stridor
Senior Member
- Messages
- 873
- Location
- Powassan, Ontario
I have put off writing this for a while. I have been waiting "for the other shoe to drop" but it has been months now and I am still moving, albeit slowly now, towards "better". I am almost recovered.
I got this way by finding people that I identified with and who had success with what I wanted to do.... and then I did what they did. With this in mind, I am going to give a quick history and then list the things that helped me. Just in case there are others on my path.
I had a long history of Bipolar symptoms with hospitalizations. I never responded well to treatment and took over my own care in 2007. Successes and failures. By the summer of 2010 I was having anxiety attacks, OCD-like thinking (one topic for months), agoraphobia - I played the mercury card. I had huge exposures on the farm
When the fillings were removed unsafely ME/CFS symptoms cropped up but I didn't know what they were at that time. I only knew that after any activity I would collapse 2 days later, plus I was too tired to move, couldn't stand, and had brain-fog and cognitive problems that were interfering with communication.
By the summer of 2011, my wife was helping me to stand. My muscles were wasting. I was on thyroid and adrenal replacement therapy. I would lose my breath trying to talk.
On the bright side, all cycling related to Bipolar was gone and on the down, I had a colourless, humourless, "all-low-monoamine-depression" that was part of my ME and so was diabetes insipidus.
On my second methylation attempt, (there is a post somewhere "A B2 Story") mB12 turned on the lights and I was able to return to work. Urine production returned to normal within 48 hours of starting mB12.
By this time, I had the diagnosis of Hyperplastic Polyposis and was being scheduled to have my colon taken out (ileorectal anastomosis). I also had been tested and had blood flowing the wrong way in my neck = CCSVI.
Freddd's Protocol allowed me to function reasonably well in 2013. I could be up all day and so long as I didn't push things I was able to go to work. There was some brain-fog but it was better. I could do light yard work for 2 hours without any payback. I could still trigger a "fatigue event" but it took about 3 hours of walking by the fall of 2013. With regular breaks, "life wasn't bad".
In 2015 I went after mycoplasma (also have HHV-6) and this has been as big of a step up as mB12 was.
I also have lattice degeneration (holes in retinas) - no new activity; psoriasis - approx 50% better if I stay away from certain food; eczema - remission but expect some this winter maybe; tinnitus - 75% better. My gut still does not work very well. I have to work hard to keep iron, B2, folate and Vit D levels up.
I am able to lift light weights and am increasing but I am 61 and do not feel the need to reach for the stars I go out to the workshop for 7 hours planing wood by hand. I am beat by the end of the day but am ready to go again by the next morning.
OK, you've been very patient with me. Thank-you. Here is my list:
Things that helped with brain-fog and fatigue..
Vitamin C - and lots of it. Liposomal when I was the sickest. I put a recipe on this site somewhere.
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 (IMHO).
Hydrocortisone - Was taking 13 ACE caps and my wife was still helping me to stand. I took 35 IV treatments as well. Nothing worked. You don't get to think without adrenals. My first doses were OTC ointment put into capsules. It meant that with effort I could get up the stairs without doing hand-over-hand on the banister.
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.
B2 - not really a rung in the ladder on its own but could not do methyl supports without it. I have had the symptoms of low B2 twice before I figured this out. Used 3 places in energy production.
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 bupropion as well in 2015 and there was a drop in function. Will try again in 2016.
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 much of the time. I also have HHV-6. I hope that with mycoplasma out of the way that my immune system will deal with this on its own.
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. I guess I take enough to deal with this now because I added it in the spring of 2015 and it has improved energy.
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 therapy using the Cutler Protocol. As well, gluten-free, very, very corn-careful, mostly dairy-free and generally trying to avoid anything that pissed my immune system off.
“Recovery” may or may not be an appropriate term. Is Bipolar gone or just very successfully treated? I have no plans to go off of thyroid pills to find out. So, my thyroid and adrenals never made it and I had my colon removed in 2013. (Hyperplastic Polyposis is related to disruption in methylation, low glutathione and my genetics).
I will carry the scars of this metabolic storm with me forever.
In 2012, before Freddd's Protocol, I was sent home from work "incapable" after 3 months I was asked to be Team Lead. After retirement this year I was asked to return as a “Consultant”. I am pursuing several interests and am in a photography club and writer’s group. I am able to be active for about 7 hours a day. I get tired but sleep is restorative and I am ready to go again the next day.
I will capture my story in a series of You Tube videos as people on this path get too sick to read. It will be my winter project.
My memory is better but far from perfect. My wife says that I can remember anything that I want to though
I want to thank @Freddd and the many people here who helped and inspired. I promise to drop by from time to time and will follow this thread if it becomes one brad
I got this way by finding people that I identified with and who had success with what I wanted to do.... and then I did what they did. With this in mind, I am going to give a quick history and then list the things that helped me. Just in case there are others on my path.
I had a long history of Bipolar symptoms with hospitalizations. I never responded well to treatment and took over my own care in 2007. Successes and failures. By the summer of 2010 I was having anxiety attacks, OCD-like thinking (one topic for months), agoraphobia - I played the mercury card. I had huge exposures on the farm
When the fillings were removed unsafely ME/CFS symptoms cropped up but I didn't know what they were at that time. I only knew that after any activity I would collapse 2 days later, plus I was too tired to move, couldn't stand, and had brain-fog and cognitive problems that were interfering with communication.
By the summer of 2011, my wife was helping me to stand. My muscles were wasting. I was on thyroid and adrenal replacement therapy. I would lose my breath trying to talk.
On the bright side, all cycling related to Bipolar was gone and on the down, I had a colourless, humourless, "all-low-monoamine-depression" that was part of my ME and so was diabetes insipidus.
On my second methylation attempt, (there is a post somewhere "A B2 Story") mB12 turned on the lights and I was able to return to work. Urine production returned to normal within 48 hours of starting mB12.
By this time, I had the diagnosis of Hyperplastic Polyposis and was being scheduled to have my colon taken out (ileorectal anastomosis). I also had been tested and had blood flowing the wrong way in my neck = CCSVI.
Freddd's Protocol allowed me to function reasonably well in 2013. I could be up all day and so long as I didn't push things I was able to go to work. There was some brain-fog but it was better. I could do light yard work for 2 hours without any payback. I could still trigger a "fatigue event" but it took about 3 hours of walking by the fall of 2013. With regular breaks, "life wasn't bad".
In 2015 I went after mycoplasma (also have HHV-6) and this has been as big of a step up as mB12 was.
I also have lattice degeneration (holes in retinas) - no new activity; psoriasis - approx 50% better if I stay away from certain food; eczema - remission but expect some this winter maybe; tinnitus - 75% better. My gut still does not work very well. I have to work hard to keep iron, B2, folate and Vit D levels up.
I am able to lift light weights and am increasing but I am 61 and do not feel the need to reach for the stars I go out to the workshop for 7 hours planing wood by hand. I am beat by the end of the day but am ready to go again by the next morning.
OK, you've been very patient with me. Thank-you. Here is my list:
Things that helped with brain-fog and fatigue..
Vitamin C - and lots of it. Liposomal when I was the sickest. I put a recipe on this site somewhere.
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 (IMHO).
Hydrocortisone - Was taking 13 ACE caps and my wife was still helping me to stand. I took 35 IV treatments as well. Nothing worked. You don't get to think without adrenals. My first doses were OTC ointment put into capsules. It meant that with effort I could get up the stairs without doing hand-over-hand on the banister.
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.
B2 - not really a rung in the ladder on its own but could not do methyl supports without it. I have had the symptoms of low B2 twice before I figured this out. Used 3 places in energy production.
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 bupropion as well in 2015 and there was a drop in function. Will try again in 2016.
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 much of the time. I also have HHV-6. I hope that with mycoplasma out of the way that my immune system will deal with this on its own.
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. I guess I take enough to deal with this now because I added it in the spring of 2015 and it has improved energy.
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 therapy using the Cutler Protocol. As well, gluten-free, very, very corn-careful, mostly dairy-free and generally trying to avoid anything that pissed my immune system off.
“Recovery” may or may not be an appropriate term. Is Bipolar gone or just very successfully treated? I have no plans to go off of thyroid pills to find out. So, my thyroid and adrenals never made it and I had my colon removed in 2013. (Hyperplastic Polyposis is related to disruption in methylation, low glutathione and my genetics).
I will carry the scars of this metabolic storm with me forever.
In 2012, before Freddd's Protocol, I was sent home from work "incapable" after 3 months I was asked to be Team Lead. After retirement this year I was asked to return as a “Consultant”. I am pursuing several interests and am in a photography club and writer’s group. I am able to be active for about 7 hours a day. I get tired but sleep is restorative and I am ready to go again the next day.
I will capture my story in a series of You Tube videos as people on this path get too sick to read. It will be my winter project.
My memory is better but far from perfect. My wife says that I can remember anything that I want to though
I want to thank @Freddd and the many people here who helped and inspired. I promise to drop by from time to time and will follow this thread if it becomes one brad