Lens Therapy (Neurofeedback)

Xander

Member
Hi all, I'm new to the forum and to Chronic Fatigue Syndrome in general, having only been diagnosed within the last month, although I have suffered symptoms for the last two years. After reading this story http://www.cortjohnson.org/blog/2015/05/20/adrenal-brain-exhaustion-dardens-fibromyalgia-chronic-fatigue-syndrome-story/ my interest in Lens Therapy was piqued.

I can definitely sympathize with Darden, as I'm sure many of you can, on the whole "wired but tired" feeling, and would love to be able to actually relax sometimes. It has been noted several times by different endocrinologists that I have visited in this long slog towards diagnosis that I have low morning cortisol, (which they of course brush off because it isn't low enough for Addison's), and having recently returned from a 9 day stay in the hospital I can note that my temperature was never 98.4, in fact it was almost always a degree below it.

Darden talks about how Lens Therapy allowed her to rid her brain of maladaptive stress patterns, which allowed her hormones to rebalance themselves. This was after 35 years. I'm thinking that if I can get help not even two years into my illness that it would be of great help.

Sorry for the long winded post, but what I was really wondering was if any of you had tried this therapy, and if so, what kind of results you had. I have searched for several hours to try and find other testimonials from sufferers of Cfs/ME, but I haven't been able to find anything.
 

Who Me?

Well-Known Member
Hi @Xander Many if us have screwed up adrenals. I take licorice solid extract and B5 although I can't say it's helping.

I have never heard of this and never heard of anyone else doing it. Maybe that's why you can't find anyone else talking about it.

My question to you is, what labs did they use to diagnose you? I know I got sick after a virus and my labs bear out that I have them and other things.

Adrenals, although important, is just part of the picture. Are the adrenals shot and making you sick or are you sick and therefore your adrenals are messed up?

You are smart to attack things now. You don't have to do one thing at a time. That's why I asked what they used to diagnose you.

Hope this helps a bit.
 

Xander

Member
Thank you for your response. I was diagnosed based on symptoms alone. Almost a year ago now I visited an autonomic specialist where it was noted that I had severe autonomic dysfunction. After a small fiber nerve biopsy came back I was diagnosed with an "idiopathic autonomic neuropathy", which basically means that I have a small fiber neuropathy and I have autonomic problems; Pots, sweat problems, etc.

Since this type of neuropathy is most often seen in diabetes, followed by various autoimmune disorders, it was I be put on Ivig, which I have been receiving every three weeks since June of 2015. Other than that I have received no other treatment and have kind of been attacking things on my own, such as cleaning up my diet.

Several months ago I realized that my exercise intolerance was nothing like what others with my condition described. I realized that I suffered from severe Pem, and after talking to my doctor about this, who I think always thought that I just didn't exercise because I was lazy, he asked me if I had heard of Chronic Fatigue Syndrome.

So technically I haven't been diagnosed by any tests, and I'm relatively sure that viruses weren't the cause of my illness, as my first symptoms hit randomly one night, amd I was never the same again. Within several months I went from playing basketball at a very high level, to being housebound, and always suffering from a wired but tired feeling.

Sorry if this answer is confusing, I suffer from some pretty severe brain fog too. If you have any suggestions of who too see or what tests to get they would be greatly appreciated, especially if they could be paid for by my dad's insurance.

The reason I am able to receive Ivig is that I am seen at Walter Reed, the largest military hospital, so we don't have to go through insurance. To be honest I don't really know if it helps, but my doctors seem to be insistent on keeping me on it, and I definitely don't think it is hurting.
 

Xander

Member
Yeah, you e convinced me to steer clear of Lens therapy, at least for now. I think there are a lot of areas I would rather explore first.
 

Xander

Member
Thanks, it seems that a lot of people think this disease is caused by a virus, but I didn't have any kind of cold or anything for about six months leading up to my onset of symptoms. I was practically a model of perfect health, both physically and psychologically. I will look at the roadmap though, thank you for including it.

What tests exactly did you receive that showed viral activation and confirmed your diagnosis of CFS/ME?
 

Edie

Active Member
Yeah, you e convinced me to steer clear of Lens therapy, at least for now. I think there are a lot of areas I would rather explore first.
This is for XANDER! Have you ever considered that you may have WILSON'S SYNDROME, a thyroid problem? Your body temperature is way too low. I have FM and got enormous energy back when my ND. treated me with T3 to bring my temperature up to normal. If I remember correctly, there are 2 books on the subject. WILSON'S SYNDROME AND WILSON'S SYNDROME DOCTOR'S MANUAL. I found the Doctor's Manual to be the best and it has the exact protocol for using T3. You may have to see an ND. or Holistic/Functional MD. for help with this. Believe me, this treatment got me out of bed and functional again.
 

Who Me?

Well-Known Member
@Xander. Not everyone's from a virus. I remember exactly what happened to me. I got a virus and never recovered

I've been sick for quite awhile. In 96 when I was diagnosed I had low Nk cell function. I really can't remember what else they tested but the virus put together with all my other symptoms and that was it. And this was one of the leading places at the time that treated stuff like this. They wanted me to get gamma globulin but it was scarce because of desert storm. I don't even remember if they knew how important antivirals were back then. I never got much treatment.

The last few years I have tested positive IgM for CMV and HHV6. I also was positive IgM for mycoplasma. Previously EBV. I also have a messed up immune system.

@IrisRV also has viruses. @Strike me lucky links his to shingles. @Remy used antivirals.
 

IrisRV

Well-Known Member
Same here. Daughter and I got a very sudden onset flu-like illness and never recovered. We tested positive for active EBV, HHV6, HSV-1, coxsackii, parvo B19, C. pneumoniae and I dunno what else. We also have multiple immune abnormalities including low NK cell function and low CD8+ cell numbers. Antivirals and antibiotics have helped a lot.

Whether viruses are the cause of ME/CFS, I couldn't say. They seem to be a trigger, at least, for a lot of people. They also seem to be causing a lot of the symptoms in many people. We don't know what the cause is right now. The cause might be immune dysfunction which then leads to active infections with pathogens most people's immune systems can control. But then, what caused the immune dysfunction? A pathogen? A toxic exposure? A genetic abnormality? We simply don't have enough evidence to have confidence in any hypothesis right now. We need the research. Big time. Now.

Regardless of whether viruses are causal, they are a big problem for many patients and need to be treated.

@Xander, your severe autonomic dysfunction could be causing most of your ME/CFS-like symptoms. As someone else pointed out, thyroid and adrenal problems could cause many of them as well.

PEM (aka PENE) is not exercise intolerance, even in it's most severe form. It can occur along with exercise intolerance, however.
To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
While your symptoms could certainly be ME/CFS, they could also be other things. I would never accept being slapped with a CFS diagnosis until everything else has been investigated and eliminated. Too many doctors use CFS as a lazy diagnosis. They write CFS in your record and then they feel they don't have to test further and generally don't want to treat you because "there's no treatment for CFS". It lets them off the hook for helping you. A non-ME specialist giving you a CFS diagnosis is just a way to slam the door on you. You do NOT want a CFS diagnosis if there's any way around it. At the moment CFS is a generally a dead end diagnosis unless you can see one of the top ME specialists.

Have you been treated for your severe autonomic dysfunction? Have all your thyroid parameters been checked, not just TSH?

I second @Who Me?'s suggestion that you start down the testing in the Roadmap. It would be wonderful if you found something treatable instead of being stuck with "there's no treatment, go away" CFS.

Are you being seen at Walter Reed because you're a vet? If so, has Gulf War Illness been considered as a possibility for you?
 

Who Me?

Well-Known Member
While your symptoms could certainly be ME/CFS, they could also be other things. I would never accept being slapped with aCFS diagnosis until everything else has been investigated and eliminated.
Totally agree with @IrisRV especially of the docs you're seeing are not ME/CFS savvy. You diagnose ME/CFS by ruling out everything else and to do that you need labs. Otherwise you're just throwing stuff against the wall hoping something will stick.

One thing many of us have learned is you have to be your own advocate and ask for things. I tried for a year to get a doc to run labs for mycoplasma. I knew something was off. I was high IgM almost 300 above the top range. Treatment of the chronic infection made a big difference.

Educating yourself is the most powerful thing you can do. And there are plenty of really smart people who can help, even with interpretation of labs.
 

Issie

Well-Known Member
Check into POTS. Symptoms match.

Also my nephew and niece are doing Neuro feedback. They have CFS, POTS, MCAS and EDS. It is making a world of difference for them. My nephew started out not wanting anyone to know he was doing it. Now he is calling everyone he knows telling them to do it.

I'm looking into it myself.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I know somebody who's done very well with neurofeedback as well. I don't know if its Lens or not. Anything that reduces the upregulation of the sympathetic nervous system is worth a try in my book...There's definitely healing in that direction if you can turn that sucker down..
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Check into POTS. Symptoms match.

Also my nephew and niece are doing Neuro feedback. They have CFS, POTS, MCAS and EDS. It is making a world of difference for them. My nephew started out not wanting anyone to know he was doing it. Now he is calling everyone he knows telling them to do it.

I'm looking into it myself.

Issie
That's good news. If you try it good luck with it and let know how it turns out.
 

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