• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Rungs in my Ladder

Remember. I am not a Dr and any thing I write should not replace medical advice. My goal is not for you to copy me but to start your own research and discover the rungs in your own ladder.

Things that helped with brain-fog and fatigue..

Vitamin C - and lots of it. Liposomal when I was the sickest. I left a recipe on Phoenix Rising. Just look for posts from stridor.

Thyroid override. I have a TSH of .01 or there abouts. My thyroid is shut down and I keep my T3 level pegged at the upper limits. This also quelled mood swings (in my opinion).

Hydrocortisone - You don't get to think without adrenals. My first doses were OTC ointment put into capsules. My adrenals never recovered and I will be on HC for life.

Magnesium - assumed. Added with a bunch of other things so can't be 100% sure.

Thiol diet - I can have some thiols now. At one time thiols would make my sick for 2-3 days.And by sick, it was always brain-fog. fatigue and malaise.

Nicotine patches - nicotine is neuroprotective against glutamate toxicity (in rodents). It has a mild stimulating effect and when added to thryoid and hydrocortisone allowed me to be out of bed. Used it for 1 year. Do not use gum if there are amalgams in place.

methylfolate and methylB12 - The B12 turned on the lights for me. When I feel an increase in fog, I open a mfolate cap and pour it into the buccal pouch. I can't seem to absorb this stuff well. I take a lot of B12.

biotin - this one was a surprise. I was taking 6-8 caps a day but am down to 2 now. Plus what is in the multivitamin.

B2 - not really a rung in the ladder on its own but could not do methyl supports without it (and they are). I have had the symptoms of low B2 twice before I figured this out. Used 3 places in energy production. There is a theory that CFS starts with a B2 shortage that topples the apple cart.

Potassium - needed it in the first year or so of methyl support but don't take it now. Like B2 did not help with fog directly but allowed me to take the things that did.

l-carnitine fumerate - I battled with a different form = acetyl-l-carnitine 4 times. Horrible setbacks but it seemed to me that it would be something that was good for me. I was "carnitine shy" and held off on trying LCF too long. World of difference between the two for some of us.

Adenosylcobalamin - The 2nd form of B12 - used in mitochondria to produce energy. When needed the first dose is quite a lift!

n-acetyl glucosamine - helps with immune function Supposed to help with CYP enzyme problems. Took it for a year.

bupropion and tyrosine together - neither worked particularly well on its own at first. Dropped tyrosine after a year because I was getting irritable and bupropion did fine on its own. Trialed off it as well in 2015 and there was a drop in function. Trialled another wean in 2016 and brain-fog and depressive symptoms increased. I currently take 150 mg a day and likely always will.

Treating mycoplasma infection. 27 weeks of antibiotics and 20 H2O2 by IV. This was as big of a step as the B12. This doubled my capacity for activity during the day and dropped brain-fog to zero for periods of time. I also have HHV-6. After 8 months of doxycycline I tested negative for both mycoplasma and HHV-6 DNA. The virus is not gone, just in remission).

NAC - This takes weeks to kick in for some of us. I couldn’t take it for a long time when chelating - it increased fatigue and brain-fog. Phoenix Rising says that this is because it can strip B12 and Cutler says that it is dragging Hg around.
As of May 2017, I am trialling l-cysteine instead. NAC is also called Mucomyst and is a treatment given to break up thick mucous in the lungs. It was brought to my attention that breaking up mucous in the intestines might contribute to leaky gut. Leaky gut contributes to food sensitivities and in my case histamine issues. Worth a shot. I'll review in a few months.

Low Dose Naltexone - immune system modifier that I initially took to help with food sensitivities but instead it gave me more energy. Enough to start exercising which in itself is a rung in the ladder.

These are the things that I am reasonably sure about. There were others that worked or seemed to work for varying periods of time and were either placebo effect or temporarily helpful. Everything occurred against the backdrop of chelation.

As well, I react to most foods and eat a modified Paleo. Meat, most veggies and most fruit. I am currently taking coconut kefir. This is an attempt to acidify the small intestine to treat SIBO and leaky gut. The kefir has decreased the number and severity of hives.

“Recovery” is subjective. Is Bipolar gone or just very successfully treated? I have no plans to go off of thyroid pills to find out.

My thyroid and adrenals never made it and I had my colon removed in 2013. Serrated Polyposis Syndrome which is related to disruption in methylation, low glutathione and my genetics.

I am once again leading an active and rewarding life.

Comments

what is your dose of HC and thyroid hormone stridor? Thanks for sharing all this info on your blog!
 
I take 5 mg of hydrocorisone x 5 daily. And I stress dose occasionally. I never get this right as some days I can get away with an activity or an activity level that will give me grief the next.
I also take desiccated thyroid at 90 mg a day as well as levothyroxine 50 mcg at bedtime.
And of course, you are welcome :)
 
Glad to hear of your success @stridor . I've shared many of your hacks.

The bupropion and tyronsine combo worked for me for a number of years.. I knew it was the end of the bupropion when that jittery, wired-tired with hair trigger anger, became a regular thing regardless of dose. After months of withdrawl, my mood was very stable. The need to change from bupropion was having rTMS and PEMF (iMRS) treatments..
 
Yes, it would seem that our responses were close. Your reaction was exactly what lead to my dropping the tyrosine. I wish that I could have stabilized on tyrosine alone but could not. I am not happy to be on bupropion but considering what my poor brain has been through, I should likely consider myself lucky.
What was your response to the magnetic therapy?
 

Blog entry information

Author
stridor
Read time
4 min read
Views
781
Comments
4
Last update

More entries in User Blogs

More entries from stridor

  • NAC
    There are two main camps when it comes to methylation issues it seems...
  • Symptom Review
    bipolar cycling - was decreasing on its own by 2011 but I could sense...
  • North Bay Regional Health Centre
    I made many contributions over the nearly 30 years that I worked in...
  • Lessons from a Car
    Let me tell you a story that has impacted my approach to my health...
  • December 2016
    I am pretty excited because Dr Fred Hui said that I don't have to see...