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

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Traneboy
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Date Joined Sep 2017
Total Posts : 96
   Posted 12/18/2017 10:16 AM (GMT -6)   
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.

PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 12/18/2017 11:03 AM (GMT -6)   
Oh gosh Traneboy, I am so very sorry.

Obviously your Dad is not educated on lyme. I have seen this in my own family and mostly by medical people. They just don't know.

Educating your dad in lyme can be hard. What I did was I left books and articles out laying on the table or on top of my laptop. All very visible so they would read about it. I knew they would not believe me, they had shown that. I had to give them outside education.

There is a ton out there. I bet your Dad is very familiar with Kris Kristofferson. Print out about him. His doctors finally said he had Alzheimer's and he was going downhill quickly. Someone finally said it was lyme, he treated and began living again.

There is a video called Under Our Skin, lyme documentary. Maybe you can have that playing on the video where he can hear it.

I think you are going to have to think of inventive ways to educate your dad without it seeming like you are educating him.

Good luck.

Girlie
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Date Joined May 2014
Total Posts : 33907
   Posted 12/18/2017 11:05 AM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

RedLabel
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Date Joined Feb 2017
Total Posts : 217
   Posted 12/18/2017 11:06 AM (GMT -6)   
I'm sorry to hear that your own father is stopping your treatment. Why is it that you need him? Is he paying for it or are you a minor?
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 of 0

Started treatment in May 2017

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/18/2017 12:13 PM (GMT -6)   
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)


PeteZa
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Date Joined Jul 2015
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   Posted 12/18/2017 12:28 PM (GMT -6)   
Maybe you can do an herbal treatment? Would he be agreeable to that?

It still will involve costs.

Maybe you can find material on lyme in your father language and let him read that. I think the only way you will win him over is for him to be educated in lyme.

I so feel for you.

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/18/2017 12:43 PM (GMT -6)   
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.

Szabo246
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Date Joined Sep 2017
Total Posts : 505
   Posted 12/18/2017 1:09 PM (GMT -6)   
I really feel for you and can empathise with you, when I was taking abx my doctor advised to take 2 weeks, I decided to take it for over 2 months and had to continuously listen to lectures from everyone about being crazy for self treating and I mean everyone, parents, husband you name it. I then had to hear about my craziness because of my herbs and how even natural medicine can harm me, but no one offers any alternative!

What language does your dad speak I know some Romanians speak Hungarian, my husband has finally accepted that I know what I’m doing (sort of) only really because my dr agreed ( different one to first)

If your dad speaks Hungarian My husband would be happy to speak with him, not sure it would make any difference but offers there.

B99
Regular Member


Date Joined Sep 2016
Total Posts : 95
   Posted 12/18/2017 11:05 PM (GMT -6)   
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.
College age daughter with chronic Lyme who has was diagnosed two years ago with Lyme, Babesia, Bartonella. We think she was infected two years prior. Her symptoms are mainly neurological. Using antibiotic and herbal protocols.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 1353
   Posted 12/19/2017 8:24 AM (GMT -6)   
Will your dad listen to a John Hopkins researcher? This video might put him to sleep, but Zhang is pretty adamant that testing methods are poor and standard treatments are poor https://www.youtube.com/watch?v=9VMsalw7Ehw

k07
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Date Joined Sep 2015
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   Posted 12/19/2017 9:14 AM (GMT -6)   
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.

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/19/2017 9:48 AM (GMT -6)   
k07 said...
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.


I think both CD 57 and Elispot are a "joke" and just about every test that relies on immune response rather than actual bacteria, specifically in the case of Lyme Disease, is a "joke". Under the microscope there are spirochetes in my blood and since i was tested for other spirochetal infections like syphilis and helicobacter pylori, i conclude that it is lyme.

This is not a hard thing to do, it just took some basic effort. I did that, and since she doesn't (the ID doctor) see any immune response to borrelia, there's no borrelia. I also don't have inflammation, if we base it on C reactive protein response, bu there still are IL-1, IL-6, NF kB markers i was never tested and i'm sure my ID doctor doesn't even know those exist at all. What a joke of a medical system.


The funny thing, my ID doctor could see the spirochetes in my blood through the video i received and she said since its only 1 or 2 spirochetes, then it is not Lyme, since in the case of Lyme it would be hundreds of spirochetes. That is one of the "top" ID doctor in my country.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 1353
   Posted 12/19/2017 10:09 AM (GMT -6)   
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

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/19/2017 10:33 AM (GMT -6)   
https://www.youtube.com/watch?v=_JzONcuS2NU

BabsBunny
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Date Joined Mar 2017
Total Posts : 563
   Posted 12/19/2017 11:55 AM (GMT -6)   
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.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/19/2017 2:44 PM (GMT -6)   
BabsBunny said...
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.


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.

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 12/19/2017 5:55 PM (GMT -6)   
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.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*
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