These are the products I've been using.
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Chronic Lyme Disease & Disulferam. My Medical Log.
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Posted this in the DSF group, with pictures of the above products:
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You guys helped me so much when I first started this journey. Thank you! I hope this can be helpful to someone new who is coming in. My dose is still low, but so far, these are the products I'm using. I put this group of products together from the suggestions in this facebook group and from disulfiram.net . So far it's working. Note that other people here have had success with other products, too, so this is not the only list of choices, but hopefully it provides at least one viable choice for basic needs.
Regarding food: I have got myself a crock pot, and I cut up meat, vegetables (specifically leafy ones like broccili and spinach) and potatoes (both sweet and normal) - and put them all together into the pot, with a bit of salt and tumeric. I am not bloated in the slightest after eating this meal. The good thing about this meal is I can put sauce or something else on it for my husband, whereas I can eat mine plain - so he has a good "normal person's" meal which can have some variety, and I don't need to cook twice. He also has been making huge omelettes for us both, with the aforementioned vegetables, potatoes, etc --- so that is also a good meal to know about, which allows for some variety, as you can add all the necessary veggies to your omelettes. In addition, we go on amazon to find low-acid coffee, and we mix 1/2 caffeine and 1/2 decaf, sometimes different brands. And I've been drinking lots of water. So far these meals give me no bloating.
I'll update on my progress and additional food & product ideas as my dose increases.
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I went to work today for the first time since the holidays. I didn't feel wiped out afterwards! And my voice was louder so I was actually able to talk with my coworkers for extended periods. I am tired now, which is something I should mention - I've been really, really tired at night. This is good because I sleep well but not normal for me; usually I don't get tired as in "I could sleep forever!" despite that when I'm sick, I'm "kind of wiped out" all day, and confused and non functional.
My concentration is definitely better with editing. And I get surges of energy like, "I want to work out!" I will start soon; I just haven't had a surge like this when it was actually possible to work out due to other things on my schedule.
So I'm not sure where this is headed.
Also, I've been eating out, and just asking them to not include vinegar. I haven't had any problems as long as I avoid straight up alcohol and vinegar, so far.
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Today, after working four hours yesterday, I'm coughing and my voice is quieter. I really can't handle the dust there. I'm miserable to say this but I might have to quit my job due to the damage it does to my breathing, my voice .... fucking allergies.
This is unrelated to DSF though. But the Lyme really caused serious allergies which may now have developed to the point where curing the lyme won't cure the allergies.
>.<
Also, today, everything is loud. My hyperacusis is really loud but I'm also kind of deaf, having trouble distinguishing sounds. This happened yesterday too at work. Fuck. This may be about the DSF or the Lyme, and I hope it's just a herxeimer and will go away
I've had hyperacusis for a really long time but never the part where I'm "also deaf" and when people talk I can't understand them. My father got deafer and deafer this way, from really bad tinnitus, so I'm pretty nervous. But it has only been happening for two days. I don't hear tinnitus sounds per se but it's like my whole head has a bubble in it that needs to pop. (Yet I'm not stuffy in my nose.)
I also got a minor stomach ache from mcdonalds last night. Yeah, I know, Mcdonalds was overkill. I have to do better. :P . But now I won't press my luck with that again. Damage was very minor though, and my stomach is fine now, but my head and chest is not.
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I'm not sure. I might. If I decide that I absolutely must quit (I really don't want to) .. I'm going to see if I can get a part time job elsewhere, maybe a restaurant, where there won't be dust and I don't have to eat the food I'm allergic to - and I'd make more money anyway. I'll see though. I might have to go on disability but I really don't want to =[
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We had mcdonalds not because we wanted to, but because after work I was too exhausted to go and pick up home food, and Daeva was working late, and nothing else was open on a Sunday. But now I know I won't resort to this no matter what. (And will plan better.)
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There's a lot I need to log here but I'll be brief. Some points:
HEALTH
- Two days ago I got on the elliptical and I ran for an hour and a half, only taking two short breaks. This is remarkable since I haven't exercised at all in years due to illness - but now I had so much energy from this medicine that I suddenly went for an hour and a half!!! The only thing that 'went wrong' is my leg hurt a tiny bit the next morning. :O
- At night I'm exhausted and fall asleep quickly. My energy during the day ranges from adequate to excellent.
- Only one nightmare so far. (Usually I have them often.)
- I ran out of meds for Babesia, the illness that makes me short of breath. For 3 days I took no meds and had no problem breathing. I can feel it starting to catch up now but it's much more minimal compared to before. I will do one more course of this medication and then see if I can live without it. The Disulferam does seem to be hitting the Babesia and improving it already!
- Hair loss was astronomical before. It continued to be, but it is FINALLY slowing down. I'm surprised I have any left on my head.
- My voice improves when I don't go to work, but work is a huge setback due to all the dust. I really don't want to quit however. I'll see if there's some way to modify this.
FOOD & PRODUCTS
- We go out to eat. I have pizza and other crap when it's late and it's necessary. I do whatever I want except I tell waitors to withhold any vinegar and alcohol. I am still using the same products that I bought, and refraining from using soap in public restrooms etc, but I'm hardly doing anything to modify my diet except asking for no alcohol no vinegar.
- The only food I reacted to so far is coca cola. I felt a little woozy, as if I'd had about 2 full alcoholic drinks, after having about 3 sips of coca cola.
- I was starving all the time when I started the med. Now I have a healthy appetite.
- The toothpaste sucks so I'll try Tom's and hope for the best.
DOSE
- I'm at 1 pill, 62.5 mg, every other day.
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