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.

May is Here! Back on Medications

After three Hyperbaric Oxygen Treatments through April, I discovered no improvement and actually felt worse after each session. The oxygen must have pushed the Lyme out of my tissues enough that it caused weekly depression spells that were debilitating. I decided that was not what I needed right now being in such rough shape. On the fourth week of my medicine vacation I found myself brought back down hill and almost into the wheelchair again. Memories of last summer's struggles filled the late Saturday night air, as I suffered from head and neck spasms, neurological upset, and speech problems. I took what medicines were on hand to calm the sudden episode from a day filled with activity that my body was not yet prepared to handle, and stayed in bed for the next two days. After the rest and much practiced handling of my symptoms, I was up again in no time preparing for an Air Force ROTC Ball. Yet again, the following Saturday night after the days events and the ball, I found myself downhill from exhaustion and suffering autistic-like symptoms and the speech problems all over again. A day later with some rest and I'm now again getting ready for prom. This is my Junior prom, my second year going and I am far more nervous than last year. Exactly a year ago I was carried home in a trembling mess with the most unexpected Lyme Disease symptoms. That gives me enough grounds to remember that frightening experience and move forward on a prayer for a better one this time. The Picc line has been in 11 months, and I am now being put on Clindamycin Phosphate for the persistent symptoms that were not touched by the Rocephin like we had hoped (along with Omnicef which I have tried once before and Zithromax for Bartonella Symptoms). Within the first six hours of my first treatment on the new medicine, I suddenly experienced a raging Herx reaction (A Herx is a positive response to medication that seems negative, better explained in my earlier post called the Herxheimer Reaction. It basically means the medicine is killing off the bacteria). It lasted for at least 48 hours and left me feeling dizzy, weak, restless, irritable, in a general state of intense pain, and nauseas. After that cleared it took me all my energy just to manage a shower and keep breathing. Since then, I have started with what we believe could be Gall Bladder problems. I had such great pain in the event of an 'attack' on Tuesday evening, I literally could not breathe and was scared for my life due to the pain. Whats worse then such a turn of events is the shock of being scared to enter the Emergency Room knowing that you will not leave with answers because you are such a unique case. That's the shocking encounter I deal with every trip to the hospital, and I have said many times that 'I would rather die in my comfy bed with my family and pets than at a hospital that doesn't know what to do with me'.

Switch of Infusion Antibiotic

My last Lyme appointment went really well, we decided there was notable improvement but we also decided, thanks to insurance coverage reasons, that I should start an every day infusion of the next level up. It's in the same family as Rocephin but it's a bit more powerful and expensive. The Insurance company approved this with the thought that I would get better with this final punch but we are unsure how the approval of the next month of med.s will go. I believe its called Invanz. Since switching, which I believe its been less than a week, I have been super tired. I've had headaches, I'm just really under the weather. I was told I need to keep on the diet 100% and I haven't been able to yet but I need to. I've been doing major detoxing which I will talk about in another post, and hoping that would help with the switch. Currently I'm trying to be patient and see if we can get me back to running and skiing.

Relapse and New Treatment- Pulse Therapy

Since the fall, I have been feeling the brunt of the first true Lyme relapse that I've encountered. i ignored the pain and fatigue and ran through it, and skied through it, and raced through it, and just kept pushing. Then I embraced the Ovarian Cyst surgery, and I just haven't recovered from that. i have been on Rifampin, Amoxy, and Minocin since the fall, and I'm not getting any better. i've exempt myself from a diet and sleep and overstressed about schoolwork and projects and running for student council president for next year. Now my whole body is breaking down and I'm at the end of my rope. I've dealt with depression, passing out, nausea, cysts, inflammation, fatigue, pain in joints and muscles, sleep issues, cramps, tingling, brain fog, euphasia (forgetting words), and so much more. My headache is back full force, and with all the New Hampshire snow storms I'm suffering from the barometric scale dancing around. I have schoolwork shooting out my ears from honors courses and I find it hard to last a full day. I've only run four days since the weather has started to permit it and I feel like I've killed my legs. I'm just sore, tense, and sick. I know other Lymies feel my pain and discomfort, and I've been so concentrated on looking and acting normal and embracing opportunities that I never had when i was home schooled from the Lyme that I just wish I could be 100% forever. I'm very distressed from the depression and I'm let down at the relapse. I've tried to have a positive opinion on things, and I've relied on books and bible studies and friends and family and quotes and positive feedback and praise to keep me going this whole time. Now it's just dissolving at the seams and I feel like crying. I try not to show this side of me to the world, I don't want them to think I'm weak. I push through a lot and this is something that whether I like it or not, I will push through as well. When I returned to the Lyme Doctor a few days ago I told him this, and we decided on a new treatment plan. Dr. Burrascano from NY treats Lyme patients with Pulse Therapy. The idea is that Lyme hides in the body, and by starting med.s for a few months and either switching antibiotics or stopping, then starting again you can kill multiple forms, stages, and types of Lyme Disease. I stopped all my medicines that are pushing the Lyme into hiding, and we are waiting for me to get as sick as possible. When the bugs are out of hiding in a few weeks we won't worry about slowly building up, we will start all four abx (Rifampin, Plaquenil, Minocin/Minocycline, and Amoxycillin) at once and hit this bug like a nuclear bomb. I have hope that this will work, even though I have a feeling the herx reactions will be tough. All I need now is prayer.

Herx reaction.

So I just started treatment of Lyme disease (Borrelia Burgdorferi) and a co-infection, either Babesia or Bartonella. Stay on the look-out for what protocols or treatments I am on....

The scoop behind the Herxeimer (Herx) reaction all began when Dr. Herxeimer discovered that Lyme, when subjected to something that harms them like Antibiotics (ABX) or the herbs that FIGHT the bacteria (spirochetes), produce a protective film. Basically its a toxin to strengthen themselves and fight the enemies. This toxin soon makes the body feel like crap, to simply put it. Like all other chemical waste, it gets filtered through the Kidneys and Liver where the bile is suppose to join up with it, and then be sort of a tour guide on its journey to the toilet. When Lyme backs up ones intestines, the bile and toxin are reabsorbed and put back on a trip to upset your symptoms, and less bile is produced because of the old stuff hanging around. This is when you are very sick, all because of the Lyme Treatment. Some peoples are worse than others, mine happens to be annoying!

For future reference to those who are curious, my Herx so far has just been a flu-like attack. I get flushed and hot (without a fever), my headache boosts into migraine mode, lights attack my pupils so I stay pretty dark, and sound provokes my extreme nausea. I get dizzy (vertigo) and extremely weak, with a bucket by my side just in case. I do not end up puking though, thank go0dness!

To help with this absolutely crumby feeling, I take a couple different substances. First I take a pill called Welchol. It is supposed to absorb any medicine or toxin, so it must be taken 1 hour away from other pills (hard to plan the day out with 5 different sets of pills and a specific spacing between). The Welchol is a cholesterol pill, so thankfully it stops the re-absorbency of Bile and Toxins. Another herbal substance is Calcium C powder. Mix it 2 tsp. to some water, chug it down, and naturally you have yourself using the bathroom and increasing Bile production (very good since more bile absorbs more Toxins). Its nasty though! I also started taking Charcoal pills since they are natural and bind to the chemicals too. I haven't determined whether they help or not yet, but I'm pretty sure they will. An M.D. usually uses it if a kid is intoxicated by a harmful substance, and they need to get it out of the body.

Well, hope you liked this and the explanations I pulled from my little brain. I have this information based on 'Under our Skin'
the film production that sums up all scientific and political battles with Lyme, and the books that my mother reads to me sometimes. Oh yeah, and the LLMD.