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HSV-6 EBV superinfection theory for SEID CFS

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
First I'd like to say that I'm extremely frustrated at the lack of progress being made in discovering the pathogenesis and effective treatments for SEID (CFS) and now long covid. In my own case, I have a good history of what triggered it. First I contracted EBV then during the convalescent phase, about six weeks post-infection, I contracted HSV-6 and started showing signs of apoptosis (muscle twitching) that subsided with a lowered body temperature, cold skin and the classic signs of SEID.

What is interesting was that several years later my EBV labs turned negative but HSV-6 remained positive. The explanation for this is that perhaps HSV-6 was able to superinfect previously infected (immortalized) EBV cells, shut down their replication and give a much larger reservoir than a normal HSV-6 infection. This is why in that study on valganciclovir the EBV HSV6 positive patients did better on the drug than the other SEID cases.

If this is what is happening then an effective treatment would 1) stop HSV-6 viral replication and 2) destroy the infected cells or cut out the HSV-6 virus from the cell's DNA.

I have had success stopping the SEID progression and regaining some function by using supplements to unblock HSV6 apoptosis checkpoints but so far I have not been able to make enough progress in the mitochondrial fragmentation fatigue. So far I have been able to.
  • Cure Raynaud's disease.
  • Raise body temperature 0.5 deg F. (97F to 97.5F)
  • Almost completely eliminate light and sound hypersensitivity.
  • Lower symptoms of depression and anxiety.
I have asked my PCP MD to prescribe a trial of valganciclovir to see if it might help.
 

Judee

Psalm 46:1-3
Messages
4,543
Location
Great Lakes
Just need clarification: When you say HSV-6 do you mean HHV-6? Pardon my confusion, I've just never seen it that way.

Interesting what you said about one virus superinfecting previously infected EBV cells. I had Mono at 12 but when I was tested about 15 years ago for both only HHV-6 showed.

Have you done a post with the supplements you've used to get as far as you have. I also have Reynaud's and it's getting worse each year. Plus some of the other things apply as well.

Also wanted to say that I'm very glad to see you back on the site again @gbells. :)
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
Just need clarification: When you say HSV-6 do you mean HHV-6? Pardon my confusion, I've just never seen it that way.

Interesting what you said about one virus superinfecting previously infected EBV cells. I had Mono at 12 but when I was tested about 15 years ago for both only HHV-6 showed.

Have you done a post with the supplements you've used to get as far as you have. I also have Reynaud's and it's getting worse each year. Plus some of the other things apply as well.

Also wanted to say that I'm very glad to see you back on the site again @gbells. :)
Yes, HHV-6. Thanks Judee.
I am esp. interested in this one. What medications/supplements did you use? Do I get it right you targeted HSV-6?
The regimen is very complicated. First I used GcMAF, ashwaghanda and curcumin which reversed low immunity but I think the GcMAF regimen went too long at 6 months and triggered systemic lupus erythematosis. I would only have done it for 4 or 5 months if I were to do it over.

I'm currently using terpenes (pinene, limonene and b-carophylene), magnolia bark, curcumin, shitake mushroom extract, astralagus, peau d'arco, galangal extract, red pepper, broccoli sprout extract, berberine, nicotine, licorice tea as a general viral inhibitor and sildenafyl for blood flow. So far I've been able to eliminate Raynaud's disease, brain fog and reduce light/sound sensitivity, anxiety and depression about 80%. But the fatigue is really hard to beat. My fatigue is still around 65% which is better than the 80% I was initially so that's an improvement. Body temperature is increased.

I dose these supplements twice daily at 11am-2pm and 6pm in small amounts (about 100mg) except for the terpenes which need higher amounts. I make a mix of them with 22 drops of pinene and 44 drops each of the others in a large 5 oz dropper bottle and suspend in MCT oil. I take 1 tsp 2x/day sublingually.

A lot of the infected tissue appears to be in the bone marrow, causing periostitis, and in the connective tissue and I've been treating that with cross friction massage and combined breath holding stretching exercises to break down the tender areas.

It has been really important to use high repetition exercises with minimal breathing in the tender areas to generate a lot of lactic acid which is a vasodilator and helps get the supplements in.

Apoptosis is really difficult initially and goes through cycles of pain, numbness, hypersensitivity and healing. People have to get really good at pain management to handle it (meditation for chronic pain, vicodin in the early stages, stacked pain drugs tylenol and ibuprofen).

I also used rhodolea and CBD for the depression and lavender oil extract in water for anxiety but those are much less frequent at this point.

My approach was to identify and reverse known apoptosis blockages for EBV, HHV6 and herpez zoster with the supplements and then let the body do it's thing. HHV6 does block EBV somehow and I have been negative on blood tests for EBV for many years now. However at this point I still have some periostitis in the hands, feet and chest regions.

Grounding for longer than a few minutes will inhibit the whole thing so never sleep grounded but it is good to help at the early stages to take a short break from the apoptosis which can be very intense and painful.

However I don't know if I were to stop whether I would backslide with worsened symptoms. I want to clear all the periostitis before I try. In the past I have stopped and everything started reversing so the viruses are still a problem. However now I have a vigorous immune system, even autoimmune disease, so maybe it can handle more.

I have a lead that stress increases the HHV6 replication so I'm going to add ashwagandha back and see if it helps.

I also take antiaging and nootropic (mind) supplements which I started a few years ago and help with thinking, exercise recovery and to a minor extent, energy.

Pain management, stress management and light exercise are also important.

Overall the regimen has given me huge gains and kept me functional, I'm just hoping that I can reach a stable endpoint and recover the energy deficit.
 
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consuegra

Senior Member
Messages
181
Just need clarification: When you say HSV-6 do you mean HHV-6? Pardon my confusion, I've just never seen it that way.

Interesting what you said about one virus superinfecting previously infected EBV cells. I had Mono at 12 but when I was tested about 15 years ago for both only HHV-6 showed.

Have you done a post with the supplements you've used to get as far as you have. I also have Reynaud's and it's getting worse each year. Plus some of the other things apply as well.

Also wanted to say that I'm very glad to see you back on the site again @gbells. :)
Hi,
This is fascinating. Are you HHV-6 positive by antibodies or PCR or both?
Thanks,
Chris
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
HHV-6 pos antibodies, EBV neg ever since the infection.

I've never posted the supplements here before. It's been through a lot of iterations. Supplements are specific for what chronic viruses a person has been exposed to.

The current list took 15 years of research and trial and error to determine.

Doctors are of very little help. Integrative doctors are just like naturopaths, they just treat symptoms with a few more supplements. Medical doctors do the same with drugs and capitate care to save money for insurance companies.

(Note: added Berberine and Broccoli sprout extract to above list which were missing. Berberine dose is 1-2 g day.)
 
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Judee

Psalm 46:1-3
Messages
4,543
Location
Great Lakes
Are you HHV-6 positive by antibodies or PCR or both?
The test was an antibody test and only IgG showed high titres...not massively high but still flagged by the lab. 1:160, I believe.

I have IgM deficiency. The doctor who ordered the test said that the deficiency could affect the IgM portions of these type of tests meaning show a false negative for that portion. A lab I emailed said the same thing but Idk.

Did you see the post here somewhere regarding HHV6, EBV and some others showing in the saliva of ME patients who got Covid-19 but not in the non- ME patients?
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
Here was my test in 2014. (Very high)
HHV-6, IgG Antibodies Quant
index
Value 5.51 (High)

Neg <0.76
Equivocal 0.76-0.99
Positive >0.99

BN-LabCorp Burlington, NC
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
Here is a new Development

We have some hope.

There a lead on a new CFS therapy which might be a cure. The idea is to use CAR-T to gene edit B and T cells infected with HHV-6 to inactivate the virus. CAR-T therapy has already successfully knocked out genes and has a high rate of success 80-98%.

NIH is actively doing CAR-T gene therapy trials and I think they might pick this one up due to the huge CFS disability costs.
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
As a lead up to the CAR-T therapy, I proposed to NIH that they run a study to see if they could induce CFS in Rheusus Macau monkeys by infecting them with EBV followed by HHV-6 to prove the coinfection hypothesis. That would support developing the CAR-T therapy.
 
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