@Misfit Toy - Don't give up hope! I understand feeling that way from time to time though. I'm really sorry to hear how badly you did on IVIG. Did your doctors have any idea what might have caused it and did they understand how sick you were feeling while you were on it? Five months seems way too long to be suffering with those symptoms. I thought if a patient didn't start feeling even a little better after a month or two that doctors would either suspect it's not going to help or consider a different dose, but I am not familiar with IVIG. I'm curious about what caused your bad experience.
Since they typically give anti-histimines and NSAIDs to reduce reactions to IVIG, is there any chance you were reacting to those also?
I began crashing after dental surgeries in August and September with increasing neuropathic and other symptoms, and increased fatigue that have only gotten worse. I've needed a lot of dental surgeries and this has been a pattern for several years, but I've been unable to identify what in particular is causing it. It could be the anesthetic or NSAIDs or amoxicillin or probiotic/high glutamic/high histamine foods I took afterward, or a combination. I know that glutamic acid is highly toxic to my nervous system. I was considering seeing a mast cell specialist but then decided on seeing a new neurologist instead. They are in the same city out of state, but I didn't think I would be able to get authorization to see both, so made a choice. Maybe that is something you would want to consider? There are not many who sub-specialize in this area so that can present a challenge.
What reactions do you get to narcotics? I've experienced cardiotoxic hypotension following the use of several medications at one time, but as usual, was unable to identify exactly which or what combination was causing it because the second time it happened didn't involve dental anesthetic, unlike the first and third times. Codeine pain killers have made me vomit, but I'm not sure if I reacted to them in that way every time because I was prescribed them so infrequently. I believe at least one of the hypotensive episodes involved a codeine pain killer.
I react badly to some Bs, especially high dose. I've been feeling more tired and depressed since trying higher doses of active forms of B12 and methylfolate/folinic, so I may have to abandon that experiment. I also tried a lipophilic B formula recently and felt much worse after half a dose. I continued experimenting with it in smaller doses and also a lipophilic C and I think I react badly to both, but especially the Bs. It looks like the "lipo" portion of it, which is choline, might be the problem, but I've taken pure choline and not reacted badly.
I have been trying LDN in divided doses throughout the day instead of one dose at night, and have not had any increase problems with sleep - I still wake at least once. In fact I didn't have typical problems with sleep even when I started it at night, but increased nervous system symptoms. I don't know if I'm undermining its potential good effects by taking it the way I am but I need to do everything possible to preserve sleep and avoid nervous system stimulation, and I've read that some other people take it during the day also. I have been trying it for nearly 2 months, with a small break, and never experienced any good rebound effects that are supposed to occur following the initial opioid-inhibiting effect.
The reason I started trying LDN is that a friend of mine who developed ME with migraines has had great success using it - turned his life around, but his symptoms had not been as long-standing as mine and he had a classic response to the LDN, which seems to bode well for it working as it should.
Do you have any EMF sensitivities? Computer use? I have to limit mine because my nervous system gets buzzier and I feel sicker the longer I use it.
I always have low level infections.
I have had a chronic upper respiratory infection for 10 years that has thinned out the mucus and left the inside of my nose and pharynx raw and now bleeding again, and damaged my voice. I'm constantly getting swelling, redness and pain in my nail folds where they're chipping and cracking, and I've had symptoms of a chronic heart or pericardial infection for 10 years. (Problem: conventional medicine tends to recognize "post-infection" at most) That and the sinus were both acute together when they first began. Cardiologists have been between unhelpful and abominable and I stopped going to them, but when symptoms worsened again recently my doctor gave me a very specific referral that makes it clear what he is to evaluate me for, and it has to do with the history of infection. So that is another thing I have to look forward to - with mixed expectations.
