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HYPERSENSITIVITY IDENTIFIED

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
As I have been saying there are 4 specific b12 and cofactor deficiencies. I have pinned down one of them that hadnt been identified before as a separate thing.

This specific pattern, of neurological mitochondria shutdown, has some specific characteristics. There is an extreme hypersensitivity to adenosylb12 and/or l-carnitine fumarate and sometimes methylfolate if the person converts to adb12 well enough. The first one in may have no effect or may be hyper responsive. The second one taken often causes a huge response. So, in one case, l-carnitine fumarate, perhaps 50mg, as first taken, has no effect. A week later after that was out of the system, adenosylb12 was taken and had no effect and was established. After a few day of adenosylb12 the response to < 1mg of l-Carnitine fumarate is out of this world intense. After that an increase in methylb12 is also extreme, but not the nominal 500mcg already established as that is rolled into the l-carnitine response. So we see the dependence of the nerves on adb12-LCF activating the mitochondria in order to have a response to mb12. The specific mix of these responses depends on the person being extremely deficient of all 3 items in the CNS. The person however didnt have the symptoms of stalled methylation that one often sees in the epithelial tissues of the body. Body does not have much in the way of symptoms compared to the neurological and neuro-psyc. It is mostly neurological.

The mood characteristics show a great deal of anxiety as a base condition. Sudden emotional changes or storms, can look bipolar. Sudden rage, panic attacks etc all are very much worsened by adb12, mb12, LCF once the mutual dependencies are no longer blocking each other. Often risk sports or pseudo risk entertainments, roller coasters, bungee jumping, parachute jumping, fast boats, fast cars, fast anything are too much and too scary. OCD or elements of it may be present. These have to do typically with neural dopamine processing. These symptoms, as well as others including certain neuromuscular, may be present or caused or worsened by benzo usage, especially in those who are experiencing what is commonly called tolerance withdrawal which appears to be more a late or slow onset side effect. There are a lot more characteristics to really pin it down. However, those just clarify how it manifests. Low dopamine symptoms have to appear for Parkinsons to be diagnosed. Recent research has shown that Parkinsons has low CSF cobalamin, elevated CSF MMA and hypothesis that 20 years or more of damage from mal or non functioning neural mitochondria causes Parkinsons and here we have damaged neurons from low adb12-LCF and the beginning of the emotional/personality characteristics often found in Parkinsons (or some forms of Parkinsons) from these damaged neurons. The question comes down to:
HOW SOON BEFORE PARKINSONS DIAGNOSIS CAN CORRECTING THE DEFICIENCIES CORRECT THE DAMAGE AND/OR PREVENT MORE DAMAGE?

Most of these neuro-psyc symptoms appear to be linked to limbic system damage. The hypothesis is that 20 years or more of neurological damage from non-functioning neuro-mitochondria with low CSF cobalamin and elevated CSF MMA (non-functioning mitochondria by virtue of CSF adenosylb12/l-carnitine-fumarate deficiency as indicated by elevated CSF MMA) which has these symptoms is Parkinsons disease. Furthermore, Parkinsons disease is associated with limbic system damage.

It is these extreme deficiencies that appear to damage the neurons and causes the extreme hyper responsiveness. A micro titration of mb12, adb12 and l-carnitine fumarate can build the levels up, eventually to levels that according to the Japanese studies, up-regulates neurological healing. As the damaged neurons are reactivated they are extremely irritable and there is an increase in symptoms. Tapering the benzos may be helpful for turning down the secondary low dopamine symptoms. The benzos can cause a change in the dopamine receptors which appears to cause these Parkinsons type symptoms when a person has the adb12/carnitine deficiency damaged neurons.
This one subgroup, with hypersensitivity to at least adenosylb12 and/or l
carnitine fumarate and possibly mb12, with lots of anxiety, possibly with emotional outbursts, possible instant rage or killing rage, OCD or OCD like, doesn't get a thrill from thrilling activities, fear instead. Then adb12, mb12 or l-carnitine fumarate can, in tiny quantities trigger any or all in succession of the emotional responses. Also, benzos are frequently prescribed for the deficiency symptoms, and when the dose is large enough, it has an effect on the dopamine receptors causing the above emotional responses which are mostly part of the "Parkinson's personality" and in benzo-board lingo is "tolerance withdrawal" rather than "late onset side effects". Tolerance withdrawal is a far scarier term than "side effects". This deficiency appears to damage the limbic system. Then, when the neurons that are now hypersensitive are exposed to anything that starts them producing ATP and transmitting signals they have painfully intense responses, just as different damage can produce intense pain or bodywide pain sensitivity. When looking up the limbic system the disease mentioned that is at least in part caused by damage to the limbic system specifically is Parkinson's.

It appears that the damage appears to keep increasing for years and years until it becomes PARKINSONS, ALS, MS, SUPRA NUCLEAR PALSY and ALZHEIMERS, probably depending upon the exact mix of deficiencies, the exact neurological areas damaged or other factors. Until methylb12, adenosylb12 and l-carnitine fumarate are all brought up to the level that prevents further damage and then to a level that can heal the damage if possible, it is likely that the damage just keeps on going.

This specific aspect is not a methylation problem but that may also be a cofactor. This can be limited to the brain and cord with little or no body involvement. Hydroxycbl does not replace the adnenosylb12 but some people can convert the methylb12 to adenosylb12 to some extent. Further the double or triple deficiency with the l-carnitine fumarate and mb12 assures that no single substance can repair this. It HAS to be a complicated (many substances) protocol with careful titration.

If a person is going to heal from this, assuming that is even possible, its only going to happen with the Active B12 Protocol. That a person can take hydroxcbl for years and it never touches it should be ample demonstration that it doesnt work as it is easily demonstrated that adb12, mb12 and l-carnitine fumarate plus cofactors starts working in minutes to hours. The extreme response demonstrates the extreme deficiency and resulting damage.

A few people taking this from the b12 deficiency end of things who performed some of the titrations of adb12 of injections from 1 to 25mg or so and various ratios of adb12:mb12 discovered this increase in irritability. This irritability is at the heart of the Mr. Hyde transformation in b12 deficiency (mb12 fades first and fastest) and an overbalance of adb12 to mb12 which occasionally shows up when adb12 injections are in the 10-25mg range. Is this an early Parkinsons indicator? With only 2 people doing this series and only 1 person experiencing the mood/personality change, and others having exactly the opposite effect with high oral doses of both adb12 and LCF.

Im still working out the details. I will have a micro-titration set of instructions posted shortly. And of course everybody is free to choose whatever hypothesis they want to work from.

Choosing a strategy

1 Avoiding everything that attempts to restore the neurons and mitochondria to a non-deficient state as that is too irritating and anxiety provoking. Unfortunately that appears unlikely to change the course of the disease progression.
2 Rapid titration of the obviously active and effective substances to limit the number of days that have to be endured until the neuron startup effects are over. This will allow the doses to climb towards those needed to allow the body to restore the nervous system to normality (hopefully) with the up-regulated neurological healing the Japanese research speaks of. The accepted therapy doses of l-carnitine for restoration from technical deficiency is 3,000mg IV. A daily oral dose of l-carnitine in the 1000mg range is a quite normal supplement dose. Higher doses restores normality quicker or so goes the theories and actual results with all the items shown to have dose related effects produces more rapid and/or complete healing. LOTS OF UNKNOWNS.
3 Slow titration of all the active and effective substances bringing them all into balance at each level before increasing to the next step. It may take a year to get the levels up to the usually effective healing levels which may or may not slow down healing. By slow titration the length of onset may be an entire year or more. Feathering it to get things increasing enough to give some adaptation, healing and recovery of function without making it intolerable is not always possible to do when the difference between tolerable results and intolerable may come down to a difference of 10mcg of LCF. LOTS OF UNKNOWNS,


UNKNOWNS:

1 Can the damage be reversed
2 How many years of damage can be reversed
3 Can damage be stopped from proceeding all the way to Parkinsons (MS, ALS, Alzheimers, SNP etc)
4 How to reverse the damage and prevent it from continuing.

Step right up and place your bets ladies and gentlemen, who is going to get sicker and who is going to heal? For that matter who can heal? Who hasnt yet crossed the line of no return into outright irreversible neurological disease. My experience with Subacute Combined Degeneration is that it can be partially reversed and many of the symptoms alleviated and progression very much slowed down. So in SACD some of the demyelization lesions do heal, just as they can in MS. As the limbic system becomes hyper irritable it seems reasonable to expect the same kind of lesions there and to expect them to heal in the same way requiring the same cofactors. We are all in the same boat much more so than many think. We just each are sitting by a different set of leaks.
 

Enid

Senior Member
Messages
3,309
Location
UK
Very interesting as always Fredd though the Scientists here will understand more. I've seen l-carnitine recomended in a protocol before. My own Docs considered demyelisation and MS/Parkinsons etc. but neither have developed - in fact cognitive and mobility issues ease from early severe days so hopefully some healing taking place. (oh and I did have "high spots" on the MRI brain scan but unlike the bad old days memory/recall vocabulary and more clarity in thought processes returns).
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I got some surprises from a person I walked through this process of getting established on the active b12 protocol. The main one is the hypersensitivity in the brain to extremely low doses despite hypothecized as being in a group with low CSF cobalamin level. Also, the focus on l-carnitine fumarate with hyper-responsiveness was a surprise.

She started at gross doses of a combined adb12/mb12 of about 100mcg. Also about 200mcg of Metafolin. These combined b12 crumbs dissolve and go away very quickly so I doubt very much was absorbed. In any case, there was zero response to this initially. At day 10, with an estimated combined dose of 50mcg absorbed the first awareness of the mb12 "brightness" was just barely noticed. Prior to taking any b12 a dose of about 60mg of L-carnitine was tried with zero effect. After a couple days the combined b12s were first tried. There was no carnitine left in the body and no effect from the b12s. On day 12 she suddenly felt very ill. It was a combined potassium and metafolin induced deficienciencies. Potassium was titrated from 700mg to 2100mg before comfort was achieved. Metafolin was titrated from 200mcg to 1600mcg. On day 15 carnitine was added. An intial dose of 10mg ended up being way too much and produced unceasing intolerable anxiety and panic and intensification of other aspects of the "Parkinson's personality" , as the mitochondria appeared to start working in the damaged area. 36 hours later she crashed off the LCF into severe depression and fatigue, anger, and murderous rage. The next day we restarted the carnitine at 0.1mg (estimated). It caused minor intensification of anxiety mostly. After a few days of LCF, increasing gradually to 0.15mg the potassium and Metafolin had to be adjusted upwards to a total of 2400mcg of Metafolin and 2500mg of potassium. There were a few pretty good part days and some bad days. After a month now at 0.25mg daily of LCF in 2 doses. She is pretty stable. The two doses prevent an afternoon "minicrash" every afternoon. At 30 days real improvement is starting to be evident, comfort is ok, mood is improving and all of the limbic symptoms are stable at the moment.

Having worked out some of the "how to" procedures, I suspect stability can be achieved in 2-3 weeks if one can proceed to the "first noticable dose" somewhat faster and start low enough on the carnitine.

The symptoms reshuffle every day and gradually there is a trend towards less severity and even some hours of joy.

So as of now that is what I know and have observed in this. At this point she appears to be following the normal course of healing and improvement normally seen in those who achieve a stable startup. As the healing response startup occurred concurrently with the mb12 brightening they appear closely linked. It appeared with the usual flags of a suddenly increased need for potassium and Metafolin. The Metafolin leveled out at the level typical of somebody without paradoxical folate deficiency. The potassium leveled out in the middle of the range typical of somebody healing. The titration of the b12s and LCF continues in an orderly fashion in small increments below the level of kicking off an unpleasant experience. Stop and start makes the reactions worse. Instead a decrease to aq dose that doesn't trigger reaction is needed and then gradual titration from there.



The whole question now is how much improvement will we see? We are starting with a person who can barely cope with bathing, can't cook, drive, or even go to the mailbox on many days and has difficulty with social interactions and can barely swallow to eat (neurotoxin damage decades ago).

From my experience on this I'm thinking that it might best be done in a residential program because of the tricky CUSTOM titrations as well as the extremity of the responses to very slightly too large doses that they need somebody to see them through those days.


I can also see how b12 anorexia can kick in here via lack of appetite without nausea or with nausea. Also avoiding the b12 and carnitine containing foods "feels" better, less anxiety and fear ("bad karma/vibes from beef") which of course worsens the problem in a spiral down.

In this case glutathione "detox" reaction produced terrible illness that ended in the ER. She wasn't folate deficient prior to that and so felt the effects immediately as well as lowering the already low b12 below survival level making her terribly ill, just like some people get from nitrous oxide getting rid of the mb12 in the brain..
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
We are starting with a person who can barely cope with bathing, can't cook, drive, or even go to the mailbox on many days and has difficulty with social interactions and can barely swallow to eat (neurotoxin damage decades ago).

I was in that situation a few years ago and didn't take any supplements at all because didn't know what was happening to me and to weak to find out :(
Then a chiropracter adviced me to take ubiquinol. A few months later I started the cyano12 injections (not a big success) and later the hydroxy12 injections. Maybe Q10 can do the trick for her too?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I was in that situation a few years ago and didn't take any supplements at all because didn't know what was happening to me and to weak to find out :(
Then a chiropracter adviced me to take ubiquinol. A few months later I started the cyano12 injections (not a big success) and later the hydroxy12 injections. Maybe Q10 can do the trick for her too?

Hi Marlene,

I am happy to report today that yesterday was the best day she has had in years. The microtitration is working very well. I don't know if you have seen the cautions mentioned in terms of the active b12 startup, but my experience and that of some others is that CoQ10 taken early in the active b12 healing can cause very high blood pressure. On the active b12s, she is up to 2.5mg of adb12 daily, from a tiny crumb 35 days ago, and as of today is doing 1mg of mb12, also started from a tiny crumb 35 days ago. The accelerator is being controled by the l-carnitine fumarate. It might be another month for her to get up to 1mg. She had previous received injections of methylb12 which were totally ineffective without the adenosylb12 and LCF. These things are all closely interactive.

Have you had the hypersensitive responses to the supplements and the symptoms I'm talking about and healed from them? What was your experience and what was effective at healing you and getting rid of all the problems? How log did it take? Were you on benzos with "tolerance withdrawal" or late inset side effects as described? There are a lot of variables here and a lot of pinning down still do do. I'm getting the spreadsheet ready for use in defining the symptoms and such for people to detail this. Thankyo.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Hi Marlene,

I am happy to report today that yesterday was the best day she has had in years. The microtitration is working very well. I don't know if you have seen the cautions mentioned in terms of the active b12 startup, but my experience and that of some others is that CoQ10 taken early in the active b12 healing can cause very high blood pressure. On the active b12s, she is up to 2.5mg of adb12 daily, from a tiny crumb 35 days ago, and as of today is doing 1mg of mb12, also started from a tiny crumb 35 days ago. The accelerator is being controled by the l-carnitine fumarate. It might be another month for her to get up to 1mg. She had previous received injections of methylb12 which were totally ineffective without the adenosylb12 and LCF. These things are all closely interactive.

Have you had the hypersensitive responses to the supplements and the symptoms I'm talking about and healed from them? What was your experience and what was effective at healing you and getting rid of all the problems? How log did it take? Were you on benzos with "tolerance withdrawal" or late inset side effects as described? There are a lot of variables here and a lot of pinning down still do do. I'm getting the spreadsheet ready for use in defining the symptoms and such for people to detail this. Thankyo.

I have a very low bloodpressure since my childhood and severe dysautonomia at the time I was completely bedridden (and nearly dead). I could only whisper a few words a day, spent 14 months alone in a room and was fed and washed by my mother as a baby. (I was 38.)

The results of my methylation cycle arrived just a few days ago and I ordered the list of supplements you advice. No idea how to use them to be honest.
http://forums.phoenixrising.me/show...ylation-organic-acids-and-sulphur-metabolites
I never took any benzos in my life. When I tried an antidepressant to sleep, I had to cut the pill in 8 and it knocked me out for 20 hours.

What has brought me back to life was without any doubt the weekly sessions of neural therapy and low dose naltrexone. It was a very tough ride but I'm a different person now. Nevertheless, I'm still very limited and through analysis of my lab results I figured out it had something to do with B12 and that's how I ended up here. I sincerely hope it is the beginning of the end of the suffering.
 

Pea

Senior Member
Messages
124
Fredd, my friend who doesn't react to large doses of much of anything, had a strong reaction to the carnitines. He actually gets really tired. One time he was taking this Holistic Health spray & the mechanism broke so he 'dribbled' it in, but there was not much left in the bottle so I think he got a huge dose, and he was very very tired, but happy, almost giddy, for a day.

What would this reaction mean?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd, my friend who doesn't react to large doses of much of anything, had a strong reaction to the carnitines. He actually gets really tired. One time he was taking this Holistic Health spray & the mechanism broke so he 'dribbled' it in, but there was not much left in the bottle so I think he got a huge dose, and he was very very tired, but happy, almost giddy, for a day.

What would this reaction mean?

HI Pea,

I've seen this occur with the carnitine. Carnitine is one cog in the wheel and it's lack can hold up a whol lot of things. It can casue nerves to start working better. Which ones getting going determines what it feels like. Some are pleasant, some very unpleasant, some "tired" some wired and some both. The exact mix probably will tell us a lot but the descriptive matrix I have is still very sparse.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
And NOW for another hyper-sensitive response on this delicate titration.


Initial responses in order tried for maximum information.

  1. L-carnitine fumarate, initially no response at all
  2. 2 days later, Crumbs of mb12 and adb12, titrating over 10 days to about 50mcg each absorbed with 200mcg of Metafolin. Healing startup requiring titrated potassium and Metafolin
  3. Hypersensitive response to L-carnitine fumarate at approx 0.1mg, need titrate potassium and Metafolin with increased healing triggered.
  4. Increased response to mb12
  5. Hypersensitive response to TMG, estimated 1-10mg, vastly increased response to mb12 necessitating reduction.

All of the various supplements trigger various limbic mood and personality symptoms. It's a matter of keeping them down to an endurable level.

As I have hypothesized the distinctions are additional deficiencies. In this case the mitochondria are double inhibited by lacking adb12 AND l-carnitine fumarate. Further the methylation and perhaps other mb12 functionality is double inhibited by mb12 deficiency AND TMG (or other major methyl donor hyppothesized) deficiency. So the CNS shutdown of afflicted neurons.

If TMG had been done first it likely would have had no response but the mb12 would have become hyper. If L-carnitine fumarate had been done first (and maintained rather than allowed to drain away) then adb12 would have become hyper. Having these double deficiencies on both pathways might be a signature for much worsened damage.
 
Messages
12
My symptoms are mainly neurological, I haven't been diagnosed with CFS/ME but I've suffered from brain fog, generalised anxiety and fatigue for as long as I can remember (i'm 23). I've been doing mb12, methylfolate for a few months and experienced lots of encouraging signs of healing. More recently I added adb12, 10000mcg once every 3 days, and as of last week I introduced l-carnitine fumarate as well. Yesterday for the first time I took 1000mg LCF and sublingual adb12 within an hour of each other. Later in the day I had a severe feeling of overwhelm (I work in a shop, was serving customers for 8 hours straight) and pretty much had an emotional breakdown at work, which is not like me usually - although I experience anxiety around people as one of my symptoms, I can usually contain it. I went to bed feeling a sense of despair and woke up feeling the same way. Now I'm wondering -- could the combination of LCF + adb12 in a short space of time have caused me to react this way??? It didn't feel rational at all, even though I was in a stressful situation - my reaction was way disproportionate.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My symptoms are mainly neurological, I haven't been diagnosed with CFS/ME but I've suffered from brain fog, generalised anxiety and fatigue for as long as I can remember (i'm 23). I've been doing mb12, methylfolate for a few months and experienced lots of encouraging signs of healing. More recently I added adb12, 10000mcg once every 3 days, and as of last week I introduced l-carnitine fumarate as well. Yesterday for the first time I took 1000mg LCF and sublingual adb12 within an hour of each other. Later in the day I had a severe feeling of overwhelm (I work in a shop, was serving customers for 8 hours straight) and pretty much had an emotional breakdown at work, which is not like me usually - although I experience anxiety around people as one of my symptoms, I can usually contain it. I went to bed feeling a sense of despair and woke up feeling the same way. Now I'm wondering -- could the combination of LCF + adb12 in a short space of time have caused me to react this way??? It didn't feel rational at all, even though I was in a stressful situation - my reaction was way disproportionate.


Hi Daisychain,

You have been hit by a double deficiency. FOr the mitochondria to work, you need both adb12 and l-carnitine fumarate. The LCF transports the fats that the adb12 then processes yielding ATP (energy) for thye body and brain. When the deficiency is in the brain, and that's what your reaction indicates, the results can be very hyperactive. The LCF starts wearing off after 24 hours and by 36 hours is pretty much gone. However, the crash from the LCF can be depression and/or anger, often in the same order each time. You need to titrate the LCF, starting with just enough to keep you from sinking way back and not so much as to trigger the anxiety. I would suggest that you try maybe 1/16 of the capsule, perhaps32 or 64 mg and see how that is. Jarrow has a liquid carnitine, about $13, that can allow easy and precise titration. YOu may want to do that sometime during the morning or earluy afternoon to avoid the crash that may happen as the LCF bottoms out. The other things are fine for now. The catch is theLCRF can trigger a new round of healing in many and that may cuase a need for more potassium and possibly Metafolin too, so watch for that. The trick is to get it smoothed out. You will be fine if you can find the "comfort zone" on the LCF. With as strong a response as you have to the carnitine clearly a lot of things were not happening because of it's lack. When we identify the dose that works but not too much (the Goldilocks dose), then you can titrate back up. Sometimes in coming up from the underneath one needs to take a second small dose and that tends to level out the afternoon drop.

You can make it through this and will feel better once it is adjusted. Thjat was an excellent response, just too much at once. You may also have very strong responses to TMG and/or SAM-e so let's leave those on the shelf a while until you get stable on the LCF, and then a slow titration with TMG.

I don't know where this set of CNS effects from low carnitine and/or low adb12 comes on the ME-CFS-FMS spectrum but perhaps a quarter or so of the people here demonstrate it. Rich would be the best one to ask about where in the spectrum your symptoms fit. WIth the low carnitine in you CNS at least Rich would likely say that there is a partial methylation block. There are also non-functioning neural mitochondria in your brain at least by your responses so it certainly seems like you are in the right place. I'm not all that great at subdividing these variations to the various names that go with each subset.
 

kday

Senior Member
Messages
369
Freddd,

I have much of what you described in your first post. The constant anxiety, the benzo tolerance withdrawl, OCD, rage, panic attacks, etc. I used to love thrill sports. I am in my 20's, and rollercoasters, boating, etc is too much for me. I took out my Dad's Waverunners with some friends this weekend. Driving them was anything but enjoyable. Driving a car is not enjoyable. Many days I can't drive (depending on how I feel).

It would be nice if these activities could be enjoyable once again. I don't have sensitivities to large doses B12 or folate. I have taken Acetyl-L-Carnitine in the past without noticing benefit. I haven't tried L-Carnitine fumarate. Do you think this could be of more benefit than the Acetyl-L-Carnitine?

I notice most effect from methyl B12. In fact, so much, that I don't think I could live without it. I go through periods where I don't feel like I need it, and then periods where I have to take 25,000 mcg daily. It is very calming to my nervous system.

I'm at a point where I am about to self-medicate with Alzheimer's drugs (specifically Namenda) to see if it can turn down the voltage a little more. I really don't want more drugs in my system, but at the same time, I don't know what more I can do to stop what it feels like neurodegeneration. I want to live life.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd,

I have much of what you described in your first post. The constant anxiety, the benzo tolerance withdrawl, OCD, rage, panic attacks, etc. I used to love thrill sports. I am in my 20's, and rollercoasters, boating, etc is too much for me. I took out my Dad's Waverunners with some friends this weekend. Driving them was anything but enjoyable. Driving a car is not enjoyable. Many days I can't drive (depending on how I feel).

It would be nice if these activities could be enjoyable once again. I don't have sensitivities to large doses B12 or folate. I have taken Acetyl-L-Carnitine in the past without noticing benefit. I haven't tried L-Carnitine fumarate. Do you think this could be of more benefit than the Acetyl-L-Carnitine?

I notice most effect from methyl B12. In fact, so much, that I don't think I could live without it. I go through periods where I don't feel like I need it, and then periods where I have to take 25,000 mcg daily. It is very calming to my nervous system.

I'm at a point where I am about to self-medicate with Alzheimer's drugs (specifically Namenda) to see if it can turn down the voltage a little more. I really don't want more drugs in my system, but at the same time, I don't know what more I can do to stop what it feels like neurodegeneration. I want to live life.

Hi Kday,

For many peple Acetyl l-carnitine doesn't do anything and l-carnitine fumarate makes all the difference in the world. It sure was like that for me. Even a blend of carnitines were a complete zero for me, only the one kind worked. If you would like to go over your program and make adjustments trying to make it effective, I need you to copy the list of symptoms, mark "yes" by each symptom you have or had as child in the "as child" section and "not any more" or "sometimes". The colors make the answers stand out so I can see them easily. Then post it to a private conversation to me. That will give me a better profile of you. Also include at the bottom other symptoms you hacve that are not on the list. Also list all the supplements and amounts and how taken, (with food, without food etc).

to see if it can turn down the voltage a little more

can you tell me what this means?
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
I got some surprises from a person I walked through this process of getting established on the active b12 protocol. The main one is the hypersensitivity in the brain to extremely low doses despite hypothecized as being in a group with low CSF cobalamin level. Also, the focus on l-carnitine fumarate with hyper-responsiveness was a surprise.

She started at gross doses of a combined adb12/mb12 of about 100mcg. Also about 200mcg of Metafolin. These combined b12 crumbs dissolve and go away very quickly so I doubt very much was absorbed. In any case, there was zero response to this initially. At day 10, with an estimated combined dose of 50mcg absorbed the first awareness of the mb12 "brightness" was just barely noticed. Prior to taking any b12 a dose of about 60mg of L-carnitine was tried with zero effect. After a couple days the combined b12s were first tried. There was no carnitine left in the body and no effect from the b12s. On day 12 she suddenly felt very ill. It was a combined potassium and metafolin induced deficienciencies. Potassium was titrated from 700mg to 2100mg before comfort was achieved. Metafolin was titrated from 200mcg to 1600mcg. On day 15 carnitine was added. An intial dose of 10mg ended up being way too much and produced unceasing intolerable anxiety and panic and intensification of other aspects of the "Parkinson's personality" , as the mitochondria appeared to start working in the damaged area. 36 hours later she crashed off the LCF into severe depression and fatigue, anger, and murderous rage. The next day we restarted the carnitine at 0.1mg (estimated). It caused minor intensification of anxiety mostly. After a few days of LCF, increasing gradually to 0.15mg the potassium and Metafolin had to be adjusted upwards to a total of 2400mcg of Metafolin and 2500mg of potassium. There were a few pretty good part days and some bad days. After a month now at 0.25mg daily of LCF in 2 doses. She is pretty stable. The two doses prevent an afternoon "minicrash" every afternoon. At 30 days real improvement is starting to be evident, comfort is ok, mood is improving and all of the limbic symptoms are stable at the moment.

Having worked out some of the "how to" procedures, I suspect stability can be achieved in 2-3 weeks if one can proceed to the "first noticable dose" somewhat faster and start low enough on the carnitine.

The symptoms reshuffle every day and gradually there is a trend towards less severity and even some hours of joy.

So as of now that is what I know and have observed in this. At this point she appears to be following the normal course of healing and improvement normally seen in those who achieve a stable startup. As the healing response startup occurred concurrently with the mb12 brightening they appear closely linked. It appeared with the usual flags of a suddenly increased need for potassium and Metafolin. The Metafolin leveled out at the level typical of somebody without paradoxical folate deficiency. The potassium leveled out in the middle of the range typical of somebody healing. The titration of the b12s and LCF continues in an orderly fashion in small increments below the level of kicking off an unpleasant experience. Stop and start makes the reactions worse. Instead a decrease to aq dose that doesn't trigger reaction is needed and then gradual titration from there.


Hello Freddd

As mentioned in another thread I hyper react to the start up protocol. I feel a bit lost because my mind cannot chew the information. Do you have something like:
Week 1:
Week 2:
when you feel X, take more Z
or when you feel ok, go to step 4

instead a lap of text? I'm unable to dissect the protocols when they are mixed in stories or texts.

You advised me to split up the B12 doses in 3 but I don't see how I can split up a crumb (1/10) of a tablet in 3. I probably misunderstood with my foggy brain.
 
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Hi Freddd,

It's really interesting what you say about Parkinson's - my brother has it and just told me he's got similar parasthesia problems in his feet as I had so I've been wondering if any of his symptoms might be B12-responsive. I have CFS and hypothyroidism and have got a lot of benefit from your protocol (on the wrongdiagnosis forum) in fact it saved my life. Can you say something about the steps my brother might try? I realise this might be off-topic for the forum, so please PM me if you prefer.
 

Freddd

Senior Member
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5,184
Location
Salt Lake City
Hello Freddd

As mentioned in another thread I hyper react to the start up protocol. I feel a bit lost because my mind cannot chew the information. Do you have something like:
Week 1:
Week 2:
when you feel X, take more Z
or when you feel ok, go to step 4

instead a lap of text? I'm unable to dissect the protocols when they are mixed in stories or texts.

You advised me to split up the B12 doses in 3 but I don't see how I can split up a crumb (1/10) of a tablet in 3. I probably misunderstood with my foggy brain.

HI Marlene,

I'm trying to simplify and convert a list of items to a protocol. The problem is that everything is by criteria, looking for certain things to happen, or not happen, and then taking the next steps based on that. I am seting it up in steps. Also, I am preparing the email list for the questionaire, which is now ready. The exact version of things a person does will depend upon how they respond to various things.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd,

It's really interesting what you say about Parkinson's - my brother has it and just told me he's got similar parasthesia problems in his feet as I had so I've been wondering if any of his symptoms might be B12-responsive. I have CFS and hypothyroidism and have got a lot of benefit from your protocol (on the wrongdiagnosis forum) in fact it saved my life. Can you say something about the steps my brother might try? I realise this might be off-topic for the forum, so please PM me if you prefer.

Hi Lilian,

Research indicates some linkages. People's responses indicate the same linkages from a different direction. The question arises then "at what point does the damage cease beinbg b12 & carnitine deficiencies and become Parkinson's and how much of that damage is healable?"

I believe that most of his symptoms will be responsive to b12 and cofactors, in fact hypersensitive. A careful titration can get a person through that and into the area they can start correcting whatever is correctable. Before I could really say much on your borther I would need him to fill out a questionaire that I have just prepared by sending me his email in a private conversation. I am optimistic that he could receive some benefit and hopefully stop further degeneration of the nervous system. This is all bleeding edge and based on my hypothesis so no guarantees are even possible. The problems with b12 and cofactors appear to be largely hereditary.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
just read the first part of this. today I cant stay focused on task so I only read a few paragraphs and it got my limited attention span. I was told to start L-carnitine free form 1500mg (it also has Panthothenic Acid (10mg). I have to go back and ck but I think I started notice rage/anger increase with in days(? could be one day could be 3 I dont recall), also my brain fog (not the brain stupor histamine sensation I sometimes get) but a, I dont even know how to describe it, cant stay on task, cant think of the next task, my brain feels heavy (does that make any sese at all?) not clear thinking, memory probs (had that before the lcarn). I was also asked to start Arginine, Lipoic Acid and Fish Oil at the same time as lcarn along with what I was taking. All I can say is brain not working well and moods much darker, quick eruptions at things that should be minor (not being able to open a medicine bottle cap, someone saying a word), anxiety. I was just wondering to myself if some of the new supps can alter mood???