Posted 1/8/2015 11:07 PM (GMT 0)
Tuesday I had a visit with my GI specialists, first since I had my gall bladder out. GI symptoms were my first symptoms to come on several years ago. After going to my regular Dr, a local specialist, and then another out of network specialist and hour away for almost two years it was finally decided to remove my gall bladder. There was literally no logical reason or test results to warrant it being my gall bladder, but we were out of options so it was decided it would be the best course of action to roll the dice and hope it cured the condition.
No surprise, the surgeon said it looked healthy upon removal and the problems continued. After being on ABX for 9 or 10 months my GI pain is still there but it comes and goes instead of being constant, not at all tied to food. I quit taking my prescriptions (omneprozal, and an antidepressant that doubled up for stomach pain - forget the name) and low and behold, no difference. I explained this to the Dr. and told him I thought it was lyme related all along. All but literally got laughed out of his office. On my way out, I was told there was no need for any more follow up appointments because I was not following Dr's orders. This one, I'm ok with. I don't think I ever needed him to begin with. Certainly doesn't help keep spirits up though.
Had to go to my general practitioner for a 1 year med check yesterday since I am on pain meds from them and it is required by policy. First visit I have had with him since I've tested positive for Lyme. In short, he reviewed my drug/treatment list, told me I was making very stupid decisions, being taken advantage of financially, and going in a very dangerous direction. He's let me know bluntly that I need to find a new Dr. that supported the treatment choices. I didnt expect his support, but i didn't expect to be thrown out either..... I've been seeing him for over 15 years now.
He wrote me one more prescription for the non-narcotic pain med I take (tramadol) and sent me on my way. My lyme Dr. does not do pain meds because he is already at risk with treating a disease that doesn't exist and I can appreciate and respect that. Unfortunately, we have tried every tool in his tool box (lyrica, LDN, many many other prescription and natural/homeopathic options that I can't list them all) that didn't do anything or enough. Given I am the only person working in my house, getting through a day at work is the difference between my family having a roof over our head and food on the table or not. I'm going to give the LDN another go. It really didn't do much last time, but neither did anything else. I have two more months worth from my last refill its at least cheap.
I really hope it works better. I'm really going to feel like a freaking drug addict having to go find another Dr just so i can get the one non-narcotic pain med i've found that takes the edge of when I'm at my worst just enough to put me from bed/couch ridden to being able to hobble around the office.
Since starting Lyme treatment, I have had so many new moles/blemishes appear. Well, suddenly they have been growing rapidly and showing up in "places the sun don't shine". Although I'm told this is pretty typical with lyme, my LLMD and I thought it best to get them checked out due to a family history or Carcinoma. I went to a new random local dermatologist today and got the once over. We got into my medical history where I checked all my symptoms, lyme related or not just in case they were pertinent to what she was looking at, but with the week I've had, I did not indicate I had, or was treating Lyme.
We discussed all the symptoms briefly. Did an exam and discussed the fact that I need to come back in for several biopsies. She then looked at me point blank and said " I also think we should order you an IGENIX test for Lyme disease. I have very little doubt you have it. I have several other patients that have similar symptoms who we've had the test done for and it's been positive. It's expensive, but you really should rule this out as best you can with all the symptoms your having" . My wife and I both guffawed out loud. I explained to her my week and told her I was already being treated which led to a long, pleasant, and very educated conversation about Lyme and it's tabooness (is that a word). I was amazed at how knowledgeable she was.
This sounds so terrible to say but i wish I would have had a cancerous looking mole several years ago and made my way into this Women's office before going through the years of physical, mental, financial, and spiritual hell I've been enduring.
It's been a while since I've posted and I haven't been lurking as much as I used to. I hope you all are doing ok.
Going on month 10 now (I think) of multiple heavy oral ABX combinations with minimal return and honestly, I've been struggling to have the willingness to continue taking my meds and injections with such minimal return. I pretty much sit at home because of the anxiety I now having in public combined with the absolute hatred and frustration I've developed of having to explain Lyme disease people. For now, I quit researching things n the internet about lyme and I'm basically doing everything I can to just forget about this stupid bacteria as much as I can when I'm not watching what I'm eating, downing medicine, or detoxing.
This place is so important, not only for the wealth if experience and kind members, but also just to be able to say how you feel where you know someone else gets it. My poor family is I'm sure as sick of hearing it as I a of saying it. Thanks for giving me a place to let er rip confidentially. Oooooh well. Next weeks going to be a better week. I'm sure of it :P
May all your herxes be quick ones and your brain fog be light.
Cuckoonut