Hey guys I really need all the prayers I can get. 13+ months into treatment I was never tested for Bart. About 10 days ago I went to see my LLMD and she did another Igenex test.
Many of my friends and family are dumbfounded I was never tested for Bart last year. I was borderline for Babesia and positive for lyme ( along with high titer levels for EBV) Bart could have been my problem all along as the sign and symptoms are screaming it.
My understanding is that even Igenex results aren't 100% but hoping my LLMD will still treat me for it "empirically". I'm scared, panicked, frustrated and feel like this is a dead end road.
I really need all the prayers and hope I can that things will start to turn around from here. Things are not good.
Thank you 💚
Posted by Bartenderbonnie (Member # 49177) on :
Prayers going your way Kristyn.
Stay in the battle, believe me with treatment, you will slowly crawl out of this disgusting hole. Subtle gains, sometimes not even noticable, you will realize that what you can do today, you were unable to do yesterday. I feel your pain but I believe whole-heartily that you can and will do this.
It's not fair, it sucks and should have never have happened. The Hippocratic oath does not apply to Lyme patients and needs to change. FIGHT FOR YOUR HEALTH. NEVER GIVE UP! YOU ARE WORTH IT 💚💚💚
Here is the most comprehensive and current Patient-driven Lyme Data, that allows Lyme patients to quickly and privately pool their data to dertermine which treatments work best. https://www.lymedisease.org/2019-mylymedata-highlights.pdf
Thank you to the AMAZING Lorraine Johnson and her team at LymeDisease.org.
There is a breakdown of the most common oral and IV antibiotics used and a chart that reports the effectiness and side effects of alternative treatments.
Hoping this helps and will be thinking of you during your health battle. BB
Posted by Kristyn (Member # 51857) on :
Hi Bonnie, thank you! About a year ago I registered on that. 👍
Posted by Robin123 (Member # 9197) on :
Hi Kristyn - it takes time to discover what's going on and what treatments work for you. Each of us is unique so we need to find out what works for each of us.
I think Lyme doctors do treat empirically. Discovering if our symptoms go down from a treatment is what we're looking for.
It takes a bit of patience to go through this healing journey, so hang in there...and you can ask us questions along the way if you have them.
Posted by Kristyn (Member # 51857) on :
Positive for Bartonella and Relapsing Fever.
Posted by lymenotlite (Member # 33166) on :
Twelve years ago they used clinical diagnosis for the co-infections on me. The soles of my feet hurt when I got up to urinate in the morning and that was such an unusual symptom that I don't know what else it could be.
I don't know whether there was a bart test available at that time or not.
Posted by Kristyn (Member # 51857) on :
I've had body aches for almost a year now, it was getting worse and worse then it turned into nerve pain and my doc put me on Gabapentin. The head aches were debilitating, I had light sensitivity. 6 months ago the pain in the feet began. My anxiety, anger and depression? Off the charts. All of this screamed Bartonella.
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