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Why?

Touching Base the Disulfiram Journey

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My beloved grandmother whose love knew no boundaries and whose adventurous spirit kept us all on our toes.

Checking In

It’s been awhile since I check in. I have a very good reason. On January 1, my birthday, I received the most delightful wakeup call from my grandmother. She called to wish me a happy birthday and we had the most wonderful conversation. Later that afternoon, I received a call from a family member that my dear sweet 94 year old grandmother had been taken to the ER with a brain bleed. She was living in FL and myself living 5 states away, I could not get to her that day as all flights were done and so on January 2nd, I flew down to be with her. On January 5th she passed on to be with the Lord. I did not return home until the 12th, as there was a great deal to do, as you could imagine.

I do not think that I could have endured the trip, caring for her those 5 days, the hospital environment (with 2 cases of MRSA on the same floor just a few rooms away), the emotional stress of losing a dear loved one whom I was extremely close to, and then the planning a small memorial breakfast and caring for her home and all of her little treasures without having been on the Disulfiram. The fact I did not get sick or come home and completely collapse is due to two things: God’s providential care and shielding over me, and my LLMD who prescribed me this protocol using the Disulfiram. I am absolutely certain that God’s timing is ever so perfect.

On January 6th I was scheduled to begin my 1/2 of a 250 mg pill of the disulfiram daily, and I did not falter on that. I continued on with my treatment. On February 3rd I began the 3/4 of a 250 mg pill M-W-F while taking 1/2 T-Th-S-S. Thus I am on my second week of this regiment. I have noticed:

  1. The pain in my right ankle is quite obviously much stronger. I have a difficult time walking around first thing in the morning and at the end of the day. In fact the pain at the end of a day is so excruciating that I cannot get comfortable and am unable to get the pain to subside. Going to bed is my only saving grace.
  2. Ok, so TMI….The body odor smell that everyone talks about on the blogs is very real. I’ve hit that stage and it’s making me crazy. Two showers a day sometimes is not enough. It smells like metal. Especially when detoxing.
  3. I was, I thought, done with my monthly cycle as it has been for the last two years only showing itself at 4-6 month intervals. Well, I had gone seven months and thought I was past it. Nope! One last hurrah? Not sure. I’m blaming the Disulfiram.
  4. I’ve been able to tolerate eating some fish occasionally. I’m very happy about that.
  5. I am tired and find myself taking more breaks from “life” just to rest. Yet, I am also more motivated to get things done. I’ve been cleaning like never before. I know, sounds crazy to feel both. I think that the energy I have to get things done and the motivation takes me just so far and then my body is saying “ok, break time”.

This Lyme journey has carried me through so many locations of emotions. I have felt near death, I have felt sadness and darkness along with loneliness and I have also felt overjoyed and praise filled. My thinking is every so clear nowadays and I am so grateful for the opportunity to be able to share with others this journey. I hope that one day, someone will be able to follow with hope after seeing that healing is possible.

My grandma used to wear my Lyme bracelet in recognition of Lyme disease. I was delighted to find it in her drawer after she passed. She was so happy that I was feeling better over the last few years. I’m glad that I was able to be there for her in the end of her sweet life and that she supported me with unconditional love throughout my journey of life. She is very missed and I am slowly working past my grief.

Love you forever grandma.
Why?

Touching Base The Disulfiram Journey

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Week 7

Well, I have to say, I am beginning to think that this is the way to go. When I saw the Lyme medical professional that is treating me this past weekend, I was able to report:

  1. My tintitus is getting better. I have days and moments when it is non existent.
  2. My brain fog has lifted.
  3. I am waking up in the morning with energy and it seems I’ve slept all night (even if I know I have not). I cannot sit still knowing that there are things to do. And guess what? I’m not tired and I am motivated to get things done. I have not had this much energy in over 36 years.
  4. My hormonal night sweats and intense hot flashes that I’ve had for almost 8 years has taken a hiatus. I haven’t had one in over a week.
  5. My word recognition is coming back. Doesn’t take me as long to find what I want to say.
  6. I am organized and prioritizing without getting overwhelmed. Wow!
  7. I actually tried some Salmon a few times in the last week and a half and I did not have any side affects. What? Yes!

Side effects I’ve noticed in the last 6 weeks:

  1. Slight tightening in my throat area, around my thyroid? Could it be helping my hashimotos? Hmmm….
  2. I had one pain that last less than 10 minutes in my chest last week. I had no other symptoms and it wasn’t concerning, I just noticed it. Helping the Lyme in my heart? Another hmmm…..
  3. My liver enzymes are slightly elevated, so I am eating more foods rich with liver detoxing ingredients to help. More bananas, beets, and avocados.
  4. I had some issues with urination a few weeks ago, burning and urgency to go. I still have an urgency yet the burning is gone. We did a urine test actually today and I will wait to see if I have a UTI. If it comes out negative, then the doc said it will be likely that it’s the die off of the lyme in my bladder and kidneys since Lyme loves that area.

I am starting my 1/2 dose of a 250 mg pill today. I do take them at night as it helps with the tired feeling after I take them. This way I don’t notice it. I will take 1/2 M-W-F for 3 weeks and still take 1/4 of a tab the rest of the week. The journey is slow and yet it is progressing. I am very excited.

I’m still making my kidney detox tea in the morning. Eating lots of veggies and am staying away from anything alcohol, vinegar, and caffeine related.

Cannot wait to fill you in how the 1/2 goes. Prayerfully well. 🙂

Lymes

Touching Base the Disulfiram Journey

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Week 5

You have all been waiting I’m sure to hear how it is going. I have to be honest….its going great. I am half way done with my second week on 1/4 dose every day. I’ve started taking it at night because I notice, as have so many others before me, that it does make me drowsy. So at night, I can sleep it off.

Improvements:

  1. For the first time in at least 36 years, I am waking up feeling as thought I’ve slept through the night, waking without feeling tired and ready to get on with the day. I feel like a little energizer bunny that has so many things to catch up on and I’m actually getting them done.
  2. My constant Tinnitus, although still there, is much less in frequency. I’ve noticed that there have been days or moments in days that I do not have it at all. Wow! Maybe my hearing loss will slow down.
  3. My brain fog and word loss is also improving. I do not search as long for the words I want to say and I am feeling as thought the fogginess in my head is lifting. Kind of like the San Francisco fog, thick and mucky, slowly parting and allowing the sun to shine.

I know I still have a long way to go yet I am beginning to think that this is definitely the course of action for many who are on this journey. (Which, if the numbers keep rising, this may be the way to go for everyone. Especially since we are at a 1 out of 2 ratio.)

On a brighter note, we are planning a gala for the Wisconsin Lyme Network. We are raising money for the new Tick-Borne Illness Center of Excellence in Woodruff, WI.

This Center/clinic is the first of it’s kind in the country. They are researching, by collecting ticks and blood samples, while also diagnosing and treating. There are other clinics around the country picking up on this idea, yet we are the first state to have one. Thanks to OMI (Open Medicine Institute) and The Howard Young Foundation. While they currently need more staffing, they are treating patients and have over 150 on a waiting list. They even received their first international patient this week, coming from Canada.

The Wisconsin Lyme Network is raising money to help fund the gala, through sponsorships and general donations. These can be made through our website Wisconsin Lyme Network, in the secure donations section of the website. Once a donation is made, you will receive an immediate thank you for your tax write off. Please make sure that your donation specifically states in the memo portion that this is for the gala. We need sponsorships for the dinner itself, band, hotel and travel for the guest speakers, mailers etc. Any little bit helps and is graciously accepted. This is our first gala in WI and we are looking forward to this becoming an annual event.

If you are interested in attending, please email us and we will send you an invitation. The date is February 28, 2020. Yes, it’s coming up quickly. We will hear from the treating doctor at the clinic, Dr. Andy Kogelnik as well as Dr. Neil Spector. While Dr. Spector may not be in attendance, we are planning on him speaking through video. If you are not aware of who he is, please take a look at and read Gone in a Heartbeat. His story is an incredible testimony to the misdiagnosis that goes on when it comes to Lyme.

Why?

The Disulfiram Journey: Update

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Magic Kingdom November 2020

I finished up week two and am on my third and final week of 1/4 of a 250 pill M-W-F. Thus far I’ve noticed:

  1. My tinitus is not as bad and I have to actually sit and think about whether or not I have any. I do still have some however, not nearly like it was.
  2. I defiantly get tired a few hours after taking, so next week I may switch to nights so that I can sleep through the tiredness.
  3. I have always been a car sleeper and we drove to Florida from WI and I was awake both full days without taking a nap. This has never happened so that alone is huge. Even after a full day of walking around Disney, I can come back to the camper and make dinner and do all of the dishes prior to resting. Again, another huge change.
  4. I feel more motivated and my thinking is very clear. My brain fog and name loss is getting increasingly better.
  5. I find that I have more issues if I do not drink enough water during the day or if I miss my supplements in a morning. When I say issues, I mean that I notice I’m a little off.

I am looking forward to seeing what happens next week when I take it every day. I am praying that they pharmaceutical company that makes it can keep up with the demand and I read recently on a post on FB that there is shortage and the expect it will be February 2020 before they are back up to speed with the demand.

Guess we will see. Have a wonderful week everyone. I’ll touch base after next week when I have had a full week of meds each day.

Lymes

Touching Base, The Disulfiram Journey

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Update after week one.

Well friends, I am beginning week two. The first week went well, no issues other than slightly more tired. I literally have been falling asleep on the lounger at night, which is not something I am prone to do. So after one week:

  1. A bit more tired.
  2. Tinitus as of today is not as bad as it has been.
  3. Slight dizziness within one hour of taking.
  4. Shockingly my hot flashes (which are due to hormones not Lyme) are actually not quite as bad.
  5. I kind of feel as though my brain fog is slowly lifting. Not as much pressure. I have had a few more minor headaches.

Again, I am:

  1. Taking a 250 pill, cut into quarters, taking 1 quarter tab M-W-F for three weeks.
  2. Vegan and GF, eating plant based.
  3. Have removed all caffeine from my diet.
  4. Removed all products containing any alcohol carrier and all vinegars or fermented foods.
  5. Watching carefully all supplements and making sure I take them. Especially vitamin C, taurine and glutathione. (Especially glutathione for my MTHFR, a genetic disorder which I got from both of my parents.)
  6. Sitting in the sauna at least 3x a week.
  7. Detox Detox Detox….activated charcoal, Cholestrymine, lemon water and my own herbal fresh brewed tea to detox my kidney and liver.

I am hoping that I will be able to notice more improvements after this week. I would especially love to have my ankle not be so stiff and painful to walk.

Lymes, Why?

Touching Base, The Disulfiram Journey:

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Picture of my flavored olive oils. Infused with limes, oranges, mushrooms and sage, dill and a butter flavor.

Day One

My two weeks of detoxing and preparing for the Disulfiram journey has ended and this morning I took my first pill. The dosage I have been prescribed is 250 mg. I am starting at a 1/4 of a pill, M-W-F for 3-weeks. Yes, I am starting out slowly. I’ve dealt with this disease for over 36 years, I can handle 1 more year, if that’s what it takes. What I thought was interesting was discussing this drug with the pharmacist. She simply said avoid alcohol. She didn’t clarify to the extent that I have researched. I think this is a warning to all….make sure you do your homework and make sure you are doing your own due diligence. Although the pharmacist should have also mentioned caffeine, vinegars, alcohol carrier, she did not. I brought them up to her and after a few moments she then acknowledged and confirmed what I was telling her. Take this as a warning, they will not tell you everything and you need to make sure you are taking precautions for yourself.

Last weekend we went to Chicago for the weekend and although I prepped for the meals out, I actually used very little of what I prepped.

Home brewed detox tea in smaller capped bottles one for each day. The two spray bottles held my flavored oils for spritzer on salad since I cannot have any dressings and the smaller bottles were selective herbs and pink Himalayan sea salt.

I was able to go through the menus and make up what I could have, telling the waitstaff what I could and could not have and the chefs did an amazing job.

For breakfast the first morning, we ate at Beatrix, I was able to have a coconut milk chia pudding with banana, toasted coconut, puffed rice and a diced up peach. It quite delicious especially with the mint on the top.

Coconut milk chia pudding with banana, puffed rice, toasted coconut and diced peaches.

For dinner, we went to Tavern on Rush and had a wonderful selection on the menu for everyone. I was able to order a baked potato , a side of grilled vegetables and a side of olive oil with some herbs. I basically at the grilled veggies with the potato with the Olive oil herbs they gave me. It was quite delicious.

Baked Potato with grilled vegetables. Asparagus, red and green peppers, zucchini,and onion with a nice lemon on top.

On the last morning the first place we wanted to dine was closed so we opted for option 2 and went to Hub 51 where the menu choices were a little more challenging. What do you eat when even the potatoes have milk and butter in them? I mean, telling them you are a GF Vegan that also cannot have anything with alcohol and vinegar is not easy. What they came up with however was fabulous.

Onion, red peppers, mushrooms sautéed and put into a corn tortilla with a side of avacado, salsa, rice and black beans. Wow! It was wonderful.

We had a great time, and going into today I felt more comfortable on this journey. I am prayerful that I have prepped and given myself full disclosure on what it’s going to take and how to protect myself from falling down. We will see.

Lymes

Touching Base The Disulfiram Journey:

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What’s In The Things We Eat/Use?

I’m on my second week of prep prior to beginning my journey with Disulfiram. No coffee, no tea other than the raw herbs I steep and boil, no vinegar or alcohol in anything.

I turned in my prescription the other day. The pharmacy techs are always so nice and cheerful, well, most of them are. That day was no different. They chit chatted away as I picked up a previously ordered scripts and when I handed them the new one for Disulfiram the tech that took it, after a long pause of studying it, stared at me with a face of disbelief. It was as if she thought she had finally put all the pieces together. She thinks I’m an alcoholic. My kids and husband think I should have explained myself, however, the pharmacy does not need to know why. My daughter said that she thinks the tech was finally able to understand why I’m always happy. hahahaha. Nice!

As I roamed the isles looking for a toothpaste, I was astounded to find that many have alcohol in them. I looked through all of the non-fluoridated natural toothpastes and could only find one that did not. The day prior to that, I was putting plain spices from the spice cupboard on my salad with some olive oil and I pulled one out that was for veggies. It was a veggie blend. I almost just shook it on without looking and then I decided to just look at the ingredients, only to find vinegar. Yes! They had dehydrated the spices and they vinegar on them. When shopping at Costco, we looked at a salsa and again vinegar. I am used to reading labels so this is not hard, and I know what likely will have vinegar, it’s the little things that I didn’t expect it to be in that has me even more cautious.

Last night we went out and I ordered water. Since I don’t usually drink soda, but I cannot drink coffee, alcohol or tea, I thought I’d try a Sprecher soda, in a bottle. A bottle won’t have the HFCS in it and I know they make it with local raw honey. Thank goodness I haven’t started the DSF yet. Believe it or not it had two extracts in it. Yucca and Vanilla. Well extracts have alcohol carriers. I would be sick if I had already started it, since I didn’t realize it until after I drank some of it. This makes me even more cautious that I need to be sure I am prepared to go out to eat. Taking even more caution with what ingredients are being used.

Today I am prepping to head to Chicago this weekend to meet up with some friends and for a meeting. I will provide pictures of what I took with me to make sure I was being safe with my meal choices.