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.
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:
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.
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.
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.
I feel more motivated and my thinking is very clear. My brain fog and name loss is getting increasingly better.
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.
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.
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.
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.
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.
Have you been to a fast food joint lately? As we traveled a few weekends ago, my daughter and I stopped in to get a cup of coffee and to get her an egg for her GF bagel. We were shocked to see that in this southern town, the McDonalds was actually more crowded than the Starbucks, a huge contrast to what we see in the northern Midwest. It’s been a long time since we have been in an establishment of the fast food industry where it took almost half an hour due to the great number of people ordering and receiving their meals.
I think that in looking back on that, I felt compelled to let people know how we usually travel on road trips, without the RV. It’s not difficult and just takes a little planning.
I shared how we do it in my Family Focus Travel by Sherry website earlier today and I want to share it with all of you. Keep in mind this is only part one and next time I will be writing how we did the same thing driving around Scotland.
I have recently been in touch with some very old friends, and by old, I do not mean in age. They were people who touched my life many years ago of whom we lost touch due to the turning of everyday life. Women who brought me joy, laughter and the safety to be myself. These women have been not long forgotten, and the friendship misplaced for only a period of time. Although Facebook and social media brings challenges, it is also a place to reconnect. From new friends that are destined to be lifelong friends, to lifelong friends that are destined to be new. I am blessed to be able to say that God has been renewing my broken spirit and refilling my empty soul.
The last several years I have been feeling lost in the upheaval of our church, saying goodbye to friends, being the mom of adult children, and just the everyday disappointments of family, earthly life and expectations. Each day, for the last few years I found myself becoming more and more “aged” with critical judgements of all the things that “didn’t go my way” or the “way I thought they should be”.
The Lord was always near and waiting for me to pursue Him with not just my eyes in scripture, yet with my whole heart. Don’t get me wrong. My prayer life has never faltered and my faith never wavered. I just have felt a “quiet” in my heart, that I have not felt in a very long time. Being unable to dance through each day knowing that there is so much more to every day living on earth. Sin is ever rampant, not just in unbelievers, yet also within our Christian community, making my emptiness ever so exasperated and enlarged. I never ask “why God”, nor do I question His will. I do however, sit back, still as a chipmunk who is hunted by the cat, and stare off wondering when will enough be enough.
More recently, I have confessed to the Lord that I needed Him to close that gap and help me to seek Him without distraction. What the Lord did in answer to that prayer, was bring forth a friend of my past whose adult journey parallels in so many ways my own. Her faith has been unwavering. She is a woman of God who has been used to reach out to me, fulfilling that desired hope in human kindness, with a Godly perspective.
The Lord has also helped me to see how often Satan feeds my mind with lies. I have been lost in thought, in everyday life, and in “time consumers” rather than focusing on what is most important. I have felt lost in my worship due to so many unspoken circumstances. For me, it was the bringing forth a new friend who shares a bond of sisterly encouragement. The Lord shared with me, the comfort in knowing that the woman leading our group has a common bond through a bible study that I have so missed. In learning this, my heart warmed and I felt a peace I have not felt in years. The Lord has heard my prayers and has not disappointed. It’s all been in His timing, not that of my own. Praise God for His mercies. Relying on him and trusting in him is all he wants from us. As difficult as it is sometimes, we find peace in the most unexpected ways. He brings forth iron to sharpen iron in the middle of the tea party. He keeps that cup that is tipping from falling off the edge and fills it to the brim with weight that is immeasurable, keeping it stable.
Friend, are you lost in the busyness of life that you have not sought out the One true love of your life? Have you given your time to Him so that He can fill you with springs of living water? Are you nourished so that you may grow? Have you prayed for the Lord to bring you closeness with Him? I encourage you to take all of your cares, lay them at his feet and pray not for him to send you a savior, as you already have one in Jesus Christ, yet to pray that you can see the blessing in every circumstance and that if you are unable to see the blessing before you at this very moment, that you will be given the eyes to see it when the Lord is ready to show you. How about putting away social media long enough to refocus our attention on the one true media outlet that can change out lives, bring us peace and give us grace to overcome all that is before us on a daily basis.
For two dear friends, I am reminded of these verses.
Romans 8:26-30 Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercede for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.
