1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

L-Carnitine Fumarate

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Branston, Feb 27, 2013.

  1. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    Hi Xjhuez,

    That "anxiety" since it arises with 855mg of LCF and 250 of ALCAR, looks like botjh work for you, lucky on that. Now what this appears to mean tis that you had some not working very well, but not too badly either, mitochondria on certain parts of the brain, the limbic system to be precise, based on similar reactions from other people. As it is " slightly anxiogenic" the others who have had that effect and continued with it had it disappear in a few months. Be glad you are not having the jump out of your skin at 1mg hyper effect. My experience of healing CNS nerves is that you will feel them as they heal and they will cause all sorts of CNS moods and personaility things. It takes about 9 months typically after CNS healing noticably begins and is maintained for it to heal a substantial amount. The body progresses faster.

    Congratulations on getting that going. Now all you have to do is have patience and keep going until it fades away, and find other similarly positive things towards healing.
     
  2. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    Hi L'engle,

    I agree. When I went vegetarian I could feel the vitality (MeCbl and carnitine) draining from my body from the first day and continuing daily for years and had no idea what it was. After the fact I figued out the carnitine effect. In the "magical" Tantric meal in lifelong vegetarians they had large neurological and and energy changes in a few hours. The meal was beef-steak, fish, whole grains and other fruits and veggies fit for a feast. It supplied MeCbl, AdoCbl, L-methylfolate and carnitine (from the very common root of rein"carnation", carnitine, "carne" (beef). Carnitine is the essence of meat.

    I would expect that AdoCbl might make a substantial contribution to stamina, aerobicv capacity, regrowth of muscles if you have had atrophy and sleeping. Lacking AdoCbl alone can casue sleep problems as a variety of peole here have demonstrated by stopping just the AdoCbl.
     
    L'engle likes this.
  3. xjhuez

    xjhuez Senior Member

    Messages:
    175
    Likes:
    42
    I hope you're right. Sort of funny actually, since I've done just about everything short of lobotomy to try and stop anxiety and now I'm being told to embrace it.

    Ah well, seeing as source-less anxiety is a hallmark of my existence, at least I'll know where it's coming from now.
     
  4. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    Hi Xjhuez,

    Well, a lot depends on the anxiety being of the same casue of people with CFs/FMS/ME symptoms with anxiety. They have been universal in AdoCbl/LCF (which has more effect depends upon which was more deficienct as they both cause the same problem in the mitochondria, lack of Kerbs cycle and hence the same damage. It gets worse generally as one gets older. Lobotomy, now there are scary words with lots of hazard. When walking through hell, keep walking.
     
  5. Jorlev

    Jorlev

    Messages:
    66
    Likes:
    19
    With A1298C Homozygous, a low BH4 problem results in having pheynlalanine, peroxinitrite and ammonia buildup. In fact, I was speaking to a relative recently who said she remembers that as an infant I had to be on a "special diet." which didn't mean much at the the time but I came across info on Hyperphenylalninemia and it's severe form Phenylketonuria which requires a special diet for infants. Trying to get old birth hospital records to confirm.
    http://en.wikipedia.org/wiki/Hyperphenylalaninemia

    Anyway, I also just got results showing low Carnitine, which my Dr said could contribute to my small fiber neuropathy.
    Was wondering if supplementing with Carnitine (LCF, ALC or both) to help my SFN winds up producing more phenylalanine, peroxinitrite and ammonia which damages my small fibers. Or does the buildup of these occur only when meat is consumed and broken down not supplements. It may be mostly ammonia i'm referring to. Not sure if meat decomposition results in phenylalalnine or peroxinitrite increase or not.
     
  6. L'engle

    L'engle moderate ME

    Messages:
    966
    Likes:
    448
    Canada

    Thanks. I'll give the AdoCbl another go.
     
  7. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    HI L-engle.

    I would think that stopping l-carnitine first, waiting a few days and observe, then start taking the AdoCbl. As the AdoCbl gets into all the mitochondria, the ATP startup that might happen doesn't fade rapidly. So then after you have taken say a 2.5mg dose (1/4 of the Anabol capsule under the lip) and that pretty well gets things in place, a 500mcg daily sublingual dose, until adjested for best effect later, after other things are stable, would be good as anti-inflammatory dealing with the enite chain of inflammation. Then perhaps a very cautions microtitration to see how sensitive you now would be to LCF or ALCAR. Then if a very small dose is too much, we will know what we arre dealing with and can lower it to the edge. The downside of overkill LCF is even more brutal than the upside, so you might want to take waaay waaay waaay small doses and take any number per day needed to let you lower gently to the edge without a crash.
     
    L'engle likes this.
  8. beaker

    beaker CFS/ME 1986

    Messages:
    430
    Likes:
    662
    USA
    Wondering if there is a "cheat sheet" somewhere for the terms and supplements used in the methylation and Krebs etc... I cannot remember the abbreviations. heck i often don't remember the long form much of the time. I read and look back and forth googling trying to make sense and then my eyes cross, my brain goes and nothing is remembered. I end up skimming and hoping through osmosis some will go in. : /
    I surely can't be the only one on here who has trouble reading technical posts such as these.
    Maybe there is already a cheat sheet and I have missed it ?
    If so, please point the way.
    or if you know another place one could find one....

    Thank you for your understanding.
     
    caledonia, cph13 and Sea like this.
  9. caledonia

    caledonia

    Messages:
    3,039
    Likes:
    1,711
    Cincinnati, OH, USA
    Hi Freddd,
    I tried dividing it into 2 doses for a week, but didn't notice any difference. So I'm going back to one dose for simplicity.
     
  10. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    HI Caladonia,

    Have you tried an A-B with AlCAR alternating with LCF? If you notice a difference, then the timing pon the one that works best needs to be optimized. A lot of people have no problems with carnitine for whatever reasons. Also, if a person isn't taking AdoCbl first (within a month anyway) they may not have a response to carnitine if they can't utilize it. Also, Alpha Lipoic Acid can give a it boost sometimes.
     
  11. Linda828

    Linda828

    Messages:
    30
    Likes:
    14
    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.
    Is it known that Signa Tau is best from subjective experience, or is there some objectively verifiable reason? I buy L Carnitine Fumerate as a bulk pure powder, and have no idea where it was manufactured.. Generally I prefer to get vitamins in bulk powders when possible for both cost and lack of fillers, binders, flowing agents, etc. If there is good reason, to switch to Doctors Best or Jarrow, though, I would do so.

    I take a half teaspoon of bulk powder twice a day. Each half teaspoon is equivalent to 875 mg L- CF and yields 500 mg L-Carn. I don't notice a response to it, but take it on general principles.
     
  12. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    Hi Linda,

    The test is an A-B test. Try a known Sigma Tau LCF and then a separate trial of Sigma Tau ALCAR an then yours. Do the cyle for 5 days for each one. You will know if there is a difference. Usually with 4 hours but may take a few days depending upon your serum halflife and maybe other considerations. These are purely subjective ratings by a lot of people who notice a difference. It is the established reliablity of certain brands of items across the spectrum of people generally that has increased the response rate of various items to almost 100%. By response, I mean just that, whatever the person calls it and whether they reconize it or not as good or bad or peculliar. Accurate recognition of whatever that response is if repeated at each juncture, can lead to substantial healing. So far there is no surefire pathway defined. People need to do a lot of A-B trials to determine what works best for them. So LCF works better than ALCAR except when it is the other way around. Nobody at all has suggested a different brand works better, or even equal, than the Sigma Tau. You might be able to find out where they get the bulk.
     
    Linda828 likes this.
  13. Linda828

    Linda828

    Messages:
    30
    Likes:
    14
    HI Fred,
    I just called Beyond-A-Century where I get bulk powders and they said that their L-Carnitine Fumerate comes from China. So I will order the Drs Best brand and try the A-B trial you outlined. The quality of products coming out of Italy would likely be better than that coming from China. It would take an analytic lab to figure out why, but in the mean time, the subjective experience of many people is a fairly reliable guide.
    Blessings
    Linda
     
  14. Jorlev

    Jorlev

    Messages:
    66
    Likes:
    19
    Anyone know if A1298C-Ho is associated with low Carnitine production? IF so, how?
     
  15. yvetta

    yvetta

    Messages:
    2
    Likes:
    0
    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
     
  16. kraken

    kraken

    Messages:
    57
    Likes:
    3
    Hello,

    For the first time, I tried a very small dose of Doctor´s best L-carnitine fumarate in addition to my methylation which I've recently started again (now covering all supplements for deadlock quartet). It was about 200 mg corresponding to about 115 mg of carnitine. Intended to start very slow as I've heard people getting all kind of reactions to this.

    Well, first of it gave me a huge increase in energy/mood lift, felt more alive with all my senses but then some pretty bad anxiety creeped, sort of crashed. Social anxiety increased quite a bit for the rest of the day whereas before I've been doing pretty good. Managed to calm down by having a couple of beers though. Just wondering how I should progress and if anyone else felt this? Looking from the answers in this thread this seems to be an indication of something that needs to be taken care of. Didn't think I would react like this to such a small dose.
     
  17. Freddd

    Freddd Senior Member

    Messages:
    4,577
    Likes:
    957
    Salt Lake City
    HI Kraken,

    Actually the really hyper sensitive is somebody reacts that way or more to 1mg or less. So actually yours is not an unreasonable response. The change from energetic to anxiety appears similar to other such sequences I have seen in many people. My experience is to divide the daily dose in three to even out the serum level. A 33mg dose might not even be perceived or might feel like a small boost in awareness and energy. Repeating each 8 hours or so can keep it relatively level. When I tried 125mg to start with it was very powerful. However, I never had the downside experience. Others have avoided it by dividing the dose. In less than a year I was up to a full 500mg dose and the neurological and muscles layers and recovery from my heart and shed 45 pounds of water, all recovered and my muscles rebuilt and it was the final building block in bring the neurological brightness fully up to normal. You are hot on the trail. Fortunately LCF is easily dose proportionate. If needed you can take it down to just below perception and move it up a little every day or week and achieve the same thing. Try the 3 doses a day. It has worked well for others. The Jarrow Liquid Carnitine lets you measure it out with precision. One drop is 33mg If I remember correctly but I would need to recalc that. Also, depending upon how much healing started will determine if more potassium and Metafolin might be needed. Isn't it great to feel alive again? These unpleasant aspects appear to be from limbic damage from the deficiency that appears to heal over time and would be expected to have MMA in their CSF.
     
    Last edited: Aug 1, 2014
  18. kraken

    kraken

    Messages:
    57
    Likes:
    3
    @Freddd, thanks for the answer and very happy to hear your success story, such an inspiration. As for my experience, it truly felt amazing at first, random sensations popped up which reminded me of my early youth but then I got way tense. Actually havn't felt that tense in a long time but yeah on the other hand, a hint of beeing really alive indeed. Dividing the doses in 3 feels like a good approach, think I might start with that and see how things progress. That liquid carnitine sounds easy to use but I bought the capsules, luckly I have a scale at home so it wont be a problem.
     
  19. whodathunkit

    whodathunkit Senior Member

    Messages:
    440
    Likes:
    267
    @kraken, I had a pretty intense initial response to LCF, too. It was months before I could take more than 250mg/day. I just divided a capsule of the Doctor's best. More than that made me speedy/anxious, etc. But now I'm up to 1000mg/day. It's one of my favorite supps. I plan to take it for the rest of my life. Hang in there! :)
     
  20. kraken

    kraken

    Messages:
    57
    Likes:
    3
    @whodathunkit, I see, very encouraging, nice to hear you´re doing good with it! I really hope it turns out to be one of those missing elements I need. Will definitely continue taking it even though there may be some discomfort. So you´re not feeling any kind of anxiety with your 1000mg dose as of now? Whats the effects like? Plain energy?
     

See more popular forum discussions.

Share This Page