I have not been blogging or doing much of anything beyond attending to basic survival needs (food and shelter being the big ones) and managing a whole bunch of health care issues.
I feel uncertain where I am with my healing process and haven't been writing because I haven't been clear about what is going on with my body. So today's blog entry is perhaps less informative for those seeking help in curing Lyme and more about my own process on this very dark and mysterious path.
I'm still dealing with chronic fatigue, pain and neurological symptoms. I am staying out of my house as much as possible and have moved into a tent with heat. This is definitely helping with my nausea, but little else. Don't get me wrong, I am wildly grateful for the connection my Lyme doc made about bio toxins and the digestive distress. At least I can understand what was driving me to the ER and how to avoid it. That is huge!! But what's next? Does this new doc have another miracle to hand out? I'm still waiting.
I am afraid she has put the Lyme and co-infection treatments on the back burner or perhaps she has a long-term strategy she has yet to reveal. I don't know. She isn't the best communicator. I still feel like I'm calling all the shots and I'm not a doctor, nor am I enjoying pretending to be one (even if it still seems to be my best option.)
So I'm using the Rife machine several times a week now - not quite daily yet - and I'm increasing the A-Bart tincture and taking all of my homeopathic, herbal, alternative, and vitamin supplements. I'm hurting worse than ever and having neurological symptoms. Is it because I'm being wildly successful in my treatments and creating a herxheimers or am I totally failing at this and getting sicker with Lyme and Bartonella? How am I supposed to know? Who is supposed to know?
My family doctor is awesome and I love her. When I first presented her with the genetic and stool test results from my new Lyme doc, she looked at it and said she had no idea what any of it meant. The last time I saw her, I expressed my distress and dis-ease at my treatment and she told me to give her all of the info from the Lyme doc and she would figure it out. Not only that, she would discuss my options with the Immunologist at UVA, whom I see later this month. She said I did not make antibodies to the pneumonia vaccine the Immunologist gave me and since I had an abnormal response and we will go over what that means when I see him on the 22nd. Hopefully, there will be some help for me and these two will be inspired by my case and conspire to heal me. I'm all for it!!
My GP is considering how she might be able to get a PICC line approved for me. As distressing as the idea is, I can't help but remember it's what got me over the worst of it the last time I went around with this nutty thing.
So about the house, we've added the UV light to the HVAC and had someone do some cleaning and I'm still having trouble. The indoor environmentalist suggested we get a HEPA filtered vacuum cleaner and an air scrubber and deep clean the house ourselves (not happening - but maybe we can hire someone) including wet-wiping down the walls and using lots of rags.
My next steps, slow though they may be, are to purchase these 2 pieces of equipment as cheaply as possible and begin the process of cleaning and removing smaller items from surfaces and floors to accommodate the cleaning process. Then there's coordinating the cleaning process. It's all big and I can't do much of it myself since it makes me sick after awhile, even with a respirator. I feel a bit overwhelmed, especially since all of this effort might not do it. Yikes!! However, my motto is to do the next step and not worry too much about the rest. One thing at a time and it will all get done somehow or something else will happen.
I will be calling on local friends for help and might weather out the cleaning event and wait for the dust to settle somewhere away from here. I've been invited back to Madison, WI to stay with those lovely friends of mine in their amazing house with the tempurpedic bed in the guestroom. That's definitely appealing. But for now, just the next step...
