Search This Blog

Wednesday, December 17, 2008

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.

Tuesday, December 16, 2008

Let's Try again!

I decided I wanted to read again. I have been held back from my hobby of sitting down and dusting through a good horse book, and I simply picked up chicken soup for the horse lover's soul and struggled through the stories, one by one last night. I got through maybe 10/11 pages before I stopped, and figured out it took me over an hour. That is a long time for me. I used to swiftly slide page by page and finish 1/2 a book in a little over an hour. I definitely could notice some trouble and delay, but today I shall pick the book up again and not let reading be one of my many weaknesses, but one of my talents. I love to read which has helped me get so far in school. I was upset in the beginning almost a year ago when my head hurt too bad for me to finish my book. So I guess we can consider this as an improvement. I have not come far, but once I got over the rocky hill of headaches and migraines through last week, my head has hurt less than ever, just the tiniest of headaches. My whole body still hurts, and my brain is exhausted, but to pick up a book again is too nice to let this moment slip by.

It is important when you are robbed of all your hobbies, sports, talents, and health that you let yourself slowly feel back those past times. For me it was reading, soccer, and schooling. When my headaches started with Lyme I couldn't continue any of it, and my organizational skills slipped as well. Now I try hard every day to just struggle through reading something, and to pick up my home school and accomplish my days work. So much for soccer though, now I have the horseback riding to lift me up again. If you feel the way I do then pick up something you used to do rapidly and love doing. Together we can slowly pick up the pieces of a crumbled life and work through a puzzling situation. If you cannot do what you loved to do, then find something new. Something that you can feel hope with, and accomplishment. Scrap booking, Beading, writing in a journal, even creating things with Lego's. Everything we can manage is an accomplishment and a corner stone for health!
I am still no less tired but I look at a small improvement and feel hope. Please feel hope along with me. I pray hard that I'll wake up and not have a headache... after so long. pray with me, because that is where my strength comes from.

Wednesday, December 3, 2008

2nd sleep study

This post is about the second sleep study I went back for. It was hard on me to drag my tired body all the way to Dartmouth, a 1 1/2 hour drive! but I didn't have a choice. When I got there I was proud to discover I had the same night tech as last time, and this time he even hooked me up. He showed me how to use the mask, and what it did. It made me look funny... really funny. I thought it was okay at first. As I lie down and tried to sleep, after about 2 hours I discovered that I had forgotten my bedtime pills, I was hungry, Thirsty, needed a straw and some water, and I had to use the bathroom. Might as well get it all in at one pit stop. I also had to change the mask, it was killing my nose. All night long I slept maybe about 4 hours, and went through at least 6/7 masks. They all hurt my nose, and were very uncomfortable. Plus I was in a different environment, my bed was not elevated as it is at home for my acid reflux, and I was hooked up so tightly I couldn't move a muscle, or at least that's what it felt like. It was also very creepy that this guy was watching my every move through a camera, and I could hear it zooming in and out...... Freaky!

At least my mom slept well. even though she was right next to me in a tiny bed that was hard as a rock, I could hear her snoring all night long. Or pretty much all night. Whenever Wayne(night Technician) would come in she'd get up. I was surprised that she slept at all, when she woke in the morning to tell me how uncomfortable she was, may I add I was pretty jealous, I told her she slept just fine, and I don't think I slept any REMs. So I woke early, did the traditional tech test, make sure everything was working. I got ready for the day, scrubbed the gook off my body and out of my hair....Yucky stuff, I have to admit.

I was suppose to get my c-pap machine within a week. Here I am later and they say the insurance company is not approving it yet. I will have mine set at level of pressure 6. It's going to be prescribed ASAP and when I get it I'll go back to the sleep MD for a little check-up. My life is so incredibly busy, even though I am so fatigued, it still goes on.

Tuesday, October 28, 2008

My Igenex Western Blot Test Results

I'd like to point out that according to my LLMD, when your immune system is supressed by Lyme which can be evident with CD57 blood test (mine is 28;normal is 60-360) that you are not making the antibodies that the WB is looking for. This leads to a lot of false negatives.

Igenex Interpretation is based on internal validation studies. by Igenex criteria, IgM Western Blot is considered positive if 2 or more of the doubled starred bands below are present. By CDC/NYS criteria, IgM WB is reported positive if 2 of the following bands are present: 23-25, 39, 41. The CDC/NYS refuses to allow the labs to report band 31 and 34 because they were used to make the vaccine, which was only on the market a short time (people got sick so it was removed). Obviously, I haven't had the vaccine, so the reporting of these bands are imperative. The CDC/NYS decided that these were the most common bands, therefore designing a vaccine with them. The thing is that now they are not included in test results, by the request of ignorant groups. Since diagnosis by positive test results is so important to ill people, a literate MD and good test results (mine were good through Igenix, they include the bands.) are needed so we can get correct treatment. Make Sense?

Igenex IGM Result = Positive
CdC/NYS Result = Negative (if band 39 were a positive, I would be CDC Positive)

kDa. 18 Neg
22 Neg
**23-25 Neg
28 Neg
30 Neg
**31 Pos++
** 34 Neg
**39 IND(Means something is there, but not enough to call positive, but not negative)
**41 Positive +++
45 Neg
58 Positive +
66 Neg
73 Neg
**83-93 Neg
Igenex IGG Result = Negative The IGM antibodies turn into the IGG antibodies over long exposure. Indicates a long time infection.
CDC/NYS Result = Negative
** 39 Indeterminate
**41 Positive +++
All others Negative

Monday, October 27, 2008

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.

Sunday, October 26, 2008

1st sleep study

After not sleeping well for a very long time, I finally had a sleep study. They said I have obstructive sleep apnea. This can be genetic. My grandmother has it. This can also be a symptom of Lyme or co-infections. My LLMD thinks that when I'm treated successfully it will go away. I hope so. I have to get a machine and go back for a 2nd sleep study to set the machine and see how it works.

Besides that, I have trouble falling asleep and sometimes lay awake for 2-6 hours per night.

I've elevated my head (the bed inclines) because of the acid reflux. I've tried soft music, lavender, softer bed, melatonin, fans, just everything to get a good night sleep. It seems I feel my worse at night which made it hard to attend school, getting up at 6:30am.
stay posted for second study and more...

Therapy so far

  • I tried the Chiropractor first.
  • Then physical therapy.
  • Next I found Total Body Therapy, or crainal sacral therapy. This has been the most helpful for relaxing the muscles in my neck and shoulders. They always hurt.
  • Hippotherapy is the best! You ride a horse and use the motion to facilitate exercises which are fun and don't really seem like exercise when riding. It is very theraputic for me.

How it all started.....My Lyme Journey (Medical Stuff)

October 2007, during soccer season, I came down with what I believed was a bad virus. I was out of school a week, then felt OK the next week, then sick again on week #3 and went to my pcp. She presumed it was a sinus infection and I was given a Zpac. Felt somewhat better on week #4, but then sick again for week #5 and given Bactrim. I had a reaction to the Bactrim(hot flashes, flushness, achy), so we stopped it. Still feeling sick and missing school the following week so I had a CT of the sinuses. It was clear. I had pain behind my eyes, headache 24/7, sensitivity to sound and light, fatigue (we tested for mono multiple times, all was negative) and just didn't feel well. This just went on and on.
Brick wall #1- My headache was so bad and the pcp didn't want to do anything else without further testing, so she told me to go to the emergency room and they could get the test approved quickly. We traveled to the "best" brain hospital in NH, and the emergency room DR was the rudest and most unprofessional I had seen (up to that point). He said," I don't know why you are here. It's just a headache!" He actually called my pcp to figure out why she sent me and then did run a CT of my head. When it came back clear, he pulled me into another area away from my parents to wait. Then he proceeded to tell my parents that I need therapy and kids can mimic their parents symptoms for attention. I was so upset. Little did I know this was just the beginning of this mindset.
When I returned to my pcp to follow up on what to do next, because I still had this 24/7 headache, she also began talking of therapy for me (she did try me on a short time of Zoloft!). My mom stood firm and quickly changed pcp's because we obviously didn't have the same point of view on my illness.
I had been seeing a Gastro Doctor for years and was again, since this illness, having stomach pains and nausea as well as not sleeping well. After a while we finally did an upper GI(clear) and an Endoscopy(multiple peptic ulcers, bile reflux). I tried several medications, with no help for that. She finally put me on Nexium (after pepcid, cyproheptadine, and other acid inhibitors didn't help) and said I had to get to the bottom of the headaches because they must be causing the stomach problems.
Enter Pediatric Neurologist #1- He said I had "Chronic Daily Headache" and there was no test to run, no known cure, no known cause except maybe viral, and we would try and manage the headache with medications. I was a guinea pig. After he took me off the Zoloft, I tried Amytriptaline, Topamax and Depakote. Then he said he couldn't help us anymore and we had to find another Dr.
Enter Pediatric Neurologist #2- He had no real diagnosis either. He did run an MRI-MRV (clear) and told the PCP to run a thyroid test, ana, and crp. He suggested Steroids, but my mom said NO. If it is Lyme it would be a huge mistake. He said he would wait for us to investigate the Lyme. He suggested Biofeedback(another method of just dealing with it). Ugh!
So back to the pcp#2 who finally ran some BLOODWORK after 9 months! Mono(neg), Anemia(neg) Lyme(neg) ANA (POS). Physical (non eventful). Another referral....
Pediatric Rheumatologist- Right off the bat, I need counseling. It is all in my head. I had a little Fibro- like symptoms, but she didn't want to "label" me because with the right attitude and putting on a "happy face" in the morning, I could over come it! WWWWWWWHHHHHAAAATTT????? She was a nut case. I told her we were waiting for the Lyme results to come back and she said she was familiar with Lyme and I didn't have it. She did the standard blood test, but was an evil person. I won't go back. CRP was elevated, but she figured it must be lab error. Sure......
Because of the overwhelming advice to see a counselor, I started seeing one to shut everyone up! She is nice and doesn't think I'm crazy at all!
Finally MOM started reading about Lyme and how inaccurate the tests are. She finally got me in to a Lyme Literate MD. He said we have to test at Igenex to start with. He did the CD57 at Labcorp and it was LOW 28 (normal is 60-360), Igenex had a positive IGM, but negative by CDC standards. IGG was negative. So we went a step further and did a Urine Blot Assay, 3 out of one was POSITIVE. Whew.....we finally had our official diagnosis last Monday after 1 year. He also believes that I have other tick born diseases Bartonella and/or Babesia along with Lyme.
Oh what a trip!