My Lyme Saga Part II

My Lyme Saga - Part II 

8/27/14  - I am starting to lose faith in the medical community as a whole, and in their ability to tackle  a challenging case (Chronic Lyme with the complication of autoimmune disease (lupus), SubclassIII IgG immune deficiency, Esophageal Spasms and Colitis,  and allergies to a lot of medication, for starters)  such as mine. (Where is Dr. Gregory House when he's needed?????  Oh yeah - they cancelled that series...)  

      I really don't know where else to go with this. I need to get this off my chest, so I am typing it out so I can try to get a handle on this, I need to know if it is ME who is crazy….    Yesterday, I was made to feel like I have been given up on, yet again, and that I am just a nut job.   Nobody wants to treat me for this latest complication, and I've been passed from one doctor to the next, and still being passed...  I had an appointment with my PCP for a follow up yesterday, as I saw him ((Dr. P. and Dr. N.)  2 months ago for a tick bite with Bulls-eye rash and also for Lyme symptoms that I had been having even for a while before this last rash.  Dr. P's original treatment plan was IV doxy, 200mg over 60 min. once daily, through a PICC (because of my severe stomach/vomiting issues) which was approved by Dr. N  - which, if you've been following, I ended up having allergic reactions to after the third infusion, so I was sent to an Infectious disease doctor (Dr. S) She seemed good and willing to work with my case when we (me and my husband) were in her office…  We left there with hope. False hope.

    Anyhow, the doctors that I had been given names of -  I looked them up and none of them are taking new patients according to the website, and half of them are not on my insurance plan, besides.                                              

      I told my PCP (Dr. P) yesterday (8/26), what had happened at that appointment, and he came up with a new plan, of trying a cephalosporin antibiotic dripped in over 2 hours with 50 mgs. of  benadryl-IV push- 15 minutes prior,  to try to ward off any possible reaction... We discussed the fact that the only "reaction" that I could remember that had happened in the past with  cephalosporins was severe gastric pain and vomiting...  (same thing with  azithromycin) and  we also discussed that if that didn't work, I might be a candidate for  de-sensitization, since I am HIGHLY allergic to so many meds  it is dangerous for me to be around sick people, etc., since I've got "NO IMMUNE SYSTEM".....

      I explained to him how this is really freaking me out now, that I am afraid to leave the house, touch anything, breathe around people, etc... because of my Immune issues and polypharmacy allergic status...  He said how he completely understood.  He said he would go get Dr. H to sign off on the orders, and that we would get this taken care of, somehow...

     Right. The doctor who is over my PCP- Dr. H, (This IS a medical teaching hospital, which is why I picked them in the first place...) refused to approve his treatment plan/ideas, came into the room, said she was afraid I had the PICC in WAY too long and that it was going to become infected (it was in a little under 2 months), then proceeded to take it out right there in her office, sans gloves, in a non- sterile environment-  she said this was "temporary" until I get to see another I.D. dr...  

Now for the clincher - she proceeded to then say, she doesn't want to treat me for something SHE feels I may not have....WHA??????   mind you - her reasoning as to WHY she pulled it was that (A) it is a harbinger of infection (B) I'm allergic to most antibiotics (C) she is afraid I will get an infection in it and finally, (B) never be able to have a PICC line again.... again, I say... WHA??????   !!!!   ????   She then tossed it in the garbage without even measuring it...  Beforehand, when she was winding up about how it is "soooooo dangerous in my compromised immunity/ polypharmacy allergy status",   I had asked her if she was able to remove it PROPERLY, in an office setting ... She said "of course" and then asked Dr. P.  if he had ever done one before, and he said, "No, not in an office setting", then she grabbed my arm, took the sterile bandaging  cover off of it with her NAILS  (want to talk about HARBINGERS OF INFECTION??????)  and took it out...   HOPEfully it all came out, nothing broke off - because I did have a valve-like sheath that had been at the end of the PICC line- the reason my home nursing staff deduced THAT, was - while the line flushed perfectly, there always was an ever -so - slight resistance at the start, but not enough that it wouldn't go through, BUT - we NEVER were able to get a backward blood draw on it...

      Dr. H then proceeded to tell me that the symptoms (the acute ones were achy body, fever, bulls-eye rash, headache)  (the chronic ones I now experience are nausea, dizziness, tiredness, migraines, the elevated blood pressure, the SVTs, severe left knee pain/swelling and  crawly- tingling in my arms, and legs) I have been having are most likely not due to Lyme, and that I MUST have some sort of neck problem, and she kept insisting that I was complaining primarily of neck problems... Honestly?  I do not understand where she came up with this… Yes. I’ve had neck problems in the past  - PAIN in my neck, no tingling down my arms, and I’ve had EMG’s MRI’s and CT’s which have ALL RULED OUT cervical issues…. And I told her that.  She wants the records and wants to proceed along those lines, regardless... which makes NO SENSE to me,   why don't we  just wait and make things even worse??????    Wait..... WHAT????? 

       When I left - our "plan of attack" is that I am to keep my appointment with the allergist, and, "I" am to call another Infectious Disease specialist - a name I had googled under "Lyme Infectious Disease doctors"  (who I just found out today is no longer in private practice and is now partnered with Dr. D... ) and see if I can get in there to discuss my "possible" Lyme problems, but she really doesn't think this IS my issue ...I guess being bit by 18 ticks THIS season alone, and by far this is the LEAST amount of tick bites I've had per season, over the past 6 years...  and bulls-eye rashes from some of them, in total, about 20 over this same period of time (2 this year alone), does not equate to Lyme.     Seriously….As I previously said - I had saved some of the ticks, brought them with me when I was first to the doctor, and was told "we don't test them anymore, when we see the bulls-eye rash like YOU had, we can safely assume Lyme AND at least one of the other 2 tick borne illnesses, so you can just throw them away"... so I did....  (Again -To clarify - This was my PCP,  Dr. P.. and the doctor who was overseeing him that day, Dr. N (I think – I honestly can’t remember his name, but he was a male doctor I had never seen before)... who was quite concerned that I have had this for a while, since I have had many tick bites and rashes through the years, with varying degree of symptoms, and said I need to have my husband check me daily for ticks and we laughed about the Brad Paisley song, “I want to check you for ticks”)... 

       But NOW,  Dr. H is certain that the rashes I have had must be dermatologic in nature.... and all my symptoms have NOTHING to do with tick borne illness, I have c-spine problems, and I need an EMG.......    

     Does this make ANY sense????  Or am I really just the crazy one here?????    I don't want to get so sick that I can't function. I am afraid this is getting worse every day it goes untreated.....   I am SOOOO afraid...  

8/28/14  Ok now this is getting freaky....   Last night I had not one, but three rashes on my body... two of which were classic bulls-eye rashes.  Warm to the touch.  And BOTH were in places I have had tick bites before... the larger but lighter of the two on my back in the same spot as before, the other on my belly, and the plain spot (not bulls-eye - just redness) lower than that...  But I don't have Lyme (or any tick borne illness...)  No. Not at all.   

8/29/14  -  Called four I.D.doctors in the area... Nope. Nobody treats Lyme.  I was asked by every single person I spoke with "WHY are YOU making these calls?  This is your PCP's responsibility.  Besides - NO specialist is going to see you without them making the first contact/referral...."   Yes, I know this, but my PCP will not do anything more for me.  I also called three Rheumatologists - none of which treat Lyme (this on the recommendation of one of the I.D. offices - they said "your PCP and Rheumatologists are the ones who treat Lyme not us)...   Oh. My PCP, you say????  Hmm... Novel thought.  

      I also called the Board of Health in Suffolk, who cannot give me any information because "nobody treats Lyme around here"...  but did give me the name/number of the Tidewater Epidemiologist's office, who I called... left message... have not heard anything as of yet....    I also called Dr. Steven Streit's office in Howell, NJ to see if they knew of anyone in my area treating Lyme... nope.  They DID, however, refer me to IgeniX Labs, who emailed me a list of 7 doctors who treat Lyme (the proper way)  - however, they are ALL in the NOVA area, or Roanoke area.  One is halfway between Charlottesville and NOVA - that may be an option... "IF" they take my insurance... therein lies the next "rub"... most of them DO NOT, and are quite expensive... as are the treatments, which will NOT be approved by insurance if the doctors are not taking insurance.... :(    OH the Manatee....  

8/30/14 -  Just a quick, morning blog -  two of the bulls-eye rashes have faded - one is just an angry red spot now, and the red spot that was just a red spot is still a red spot.   Yes. This is my life.  You are welcome to it.