Hi Dbkita,
I have a couple of questions along the way here before I dig into this one.
Do you take Metformin? Do you have insulin disorders of any kind? What about adrenal gland malfunction? Also, your age could help in understanding things. Any chemotherapy type drugs for any reason; even as topical application?
No Metformin or any chemotherapy drugs.
No insulin disorder I am aware of. Fasting glucose has stabilized in last year at 89-93 (used to be in low 70, high 60s for years which sucked). But .. my LDH is VERY low. So not sure if that is relevant.
I have a very rare autoimmune disease that target GAD antibodies in the CNS and is known as Stiff Person Syndrome. I also have Celiac's. My doctors believed there was a chance that my Stiff Person Syndrome was being aggravated by ingesting gluten and the ongoing Celiac's. And fortunately I am one of the lucky ones where getting off all gluten seemed to slow progression. However not before massive damage was done to my body as my adrenal output went to nil (not just irregular cortisol but all other adrenal hormones), my reverse T3 was around 800, and I had lost 80 pounds. Norepinephrine and glutamate were out of control for many years and my sympathetic nervous system was on fire. I have no frame of reference to describe how bad 2008-2009 were. A neuroendocrinologist saved my life at the end of 2009 by intervening with hormonal support that at least put somewhat of a brake on the inferno of pain (note painkillers did zilch for me, not fun). But the SPS was not diagnosed until summer 2011, along with the Celiac's.
Currently I take supraphysiological doses of glucocorticoids, take Cytomel, DHEA, and some minor dose of Klonopin (0.4-0.5 mg)and baclofen (20-30 mg) to help with issues sleeping. By getting off the gluten and the glucocortiocoids I have managed to chop the GAD antibodies back in half (though measurement in the periphery is no guarantee of drop in the CNS, but clinical symptoms are MUCH better).
I have also been on some form of methylation for 2+ years now and some form of Krebs cycle support for about a year. Other big things that helped was going on Florinef last year (massive improvement) and more recently increasing Cytomel dose and adding adb12. Like I said since around the adb12 was added and some other changes, suddenly supplements that used to bother me like biotin, alpha lipoic acid, b1, and b5 now work well for me. Calcium also. Vitamin D is still a new frontier (I take 2500 IU per day, but my levels of the inactive form are low especially relative to the active form).
At this point my doctors and I believe I am winning the war on my autoimmune disease, but I am focusing on now fixing the collateral damage. The immune system seems to be in better balance and I have managed to reduce my glucocorticoids by about 25% with no apparent negative effects in the last couple of months.
One continuing concern is my inability to gain weight. I eat 4000 calories a day and my weight is at best 155 lbs on a 6'2" frame. I used to be about 190 lbs when I was healthy. When I lost my weight in 2008-2009 I was 120lbs for comparison. I eat 200+ grams of protein a day, 130+ grams of fat, and while not Atkins I get like 60-70 grams of carbs (just don't do well on starches).
Do you have Parkinson’s or any reason to think you are heading that way? Do you have chronic anxiety and/or panic attacks? OCD? Abnormal benzo effects sometimes called “tolerance withdrawal” specifically with Klonopin or Valium? Do you have any reason to suspect limbic circuit mood and personality responses are prominent? If you have ANY positive response to this 2nd portion of questions carnitine may hit like 100 tons of bricks. A person trying carnitine who has this situation, might want to start at 100mcg divided in 3 doses a day, and titrate most carefully.
What I get out of your paragraph is that the Deadlock quartet had you deadlocked on AdoCbl/l-carnitine. You clearly haven’t reached equilibrium or a dose of AdoCbl would have zero noticeable effects. I would suspect that l-carnitine may explain a lot and start with a kick you might not believe. This is where ATP startup, Krebs cycle, becomes a major situation. On the other hand it may make a huge difference but not a hyper effect.
No Parkinson's though low dopamine and serotonin are issues for me. For two years dopamine was so low, I was so restless could not sit, and had minor tremors. Going on bromcriptine helped but when real diagnosis came in, weaned off bromcriptine and focused on treating SPS. One theory with the dopamine and serotonin is due to low BH4 (before it was presumed to be low iron but that has been resolved, finally) based on neopterin / biopterin labs.
No chronic anxiety or panic attacks (though I was on the edge of that all the time in 2009 but even the docs said that was due to the pain (*shudder*)). I don't seem to have much issue with Klonopin, take only at bed time, small dose, started last Spring, titrated down to 0.4-0.5 mg from 1 mg. But not sure how easy it would be to get off, I don't make my own GABA very well.
What do you mean by "
suspect limbic circuit mood and personality responses are prominent"? Don't think I can answer that one yet. I will say in the past when I tried like 250 mg of carnitine I had really bad insomnia and some anxiety. But I have not tried it in 2 years. Everything I tried sucked badly 2 years ago and was unimaginably bad 4-5 years ago.
What would you suggest then for titrating the L-carnitine? Putting it in liquid and letting it dissolve and use an eye dropper? I suspect carnitine is important. The R-ALA 300 mg that I started taking last month was a big win. I also wonder if CoQ10 would be helpful. Used to take that also but caused me reflux all the time.
I have managed to string together about six continuous victories (increased T3, zinc carnosine, R-ALA, doubling vitamin E, increasing B1 + B5, biotin 200 mcg) in the last two months with supplements so I am probably due for a disaster lol
Before that adding in Adb12 (now 2.5 grams per day Source Natural) and switching from Jarrows B12 to Enzymatic Therapy B12 tabs were also beneficial (sigh they really messed up the Jarrows didn't they). But I also have to confess getting rid of TMG and SAMe was really important (those two were driving me to high NE states and OCD last spring, hence the klonopin I am stuck with at the moment). Those were the "peak" times when the potassium requirement flipped out of control (rode that wave for many months ... uggh), i.e. hypokalemia on 11 grams intake a day (gah!).
To review: currently I take 800 mcg methylfolate in one morning dose as FolaPro. I take 25 mg P5p as sublingual (source naturals). I take 2500 mcg methylb12 as Enzymatic Therapy and 2500 mcg Adb12 as Source Naturals. I take plenty of calcium and magnesium and intake of potassium is now 6-7 grams in food and supplements. One key thing is 1500 -2000 mg of sea salt a day. No TMG. Zero folic or folinic acid. No SAMe. Some vegetables but not nearly as much at the meat, nuts, etc. No starches. Low glycemic index.
Other supplements that may be of less interest: I take 2-3 grams of Na ascorbate per day. 2500 IU vitamin D. Not vitamin A (don't do well on that similar to D). One Iodoral to keep serum iodine up. 800 IU vitamin E. 15 grams D-ribose. 3 grams creatine pyruvate. 200 mcg selenium. 300-450 mcg molybdenum. 32 mg of zinc as zinc carnosine. 2000 mcg biotin, 100 mg b1, 100 mg B5, 100 mg B2, 500 mg B3, 300 mg R-ALA, some borage oil, no fish oil (messes me up inside). No copper (I get enough in nuts).
If you want I can send you a list of meds and supplements via a private communication. My intent is not to clutter this thread.
Anyways looking forward to your thoughts.
And thanks btw for the 1:1 ratio of meb12 and Adb12 and also the one hour time lag of b12 sublinguals to methylfolate. That has seemed to help also. Do note I only take one dose right now in the morning.