I had my first appointment with Dr. H. in five years. WE moved away from his location, but decided that since I was so unwell and going downwards that I should return to him.
He did bunches of blood work and I learned the following.
I appear to have Bartonella in addition to lyme and babs.
Also, I tested positive for Q-fever, Brucella, Clamydia, and I have known for some time that I test positive for EBV.
I have told my family for some time now that death is nipping at my heals.
Because I am so stoic, no one really can see the rot I feel inside of me, and the God awful non stop pain.
We are doing detoxing right now, and then I begin the cowden protocol with Riamet onboard in addition for the babesia.
That would leave me on Zith, malerone, riamet, bactrim, and cowden.
This was the plan before we received my blood work. I have to call the office for a phone appointment to discuss the plan now that my blood work is in.
This is my cross that I carry. It feels so heavy.
So sad tonight.
Mary
Please no one ask me what med I have tried. The only things I have not tried are rifampin (because I take effexor) and riamet. Everything else you pull out of the hat I have tried.
Posted by Tammy N. (Member # 26835) on :
You poor thing. I feel for you. You said it so well -- "Because I am so stoic, no one really can see the rot I feel inside of me, and the God awful non stop pain." We are invisibly sick. On one hand I think it helps us pretend we are normal in the world, on the other hand there are times we feel like we are dying and no one knows. My husband and I both have Lyme and cos, and it is not acknowledged in his family. Certain members NEVER mention it or inquire. So strange, and sad.
Hope you start feeling better. Try to take really good care of yourself. Eat the best food you can afford, take Epsom salt baths, and try to still make time for things you enjoy. It's so important for us to find small pockets of happiness. Thinking of you and wishing you well, Tammy
Posted by Hoosiers51 (Member # 15759) on :
Sorry to hear.
Have you had a sleep study done yet?
I am starting to think that the reason I test positive for sooooo many infections (Lyme, bartonella, babesia, Cpn, EBV, Strep, Mycoplasma, others) (and yes, IgM positive for the most part, I don't even worry about IgG) is that I was not getting good sleep at all!
I am treating my apnea now, and hoping that sleep will help my immune system take over. Note that I am "sleeping" for 12 hours a night, it just wasn't good sleep.
And aside from dark eye rings and daytime fatigue, I had no indication I wasn't sleeping like a normal person (no snoring, no gasping for air, no awakenings).
I am starting to think this could be why so many of us have such suppressed immunity. That, and all the antibiotics, which I think are a necessary evil right now.
One of the reasons I thought of this too, is that among people not getting good sleep, you sometimes hear them say, "I thought I was dying." Because it really feels like your body is shutting down.
Posted by lymewreck36 (Member # 4395) on :
Thank you guys for your concern. Hoosiers51, I did have a sleep study done in 2005 and have slept with a cpap since then. Can't sleep without it now.
Yet, sleep it fitfull, despite the two meds I take to get me there. People marvel that I can take so much sleep medication and still struggle.
It is now almost 2 am where I live, so must go to bed. I will check lymenet for more comments tomorrow. They are life lines for me. Each one.
Mary
Posted by Haley (Member # 22008) on :
Mary,
I'm sorry that you are not doing well. It sounds like you have a lot going on with your blood. Maybe the tests will help you to find the right combo.
Hoosiers - That's an interesting comment about the sleep study. I will finally have a sleep study in the beginning of Sept. I have not slept well in years.
I know that on the days that I sleep I feel soooo much better.
Sorry to get off the topic.
Posted by kidsgotlyme (Member # 23691) on :
Mary,
Just wanted to give a shout out to you and tell you that I will be thinking of you and hoping that this treatment will be "the one" that gets you over the hump.
Sometimes it's just nice to talk with people who understand you.
![[group hug]](graemlins/grouphug.gif)