Pre-Lyme Treatment (Week 3 Day 4)

Everything is still going pretty well. I'm doing 4ME and the VSL#3 probiotics daily, and the creon 150 digestive enzymes with every meal. HydroxoB12 is twice per week, and still hurts like a bastard every time :( Still not taking Glucagon, and will probably stop the liposomal Vitamin C since the soy in it still makes me swell up every time. I'll go back to a normal buffered vitamin C instead.

Getting the refills was pretty easy. I had a prescription for two months, so the pharmacist did approximately a two-week supply at first, to make sure I was tolerating every thing and would continue taking it. So they've given us the remaining 6-week supply now, though the B12 isn't in yet. Hopefully it is by Tuesday, because that's when I should be torturing myself with it again :rolleyes:

I also noticed that my insurance is covering the creon 150 digestive enzymes automatically, even though the prescription is from a foreign doctor. The pharmacy items which aren't being covered are ones either not available at all in the Netherlands (high dose B12 injections) or not covered by the health insurance in general (the probiotics).

I've also got big boxes of syringes and two types of needles now - 100 of each, which is more than enough. I just need more needles for the intramuscular B12 injections. I also ordered another month's worth of the 4ME, since I'm tolerating it and it seems to be helping. That's expensive (270 euros) and they don't notify me when it gets shipped, but it's arrived without any problems and pretty fast both times - within a week of placing the order.

The 4ME isn't causing much of a reaction anymore. It still stings a bit going on, but doesn't get all red, inflamed, and hot. Just slightly warm and pink and sore now. I think the 4ME might be helping quite a bit with something. I've had less swelling in general, and my swollen right tonsil has been much less swollen lately. The naughty tonsil no longer has rotting stuff getting stuck in it which needs to be cleaned out every couple days :D My fiance has also noticed huge improvements in my cognitive functioning, though that mostly goes away if I crash.

I'm slowly making progress getting some disability-related things taken care of - a wheelchair and a disabled parking permit are both in the works. I've posted more about that in the relevant subforum.

Comments

Nice to hear you are making progress!
Are you taking any methylfolate and other methyldonors with the hydroxyB12?
I'm also on the hydroxyb12 shots twice weekly and am wondering if i should add some 5-mthf because i'm heterozygous for all MTHFR snp's according to 23andme / geneticgenie.
 
be careful with high dose vitamin C and late stage lyme disease its benefit can become contridicted in some cases and make people worse.. Though I do not know the reason why there is some case studies that show this! I hope you are healing well! :)
 
I just take a single normal dose of vitamin C per day. I've never been able to tolerate high doses.
 
Ahh then you'll be fine :) That is also a really good idea! Liposomal vitamin C is the best kind! I used Dr. Mercolas before but indeed much cheaper to make on your own.. Some people also mention that high vitamin C foods are actually more bio available too, so you could eat two oranges a day and do very well with that too!
 
I don't think eating 2 oranges a day is similar.....you get very little vitamin C in comparison and will get a lot of sugar. the doctor who is overseeing my infusions here in reno is considered a vitamin C guru of sorts and says liposomal vitamin C is a very good idea.
 
so I have been trying to make my own lip-c and it is not as easy as it looks on the youtube videos (it also tastes REALLY bad). I found this new website with a slightly different recipe: www.qualityliposomalc.com.......i am going to try now with ascorbic acid instead of sodium ascorbate. the sodium ascorbate is better because we are already too acidic with the CFS....but I just am not sure if it's working. I would like to try that alcohol recipe but we aren't supposed to have alcohol. I may try that anyway.
 

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