• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

My story and progress with cfs recovery and treatments used.

Messages
24
Hi guy usual story in terms of CFS, came down one year ago after a virus or possible infection.
Then went on to be bedbound. I gave up on doctors as i studied all the material and designed my
own treatment program.

As follows:
1st step: using allicin to treat initial causes. http://www.allicin.co.uk/
This stuff gave me horrific herxheimer reactions but i carried on as its just made from garlic
and garlic cant do you any harm. It did the job other anti-biotics and i even tried
antivirals none compared to this stuff.

2nd step: diet modification to dr terry whals protocol http://www.terrywahls.com/
she is pioneering M.S recovery using just diet. Amazing lady.

3rd step: am just starting using ACE inhibitor lisinopril to stop my body producing
the nasty singals that tell my body that im ill and need to lay down all day:

and my secret weapon, an absolute must:
Non alcoholic beer, becks blue: http://www.medicalnewstoday.com/releases/38763.php
i drink at least 6 bottles a day now, its transforming that horrid feeling that seems
to penetrate my very consciousness, after a pack of those i felt more normal.

i am now self sufficient and able to gently exercise without feeling impending doom.
Im going on a date next week, im really excited
so much less scared of this illness when i have all the above.
 
Messages
24
i just got so excited i can cause pain to cfs i did a dance! its the only thing i hate and i want to damage the disease and ruin its day! good luck guys
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Hi guy usual story in terms of CFS, came down one year ago after a virus or possible infection.
Then went on to be bedbound. I gave up on doctors as i studied all the material and designed my
own treatment program.

As follows:
1st step: using allicin to treat initial causes. http://www.allicin.co.uk/
This stuff gave me horrific herxheimer reactions but i carried on as its just made from garlic
and garlic cant do you any harm. It did the job other anti-biotics and i even tried
antivirals none compared to this stuff.

2nd step: diet modification to dr terry whals protocol http://www.terrywahls.com/
she is pioneering M.S recovery using just diet. Amazing lady.

3rd step: am just starting using ACE inhibitor lisinopril to stop my body producing
the nasty singals that tell my body that im ill and need to lay down all day:

and my secret weapon, an absolute must:
Non alcoholic beer, becks blue: http://www.medicalnewstoday.com/releases/38763.php
i drink at least 6 bottles a day now, its transforming that horrid feeling that seems
to penetrate my very consciousness, after a pack of those i felt more normal.

i am now self sufficient and able to gently exercise without feeling impending doom.
Im going on a date next week, im really excited
so much less scared of this illness when i have all the above.


Hi Richard.

Welcome and glad you're doing better.

I was with you up to the non-alcoholic Becks. Yuk - low or no alcohol beers always taste to me like someone has stubbed their cigarette out in your tin.

I'll stick to brewer's yeast thanks.

But good luck all the same :)
 
Messages
24
hiya :) but real beer has such unwanted problems, i worry it can bring on a crash :(, try drinking
a pack of 6 becks blue, i promise you wont regret it. I worry that the byproducts of breaking down alcohol
put strain on the body.
 
Messages
24
i got told off on another forum for posting my story so i hope anybody understands that i posted it up just
incase it is of any use to anyone. I had such profound Neurological and body symptoms i am shocked
the other forum told me i had depression. I used to hold to to the side of my bed trying to get through
each 5 minutes!
 
Messages
24
hey guys: i was on one allicin max tablet a day and raised to two for 3 months, the die off period was very strong,
it was about the very limit of what i could handle.

Step 3 is a bit of a trial and i feel its helping: im using an ace inhibitor but others have suggested arb blockers
may be more useful. ACE inhibitors block the conversion of angiotensin I to angiotensin II, too much angiotensin ii
is not good for the body, and i suspect that people with cfs will have higher levels of the ratio.
i just take 10mg of lisinopril, but it does give you a bad cough!

angiotensin ii is a key component to making us feel ill, its makes the brain say we are ill, lay down, your tired,
its called sickness behaviour. I figured by reducing anything that tells my body im ill the more chance
i can be of breaking the cycle!
 
Messages
24
hiya, thats a problem with taking all my steps at once i have no idea which helped and which didnt!

i dont eat any sugar at all! i dont even each much fruit as sugar scares me!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi guy usual story in terms of CFS, came down one year ago after a virus or possible infection.

Welcome. Hi :) .. It may be what you did which has helped or it may just be you were going to recover from this illness anyway.

Recovery isnt uncommon within the first couple of years of this illness (in fact a doctor actually told me I would recover within 2 years due to that unfortunately in my case I didnt thou). ME/CFS like illness with recovery within 2 years used to be called "Post Viral Syndrome".

You are definately doing the right think thou by doing all you can early illness to try to recover from it.

Best luck.. may you make a full recovery.

Be aware if you do fully recover, you will always be susceptable in getting this illness back, I found out that the hard way. I had a full recovery from a severe bedbound state but ended up getting this illness again cause I caught a virus and as I'd been fully recovered, didnt rest and crashed back into this whole illness again.. never been able to recover again since.

i am now self sufficient and able to gently exercise without feeling impending doom.
Im going on a date next week, im really excited
so much less scared of this illness when i have all the above.

Take care with that exercise as it may prevent you from fully recovering if you are overdoing it at all (its easy to over do something very slightly and not be aware you have over done but it could be enough to prevent further improvement). If you are getting any negative after affects at all.. you are certainly over doing it.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
angiotensin ii is a key component to making us feel ill, its makes the brain say we are ill, lay down, your tired,
its called sickness behaviour. I figured by reducing anything that tells my body im ill the more chance
i can be of breaking the cycle!
What if your body is making angiotensin ii because you are ill and do need to lay down? This sound like it could be a 'beating the tired horse' type of treatment. I think it should be approached with caution.
 
Messages
24
Heapsreal: yes the non-alcoholic beer is so good im sure its just as usefull as a NSAI's but without
the stomach problems> I dont think i could drink real alcohol that would be really scary!

Taniaaust: I've heard quite a few people say i may have just been recovering anyway. its fairly possible!

Your advice is important, im always going to keep aware not to overpush myself,
and if i get any virus im just going to lay in bed for a week. im going to cut back on activity!

Little Bluestem: yes very true it might make me feel better then i am, so will be very careful!

Im glad i came on here, you have been very helpful already guys :)http://forums.phoenixrising.me/index.php?members/taniaaust1.859/
http://forums.phoenixrising.me/index.php?members/taniaaust1.859/
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I wouldn't rest for a week. Two or three days tops. I'm not saying you should run a marathon but keep
in mind that our bodies detox and heal via movement as well as rest. I'd been deconditioned and getting winded
easier after 2 days. Been there done that.

I'm not interested in any cfs studies because the very definition of cfs is a group
of symptoms. Cfs is a waste basket dx. There was an article posted here recently that demonstrated that perfectly.
I think beyond posted it.

You'll find other patients with other illnesses having similiar symptoms. They're trying to say pem is the hallmark
for cfs but dr peckerman explained that hypoperfusion due to orthostic intolerance (oi) can cause this. Google
Peckerman cfs.

Hypoperfusion via oi means our upper bodies have decreased blood flow so our organs
can't function properly. In that article he didn't mention we'd also have hyperperfusion in whatever area
the blood settles in. If you google hypo and hyper perfusion you'll see how our bodies deal with these
conditions. Of course there are a host of chemicals involved. Tc .. X
 
Messages
24
thanks chocoholic,

yes i agree that cfs is a term thats doctors use when they have no idea!

im going to read into your post as its quite detailed and i need to grasp what these terms are
and the outcome for our bodies in that respect.

should have been on here sooner to learn about people's experiences!