If Fredd's protocol healed HIM, and Dr. Rich and others have been successful with it as well, why are we not hearing more hope and healthy anticipation about it throughout this site?
It is the same protocol but that was only a snapshot in time. No one is taking B Right anymore because it contains folic acid, for instance. I did not follow the pack on the choice of a replacement so I cannot say what they settled on. I believe a number of the supplements have changed, the one for aB12 also. Maybe Idie or Mogy would know.
I am wondering how specifically, in your case, did your symptoms worsen -- or could you describe specifically happened?
When several of us would mention increased neuropathy, he would describe that (I think) as nerves 'waking up' or coming back to life. But he came from kind of a coma-like state, where as many of us are coming from a 'wired-but-tired' situation, common with ME/CFS. I felt like I was losing nerve function or like my myelin was disintegrating (as the neuropathy got worse), rather than a rebuilding type thing.
One of my major symptoms were electric sensations,twitching and buzzing in my nerves throughout body, and most intense in spine and brain regions.Initially when I started the protocol with mb12, the sensations intensified. Now one can perceive that as getting worse or as Freddd mentions, nerves 'waking up'. I agree that he came from a coma like state, and many of us from a wired but tired situation. But I perceive that wired but tired state also characteristic of neurological malfunctioning. My symptoms did get worse, lasted for about two months and then the intensity of that startup was significantly reduced. Then I added adb12 to the protocol and the symptoms worsened even more, indicating adb12 deficiency. Then when I got a bit comfortable with the adb12 titration, I added Acetyl L Carnitine to the protocol(ALCAR). ALCAR totally blew me out, and this was just a few days back. ALCAR has made my symptoms increase tenfold as compared to the mb12 startup response.I almost felt psychotic the first time I took ALCAR. I had to and am still titrating it very carefully. Freddd mentions that a hyper response indicates extreme deficiency. Even though I feel terrible and this is the reason I think many don't continue with this protocol. I suspect myself to fall into the adb12/carnitine hypersensitive category,with cord,brain issues with little body involvement. I also have the anxiety characteristic as a base mental condition and exhibit a number of psychiatric symptoms.
This thing you mention, losing nerve function or myelin disintegration. I understand what you're saying. But can't THIS be the rebuilding process?
I am trying to see all these horrible effects in a positive light. My own experience and understanding of this is as follows:
- initially,mb12 produced startup at affected neurological regions
- b-complex,potassium and folate added to protocol
- startup intense for the first two months
- added other vitamins, some co-factors
- adb12, and l-carnitine produced more intense startup at affected neurological regions.
- reassessed folate and potassium intake, had to increase both.
with adb12 and carnitine,experienced startup at more regions, which were thought to be not affected. I perceive this as increased sensitivity. I have increased pain and sensations at many more places in my body now.Maybe they were already there and I have gained the ability to sense them. Increased pain sensitivity has been mentioned by Freddd, I think. Or maybe the supplements start working at affected neurological regions, and the initial process is very uncomforable. My hands go numb now,and they have never gone numb before. My mental state is also much more agitated. This signifies the initial response, which is a hyper response. ATP startup,methylation, whatever processes are there, they must have finally started working after months/years of being dead. I have the same doubt with the worsening,but if you read carefully what Freddd has said in his last threads (see most recent threads and contents on his profile), you will gather that this is actually a positive sign. The HYPERSENSITIVITY IDENTIFIED thread is very useful if you read word by word carefully.
I would like to know what does Freddd mean by 'neurological brightening'. Is it worsening of symptoms from an increased nervous system sensitivity viewpoint, or is it healing of thse symptoms?
Also,I know the feeling/sensations of myelin disintegration. Now what I feel is even worse than those sensations. If this is a healing/startup response, it is surely worse and much more painful. No pain,no gain theory?
Maybe this is the essence of Freddd's protocol? One has to pass through this darkest night to reach the dawn?
Worsening indicates extreme deficiency and maybe they get better over time,if one has the ability to continue with the protocol? The worsening takes away most of the motivation,right?
I need the courage to endure these crashes.
I'm trying my best to stick to the protocol by titrating the dosages.
Freddd, you are needed here on these forums.
Yeah, I don't know what the answer is, but most docs who are familiar with ME/CFS and also autism, recommend starting with microscopic doses. and slowly working up. Vitamins, etc., need minerals to function properly, and on other threads there have been suggestions that minerals such as manganese (for example) may be deficient in some folks, and/or may become depleted if one takes too much b12 or folate, etc. Also, B2, which works with both folate and b12, may also be depleted.
I found I couldn't tolerate b6 at all -- I would get almost instant neuropathy/tingling -- every single time I took even a tiny dose. That finally resolved after I added b2...and showed that I wasn't deficient in b6, but needed the cofactor.
Also, it's interesting that Fred note angular chelitis as a symptom of folate deficiency, which it can be, but it is most often associated with a B2/riboflavin deficiency.
I'm glad to see this poll here, though disappointed to see no takers on filling it out... That is my big question regarding Fredd's protocol and it's success. I am eagerly anticipating getting my labwork together and getting started on the protocol myself, but I am surprised and confused to feel the consensus throughout the site as that of underlying hopelessness for a lasting cure. If Fredd's protocol healed HIM, and Dr. Rich and others have been successful with it as well, why are we not hearing more hope and healthy anticipation about it throughout this site?