I tested positive through Quest with a result of 1:1024 for duncani.
Negative would have been 1:256 or less. Is this indisputably positive. Could mainstream doctors still argue against it?
I have been sick for years with no improvement from antibiotics or herbs in high/strong combos. If I keep my herbs VERY strong I don't worsen quickly, but I don't improve either. Same with antibiotics.
The only abnormal tests I've ever had are a CD57 of 16, my first Lyme western blot (CDC positive), the second test was less positive with fewer specific bands, and this babesia test.
I have other symptoms (heart and fainting issues and neuro stuff mainly) but I feel like they are related to tick borne disease. I think some of my doctors (even Lyme-knowledgeable ones) are starting to have doubts because I don't improve as expected. It's been almost 3 years and I keep declining. But I don't have anything to lead me toward any other potential diagnosis for these symptoms!
Posted by Lymetoo (Member # 743) on :
I think that would be considered a positive by mainstream Drs... but .. they don't want to treat you for it and thus may deny it.
Have you been treated for it?
Posted by Summer3 (Member # 35286) on :
Yeah, not looking to be treated for it by mainstream, I just want to know if it will prove to them that I have an infection and back up my reasoning logically for why I don't want to use immune compromising drugs to treat individual symptoms.
Is it worth mentioning this test to mainstream doctors that I see who are uncertain of what's causing my symptoms (POTS, Tachycardia, Fainting, low lymphocytes, etc.) or should I just keep it quiet and let them think what they want?
I just found out/tested positive a few months ago. In the past I did Mepron but only made it for 7 weeks or less because of elevated liver enzymes. Can't afford it now. So I'm on herbs: CSA, A-BART, Enula and may add Bab-2 by beyond balance soon.
Posted by beths (Member # 18864) on :
How about malarone? Some Drs think it's better for duncani
Posted by Lymetoo (Member # 743) on :
Wow.. you sure need to address it!!
I don't know on what to tell them. Some Drs think that babesia clears on its own. Sure, right.
Posted by Summer3 (Member # 35286) on :
I don't have a doctor that can prescribe that. It's also financially unattainable for me so I have to stick with herbs and would almost rather at this point since I already did Mepron and lots of other oral abx which didn't help (after years).
I don't think I absorb pills correctly. I think that's my main problem. Shots of B12 and shots of glutathione are the only thing that work and keep me functional.
Posted by oceangirlSA (Member # 40873) on :
Wow, those seem like high titers to me! I just read your blog and am so sorry you are doing so poorly.
There are resources where you can get financial aid for Lyme treatment. Have you looked into any of those. I can send you some links if you like.
Some people just don't metabolize drugs well, and if you have GI issues, then orals may not be absorbed properly. There are genetic tests for drug metabolism, but they are costly.
Please don't give up - I will keep you in my prayers.
Posted by Lymetoo (Member # 743) on :
I got rid of babesia without mepron, but I took clindaymcin/quinine and artemisinin/zith to get rid of it.
I don't think you could take quinine or zith with your heart issues.
Posted by CD57 (Member # 11749) on :
Why do you think you don't absorb pills properly?
Posted by Summer3 (Member # 35286) on :
Because objectively pills that should work or give clear side effects stopped doing so.
Midodrine: Doesn't raise my BP.
Rifampin: Stopped getting orange urine (and I used to get it).
Doxy: no sun sensitivity (and I used to get blistering rashes).
Food: I eat 3000 calories or more per day and don't gain and can barely maintain weight.
Magnesium Citrate: No GI problems even at 3000mg per dose.
Plus the fact that I've had no improvement in 3 years with any oral supplement, herb or antibiotic and the only thing I feel better from is injected.
Posted by MichaelTampa (Member # 24868) on :
Nothing is indisputably positive when you have docs willing to just say "there is no lyme disease where you currently live so obviously you don't have any infection/coinfection".
Posted by CD57 (Member # 11749) on :
Hmm this is very interesting. Have you discussed this with a doctor?
Posted by seekhelp (Member # 15067) on :
NO, I assure you mainstream docs will not take that as a positive confirmation of Babesia. Never have, never will. Only a positive blood smear is considered confirmatory in their eyes. Furthermore, that test alone is probably considered suspect to a degree since there are tons and tons of positives on it, including me. Either the illness is the biggest endemic ever or that test is showing odd results IMO.
Posted by Summer3 (Member # 35286) on :
Really? From Quest? I thought that was considered a "mainstream" lab. Why do doctors take an ELISA as confirmatory but not an antibody test for Babesia?
They wouldn't know I had ever treated it so how could they dispute that I don't have it if I'm showing antibodies that would prove exposure?
Plus the fact that you can't even donate blood indefinitely if you have a positive test for Babesia.
CD57 I have discussed the absorption issue with several doctors. Lyme-literate ones think I should be on IVIG and IV antibiotics but I can't afford it so I'm left with herbs for now which maintain my symptoms but don't bring any improvement.