When I was first diagnosed with Lyme disease, EBV, co-infections, mycoplasma pneumonia, etc. etc. I wondered how I would survive and how I would get my life back. I’ve shared my story and I’ve shared my journey through Lyme and yet I am still in awe that I have been blessed with healing and have come so far. The Lord has given me strength when I thought I had none, he gave me hope when it was far reaching, he gave me His Word when I needed it the most.
I was asked a year ago, if antibiotics work, why don’t people hear about it and why aren’t those who are healed talking? Well, I responded with the fact that those who have been given a second chance at life are living it. They don’t want to relive the horror of Lyme. The exceptions are people like me who carry on trying to bring awareness and share with others so that they too can be educated on symptoms. Lyme is considered the great imitator for a reason. So many of todays throw in groups of diagnosis, when there is not an answer to “why”, can be and very likely may be Lyme disease or one of the co-infections. The testing is flawed on so many levels and doctors do not have the resources they need to diagnose.
I am one of the “lucky ones” you could say. I say I am blessed beyond measure. So are many others. They are sharing their stories in incredible ways. One such couple, I’ve been following since my journey began. This was one of the first videos I found on Lyme disease. I was heartbroken, and my adrenals went haywire with the emotional rollercoaster of this video, however, it gave me hope. Hope when I needed it the most, when the pain was excruciatingly bad, and when in most people’s eyes there shouldn’t be.
This video is still flourishing around and although its content is difficult to watch, I have to share with you before you watch it, that Justin and Christa now have 3 beautiful children and they are living normal lives. Christas journey is not unlike that of so many others that have followed in her journey since 2004. I am hoping that if you are watching this, you will remember that hope is something to hold onto, a mental place set in the mind when you need it the most. Pray about it and cling to it.
Be educated dear follower, Lyme and co-infections are the most widely spread vector borne illness in the country and in many parts of the world. Over 400,000 upward of 1 million are affected each year. Most of which are undiagnosed and or misdiagnosed. Putting that into perspective, Breast cancer has 264,000 new patient diagnosis each year. Hence you see the problem.
I am sharing my lyme story with a reporter who is sharing about Lyme disease and the affects it has. I want to make sure that this stays “my” story and am posting it here first. If you know it, you don’t have to read it again. If you want to be reminded of how important prevention is, and how much you need to understand the symptoms, read it again. I could on so many different levels been diagnosed at one time or another with: Lupus, MS, Alzheimers, fibromyalgia, rheumatoid, chronic fatigue, Meneres, and so much more. Between all of my symptoms, it’s crazy I didn’t get into one of the above throw in groups. Question your symptoms, question the doctors and ask WHY. Huge game changer when you start asking why and start doing your own research.
My Lyme story began long before I understood that it had. On a camping trip in the early 80’s to the eastern states I had become ill. Not thinking it was more than just exhaustion or something of that sort, I went along as normal. Approximately 1-2 months later, as I began my High School journey, I began having symptoms, of which at the time, the doctors had no idea what was going on. I was falling asleep every afternoon, I began having migratory pain in my legs, I had migraines and I also began experiencing Supra Ventricular Tachycardias. For someone my age, doctors had no idea what was going on. I grew up in MI and so even though Lyme was picking up attention in the east coast, no one really knew how to deal with what I was experiencing in MI.
My sophomore year in HS, I also had water on the knee, with no injury. This is classic for Lyme patients. I spent several months on crutches and it eventually was better. I continued throughout HS to have the above symptoms and in my mid 20’s my SVT’s were so bad that I ended up having a heart ablation. Again, the doctors could not understand why I was having them.
When I became pregnant with my first child, I “strange looking” stretch marks in places my doctor had never seen before for a pregnant woman. I found out later that these were bartonella markings. Our first child had a coroid plexus cyst on his brain, which ended up being nothing and he was born normal. Our child did experience, allergy type symptoms, unknown fevers, food intolerances all of which were strange to us since we had not had these types of symptoms in our family prior.
Fast forward a few more years, both of our children started having bartonella tracking, around the age of 8-10. They both were diagnosed Hypo thyroid and their adrenals were a mess. As for myself, their labs mimicked mine. I too was diagnosed with hypo thyroid, EBV, adrenal dysfunction, food intolerances, etc. Yet, no diagnoses. I was tested in my 30’s for parasites, rheumatoid, fibromyalgia, and so much more. Still no diagnosis.
In 2013, we now live in WI, I am tired and my adrenals are a mess, yet I keep going with my life as best I can. I remember starting to have trouble with my right ankle that summer. For over 2 weeks I felt like I was dragging my right foot. I was too busy to worry about it and thought maybe it was pinched nerve that needed to work itself out. I also noticed that when I was working in my garden I was getting dizzy and wobbly at times. This never happened to me.
Fast forward two more weeks and I fell asleep on the couch, which I never do, only to find that I could hear everything around me. I could not however, open my eyes. I had to physically use my hands to open my eyes and head to bed. I slept 10 hours that night, came downstairs the next morning only to find that I couldn’t stand up, was so exhausted I couldn’t function. I collapsed on the couch. I started having chills, felt sick, and was experiencing the worst exhaustion I’d ever felt. After a few days, it continued and I called my doctor. I was told that with the fact I go out to a farm, have two gardens of my own and I am outside most of the time, I should be tested for Lyme. I was also test for rheumatoid again. We did not do the CDC Lyme test, my doctor directed me to the IGenix test immediately. As the 3 weeks went by waiting for the results, I began having excruciating pain in every limb and throughout my body. I couldn’t remember names, I was having a hard time with cognitive thought, I was sleeping at least 18 hours a day if not more, I was confused and disoriented. When the testing came back positive I was relieved to have a diagnosis. I was very positive for Lyme and then co-infections. I sought out a medical professional that treated Lyme, of which took a more alternative and natural approach. I was happy with that and spent 2 years treating this way. While treating the Lyme this way, I also saw a chiropractor weekly, did weekly messages, had acupuncture every few weeks along with crystal light therapy, and I continued to be sick, I thought my life was going to forever be the way it was. I was bed bound for 10 months at the start and I ended up purchasing a wheelchair for anytime I needed to walk. If there was an activity, I had to sleep and rest for 3 days and then after the one day activity (of which I was only able to participate for half of it) I would have to rest 4 days later. My brain fog continued, I continued to have sharp pains that came out of nowhere at the most inconvenient time, I was dizzy, I couldn’t’ drive, I had terrible memory loss and word recognition was awful. I still couldn’t walk to the end of the driveway. I had acquired a virus that attacked my heart, I was dealing with Mycoplasma Pneumonia, EBV, Lyme, co-infections, diagnosed with Hashimotos and more.
After 2 1/2 years of this treatment plan, I decided to try another LLMD that treated with antibiotics. After just one month of antibiotics, I began to notice a difference. After 6 months of antibiotics, at high doses, a cocktail of 3 at a time, I was shocked to see the difference in my quality of life. My coughing was gone, my pain in my limbs was getting better, my brain fog was clearing up, I did not need the wheelchair any longer, I could actually participate in life experiences without having to rest days before and after.
Three years on high doses of antibiotics, changed out every few months, high pro and probiotics and changing my diet to accommodate, I can say I am almost completely in remission. I am trying a last treatment option which I am confident will close the box on Lyme and I will be officially in remission.
I am a Disney fan and have had several annual passes. I can now go to Disney without using a wheelchair, I can walk 9 miles in a day and do it again the next, I am thinking clearly and my brain fog is almost completely gone, I no longer have cognitive issues or work recognition issues other that that which is normal for my age which in my 50’s.
When my health started to return, I volunteered with the Wisconsin Lyme Network and have since become the president. I volunteer my hours trying to educate and bring awareness to this disease that is not the highest vector borne illness in our country and in many parts of the world. Our numbers are more than double that of breast cancer, far more than west Nile, and so much greater than even HIV. Even with these staggering numbers, our society and our communities do not understand what a small insect is capable of doing to the human body. Carrying infectious disease and destroying the inner workings of the body. We need to get the medical community to efficiently treat, diagnose and care for patients with accuracy, and we need our communities to take prevention seriously.
You may ask, why after so many years, did I “do ok” with my circumstance? We believe that either a second tick bite while I was working at the farm or a stressful situation triggered my full blown response. Adding in the story of my children, they both contracted it through me when I was pregnant. Of which, after all these years, the CDC has FINALLY admitted that transmission is “possible” through pregnancy from a mother to the child. This of course I’ve known for years, especially after watching Under Our Skin, documentary.
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?
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.
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.
Most people do not remember being bitten by a tick or remember a rash. Take a look at letter D. Perhaps that’s because they never saw the grain of sand?
I woke up this morning to another call from a friend whose one child is treating for Lyme disease, while two others had ticks pulled off of them this weekend. A fourth child they had treated a years ago and they are discussing the symptoms of a fifth child needing testing. I am so grateful that my friends can call me and ask me questions about doctors or where to send the evil critter that made the human body a host for destruction. Without experiencing the hell of Lyme disease first hand, I never could advise.
Are you a skeptic? I was once as well. In fact, I remember giving books on natural remedies for viruses and bacterias, diet and more, to individuals we were praying for in church who were afflicted with Lyme. Little did I know, God would offer me the opportunity to experience the pain and agony of Lyme. I remember praying that should God allow me to recover rather than die, I wanted to use the experience I endured to help others and bring awareness and education to those who do not know otherwise, as I once was. Would I change what I experienced for good health? Nope! I would not. Why? The way I look at it, I was given an opportunity to experience what so many experience so that I can give back. Give back to a community that is not being heard. Give hope to those who have lost all hope and to be an example of what others can attain.
Newsweek ran a story recently that Lyme is expected to affect over 2,000,000 people in the next year. Whether or not you agree, the science and the statistics are not unproven. Most of these folks are undiagnosed, or wrongly diagnosed and not getting the help they need for remission. Some may also be improperly treated, as we know that more and more doctors are not educated in proper treatments. For some reason, even hospital administrators are having their hands tied to the IDSA treatment protocols rather than the ILADS. The infectious disease doctors are not allowing Lyme patients to be given the help needed. They stop willing doctors from CME courses that would give them the tools for proper diagnosis and treatment. Why? Question of the day as we celebrate Lyme Awareness Month.
If you know someone who is battling Lyme, give them a hug, lend them an ear, make them a meal or just be a friend. Many have lost relationships due to a lack of understanding,
If you have not seen Under Our Skin, please watch it. It is on Amazon Prime at this time. Check your local theater listing as well as sometimes there are showings during the month of May as well.
Prevention is key. Make sure that you are protected from ticks by wearing light colored clothing, socks over pants and treat with Deet products or Permethrin. Make sure to do tick checks not just on yourself or your children, but also on your pets. (I should also note that this disease is not limited to deer ticks…any insect or arthropod MAY be infected and transfer. NOT ALL DO, but they MAY.)
To all the Lymies out there, I stand with you, fight with you and pray that we will one day have a voice that will be heard. Ticks bite and we fight! (Motto from Wisconsin Lyme Network)
The Lord has blessed us this summer with spending time with extended family, to our son’s trip to Scotland and competing in the Worlds and the safety and healing of Sydney’s ankle. Now fall is here and I find that I have completely lost track of time and not written here for quite awhile. When I think about it I consider my words and realize I don’t have much to say so I think about writing the next day only to forget. Hence the problem with a blog that should be kept up weekly. 🙂
Anyway, moving forward I’m planning on spending more time here, especially with a new treatment plan coming for the Lyme and co-infections that are once again active and causing issues. This disease is nothing short of interesting. Plus, school is in session for our last child in HS . Not to mention her healing and surgeries yet to come along with her rehab. I’m sure the weather will keep us indoors shortly enough. 🙂
Anyway, if you find the time and could pray with me on my own health that would be wonderful. I’m seeing a new doctor and looking into doing some traditional treatments for my Lyme. Not sure if that means IV antibiotics or oral, I’ll find out in early Oct. This means that even though I’m bad right now, it will only get worse as the little buggers die off and we work on getting my adrenals back in working order. In the mean time I’m reading as much as I can on the meds used and making sure I understand each one.
I’m also seeing a cardiologist next week as I’ve been having some chest discomfort and some periodic pains that have been hanging around since July. I know…I should have gone sooner. Let’s just say it’s been a long summer and I have put myself on the back burner until now. Since I had some heart surgery 23 years ago it’s enough of a concern that they are working me in next week and I’m limited as to what I can do right now. No exercise and no walking long distance. Of course that order went out the window last weekend when I had to walk from the RV to the stadium for the college football game while also pushing my daughter in the wheelchair. Guess I’m still breathing and still moving around so all is well. 🙂 Praise God for the ability to keep on going and to keep focused on the things that really matter…like my family!
Anyway, I’ll try to keep up with the blogging if you would pray for my own personal healing as well. Maybe we will find some great things come out of both. 🙂
For my followers that did not get the video on the post that was emailed, please click on my title and it will take you directly to the post on the blog and the video is there. Sorry for the hassle. 🙂
