personal journey with lyme disease

Lyme, Lyme, go away March 14, 2012

Filed under: Uncategorized — iammorethanlyme @ 9:45 am
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I haven’t posted again in a while and I apologize.  I haven’t even been on Facebook much to chat with my family, friends and Lymie friends.  This is due to the fact that after a pretty good month in February, I crashed in March.  Lionel decided that a flare up was in order and I have been plagued with non-stop headaches, eye pain, mouth pain, joint, tendon and muscle pain and constant cramping.  Emotions running the gamut from anger to sadness and “here we go again – how much more can my family take”.  I think it is really hard to see such improvement and then watch the turnaround.  It can cause quite the disruption in the family.  My husband is great, but I think he deals with it by napping or falling asleep early in the evening.  I have given him to Lyme Spouse protocol to read so he knows that I understand how he must be feeling.  I’ve asked him if he wanted to talk to someone about it, but he said, “NO”.

I had a visit with a neurologist who specializes in Lyme (4th visit) and this time I had notes, dates, medication changes, symptoms, etc. so I felt better prepared.  After a thorough interview and a neuro exam, we talked.  Using a trainer at the gym was not a good thing at this point and doing any type of aerobic or cardio work is not beneficial to Lyme sufferers – just the opposite.  GREAT – I feel so fat and now I shouldn’t be going to the gym except for walking laps or doing my prior physical therapy exercises.  So the 45 minute bike workout probably started the flare, then my husband had a terrible sinus infection and even though I didn’t get it, I was definitely exposed to the germs in my immune-suppressed body.  That’s two strikes.  I think the third was working out on a Tuesday night and then having an early doctor’s appointment the next day.  As my daughter, Amy, took me, I decided to enjoy the day and we had a gluten-free lunch and probably got home around 3pm.  No naptime.  My body responded by kicking my ass with headaches, endless fatigue, pain from head to toe, a form of enthesopathy returned to hit my sternum, ribs, cause shortness of breath, wheezing and basically cause pain in every tendon and joint possible.  I’ve had unexplained vomiting, craving for gingerale (not a soda drinker) and issues with walking again.

The doctor was surprised when I told her that my mail-order pharmacy had stopped providing Biaxin, Plaquenil and Mepron as per IDSA guidelines (which are antiquated and useless), I had had enough of these medications.  What the hell is a pharmacy doing overriding a doctor’s order?!  But I have been on high-dose Doxycycline since December 2011 and had a stash of Mepron so I continued on those meds.  the doctor believes that stopping Plaquenil (which fights the co-infection of Babesiosis) could have caused the flare up along with the above stated thing I had done.  She wants me to continue on the Doxycycline and is sending a new prescription for Plaquenil as she has not run into this problem with other patients.  At this point, I will give my mail-order pharmacy so much crap if they turn it down.  I will also mail them an 81-page report by my LLMD on how outdated the IDSA/CDC guidelines are and call my husband’s company as they pay a lot for our insurance (as does my husband) and they should know that this is happening.  I could be better, but they are stopping that from happening.

I also have to do a whole lot of labwork as she doesn’t want to miss anything with my shortness of breath and is checking for mycoplasma pneumonia and vascular endothelial growth factor along with other tests that I’m sure are expensive.  Then I have to see a Lyme literate eye doctor in Boston due to the pain and changes in vision.  Then she wants me to go back to physical therapy but at a place that has aqua therapy as this will be much easier on my joints.  The heat and chlorine from public pools gets to me, so I started thinking of getting a pool and using natural treatments in the water and I could use it everyday and not have to look for rides to physical therapy again.  ?Can I get insurance to pay for a pool as a medical necessity?  I’m sure I can’t, but I can dream!

I really have to work on getting my permit and license, but the way I’ve been feeling, my legs cramp while in the car as a passenger.  So I will study my little permit book and get that and then when I feel better and have driven around a bit, I will go for my license.

So now that I can barely read what I am writing, I will stop here with a holler out to Lionel Lyme to knock it off! Kathi