messages
170
Location
Norway
These supplements seem to have some good effects on my fatigue:

Mutaflor (1 suspension every other day, just started taking this recently, so not too much to say yet, they're very expensive. :( ) Take at night to not let other supplements potentially kill it. I order from Germany, they arrive with ice packs.
NIAGEN 100mg (Mutaflor supposedly raises NAD, so this could potentiate it?) has some quick energizing effects.
Curcumin, once daily. I read this protects HPA axis. It's also antiviral, antibacterial.
Q10 200mg, for mitochondrial support. Helps my severe muscle weakness.
PQQ 20mg, a few times a month. for mitochondrial health.
B1 30MG sublingual (Thiamine) for energy, sometimes take b complex.
Transdermal magnesium + Vit D
Chlorophyll 1tsp.
Powerful detoxer. Also reduces aflatoxin absorbtion in gut.

For virus: TOA free Samento tincture. I read this had potent effects against viruses.
Not sure if I have lyme or not, but I've been bitten by ticks before.

I might have forgotten something... sometimes forget to take supplements because of brain fog unfortunately, but will update if I remember something else.

Currently seeing a new neurologist here in Norway. So far she seems pretty knowlegdeable about ME/CFS. I was considering asking for referral for private rituximab, but since the trial failed, I'm not sure.
 
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jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
Duloxetine is na anti-depressive drug, used frequently for chronic pain. It heped me a lot.
L-Carnitine, without any doubt.
 

tiredowl

Senior Member
Messages
170
Location
Norway
Duloxetine is na anti-depressive drug, used frequently for chronic pain. It heped me a lot.
L-Carnitine, without any doubt.
That's great. It's probably because certain antidepressants have immunemodulatory effects as well.

Wish I could take L-Carnitine, but I think it supresses thyroid in me.
 

tiredowl

Senior Member
Messages
170
Location
Norway
So I'm having good effects from the Mutaflor, clears my head... However only as long as I take it unfortunately. And I've been still crashing a lot lately.
I also realized that curcumin could potentially be killing it off, so maybe I will take a break from that.
 

ChrisD

Senior Member
Messages
472
Location
East Sussex
My current list: Morning:
- NT Factor
- MitoQ
- Carnitine, Ribose, creatine, glycine, TMG, Taurine, NAC, Quercetin, electrolytes - mixed with water

With Lunch: Omega 3, Digestive enzymes

Evening:
- CBD Oil
- Magnesium, Zinc, Biotin, Selenium
- Arginine and Ornithine

Probiotic (at varying times away from meals): - Trying Equilibrium but may go back to VSL3 as noticed a difference with this one.

High Fat Ketogenic Diet

This all keeps me at a level where I am able to go out for a short walk most days without terrible PEM, still constant fatigue but more manageable and mildly more refreshing sleep. I generally feel more comfortable, happy, confident of recovery but I am still at 10% of my full physical potential.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@ChrisD - how long have you been on the keto diet? Have you had any problems with it? I'm considering giving it a try, primarily for sleep issues, though losing weight would be an added benefit for me! :whistle:

I just read recently that it is supposed to help with sleep and one of my (adult) sons is doing it for sleep also. I knew he had done it for weight loss, but its effect on sleep was new info for me.
 

tiredowl

Senior Member
Messages
170
Location
Norway
My current list: Morning:
- NT Factor
- MitoQ
- Carnitine, Ribose, creatine, glycine, TMG, Taurine, NAC, Quercetin, electrolytes - mixed with water

With Lunch: Omega 3, Digestive enzymes

Evening:
- CBD Oil
- Magnesium, Zinc, Biotin, Selenium
- Arginine and Ornithine

Probiotic (at varying times away from meals): - Trying Equilibrium but may go back to VSL3 as noticed a difference with this one.

High Fat Ketogenic Diet

This all keeps me at a level where I am able to go out for a short walk most days without terrible PEM, still constant fatigue but more manageable and mildly more refreshing sleep. I generally feel more comfortable, happy, confident of recovery but I am still at 10% of my full physical potential.
Thanks for sharing!
What does the NT Factor help with? I've seen it mentioned somewhere.
 

Gingergrrl

Senior Member
Messages
16,171
TOA free Samento tincture. I read this had potent effects against viruses. Not sure if I have lyme or not, but I've been bitten by ticks before.

I was considering asking for referral for private rituximab, but since the trial failed, I'm not sure.

@tiredowl I saw your post in the Rituximab thread and didn’t get a chance to reply there yet and then I saw this one. If you think that you might have Lyme or active bacterial infections (versus autoimmunity), then Ritux would do nothing to treat this and could be dangerous.

Can you get tested for Lyme and also for autoantibodies so you know which direction to pursue?
 

tiredowl

Senior Member
Messages
170
Location
Norway
@tiredowl I saw your post in the Rituximab thread and didn’t get a chance to reply there yet and then I saw this one. If you think that you might have Lyme or active bacterial infections (versus autoimmunity), then Ritux would do nothing to treat this and could be dangerous.

Can you get tested for Lyme and also for autoantibodies so you know which direction to pursue?
Hi : ) Thanks for reading. Well I probably did have lyme at some point as I got bitten when I was younger. but it's been 10 years, and I heard that lyme infections go away or burn out after 10 years or so?
Also you got the rituximab if I am correct?

I'm still not sure... I mean they say Lyme isn't a real condition, so getting treated for that would be even harder it seems haha. :( And antibiotics just wipe out our entire microbiome, not sure if that's a good thing if we are trying to fix it.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks for sharing!
What does the NT Factor help with? I've seen it mentioned somewhere.
NT Factor has the lipid constituents of the mitochondrial membranes in the correct ratios. It was developed by Garth Nicolson and licensed to 2 companies that make it.

There is a competitor treatment, Body Bio, centered around just phosphatidyl choline, instead of the more comprehensive set of lipids and developed by Dr. Patricia Kane and her husband.
 

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Gingergrrl

Senior Member
Messages
16,171
but it's been 10 years, and I heard that lyme infections go away or burn out after 10 years or so?

I do not have Lyme and honestly do not know the answer to that question. I know there are cases where the person is treated with antibiotics right away and they seem to be cured. But other cases where treatment was delayed or ineffective and they are on long-term IV antibiotics. I was tested for Lyme in 2010, 2012, and 2014 and was negative on all tests with zero bands even equivocal. I was also tested for co-infections and all were negative. I am truly the wrong person to ask about this and I have never been bit by a tick and have not researched it at all.

I'm still not sure... I mean they say Lyme isn't a real condition, so getting treated for that would be even harder it seems haha. :( And antibiotics just wipe out our entire microbiome, not sure if that's a good thing if we are trying to fix it.

I'm hoping some of the people w/Lyme can help you with this one.

Also you got the rituximab if I am correct?

Yes, I am getting Rituximab (in the US) and my 5th infusion is this Friday. I have done well with it and have not had any problems whatsoever (but we did test first that I do not have active infections, and I have never had hepatitis or TB which can re-activate with Ritux). I was a good candidate and did a full year of IVIG first and test positive for 11 autoantibodies (and probably more). I felt it was worth the risk, and still feel this way, but if I had active Lyme, or if I was not 100% certain of having the autoantibodies, I would not have done it randomly. Hope this helps.
 

tiredowl

Senior Member
Messages
170
Location
Norway
I do not have Lyme and honestly do not know the answer to that question. I know there are cases where the person is treated with antibiotics right away and they seem to be cured. But other cases where treatment was delayed or ineffective and they are on long-term IV antibiotics. I was tested for Lyme in 2010, 2012, and 2014 and was negative on all tests with zero bands even equivocal. I was also tested for co-infections and all were negative. I am truly the wrong person to ask about this and I have never been bit by a tick and have not researched it at all.




I'm hoping some of the people w/Lyme can help you with this one.



Yes, I am getting Rituximab (in the US) and my 5th infusion is this Friday. I have done well with it and have not had any problems whatsoever (but we did test first that I do not have active infections, and I have never had hepatitis or TB which can re-activate with Ritux). I was a good candidate and did a full year of IVIG first and test positive for 11 autoantibodies (and probably more). I felt it was worth the risk, and still feel this way, but if I had active Lyme, or if I was not 100% certain of having the autoantibodies, I would not have done it randomly. Hope this helps.
Yeah I've also heard horror storries of people not getting better by high dose antibiotics, instead they got worse. :(

Wow, that's so great. Are you feeling any benefits from it yet ? I heard it could take a few months.
Well they called me from the center today, and asked if I wanted to set up an appointment.
It's a bit of traveling, so I'm still not quite sure. I'm going to think about it I think.
Thanks for sharing!
 

Gingergrrl

Senior Member
Messages
16,171
Yeah I've also heard horror storries of people not getting better by high dose antibiotics, instead they got worse. :(

I have heard this as well but I do not have Lyme and truly am the wrong person to even give an opinion on this.

Wow, that's so great. Are you feeling any benefits from it yet ? I heard it could take a few months. Well they called me from the center today, and asked if I wanted to set up an appointment. It's a bit of traveling, so I'm still not quite sure. I'm going to think about it I think. Thanks for sharing!

I assume you are talking about Kolibri? I have heard mixed things about it and they do not sound as thorough as my doctors in the US re: the whole process of pre-screening, administering, and monitoring the Rituximab. But I have not been there myself and you might want to talk to other patients who have.

I have had significant improvements from it, combined with high dose IVIG. My first Ritux infusions (which were two weeks apart) were July/Aug last year and then I have done it every three months with infusion #5 this Fri. I have a long thread about it on PR if you want to read it (but warning, it is long and veers off topic several times)!
 

ebethc

Senior Member
Messages
1,901
So I'm having good effects from the Mutaflor, clears my head... However only as long as I take it unfortunately. And I've been still crashing a lot lately.
I also realized that curcumin could potentially be killing it off, so maybe I will take a break from that.

how long have you been taking mutaflor?
 

renski

Senior Member
Messages
338
Location
Honolulu
@tiredowl I saw your post in the Rituximab thread and didn’t get a chance to reply there yet and then I saw this one. If you think that you might have Lyme or active bacterial infections (versus autoimmunity), then Ritux would do nothing to treat this and could be dangerous.

Can you get tested for Lyme and also for autoantibodies so you know which direction to pursue?

Hi @Gingergrrl,

What sort of autoantibodies would someone be looking for? I've had stuff like ANCA, ASCA tested which came back positive, but most other autoimmune came back clear. I think I have bartonella/babesia, I went to an immunologist who treats autoimmune encephalitis and he didn't have any issues with the blood tests but said we could try treatments like IVIG. they also offered to do test on the spinal fluid but havent done it yet
 
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Gingergrrl

Senior Member
Messages
16,171
What sort of autoantibodies would someone be looking for? I've had stuff like ANCA, ASCA tested which came back positive, but most other autoimmune came back clear.

@renski I just saw your tag and apologize I am not able to re-read this thread at the moment but Googled the two tests you mentioned and assume they are autoantibodies for Crohns vs. Ulcerative Colitis? I am not sure which tests you would need (from your question) but in general, I found that the autoantibody panels from the Mayo Clinic's Lab are the most comprehensive and most respected by other doctors and by insurance companies. Your doctor would have to choose which panels were most relevant in your case based on your symptoms. The Mayo Panels that I had were PAVAL, Myasthenia Gravis & MuSK, GAD65, and later DYS1 (which I believe is now called DYS2).

I think I have bartonella/babesia

Can your immunologist or an infectious disease (ID) specialist test you for these to confirm?

I went to an immunologist who treats autoimmune encephalitis and he didn't have any issues with the blood tests but said we could try treatments like IVIG.

Mayo has several tests & panels to check for autoimmune encephalitis, too. And your doctor just has to send the blood sample to Mayo's Lab, you do not actually have to go there (and I have never been there). Even Quest can draw the samples and send to Mayo if your doctor requests it. I do not recommend Mayo for any treatment, only for lab tests. Did your doctor mean that you could try high dose IVIG for autoimmunity or low dose for immune deficiency (or possible tick borne infections that you mentioned above)?
 

renski

Senior Member
Messages
338
Location
Honolulu
@Gingergrrl

Yep autoantibodies for Crohns, I've had some autoantibodies tested but not everything it seems, I don't know if any doctors here (Australia) use the Mayo clinic panels. I've had bartonella show up on a few different blood tests and babesia as well, and the ART testing picked it up as well. This doctor treats autoimmune encephalitis but wouldn't recognise lyme or anything like that. Only the odd medical doctor or naturopathic doctors would recognise it, but doubt they would use IVIG for it here. The doctor said could try some treatments for autoimmunity I'm guessing but nothing shows up in the blood work I've had done to suggest autoimmunity? my blood tests are normal so don't think I have immune deficiency. I do have functional issues like gut, methylation but have gotten sicker trying to address these things.
 

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