https://kimmiecakeskickslyme.wordpress.com/2013/09/23/lyme-and-aca-the-herx-rash/


I have this condition called ACA right now on my upper stomach, low back, and around some of my feet after taking a bout of Clindamycin for a sinus infection not too long ago. It was the first bit of antibiotics since I moved to Georgia in January of 2015, and I now know that, due to a myriad of arising symptoms, I am not cured and do need to pursue further treatment. I see an infectious Disease Dr down here for the first time next week, after being demanded to see one by my GYN Dr. who is very sympathetic to all I have been through since I was 8 years old. She believes I have Endometriosis as a result from my Lyme disease, and I will be undergoing exploratory surgery in December to clean that up and get a definitive diagnosis. She also believes that my carpal tunnel, back arthritis, IBS, and much more is involved around the chronic disease since I stopped treatment in December 2014. This is the first time I have discussed this to my Facebook friends in over a year, and also a real wake up call that I am not out of the woods yet. I try to keep updates on my Facebook as I know many people suffering find comfort in reading others' stories.

Been a Long Time Since I Posted

It has been a long time since I have updated everyone. Basically my life had spun out of control and I needed to get a hold on things. Here is where I'm at, bear with me as my scatter-brain leads you up until the current events in my life. The Zio patch test came back fine, which is a good sign. I stopped the blood pressure medication and attended the gym on my own to restrengthen my cardiac stamina. I stopped the cardiac rehab with the heart monitors and was relieved to go back to a more normal lifestyle. My Lyme symptoms all got increasingly worse. My regimen of Clindamycin, Omnicef, and Tindamax did not do anything for me as I got increasingly worse. I just recently visited my LLMD who put me on a regimen of Paxil for the anxiety (finally working with no worsened side effects), Amoxy, Doxy (good because the sun sensitivity won't be overpowering in the fall and winter seasons), and Flagyll. These medications are supposed to attack the cystic form of Lyme, Bartonella, and Babesia. I also still take probiotics, Nystatin, Axid, and Zyrtec. I visited my hematologist who said my second Lupus Anticoagulant tests came back negative, so I have an unnamed clotting disposition that could be a problem worsened by the Lyme. It will keep me from ever getting IV medication again, or ever taking hormonal birth control. I go in for the Paraguard IUD, because it's non-hormonal, next week. Also I will stay on daily baby Aspirin to keep clotting instances from happening.

My symptoms currently include the worst fatigue I've ever felt, tendonitis, overall pain mainly in the torso area and lower back, headaches which I just got glasses to assist with, ear problems, nausea, dizzyness, fainting spells, joint inflammation, brain fog, memory loss, confusion, narcoleptic episodes, loss of concentration, anxiety/depression, and lack of appetite, Those are the major symptoms not including the occasional episode of night sweats, sleep insomnia, or muscle spasms. I can say that starting the new medications two weeks ago have already shown they are keeping symptoms from getting worse. The pain has subsided a small bit, while tendonitis worsened. I am hopeful they will work to keep me from my usual winter seasonal decline in symptoms. Currently I have been too tired to think about going to the gym. I fall asleep in classes or while driving, and go to bed as soon as I get home. I long for naps during the day, and have no motivation to move from the couch or bed, I sleep 10-14 hours a night but still want nothing more than to sleep. It's hard to hold a social life when you feel dead by nine, can't stay away to drive home, and feel like taking a nap instead of eating dinner. In fact I choose not to eat when it means walking to get the food, and instead doze off in my seat. This is a new profound exhaustion then I have experienced before. I know I need to gain cardiac stamina but just find it too hard to think about a walk or exercise. I feel distanced from many people and have to choose whether I socialize or do homework. In fact, most of the time I skip my homework and try to leave early from my new part time job because even though I'm smiling, I'm dying inside. My anxiety wake me up first thing in the morning, shaking and nauseas until I get the Paroxetine in my system. I also head to bed at night fighting depression and wanting to just never wake up. Hopefully I have more positive updates soon for all my faithful readers.

Result of the Cardiologist Appointment

I had my Cardiologist appointment yesterday and I must say, I had the best appointment possible. The specialist was incredibly compassionate and understanding, hearing me out about the fact I suffer from Lyme Disease and have been on and off of treatment for 5 years and on IV antibiotics currently, even acknowledging the port and saying the two magical words: 'I understand'. He seemed to have a few different ideas of my prognosis, and wanted to run a few more tests to see what is going on. He believed me, listened, explained everything fully, and held eye contact. These are difficult traits to have with a consultation appointment nowadays with the medical field feeling entitled and sidetracked, calling every patient a drug seeker or hypochondriac. However Dr. Lootens of Concord Cardiology was not the cookie cutter physician. He was amazing, and I'm excited to work with him on figuring out my high heart rate and heart palpitations. Currently I had a 24 hour Holter monitor on to record my heart rhythm through everyday activities, which I return in a few hours and wait a week for the results. Next Wednesday morning I have a Echo Cardiogram where they will ultrasound the structure of my heart and cancel out the possibility of physical defects. These two tests should answer a lot of questions, and if needed we can try to push the insurance company to cover the new 2 week Zio monitor, a silicome patch on the chest that is waterproof and adhered on, measuring the heart and blood pressure for two weeks straight to give a better picture of the possible problems. The hope is to find something that does not require a long term treatment. There must be something going on, as I have suffered palpitations for almost 2 years and my heart rate can reach 200 bpm with a simple moderately inclined walk at the gym in a matter of 3 minutes. Hopefully this is just the result of genetics, high heart rate runs in the females for 3 generations. Possibly the cause of not being in shape. For now I wear the monitor and hope for answers, waiting for the return to the office on the 19th.

Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.

The 'Fall' Fall

Every Fall it occurs. I should have known it was coming. The summer died in a slow wave of cool, with clouds moving in and weather changing hastily. Still I was signing myself up for activities and volunteer events. I had a great summer, full of energy and prosperity. I was working all summer, anywhere from 20-40 hours a week, and spending the rest of time dating, hanging with friends, playing guitar, riding horses, showing mini horses, and living. Then Fall hit. My life crumbled from beneath me just as the leaves did beneath my feet. The summer job ended abruptly, and my energy levels dropped. The Vitamin D I thought was working so well seems to be ineffective now. As the weeks went on, closer to snowfall, my symptoms returned one by one. I felt the fatigue, the sleep disturbances, ear ringing and pain, stomach pain/nausea, joint pain and muscle soreness/spasms. Still my condition has worsened, tendonitis, severe memory loss, brain fog, headaches, dizziness and lack of appetite. All the symptoms make it difficult to attend classes and think about my upcoming Winter season job. Today my doctor's appointment with my Lyme Specialist had me worried, as I did not know what else we did not try for medications and what could possibly be next. After a debate, he asked "What are we going to do with you?"

We decided to try a whole new treatment than the oral medicine I've been on the past two months. Instead of oral Doxy we will be doing IV Doxy, instead of Mepron we will be doing IV Clindamycin, stopping my Tindamax while my body adjusts to this major load on my system. These IV medicines will most likely beat the crap out of me, but the hope is to kill this bug once and for all so that I can move on to the next stage of my life after my last semester of High School this upcoming Spring.

So onward we venture into the cold months of a New England Winter with IV pole in tow. Hopefully my health will improve by the day and come next summer I will be able to head off into my next direction as my insurance ends.

Ups and Downs

With so many down spirals I found it hard the past few months to keep up with my blog. I do want everyone to know what is happening though. I was horseback riding 45 minutes away, which was great until gas became such an issue and a few people at the property became bent nosed about one issue or another and I had to be the better person and leave. It's too bad that people have to be so juvenile and hold grudges. On top of that, It's unfair for someone like me who tries so hard to do 110% to be treated like all I'm doing is out to be in the way. I do hope in the near future I can take my experience and find a place where I am appreciated, and can ride to exercise a horse that is getting as little exercise as myself and just needs a companion. The experience of trying to run an entire estate sale, which was very successful until the last day, was too stressful on my body. I was not yet ready to be under that sort of stress. A week after the sale ended, a 5 week process, I developed a blood clot or deep vein thrombosis around my PICC line and had to have it pulled after 15 months. Nearly all my medicine stopped for 13 days until I returned to my LLMD, and the clot was watched very closely. I have recovered for the most part but am still struggling with worsened symptoms including return of brain fog, muscle twitching, fatigue, mood swings, pain, and nausea. Just the other day I started back at square one. I am now on oral Clindamycin, Rifampin, and Minocycline. I may have begun experiencing the migraines from the Minocin again today but I need to wait a few days to see for sure. The Clindamycin is substituting the PICC medication, and we are hoping for as good of a response. In two weeks, after taking these medicines, letting my body adjust, and detoxing, I will start Serrapeptase and Nattokinase to help break up bio films and make the antibiotics more effective, break up blood clots, and also break up cysts while reducing inflammation. I hope these medicines are as problem solving as they sound, and will have to wait to see for sure. Most people who are not sensitive to antibiotics or can't take high amounts due to stomach sensitivities would benefit from these two, as they are taken 30 minutes before antibiotics and are helpful in increasing the effectiveness of herbal or prescription treatments.

On the school front, I have set a challenging but realistic goal I believe to have my High School Diploma at the end of summer, do transfer credits and CLEP courses in the fall, and attend a local college in January of 2014. Determination is all that's getting me through right now. I am finishing a Physical Education class online right now, and taking a midterm for a Chemistry course that should get me through the test for the college credit. I will be taking a transferable English credit for one of my two required English credits left, and same with Health. I should start an SAT Prep course in December, and take my SAT's in May and maybe even in the fall again. Crossing my fingers for a clear enough brain to get me through another year of school online! The tutor is a huge help, without that help I would have dropped out of Chemistry online, and I am looking forward to more time with her until December or beyond.

Minocin, Omnicef, Plaquenil, and Clindamycin

My lyme doctor has yet again switched up my protocol a bit. This time it's purpose is to get me back on some medicine that will combat the Bartonella in all it's forms. Minocin is a doxycycline type medicine that is used to treat lyme and is one of the first medications used in most peoples treatment. I have never been on doxy, but this is my 3rd time on Minocycline known as minocin. We just started the Minocin and Plaquenil two days ago and I have been on the Omnicef and IV Clindamycin for atleast  a few months. This is my thirteenth month on IV Medication, technically twelfth month since I took April off. Only two have been on Clindamycin and they have been the best two months yet. I am on my third month now and feeling pretty good. Coming off of the Yaz/Gianvi has straightened out a lot of depression symptoms, and coming off of Elavil/Amitriptyline helped my heart rate and dizzy spells. I am on an adrenal support supplement, powder magnesium, Co-Q 10 and sub-lingual b-12 to help with energy and detoxing. The grand scheme of things is hard on my stomach, but you can get a lot of this stuff that is drinkable and dissolves in your mouth to lighten the load on the gut, and increase the efficiency of the supplements. I am more energetic, cleaning around the house and getting out more. If my memory was not still blocked I would even be clear enough to start catching up on schoolwork and finishing my Biology and Spanish from Sophomore year. I am going to start a Physical Education class online to start doing something to get me back on track, and now that my visiting family has left and things have calmed down (see 'Half Brother for Christmas'), I can concentrate more on getting myself back into life. I still need to rest and take it easy, but I have even gone as far as starting to run every other day!

Post Surgery Recovery, Lyme Symptoms After Clindamycin

The count up is in full swing. Today is 12 days post surgery, and this post will be a full blown analysis of my symptoms. Too many people have asked how the surgery has affected my Lyme symptoms and vice versa, and I'd like to quench everyone's thirst for more answers. Surgery is a traumatic experience for the body, nervous system and immune system. There's many characteristics of me being someone with auto immune dysfunction that affect my recovery. First of all, I'm on an IV medication that's trying to treat my symptoms of fatigue, depression, anxiety, joint pain, muscle spasms and weakness, headaches, hot and cold flashes/sweats, insomnia, light and sound sensitivity, and so much more. Charting my progression of those symptoms is more difficult over the course of my first month of this treatment when you are adding digestion irritation from pain killers, fatigue from the narcotics and trauma induced with surgery, and of course worsened headaches from stomach pain, fatigue, narcotics, etc. It's a snowball effect caused by the initial problem, the tick borne illnesses! My gall bladder probably worked fine before Lyme and Bartonella's treatment of Rocephin through IV clogged it up. I may have never needed surgery to remove it if I hadn't introduced Rocephin due to the Lyme. What a cycle.

Another thing to keep in mind is that I have experienced prolonged adhesive sensitivity since the IV treatment. I could have had it sooner and just not noticed until my skin was red and itchy from the IV dressing. I have since used an IV 3000 dressing to reduce the allergy and been fine in the Picc Line area. However, the band aids and dressings for the stomach incisions caused worse pain and irritation than the incision itself did. What a mess! Below is a picture of the four incisions, three of them surrounded by bright red almost welted skin where the adhesive touched. As of today I decided to not use any band aids to reduce those problems. In a week I'll get another picture of my stomach and how the scars are coming along.

On top of all that I have been found to scar hypertrophically, an uncommon way that the body can scar for some people where the skin over the scar is raised and red and firm unless manually softened with therapy and vitamin E based applications. Hyper trophic scars are not common for everyone, but are similar to scar tissue build up that can cause nerve pain and experienced by many Lyme patients whose immune system is affected. (http://en.wikipedia.org/wiki/Hypertrophic_scar)

Last but certainly not least is the risk after surgery of infection that can be fatal, thanks to the low immune system Lyme gives somebody. I was concerned about this but seeing as they glued my incision closed and I didn't get the dressing wet enough to change it every day, It lessened exposure to the air and I have been able to keep the stomach clean and dry. There is a little bruising near my belly button but it's looking good and smooth. As far as the Bartonella and Lyme symptoms go, I slept literally all day yesterday and caught up on much needed rest from the past two weeks of stress on my body. Today I am more energized and appreciating my sublingual b-12 in 5,000 mg tabs That significantly increase my general well feeling. I have rested, made sure to keep up with my medicines, and taken magnesium and b12 daily. Those are the only two natural supplements that I notice a difference with. I sleep better, wake up happier, have more energy, fight less depression, and feel lighter. On the Clindamycin, I have recognized a noticeably clearer ability to process, think, and concentrate. I am still working on the memory and motivation, but that will take time and rest. I have started reading more to wake my brain back up and we are looking into a tutor to generalize my needs and get my education back on track. We are also probably applying to disability since I can't work and do school and get better. I'm just not a super woman yet.