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Chronic Lyme Disease & Disulferam. My Medical Log.

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    Chronic Lyme Disease & Disulferam. My Medical Log.

    Along with tens of thousands, perhaps millions, of others - I have suffered Chronic Lyme which has been impossible to cure. For decades I've been unable to live anything close to a normal life. Though medications have helped me with basic functioning, none last - and I cannot manage to stay off medicine without bad results.

    Much to my relief, I discovered over the past year or two that doctors were using Disulferam to cure Lyme, and it was working! Disulferam is the generic name for Antabuse, a drug which has been used to help alcholics stop drinking. The drug causes an adverse reaction if the person taking it also drinks alcohol.

    To quote one website:

    Disulfiram plus alcohol, even small amounts, produce flushing, throbbing in head and neck, throbbing headache, respiratory difficulty, nausea, copious vomiting, sweating, thirst, chest pain, palpitation, dyspnea, hyperventilation, tachycardia, hypotension, syncope, marked uneasiness, weakness, vertigo, blurred vision, and confusion. In severe reactions there may be respiratory depression, cardiovascular collapse, arrhythmias, myocardial infarction, acute congestive heart failure, unconsciousness, convulsions, and death.
    Sounds fun!

    Naturally this forces alcoholics to avoid drinking, even a little. The drug stays in one's system for 14 days, so consuming any alcohol in that time is unappealing. On top of that, there is alcohol in shampoo, conditioner, soap, dish soap, laundry detergent and household products. All of this must be avoided!

    Recently, Lyme doctors discovered that Disulferam works not only for Lyme, but for tick born illnesses, such as Babesia, Bartinella and more. Patients who took Disulferam for a few months never had any more symptoms even after suffering for years!

    There is a series of videos about it, starting here, with part 1 of 5. The rest are linked in the video's description.



    I've been backed into a corner with my Lyme treatment, and at this point, Disulferam is my only hope. There's still a chance I could be allergic - which could mean severe reactions - and the medicine would be in my system for 14 days! So it's pretty scary, but I need to give it a shot. On top of that I'd like to avoid the unpleasant reactions listed above.

    I absolutely hate logging my day to day choices, foods, products - or even having to think about them at all. Boring. However, there are people all over the world suffering from Lyme, and some can't afford doctors, or worse, live in countries where there are no doctors who acknowledge Chronic Lyme at all. Nonetheless they still may have access to this product which might curesthem. So I'm going to keep this log- for them, if they need it, and for myself. It may come in handy as I plod my way along this very annoying protocol.


    #2
    PREPARATION!
    *Note to anyone taking Disulferam - the product list will be updated and refined throughout the thread. Please do not buy products based on my first few posts. When I have things I know for sure are good, I will edit them into the first post.

    My doctor is having a tiny dose compounded for me, which means we have to pay for it out of pocket. But due to my allergies to many other medications, he is playing it safe. So I will be taking the tiniest tiniest sliver of a dose, once a week, and then slowly working my way up. It will be a few months before I'm even at 1/4 of the normal dose!

    And what that means, is this annoying alcohol-free product diet is going to have to last me a long time.

    I don't drink alcohol, nor do I use lots of sauces and extras. So that shouldn't be a problem - except it is. You'd be amazed how much crap you can't eat. Bacon, smoked salmon, anything smoked - bad. Vinegar - totally off limits. High copper foods - off limits. Fruits that aren't super fresh? Nope.. might be fermented. Bagged vegetables, canned anything, nuts, gluten substitutes - all bad!

    I also have to replace any product that touches my skin. So far, I've dug up this army of products on amazon:

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    Supposedly these don't have the many products I should avoid... glycenol, ethanol, alcohol, blah blah blah blah. Let's hope.

    My next step is an acceptable diet, and also, eye drops and chapstick. Eye drops is a multiple-times-per-day necessity for me. My vision has rapidly declined due to severe dry eye which results from both my illness and from hormones I have to take. If I don't take hormones my hair falls out, I gain tremendous weight, and I experience other major problems - but if I do then my testosterone is lower and my body is more dry. So I cannot even go without eye drops for one day, as my eyes sting and burn and blur. I need to find the right ones!

    Edit: I found the right chapstick and eye drops. Now I've already spent $200.

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    Now on to food.

    I posted this in a Disulferam support group:

    I'm about to start DSF this week. I bought appropriate shampoo, conditioner, soap and dishsoap. My diet consists of vegetables, fruit, meat, pasta, bread and canned artichokes - all of which I cook with olive oil. I drink rice milk and coffee with dairy-free creamer.

    Anything here that I should look out for?
    Seriously, this is our diet, unless Daeva and I decide to go out and splurge. I'm not hard to please, I don't require tons of vinegar and other products. I'm not a foodie and neither is he. But this list was unacceptable to the people in the group since Lyme spyrochetes feed on sugars. So I'm supposed to cut out wheat. However, I can't take my medications without some kind of heavy carbs or else I get nauseous - and all of the gluten replacements supposedly cause DSF reactions. People there were so kind and had helpful suggestions, but I never ended up with a good alternative because there isn't one. I'll have to feed the lyme spyrochetes, really, because the other choices are worse.

    So for now I'm not able to eat bread (there's yeast) and pasta is just too much sugar. Potatoes will have to do. That's where I'm at now. I Will update with the next step. For now I'll do the rest of my housecleaning with my usual products - for the last time in a while - and finish the smoked food & other unacceptable food we have left.
    Last edited by Animal; 01-07-2020, 03:46 AM.

    Comment


    • Arya
      Arya commented
      Editing a comment
      Animal burts bees is the only chapstick I ever buy Also potatoes are my favorite carb and I eat them more than anything else.

    • Animal
      Animal commented
      Editing a comment
      Awesome. I think I'll stick with that and quinoa or something.

    #3
    Checklist

    HOUSEHOLD STUFF I USE

    Bought:
    - Shampoo
    - Conditioner
    - Soap
    - Lip balm
    - Eye drops
    - Toothpaste
    - Dish soap
    - Laundry detergent

    Still need to replace:
    - Dishwasher fluid
    - Pledge
    - Windex
    - Scrubbing bubbles

    CURRENT FOOD IN KITCHEN (the usual suspects)

    Foods that are supposedly ok:
    - Chicken
    - Pork
    - Beef
    - Burgers
    - Fresh vegetables
    - Very fresh fruit
    - Coffee (minimal)
    - Almond milk
    - Eggs
    - Canned artichokes?
    - Olive oil
    - Coconut coffee creamer
    - Coconut oil

    Ok for Disulferam but bad for Lyme:
    - Rice milk
    - Potatoes
    - Pasta

    Not ok for Disulferam:
    - Hot dogs
    - Bacon
    - Cereal
    - Nuts
    - Bread
    - Bagged vegetables
    - Smoked salmon

    Unsure:
    - Popcorn
    - Bananas
    - Spices

    Comment


      #4
      PREPARATION: Update.

      Some of the products didn't work out. I posted them in the Disulferam support group and people pointed out that despite the deceptive labels, they DID have alcohol in them. Drat!

      Amazon allowed me to ship it back for free, but I won't get a refund until they receive it.... and I haven't received it yet. So I had to go ahead and spend yet another $60 on separate products. These things are dreadfully overpriced.

      This is my new, updated product list.

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      Dove soap is what I use anyway and we were just running out, so that's ok. The rest is additional expenses. The "Mother dirt" shampoo is the only one I know is safe, and the only one any of these groups have approved. It's $15 for that tiny little amount.... what is that, 3 showers? I'm hissing over here. But hopefully once the bulk of new products is bought the expenses will not continue to pour in. I'm overwhelmed at the moment.

      This link helped me out. There were some suggested products and some more concise lists.

      Comment


        #5
        Ugh.

        Note, during treatment, the patient has an unpleasant sulfur smell, which is normal. This smell only appears at a certain dose, apparently above 250mg/day. It is possible to control it with 2 showers per day, with impeccable armpit hygiene (no hair, washing with insistence), and by the application of a alcohol-free pasty deodorant twice a day.


        Seriously?

        Comment


          #6
          I received some of my orders by main and returned some to UPS. Now I have to wait for my money to replenish so I can replace the ones I no longer feel confident with. There was only one for $15 that I couldn't return.

          Posted this in the group:

          This is my updated list of products that I'm near certain are good, thanks to the help of everyone here. I'll put the questionable ones in the comments. I'm posting this process in case it might help anyone else that's new.

          The things I still need are:
          - Eyedrops (I have one, but I'm less certain, see comments. For me eyedrops is a necessity, severe dry eye)
          - Laundry detergent (I have one in the comments but need to make sure)
          - Moisturizer/ hand lotion. (I saw that the Mother dirt moisturizer is good, but it's out of my price range. Any alternatives?)
          - Lip balm

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          This is the two products I'm not sure about. Awaiting feedback.

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          I will add, since some people in the group weren't getting this: I don't wear makeup or hairspray. My lifestyle is really simple. I can't give up hand moisturizer and eye drops because of medical reasons. My vision is getting worse and worse from dry eye and I've seen many eye doctors and they say use eye drops 4 times a day period. My hands are equally dry and my cuticles come off, and if my cuticles are raw then I can let in bacteria.... which is a medical problem . I actually NEED these things. This is n't about vanity for me.
          Last edited by Animal; 01-07-2020, 04:26 PM.

          Comment


            #7
            I emailed my doctor asking about what to use for eyedrops, and checking up to make sure my current medications are okay. Still waiting to hear back. I also haven't received any notice that the medication is ready, so I probably will not be starting this week. We'll see.

            In the meantime, I've returned several items. "Mother Dirt" is acceptable for Disulferam patients, and recommended on their list, but the bottle arrived and it's way too small. I refuse to pay $15 for a bottle of shampoo barely longer than my middle finger. The rest of these items have questionable ingredients, after further research. The ingredients seemed ok to me and others on the facebook group, but then others found problems with it. Learning to read past bullshit labels is an art. I must be annoying my local UPS with all these returns, and I still have more.

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            I already got these two shipments. The dishsoap, I'm not sure if I can use it, and I'm not allowed to return it. The other, the laundry detergent, I'm just not sure if it's ok. The ingredients look fine and there's nothing wrong with it but it's also not recommended per se. Some of the "pure castile soaps" supposedly can be used to wash laundry, so I'm thinking maybe I should forgo laundry detergent (now and maybe forever!) if that works. I'll find out this weekend then decide to return or not.

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            The items I'm left with, which are either approved on disulferam.net or seem to work (in the case of the chapstick), are these.

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            Chapstick
            Toothpaste
            Deoderant
            Conditioner
            Sunscreen
            Shampoo
            Dishsoap

            The middle item is Soap which supposedly can be used for:
            body wash
            face soap
            hand soap
            wood cleaner
            dish soap
            laundry detergent

            Wouldn't that be amazing?

            Too bad I didn't find that disulferam.net link sooner.


            I'm still left without eye drops or hand lotion. The moisturizer everyone is suggesting is Mother Dirt, the expensive brand with tiny bottles, and the hand cream is oil, so it leaves your hands sticky. This won't suffice for my needs so I need to keep looking. Hopefully that's all.

            Comment


              #8
              Hopefully I can figure out tomorrow why I haven't heard anything about where to get the medicine yet. I also need to swap out some of the latest products, but the product hunt is almost over.

              In the meantime I found this list and highlighted the symptoms I've had, ongoing. Most have been persistent lately except for fibromyalgia, which thankfully has been manageable for many years. I didn't highlight 'rashes' since that only happened when I was very very sick.

              I have tested positive for Lyme, Bartinella, and Babesia; and also been confirmed clinically. These are the symptoms I've endured.

              I have also suffered allergies due to a hyperactive immune system, and hormonal issues. This is common for Lyme patients but isn't on the list.

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              I am part of a few Lyme facebook groups. One has almost 20,000 members. The group on Disulferam has almost 9,000 Members. I'm just mentioning this to put in perspective that a lot of people are suffering Lyme and coinfections, and scrambling for treatment. Obviously many more than this, because not everyone joins facebook groups. I certainly did not, until I needed concrete lists of products to get me through this medication. Since it's experimental I can't just look something up for myself. Upon entering the groups, I'm not surprised to see that most people there are much sicker than me - can't walk, can't remember their mother's name, need assistance, etc.

              The sheer number of people have very severe symptoms from Lyme & co-infections, and the lack of adequate care and recognition, is why I'm writing this blog. I don't enjoy writing it but I feel I'll regret it one day if I don't, because someone might ask for information along the way.... someone who really needs it. If I feel compelled to help, I won't have to recount this whole fiasco. I can just send them here. So this is my favor to my future self and to the Lyme community.

              And if the Disulferam works, you now understand how important that is for me. Hopefully the chart helps put in perspective what I'm fighting and why I'm willing to embark on this insane product-diet.

              Comment


              • Animal
                Animal commented
                Editing a comment
                <3 <3 <3 I hate the thought of children going through what I went through... people losing their entire lives like I did when it could be prevented <3 <3 <3

              • Roshan
                Roshan commented
                Editing a comment
                How's this going, Animal?

              • Animal
                Animal commented
                Editing a comment
                Roshan I am starting Monday! That's when the medication will arrive. Before it came, I had to do some other things like order more products, go to the eye doctor and dentist, get some procedures etc, which I can't do once I get started on the Disulfiram. I've done most of the doctor appointments and scheduled the rest, so I'll be completely ready for Monday. I'm excited and really hoping I won't be allergic.

              #9
              Today I went to the dentist and the eye doctor. I figured I'd get my routine checkups out of the way before starting the medication, so I could let them use whatever products they want to dilate or brush me. A few more appointments remain.

              The medication will arrive in the mail Saturday or Monday, but I will probably begin Monday, giving me a few extra days to receive things I need.

              The person in my group told me to get the eyedrops on the left, and then my eye doctor told me to get the one on the right, which has three extra ingredients. I have to figure out if these have alcohol. This is the kind of crap I've been doing all week. And it's not as direct as "is it alcohol" but looking into how it's made, what it is, etc. There can be components in the background.

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              Ideally I should clean the house in case I can't find adequate products for a while. "Ideally..."

              Comment


              • Roshan
                Roshan commented
                Editing a comment
                You could get the house cleaned by someone else with a service like MyClean or Handy. They may have groupon discounts too.

              • Animal
                Animal commented
                Editing a comment
                Thats a good idea! Mayhap...

              #10
              My products as of now. I'm waiting for the "go" from the DSF group so I can order the Refresh Plus, which my doctor recommended as an alternative to the Refresh Cellusvic recommended by the group.

              The hand lotion is less than ideal - as it's just 'butter' and it isn't whipped. Some members of the group whipped their own, mixing shea butter and some oil product. But this is good enough to get by and saves me the work of having to whip something up. I don't know how sick I will be when I need replacements so I'd rather have easy things lined up that I can order on amazon if needed.


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              Comment


              • Animal
                Animal commented
                Editing a comment
                This is really really good stuff. While I'm on disulfiram I can't risk essential oils (they are extracted sometimes with alcohol etc) ... people have reactions with the med. But after my first round (hopefully my last!) - I will check these out for allergies. I'll need it. In meantime maybe there are some I can use but I have to look carefully.

              • Roshan
                Roshan commented
                Editing a comment
                Wow, good to know it might be helpful later! I'd suggest you call them anyway and ask about that on the off-chance they have experience with the Disulferam. It's a long shot but why not give it the shot? I mean on the off chance they say absolutely no alcohol guaranteed and 200 people took it with DIsulferam...this sounds stupid but I had to say it.

              • Animal
                Animal commented
                Editing a comment
                Actually you're right. I will call them Monday. Why not?

              #11
              Starting today. Here goes nothing! I had to take allergy pills a half hour before the dose. For now it's one tiny dose every week to prevent my allergies from flaring, so I probably will not feel anything yet. But I'll write it here if I do. I'll also post my updated product list a bit later.

              Comment


                #12
                I just took the first pill! 62.5 MG once per week to start. The final dose will be something like 250 but it will take me several weeks to get there. So far, I don't feel anything, which is good news. (No huge allergies.)

                Comment


                  #13
                  I took the pill yesterday. So far nothing terrible. I've had one meal at a restaurant, some movie popcorn, and some very clean absolutely safe home cooked food. The same exact thing happens every single time I eat - I feel somewhat 'woozy' and my stomach feels full in some way, though I am still hungry. It's kind of like drinking just a little bit of booze, and feeling the effects "coming on" but then momentarily they slip away. It's not quite nausea, not quite pain... just a 'weird feeling,' like my stomach doesn't want to process anything, but it reluctantly does.

                  My dosage is going to be much, much, much higher in the end.... so hopefully this won't get worse.

                  We are using a crock pot right now, recommended by Arya thank you! I put in chicken, potatoes and broccoli, all cut up, with black pepper. Totally safe food.

                  Earlier today however, we went to a diner and I had two potato skins with cheese & broccoli (I usually avoid cheese but was starving)... and matzoh ball soup (which was basically chicken noodle with four matzoh balls). Yesterday evening we had movie popcorn! The theater said they just made it with coconut oil and salt so we gave it a shot, and I had no problems, though I did eat slowly and only a small amount. I've also been drinking significantly less coffee and half-caff, low acid. The only time I got a full-on stomach ache was yesterday when I had my second cup of coffee and it was full caff.

                  So this is my ok list so far.
                  - Movie popcorn
                  - Corn
                  - Chicken
                  - Mashed potatoes (just potatoes and rice milk)
                  - String beans
                  - Matzoh ball soup
                  - Rice Pudding with Coconut whipped cream (at home) (carefully checked ingredients)
                  - Half-caff, low-acid coffee
                  - Two coconut coffee creamers
                  - Delicious apples

                  Comment


                    #14
                    For a few days my concentration was better. I would feel a little bloated each time I ate ANYTHING, but nothing major. We ordered out twice -

                    - Day 1: Hamburger with no bun & fries with cheese
                    - Day 2: Pasta with pesto sauce

                    I just didn't order drinks and asked them to make sure there was no vinegar in the ingredients. Nothing bad happened.

                    Symptoms I've had - nothing serious at all but just logging it for future notice in case it gets worse:

                    Neuropathy
                    This morning I woke up with neuropathy (severe tingling) in the hand I had been sleeping on. This does not seem bad, because it happens all the time, but it's worth noting because people on this medicine get neuropathy that becomes permanent! So now I have to keep track to see if it's happening more often.

                    Itching
                    Again this is normal for me because I probably have mast cell. I itch all the time. But since I Have to look out for allergies on this med, now I'm even more conscious of it.

                    Pain in chest
                    Honestly I probably just need a breast exam.

                    Bloating
                    Only after I eat. Regardless of the food itself.

                    Headache
                    I woke up this morning feeling pretty crap, but again this is normal for me. What ISNT normal is that the last few days I DIDNT feel like crap.

                    Comment


                      #15
                      I was feeling much better until the medicine probably left my body. On Monday I took my second pill, and I'm seeing my doctor upstate on Thursday.

                      Today and yesterday, I had pesto pasta from the pizza place, in addition to the usual plain at-home diet, which now consists of sticking chicken, pork, sweet & normal potatoes, and broccili into the crock pot. Also coffee & decaf coffee mixed together, with more often decaf.

                      After I took the second pill my voice once again felt a little louder. I still don't want to say this is related to the pill but it felt better than it has in a long time. I also took a long walk with my mom and had the energy to do it! I only had to stop and rest three times for less than a minute, and when I was going home, after the long walk up the hill which usually leaves me completely winded, I just kept going and power walked to my house by myself. This means it must have affected my breathing which may have affected my ability to speak with some more power too. (Though it's still very little.)

                      So, everything is going well. No nausea or bloating anymore, either!

                      The only thing I'm worried about is a slight tingle in my right thumb which has lasted the past two hours. The tingling in my arm that was there when I woke up the other day, is normal for me. And it shook off at a normal pace. However this one small tingle in my thumb is definitely neuropathic. It's been staying there. It's non intrusive and I'm still typing with no problem. It could also be carpel tunnel, considering my wrist hurts too. But this is the only tiny thing that has me worried. I will try to massage and heat up my wrist and see if it goes away.

                      Comment

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