My Lyme Saga: Part I (I am pasting this from a word doc. I had originally typed it into, as I am beginning this blog at Part II of this saga.... Just wanted to keep this part, in here, for continuity). Anyone who's been following my saga on Facebook, you've already heard most of what is here in Part I... but I've edited for accuracy as far as some of what was said to me/done to me.
6/24/14 - Went to the PCP today... brought my photo with me of the bulls-eye rash I "HAD", from the tick bite I received on 5/29/14. They took one look at it, after listening to the symptoms I have been having (just related to this bite), and said, "Yes, that is the Lyme bulls-eye- you more than likely have not only LYme, but one or both of the other 2 tick borne illness, too, as they do usually co-exist within the ticks around here"...Oh - I brought the tick that caused the bulls-eye rash with me, to be tested. They told me to throw it out, they don't need it, as clearly, I had the bulls-eye rash and symptoms consistent with Tick borne illness. And since I have had Lyme in the past, and also have Lupus, they can't even run tests on me, because they will get either a false negative, or a positive, anyhow.
So, the plan is, I am to start on IV Doxycycline as soon as they can set up having a PICC put in place. Whew. At least this will be taken care of finally, after five plus years of tick bites (Close to 100), and over 20 bulls-eye rashes (that had resolved by the time I went to see my former doctor). Feeling grateful that maybe, finally, I have the ability to get better from SOMETHING.... :) But we shall see...somehow, I have a lingering suspicion that is not going to be the case, as this IS Virginia, and the medical care I've seen so far, when it is a serious problem has been sub-par.... But I"ll stop the negativity for a moment, and just bask in the gratefullness of the fact that there is treatment and hope.
7/2/14 - After much ado about nothing, the PICC line was finally placed today. It was a little nerve wracking, insofar as at first, they wanted to do it in the "holding'" area in the middle of the surgical suite, where it is not "sterile", etc... the Floor nurse flipped. She said "this woman is immunocompromised.
You will NOT do it here, you WILL find a room for her to be in. Period". And they did. They were wonderful. Let me listen to my meditation music as they were prepping me and doing the procedure.
They actually liked my music, and thought it was a great idea, and that they may implement it for every PICC procedure, as it went well, even when they hit my heart... Yes, you read that right. The PICC line was inserted to 40''. My heart went flipping crazy. And I got dizzy. So they had to back it out. to 38". Yes, that is 2 inches.... But no harm done, I'm home, and I"m fine. It is a little sore, but that's ok. The heating pad is working fine. Now for the antibiotics. That will start tomorrow.
7/3/14 - I have had my first infusion. Not much to report. Thank God. Feeling a little stuffy in my nose, but nothing worth complaining about. YAY!!!
7/4/14 - Happy fourth, all!!! I've had the second infusion today, A little concerned. Felt definite stuffiness, and a little itchy on my arms, but that was it. Hopefully the benadryl will help that and I won't have to stop this. Fingers are crossed.....
7/5/14 - Definitely having an allergic reaction to the Doxy. :( I could just cry. Tonight, my throat was itchy and I had a hive on my ear, along with the stuffiness. Took benadryl and stopped the infusion after half an hour. Called the nurse, and they said they will contact the doctor.
7/6/14 - Going to try azithromycin, 2x daily over 90 minutes instead of Doxy. Joy. Erythromycins cause me such gastric issues... hopefully with the PICC that won't happen this time.... again, :fingerscrossed:
7/7/14 - Had first infusion today, had to stop the infusion a few times, as I was getting really nauseous. I had taken Benadryl (50mg) prior, and another one (25mg) in the middle of the infusion, and one more at the end (25 mg). I was really sleepy. and when the nurse left, I laid down. My head felt full, but not stuffy... weird sensation - almost like being in a tunnel. But no allergic symptoms. I woke up at 3:00 a.m. with the WORSE esophogeal spasms, ever. Took my meds to stop THAT. And I slept all night long.
7/8/14 - Called nursing staff to let them know what had happened last night when I woke up at 3:00 a.m. They called the Doctor, spoke with Dr. R, who said to hold off on another infusion of the Azith, Waiting on call back.
7/9/14 - Had to call the doctors office again, as I've heard NOTHING. Dr. R finally called me back, very flippant, and said "we just cannot treat you - you will have to deal with this, since there's nothing we can give you at this point". I asked her about I.D. doctors... she said she'd get back to me. About 15 minutes later, she calls back and tells me that the I.D. doctors upstairs told her that(sic - ALL) ID doctors "Do not treat lyme".... So I asked her "who does" ...she fumbled over her words, and said that I was not going to be treated,due to my allergies, that I needed an allergist - and when I asked her if an allergist would treat me for the Lyme, she asked 'So you are refusing to see an allergist?" I replied "NO - I think an allergist is a GREAT idea - but in the meantime, what do we do about the Lyme"... Her response was "Ok, then, Ï'll have my office staff get back to you with an allergist's name" and that was the end of the convo - she hung up. Needless to say, I am VERY upset and I don't know what I am going to do, as my symptoms are still here, and I really do think this is deeper/has gone on longer than just this latest tick bite... (which was in MAY, and it is now July... ) I think, at this point, I am in chronic stages of lyme, and maybe this tick bite just made things worse... IDK what to think... but I am very upset and depressed, that my doctors are refusing to treat me, and refusing to help find someone who will. WTF....
Honestly? This doctor has no idea how she has made me feel - I feel like I am worthless in her eyes. DEFINITELY not worth the effort of finding a treatment or someone that CAN treat me... Cannot stop crying.....
7/11/14 - Had an appointment with my neuro today - my normal,annual checkup. Dr Goldberg is pissed. He said Lyme cannot go untreated. He has seen, firsthand, what late stage Lyme can do... He believes in the 6-week MINIMUM Doxy treatment, not 2 weeks... and that is if it helps... otherwise, even longer treatment is necessary.... Sadly, he cannot treat me with IV, however, so he can't do it. Told me he will find someone who wil help me. Tonight I feel a little better/more hopeful.
7/17/14 - Well, I don't know how it happened, or why, but I've FINALLY gotten a phonecall/ referral to an I.D. doctor, through my primary care's office - Dr. H is the one who had her nurse call and let me know (and orders for a PICC care kit)... This, after being told by Dr. R that " I.D. doctors DO NOT treat Lyme/Babiesosis/
8/11/14 - Dave and I went to see the Infectious Disease doctor (Dr.D ) today. I am to begin treatment, again, tomorrow. She seems to be pretty good, she told us she will work with me and my allergies to git-er-done... If I have a reaction to the Doxycycline, which we will be infusing 2x a day instead of once, at lower mg's (100mg's over 90 minutes) with IV benadryl prior, she said she will continue to try other ones, until we find something I can tolerate. Whew. There is hope.
8/13/14 - After the first infusion which didn't happen until tonight, everything seems to be ok. The IV benadryl really made me tired, but I was able to stay awake for the whole infusion. I've got to take the IV line off after each infusion though, and they had to re-program the machine for me so that I don't have it dripping in continually until the next infusion... to ward off any issues. Feeling MINUTELY stuffy, but that could also be the benadryl. Wish it wasn't nighttime, though.... this was "supposed"to begin in the a.m., so I could monitor myself throughout the day - not go to bed with a potential allergen floating around inside of me. But I am not worried. I will remain positive. All good comes from being positive. :)
8/14/14 - Had the second and third infusions today. Not good. During #2, I had a sort of prickly-itchy sensation going on in my arms - like there was an unsharp mosquito under my skin, every here and there... but that was the only sensation I had. So I chose to try the third infusion, tonight. Bad move. After the first 5 minutes, I was prickly again. So I took another benadryl (oral) and continued with the infusion. After 15 minutes, I was not only prickly, I was stuffy, AND the inside of my ears started itching, along with the back of my throat. So I stopped the infusion, gave myself yet ANOTHER IV push of the benadryl, and took off the pump. I am disgusted with my body. It is continually going against itself, failing me. Well, I'll call the doctor in the morning. Hopefully we can switch to the azithromycin with maybe 50 mgs of benadryl prior... just to be safe... But I"m sure she will come up with something. She said she would.
8/15/14 - still waiting to hear back from Dr. D. .....
8/16/14 - finally got a message back from Dr. D (I was in the bathroom when she called and did not hear the phone ring)... Apparently, I am not sick enough for her to treat me... Her message seemed to be paradoxical and she kept contradicting herself - she says that "I don't treat chronic Lyme", but then says that my symptoms seem to have resolved (WHAT?) and that my body probably has fought off the bacteria with its own immunity, anyhow.... Wait. it's OWN immunity??? I have immunity???? Since when??? I've been on prednisone for over 2o years, and I've got Lupus, plus an IgG subclass III Immunodeficiency, (that - again - my doctors have refused to treat because they "don't really know what to do")... But my body has fought it off. Riiiiiiiiiiiiiiiiiiight. THEN she said that since the "rash" was over a month ago, and she didn't see it, that if I persist in "thinking" I have Lyme, then they would have to do a spinal to see if it is CNS Lyme... (Like she's trying to SCARE me into not seeking treatment)... She then proceeded to SAY "The testing and treatment can be worse than the disease itself, so I don't want to treat you... I am not a Lyme expert, but I am sure your issues are now resolved... If you get ANOTHER bulls-eye rash, or have another tick bite, then I would have to think about desensitization... but that is also very dangerous in your case... " SO, I called her back. She repeated EVERYTHING she said in her message, and INSISTED that I no longer have Lyme... and when I questioned her as to how that could be possible given my immunological STATUS, she had no answer other than "well, it is possible" - and when I asked her what she would do if I had a cut that got infected...would she opt to not treat THAT because it was just too much work to find something that works, and let me either lose my foot or die... She responded with " ÖH that is different". WHen I asked her "HOW is that different"? She fumbled over some words saying "well, it just IS".... and then said,she would have her office call me with the name of some doctors at UVA that "MAY"treat Lyme... In Charlottesville, and at Duke. In NC. 3 1/2 and 8 hours away, respectively. Yeah. THAT is going to work with my dad living here... Right. Ok then.
So, about 2 hours later, her office called me with four names @ UVA, and NO names at Duke, just the "Duke referral service" number. WHen I asked to have my appointment in 2 weeks cancelled, I was told "Oh no, keep that appointment anyway".... WTF.... WHY??????? I do not get any of this... She SAID she would try different antibiotics, when I was there, WITH MY HUSBAND... and now that has all changed. Seeing many patterns here....
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