The ME/CFS and FM recovery stories that have been popping up more and more lately are triggering hope – and questions.
In this blog Dan Neuffer asks some fundamental questions regarding “recovery”. What constitutes a true recovery? Do people with with ME/CFS/FM really recover, and when they do, does it matter how it occurred? Do all these people really have ME/CFS/FM?
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Hello everyone,
I would like to tell you my tory one more time.
I got out (almost completely) of really bad Fibro…I was at the lowest.. with seeing a 30 doctors telling me I was depressed.
Couldnt brush my teeth, could not move, was screeming from pain.. had my period every 10 days… couldn’t sleep while exhausted.. all those pins and needles en strange nerve issues…
I really tought i wa broken.. and no doctor did a thing for me.
Teitelbaum wa the first who gace me hope… and the idea of a virus just made sense.
I was sur a herpes virus was at the root of this. Then a biologist told me my IGG for zoster were sky high (more than double of the average result after infection), wich was not normall for someone that contracted this at 4 year old.
Essential oils (look at the mint family on pub med ncbi sites) that are affective in killing herpesvirus whas the first big step in healing for me. I was taking them internally, and gave myself massage with it daily, 2 times a day…and noticed differences every month.
That’s how i stopped medication for pain. This sounds silly… like essential oils can cure you. Dont underestimate the power of certain plants. Look it op for yourself: peppermint, oregano, Thym, Sage, Melissa,… all have virucidal activities, on one of the viral partical stage.
Liposomal vitamin C helped me enormously… herx in the beginning, could not tolerate a lot.. and after two months Could increase until 2 000mg of liposomal daily.
MSM, was the same story…helped a huge amount, even though I had to do this very slowly.
Olive leaf is also the same story…. but after A mont you need to take a break and restart a month later;…. but keep doing it! Don’t drop after one box…this is not something tht heals overnight…
Glutahtione (immunocal) also same story…(S acetyl glutathion is also very good).
Those where the things that helped me kill a huge amount of virus particles. It was hard sometimes, but definitly worth while.
Next to that, I also did a lot of cleaning and detox, but this was just support for health in general.
NT factor is something is think everyons could benefit from. Make sure to add a good multivitamn wit carnitine, ALA, and taurine and Eskimo.
The primary thing is repair mitchondria damage…and make sure to get oxygen to the cells again… (MSM helpes for that) so that your immune system can stop the virus from activating…
I turned to a complete sugar free paleo diet.. and that helped me get their faster. I mean that…i felt a big difference. But I only did it after a year.
but the abvious thing that helped me was taking valacicovir in March…after 3 weeks only, my IGG titers drop to half the amount…and my pins and needles (300 a day) went back tot 50 a day..Today… I have 5 a day.
I want to share my story.
I now know my fibro was reactivation of herpes zoster.(without skin eruption).
But Lyme, and other infection guess could reactivate in nerves too.
Today, it makes so much sense…Every symptom was just totally equal to those with small fiber neuropathy and herpes zoster reactivation.
If you dont have lyme, I think fibros should check there herpes virus titers… and if too high…(and though some docters say it doesn’t mean anything, it is not true!!) treat for that…
I think for CFS it might be harder somtetimes… Because HHV6 and CMV and EBV could be more linked with CFS I suppose, because a bit less pain. And not a lot of antivirals work for that. Even Though Valtrex is good for EBV.
On that Im sure Pridgen, teitelbaum, and shapiro are right…
For a lot of us, it is a herpesvirus reactivating…
And Yes, I wish someone could have told me that 2 years ago… but you can get a cure! Even though…everybode can face it…and probably, people who have had it, more easily than others…
Sandrine
Thanks so much for sharing your experience and congratulations on your recovery or very near recovery. I really encourage to put it down one more time! 🙂 – here – http://www.cortjohnson.org/forums/recovery-stories/ so we can have all these stories in one place. The format should make it easier for you to put your story down. Who knew about essential oils (???). 🙂
Great article! This is something I’ve wondered about.
The other question we need to ask is: how many of the people who have recovered actually have the relapsing-remitting type of these disorders, in which case they will likely experience a relapse someday?
Agreed!
There is only one disease being ME and not subgroups. People have it at varying levels…Recovery is very possible to different degrees from any level of the illness..cure not being possible or highly unlikely unless your a teenager.
But how do we know that recovered people had ME in the first place?
Sandrine,
Thanks so much for this. As Cort says, I would love to see it in more detail in the recovery section.
It’s very interesting to me because I developed shingles (Herpes Zoster) at 26. I was so fit and healthy at the time the doctor suggested I also take an AIDS test, as she said shingles was so rare in a healthy person in their twenties and in her mind there must be a reason for it
Although that was 20 years ago and my real fibro didn’t kick in until the birth of my first child 6 years ago, when I start to look back (and I think most of us have this) I remember little things – signs that things haven’t been right ever since then.
A few months ago I started reading Stephen Buhner’s HEALING LYME. All but one of my Lyme tests have come back negative, but I wondered if his theory ( very approximately and I’m sorry if I’m butchering it – using herbs as antibiotics/anti-bacterials to kill strains of Lyme that are hiding in the body, under biofilms or elsewhere, and that can’t be treated with western medicine because the side-effects are too hideous.) could be applicable to other viruses hiding in the body. (as well as the Herpes Zoster i also had a really bad does of strep about 7 years ago.)
I took his herbs for a month – and with hindsight stupidly I decided to go for gold and also took a whole bunch of other things: the Metagenics Candibactin AR + BR that had been shown in a study to kill candida better than xifaxan; a mushroom combination that a friend had sworn completely rebuilt his immune system AND various other things such as megadose vitamin c, ashwaganda at night and l-phenyalaline in the mornings just to name a few. My husband begged me to try one thing at a time, but I’d had a really bad month and I felt like I was losing my mind. No – I WAS losing my mind. I just bought the whole lot on Amazon. Lost my mind and wallet.
The problem is I felt much, much better by the end of the month. Better than I’ve felt in years. And of course there was no way I could continue to afford to continue the protocol I’d been on. (let alone manage it – Buhner’s alone calls for handfuls of capsules all through the day, and I’d been almost doubling it with my add-ons) But how to know which ones were helping? How to know if it was placebo? How to know if it was co-incidence?
I peaked about 6 weeks in, when most of the bottles were empty. Since then i’ve been stuck in a morning flare pattern, where the pain is so bad for the first 2 hours of the day that I can barely move, but then gets better and allows me to leave the house in the afternoon. I’m now going through the things I took one by one, month by month, trying to see if each one alone has any noticeable effect. So far nothing has. What i’m thinking of trying next month is JUST the Buhner basic herbs. (Japanese Knotweed, Eleuthero, Cats Claw and Andrographis – although it depends on how you interpret the book and the protocol) Each of these can be bought for around $13 on Amazon for a month’s supply which is do-able for me – and seeing if I notice a difference. I know on the Lyme boards there are people who swear by it.
I’ve had CFS since 1987. Believe me, I’ve never recovered. I’ve thrown everything at it but the kitchen sink and can’t say that any one thing made a huge difference. However, there was one time when my sister turned me on to a rife machine. After doing random frequency treatments for about a month I had two days where I actually felt cleared of CFS. I felt no symptom and was amazed. I attributed it to the rife machine therapy but was unable to repeat the results 🙁 . Lastly, I’m 51 and have gotten to the point where I can’t work full time as my sleep/brain/pain dysfunction keeps me on a roller coaster. So, I’m starting the disability process. I can only hope. If only there was a test for the over 3-year people. 🙁
A Rife machine of all things..you just never know and the results of any treatment it seems can be very transitory in some people.
Good luck with the disability process!