My journey to heal from CFS - diary

[researcher]

Well, taking ascorbic acid in water doesn't take much of plan, just as nobody needs a plan to put sugar in coffee. Just start with a half teaspoon in water, without a bowel flush next dose a full teaspoon, so on till you get to 2 teaspoons of ascorbic acid (if bowel tolerance allows), which would be highly beneficial dose. If that is too acidic to you, add some bicarbonate. Continue with the dose which doesn't gives too much unwanted effects (ie. liquid bowel-movements, flatulence..). Even if you wouldn't benefit as much as me from ascorbic acid, since we are most to some degree dehydrated, the 3 glasses of water would already benefit on its own.

I only experimented with self-made liposomal C, but found it needs in the long term just too much efforts to sustain.

I didn't ask how to do the ascorbic acid, did I? ;-)

Or do you think that this is what I meant with "a plan in action that will activate the detox pathways by removing all the garbage that is in my body and slowly rebinding it." This has nothing to do with vit C. I mean, vitamin C will be a part of it, but thats it.

 

[pamojja]

This has nothing to do with vit C. I mean, vitamin C will be a part of it, but thats it.

Don't underestimate high-dose ascorbic acid before having tried.

 

[S-VV]

Don't underestimate high-dose ascorbic acid before having tried.

Absolutely! High dose ascorbic acid plus infrared sauna pushed my morgellons symptoms into remission.

Also, you can add L-lysine to disrupt herpesvirus replication. It seems to work synergistically with vit. C

 

[researcher]

Absolutely! High dose ascorbic acid plus infrared sauna pushed my morgellons symptoms into remission.

Also, you can add L-lysine to disrupt herpesvirus replication. It seems to work synergistically with vit. C

What symptoms exactly?

 

[S-VV]

What symptoms exactly?

The biting, stinging and crawling sensations diminished to about 20% of original intensity.

No new wounds appeared, and those that were present healed much quicker than is expected for morgellons.

Finally, the infamous red and blue fibers that appear coming out of the epidermis and in weeping lesions, have reduced greatly.

It is of interest that before I got this condition, and when being in remission, my vit. C bowel tolerance was of a few grams a day max. Now that I am worse, I can take ~2gm/hr no problem.

 

[S-VV]

What may interest you is that I started getting worse after heavy antibiotics use for SIBO, which overloaded all my detox pathways. Like you, I concluded that full-spectrum detox was necessary before any more killing.

 

[warriorgirl]

How are you feeling @researcher

 

[researcher]

hi y'all

I've been doing very bad lately, especially today.

However, I did bet better for a long while. I've recently (last 45 days) been feeling really bad (ups and downs), with more symptoms, such as head pressure, swollen head and eyes, impaired ability to focus or concentrate, sensation my head is pretty full and absolute exhaustion (occasional, meaning one day every 15 or so). Sometimes, the head becomes clear and the dizziness goes away. Right now, it is a rollercoaster.

Overall:

- 600mg of Milk thistle seemed to do the trick for liver pain;
- I know that extreme toxicity is the root cause of my problems;
- My lymphatic system is highly congestioned and my detox pathways are kaput;
- I recently found out that I am mercury, arsenic, cadmium and lead toxic (values tru the roof, actually); I already believed in this (as I said on Jun 4th), now I have confirmation;
- I have been taking upwards to 12g of vitamin C, without major results;
- I crashed big time to bee pollen; This may indicate infections, either viruses or bacteria. I hope (and don't think) it is not Lyme (that is a hard one to treat), I'd say viruses if I needed to guess;
- I am on a low thiol diet and thiols may be a problem for me, but I am still investigating this possibility;
- I started a 30 day very complete gut protocol I put together to detox a bit more aggressively during September;
- Once I start to get worse, I need to rest as much as possible.
- I really need to mediate and visualize 3 times a day, but it seems impossible for now, with so much fatigue and brain fog.

Other than this protocol, I am currently waiting for some bloodwork and will test the adrenals, and introduce ACE and HC to support them once possible.

 

[researcher]

OK.

I've been really making some progress as far as "getting to the bottom of my condition", and here's my take:

1 - There is no such thing as CFS. CFS is a condition - or a group of symptoms - that many people arrive at, through different paths. It may be Lyme, heavy toxicity, a virus or a reaction to a sock (such as glandular fever), to name a few.

2 - I believe my case is one of extreme toxicity and co-infections (hope its not Lyme, hope its viral). I believe that antibiotics poisoned my spleen and lymphatic system, and caused an excellent environment for other pathogens to enter my system or show up after years hiding. As of today, I think that toxic metals (mercury, cadmium, lead and arsenic) are 50%-60% of the problem.

3 - Currently, my system is completely exhausted. That is probably so due to dealing with extreme toxicity on a daily basis (not being able to detoxify) and some co-infections. I should increase my sleep time badly and try to take a nap at 2pm (I am one tired but wired dude, so this may be hard).

4 - I used CDS pretty successfully in March/April, as my symptoms got way better (both fatigue, head pressure, dizziness, etc). I think this indicates co-infections. Parasites that is for sure. I will address them later.

5 - I need to increase my Krill and no-inflammation formula intake, but this is merely symptomatic treatment, with some little help to the body.

All this said, I am still struggling to have a bowel movement every single day. Kiwis do helps a lot, but not fully, especially because I do binders now. I think that a 12h Kefir fermentation before bed does the trick, but I don't have enough data on this yet.

Also, oddly enough, I am getting very fit and was actually able to put some muscle on:

https://ibb.co/hLX8Qp

For now, I will do the 30 day gut protocol (heavy stuff) and then will address heavy metals. Then, for a 3-6 month period I will focus on giving my body what it needs, resting as much as possible, etc. It will be a lot of stress.

 

[Learner1]

Just a thought... if you are still working with your naturopath, how come he/she isn't working on the heavy metals with some sort of chelation protocol and methylation?

I've used EDTA, DMSA, DMPS, and ALA, alone or in combination over the past 6 years, along with a customized methylation protocol and curcumin, to get rid of arsenic, cadmium, lead, mercury, and platinum toxicity.

 

[researcher]

@Learner1 I live in Portugal. Heavy metals is not a big problem here. This country is very clean, if we compare it to the US. Even tap water is OK (I filter it though). I feel I know more about health than my naturopath, which is a fucked up feeling. I simply don't have the experience of treating thousands of people, that is key.

In case you're wondering, I am Mercury, Arsenic, Cadmium (extremely toxic) and lead toxic. I've got them all. My system stopped detox a long time ago.

I will do ALA low-dose frequent chelation Cutler's style. I will then move to DMSA to address lead. But for now, sticking to ALA.

Matter of fact, the detox in 2017 messed me up big time. I used 200mg of ALA a day and I didn't know what I was doing. I believe I redistributed a lot of metals back then and what I am going through is partially the result of that.

Did you get much better after chelation? Have you chelated all metals successfully?

 

[Learner1]

Yes, in the long run, I chelated all the metals successfully. It took a long time, and I was diagnosed with stage 3 cancer along the way, which is why I ended up having to chelated platinum from the carboplatin, too.

They did come out one at a time, first mercury, then platinum, then cadmium, arsenic and lead. I started with oral DMSA at the beginning, but also used IV EDTA for the platinum, and more recently, used PolyMVA, an alpha lipoic acid polymer, to get the arsenic and lead out of my mitochondria.

With all of this, I was on a robust methylation protocol, with folate, MB12, B2, B6, magnesium, TMG, B1, and molybdenum, along with glutathione precursors like NAC and glycine.

Once the metals are mobilized, they need to be properly metabolized and get out of you, or they can be reabsorbed as you have found. This is why the methylation is important.

At times, too much stuff got mobilized for my body to deal with, and my kidneys and liver were stressed (GFR dropped while AST/ALT were elevated). I'd have a weird headache, nausea, and intestinal discomfort. Curcumin helped my body catch up, and my kidneys and liver normalized.

The ALA will pull toxic metals out of your mitochondria. It's a good thing to get them cleaned out but can be very hard on your body if you don't have the other pieces in place.

It also takes longer than one might expect. I spent the better part of 6 years chelating as fast as I could under an excellent doctor's supervision. If I'd used Cutler's protocol, which is mostly for mercury, it would have been too slow, and given my cancer, I think id probably be dead before it ever cleaned me out.

It's definitely worthwhile to do, but wise to learn all you can about the many chelation protocols, tools, and tests, and think carefully before designing your program before you make mistakes that could set you back.

After doing it, I have more energy, a body that can fight other problems better, and a lower chance for cancer and neurological disease. But its been a journey.

Best wishes...

 

[researcher]

@Learner1 Stick around for another little while, please.

Could you please point me to good and basic reads on methylation? This is something I haven't studied yet. I came across the concept several times, but never found easy reads on this.

Yes, I know the concept of metal redistribution by now. It is pretty nasty stuff.

What do you men with "It's a good thing to get them cleaned out"? You mean its good to remove the toxic metals from the mitochondria?

"if you don't have the other pieces in place." What other pieces you're talking about? I will take care of the gut before starting chelation for sure, and I will support the liver, the adrenals and the kidneys throughout, but I am not thinking about anything else... any comments?

I decided to give this a 2 year window, and in that context, Cutler's seems OK. It also seems to be a very archaic protocol, to say the least (as it was invented in the 80s, I think) but one that minimizes damage.

What other protocols are you aware of? I know Shade's methods, which go totally in the opposite direction of Cutler's, but I am not aware of any other method. Could you please point me to some material on this?

You should be happy with your results. It seems that the worst is behind you and you can not head to full recovery, no?

All the best to you too.

 

[place]

Ok read through your posts. And finally got to your sinus issues.

I have chronic infections and depending on where the infection is , I get different symptoms.

In my max, so tired I can’t keep eyes open. Frontal, brain fog, pain. The very second I get the infection out, I’m back to normal ( well 80% of pre sick). And when I’m about to get a new big infection, I’m hyper the first 24 hours before I get hit hard.

Solution: nielMed, with salt +baking soda, with baby shampoo, a drop. If the infection is in a place difficult to reach, i bend over to let the saline run to top of head and use mucinex to lose it all up.

Second thing for sinus and energy is gluten and dairy free. No cheats or I will pay for them dearly.

Everyone is different but I improved 40% when I solved my sinus issues.

Keep plugging along and documenting, you will improve!

 

[researcher]

Here are a few important notes:

- I think Omega 3 from Krill oil was helping me tremendously. I need to find a reliable, effective but affordable brand ASAP. I am currently looking for other inflammation modulators to help.
- I think that CDS was very helpful for me, back in March and April, and I may give it another shot. However, it is very unclear why it helps. It could be due to parasites, viral infections or others.
- I will run a bunch of tests to get to the bottom of all this. Only then I will be able to act and supplement accordingly. Genes, microbiome, nutritional deficiencies and what not are next in the list.
- I am thinking about doing the Paleo diet.
- 1 week left before heavy metal chelation. I am fearful but excited.

My latest bloodwork results came in yesterday. They look horrible. White cell count is at 3.1 when the limit is 4 - 10. Homocisteine is at 13!!!

Vitamin 25-D is at 30, which is considered insufficient. This makes no sense as I've been supplementing with 4 - 16k day and getting sunlight every single day. I may be dealing with severe malabsorption.

- I will quickly up my Vitamin D intake to 16k every single day.
- I will quickly resume eating beef liver.

 

[Lieselotte]

@researcher
I take EPA oil everyday and it helped me to lessen some gut inflammation (which I had even before CFS). Here is the brand: Douglas Laboratories. I think they make a EPA/DHA and krill too, worth checking out.

You should definitely try the Paleo diet. Helped me with gut issues and autoimmunity. After about a year doing it, you'll start to see that you wouldn't go back to eating crap again even if given the choice. It's also helped me to put on muscle and lower body fat years ago, and now I think that has helped me not waste away as I haven't worked out in a year.

Your white blood cell count sounds like mine! My primary care doctor said "it's a normal variant" even though my count used to be 5-6. Gimme a break.

High homocisteine may mean you need some methylation support. Some MethylB12 and Folate, but I'm no expert at that. Cutting inflammation via diet helps too.

What is CDS?