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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Anyone here used HIV/AIDS treatment for CFS?

Vineyard1

Senior Member
Messages
109
Greetings,

Do you mind telling me the dosage and frequency that you use Lysine, Zantac and Cycloferon x 10 days to stop shingles? Also, do you know where I can purchase quality Cycloferon....I am in the U.S.

Thanks so much!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,104
Location
australia (brisbane)
Greetings,

Do you mind telling me the dosage and frequency that you use Lysine, Zantac and Cycloferon x 10 days to stop shingles? Also, do you know where I can purchase quality Cycloferon....I am in the U.S.

Thanks so much!

Lysine 2 to 3 grams twice a day. Zantac was 150mg twice a day only for a few days. Cycloferon injections one every second day for 10 days or cycloferon tablets 2 to 4 tablets on empty stomach every second morning for 10 days.
http://pharmalad.com unless you live in ukraine their shopping basket doesnt work. Your best to email them and they will give you details. Generally pay by paypal
 

Knockknock

Senior Member
Messages
212
@undiagnosed This is a global problem, many countries have, Japan, Southeast Asia, Russia, Africa, China, have to ask the state to help, we must unite, I believe will be the government's financial help
All this goverments dont want to fund anything that pin point to a retroviral or infectious etiology of this disease.
Neither research or treatment.

No one need to be a rocket scientistc to realize that Every time retrovirus word come to light, they freak out, they turn their head to the other side or make the imposible to disproves

Retroviruses copy your DNA, transform each of your cells in a potter house, when your DNA change your methyliation, change the way your body process and blend the vitamin, minerals, the way it utilize them, i think this is clearly explain why CFS have so many changes in receptors of vitamin D, B12... and may others, why so many alergies.. etc, if your body is not porssesing and using properly this esential vitamin and minerals your enzems, your bodys antivirals your nk cells cytotoxic dont work properly, allowing pathogens enter the body and replicate uncheck.

This explain why supplements, antivirals, retrovirals, antibiotics get people better.

Retrovirals like insetres and tenafovir are the only two to be effective against xmrv or any related retrovirus.
The retroviral and antiviral effect may explain why people recover on them.
But you probably need to clean infections to help
Them work better.
Just think you have diferent viruses or intrcelullar bacteteria , them out of the sudden your immune system kicks in, the inflamation that this can cause is huge, plus some of this infections and viruses may be in your organs and central nervous system, especilaly if you have been ill for so long.
 
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Knockknock

Senior Member
Messages
212
Looks like this is a taboo topic? Nobody else, except @Countrygirl replied to this. I do not understand why this is considered a secret or kind of occult subject. If one has tried this treatment and worked why not to share with the others? Who is afraid of taliking about this and why? What should be hidden under carpet? To protect who?
!!! LOVE IT!!! I dont understand why neither!!!!!!
 

Knockknock

Senior Member
Messages
212
That broken thing is immunity.
I think that CFS and HIV resembles each other like two drops of water. What is different in CFS from HIV or vice-versa?
!!!!! MY RESPECT 4U SORIN!!!!!
IMMUNITY IMMUNITY IMMUNITY
Everything else is just Co infections that predict symtoms & severity of the illness.
 

Knockknock

Senior Member
Messages
212
That broken thing is immunity.
I think that CFS and HIV resembles each other like two drops of water. What is different in CFS from HIV or vice-versa?
The diference is that HIV alone, like hhv6 alone, like EBV alone, like CMV alone, like coxackie alone, like mycoplasma alone!!!
!!!! DONT CAUSE ANY DISEASE, NO HARM, THEY ARE JUST VIRUSES WITH MILD TO NO SYMPTOMS, ACTUALLY MANY PROPLE DONT EVEN FEEL ANYTHING!!!!
But if you have no immunity the all this viruses CAUSE ILLNESS.
Hiv cause AIDS, hhv6 cause CFS and MS like illness, certein species of Mycoplasmas can cause ALS..guillain barre..bartonells sprirochete can csuse LYME.

& if you dont have any of his Co infections, you can develope rare cancers since your NK cells in. Charge are not working properly.
Dont kill infected cancer cells.
 

Knockknock

Senior Member
Messages
212
Rose49 said "from Ron: We are testing for ALL viruses, bacteria, funguses and parasites. We are even testing for organisms that have never been seen before by doing elaborate sequence comparisons. First we eliminate the human DNA in the sample. Then we compare sequences of DNA (not human - those are gone) that we find in the individual to every sequence that's ever been done in the entire world. We do not require a perfect match, which means we can find organisms that have never been seen before because every organism is related to some organism that HAS been found. We are using very heavy computational analysis to do this."
--------------------------------------------------------------------------------------------------------------------------
Did Dr.Ron try to find new viruses? such as new RNA virus.
This sound very interesting, this is whi???
Ron Davis?????
 

Knockknock

Senior Member
Messages
212
Good article however I don't like that he threw out the term herx reaction as antivirals do not kill off viruses and only stop them from reproducing which is why it takes so long to see results. I think the herx reaction in these cases is down to the fact that you are ingesting some pretty strong chemicals.
Maybe the medicine itself dont kill the virus, but allow some to some degree the immune system to do it.
The herx reaction could be do to that
 
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Knockknock

Senior Member
Messages
212
No, english is not my native language, I wanted to say that every doctor has a different opinion on the same issue, so especially in a such mega sensitive topic as CFS is not unusual to see a lot of contradictory opinions! Actually you can see this from the fact that almost every top CFS doctor has his own theory about CFS cause: one says is EBV/CMV, other says is enterovirus, another that is Lyme, other that is gut, another that is retrovirus, and so on so forth...
Let just make sense and forget what people say.
Does cmv cause disease up on some one with healthy immune system?????nooo most people dont even realize when the got it, if not 80-90% of the population would of have ME.
Thesame happen with EBV, HHV6 and posibly HIV.
This are oportunist viruses they only cause seriius harm or disease when tte individual is immunosupressed
Any questions i may answer????
 

Knockknock

Senior Member
Messages
212
The evidence at least for Fibromyalgia is that FM amplifies painful sensations by affecting the way your brain processes pain signals and not a neutral immune condition. My neurologist says the same thing but being a neurologist, he may be looking at that part of the elephant. I need to look up any citations I've collected. Like me/ crs it can be precipitated by a virus but it's more frequently started by some type of physical injury or chronic illness such as arthritis.

I not aware that antivirals help with neurological disorders but I could be mistaken about that as well as the above.
Hi , Antivirals may not help with neurological desorders directly, assuming that FM doesnt come from a viral or Retroviral etiology.
But FM&CfS is the result of collateral damage,
The immune system is the origen, most people with Fb&cfs have changes in their Rnase L antivarial pathways, have Nk cells disfuntional, both diseases like many oher neuo-autoimmune diseaes have been associated with pathogen? Especialy with viruses(something most people ignore is that most of this viruses have strong afinity for the central and peripheral nervous system, most of them are neurotropic, is this viruses are shading from were they normally stay latent like HSv1-2 and Vsz, in root or triganglia, if they are shading slowly replicating infecting other parts of the peripheral and central nervous system as ( Dr Pridgen suggest) this may expain why the defused pain signaling and other symtoms, remember FM is not just about Pain, that is just the hall mark, it has many other disfuntions and deficiencies.
In my opinion from thousands of hrs reading researching putting this puzzle together, We all have an adquired immune deficiency(a retrovirus ) is changing our Dna, causing this blood dusntions and deficiencies that we see on FB, CFS, this RT it change our antiviral path ways alowing this viruses to cause neuro disease.
If you hsv1-2 vsz, you develope FB, if you have other viral infections you develope a more agressive FB as we see ther is diference y severity of FB abd CFS as well.
As i mentioned before Fm is not just a Neurological disorder, thats how Gov and Medical stablishment are trying to make it see, to shitf it away from an immune or infectious disease or even the overlaping with CFS and other conditions preventing association that can lead to think is from thesame etiology.
But in fact FB is far more complex than just neurological and overlap with Cfs.

.
 
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Knockknock

Senior Member
Messages
212
Hi Sorin,

It's true that some people may have been better with ARVs (and it didn't work on some) but it doesn't mean that these people have had a HIV like virus. From what I read, ME/CFS is not immunodeficiency virus. You don't die because the immune system is weak when you have ME/CFS, actually I even read that you don't die earlier.

Hip said on PR that ARVs have a big spectrum of action, so they also act on herpes viruses. A lot of people have improved with antivirals. Was it because antivirals target retrovirus? I don't think so, rather than because it targets herpes and remodulate the immune system.

Is an retrovirus implicated in ME/CFS? I don't know but be sure that Ron Davis is doing the maximum to discover whatever is implicated.

Rose49 said "from Ron: We are testing for ALL viruses, bacteria, funguses and parasites. We are even testing for organisms that have never been seen before by doing elaborate sequence comparisons. First we eliminate the human DNA in the sample. Then we compare sequences of DNA (not human - those are gone) that we find in the individual to every sequence that's ever been done in the entire world. We do not require a perfect match, which means we can find organisms that have never been seen before because every organism is related to some organism that HAS been found. We are using very heavy computational analysis to do this."

Maybe following his research and read some threads about it would make you feel better.
Theodore,
The theorie that me/ cfs is not immunodeficiency is a meto!!
We do have immunodeficiency( how do you defiene immunodeficiency?)
If having your NK cells impared with low funtion and low cytotoxin to punch thru and kill virues and cancers is not immunodeficiency immunosupression?? Them
I dont know what immunisuoresion is.
NK cells are te vital part of your immune system that provide immunity is the main first line of defense.
People have the wrong idea that immunosupresion its just haveing low cd4 white blood cells
 

Knockknock

Senior Member
Messages
212
wow. wow. wow. you have such high values. i would guess 100% positive these infections are active.

many CFS specialists have noticed that even just high IgG can mean active infection but regular doctors never agree with this. Montoya for example, will treat with antivirals in presence of high IgG
Becouse they have realized this viruses shade and replicate in a diferent way in people with Cfs.
Probably thru the peripheral and central nervous system do to threir neurotropic nature.
No so much like a regular high viral infection in people with healthy immune system that have a stronger respond from nk cells and antibodies.
This test are design for healthy people that get sick.
Not for immunosupressed people like us.
 
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Knockknock

Senior Member
Messages
212
I used tenofovir for several months and felt improvement from it but wasnt fully convinced what was helping so stopped it for several months and cfsme worsened. Currently have been on tenofovir for 9 months and im feeling better for it for sure.

On dr lerners score i was hovering around 6 out of 10, now im 8 or 9 out of 10. Im open to cfsme being a retrovirus but also open to the fact that arvs can strongly modulate the immune system as stated in the article i posted above.

Why it works would be interesting to know but really i dont care how it works, it just does. Waiting on research to prove how something works is just wasting our time as individuals and im willing to take the risks involved. I will say i think the risks of this treatment are low as tenofovir is taken by many people as a prophylactic treatment for hiv. Regular blood work to check general health is important as well as supplements to help protect the liver and kidneys like NAC can help lower risks.

Thats my experience so take it for what it is.
But ofcourse its a retrovirus Sr, Im open and conivenced that its, after thouthands of hrs reading, researching, putting this puzle together, comparing to other disrases, im 100% this is a Retrovirus.
Most likely the Retrovirus that cause Hiv to progress to AIDS to, look if this retrivurus can make hhv-6 EBV etc deplete you Cd4 to levels like and HIV/AIDS person, why it woulndt haopen thesame with Hiv??
This may explain why there is many HIV none progressive only carriers &why Hiv+can have a normal healthy life.
How frequen are you taking Tenafovir??
What are the side effects if you dont mind me asking???
 

Knockknock

Senior Member
Messages
212
Hi, I'm from Shanghai, China. I suffer from CFS (like-HIV). Here we call negative AIDS (yinzhibing). In China there are a lot of patients, and was suppressed, many people eat antiviral drugs to ease and stabilize. Hope that through this forum to get in touch with international friends
Probably your country have no interest in missleading and covering anything up, maybe they really care about their sick people getting back to help. Despite the large population and the control population by limiting the amount of new born and not killing the later and getting them sick, maybe they big pharmaceutical companies dont profit as much as the ones here in the western world.
if you dont mind sharing with us the dose that you use?
How beneficial is been for you??
Has it help you???
 

Knockknock

Senior Member
Messages
212
First month or so it was daily then changed to 5 days a week. It helps cost wise and hopefully any potential side effects while still working.
How are you doing on it??
Im convinced 100% there is a retrovirus behind this so i want to start in it.
Do you really see improvements? About side effects?
 
Messages
28
How are you doing on it??
Im convinced 100% there is a retrovirus behind this so i want to start in it.
Do you really see improvements? About side effects?
Hey knockknock

I am from switzerland and i am in the same situation as you...would it be possible to write you an email? I have some question and your answer would be very helpful..also regarding ebv....thanks a lot
 

Knockknock

Senior Member
Messages
212
Hey knockknock

I am from switzerland and i am in the same situation as you...would it be possible to write you an email? I have some question and your answer would be very helpful..also regarding ebv....thanks a lot
Hi Chugi,
Interesting you are new to the forum.
Yes ask me ill be more than happy to answere,
Maybe my answer could be helpfull to others.
You can also message me directly out of the thread
Ill be more than happy to answer your questions.
 
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