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 BoxerMom (Member # 25251) on :
I'm sorry to hear your news, but happy you are back in treatment with a good doctor whom you feel can help you.
Good luck with your new treatment protocol! BoxerMom
Posted by Missyindc (Member # 27598) on :
That is just awful! You don't need to be stoic here - let us know if you need an ear!
Posted by lymewreck36 (Member # 4395) on :
Thanks guys. I just ate my husbands banana pudding. I was struggling with physical pain so badly, I thought the pudding would help.
It did help, but only for 2 minutes, while chewing.
Now I am wondering about living again.
Mary
Posted by Lymetoo (Member # 743) on :
OH Mary. I'm so sorry you are doing so poorly. Maybe now that you will receive treatment for bart, perhaps the light is seen at the end of that LONG tunnel.
Take care and NO... no need to be stoic HERE!
Posted by SEREN J WEED (Member # 7280) on :
Mary dear, Your message resonates so completly with me and the pain and misery that I feel 24/7 of every day of my life.
I wish I had the opportunity to treat my Lyme.
If I could get the testing you are getting, I'm quite sure I would have the same results.
I just want to say that you are very brave and strong to do more treatment after the others meds have failed.
You are an inspiration to others to keep working to beat this thing.
Good luck with the new meds and keep the hope & faith that you obviously have.
Posted by TS96 (Member # 14048) on :
Mary, I don't even know you and want you to know I'm praying for you tonight.
We all love you here.
Posted by lymewreck36 (Member # 4395) on :
Gosh guys, you make me cry. It's night time again here in Switzerland. The darkness seems to creep over my spirit as well.
I'm at a very low spot. Questioning living further...but then there are those kids of mine that need me...........
It is cruel I think...to have to live sometimes.....
I just want someone to make it stop!
Mary
Posted by lululymemom (Member # 26405) on :
I think you are very fortunate to have found out what co-infections you have. Many are treating without ever knowing for sure that is what they have.
It all starts somewhere and you are off to a good start.
I am sorry to hear about the pain, I think we can all sympathize, but now is a time to heal. The Cowden herbs are very good. The others you are on will hit both Babs and Bart.
Just remember to detox and you should do okay.
Stay strong!
Posted by INEBG (Member # 27690) on :
You are on the road to making it stop and to emerging in better health. Having undiagnosed coinfections can impede your progress with treatment. Now you know. I have Lyme, bartonella (2 strains), and babesia and have sure spent time in those lows where life didn't seem enticing. Bartonella, in particular, can mess with your mind and cause anger, despondent thoughts, and confusion. When I feel that way I remind myself that it is probably the bartonella making me think those thoughts. I hope you will have faith that you are working with a good doctor and will now get the treatment you need. We travel a similar path and can share our pain and our courage.
Posted by lymewreck36 (Member # 4395) on :
Thanks again you guys. I am very sorry when I hear from someone "I travel the same path.." because I realize that there are others out there in this kind of suffering....
Sometimes I don't even watch the news because of all the suffering I see.....
I send you all my love...I wish I could meet you all face to face to say thank you.
I went to coffee with my very best Swiss friend today.....and we talked about my dysfunctional family.
I felt so light when we parted. It confirmed to me that my mental anguish over family issues does worsen my pain, and I need to let it go, let them go.....
Wishing you all wellness, and sending my gratefulness, Mary
Posted by kidsgotlyme (Member # 23691) on :
Dear Mary,
I will be praying for you. I agree that family issues can cause more fatigue and pain. I suffer with a chronic condition (my daughter is the one with lyme) and when I get stressed, I feel it in my whole body.
Be good to yourself. Don't let negative in your life.
Christie
Posted by Tincup (Member # 5829) on :
Oh yulk! Cootie Girl!!!
Cootie Girl!!!
Cootie Girl!!!
Cootie Girl!!!
Glad you are so far away! I'd hate to catch any of that stuff from you!
You know I'm just kidding.
Actually, got an idea. Is it possible to have your appointment with Dr. H about the time of the LDA conference? You could see him then slip on down to Philly and hang out with folks for a couple of days.
Sure would be nice if you could!
In the meantime you will be in my prayers... and always in my heart.
Keep that chin up.. you can do it!
Posted by lymewreck36 (Member # 4395) on :
Hi Tin:
Sure wish I could do that. I've had my home leave in August, and probaby won't be back to the States until around Easter. It sucks....for sure.
One day we will move back, then the great idea like you have had might be realized for me.
Right now.....stuck in Germanic languages and foreign doctors.....European approach to illness......do as little as possible....let nature work it good works.
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