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Post by nick1989nc on Dec 7, 2018 3:34:18 GMT
Hi Nick, search for ‘chronicsorethroat Wordpress’ on google as well. That’s Hip’s other site regarding unknown virus rather than ME/CFS Yeah regarding HTLV, many had negative tests for it andres. Hey tsuneyasu. Yeah it’s pretty unfortunate that the only organised group has been in China where the government doesn’t give a f**k. I feel like if 58 people presented together in a western country it would be taken a bit more seriously. One thing I can’t wrap my head around - If this thing is spread as easily as some claim (by saliva etc) then it would be an epidemic by now. It’s been around 10years... Thanks @tired
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Post by In the beginning on Dec 9, 2018 6:39:58 GMT
Hey guys. All existing tests are seeking something that already exists. Aside from indications of enflammation. If this is in fact something that’s is undiscovered and unresearched then this community is more so a place for support. I don’t think this forum is about finding answers as much as it is about finding support and discussion. I know many have been dedicated. But as everyone has stated after all these years and no answers, we’ve reached a stalemate. So at least appreciate communities like this for what they do provide. I hope everybody is keeping their head up.
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Post by nick1989nc on Dec 11, 2018 1:46:53 GMT
Hey guys. All existing tests are seeking something that already exists. Aside from indications of enflammation. If this is in fact something that’s is undiscovered and unresearched then this community is more so a place for support. I don’t think this forum is about finding answers as much as it is about finding support and discussion. I know many have been dedicated. But as everyone has stated after all these years and no answers, we’ve reached a stalemate. So at least appreciate communities like this for what they do provide. I hope everybody is keeping their head up. This has been mentally and physically the worst.
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Post by Tired on Dec 11, 2018 8:14:07 GMT
Thanks Inthebeginning, hope you’re well.
How long have you had this, Nick?
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Post by nick1989nc on Dec 11, 2018 15:22:12 GMT
Thanks Inthebeginning, hope you’re well. How long have you had this, Nick? It’ll be a year for me this month. The earlier post didn’t lie when they said the first year is the worst, I say this due to the beating my skin has taken.
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Post by nick1989nc on Dec 11, 2018 16:20:23 GMT
Thanks Inthebeginning, hope you’re well. How long have you had this, Nick? @tired how have you handle this so many years.
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Post by FromHolland on Dec 11, 2018 21:58:27 GMT
Hi all,
I haven't posted in a very long time. My last post was on the old forum last year, so I feel I owe you guys an update on how I'm doing health wise.
*********Positive developments********* - Regained some weight, mainly around middle - Gum recession almost completely stopped - Skin flaking, dryness and other skin issues milder/ less intense - Intense nerve pains almost gone, remaining: burning pain in back and arms when lying on my back - Regained some of my energy - White tongue completely gone, deep fissure also gone, lightly visible now - Diarrhoea/ loose stools completely stopped - Regrowth eyelashes in some areas - Peeling lips 90% recovered
*********Negative developments********* - Most worrisome, muscle loss and muscle weakness from head to toe, which causes other side effects/ health problems, e.g., swallowing problems, neck weakness, etc. - Thinning skin, especially in extremities - Dizziness and balance/ coordination problems - Sleeplessness - Bleeding mucous membranes in mouth when eating (luke)warm food - Fungus toenails continue spreading
*********Recurring complaints********* - Lump in throat/ feeling of tightness in throat - Chest pain - Sore throat - Cracking/ popping joints - Abdominal pain, but less severe compared to last year
First year (2017) was by far the worst phase. Although I started this year also very badly with a Coxsackie virus that affected my heart, I feel better now with the end of 2018 approaching. I am not searching for answers as I did last year but trying to get my life back on track for as much as possible. Not sure what exactly caused the positive changes... I believe the human body has great natural healing ability... other than that, I didn't really change anything...
I hope I can regain some muscle strength and mass and all the other complaints I believe could go away too with right combination of healthy lifestyle and patience/endurance.
Cheers, FromHolland
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Post by Tired on Dec 12, 2018 0:33:52 GMT
Thanks FromHolland. It’s always so helpful to have people update their status. Glad you have some positive improvements there. I think I’m on the same level in terms of just trying to be healthy with diet etc and manage my health. It’s hard to give up drinking though ...
Nick I am only about 8 months actually
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Post by ashyami86343 on Dec 21, 2018 5:03:38 GMT
Hi, anybody is getting double chin ? fat under the Jaw ? seems i am getting it.
Any seniors have solution to it ?
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Post by Guest1 on Dec 21, 2018 7:49:43 GMT
I remembered that in the other forum people said they found infection with nontuberculous mycobacteria . Is it truth? Does anybody remembers?
I just wanted to know because I’m doing some notes for my own personal use.
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Post by ashyami86343 on Dec 27, 2018 8:34:15 GMT
Happy New year Guys ! Hoping 2019 will get some diagnosis & solution.
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Post by Misc on Jan 2, 2019 13:06:48 GMT
Hi there
Admin from old forum checking in. Well done for continuing the discussion, though looks like little progress has been made, not unsurprisingly. A few of us from the Aperiomics group are continuing our chats but have also made zero inroads.
In terms of my personal situation:
1) The main improvements were taking flagyl for an unrelated health problem. It made me feel horrendous and I had terrible side effects but it greatly helped my stomach issues. I also felt mentally better than I had in years right after taking it. Interesting studies regarding gut bacteria and depression. Anyway have kept most of the gains since stopping and am working on my gut health with probiotics and apple cider vinegar too. Many others report promising improvements with flagyl but don't expect it to be easy! Just gutted I didn't try this drug earlier. 2) I am pretty sure this is a mycobacterium. Have had major improvements with azithromycin, doxy and flagyl, however symptoms come back after a while. Also, this disease by far most closely mimics lyme, pseudonomas and other stealth bacteria such as bartonella. The fact it responds to certain antibiotics aimed at these bacteria is no coincidence. 3) Am now taking high doses of allicin. Given we don't know what this is, this is one supplement PROVEN to work against bacteria, parasites and viruses. Seems like a safe bet. It's the active ingredient in garlic. 4) In terms of other symptoms, joints still crack, fissure down centre of tongue, on and off stomach issues, red eye, blah blah. However life isn't too bad overall and many other symptoms have stablised such as skin condition and joints.
For those of you newly infected, just hold in there and try the drugs mentioned above, eat healthy, use proven supplements, exercise and don't spend too much time on here. That is the single worst thing you can do with your health...these forums are good to check in on now and again, but the anxiety will make you sicker.
Laters
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Post by Guest on Jan 3, 2019 5:51:44 GMT
Hello
Did someone improve their nails?
I have white patches and ridges
Any useful tip ?
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Post by Tired on Jan 4, 2019 12:31:58 GMT
Anyone use N-acetyl-l-cysteine (NAC) as a supplement?
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Post by Tired on Jan 8, 2019 3:30:50 GMT
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