Recovery from CFS, CFIDS, ME

by The wizard Lawrence
(San Francisco, CA)

I got hit with CFS really strongly. I was a couple months (if that) from being institutionalized. I was able to go on to experience recovery from CFS...


I apologize in advance for the tedious reading. I have 3 documents:
1. Personal History detailing the start and events up until the time I started therapy;
2. Daily Notes - a dated regular journal about what I experienced, Ideas and conjectures, and solutions up until the present time;
3. Resource Links listed in the order I found them so you can follow my path and come up with your own research and conclusions.

Feel free to copy and pass them around. Send me questions for clarification if needed. If you try anything out, let me know what results you get.

So what does recovery from CFS look like for me?
I have been entirely symptom-free and taking no medications or supplements at all since July 8, 2014. I feel again just as I used to before this thing hit. I hope this helps get you there, too...

What do I mean by CFS recovery


The word "recovery" means: to get back to one's normal level of activity. However, there are two ways to do this -
- compensating for the damaging agent's activity enough to get back to a "normal" level of activity
- removing the damaging agent and repairing the damage done enough to get back to a "normal" level of activity (aka: cure)
I'm using the second connotation when talking about my recovery from CFS, not the first.

CFS / VICD Personal History:

non-Facebook

Facebook -
http://www.facebook.com/wizard.lawrence/timeline/story?ut=32&wstart=1325404800&wend=1328083199&hash=4346727664059&pagefilter=3&ustart=1

CFS / VICD Daily Notes:

non-Facebook

Daily notes begin as follows:
Tue, 07-03-12 Day one 6:36 pm: starting acyclovir 400 mg 3x daily for the next 33 days or so. Documentation seems to say that this may work

moderately well against hhv-6 and the rest, so we'll see if there are any effects with this. Thank you, Kandice.

Facebook -
http://www.facebook.com/wizard.lawrence/timeline/story?ut=32&wstart=1343804400&wend=1346482799&hash=4383559664836&pagefilter=3

CFS / VICD My Research Links:

non-Facebook

Facebook -
http://www.facebook.com/wizard.lawrence/timeline/story?ut=32&wstart=1341126000&wend=1343804399&hash=4363939574346&pagefilter=3&ustart=1
Thank you Katherine for replying on twitter and letting me share the news for my CFS recovery. I hope it helps other people too.
Good Luck!
TwL

Note from www.HealingCFSME.com

Dear Lawrence,
Thank you for sharing. Always great to hear about someone’s CFS recovery.
Your diaries remind me of occasions when I have tried to track my health!! I am sure that those with CFS/ME will relate to the ups and downs. So glad you have stayed up!

Disclaimer: Dear Visitor, I know how much you want to experience recovery from CFS if you have it. Just to state that the inclusion of this information in no way acts as an endorsement of Lawrence’s treatment for CFS. Always consult your medical practitioner for advice.
Lawrence is keen to give his own disclaimer - please see his comment below.

Katherine’s questions
Where these have been answered, I have inserted the answers.

Question: You say you got CFS strongly. Can you give the visitor’s some idea of what level you were at, so that they can compare their own situation?
On the third day of your diary you state: “walked 14 block lengths” was this typical of the level at which you started?


Walking 14 blocks would have been no big deal before I got hit. I've often walked downtown from my place (some 20 - 30 blocks) especially since the buses were un-reliable), shopped around for a couple hours, then walk back carrying my purchases. At the height of my difficulties, I couldn't carry a gallon of milk half a block from the corner store without stopping to rest.

My level of disability was quite severe: I could no longer do ANY math in my head, even simple addition (and I passed Calculus in college).
I lost the ability to read, compared to being able to read a novel in 2 days before.
Walking half a block was slow and difficult.
Lifting a 5 lb bag of sugar was difficult on my better days, and I couldn't carry it more than 50 ft.
It took 3 - 5 seconds to recognize that the car in front of me had put on the brakes. 10 seconds to figure out that the 4" cap wouldn't fit on the 1.5" bottle neck.

In order to get up for work, I had to roll myself (with difficulty) onto the floor and crawl up the side of the bed. I could not hold tools firmly, and even a couple half turns of a screwdriver into pine would cause muscle burn and leave my arm weak and useless.
If I were to sit for more than 10 minutes, I would need help standing up again.
Everything about my body was severely weakened and in pain.
I couldn't keep ANY muscles tense - and considering that sphincters are muscles... well, it gave me more reason to have a couple changes of clothes at work and follow Mom's advise to "go before you leave"...

Considering that I was unable to safely take care of myself, I was about two months away from needing to be in a nursing home.

How long did you have CFS before starting treatment?


The "flu-like" symptoms hit in November of 2006, accompanied by a severe and persistent deep cough. Therapy started July of 2012. The worst part of it, and the fasted downturn, was the last 3 years. In total, about 6 years.

As horrid as it was, is it the case that you did not have it severely in that you weren't housebound or bedbound.


No, I wasn't. While it was debilitating at it's height, I could still go to work as long as I was able to keep moving all day long (one of the odd things about it was that once I was able to start moving, I could keep moving. However, a stop during that time would be disastrous).


Did you have the typical CFS symptom of feeling worse after exercise?


You are right about the feeling worse after exercise. It would be fine for an hour or so but then totally demolish me.

Katherine: Summary of Lawrence's Treatment


Please see the comments below for more about the Lawrence's suggestions for healing CFS.
He summarizes it as an ENZYME TREATMENT based on the theory of a viral cause for CFS.

Lawrence was also prescribed anti viral medication, ACYCLOVIR, by the Doctor but wants to stress that this was a less significant element in his recovery from CFS.

tags: recovery from CFS, Chronic Fatigue Syndrome, healing, treatment of CFS,

Comments for Recovery from CFS, CFIDS, ME

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CFS viral cause theory
by: The wizard Lawrence

Question from Katherine:
Could you summarize what you believe to be CFS causes based on the treatment you undertook?


Summary of my theories on CFS Causes (by Lawrence)


(Part of my (Lawrence's) daily notes - see link above)

Many cases of CFS stem from a reactivated HHV-6 virus, and/or perhaps other viruses of that family

online fact: 98% or more of the American population has the virus(es), usually in dormant form, and from early childhood

online fact: Trauma to the body can reactivate the virus

online fact: Reactivation of the virus can start with a period of moderate or light flu symptoms

online fact: The viral elements do not travel thru the blood, instead they transfer through the cell walls to infect other cells

online fact: The viral elements attach to the mitochondria of the cells, sucking up a significant portion of their energy, thereby causing the infected organ to reduce its ability to do its jobs

Theory: Symptoms of the activated virus can mimic a large variety of diseases, though at close inspection the "disease" doesn't meet all specifications:
• - overall aching of joints (arthritis) but with no inflamation
• - strong headaches (migraines) with no apparent cause
• - inability to sleep (insomnia) despite being tired
• - inability to get rested, despite extreme fatigue
• - muscle burn (overwork) without a lot of activity
• - muscle weakness despite fitness of individual
• - weight gain, despite small food intake
• - brain fog - inabilty to form coherent thought trains
• - memory lapses - increasing difficulty remembering even simple things, like your romantic partner's name, or your pet's name, or where you just put your keys, or where you normally park your car when you get home… or worse, where is your home.
• - increasing difficulty doing even simple math, despite needing to use it all the time.
• - increasing difficulty reading more than one sentence at a time
• - longer reaction speeds to events such as brake lights ahead, or stop signs/signals.
• - longer and longer times to REALIZE things like what brake lights ahead MEAN
• - increasing difficulty spelling, despite previous accuracy levels
• - increasing inability to distinguish things like which cap goes on which jar, even if the size difference is enormous (dementia / Alzheimer's / old age)
The virus can reactivate in several ways:
• overall
• in a "bloom" - one, several, or all organs affected
• short term - the virus reactivates for a short time (weeks/months) then goes dormant again
The virus can pass the blood / brain barrier

Acyclovir can significantly reduce the reactivated viral symptoms

By affecting particular systems/organs, the virus can interfere with those systems/organs by draining the energy necessary for those systems/organs to function properly:
• Thyroid - leads to hypothyroidism
• Pancreas - leads to diabetes II and perhaps other types
• Brain - brain fog, ADD, dementia, Alzheimer’s, slowed cognation, inability to do math
• Pituitary
• Liver - hepatitis symptoms
• Adrenals - short-lived bursts of energy

Theory: The virus can also lead to a variety of cancers by reducing the body's natural ability to fight cancer cells that are regularly occurring in the body. As well, if a viral element is interrupted in it's re-writing of the
RNA/DNA, there's a possibility that since the termination code was removed the cell will simply
reproduce itself without end, instead of reproducing the virus without end

Theory: Enzymes of a specific type can damage the viral elements in the cells, including those in the central nervous system and beyond the blood/brain barrier

Theory: After the virus has been incapacitated, one's cholesterol count may go up quite high as system-wide apoptosis destroys the affected cells. The white blood cell count may also elevate somewhat

Theory: The modern medical communities, medical insurance agencies, and the government do not want to acknowledge this problem (that includes Pharmaceuticals).
Part of this problem is that modern (over the past 35 yrs) diagnoses have been derived primarily from blood tests and patient descriptions. Patients often don't use precise/complete descriptions, and blood tests won't show the virus. Even tests (that have to be specially ordered) that can detect the virus only show that there was, at some unspecified point, a reactivation - but not when or even if the virus was active at the time of the test.

observation: The body's vitamin D production is minimal or non-existant

tags: cfs causes, recovery from CFS, acyclovir, chronic fatigue syndrome, cure, personal experience  
CFS viral cause medication
by: The wizard Lawrence

Question from Katherine:
Have you now stopped taking the viral medication for CFS or do you continue?


I stopped taking any medication or supplements when I finished the second application of enzyme therapy, and that was July 8, 2014. Still no symptoms whatsoever to this day, Aug 26, 2014.

Note from Katherine T Owen:
Lawrence has been symptom free since the end June 2014.
I know that some people like to follow CFS treatments where health has been maintained for a year or more.
I am sure you join me though in being delighted for him :-) and keen that the recovery continues.
Symptom free is pretty amazing.

Previously, once I'd stopped taking the Acyclovir it would take 3-5 days before symptoms would return noticeably. Not so at this point.

In fact, the reason I had to do a second application of enzyme therapy was that after a week the first time, symptoms started showing up. I determined that I'd not gone long enough (10 days) in the first session. I took the second session to 14 days. I was also using a broader-spectrum enzyme supplement for the second session.

So far, so good

My goal in this is to be both symptom- and medication-free. If my present state continues for 6 months straight, I'll conclude that my CFS recovery has been successful.

Being 53 yrs old, I expect to take various supplements like
ZenPep (enzymes),
Multi-Enzyme,
Adrenal support,
Thyroid support;
and Acyclovir as a preventative if possible.

But only as normal health measures.

Are the enzymes which helped to heal your CFS readily available?


Enzymes of all sorts are available over the counter in health-focused stores. Multi-Enzyme can be gotten from a chain we have here called The Vitamin Shoppe (it's their own brand). ViraStop 2x can be found online - however, it's a bit pricey and they don't reveal what's in their "proprietary blend", so Multi-Enzyme seems to be a better choice for range of enzymes and price.

Unfortunately I've not been able to narrow down the specific enzymes that might do the most good, so getting a product with a large range seemed the best option.

In what other way did you try to heal CFS, if any?

Most of the advice out there I've given a try, including changing my eating habits that weren't bad to begin with (I don't eat like a typical American).
However, as good as they were, they turned out to be, at best, a way to "get thru the day".
Eventually, even these things tended to peter out.
Treatment for CFS disclaimer
by: The wizard Lawrence

Before I give my recommendations on how to treat this situation, I need to caveat:

1) I am NOT a doctor. I've no medical education. I'm a good reseacher and my experiments have been based on educated guessing.

2) My doctor works for Kaiser and though she was willing to put some faith in my suggestions, she can't (or isn't allowed to) back my claims.

3) Acyclovir is an anti-viral, not a virucide. Also, the effects it had on my symptoms can't be explained by my doctor... according to her, it wasn't supposed to do what it did.

4) I wasn't on any medication previous to this. If you are on medications, PLEASE check with your doctor about contra-indications. If you can safely get off of any meds you're currently taking, it might make the enzyme therapy more effective. However, don't just take your doctor's word for it if they poo-poo my ideas. I picked my doctor because she was practicing more than 35 years ago, and I think that made a difference. I've had no support from the medical community other than that.

5) My research was based on the assumption that my CFS was virally based - HHV-6, in fact. My guess proved to be right. However, that doesn't mean that all cases of CFS, ME, Fibromyalgia, etc are indeed virally based. My suspicion is that a majority are.

6) READ MY DOCUMENTS. Tedious as they are, they may have the information you need to make informed guesses for yourself. Follow the Research Links in order and see if my conclusions make sense for you. Read the Personal History and Daily Notes to see any similarities you may be experiencing.

7) Be SPECIFIC about your symptoms: for example, if all your joints hurt, don't assume (or let your doctor assume) that it's arthritis. I had that but no inflammation so arthritis was ruled out. Keep in mind that many diseases can actually be symptoms - CFS, ME, Alzheimers, Diabetes, Blood Pressure, Dementia, Arthritis, Fibromyalgia, Hypo- and Hyperthyroidism, and even many cancers.

8) I know of only two cases (besides research references) where this has worked: myself and my fiance (it eliminated her Diabetes II and Blood Pressure problems as well). That's 100% cure rate but a terrible sample base. "Your results may differ".

This information is based on researched guessing, trial-and-error, and observed results.

I'm presenting it so that YOU can determine whether you want to take the risk (which, aside from disappointment, doesn't entail much) to give it a try yourself. I'm not here to convince/coerce/make money from you.

I know my results. I continue to be entirely symptom-free and with some light restorative exercising of my affected systems I've returned to the energy and clear-mindedness of my pre-CFS self.

What you do with that information is up to you.

It's hard, believe me I quite understand.

Most Sincerely, and with hope for us all...
The wizard Lawrence
CFS treatment and Blood tests
by: The wizard Lawrence

Katherine: Did you have any blood tests done for Chronic Fatigue Syndrome?


I got my doctor to order a blood test from Qwest - the results were that I did indeed have an HHV-6 outbreak (my antibody count went above their maximum measurement rate of 160, though no viral body parts could be found in the blood sample. Unfortunately, it was the only test I could afford at the time and the only one my doctor would permit. Also unfortunately, it couldn't tell me if I had an active infection right at that moment, either. These tests have gotten more common these days.

CFS Blood tests
Get a blood panel done.
Look specifically at your vitamin D and white blood cell levels.
If vit D is down and wbc is up, note it.
Your doctor may be able to prescribe vit D2, or you can purchase it over the counter.

CFS Treatment I undertook


Viral treatment for CFS
Use Acyclovir (800mg) (if possible. I don't think it's an absolute necessity) about 5 times per day for about a week. You should feel significant improvements in the symptoms by then.

Then, start the enzyme therapy along with the Acyclovir.
ViraStop 2x (first session) or Multi-Enzyme from The Vitamin Shoppe (second session) taken this way:

Start with two enzyme capsules and one Acyclovir 4x / day for the first couple days.
Then, up it two more enzyme capsules, keeping the 4x schedule.
You may feel the symptoms come back a bit. If so, keep at that level until the symptoms mostly go away (2-3 days). If not, up the dose another two capsules the next day.

Repeat the procedure of upping the dose (pausing at that level until symptoms fade) until you get to the point where the dose no longer causes your symptoms to show (this process could take a couple weeks and bring you up to 12, 14, or even 16 capsules PER DOSE).

Once there, reduce your dosage by TWO enzyme capsules, and continue that dosage 4x per day for NO LESS than 14 days.

On day 15, start ramping down the dosage by two capsules per dose (or, 8 capsules per day) for the full day. If your symptoms come back at any point, stay at that dosage for a couple days until they're gone, then continue ramping down daily until until you're no longer taking the enzymes.

More about enzymes for healing CFS


Here's a link which is part of my research into
how enzymes might cure a virus

I'm told that you can't overdose on enzymes.

I don't know which specific enzymes work best, but the Multi-Enzyme does seem to cover it.

You may experience what I call "Enzyme Butt" (itching and scratchiness of the anus as if you'd been pooping sand) but that's the only side effect my partner and I have noticed.

The Acyclovir is a prescribed anti-viral, and make sure you drink plenty of water with that.
I strongly suggest the 800mg, but check with you doctor of course, especially if you're taking other meds.

PLEASE NOTE: Once the therapy is done, go for a couple/few weeks without any enzymes. If you start having symptoms again, repeat the therapy just as before.

Once I noted the improvement of my symptoms, my doctor approved my request for stronger doses of Acyclovir - she moved it up to 800mg tablets. And though it seemed to make her a little nervous, she also approved a quantity that would allow me to take six tablets per day each month.

Based on my blood tests, she also prescribed vitamin D2 and ZenPep (the only enzyme supplement KP allowed), though the ZenPep usually was prescribed in cases of suspected pancreatic difficulty.

Please see my disclaimer in another comment box.

Good Luck.

tags: CFS treatment, healing, blood tests, Chronic Fatigue Syndrome
CFS caused by virus?
by: The wizard Lawrence

My two theories for CFS cause


At the very beginning there was an important choice I had to make - since my doctor couldn't definitively state I had CFS or even make a guess at it's cause, I concluded that the CFS was either a problem with the Thyroid (hypothyroidism, considering the symptoms) or a problem with the Thyroid (and other organs) caused by HHV-6 (viral cause for CFS symptoms).

Which CFS treatment to try?


I figured that if it was a virus, an anti-viral would have some type of an effect.

If the illness was not viral, an anti-viral would produce no changes (my doctor agreed with this).

Starting with the anti-viral would be a good indicator of which path of therapy I would pursue, and safe as well since the anti-viral wouldn't cause any problems if I were healthy.

Question from Katherine: Did your Doctor prescribe Acyclovir? Was this a private doctor? What evidence did she need to prescribe for you?

I live in the UK as do some of the visitors to www.HealingCFSME.com. Most of us have non-private medicine and the Doctor would only prescribe if there was scientific evidence into the benefits of the medication.

My Primary Care Physician (KP), reluctantly, prescribed the Acyclovir (400mg) based on what I was (almost incoherently) able to tell her of my symptoms, with the idea that if there were no effect then the prescription would be stopped; but if there were positive effects then we'd see where to go from there.

Keep in mind that researchers didn't find Acyclovir all that effective, and tended to favor Valcyclovir as an anti-viral (NOT a virucide) but that wasn't available thru Kaiser.

Do enzymes or Acyclovir conflict with other treatments?


Despite my "disclaimers", I don't think the enzymes or the Acyclovir will conflict with many other treatements for CFS that people might be trying.
Neither are addictive, nor can one overdose on them.
Acyclovir shouldn't be cut off all of a sudden, and the only contra-indicator my doctor mentioned is fish oil.

BUT, since I wasn't taking any other medication, I didn't pay a lot of attention to the contra-indicators of Acyclovir.

~~
Here in the U.S. about 35 yrs ago the entire medical community moved to blood diagnoses.
My theory is that since viruses cannot be detected in the blood the herpes viruses got hidden.

I suspect that most diagnosed diseases out there are actually "symptoms" of viruses.

~~

Acyclovir less significant than the enzymes


I'd like to make clear that the Acyclovir is NOT a significant part of the therapy suggested. I used it for three reasons based on researched GUESSES:

1) to POSSIBLY determine if my condition was virally induced (if it wasn't, then the Acyclovir would have no perceivable effect and I would pursue other treatment avenues)

2) to somewhat reduce my symptoms so that I could move forward (though no one, including my doctor, seems to know why this happened)

3) to cover the POSSIBILITY that the virus may be contained and to POSSIBLY prevent re-infection from outside sources

The cyclovir families are designed to prevent viruses IN THE BLOODSTREAM from reproducing. They have no effect on intra-cellular viruses like HHV-6 and such.

I don't suggest that anti-virals of any sort are essential for recovery.

I believe that enzymes, preferably a broad-spectrum supplement, were the key to my CFS recovery.

Please see my disclaimer in another comment box.

tags: CFS caused by virus, viral, chronic fatigue syndrome
CFS recovery two months plus...
by: wizardLawrence

CFS recovery is two months plus, and counting... I continue with no CFS symptoms.

My fiance is starting the ramping down process at this point, with no notable symptoms. Hoping for recovery #2...
CFS trouble tolerating supplements
by: Delia

Ready for nursing home


Dear Lawrence,
I'm slowly working through your information and have gotten to the point of when you started this therapy.

I appreciate all the work you have put into keeping track and sharing with others.

I really perked up when I read in your article that you were on the verge of nursing home care when you started treatment, because that is where I am. But as awful as you were, and how awful it was for you, you were not near yet where those of us are who are at later stages of the disease and really are needing nursing care but can't get it because no one believes in this illness or its severity. I don't mean to minimize or dismiss your experience or its awfulness in any way!

From what I read, you seemed to be in my very unscientific stage 1-2 of CFS/ME.
Stage 4 is getting close to needing nursing home care. Sadly it can get very much worse than what you have gone through. I'm actually very glad you found your therapy before it progressed.

I am very, very glad for you! And any others who might be helped by your sharing of your information!

Another caution: as those of us get into the later stages we have great trouble tolerating supplements and MEDS, so not only can we not take mega doses, we often have to take micro doses. And test and journal, and the tiniest things can makes us even more bedridden and unable to care for ourselves at the limited levels we have on our best days. When I was at stage 2 like you (my unscientific estimation) I could easily have followed your protocol, and high doses. Today it might end me up in the hospital again, for just a normal dose.

And hospitals are not where you want to be with CFS/ME.

So you might put some disclaimers.

I was planning to try the enzyme + antiviral therapy next myself! I'd been waiting 6 months as a family member was going to come and live with me, and I did not feel safe without someone to help care for me.

That plan has fallen through, but I am hoping that once I get through my moving (multiple chemical sensitivity (MCS)issues and sensitivity to dust and non toxic mold among other things start really coming in at the later stages and I am trying to get to a 'clean' environment) I hope to be able to start over again on my next therapies. Either this therapy or back on the methylation which was nearly killing me.

I was thinking like you are, that the CFS cause is the re activated herpes viruses for many of us. I got sick in 2005 and HH5 came up in my tests then.
And I do believe like you, that in CFS/ME the organs becoming impaired. I think that's why the MCS et al has become so severe. The body just can't process out environmental toxins as it could before.


Thank you again for your detailed diary and sharing your information for all who might benefit!

tags: CFS/ME, trouble tolerating supplements, tolerance, stages of CFS, MCS, herpes virus, enzyme therapy, antiviral
Severe CFS is a BIG problem
by: wizardLawrence

Hello Delia - sorry to take so long to reply.

Yours is an interesting situation - you got hit at about the same time I did (2005). You may well have more severe CFS because of where the virus reactivated, what portion (or maybe ALL) of the virus got activated, and how long it took to get anything even slightly significant done about it.

Several people have mentioned that I had less severe CFS than them and I'll not take it as minimizing: indeed, mine never reached the severity or the longevity that so many others have experienced.
Of course some had it for much less time than I did but died instead (like my boss and friend, Bill).
Others have had it much longer but only developed minor symptoms.
For others, like my fiance, the only major symptoms for years were Diabetes II, high blood pressure, and a weight problem (both the Diabetes II and high blood pressure have disappeared months ago).

None of this is surprising. How severely one is hit by the reactivation, whether it lasts, and what CFS symptoms or other symptoms show will be different for everyone.

For those, like you Delia, with more severe CFS, the enzyme dosage may need to be stronger and/or last longer.
Stanford is saying that the harder one has been hit and/or the longer one has the virus, the longer enzyme therapy takes.

However, since the enzyme therapy brings out the symptoms a bit more severely for a TEMPORARY period (2-3 days max) at each stepping up of the dosage, this might be scary for some but don't jump to conclusions. Everything I've seen about enzymes say that you can't overdose (like Vitamin C, any excess gets eliminated), has no contra-indicators, and no side effects. They can make your present meds/supplements/whatever MORE effective if not entirely useless.

I would STRONGLY suggest that if there is concern, certainly have someone who can monitor you while taking the enzymes during the therapy course (though I suspect you'll see pretty quickly that monitoring won't be necessary).

Keep in mind this, Delia: those sensitivities and allergies you're waiting against could be caused by the virus reactivation as well, even if they didn't start up at the same time as the CFS. My fiance's CFS and brain fog started more than a decade after the virus started her diabetes and high blood pressure.

Do what you can to check out my ideas on enzyme therapy for CFS and see if they at least make sense to you. I don't think you can be harmed by the enzymes.

GOOD LUCK, Delia - and to those who read this.

The wizard Lawrence
CFS News from Stanford
by: wizardLawrence

Note from HealingCFSME.com
Thank you for this, Lawrence.
You say, “Stanford says…”
I would be interested to know what this refers to. Is it research into CFS treatment or enzyme treatment?

Lawrence:
So far, Katherine, Stanford has not mentioned anything about enzyme therapy for CFS, and I've yet to get a response from my few queries.

In answer to your question the Stanford reference was about Dr Elizabeth Unger's address about CFS up to now (she's chief of the CDC and was asked to present for Stanford by Dr Montoya).

Here is the link
http://mecfs.stanford.edu/2014SymposiumVideo.html
the videos about CFS/ME are heartening.

Lawrence

Katherine T Owen:

It looks interesting, Lawrence. I thought I would list a few of the CFS/ME video titles so people can know what's on offer.

CFS/ME video 1
Epidemiology of ME/CFS, What Have We Learned?
Elizabeth R. Unger, MD, PhD

CFS/ME video 2
Daily Fluctuations of Cytokines in ME/CFS Patients
Jarred Younger, MD
Gene Expression Findings in ME/CFS
Amit Kaushal, MD, PhD

CFS/ME video 3
Lunch and Learn "Media Portrayal of ME/CFS"
Moderator: Phil Bronstein
Panel: Natalie Boulton, David Tuller, Erin Allday

CFS/ME video 4
"Cardiovascular Aging in CFS"
Mehdi Skhiri, MD
MRI Findings in ME/CFS
Michael Zeineh, MD, PhD
EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS
Marcie Zinn, PhD, Mark Zinn, MM

CFS/ME video 5
Approach to the Medical Care of a ME/CFS Patient: Medical Interview and Diagnostic Pitfalls
Anthony L. Komaroff, MD
Microbial Diagnostics and Discovery in ME/CFS
W. Ian Lipkin, MD

tags: CFS news, CFS research, CFS/ME, CFS videos
CFS recovery continues...
by: wizardLawrence

Yay! I got my bedroom ceiling painted! It's a project that got put on hold due to CFS 6 years ago, and got it done in one run - NO symptoms!
Update on CFS recovery on enzymes
by: wizard Lawrence

Well, it's July of 2016 - a couple years from my last entry. The enzyme therapy has proven effective and I'm active and energetic once again. Except for the time needed for the various affected organs to heal, I've only experienced a few intermittent bouts with CFS - specifically: a need to nap after six or seven hours of activity accompanied with brain fog, a reduced ability to pick up information quickly, speech is a little more difficult, and a somewhat more limited stamina.

However, my memory and cognitive powers have improved, recuperation time has shortened to about 15 minutes after heavy exertion, my sleep is far more restful and I wake up with more energy and clear-headedness. Physical response time is at least as good as it was before the CFS.

One thing I would like to add is that I've discovered that Iodine in our diet is becoming more and more scarce - there's even a trend to stop putting it in our salt - and the FDA's suggested daily allowance is far below what seems necessary for our Thyroid to do it's job properly. To rectify that, based on suggested research, I've started taking nascent Iodine as of 9 days ago, with the (nearly immediate) results of being able to sleep longer and more deeply, the need for a mid-day nap is no longer present, and my mind isn't affected by brain-fog even after an 18-hour day.

I'm taking Acyclovir (anti-viral) and ZenPep (enzymes) twice daily; once when I get up in the morning and once twelve hours later.

I'm considering one more round of Enzyme Therapy once I see what the longer-term effects of the Iodine are. However, it may not be necessary.

Good Luck to all you who read this...

Lawrence
Update on recovery from Chronic Fatigue Syndrome, enzymes
by: wizard Lawrence

13 November 2016
The Chronic Fatigue Syndrome seems to be creeping back slowly - whether from a mild reactivation of the virus or a re-infection is unclear. Memory gaps, brain fog, and a need to nap have started up again.

Many of the symptoms have not shown themselves - for example, I feel rested when I wake in the morning or after a nap, though the
6 hr time limit still pertains.

Still taking the iodine (which seems to be quite effective) along with my normal daily regimen of enzymes.

More research: Dr Sarah Myhill of the UK has put out a quite large amount of information about CFS… VERY worthwhile.

Her book, Chronic Fatigue Syndrome (It's Mitochondria, Not Hypochondria), and her website www.drmyhill.co.uk, has volumes of information on the workings of the cells and analyses of many causes of CFS.

I found this when trying to research how to remove de-activated viral units from cells (or whether they even need to be removed). I have not yet reached conclusions about the research, but Dr. Myhill's information has helped, A LOT.

So, as of today, I will be starting Round 3 of enzyme therapy using the Multi-Enzyme formula from The Vitamin Shoppe interspersed with doses of ViraStop (see previous entries). Ramping will be rapid since I'm going to start with 10 per dose 3 x daily.

Even if it's not a cure per se, having a two year hiatus from Chronic Fatigue Syndrome is certainly better than none at all. However, I'm still not satisfied with that.

I'll keep this site updated...


Reply from Katherine
I really appreciate you keeping us informed Laurence. As you say, a 2 year break of being able to be active is something to celebrate indeed.

And I hope you will recover from CFS to operate at this higher level once again.

Can you tell us what 'ramping' is?

Katherine
(author and editor of www.HealingCFSME.com)
Chronic Fatigue Syndrome and enzymes
by: wizard Lawrence

Sat, 01-14-17
So… round 3 of enzyme therapy was completed a couple weeks ago: 20 tablets of Multi-Enzyme (Vitamin Shoppe)3x daily for 15 days, not counting the two weeks of ramping up before and after. Symptoms, like the first two times,have disappeared.

There are still residual difficulties, however:

- Recognition of cognitive events, like meaning, is still delayed by a couple to few seconds (for example, it takes a few seconds longer to recognize a joke, read a passing sign, pair a matching set of cards, realize what card goes on which in Solitare, interpret a sentence or put a meaning to a slightly garbled statement). Though my eyes and ears are clear and I can see, say, a passing sign on the side of a bus, it takes several seconds to see and understand what the sign says. Pattern recognition is still delayed noticeably, and "mental arithmetic" requires more concentration than usual.

- Fatigue is still an issue, though minor and not as thoroughly debilitating; naps are still necessary most days and a day of ordinary, non-exertional, movement leaves my body feeling like I've been "working out" a bit more than I'm used to (sore all over). As well, my stamina is still pretty severely curtailed - say, approximately one quarter of the time I used to do things.

- While memory has improved in some ways as compared to before the virus hit (I remember names far better than I ever have), there is still certain recall issues, especially pertaining to finding the right words when typing or talking, though this is still much better than when the virus was most active.

- Speech is still a significant difficulty. I need to speak rather slowly now in order to communicate an idea or thought process, even if the idea is complete in my mind.

- Temperature control: I am still having a frequent if intermittent physical sub-temperature between 96.1 to 96.8.

However, there are several things I've found to ameliorate some of these residual symptoms:

- Nascent Iodine: 7 - 21 drops per day
- Taurine: a pinch in my morning drink, then a pinch twice more during the day
- Coffee
- Interest-stimulating activities: movies, books, projects, tasks that NEED to be done
- Dr Sarah Myhill's nutritional advice and many other of her concepts (to be found on her website)

That's it for the moment. Not yet a cure but it has certainly given me at least 85% of my life back. Further steps and theories to a cure are showing some promise...

Lawrence


Comment from Katherine T Owen

Can you explain what the 'ramping up' before involves for anyone who wants to try the same.

Congratulations. I think most of us would be delighted with an 85% improvement :-)

Thank you so much for keeping us informed. I know that many people - like myself will be interested in the detailed breakdown of your symptoms.

As part of living with Chronic Fatigue Syndrome I probably have more severe cognitive difficulties than yourself and yet I don't get the delay.
Although if I had overdone things, I would!!!

The temperature control is interesting. I, like many people with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, feel the cold. But many years ago when it started I think I checked and there was no change in actual temperature. It hasn't occurred to me to check it more recently. I wonder what other people find.

Wishing you, and all who visit here, continued healing,

With love,
Katherine


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