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Treatments overview

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Started this for others as reference point and for myself so I don't forget about anything ;) Dosages are probably best left out and to be worked out by the individual patient. I expect this list to be only 60% of my current treatments (will add as I remember them) and subject to changes :) cheers

Immune-System:

Low dose naltrexone
Graviola
Andrographis
Inosine/Inovir
Gotu Kola
Cordyceps
CVAC (cyclic variable altitude conditioning)
Vitamin A
Vitamin C
Vitamin D
Ashvagndha
Glutathione

waiting on cycloferon

Gut:

Oxymatrine
Mesalamine
Andrographis
Probiotics + Cytoflora
L-Glutamine
Licorice
Rotational diet (trying at least) & gluten avoidance

Methylation/Energy:

Vitamin B12 (mehtylcobalmin, hydroxycobalamin and AD B12)
Vitamin B complex
Sam-e
Methylfolate
CVAC
Vitamin B15
D-Ribose
L-Carnitine
L-Arginine
Glutathione
Taurine
Testosterone
T3
Iodine

Antiviral:

Graviola
Andrographis
Larrea-Rx
Oxymatrine
Artemisine
Virunex
Lemon balm

Anti-Inflammatory:

Fishoil & Vitamin E
LDN
Guaifenesin
Aspirin/Actaminophen (as needed)

Neuro:

Vitamin B12 & B Complex
General Neurological Health Formula
Phosphatidyl Serine Complex
Alpha Lipoic Acid

Other:

Vitamin K
Nattokinase
Co Q 12
Protandin
NT Faktor
Respitrol
 

heapsreal

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Started this for others as reference point and for myself so I don't forget about anything ;) Dosages are probably best left out and to be worked out by the individual patient. I expect this list to be only 60% of my current treatments (will add as I remember them) and subject to changes :) cheers

Immune-System:

Low dose naltrexone
Graviola
Andrographis
Inosine/Inovir
Gotu Kola
Cordyceps
CVAC (cyclic variable altitude conditioning)
Vitamin A
Vitamin C
Vitamin D
Ashvagndha
Glutathione

waiting on cycloferon

Gut:

Oxymatrine
Mesalamine
Andrographis
Probiotics + Cytoflora
L-Glutamine
Licorice
Rotational diet (trying at least) & gluten avoidance

Methylation/Energy:

Vitamin B12 (mehtylcobalmin, hydroxycobalamin and AD B12)
Vitamin B complex
Sam-e
Methylfolate
CVAC
Vitamin B15
D-Ribose
L-Carnitine
L-Arginine
Glutathione
Taurine
Testosterone
T3
Iodine

Antiviral:

Graviola
Andrographis
Larrea-Rx
Oxymatrine
Artemisine
Virunex
Lemon balm

Anti-Inflammatory:

Fishoil & Vitamin E
LDN
Guaifenesin
Aspirin/Actaminophen (as needed)

Neuro:

Vitamin B12 & B Complex
General Neurological Health Formula
Phosphatidyl Serine Complex
Alpha Lipoic Acid

Other:

Vitamin K
Nattokinase
Co Q 12
Protandin
NT Faktor
Respitrol
Looks good, although hard to put somethings in certain groups as they may cover a few of them. Lipoic acid is one that could go into a few groups as it recycles other antioxidants and also increase glutathione. Do u find glutathione supps helping, i know there conflicting info in reguards to absorbing it and they say NAC is better at increase glutathione, its one of those supps on my list of going to try.

Another good cheap supp for your immune system is astragalus, which is said to increase certain immune functions like white blood cells etc.

Mell, when do u take phosphatidyle serine? I have read a few things about using it in the morning to increase energy but find it good at night to lower cortisol which i use with ashwaganda/withania.

Mell hate to ask this as many names its hard to tell if male or female but if male do u use anything to help control estrogen/E2 while on testosterone as its know to aromatase to estrogen in some and drugs like arimidex can help control E2 and help increase free testosterone.

Looks interesting, how long have you been on them and how much has it helped? I might post my own treatment overview, good topic.

cheers!!!
 
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Hey heap, thx for the feedback. Yeah, the categories need refinement and it is often hard to tell which supp has which effect, but if you don't have problems with adverse reactions and unless there is a clear contraindication of 2 supps taken together I think the more the better as this is a really complex illness affecting the whole body. I am male and found testosterone gel boost my energy (better than thyroid hormones). I take Phosphatidyl Serine usually in the morning or both morning and evening, I don't feel much effect from it but I trust it helps lower cortisol, so taking it at night mostly might be a good tip. I take glutathione (liposomal) only occasionally but it does help with energy for me for sure. I am looking forward to nebulizing it soon to improve lung function. I actually occasionally take NAC too and just got NAD into the mix. I also just started the LDN and am so far impressed but it might not be the LDN but I plan to take it on a long term basis ;) Overall I have been on most supplements for 2 (some 3) months now and it has helped me a lot with managing the work day and then taking care of family before getting too exhausted. It also reduced my overall symptoms quite a bit so that deals without exercise/much stress/exertion feel closer to normal (still experience flu-like symptoms and occasional left sided fibro pain). I have not evaluated any changes in exercise intolerance and PEM threshold yet as I have taken too big steps earlier on and want to avoid any relapses if possible, but I noticed that the light exercise I currently do (and have not increased yet) feels a bit easier and recovery is a bit faster. For reference, I currently can exercise safely for ~30 minutes at an avg of 110-120 bpm (5-10 minutes even at 130-140 bpm+) 2 times a week (plus 2 x per week CVAC on these days I never exercise), which seems a lot and is certainly a big improvement since my last crash, but it's far from my kickboxing heydays. Will def looking into adding astralagus, Hope this helps - cheers.
 

heapsreal

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Thats good. LDN sounds promising. im going to look into it but was worried that being on tramadol would ffect it but read that using LDN at night away from when i use tramadol should be ok and possible improve tramadol pain relief effects. Im also thing of trying a very low dose of pregenenolone again as it had good energy and anti-inflammatory effetcs but i think i was dosing to high as i was using in the 50mg dose transdermally which i think can make it build up in the system, so thinking of using a capsule/tablet of say 5mg as this will be broken down in a few hourswith no build up in the system. I will throw up my own treatment overview and show how i categorise my supps.

cheers!!!
 

WillowJ

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I take Phosphatidyl Serine one at each meal (well, I'm supposed to, but I forget :innocent1: ) and two at bedtime, per my MD/ND. We did one of those tests to check levels throughout the day, and mine were higher at night.
 
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Happy Labor Day - here is an updated list:

Immune-System:

Low dose naltrexone
Graviola
Andrographis
Inosine/Inovir
Gotu Kola
Cordyceps
CVAC (cyclic variable altitude conditioning)
Vitamin A
Vitamin C
Vitamin D
Ashvagandha
Glutathione
Flax hull lignans
Brewers Yeast
Astralagus
Mushrooms (Maitake etc.)
Zinc

waiting on cycloferon

Gut:

Oxymatrine
Mesalamine
Andrographis
Probiotics + Cytoflora
L-Glutamine
Licorice
Bromelain
Quercetin
Rotational diet (trying at least) & gluten avoidance

Methylation/Energy:

Vitamin B12 (methylcobalamin, hydroxycobalamin and AD B12)
Vitamin B complex
Sam-e
Methylfolate
CVAC
Vitamin B15
D-Ribose
L-Carnitine
L-Arginine
Glutathione
Taurine
Testosterone
T3
Iodine
Cellfood
P5P (B6)
NAC
NAD

Antiviral:

Graviola
Andrographis
Larrea-Rx
Oxymatrine
Artemisine
Virunex
Lemon balm

Anti-Inflammatory:

Fishoil & Vitamin E
LDN
Guaifenesin
Aspirin/Actaminophen (as needed)
Mesalamine

Neuro:

Vitamin B12 & B Complex
General Neurological Health Formula
Phosphatidyl Serine Complex
Alpha Lipoic Acid

Sleep:

Melatonin
Valerian Root
Phosphatidyl Serine Complex
Guaifenesin
Saw Palmetto

Other:

Magnesium
Potassium
Vitamin K
Serrapeptase
Nattokinase
Co Q 12
Protandin
NT Faktor
Respitrol
SOD3
Creatine
 

WillowJ

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I take Phosphatidyl Serine one at each meal (well, I'm supposed to, but I forget :innocent1: ) and two at bedtime, per my MD/ND. We did one of those tests to check levels throughout the day, and mine were higher at night.
I guess mine is Phosphorylated Serine/Ethanolamine, but I think it's the same idea.

happy Labor day!
 
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thank you for sharing all your treatments mellster!!
are you taking all of them? did you start taking them one after another or all at the same time?
what kind of cfs do you have? do you have EBV, Hhv6, coksakie or echovirus? how long have you had it for?
how did iosine work for you? im thinking about trying it but i have read some stories of people that got a relapse from it. did you notice anything? how are you taking it? ive read that you should take it changing the amount of pills depending on the day.
and LDN... i really really want to try but its being so hard to find a doctor to prescribe it... where do you get it from? do you compound it yourself?
hehe... too many questions for you:)
Im taking acyclovir and just started oxymatrine. Dr Montoya tells me that i should only do one thing at a time, but i want to try more. ive waited so long im eager to find something that helps!
thankyou again for your post, its very helpful to see that people are getting better!
andrea
 

SaraM

Senior Member
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Hi Heapsreal, I am really interested in trying Arimidex for estrogen dominance. Do you know an online pharmacy that sells it?
 
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great list, it would be nice if you could specifiy even more since there are so many things on the list that i have never heard of, vitamin K for example, why do you take it? brewers yeast? I try to avoid yeast but barley remember why now.

i also take LDN ( love it, the only real medication that makes a difference for me..) i also take inosine, i have also read that you should alternate doses ( i take 2 pills one week and then 6 pills the other ,but for the life of me i can't remember where i got this information from so i can't go back to check...)

thank you!
 
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Hi atoska, I am still waiting on the cycloferon. Otherwise I try to take (and do) all of the mentioned treatments, but I often forget some so I prob take > 50% of what is mentioned every day and I don't have all the supps at work as well. I don't consider this exact science but I am trying to take everything mentioned at least every other day and the dosages vary by day and moreso by individual. The LDN I get from my specialty clinic's compound pharmacy at standard 4.5 mg dosage, but currently I re-compound and only take 3 mg once before bedtime. LDN should not be that hard to get, find another doctor then :) Wow, I did not know that you are actually a patient of Montoya (I participated in his current CFS/ME study but am not a patient) and am surprised he would not want to prescribe LDN, but he's the man and might have his reasons ;) I take inosine irregularly, usually before and after workouts or just once a day. I find it hard to believe getting a relapse from any of these treatments, at worst they simply don't work for you, I think relapses are mostly due to over exertion or co-infections and then there are side-effects which are often mistaken for relapses. I only had relapses when exercising too much so far, Hope this helps. cheers
 
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Hi mellster!
Thanks for your answer! it does help to read that other people are doing better, it makes you keep in mind that you cant give up hope :)
yes! im a patient of Dr Montoya :) I have been taking antivirals (acyclovir) for 6 months with no effects, and now im suppose to start with oxymatrine.
I also was part of the cfs study just a week ago! They told me they had already collected all the blood samples, so we now just have to wait for the results :) hope they help clear something out. the bad part is that we are only getting the results of the pathogens test. i would really like to get the results for the inmunological study too.
ive read that you are able to work and also do some exercise two times a week. thats so great! do you work 8 hours a day? how long have you been sick for? how were you feeling before you started all the supplements?
and the last question :) i want to start LDN, but I also have to start oxymatrine. do you think i could start both at the same time? did you start both at the same time?
thanks again for all your answers and your treatment post!
 
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Hi atoska, I take oxymatrine and LDN at the same time with no issues. I work full time yes as a programmer and can do moderate exercise a couple times a week (~30-45 mins) with enough rest in between. I cannot say for sure how much the supplements helped since I also started "aggressive" pacing after crashing repeatedly from overdoing which is a big factor for stabilizing as well, but I think overall they lifted me from 60% to 80% functional. Also I am more the FM subset type with chronic pain rather than complete exhaustion although I have experienced that as well a couple of times. I have not been able to significantly overcome PEM/PENE yet but since my exercise threshold is not that bad it's not the biggest issue right now. I think since it took 2 years for me to slide it will take at least as long to fully recover if possible. I also talked to the study coordinator and while it's exciting that they started testing, I would have preferred them coming out with a definitive timeline - I hope we will know the results within the next 2 months or so. Also, if possible I will try and get the full results, maybe you have to be persistent and they might give em to you :) cheers
 
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Hi again :)
And thank you again for answering all of my questions.
60% to 80% recovery is a long way! i would love that! i would come back to life and be happy for the rest of it if i could just stay on an 80% recovery:)
oh! it makes me happy to read that it is possible!
even though im more the fatigue kind of subset. my main symptom is fatigue, but my PEM is not too bad.
yes, im for sure going to be persistent and try to get my results. im going to talk to Dr Montoya at the end of next week and going to ask him if he thinks he could give me my results. he is going to have all the results in his hands, so i hope he wont have a problem with it. im also hoping he will use the results to treat me maybe in a different way.
still they told me it would take 6 months or more for me to get my results. maybe it takes less for yours because you had your blood drawn long time ago.
its always waiting and more waiting, you have to be so patient with this illness.. i hate patience! :)
please let me know when you get your results! cheers
 
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Thanks for the feedback - I upgraded myself today to 8.5 (85%) which I attribute mainly to the ongoing LDN treatment plus CVAC, methylation (esp. b12+d3 and liposomal/inhaled glutathione), Andrographis, Graviola and NAC+guaifenesin as the main players - but I still take all the other compounds mentioned, just less regularly. Boule de feu, regarding the Graviola, I ordered it form Now Foods and I think 1 capsule is 1g of soursoup (graviola). I take 1-2 capsules per day, and it has strong anti-microbial and immune modulating properties. If you google it you can find several studies by well-known hospitals citing its benefits. While there don't seem to be any quick fixes, I think it is possible to pull oneself out of this, but recovery is likely slow and might take as long as the period of getting/being sick or even longer. Lastly, I think exercise is a key element as well, it just has to be tailored to what the individual can do without crashing and increased extremely slowly with long recovery periods in between. cheers
 

perrier

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This is a fabulous thread. It is very interesting to know what folks take. Thanks Mellster. Also, would be interesting for folks to know who their physicians are. Some of us have been running around all over the place and haven't found either help or improvement. Wish more folks would indicated their protocols.

Were you, Mellster, ever completely flat on your back? I ask this because you say you are working full time. This is absolutely terrific and inspiring.

Cheers and thanks, Helene