The best carnitines seem to be those manufactured by Sigma Tau in Italy. Jarrow and Drs Best and maybe other brands are made by Sigma Tau. A person that has a strong response to one form may not have any response at all to mixed carnitines or other forms. A person needs to do an A-B set of trials to determine what they respond to best. Also needed are AdoCbl for best effectiveness and for at least some, biotin. People that respond well to ALCAR often don't respond to other forms and those that respond to LCF often don't respond to other forms. Why it happens this way I do not have any idea, just that it is pragmatically so on a percentage basis.
Hello Fredd,
First, let me thank you for your very informative posts. I wish to share with you some of my struggles and get your input so maybe I can be of some help to you and to others as well. I am compound hetero C677T/ A1298C from a recent LabCorp test and I am waiting for 24andme results as well as Yasko's Genomic panel. My disease started in 2002, quite severe as encephalitis and went undiagnosed until year 2004 as Lyme disease. Until year 2012, I tried to eradicate Lyme and many co-infections with antibiotics The herxes to any ABX treatment landed me in a hospital and an ER multiple times. I always sensed that there must be a reason why I am being hit so hard and why in the world I can not detox. I tried everything to detox. Better. I was taking fat binders ( for the neurotoxins, per Shoemaker’s protocol), enemas, colonics, Infrared sauna, IV vit C, IV glutathione....and still can not detox enough. Today I have POTS, Hashimoto’s, losing weight ( or/and inability to gain), unable to function, infections going off the scale and autoimmune inflammation. I am living in constant pain.
I started the Rich VK simplified protocol last year prior to my testing and prior to enough knowledge of MTHFR.
Among others, I have huge dental problems, the Lyme and co-infections got into my jaws and teeth, even pulling some teeth didn't resolve the pain. My health deteriorated very rapidly after I had a bone graft put in one of these sites to prep it for future implants. The inflammation was so bad I reluctantly took 5 days of steroid to calm it down. It never has been the same since with regard to the pain level and especially the heart palpitations which started immediately after this surgery.
After that I started the Rich VK protocol - the original one:
2.5 mg Methylcobalamin inj. every other day, or every third day
1/4 Folapro
PS twice a day
5-P-5 50 mg twice a day
I also started to use so a Doug coil machine for the infections (with success especially after the methyl support I did. The herxes were manageable though sauna, green juices and cholestramine) Through all of this the green juices somewhat made my pains and brain fog diminish. I think I detoxed better but am confused about using green juice now due to the folate issue. I didn’t know about my MTHFR issues when I was juicing herxes away.
After a month or so I switched to oral support
Methyl life supplements ( B- Methylated) I found online ( sublingual combination of 3,75 mg methyl B12 and 3.75mg L-5 MTHF Tetrahydrofolate)
and added 1 pill a day/ or every second day of Methyl support which includes many other Bs and DMG ( all together I took maybe 20 pills)
Pros;
- after 2 months: gained so much needed weight about 16 pounds ( I was 103 pounds and 5'8") to 119 pounds. I never had such a rapid weight gain
- was able to increase the "coiling" time, meaning killing off the infections
-POTS virtually disappeared, making me think that infections esp. Bartonella and Mycoplasma were and are the culprits to some extent
Neg;
developed acne ( cheilitis) in my face. Today I read it might be due to insufficient active Folate and the competition between the various forms. That did not stop me with continuing since the pros outweighed the cons.
I ordered the 2,5 mg of Methycobalamin again and started it but at the same time, I ran out of Folapro for about a week. After the third shoot everything changed. Pretty much after 30 min or so, I froze literally. It was like someone cut my circulation to some minimal level, the pains all over the body were escalating, my thyroid started to hurt and swelled. I had TPO antibodies (around 30) and a small nodule on my thyroid ever since the onset of "Lyme." My TSH used to be 1.5, two years later 2.3, two years later 2.9 and now is 3.3 and the TPO is 90 per testing after the last shot of B12.
I was, and still am, cold all of the time, esp. the extremities, to the point that my skin on my fingers wrinkled. I started to have active demyelization, even takink a shower was and is painful. I started to lose weight again, I’ve been dehydrated constantly, requiring IV fluids. In some very recent research I found that potassium could be the culprit and had that tested and got confusing results. I will include my blood tests at the bottom. My thyroid needs help, since it hurts and the numbers are worrisome. I have all of the symptoms of Hypothyroidism except the weight gain, which is confusing because I am slowly losing weight again.
I ordered some tests through Yasko (Amino Acid, OAT, MAP etc) and will know in a week.
I also started a low sulfa diet (due to suspected CBS gene issue), ordered some organ support like ORA- Adrenal and taking GABA, Smart Youthful Energy for the phospholipids. I have a bottle of LDN (low dose Naltrexone in front of me) and am debating what to do. While it is very promising for Hashi, which seems to be my big problem, it isn't favored in the Yasko protocol because it supposedly to interferes with Dopamine production. Gaba is taken for raising dopamine levels but appears to have done nothing for me. On the other hand, LDN for Lyme, might be a great help. I do believe that my Hashi is caused by Lyme or co-infections. It appears that I am dealing with many Catch 22s.
MY blood tests:
B12 serum: 1989 ( 211- 946)
Folate serum: >19.9 ( >3.0) in February, later in March upon low folate diet > 16.8 ( >3.) and the RBC Folate is >619 ng/ml where reference interval is not established ( what in the world, Why not?)
Homocysteine Plasma: 5.0 ( 0.0 -15)
MMA serum; 98 ( 73- 376)
TSH : 3.300 ( 0.450- 4.500)
FreeT3: 2.8 ( 2.0- 4.4)
FreeT4: 1.15 ( 0.82- 1.77)
TPO Peroxidase: 83 ( 0- 34)
Antithyroglobulin: <20 ( 0- 40)
DHEA serum
Carnitine Free: 26 ( 25-30 umol/L)
Carnitine Total: 33 (34- 86 umol/L)
Carnitine Esterified: 7 (5-29 umol/L)
Carnitine Esterified/Free Ratio :0.3 ( 0.1- 1.0umol/L)
Potassium serum: 4 mmol/L (3.5-5.2)
RBC Potassium: 90ug/g (70-90)
Copper Serum: 725 (810- 1990)
Copper RBC : 0.66ug/g (0.52- 0.80)
Zinc Serum: 77ug/dl ( 56-134)
Zinc RBC:12.5 ug/g (8.6-14.5)
Litium : < 0.1 ( 0.5-1.5)
The problem seems to be functional as the folate as well as the B12 are leaking out of the cells. Per Yasko, it could be due to low Lithium which I am deficient in.
Potassium which tends to run low when especially methyl B12 is intoduced is even more puzzling. I have low potassium in Serum, but my RBCs are packed with potassium ( 95% of body potassium resides in RBC). I am worried to supplement this one, since at this point I am losing sodium so quickly, that I need to drink salt to keep somewhat hydrated. My urine output is big and I keep getting/ or being dehydrated most of the time. It is the worst after sleeping and not drinking through the night. My body isn't using and retaining the potassium. Why? I suspect that aldosterone is involved.
Certainly the thyroid, esp. adrenals (Aldosterone), regulates the sodium/potassium balance. Is it due to my adrenals and Hashimoto’s worsening after severe detox on Methyl B12 or is it a functional deficiency? If yes, what is the best way to correct it? Would LDN be helpful in this complicated picture where we are dealing with muscle-wasting, Lyme and co-infections, compound hetero (C677T/ A1298C), Hashimoto, adrenal fatique? It appears that treatment of one of these issues undermines the correcting of the rest, and vice versa.
I am not supplementing any form of B12 or Folapro for two months now and don't know how to start doing something. I mentioned looking at the bottle of LDN and wondering if a way to start is to calm down the inflammation raging trough my body? At this point I am not sure if I am an undermethylator or overmethylator – there is symptom evidence for both. Is ATP production very compromised? How do I correct it? I feel like my body is juiced out. Compound hetero blood tests are not reliable per Lynch website. Any help or opinion anyone?
Any input would be appreciated?
Yvetta