Updating the map

Sorry folks, I have so much information I have gained through my terrible experiences and I haven’t been doing a good job of trying to share that knowledge and document it and share it with you.

It’s been so long since I have been able to post anything worthy on this blog. When you suffer from tick born infections, being able to complete tasks that used to be simple like writing blog posts becomes hard. My memory is also full of the effects of the white matter lesions where the bugs have attacked my brain. And being sick is harmful to the organizational skills. right now my vision is giving me trouble, my head feels like it is exploding and I just want to nap. But I am compelled to get back to writing no matter what. Because this situation needs to change. and the people suffering from these tick borne infections need to be able to find the information they need to help themselves. Likewise, healthy folks need to know how to properly protect themselves, and we sick suffering people sure could use you healthy folks to help us raise awareness and the outrage needed to change the fact that these diseases are basically ignored while hundreds of thousands of us suffer needlessly and greatly. I need to do my part by better sharing my experience and the facts as I know them. Something good needs to come of this nightmare my family and I have been living.  So to kick off my return to this blog, an update on where I am at in this healing journey.

For roughly 7 years now I have been incredibly ill. I have Neurological lyme disease, babesia, rocky mountain spotted fever, anaplasmosis, bartonella, mycoplasma, and several viral infections like Chronic Epstein Barr Virus and Cytomegalovirus. All of these are attributed to the multiple tick bites I received right inside my own home. For the first few years, I saw over 20 different physicians who first misdiagnosed me or didn’t diagnose me at all. I have a tremendous list of misdiagnosis ranging from the ridiculous notion that I just had allergies to Multiple Sclerosis. Eventually I began testing positive for these infections and ultimately was bitten by another tick and got a bullseye rash. Then, I was finally treated with a round of doxycycline. But by then, the infections had spread deep into my body and were hard to get rid of. Doctors began to say that none of my numerous tick borne infections could be making me sick as I had a round of doxycycline. (there is plenty of research to show that a short round of doxcycline will not be able to cure chronic infections like mine were allowed to become.) Doctors continued to order odd tests and search for an alternate diagnosis. I continued to suffer and my health and ability to function continued to decline. I eventually saw an Infectious Disease Doctor at a teaching hospital upon the recommendation of my General Practitioner who didn’t know what to do for me.

This Doctor was the first to find my Rocky Mountain Spotted Fever infection by blood test. However, he said the round of doxycycline I had would have fixed it, and it therefore couldn’t be the cause of my illness. He thought I had MS and sent me to a Neurologist at the same teaching hospital. The Neurologist, who was a specialist in MS did multiple MRI’s, a spinal tap, and various other testing. The MRIs found several white matter lesions in my brain and other neurological irregularities including an Empty Sella. The neurologist ruled that I most definitely did not have MS. I was suffering from multiple tick borne ilnesses. In addition to the white matter lesions and other symptoms, the tick borne infections were causing demyelination of my nerves, causing the MS like symptoms. It was good to have someone take the MS possibility off the table, but sadly the Neuro was not able to treat my infections. He suggested I return to infectious disease. When I did I was again told my positive tests for Lyme, Anaplasmosis, and RMSF couldn’t be the cause of my illness. I was told he just didn’t know what else to do for me and given a prescription for lyrica.

At this point I was so sick I could barely hold onto 1 job or care for my children, let alone myself. I had intense pain everywhere (nerve, bone, muscle, and joint pain), a deep exhaustion unlike anything I ever experienced, constant nausea and stomach pains, muscle tremors and twitching, brain fog so bad I could no longer remember basic functions like pumping gas or where I was driving, a deep need to sleep coupled with insomnia, constant low grade fever for 3 years, terrible inability to control my own temperature (I was always frozen or sweating, or as my partner liked to tease, “my porridge was never right”,)and every night I would wake up in a soaking wet puddle of sweat. I had lost over 80 pounds and so much more. There were more and more days I couldn’t even drag myself out of bed. Honestly, while I was determined to fight to the end, I really didn’t know if I was going to make it. I would say my ability to function was at about 15% of usual. It was truly terrifying. I felt hopeless and as if I had exhausted all standard treatment measures and many alternatives. I decided to see a Lyme Literate Physician. These Doctors generally treat and diagnose tick borne disease beyond the ridiculous guidelines of profit minded insurance companies. Therefore they do not usually accept insurance, and can even be hard to find in some states where they risk losing their medical licenses for following the science and helping suffering patients beyond very limited guidelines (more on all in future posts).

The Lyme Doctor I saw absolutely saved my life. I already had CDC positive tests for Lyme, Anaplasmosis, and RMSF. and EBV, CMV, and Mycoplams. He then added clinical diagnosis (based on symptoms as even the CDC now recommends due to inaccuracy of testing) for babesia. He began treating me with huge combinations of oral antibiotics, including the anti-malarial medicine mepron for the babesia. I would slowly begin to improve and then after two or three months my progress would seem to get even slower and we would change up the combinations of medicines. After several months I was taking an absolutely insane amount of pharmaceutical meds, and of course, then I needed additional meds to counteract the side effects. I was taking over 20 pills multiple times per day. My stomach was a mess from so many pharmaceuticals. My Lyme Doctor decided to put me on IV antibiotics and I got a PICC line put in my left arm. I took IV Rocephin and multiple oral meds for the babesia for an additional 7 months. There are some posts about this here on the blog.

About 6 months into the IV, 11 months of total treatment with the LLMD, something miraculous happened. My twice weekly labs had shown high white cells and platelets for almost 5 years at this point. One day, my blood counts came back and my white cells and my platelets were both in the normal range! I was shocked. My General Practitioner asked me if I thought we should frame the clear blood count and hang it on his office wall in celebration. Finally something was working! Of course, that was too good to be true. I had finally been improving. the night sweats were gone, the brain fog was clearing, the tremors and shakes and twitches were subsiding. I also began to add herbs to my protocols. I researched and found herbalist Stephen Buhner’s protocols and began to add them. I now felt like I was back to around 40% of my healthy self.  About a month later as my slow and steady progression back to wellness continued I suddenly had a setback. I was even more lightheaded than usual, and then I began alarmingly having trouble with basic motor functions and repeatedly walking into walls. There was terrible pain and ringing in my ears. Then my LLMD’s office called with my latest blood counts. My blood glucose, which was normal every 2 weeks prior to this had suddenly jumped from normal range (up to 99 being normal range) to 199. This sudden increase in blood sugar coupled with the newest symptoms, left my doctor a little baffled. While there are other IV antibiotics to treat tick borne infections, he wasn’t comfortable prescribing any of those for various reasons. He felt that my blood sugar increase was due to the IV antibiotic and he pulled my PICC line and stopped the treatment. He then said he didn’t know what to do for me except try prescribing oral doxycycline again.

LLMD’s are expensive. My visits were costing my family around $500 per month. I had been seeing him for just over a year. It was early February, 2017. I did more research and more thinking. Lots of talking the possibilities over with my family. We decided I would stop seeing the LLMD and continue to treat myself with herbs. My General Practitioner didn’t know how to treat me, as my illness is quite complicated with so many pathogens all allowed to fester for so long. Yet, he did understand the truth and the science. In fact, he was upset that the LLMD had stopped my IV treatment when it seemed to be working so well. He still felt that progress was slow but finally moving more solidly in a forward direction. He didn’t know anything about the herbal treatments I was now trying to follow but he supported the choice to try it and agreed to do blood work etc. that I needed in the meantime.  I got a blood sugar meter and began monitoring it myself. It was all over the place throughout the day with no rhyme or reason. I continued treating myself with Buhner protocols for all of my infections.

For a couple of months I was feeling a bit better with herbs. I was probably hovering around 50-60% of my healthy norm. I honestly felt the best I had felt in 7 years. I still didn’t feel great, and just sourcing, preparing organizing, and eating all the herbs had become a full time job in and of itself. But I finally felt like there was hope and that I could one day have some semblance of a life. I have a weak stomach that was made worse by my illnesses. I had seen a nutritionist and made some improvements so that I stopped teh crazy weight loss from early in my illness. I didn’t gain any weight and still suffered from terrible nausea. general lack of appetite, and other stomach problems on my very limited diet. But at least I hadn’t gotten any worse. In July, I started to feel worse again. My appetite and nausea were awful. The neuropathy was coming back in my hands and toes. The sensation of someone sticking a cattle prod deep in my bone and pressing the button repeatedly became an all day sensation again. I was exhausted. My hands didn’t work and I couldn’t hold books at work, wash dishes at home, or open containers again. My head was killing me. Just a general, all over worsening of my symptoms. at the same time, I suddenly no longer wanted to swallow the herbs. I had been taking about 100 different capsules daily for months. Suddenly I could barely force myself to literally choke down any of them. Often, even when I did manage to get the capsules in, they wouldn’t stay in. Staples of my very limited diet lost their appeal and I felt like I had nothing left I could eat.

The slow return of symptoms you had a short reprieve from can be absolute hell. It can make you lose hope fairly qucikly. Especially if you don’t feel like you have very many options left to heal. tick borne illnesses like to make you feel this way. It was a bleak summer. In August, we took our 15 year old to a theme park and rode every giant roller coaster as many times as we could in one day. It was one way I had to say that I still had to find a way to live. a day to try to be the mom I used to be before I got sick. I knew I would feel even worse for a few days after. I worried it would have a very negative affect on me. My partner and I half joked that maybe the g forces would wake up some of the hidden bugs and shake them loose…making them come out of their hidden cyst forms so my immune system and any herbs I managed to get down could kill them off. We had so much fun that day, and I somehow managed to drag myself to the car at the end of our good time.

All fall I continued to get worse and near the end of October I gave up trying to take the herbs. I was rarely keeping down any I managed to swallow anyway. I also had a persistent lung infection and all sorts of difficulty breathing again all fall. I thought it was mycoplasma or babesia getting worse. My GP made me take some antibiotics anyway but they didn’t help. I thought I needed to listen to my body, that maybe it needed a break. I tried to stay hopeful, but it was getting harder and harder. I started waking up at 3am again every night like I had in the early years of my illness. In pain and miserable unable to do anything but curl in a fetal position and wait it out. In early December, I was curled up on my couch at 3:30am. It was once again my new normal. Then suddenly I felt the oddest sensation in my belly. It was best described as a fluttery feeling. At first, I thought it was some sort of fun new gas pain. Then I felt it again. And then a third time. I had felt this feeling before but never imagined I would be feeling it again now. I tried to convince myself it was gas pain. But it became harder and harder to believe as the night wore on.  This fluttery feeling in my belly felt exactly like the way it feels when a baby kicks you. I felt like I must just be being crazy, awake in the middle of the night.

As soon as morning arrived I went to the store and got a test. It was positive. I was in such shock. How could this be? My partner, who never intended to have kids, was even more shocked then I was. We made the quickest appointment we could get, and a couple days later we went to Planned Parenthood. They did an ultrasound and said I was 27 weeks. It took weeks and weeks to adjust to this information. We wondered how we could possibly parent when one of us is sick and one has a broken back. We’re old. Our kids are old. The baby could be sick. That was probably our biggest fear, that the baby would catch some of these pathogens from me. Of course, there is very little research on how best to prevent transmission of these diseases. Not to mention that for 7 months I didn’t know that I was pregnant I had barely eaten, taken tons of herbs, had blood sugar problems, and ridden roller coasters. I stepped up my game and even added dairy back into my diet. I forced myself to eat as much as I possibly could. We planned what we would do if the baby had problems. I went to an OB as soon as I could, but the OB just kept saying I had been treated for the infections so the baby was fine while I kept trying to explain all or almost all of my infections were still active and not adequately treated at all, it was to no avail. (I had no choice of providers, as most could get me an appointment until about the same time as the baby was due…in March.) we prayed and hoped for the best and launched a flurry of preparing and honestly just adjusting to the shocking news and what was about to be our new reality.

On March 8, 2018 we had a beautiful little baby girl by scheduled c-section in the middle of a tremendous blizzard. The high risk specialist a month before (I had been referred solely because I am 42) had said she would be an average 7 or so pound baby. Yet when they put her on my chest in the operating room I was overcome with how tiny she was. She was only 5 pounds 9 ounces but blissfully healthy. Today she turned 6 months old and continues to be the most amazing miracle we never realized we needed. So far she is as healthy as can be. She is incredibly happy and smiles and giggles almost all the time. She loves food and has spent her first six months catching up on her tiny size. In a small piece of kindness from the universe she also has slept all night since she was born, which is an incredible gift to a chronically ill mom who doesn’t function well with no sleep.

We’ve had to make parenting choices we never would have if it wasn’t for the fear of her catching these illnesses. She only had formula as the pathogens can all be transmitted by breastmilk. Hopefully she is building a healthy and happy immune system that will be able to continue to stave off any infections she may have gotten from me. In the meantime we watch her constantly for strange symptoms and of course constantly monitor her for ticks. Every stray speck of dirt is examined  as it might be a tiny nymph tick. She continues to thrive under our concern, rolling over at 4 months crawling (but backwards) at 5 1/2 months. Before we know it she will be a toddler running around.

In the meantime, I had an incredibly blissful reprieve from my symptoms the last trimester of pregnancy. I was left with an almost complete end to my symptoms other than my crushing fatigue, all over pain, and lack of appetite. Sadly, as is often the case with these infections, the bugs are now all coming back with a vengeance. Now I struggle to return to my intense herbal treatment regimens as killing too many pathogens too fast can make one sicker (In which case I might not be able to care for the baby properly) Perhaps if I can get back to taking all of them after a few months my symptoms will begin to subside and eventually clear. Because I am not sure what other options are left after this long journey. In the meantime we enjoy every minute we can with our daughter and our awesome older kids while hoping and praying she will remain healthy, and that I will remain healthy enough to care for her.

Now I’ve given you an update…now I can get back to the important posts. Sorry the update was so long, it has been a long bumpy journey that is hard to  summarize.

 

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