a quick hi , how are we all going, me first

heapsreal

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Hi, just thought it would be good for all the regulars and the newbys to post an update on how we are all doing and brief update om our current tratments etc, just a thought on keeping replies to others down, maybe reply by personal message or start a new thread etc.

here go's, im doing well of late, although going through back problems of late for which i will be going through some procedure to fix it, facet joint arthritis for which i will be getting an ablation (burning of the nerve to the facet joint causing the pain and hopefully be pain free and can ditch the pain meds.

My initial trial of cycloferon which enhances immune function/natural killer cell function went well for the 4-5 weeks i was on it, with a lowering of antivirals doasges at the same time with continual improvement. Post cycloferon had a mini 'crash' so maybe proof it was helping my cfs symptoms, an increase in av dosage helped compensate, which has also helped me realise i need to be on higher dosages of antivirals for them to be effective.

I have remained on a low dose of famvir, 250mg once a day and added 1000mg of valtrex twice a day which helped shorten the 'crash' and improved general condition. I have a reliable source of cheap famvir for which i will increase my famvir dose and temporarily drop the valtrex and maybe add it back if needed, i think i have good improvement on av's but just need to keep the dosage high and have multiple dosages throughout the day as they have short half lives which require multiple dosages to keep the viruses down. Waiting on my order of injectable cycloferon which i hope adds to improving my condition.

my horrible insomnia seems to be under control of late, touch wood. I have multiple strong sleep meds that i rotate between which is helping me to avoid drug tolerence and get good consistent sleep.

Tests show and my response to treatment i think strongly indicates i have some sort of chronic immunodeficiency that cause cmv reactivation and probably ebv which seems to be a mystery has it shows up on tests IgG when it wants too. Im not sure if i will end up being xmrv has these treatments that have been effective for me i dont think would be if i had xmrv, but when testing comes to australia, i will definately go for it.

Im interested to see how everyone else is going, so would be greatful if replies are kept out as these can put threads off track. I think thid will give alot of people info on things to try.

cheers!!!
 

heapsreal

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COMMON!!,

ive had 23 lookers and no one wants to share their current state of affairs, this is where we can see what each other are upto and help each other out. I would like to hear from others on antivirals and retro's and know how they are working for each other as well as any natural treatments/protocols for something else i could add to my regime.

cheers!!!
 

leaves

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hey there :)
not much to tell here... i have not been doing well the last 5 months, but doing a bit better now, but still not back to my old level. Not sure how to handle the extra energy; if I do too much I will crash, but if I dont do enough I also get worse.

I have stopped ldn because I think it made me worse. Klimas wanted me to start on a lower dose but I dont dare, too much to lose.
I am on oxymatrine still, not sure if it does anything, I am now on white tiger but after I finished that I will go on Chia's formula. I will be trying a new antiviral (nitazoxanide) next week.
still the mind fog and stiff neck, there obviously is some kind of brain infection, but dont know what to do about it.

I also have a new symptom; sore muscles.
 
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I guess I'm at about a 4 this week, but, since I had two weeks last month of being at 4-5 then 2 weeks of being around 2-3, I'm waiting for the other shoe to drop. It is severely hampering my ability to enjoy the limited amount of activity I'm doing. I don't know if I'm getting away with it or not, suspect not. But what I am trying is oxygen therapy. Got a used concentrator, using it for just under an hour each day. I think it is helping with the shortness of breath and helping me to get by on less revolting salt. Sure is nice to have a cup of salted water every time you'd rather have a cup of tea. I'm not on any prescription or taking any supplements. Just salt and oxygen.

My 'brave face' hologram appears to be flickering so it's time for sleep...
 

*GG*

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I guess I'm at about a 4 this week, but, since I had two weeks last month of being at 4-5 then 2 weeks of being around 2-3, I'm waiting for the other shoe to drop. It is severely hampering my ability to enjoy the limited amount of activity I'm doing. I don't know if I'm getting away with it or not, suspect not. But what I am trying is oxygen therapy. Got a used concentrator, using it for just under an hour each day. I think it is helping with the shortness of breath and helping me to get by on less revolting salt. Sure is nice to have a cup of salted water every time you'd rather have a cup of tea. I'm not on any prescription or taking any supplements. Just salt and oxygen.

My 'brave face' hologram appears to be flickering so it's time for sleep...
So do you have a mask for the Oxygen or ? I want to look into getting a chamber for Oxygen!

GG
 

Jenny

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I think this is a really good idea, heaps. Hopefully we’ll be able to do this in a more structured way when Cort’s system is in operation.

So here’s my contribution:

Background
29 years ME, 8 years FM. Both relapsing and remitting. Worst relapse ever started 13 months ago - mostly bed bound since then.

Current treatments
Sertraline – been on this 4 months. Worked up very very slowly to 100mg over 12 weeks. Started at 12.5mg
B Right - 1
Niacinamide – 500 mg – only just started this
Tramadol – 50 or 100 mg
Nattokinase – 2000 Fu
Methyl B12 sublingual – 2000 mcg
Doxycycline – 300 mg
Azithromycin – 250 mg every other day pulsed at two week intervals
Plaquenil – 100 mg
Vit D3 – 2000iu
Vit C slow release – 500 mg
Vit E gamma – 800iu
Glutamine – 5 gm
Culturelle – 1
Kefir – every other day
Mg – 400 mg
Se – 200 mcg
Zn – 50 mg
Omega 3 – 2000 mg
Milk thistle – 350 mg
Plant sterols – 1600 mg, for high cholesterol
Diazepam – 4 mg at night if can’t get to sleep

Things I’ve stopped and may start again
AHCC – did a few months on this, may have helped
Pycnogenol – ditto
Beta glucan

Diet
Very low dairy – cows’ milk kefir only
No sugar
Lots of salt water

Other
Perrin exercises
Some Gupta exercises occasionally

Things that didn’t help recently
Enhansa
D-ribose
Co Q10
LDN
Burbur
Simplified Yasko

The treatment that seems to have helped the most recently is Sertraline. After 2 months I had improvement in appetite, constipation, nausea, pain, anxiety, night sweats, and the awful ‘waves’ of deep malaise I got several times a day which ended with sweating.

Culturelle seems to have helped with constipation.

More generally, just over the last 3 weeks I’ve had some better days, where I’m up and about most of the day with less pain and weakness. In fact my daughter took me on a weekend spa break last weekend which involved a long car journey and I managed it fine. This improvement has coincided with starting pulsed azithromycin again. I have to stop after a few days of it though as I feel very much worse, but then improve again over the next week.

I may start AllicinMax shortly.
 
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Hi GG, so far, I'm just sitting by the oxygen outlet, making sure I breathe as much of it as possible. Looked into getting the nose things but this seems to be working somewhat, so I'm just stickin gwith it for now. In Canada it seems you can't buy an oxygen mask without some kind of special permission, so I gave up on that, too. I just sit by it 20 minutes at a time, 3 times a day, and cup my hand to get the oxygen toward my face. It might not be as effective, but it's the easiest for me right now. I haven't tried an oxygen chamber!
 
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Hi L'engle, sorry Heaps for replying when that's not the intention of this thread but I haven't got the brain power to post "how I'm doing" at the moment - hopefully I will be a bit better tomorrow. I do want to know how L'engle is getting on with the oxygen as I recently read something about Cheney and oxygen not helping us.
 
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Hi, you all.
I've tested positive for EBV, CMV and HHV6. I am currently taking the antivirals Valtrex and Valcyte, which I have been on for 12 weeks. I have not yet showed improvement, but am very hopeful, as it seems most folks get worse on these medications before they improve.
I am also trying to minimize crashes by using a heart rate monitor to get a better idea of which activities are causing the most exertion.
I am taking a bizillion supplements for kidney, liver, immune system, and general health.
Low dose Amitryptyline was recommended to me for my insomnia, which I have found very effective. I take 10mg every 3 or 4 days.
I walk at 1.0mph or slower on my treadmill for about 20 minutes 3 or 4 days a week to help with circulation.
I do not yet know my XMRV status.
 

Sallysblooms

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I just went for my extensive blood tests I take every six months. I can't wait to see how things are going. I am taking great supplements for my body and immune system to lower my Epstein Barr. So far everything is working great. We are working on my Vit. D level as well as other things.