Doctor's Appointment Updates

I haven't updated about my medical situation in a while, I guess I've been very afraid of jinxing it, as silly as that sounds.

I have been off of IV antibiotics since August, believe it or not.  My body was no longer processing the antibiotics correctly and had also built an insane resistance to them.  As soon as Dr. G took me off of them, I started to feel much better very quickly.  It was great!  I got the energy to actually sew things, I traveled to Seattle and attended PAX prime with my brother, his fiancee and my friend Josie.  That trip was very difficult and I was in a bunch of pain but it was worth it.

In October I had my appointment in San Francisco with Dr. H.  He said that there was a sparkle in my eyes that he has never seen before.  Do you know what was cool?  On my symptom check list sheet, I was able to check that I had improved in basically EVERYTHING.  I almost took a picture of my symptom check list I was so happy with it, but then, ya know, there's things on there that I don't want the general public to see.  That appointment Dr. H told me that I could take my PICC out in 6 weeks.  I started an amylose free diet to help with a build up of neurotoxins; recent blood tests have shown that my neurotoxins are tripled the amount of 'normal'.  He also recommended that we did a ERMI Mold Test at home because I had some abnormally high mold factors in my blood work as well.  Luckily, our mold test actually came back with less mold than average house holds.  The bad thing is that that means that I am overly sensitives to molds.

Shortly after the appointment, the skin around my PICC line started to blister, tear, and become very weak.  It got very bad very quickly and I ended up having to get my PICC pulled before Halloween which was AMAZING because I got to go to Scarowinds (roller coasters and haunted houses) that I typically go to every year but had to miss last year, and was pretty positive I was going to miss this year.  My PICC, as of current, has been out for three weeks.  It's awesome showering like a normal person, I love it.  Unfortunately though, the insertion site has yet to heal, it looks the exact same as it did the day that I had it removed.  It's gross.  And embarrassing.  I hate it.

Today I had my phone appointment with Dr. G.  So far so good, sort of.  He feels I'm still doing good without the IV antibiotics, but he feels that it's coming back very slowly, so we are going to start hitting it again.  "It's" coming back means that babesia, not so much the Lyme, is showing back up.  He determined that when because my body is weak it's not producing antibodies STILL, and also that my body can only tolerate antibiotics in very short bursts of time.  I am starting with two new oral antibiotics, and stopping Minocycline since I've been on it forever.  I'm also being put on a blood thinner (does Lymie out there have experience with being on blood thinners?  I've never been, so this is my first time.)  Also a whole bunch of supplements.  So far no new PICC line, which is great.

I was pretty sure I was going to have to get a line put back in, so I'm really relieved that I don't have to.  This isn't that big of a win either, but instead of an appointment every 4 weeks, he's moved it to every 6 weeks!  YAY!

North Carolina and Lyme Disease

These are actual charts from slide shows of the April 13th meeting of the Vector-Borne Work Group Meeting, talking about the growth of Lyme Disease.  Remember, just a few years ago, according to NC Health Department, Lyme didn't exist here.  The whole report also includes co-infections, like spotted fever. Anyone interested in the whole report, please let me know.  The Lyme Disease I found the most interesting.

"A concern was raised and discussion within the group concentrated on finding ways to
ensure that physicians are more aware of the incidence of tick borne illness in
the state as well as the difference between clinical diagnosis and surveillance
criteria. National case definitions are standardized, and applied mostly
uniformly across the country. Ms. Herman‐Giddens brought the groups
attention to the fact that a large part of the frustration is that there are no good
clinical tests for Lyme and many of the other tick‐borne illness.
Dr. Williams notified the group of the decision that state agencies, to protect patient’s
rights to confidentiality will not release county information until after the end of
the year. Of course, health directors will be notified of cases in their counties.
Status of Governor’s Proclamation declaring May Tick and Mosquito Awareness Month: This
item has been approved by the department, but as of the meeting date, there
has been no information on the status of this from the governor’s office.
Jodi Reber presented on the pending updates to the DPH website which will include enhanced
links for Providers and Local Health Departments as well as a section for
providers to reference for laboratory tests and questions. Orange County has a
physicians only portal, and are encouraging other counties to do the same type
of information dissemination. In addition, a variety of educational materials will
be posted for providers and health departments to share with the general public.
The group will be notified, with relevant links, as soon as these have been
posted.
Discussion ensued on the many initiatives and efforts that have been done to increase
awareness of all arboviral and tick‐borne disease awareness. Hopefully the
updates to the website will help provide more information, the proclamation will
help to bring attention to the website and the new information that will be
available soon.
Meagan Vaughn: Focus on tick borne diseases.
Focus is prevention of illness in high‐risk groups, i.e. outdoor workers, landscapers,
forestry, etc. both because of exposure and because of poor adherence to
prevention measures."

Surprise Root Canal

Since my previous post I've been to the dentist and was surprised with a root canal.  How fun.  I've been doing a lot of research, still, on the link between Lyme Disease and teeth decay.  I've had a hard time finding information that isn't posted on forums, but actual articles.  But I think I finally hit the jackpot today!  I found an interview with a dentist that describes exactly what I am currently going through.  

As I mentioned before, my cavities have been coming from the inside out, which is unusual, but according to this dentist who has worked with a bunch of Lyme patients before, the spirochetes of Lyme like to reside inside the tubules of the teeth, which is also a location where the antibiotics will not reach.  Even to what the dentist has said about which teeth Lyme typically affect first are my exact teeth.  

"It is my experience that Lyme gravitates especially to the upper and lower centrals, and to the upper and lower first molars. That's eight teeth."

I asked my dentist if he thought maybe the decay in my teeth had anything to do with the antibiotics, he didn't think so.  I do find it quite a coincidence that I haven't been to the dentist since 2006, and suddenly after being on IV antibiotics and having some of the worse Lyme symptoms I've ever had, three of my teeth have broken in less than two months.  Plus, the flagyl and cleocin IVs that I'm on turn my tongue brown and orange, so there's something going on in my mouth.

Who really knows for sure though.  I'm pretty confident that all this has to do with Lyme, yet another super fun side effect of just super fun disease.  I got back to the dentist on Monday to get the last of the area's repaired, then hopefully I'll have no more dental problems.  I'm hoping that chapter of my Lyme will be finished soon.