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.

Sudden Onset of Abdominal Pain

Two weeks ago, and I may or may not have posted about this, I was stricken with sudden upper abdominal pain. It grew to the point where I couldn't breathe and stretched the width of my rib cage right beneath my ribs. I have felt a lot of pain in life, with the surgeries and ovarian cysts and all, but I thought that was the worst pain you could possibly feel. My PCP didn't take it seriously as it had passed after about 3 hours and said it could just be an upset stomach. With great frustration I got an ultrasound the next morning and was told that if there was anything on it, we would get a call within 24 hours. A week and half later I assumed it was clear and all was fine. Then I tried to go to bed last night, like any regular night, and it started again. After 35 minutes of it getting worse and worse to the point I could not breathe but a small gasp and I was dizzied with pain worse than the last 'episode'. I finally gathered my pride and woke my mother to beg her to haul me to the ER. We tried to avoid it at all costs but there was no way I could survive any longer, the whole car ride filled with constant moaning and wreathing in pain. I told her to just shoot me and get it over with. Basically the doctor said the ultrasound read that there were gall stones. After doing blood work and a urine test, they sent me home with pain medicine, anti nausea pills, and a puke bucket, and told us to contact my PCP again. This morning I was not able to sleep after getting home at 6 AM, and instead spent the two hours vomiting my brains out in a pink tub on the floor. We rushed to the doctors office to be sent home yet again in no rush. Obviously these doctors have not had gall bladder problems, if this is even gall bladder. I get another ultrasound tomorrow morning and meet with a surgeon on Friday. Hopefully we can get some answers and figure it all out before the end of next week. My birthday is tomorrow and I will be spending it getting up early and being in pain at the hospital getting an ultrasound for the morning. Oh joy, the life of a Lymie.

Hyperhidrosis

'Hyperhidrosis' is defined as the condition of abnormally increased perspiration, more so than is needed for the regulation of body temperature. For about 10 years, since I was just a little girl, half of the back of my left hand would on and off drip sweat. I'm not talking drops, I'm talking soak through my sheets, drench paper towels, gather into a stream on the back of my hand type sweat. It has only been on the back of one hand, and I never understood it. I do not at this point believe it is connected to the Lyme, but I think the supposed Babesia with symptoms of night sweats and endocrine problems, could be worsening it in the past five years. I went to a dermatologist when I was in fourth grade, but he was not sure what it was and had no solution for me. Deodorants have worsened it instead of helping, and I never knew, this entire time, what was going on or that there was a name for it. Every doctor I had seen said it was the weirdest thing they had encountered and had no help for me. They said I was the only patient they knew with such a problem. Recently, my PCP told me I had reversed sweat glands on my left hand, so they were on the back instead of the palm. My right hand is fine, but not the left. Sometimes in the winter it gets so bad I can't wear a glove on that hand or I sweat straight through the water resistant winter glove! This made working at a ski resort and ski racing so difficult. Finally I found my way to google and typed excessive hand sweat, and that led me to a new door opening up. I found my way to the International Hyperhidrosis Society, with information and tips on treatment and even a doctor locator. http://www.sweathelp.org/en/

I found one doctor and got a two week appointment with him, which I saw last Monday. He was quiet and conclusive but had terrible bed side manner and I will not be returning. He wrote a prescription for something to put on my hand, did not tell me anything about it, and sent me off in the matter of a few short minutes. I have an appointment saved with a doctor at Manchester Dartmouth-Hitchcock Medical Center in Manchester, NH and will be seeing him in August to get a second opinion and see what he can do to help. I hope this post may find someone else suffering excessive sweating that needs a direction to be pointed in as well.

NH Lyme Conference, 'A Team Approach'

This upcoming Saturday, the 19th, our second annual Lyme Disease Awareness Conference in Laconia, NH will take place, run mainly by the Lyme411 Lakes Region Lyme Support Group. This is an event where Doctors and other educational speakers will talk to the general public and other health officials about Lyme, its management, treatment, and a team's job to overcome it. A Lyme Disease literate MD will be speaking on Saturday, at Beane Conference Center on Blueberry Lane around noon. I'm excited to see what he will bring to the table as I have not heard him speak at an engagement like this before, and I'm sure many people will have their eyes opened to the subjects on his agenda. Julia Greenspan, a well known Lyme Literate Naturopath from New Hampshire will also be speaking on  Lyme and Tick Borne Illnesses. She was interviewed on WMUR within the past 6 months, and is a nice addition to the speaking team. Also a licensed RD or Dietician by the name of Marilyn Donnelly of Concord will provide insight into the team approach as well. Hopefully a good turn out will enjoy the speakers, and take the time to come say hello to me in my lime green flip flops and skirt.

For more information visit the conference facebook event page at: http://www.facebook.com/events/383213395052874/?notif_t=plan_user_joined

or comment below.

The Beane Conference Center is at 35 Blueberry Lane, Laconia, NH.
Hope to see you there! Event flyer below.

My Latest Visit to my Pediatrician

Hello Again. I caught a minute so I thought I'd tell the today news. I went to see my traditional PCP. Not the one that I had in the very beginning but the one I have now, the one I haven't spoke with since the diagnosis and treatment of Lyme started almost four months ago. She gave me my last Gardasil shot and was told about the C-pap machine and how my insurance company, medicaid, denied it for so long. She was really stumped, until I explained about the call we received from Dr. Grant, the Sleep Dr. He basically explained how he wrote an informative letter explaining the long term affects of sleep apnea, even if it is mild, and how much more money that will cost them in the long run if I don't start treating it immediately. I was so happy that he was that intelligent! After all, we were never on the same page about the Lyme and probably never will be, EVER! So I was happy he was willing to stick up for me. Two Claps for Dr. Grant!(later on I figured out it was all PB+J and the letter was ludicrous!)

I also followed up with her on my symptoms, the medications I am currently taking, my soothing solution to stomach issues on ABX long term. She truly thought that I would be done the ABX (antibiotics) by now, since it has been long past the regular 2/3 weeks. I understand that that is her usual guidelines that she knows for ABX, but I simply will explain that when I have had Lyme for an extended time, the Protocol is separate from catching it with the rash in the beginning. I have no worries if there will be a confrontation on this issue in the future, many say I am armed with knowledge!

For those in the Same situation with a non-believing PCP, just understand that they do not know, the do not care, and it is very hard to breech the barrier of what they learned in Medical school and worked so hard to master. They are delicate like a wilting flower and we must nurture their knowledge, not force them to relearn. With great nurturing the mind will start to bloom again and see fully what we mean, so just stick with them because as my mom says: we are paving the way for future Lyme Patients of that physician.