Dreambirdie
work in progress
- Messages
- 5,569
- Location
- N. California
thanks Sushi and Jen
That was helpful. I am sure I will have more questions as I proceed.
That was helpful. I am sure I will have more questions as I proceed.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
In fact, if you would like to make up a listing of all the startup symptoms you and others experienced, which ones are dangerous rather than unpleasant or miserable, and why they are dangerous, I would incorporate them into a much larger compsite list contributed to by all interested. In the marking of dangerous, if it isn't something like BP that is known dangerous, please include links to articles and/or specify that it is based on a theoretical or hypothetical concern.
As this entire b12 and/or methylation treatment of all varieties, active, inactive or whatever,is still in the theoretical or hypothetical basis stage with various degrees of demonstration which is not proof, and we are all still trying to figure it out, in giving guidence we need make it as clear and easy for people as we can.
FREDDD--
We have already listed our adverse effects for you. Please take them SERIOUSLY.
YAY! I am SO GLAD to hear you FINALLY acknowledge this.
Just to throw more ingredients into this bubbling pot, here is a link to Dr. Mark Hyman's blog entry on methylation:
http://www.ultrawellness.com/blog/m...ail&utm_source=newsletter&utm_content=default
Enjoy!
Sushi
YAY! I am SO GLAD to hear you FINALLY acknowledge this
[/COLOR]
And I don't think that you anywhere actually state what is actually dangerous, and why, as opposed to uncomfortable or miserable. I don't have the same assumptions you do so listing a few buzzwords and expecting me, or a lot of others to understand why they indicate life damaging or threatening dangers dosen't work.
Understanding often requires a negotiation of meaning.
Hi, all.
Jenbooks mentioned that there had been some adverse effects in some of the people who tried the simplified treatment approach for lifting the methylation cycle block. This occurred a little over two years ago. I have followed these people since then to see how they have been doing. Here is a summary:
In a post of July 18, 2007, I described all of them of whom I was aware, which numbered five women.
The first had had a history of autonomous multinodular goiter. On this
treatment, her thyroid gland swelled further, obstructing her breathing. Since
then, she has had surgery to remove the rest of her enlarged thyroid. Last May she was preparing to order the Vitamin Diagnostics methylation pathways panel to test her methylation status, but I have not heard whether she completed that, and if so, how it came out.
The second person experienced initial improvement on this treatment, and was able to ride a bicycle after having been homebound for ten years. However, she then developed a fever, shortness of breath, and severe chest and arm pain. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has continued to have a fever for over two years, and her doctors have not been able to determine its cause or to correct it. Antibiotic treatment has not helped. Some time ago I suggested testing for Babesia, but I don't know if that was done.
The third person had a diagnosis of fibromyalgia and a history of autoimmune
diseases. She had not (and has not since) been diagnosed as having CFS, for
which this treatment was actually designed. I have never recommended it for
fibromyalgia without CFS, because I have not had a theoretical biochemical basis for doing so. She developed autoimmune scleritis while on this treatment, and was treated with topical steroids. She had a number of visits to her doctors to take care of a flare in her autoimmune disorders. Since then she has started to use low-dose naltrexone, and this has been a big help to control her pain.
Two other persons experienced ileus (cessation of peristalsis of the gut) for 12 days after starting this treatment. Both resumed the treatment later, after
their peristalsis restarted. One wrote me recently that this protocol had
helped her more than any other. However, she has diastolic dysfunction and has reported being "toward end-stage M.E."
The other person later learned that she had mold illness, and has reported that mold avoidance and treatment for mold toxins (cholestyramine), together with the methylation treatment, have restored her to complete health, so long as she maintains avoidance of exposure to mold. She reported recently that she continues to take vitamin C, cholestyramine, and three of the supplements in the methylation protocol, because continuing to detox is lowering her sensitivity to mold.
So that's the current status, to my knowledge, of those who had adverse effects. As jenbooks mentioned, these adverse effects came as a surprise to me, and I was quite chagrined about them. What I learned from this was that we have a very heterogeneous population in these internet groups. People can have a variety of comorbidities (i.e. other conditions along with CFS). One size does not fit all. If a person decides on their own to do a treatment, all the important factors may not be considered. I now think that it is very important that a physician be working with a person while on this type of treatment, to make sure it is appropriate for them and to catch any adverse effects that might occur.
I certainly didn't (and don't) want to harm anyone, and I'm sure that others here feel the same. The whole goal is to help people, not hurt them. I was trying to develop an inexpensive, simple treatment that would work for as many people as possible. I think I partially accomplished that, but I learned some things. One is that each person is unique, and they each need personal attention from a knowledgeable healthcare provider while on treatment. Another is that depending on the particular case, they are likely to need additional treatments to deal with some of the other aspects that have accumulated, such as certain infections and toxins, as well as some of the factors that led to their illness initially, such as mold avoidance, stress reduction, attention to food allergies and sensitivities, and other factors.
It hasn't turned out to be as simple as I had hoped, but I think we are making progress. I have actually heard from many more people who have been helped by this treatment than from people who had adverse effects, and I'm happy that this has been the case, but am still concerned for those who had adverse effects, whether they were due to the treatment, or to aspects of their cases, or both. I'd like to see everyone recover their health!
Best regards,
Rich
In regards to what is productive or unproductive, I do think it's exceedingly important to clarify that some of the side effects folks so willingly posted were indeed serious and maybe dangerous. When you put a protocol out there, you are taking on a serious responsibility, even on the internet. You don't want to be practicing medicine without a license or advising people how much to take. You can only really responsibly say, "This is what I did." Without testing you can't prove that anything is startup or not. It takes courage to put the protocol out there when nobody asked, BUT there is a danger of overstating it, ignoring risks, or in wanting to help or answer questions, inadvertantly taking on the role of medical practitioner.
So it needs to be clarified and thoughtfully. So I myself find the thread productive.
In regards to what is productive or unproductive, I do think it's exceedingly important to clarify that some of the side effects folks so willingly posted were indeed serious and maybe dangerous. When you put a protocol out there, you are taking on a serious responsibility, even on the internet. You don't want to be practicing medicine without a license or advising people how much to take. You can only really responsibly say, "This is what I did." Without testing you can't prove that anything is startup or not. It takes courage to put the protocol out there when nobody asked, BUT there is a danger of overstating it, ignoring risks, or in wanting to help or answer questions, inadvertantly taking on the role of medical practitioner.
So it needs to be clarified and thoughtfully. So I myself find the thread productive.
who says so ?
law says he cant take money for it .. but advising anything to anyone including medicine is not forbitten by law ..
and i m glad it isnt because i need this knowlagde here ..
and if ur above order were also laws order ( or sociaties general judgment ) it would be impossible to get such kind of help online ( and jody, this was my point and unfortunatly still is )
Freddd, certain phrases enter the vernacular as somewhat global generic terms that are apparently supposed to indicate that a specific biological process is underway that is defined and understood....
startup dieoff herxheimer
When you say startup I take you to mean, "symptoms that occur in the process of healing the organism with the necessary b12's." Am I wrong?
In fact we don't know biologically what is going on in each person as we all have polymorphisms, different reserves of vitamins minerals and cofactors, different pathogens onboard, different lifestyles and interventions we're using etc.
Therefore I think it is important to say, "There are risks with this therapy and some people have experienced what may be serious or dangerous side-effects." IE they are not all part of a medical trajectory of healing. They may just be side-effects. Some people may actually get ill from methylb12, plain and simple. May not need it. It may push systems past breaking point. It may trigger heavy metal detox. It may stimulate resident pathogens to multiply. Who the heck knows? We're very complex and so is the interaction between our immune system and the environment.