I am losing it.. My idiot father almost destroyed me

Since i've gone to the only person able to help me in the whole country, my idiot father thinks of that doctor (a heroic lyme literate doctor, although not ILADS trained) as a quack. He thinks that the amount of antibiotics that i was prescribed and the fact that they are long term, are going to destroy my liver and my system. I've fought with him, i brought him all the possible information and studies i could, and he only believes the absolutely evil ID doctor at my local clinic. That ID has no clue about my lyme diagnosis, the fact that it came back negative, altough with positive bands, that otherwise should've never produced if i didn't have lyme. She's a 50 year old western medicine drone of a doctor, that only knows about acute infections and never chronic (they don't even teach about chronic infections in med school, legit confirmed to me by a doctor).

What should i do? I had IV abx for a week before i had a major herx (i had a feeling of suffocation or air hunger, where i thought i was gonna die). I got a bit scared and by idiot father saw that and stopped the treatment. I can't live anymore, its not even life at this point. How the **** can i convince him? He now wants me to get a CD 57 and LTT Elispot, but the testing is just unreliable, if it will come negative, he will just get another "confirmation" that i don't have lyme.

Traneboy - I don't know how old you are - I'm assuming you're not old enough to continue treatments without your father's consent?

What about having the Dr. talk to your father? Will he come to an appointment with you?

Well, since i was born in Europe, specifically Romania, my father doesn"t know english. I have to translate everything to him.

I wish there were some subtitles for Under Our Skin for him to understand, but there aren't. I've watched the movie already 3 times, but oh well, i'm 20 years old, out of college cause of persisting symptoms i had to "fake" like they don't exist. I was on my last leg when i got to that Lyme Literate doctor, he is in a different country and i had to travel. My father doesn't even think of it as an option to travel with me to that doctor.

Yes, he is paying for it. Lyme is incredibly expensive to treat, no insurance coverage, insurance only covers AIDS or other mainstream disease, even cancer that is harder to treat isn't covered, only the first 2 stages.

Post Edited (Traneboy) : 12/18/2017 10:21:37 AM (GMT-7)

I found something, he def knows about forums where i discuss this, even in my own language. From his words "doctors dedicate up to 7 years of their life to educate themselves on diseases, so they definitely know more than you and your forum friends". Plus, the society makes its best in our country to not let or promote self healing and to seek everytime medical help if you feel bad. He goes completely by this western mentality and ignores non replicable results (as with the Lyme tests, if one is positive and 4 are negative, then it is negative).

Basically, CDC and IDSA screwed us big time. I don't know what i or any lyme sufferer did wrong to this world. I never drank and lost my liver cause of it, never had unprotected sex and got an STD or even sex at all, since i have low libido, i didn't lose money from my stupidity, i was just being a human, living outdoors and eventually getting a disease i had zero knowledge about and being told by doctors it is hypochondria. This world is way and beyond evil and cruel. I feel like i lost my life only because i was born later than than someone at the head of IDSA, who patented the crap out of Lyme and made sure no one gets his life back the easy way.

Traneboy, have you thought about following the herbal treatments until you can sort this out?

This is a viable approach too. Many have done one or the other, or both. If you don't know where to begin, post a query here and you'll get good guidance.

The elispot is actually a good test. I can't recall what bands you had on the western blot to know if they were lyme specific. If he's paying for the test, I'd do it.

CD 57 is not really specific to lyme. Other things can lower it.

http://ajp.amjpathol.org/article/S0002-9440(17)30894-5/fulltext
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0189071#sec023

Your ID doc is a moron. You might have hundreds of spirochetes if it were relapsing fever. Perhaps early Lyme. But in disseminated Lyme spirochetes are extremely rare and if what you found are truly spirochetes and not filamentous artifacts then the findings should be considered significant I would think. One of the two papers above (I forget which one, but they are describing the same study) found 7 spirochetes out of 100 tissue samples taken. Yes... Seven. That's probably hundreds of hours of labor and samples of their "preferred" tissues. Not blood. If you have not been treated, you might have a higher load of spirochetes. But if a measly 7 found spirochetes were associated with tissue pathology it would be hard to argue that a few in the blood had no significance

Air hunger and suffocation sounds like Babesia - have you been tested for that?
Seeing as it was discovered by and named after a Romanian, maybe they would have more understanding (and less wounded pride) if you tested for a “Romanian” disease.

My husband is Romanian, let me know if we can be of any help.

Traneboy said...

The irony is that it was discovered by Victor Babes, a microbiologist who isolated the parasite in the 19 century, yet we still don't even have available testing at all in the whole country in 21 century. No testing for babesia at all, I made sure to find out. Disgusting society.

Yikes! Can you get a test from your doctor in a different country? US tests are unreliable but my doctor found mine through his own microscope.