My complete protocol - recovering well from bad 7 years+ CFS

susan

Senior Member
Messages
269
Likes
18
Location
Gold Coast Australia
Hi Carter,
I got my Cp up to 45 on a good day....if I left it a day a couple of days I was back to square one.

I received my stool test back yesterday and I have to say I am so glad I spent this money on these tests. It is just awful, I have so many gut infections, he names all the bugs, parasites, candida, and even SALMONELLA, can you believe. This is why he said I had neurotransmitters in over drive causing the constant anxiety, all coming from gut dysbiosis.

I am taking quite different stuff to you as the amino acid test highlighted what my body lacked. Feeling so much better since starting the methylation...was making enough b12 but next to no Folic acid so could not absorb it.

When I think how I have thrown money away for 21 yrs taking all the usless supplements, I think of the exciting holidays I could have taken.....must have spent $100.000 I reckon. Now I feel finally I am getting somewhere. I think it is worth paying $1000 approx USD to have the tests. I have to take 2 different kinds of probiotics, no gluten. He treats with herbs to kill of everything......

I can remember living with CFS where I could do a kind of "lifestyle"and I would think this life is OK......I can go out again after beign bed ridden for yrs, but only for 2 hrs...I got contented with this. However what many of us have not realized we can get worse like I have over the last 3 yrs. I am so pleased I found this cheap Doctor to work with and am already feeling bit better.....sleeping better and not so tired.
 

Marylib

Senior Member
Messages
470
Likes
87
Location
New Zealand
for Susan

Susan

When you get a chance, could you describe how you do the methylation protocol? Which supplements you use, etc. I get confused reading so many different possibilities.

Many thanks.
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Maxine,

This is really interesting. That book sounds great. I am feeling this magnesium miracle already and I am not even on it yet! :)

So from what you showed me magnesium chloride is one of the best forms to take?

Also how absorbable is magnesium sulfate in that case?


Hi Susan,

wow, I am waiting for my stool test results to come in (2-3 weeks). My doctor reckons I have some major gut issues. He used words like "diabosis" :D and I scored 135 on my ethanol test!

Could I ask you what treatment he is suggesting? Is he giving you any form of antibiotics?
 

susan

Senior Member
Messages
269
Likes
18
Location
Gold Coast Australia
Hi Marylib,
I agree with you about the confusion methylating. Been looking at it for years. This is why I am glad I found this doc/naturopath. The amino test Lab gave a reading of what I am deficient in....most minerals, vitamins etc. Doc makes up this formula including B12 with folinic acid to balance the body and methylate....no more guessing and not feeling confident in what I am doing. I think you are in NZ. He does phone email consultations.......anywhere in the world. Finally I have some paperwork that highlights what is really going on in my body.
 
C

Carter Burke

Guest
xlynx

Good luck with the magnesium! (Just remember to go REALLY light on it at first. Gauge how your body reacts to the smallest quantity first. IF you're deficient, you might find the sensation a little unusual! It amazed me a mere drop of magnesium oil on my fingertip had such a strong effect at first, as the stuff's meant to be used as a relaxing massage oil.)


susan

It was the L-5-methyl tetrahydrofolate form of folic acid (which you get in things like Actifolate and Folapro) which really seemed to get me methylating (at least kick-start my immune system). I had to go very easy on it at first.

I started out on B12 and folinic acid, and every few days I'd try adding the 1/4 pill of Folapro. It used to bring on quite acute viral symptoms - orthostatic tachycardia, temperatures, etc. Only for a short time, but I managed to ease into it over weeks/months. Really seems to have knocked a persistent virus I'd had knocking around for ages out of the system.


Those stool tests sound really useful. I've used olive leaf extract, caprylic acid and oregano oil on and off. Right now I wonder if my diet's helping improve things there, I'm eating a lot of garlic and coconut milk. Been on a yeast and sugar-free diet for years now too - gluten-free for about a year too. (You can't do TOO much really can you!)
 
Messages
857
Likes
14
Location
East Coast
xlynx - magnesium sulfate

Hi Maxine,

This is really interesting. That book sounds great. I am feeling this magnesium miracle already and I am not even on it yet! :)

So from what you showed me magnesium chloride is one of the best forms to take?

Also how absorbable is magnesium sulfate in that case?


.........

QUOTE]

Hi xlynx,

I personally believe that magnesium chloride is great to take because of its ionization. However, everyone is different, and it is possible that one magnesium might help you more than another one.

Dr. Dean does not give a stability constant for magnesium sulfate so I am not sure about the absorbability. I was using magnesium sulfate cream for a while, but I find that magnesium oil (magnesium chloride) in a bath actually works better for me.

"The Magnesium Miracle" book gives a good explanation of many different forms of magnesium. If you are interested in looking at it, you can go to the amazon site (link below) and click on it. That should take you to where you can actually search within the book. If you search for "Types of Magnesium" one of the selections should come up with page 241. Starting there and for the next few pages is where she discusses types of magnesium and absorbability.



http://www.amazon.com/Magnesium-Miracle-Carolyn-Dean/dp/034549458X

As others have noted - just be careful not to start with too much. People with kidney disease or myasthenia gravis,excessively slow heart rate or bowel obstruction should not take magnesium without doctor's supervision.

Please keep us updated on how you do.

Good Luck,

Maxine
 
C

Carter Burke

Guest
Here's Dr Myhill's ebook btw http://www.drmyhill.co.uk/cfs_book.pdf

For me, the most complete guide to the condition and achieving consistent recovery there is.

Good bit on treating magnesium deficiency too, and why we're all so prone to it. Discusses oral, transdermal and magnesium by injection. Also mentions a number of things we need to improve magnesium status, longer term, like EFA's (omegas 3 and 6), Boron, sun exposure or Vitamin D3, etc.

The end section about recovery and pacing's very useful too.

I do get the impression recovery is something Myhill expects to see in her patients if they get the regime right. I certainly didn't see any hope for me for a long time, and I'd been experimenting with supplements, diets, graded exercise and everything, as well as reading everything I could find about the condition on the internet, for a good 5-6 years without making much progress.
 
C

Carter Burke

Guest
My pleasure :)

Very useful reference guide for me. Plus I use Myhill's site a lot, as it's often updated with her latest findings and patient feedback and things.


Here's my pacing protocol (already posted in the Pacing thread) I've been meaning to print for ages:


Here's my pedometer steps/day measured for coming up to 2 years.



You can see, day by day, it's anything but linear. But what's fascinating for me is that the trend line in the middle has actually been incredibly consistant. (Starting off just above 1 additional step/day, and slowly going up to 1.5. If fact the rate of recovery has been more like 1.3, consistently, with a jump half-way through due to Glutamine and BCAAs.)

And what really surprised me is that the upper and lower limits on my typical days seem to have followed this trend pretty accurately too. (So it's really NOT representative of fitness, it's representative of something happening at the cell level.)

You can see at the beginning, I made the rookie mistake of wearing a pedometer and semi-consciously trying to further my steps/day, like a typical Type A personality... I got to almost 2,000, and then spiraled back down over the next few weeks. (A classic example of poor pacing - even though this was a LONG way from actually being fatigued from exercise. I wouldn't have even noticed the over-exertion and fall had I not been measuring steps. In fact I suspect that up and down trend is what I'd been doing for years and years, and probably what most PWCs who aren't pacing perfectly are doing all the time.)

Then I felt better around day 95-100, and did the same thing again - in fact this time spurred on by having just discovered transdermal magnesium, which seemed to give me a genuine boost - I think after that I learned that I had a boundary I had to stay within to make consistent improvements.

But interestingly, even though there have been viruses, periods of stress, periods where I've been fatigued, where I've exercised, where I've done too much, etc. the longer-term trend, of 1.3-1.4 additional steps/day, hasn't really changed much.

An interesting point is around day 380, where I added (from my own research into sports science and nutrition) 15g L-Glutamine, 10g BCAAs and 1-2g Malic Acid.

A problem up until then was that going towards my upper limit of daily activity - especially a few days in a row - would often bring on muscle soreness/fatigue in the thighs/knees. And this in itself is a sign of pushing - it's giving the body more to deal with in repairing tissue and adding to the free radicals and waste products the body needs to get rid of.

(In fact, by now, as I wasn't getting much central fatigue, I'd use muscle soreness as a barometer of whether I'm pushing too much.)

So what do athletes use to combat this? L-Glutamine and Branch Chain Amino Acids seemed popular with bodybuilders for avoiding these same symptoms. (I since learned they're almost always low in CFS. In fact, when you need to use/repair muscle tissue, the body's stores of L-Glutamine are used up quickly, and Glutamine's not only a semi-essential amino acid used by muscles, it's also important for the immune system...! So low Glutamine in itself could explain both over-training in athletes and why we get weakened immunity when we push ourselves physically with CFS. I think there's a strong overlap.)

So yeah, I got a sudden jump in my trends almost as soon as I added those supplements.

You can also notice now I can have days where I push to almost 3,000 steps, and unlike the earlier days, that doesn't result in me going downhill for the following days/weeks. So there's obviously a much greater capacity for work now.

(Steps are only a part of the picture. I'm also driving and going out much more frequently and for much longer stretches now. I'm doing some basic conditioning exercise now too, and obviously using my chart to ensure I don't push.)

VERY helpful! It's taught me about not only pacing, but pacing very specifically to my own condition and the nature of my recovery. So I'm sure other people will find their trends are completely different.





PS - Should also mention, BEFORE I started with the pedometer, I'd been taking all the supplements Myhill recommended and had my activity down to a bare minimum for about 3 or 4 months at least. Probably averaging about 700-800 steps/day. I started with the pedometer as soon as my symptoms had eased up a bit and I felt like increasing activity a bit... I think the stabilisation phase before was very important though.
 
C

Carter Burke

Guest
Which makes it all the more annoying when it doesn't happen.
Doesn't it?

Bear in mind I was sticking to a tight protocol and pacing perfectly for over a year before I *noticed* any improvement. The trend on my graph (+0.1%/day, long-term) would've been far too subtle to notice.
 

mojoey

Senior Member
Messages
1,213
Likes
68
Hi Carter

Thank you for your detailed account of your recovery! Your pedometer chart blew me away. It speaks volumes about your dedication and patience, and frankly your time-series analysis is more convincing than even Dr. Natelson's preachings on pacing. Thank you for taking the time to put that together.

I have taken all the myhill supplements (and just about everything else you listed) but they didn't help me much. I think there are different degrees of mitochondrial impairment, and the black mark in my live blood analyses from the last 2 years has been fast degeneration of cells (anaerobic metabolism). I don't think supplying the cells with mitochondrial food is enough when the cell is completely anaerobic, at least not for everyone. However, I think it's great that it worked for you.

I wanted to bring up the KPU protocol here because it goes along with feeding the cells compounds they're longed starved for. KPU is a state of abnormal heme groups resulting from deficiency of compounds like zinc, manganese, B6, biotin etc--resolution may resolve methylation and HLA issues. Found in 80% of chronically-ill patients by Dr. Klinghardt. So far, this has led to massive metal-dumping for me, general flu-like symptoms for the last month. Ramped up immune activity has been a common effect of the protocol.

So don't think it is true for all of us that we're only missing mitochondrial compounds. I know of many that have followed Myhill's advice to the T (including her lab tests) and still have much work to do. Many report feeling better on mitochondrial foods, plateauing, and then totally relapsing after they stop them. That tells me that for those particular patients, her protocol may serve as a stop gap than address the cause. As a counterpoint, I do respect how often she changes her protocol depending on new things she's learning. That's the mark of a great physician--separating ego from patient care.

I know that pacing may be the lynchpin from the way you describe things. I tried this for many months, but just didn't have the patience and discipline to continue. I think certain patients just may not be cut out for it. I know my mentality is still to search for the therapy that would re-boot the cells. Mike's story tells me that isn't wishful thinking because he went from bedbound to full-on exercising. Frankly I think our personalities and philosophy toward illness have the most bearing on which protocols we stick with. Some people simply accept therapies that mitigate symptoms, others go for the big kahuna. There is no right or wrong, but simply what resonates with us and our personalities' limitations (or strengths depending on how you look at it).

Thank you again for your story. I appreciate all the nuances you provided, and I'm always open to learning more. Please keep up updated as you go along!
 

garcia

Aristocrat Extraordinaire
Messages
975
Likes
247
Location
UK
Bear in mind I was sticking to a tight protocol and pacing perfectly for over a year before I *noticed* any improvement. The trend on my graph (+0.1%/day, long-term) would've been far too subtle to notice.
I agree with a lot of Joey's comments. It's an impressive graph, but mito supps will only go so far for some of us.

You've doubled your average walking distance from 1000 to 2000 steps over the time period. How far would you say this was roughly distance-wise? Time-wise (i.e. how long does it take you to walk)? Also do you go for a daily walk, or is this just the average number of steps you take during a day (i.e. do you wear the pedometer all day?).

Do you think the exercise:
a) substantially contributed to your improvement
b) stopped you going backwards and maintained functionality
or
c) Was a direct indicator of your cellular function at any point in time (but not necessarily cause of improvement)?

many thanks,
garcia.
 

Sushi

Moderation Resource Albuquerque
Messages
17,324
Likes
27,241
Location
Albuquerque
I wanted to bring up the KPU protocol here because it goes along with feeding the cells compounds they're longed starved for. KPU is a state of abnormal heme groups resulting from deficiency of compounds like zinc, manganese, B6, biotin etc--resolution may resolve methylation and HLA issues. Found in 80% of chronically-ill patients by Dr. Klinghardt. So far, this has led to massive metal-dumping for me, general flu-like symptoms for the last month. Ramped up immune activity has been a common effect of the protocol.
Hi Joey, I have been doing LED's, photon therapy, and herbal therapies with a doctor for the last few months. After treating Lyme and XMRV, I began to dump mercury for the first time. He then did an LED for mercury and has prescribed micro silica to help with further metal detox. He also said it was time to start working on KPU and has asked me to increase the same compounds you mentioned, though he wanted me to increase them slowly. I have started to do that. I wonder what you think about going right to high doses or titrating up?

This is an interesting development for me too.

Sushi
 

mojoey

Senior Member
Messages
1,213
Likes
68
Hi Sushi

I don't want to hijack this thread, so please PM me or reply to my thread for anything not related to her protocol.

I would say: if your doc is well-versed in KPU, go with him guidance on dosing.

I think usu what happens when we kill bugs is we release metals too. Many have a synergistic relationship. That goes for XMRV, fungi, lyme etc.

Microsilica is great. Klinghardt says it's 100x stronger than DMPS/DMSA.

Seems like you found a really great doc!
joey
 

richvank

Senior Member
Messages
2,732
Likes
925
To m0joey re: KPU

I wanted to bring up the KPU protocol here because it goes along with feeding the cells compounds they're longed starved for. KPU is a state of abnormal heme groups resulting from deficiency of compounds like zinc, manganese, B6, biotin etc--resolution may resolve methylation and HLA issues. Found in 80% of chronically-ill patients by Dr. Klinghardt. So far, this has led to massive metal-dumping for me, general flu-like symptoms for the last month. Ramped up immune activity has been a common effect of the protocol.
Hi, Joey.

I just want to say that if a person has KPU, it makes a great deal of sense to treat it before or as part of methylation cycle treatment. Several of the nutrients that are depleted in KPU are cofactors for enzymes in the methylation cycle and related pathways. Zinc and B6 are two very important ones.

Rich
 

mojoey

Senior Member
Messages
1,213
Likes
68
Hi Rich

I agree. I also wanted to point out that I've done the simplified protocol for over 2 years now, and in the middle did the full yasko for about a year. I believe fixing methylation is essential but in my case, not enough by itself.

I do think it has helped prepare me to handle the die off from KPU better. The two protocols really seem to have a lot of synergy.
 
C

Carter Burke

Guest
@m0joey:

Thanks for your words! Please feel free to go into as much depth as you want in this thread.

That KPU protocol sounds really interesting. Just looking it up though, there's not much there that's not in my current protocol. And I'm additionally using an FIR sauna for detoxing metals.

I can imagine some people make rapid improvement on the Myhill mitochondrial supplements, then crash later on or when they stop taking them... The thing is, my improvement's been so gradual and consistent, I'd have to assume it's a long-term, cell-level change, rather than simply being boosted by vitamins.

I'm certain using the mitochondrial supplements as support to increase activity levels rapidly would lead to crashing, as the cells are still damaged, and as far as I know, repair and recovery at that level is always going to be a slow thing. Perhaps it could be sped up by adding more aspects of this KPU protocol. Another very useful thing for me to look into while I've got myself to experiment on!

But I think there's no point using supplements as extra energy... That approach seems doomed to failure. I think without pacing, supplements are like adding more fuel or oxygen to a damaged car engine. (From talking to people in general, I think the CFS personality's the biggest obstacle in front of recovery for most. Tends to cycle between over-ambitious/overly controlling and fatalistic/defeatist.)



garcia:

I've cut out exercise for these two years. I used to experiment with a lot of different graded activity plans. (I've tried very slow, daily increments; alternate day walks; rotations with yoga, walking and rest days; etc. That was where I was looking for solutions originally.)

No, at the moment I'm not doing set walks as a part of my routine. The pedometer stays on all day and gets a general impression of activity without any concerted effort to increase it. (It's only useful to me if the graph is somewhat representative of cellular function. Any attempts to speed things up have simply plateaued and sent me back down hill eventually.)

My saying is: Aim to be a healthy, sedentary person first.


When I have picked up gentle, graded walking/exercise routines over these two years, they've never actually had much effect on the long-term rate of recovery. There seems to be more danger of pushing and slowing recovery down than actually improving it. (Although I may be at the stage now where I can push more, and where graded exercise may be beneficial.)


Back when I was much more ill, I was doing set, mile-long walks (maybe 2,000 steps) in addition to general daily activity. The difference between then and now is I'm staying sub-symptomal NOW.

Back then I could do a 3,000 step day, but I'd have much more fatigue, more muscle problems, more viral symptoms, less consistency, day to day, and there didn't seem to be any long-term improvement - it seemed much more up and down. Much more how it is for CFS people who aren't pacing properly in general. You reach your limits each day and never leave enough energy for getting well and repairing damage, which is a very slow process, which benefits from a little assistance.
 
S

Suzy

Guest
Hi Carter,
I read Dr. Myhills section on hyperventilation. She mentions that it would result in respiratory alkalosis which would result in blood on the alkaline side. My blood measures more on the acidic side. Have you had that checked ? I would imagine that would mean I'm not overbreathing. Can hold my breath for up to a minute

Suzy
 
S

Suzy

Guest
KPU testing

For those of you who have had this done, can you recommend a lab in Canda or the uS ?