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:
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.
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.
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.
I’ve been able to tolerate eating some fish occasionally. I’m very happy about that.
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.
Well friends, I just finished my second week on 1/2 of a 250 mg pill M-W-F, with the other days of the week at 1/4 dose. I am much more tired however, I am wondering if part of that is the Bactrim that I am also on for the UTI. Throw in the holiday and planning the Gala, along with building my business, and of course I should be tired right? (wink)
Anyway, I have a few things that I have noticed in the last two weeks:
While I’ve been able to walk around Disney no problem in the last few years, just walking the mall Christmas shopping made my hips, knees and ankles feel like lead weights and I had increased pain. This also made me much more tired.
While my tints has been improving, this week it’s increased slightly. Not sure why except I think it may be the stress, and maybe the meds?
Happy to report still no hot flashes. I thought I was having one one day and if it was it literally lasted about 2 min. and it was done.
My blood pressure meds are making me cough more often than I think they should which brings me a slight concern, however, I will give it another month and see how it goes.
I wanted to share the tea I’ve been making to help me detox. I mentioned in in my last post and someone asked what I was doing. Well, one of my doctors had recommended making this when I first got sick. I am not recalling who came up with this recipe, however, you can order the herbs from Mountain Rose herbs in CO. That is where I got mine. They come in bags.
So I brew them up based on the dosage listed, let them steep, pour them into my tea pot and use 1-2 TBS each serving with hot water, lemon and a dash of Stevia. I do this in the morning. The brew usually lasts a few days then I do it again. I put it into a glass container and refrigerate between servings.
This tea is great for detoxing the kidneys. Also, I found that Beet Kavass is also great as a blood tonic. There is a great recipe in the Nourishing Traditions book. If you do not like that then make sure to eat plenty of beets with your salads, walnuts, avocados and watermelon are all great liver detoxing foods.
For another hot beverage, I make Pau d’Arco Bark tea. Again, boil it down and let it steep then add 1-2 TBS to hot water. I like to add the Stevia to it. Again, Mountain Rose Herbs. Pau d’Arco Tea is great for candida and actually helps to not only fend it off but will help break it down.
I’ve back slidden a bit on my eating with the holidays. I have eaten way too many carbs. I am working back to Whole Foods and salads with less breads.
So, that’s about all I have to report today. Looking forward to seeing what the next few weeks has to offer.
Don’t forget, if you are local, mark your calendars and keep watch on the WLN website for the details on the Gala in February. 2/28/2020. Won’t you help make a difference?
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:
My tintitus is getting better. I have days and moments when it is non existent.
My brain fog has lifted.
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.
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.
My word recognition is coming back. Doesn’t take me as long to find what I want to say.
I am organized and prioritizing without getting overwhelmed. Wow!
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:
Slight tightening in my throat area, around my thyroid? Could it be helping my hashimotos? Hmmm….
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…..
My liver enzymes are slightly elevated, so I am eating more foods rich with liver detoxing ingredients to help. More bananas, beets, and avocados.
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. 🙂
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:
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.
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.
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.
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:
A bit more tired.
Tinitus as of today is not as bad as it has been.
Slight dizziness within one hour of taking.
Shockingly my hot flashes (which are due to hormones not Lyme) are actually not quite as bad.
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:
Taking a 250 pill, cut into quarters, taking 1 quarter tab M-W-F for three weeks.
Vegan and GF, eating plant based.
Have removed all caffeine from my diet.
Removed all products containing any alcohol carrier and all vinegars or fermented foods.
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.)
Sitting in the sauna at least 3x a week.
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.
I write this in hopes that it will help others on this journey we call Lyme.
I started this blogging when I was so ill, trying to find a connection to others like me and to journal my thoughts moving through the Lyme healing. It’s been 6 years and I am happy to report that I am doing pretty well yet I am not completely healed. I will never be cured, however, I am working toward a remission state of healing.
My journey over the last 6 years has taken me through not just a journey of pain and healing, but a journey of growth and understanding. When I was at my worst, I never complained to God, I never sat back and felt sorry for myself, and I never turned away from my faith. I knew that the pain, which was 100 fold worse than childbirth (and that was really bad for me…), would be used for something, I didn’t know what, but I knew it had to. I knew that my memory issues, when I couldn’t remember names of people or words, would eventually resolve. I knew that one way or another, one day, I would wake up and live again. You are likely asking yourself how I could be so reassured when I was in such a bad state. Faith. I prayed that should “God Choose” to heal my broken body, then I asked him to allow me to help others so they didn’t feel alone or afraid and lose hope. I prayed asking that all of my own suffering be used and not wasted on just a memory. I prayed that if I should not survive this torment that was going on in my body, that I show grace through the journey of it and that I keep my faith strong as an example to others. As I write this, it sounds as thought I was not afraid at all. Quite the opposite, I had fear. I feared that my life on this earth was coming to an end and that my children would no longer have their mom around. I feared leaving my husband and not growing old together. Fear was there, I just didn’t dwell on the fear and I did not let it overcome my faith in God and my walk with Jesus Christ.
As it turns out, God did choose to carry me through that time and get me to a place of healing, and I found the strength to help others. My healing is not yet complete, and let’s be real, never will be until my body is in fact in the grave and I am with my savior.
But Jesus on hearing this answered him, “Do not fear; only believe, and she will be well.”Luke 8:50
Walking through the eye of the storm, I can see that there is hope for so many. I see the Lord opening windows and doors for others who are suffering. It’s a slow opening, yet it is opening all the same.
As I continue on the journey of healing, I have decided to take another leap of faith and try a new drug that doctors are starting to see improvement with when it comes to Lyme. This particular drug has been around over 70 years and has been used for one specific use, while other uses have also been proving to be successful. There is a lot to understand about it, it is still in clinical trials, and only a doctor who knows what to do with a patient on this drug should be prescribing. That being said, I have spent the last week and a half preparing my body for administration of this new treatment. I am hoping that anyone else out there, trying this, or wanting to try this, will stay following me and come along on this journey with me, sending support and encouragement. (Not financial support, I mean support to uplift.)
To begin, I have researched the heck out of this. I even have pages printed of things that interact with this particular drug, from medications to everyday household products to female toiletries including makeup and creams. I have watched researchers talk about the drug, been on the facebook support groups hearing stories of those gone before me and have been preparing my body.
I want to share what I have done in preparing myself for this so that anyone else can perhaps use it as an example of the things to do or not do. To start, I spent one week going through all of my supplements, herbs, tinctures etc. and boxed up what I am not going to be able to take. Since I am not allowed to eat, drink or use anything with an alcohol carrier, this is anything but easy. Many of my tinctures include some sort of alcohol carrier. Including vanilla extract. Vinegars and anything fermented are off all menu options. No caffeine either. So where does one go from there? I mean, I am already vegan because I have inflammation and pain with any and all animal protein. Well, let me share with you what else I have done and am doing.
The first week, last week:
Cleared out all cupboards of supplements that are not allowed.
Spent last week drinking only one cup of coffee each day to alleviate any sort of caffeine withdrawal.
Stopped using all vinegars. I found instead flavored Olive Oils from Oro Oils. I have one that is infused with dill, one with sage and mushrooms, one with lime, and one with a buttery flavor.
Gave up all alcohol. Finished my summer wines and did our October wine tasting at Cooper’s hawk and now I am done until I am done with this protocol.
Got a baseline in my bloodwork so that my two doctors can watch my liver enzyme levels and my thyroid.
Research Research Research!!!
So that was last week. This week, I am:
Writing this blog post for others to follow and be encouraged through my journey and learning from what I have taken on. (Yay!)
Stopped drinking all coffee. Rather I am drinking a home-brewed tea out of herbs from Mountain Rose Herbs in CO. It’s a special kidney, liver cleansing combination. I brew it till it steeps and then strain it. I then boil it down until it is half. I have been drinking 1-2 TBL. in hot water with a lemon slice each morning. Saving the extra in a glass jar for the next day.
Ordering a medical bracelet or necklace so that if there is any emergency situation that needs attention, medical personnel are aware of what I am taking.
Putting together a schedule of all of my supplements and medications, their times of day that I am taking them and how much.
Finding recipes that are healthy whole food recipes that I can make with little fuss or minimal at that.
I am going through my calendar and making sure that I have down days to rest.
I have asked people to start praying for me and for my health. That this be the final step in getting my body into a remission state.
Sitting in the Sauna M,W, F. Detoxing with Activated Charcoal and clay. I will also be doing Epsom Salt and Baking soda Baths on the opposite days once I start the new drug.
We are going out this weekend to meet with some friends we have not seen in a very long time. Meeting in the city. I want to be able to enjoy my time without making any mistakes that will affect my starting this next week. So I am:
Packing little herbs containers with my favorite herbs to sprinkle on salads or on my veggies.
Making my own dressings and placing them in little containers so that I can carry them without any issues in my purse.
Packing my own snacks just in case. As well as some of my favorite sparkling water.
We have planned out and made reservations at a few places that we know I can eat at safely. So planning ahead is always key.
You can see that I am likely going way over above and beyond what I need to do, yet for me, safety for my body and preparedness is important. If something that you put in your body takes 2 weeks minimal to get back out of your body, what about the preliminary intake of foods that will interact with the drug. That is why I have taken two weeks prior to beginning. I will be using this blog as a journal of sorts to share. So if you know someone with Lyme disease and who is considering Disulfiram, please have them follow along. I hope to help many more.
Next update will likely be next week after first day of my taking it.
