This might be asking too much (!), but have you compiled a list of symptoms that people have experienced from starting the Simplified protocol too fast...or of being too sensitive for the folate or b12 supps / detoxing too fast?
I've been experiencing a lot of itching / prickly feelings -- had it in the past -- but it's worse than ever lately, and some tingling that comes and goes -- and the main thing I'm doing differently is taking the methyl b12 and folapro. Plus taking some undernatured whey (but have taken that off and on regularily, with no trouble.
Also have that extra-wired, restless, but of course exhausted feeling...like others here.
thanks in advance,
ETA: I just read Janis' and Joey's posts about Dr. Vinitsky's variation on the b12/folate protocol, where he suggests that many of these 'negative' reactions may perhaps be reduced or eliminated by taking a 5mg drop of "Folarinse" dropped on 2mgs of Perque b12 (hydroxyb12). Do you know of anyone who's tried this?
sorry for all the questions...
The paste below is from a post I made on July 18, 2007. Maybe it will address your first question.
I have yet to take a good look at Dr. Vinitsky's approach, but I hope to do so after I have gotten a little more caught up with other things.
The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.
1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
3. Termination of excessive urination and night-time urination.
4. Restoration of normal body temperature from lower values.
5. Restoration of normal blood pressure from lower values.
6. Initiation of attack by immune system on longstanding infections.
7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of crashing.
8. Lifting of brain fog, increase in cognitive ability, return of memory.
9. Relief from hypoglycemia symptoms
10. Improvement in alcohol tolerance
11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
14. Return of ability to read and retain what has been read.
15. Return of ability to take a shower standing up.
16. Return of ability to sit up for long times.
17. Return of ability to drive for long distances.
18. Improved tolerance for heat.
18. Feeling unusually calm.
19. Feeling "more normal and part of the world."
20. Ability to stop steroid hormone support without experiencing problems from doing it.
21. Lowered sensation of being under stress.
22. Loss of excess weight.
The following reported symptoms, also gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:
1. Headaches, heavy head, heavy-feeling headaches
2. Alternated periods of mental fuzziness and greater mental clarity
3. Feeling muggy-headed or blah or sick in the morning
4. Transient malaise, flu-like symptoms
5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
8. Sensation of brain firing: bing, bong, bing, bong, brain moving very fast
9. Depression, feeling overwhelmed, strong emotions
10. Greater need for healing naps.
11. Swollen or painful lymph nodes
12. Mild fevers
13. Runny nose, low grade sniffles, sneezing, coughing
14. Sore throat
17. Increased perspiration, unusual smelling perspiration
18. Metallic taste in mouth
19. Transient nausea, sick to stomach
20. Abdominal cramping/pain
21. Increased bowel movements
22. Diarrhea, loose stools, urgency
23. Unusual color of stools, e.g. green
24. Temporarily increased urination
25. Transiently increased thirst
26. Clear urine
27. Unusual smelling urine
28. Transient increased muscle pain
Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and causeeffect relationships are difficult to determine exactly from the available information, Im hopeful that it will be helpful to clinicians and other PWCs:
1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . . This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest. This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.
2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.
3. A third person had a history of autoimmune disease, including Sjogrens syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc. She also experienced a severe flare of Sjogrens syndrome, with very dry mouth, dry eyes, and severe eye pain. Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.
4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with vomiting, vise-like headache, and shaking. She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogrens syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.