What treatments have CURED people?

[doug]

Imunovir or Inoprinosine is a combination of inosine and DiMethylAminoIsoPropanol (DMAIP).
I took Inosine in combination with DMAE (DiMethylAminoEthanol) with good effects, averaging at most $0.70 USD/day or about $21.00/month. (Source Naturals and Ultimate Nutrition Inosine 1000 - 2000 mg/day, and Source Naturals DMAE 351-702 mg/day. The Inosine is about $20 for (120) 500mg tablets, and DMAE is about $20 for (200) 351 mg tablets) DMAIP and DMAE are both amino alcohols, similar but not identical. Propanol is propyl alcohol, or propan-1-ol for CH3CH2CH2OH, propan-2-ol for CH3CH(OH)CH3. Ethanol is C2H5OH.
Both Inosine and DMAE are available without a prescription in the USA and on the internet. Some CFS patients cannot tolerate DMAE until other processes work, so if you are willing to experiment, start slow.
I took Inosine first at two different times for 2-3 months each with a slight improved feeling, then added DMAE in later and took both for about a year. After adding in DMAE I noticed a big increase health.

 

[heapsreal]

hi doug,
did u divide these doses throughout the day, eg 1000mg inosine with 300mg dmae in the morning and then repeat at night.
I once had a 4 week period on just inosine where all my symptoms vanished, even sleeping without meds, but like i said it only lasted 4 weeks, i havent been able to repeat this since, although inosine does help my joints with that grating type feeling like sand in your joints.

cheers!!!!!

 

[alex3619]

Hi

Scratch most long term patients and youll see a story of how they tried something or other, felt fantastic for days or weeks, then crashed. It is a common story - and I have several of them to tell. I suspect we can correct momentary imbalances and feel great, or suppress certain pathways, etc, but this doesn't stop the disease process. If it is a virus, it likes us sick and I suspect it goes amok when we are feeling better, trying to suppress our immune systems again.

I have also tried CoQ10. I only ever found one brand that worked, but it is no longer available after being bought out (an Aussie product, developed by the CSIRO, owned by New Zealanders, but bought out by an asian consortium, so presumably making vitamins etc for the asian market).

Since we are demonstrably deficient in CoQ10, and it is critical for energy production and oxidative stress, there is no doubt we need it. Finding a brand that is proven to work is another issue. What brands have been used in clinical trials and shown to work?

Bye
Alex

 

[doug]

Hi heapsreal-

I started out with 500 mg Inosine/351 mg DMAE am and later repeated Inosine in pm before meals. For stretches took 1000 mg Inosine & 351 DMAE am and pm. I would order 1-2 bottles of Inosine, take for 2-3 months, then take a break when I nran out and waited for another order to ship. I can always get DMAE off the shelf at Whole Foods or the Vitamin Shoppe but had to order Inosine off the internet.

For this thread, my illness and recovery history:

Got sick 11 years ago after two extensive mold exposures. After about 7 years illness and misdiagnosis from several Dr's, finally got a diagnosis of Cpn and EBV from Dr. Powell. I was already taking NAC, fish oil, MSM. He started me out building up with vitamins A-E, K, B12 shots, then I took combination antobiotics for the CPn. Later he added digestive ezymes, Iodine, antiviral Valtrex for EBV, and simplified methylation cycle support supplements, infra red sauna, and T3 for hypothyroidism. I have taken herbals Cat's claw, astragalus, lauricidin, Yerba Mate, Milk thistle: and chisholm lab transfer factor for CPN and EBV, inosine, dmae, piracetam, DHEA and 7-Keto. All these things helped incrementally. I would try to introduce one supplement or med at a time and notice effects, discontinue and notice effects without, and continue or discontinue from this feedback. I took NADH, CoQ10, L-Carnitine for energy and stopped when I started to feel too wired. I stopped all presciption meds except T3 when they gave me IBS and I felt better without them.
About 1 1/2 years ago the fog lifted, and I felt as if I crawled out of a deep black hole. I hadn't realized I was depressed until I felt happy again. I recovered enough to start Bikram Yoga classes. Adding DMAE to the Inosine occured about the same time, but likely there was a cumulative effect. Last summer I also tested positive for lead and mercury and had 6 silver-mercury- almagam fillings replaced, took OSR heavy metal and other chelators, then EDTA and biofilm removal supplements, fiber and antibiotics.

I think I'm cured or at least managing my symptoms very well. I am able to work long hours, drink alchohol, exercise without any relapse or rebound exhaustion. Right now I'm feeling better than I have since before I was sick. I'm still taking supplements to undo the damage. I'm taking T3, Tyrosine and a herbal for hypothyroidism, DHEA and trying Pregnenolone; Curcumin and D3 to clear out plaques (maybe this will also help with sleep apnea), and Bikram Yoga 3-4 times a week. I get arthritic symptoms in my knee if I don't go to Yoga often enough, and I also lost 10 lbs and 2 inches in the waist. I haven't had any relapse in symptoms in at least a year, but have extremely elevated CPn IGg antibody levels (1:1024). These are supposed to come down as this infection is cleared, so still seeing the Dr. occasionally for CPn and Thyroid tests. I haven't been tested for XMRV, so I don't know if I'm cured, or even if this is what I had.
I hope this helps someone and gives hope that you can get better.

Doug

 

[ramakentesh]

Several I have spoken to on TCM preparations, two in licorice alone for six months claim complete remission.

 

[xrunner]

I've taken licorice (powder as tea) for a couple of years. It's a good herb, it helped my stomach immensely. I think Dr Chia uses it in his anti-viral herbal complex and some seem to get good results. I did not overall. A couple of months ago I stopped taking it. I had realised that it was affecting my brain possibly due to its estrogenic effects as I noticed other aspects of this. For men, taking it long-term may not be a good idea. You also need to keep an eye on your potassium as it can lower it.

 

[mellster]

Wow your story, test results (high EBV and moderately elevated CPN) and treatments (except for Valtrex but I take natural anti-micorbial supplements) sound almost identical to mine except for that mine was much shorter and diagnosed very soon so that I was sick for 1.5 years with FM then had a CFS crash and have gradually improved on most treatments listed by you plus others (KMAF, 2LEBV, AHCC, corcdyceps, graviola... etc.) over the last 12 months to the point where I can workout again and the FM/cytokine pain is more dominant than the CFS but has lessened as well. Also healing the gut from IBS that made me lose 40lbs before reversing and is now only very mild has helped enormously. I do believe treatment and supplementation must continue and that this is a complex condition that requires a combination of treatments tailored to the individual patient, even if they ever find a single causative agent this will always need a multi-pronged approach IMO.

Hi heapsreal-

I started out with 500 mg Inosine/351 mg DMAE am and later repeated Inosine in pm before meals. For stretches took 1000 mg Inosine & 351 DMAE am and pm. I would order 1-2 bottles of Inosine, take for 2-3 months, then take a break when I nran out and waited for another order to ship. I can always get DMAE off the shelf at Whole Foods or the Vitamin Shoppe but had to order Inosine off the internet.

For this thread, my illness and recovery history:

Got sick 11 years ago after two extensive mold exposures. After about 7 years illness and misdiagnosis from several Dr's, finally got a diagnosis of Cpn and EBV from Dr. Powell. I was already taking NAC, fish oil, MSM. He started me out building up with vitamins A-E, K, B12 shots, then I took combination antobiotics for the CPn. Later he added digestive ezymes, Iodine, antiviral Valtrex for EBV, and simplified methylation cycle support supplements, infra red sauna, and T3 for hypothyroidism. I have taken herbals Cat's claw, astragalus, lauricidin, Yerba Mate, Milk thistle: and chisholm lab transfer factor for CPN and EBV, inosine, dmae, piracetam, DHEA and 7-Keto. All these things helped incrementally. I would try to introduce one supplement or med at a time and notice effects, discontinue and notice effects without, and continue or discontinue from this feedback. I took NADH, CoQ10, L-Carnitine for energy and stopped when I started to feel too wired. I stopped all presciption meds except T3 when they gave me IBS and I felt better without them.
About 1 1/2 years ago the fog lifted, and I felt as if I crawled out of a deep black hole. I hadn't realized I was depressed until I felt happy again. I recovered enough to start Bikram Yoga classes. Adding DMAE to the Inosine occured about the same time, but likely there was a cumulative effect. Last summer I also tested positive for lead and mercury and had 6 silver-mercury- almagam fillings replaced, took OSR heavy metal and other chelators, then EDTA and biofilm removal supplements, fiber and antibiotics.

I think I'm cured or at least managing my symptoms very well. I am able to work long hours, drink alchohol, exercise without any relapse or rebound exhaustion. Right now I'm feeling better than I have since before I was sick. I'm still taking supplements to undo the damage. I'm taking T3, Tyrosine and a herbal for hypothyroidism, DHEA and trying Pregnenolone; Curcumin and D3 to clear out plaques (maybe this will also help with sleep apnea), and Bikram Yoga 3-4 times a week. I get arthritic symptoms in my knee if I don't go to Yoga often enough, and I also lost 10 lbs and 2 inches in the waist. I haven't had any relapse in symptoms in at least a year, but have extremely elevated CPn IGg antibody levels (1:1024). These are supposed to come down as this infection is cleared, so still seeing the Dr. occasionally for CPn and Thyroid tests. I haven't been tested for XMRV, so I don't know if I'm cured, or even if this is what I had.
I hope this helps someone and gives hope that you can get better.

Doug

 

[heapsreal]

Hi heapsreal-

I started out with 500 mg Inosine/351 mg DMAE am and later repeated Inosine in pm before meals. For stretches took 1000 mg Inosine & 351 DMAE am and pm. I would order 1-2 bottles of Inosine, take for 2-3 months, then take a break when I nran out and waited for another order to ship. I can always get DMAE off the shelf at Whole Foods or the Vitamin Shoppe but had to order Inosine off the internet.

For this thread, my illness and recovery history:

Got sick 11 years ago after two extensive mold exposures. After about 7 years illness and misdiagnosis from several Dr's, finally got a diagnosis of Cpn and EBV from Dr. Powell. I was already taking NAC, fish oil, MSM. He started me out building up with vitamins A-E, K, B12 shots, then I took combination antobiotics for the CPn. Later he added digestive ezymes, Iodine, antiviral Valtrex for EBV, and simplified methylation cycle support supplements, infra red sauna, and T3 for hypothyroidism. I have taken herbals Cat's claw, astragalus, lauricidin, Yerba Mate, Milk thistle: and chisholm lab transfer factor for CPN and EBV, inosine, dmae, piracetam, DHEA and 7-Keto. All these things helped incrementally. I would try to introduce one supplement or med at a time and notice effects, discontinue and notice effects without, and continue or discontinue from this feedback. I took NADH, CoQ10, L-Carnitine for energy and stopped when I started to feel too wired. I stopped all presciption meds except T3 when they gave me IBS and I felt better without them.
About 1 1/2 years ago the fog lifted, and I felt as if I crawled out of a deep black hole. I hadn't realized I was depressed until I felt happy again. I recovered enough to start Bikram Yoga classes. Adding DMAE to the Inosine occured about the same time, but likely there was a cumulative effect. Last summer I also tested positive for lead and mercury and had 6 silver-mercury- almagam fillings replaced, took OSR heavy metal and other chelators, then EDTA and biofilm removal supplements, fiber and antibiotics.

I think I'm cured or at least managing my symptoms very well. I am able to work long hours, drink alchohol, exercise without any relapse or rebound exhaustion. Right now I'm feeling better than I have since before I was sick. I'm still taking supplements to undo the damage. I'm taking T3, Tyrosine and a herbal for hypothyroidism, DHEA and trying Pregnenolone; Curcumin and D3 to clear out plaques (maybe this will also help with sleep apnea), and Bikram Yoga 3-4 times a week. I get arthritic symptoms in my knee if I don't go to Yoga often enough, and I also lost 10 lbs and 2 inches in the waist. I haven't had any relapse in symptoms in at least a year, but have extremely elevated CPn IGg antibody levels (1:1024). These are supposed to come down as this infection is cleared, so still seeing the Dr. occasionally for CPn and Thyroid tests. I haven't been tested for XMRV, so I don't know if I'm cured, or even if this is what I had.
I hope this helps someone and gives hope that you can get better.

Doug

I know u posted this awhile ago doug, but i must have missed it. Your supplement and treatments used are very similar to my regime, plus im still working on a few other things. I feel its 2 steps forward and one step back at the moment. Im just trying to treat the abnormalities i have found like infections and hormonal defiencies etc. I think it can take awhile to get it all sorted.

Its good to see you doing so well. How have you been going lately, 12 months without a relapse is very promising.

cheers!!!

 

[ramakentesh]

Licorice just has so many effects that if it does help its impossible to determine why in some ways. It supressed NF-kappa induced inflammation, increases sodium handling while also decreasing sodium cardiac channels, decreases activation of endothelial nitric oxide, acts as a mild SSRI and these are all before one considers its immuno stimulation and documents steroid-based immuno and inflammatory supressive effects.

 

[heapsreal]

i didnt have a good experience with licorice, i felt like it hyped me up too much and worsened sleep. I think things that increase cortisol can do this especially if dhea is low as dhea normally helps counteract any negative aspects of cortisol. Pregnenolone increases cortisol in me with little effect on dhea, doses of preg that non cfsers use hyped me up in a negative way but i have used very small doses of preg <5mg that has helped energy some but i cant take it daily has it feels like it builds up in my system. I have been slowly increasing my dhea levels and i feel it is helping some plus i seem to tolerate pregnenolone abit better. Maybe i should try licorice again now that my dhea has come up???

cheers!!!

 

[ramakentesh]

It could also hype you up if your nitric oxide pathways (nNOS and eNOS) are abnormal. I find it very calming, and gives me an instant boost of BP.

 

[heapsreal]

we are also so different i guess, thats the most common themes amongst cfsers when using meds and supps.

 

[ramakentesh]

Very true. makes it hard.

 

[SaraM]

i didnt have a good experience with licorice, i felt like it hyped me up too much and worsened sleep. I think things that increase cortisol can do this especially if dhea is low as dhea normally helps counteract any negative aspects of cortisol. Pregnenolone increases cortisol in me with little effect on dhea, doses of preg that non cfsers use hyped me up in a negative way but i have used very small doses of preg <5mg that has helped energy some but i cant take it daily has it feels like it builds up in my system. I have been slowly increasing my dhea levels and i feel it is helping some plus i seem to tolerate pregnenolone abit better. Maybe i should try licorice again now that my dhea has come up???

cheers!!!

I have been on 25 mg Dhea for a few days for my very low level of serum Dhea, and it has been really helping with my muscle pain, energy and body temperature. Preg and cortisol did not do much. I wish my doc could be as helpful as you are.Thanks, heap !

 

[knackers323]

Hi heapsreal-

I started out with 500 mg Inosine/351 mg DMAE am and later repeated Inosine in pm before meals. For stretches took 1000 mg Inosine & 351 DMAE am and pm. I would order 1-2 bottles of Inosine, take for 2-3 months, then take a break when I nran out and waited for another order to ship. I can always get DMAE off the shelf at Whole Foods or the Vitamin Shoppe but had to order Inosine off the internet.

For this thread, my illness and recovery history:

Got sick 11 years ago after two extensive mold exposures. After about 7 years illness and misdiagnosis from several Dr's, finally got a diagnosis of Cpn and EBV from Dr. Powell. I was already taking NAC, fish oil, MSM. He started me out building up with vitamins A-E, K, B12 shots, then I took combination antobiotics for the CPn. Later he added digestive ezymes, Iodine, antiviral Valtrex for EBV, and simplified methylation cycle support supplements, infra red sauna, and T3 for hypothyroidism. I have taken herbals Cat's claw, astragalus, lauricidin, Yerba Mate, Milk thistle: and chisholm lab transfer factor for CPN and EBV, inosine, dmae, piracetam, DHEA and 7-Keto. All these things helped incrementally. I would try to introduce one supplement or med at a time and notice effects, discontinue and notice effects without, and continue or discontinue from this feedback. I took NADH, CoQ10, L-Carnitine for energy and stopped when I started to feel too wired. I stopped all presciption meds except T3 when they gave me IBS and I felt better without them.
About 1 1/2 years ago the fog lifted, and I felt as if I crawled out of a deep black hole. I hadn't realized I was depressed until I felt happy again. I recovered enough to start Bikram Yoga classes. Adding DMAE to the Inosine occured about the same time, but likely there was a cumulative effect. Last summer I also tested positive for lead and mercury and had 6 silver-mercury- almagam fillings replaced, took OSR heavy metal and other chelators, then EDTA and biofilm removal supplements, fiber and antibiotics.

I think I'm cured or at least managing my symptoms very well. I am able to work long hours, drink alchohol, exercise without any relapse or rebound exhaustion. Right now I'm feeling better than I have since before I was sick. I'm still taking supplements to undo the damage. I'm taking T3, Tyrosine and a herbal for hypothyroidism, DHEA and trying Pregnenolone; Curcumin and D3 to clear out plaques (maybe this will also help with sleep apnea), and Bikram Yoga 3-4 times a week. I get arthritic symptoms in my knee if I don't go to Yoga often enough, and I also lost 10 lbs and 2 inches in the waist. I haven't had any relapse in symptoms in at least a year, but have extremely elevated CPn IGg antibody levels (1:1024). These are supposed to come down as this infection is cleared, so still seeing the Dr. occasionally for CPn and Thyroid tests. I haven't been tested for XMRV, so I don't know if I'm cured, or even if this is what I had.
I hope this helps someone and gives hope that you can get better.

Doug

Hi Doug

How did Drs miss your cpn diagnosis for seven years with that antibody level?

Also what did you think of the lauricidin?

What did you find the best biofilm busters were?

Hope your still doing well

 

[Little Bluestem]

@doug

 

[JPV]

This is going to sound strange, but I do much better on less sleep. For example, I work 4 days a week. I find if I get no more than 6 or 7 hours of sleep on those days and then go to work I function much better. I then sleep more on the weekend. I really believe that people with CFS do not repair the way others do at night. Further, it might be possible that if we have a virus it replicates while we are sleeping. As long as I do not go over 6 or 7 hours of sleep each night during the week, I can somewhat function like a normal human being during the week.

I wonder if you might be sleeping deeper, if you get less sleep, because it makes you more more tired.

 

[knackers323]

I have found the same thing as @Mya Symons has anyone else?