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Any advice explaining why non llmds can't won' treat lyme disease to my elder relatives i live with?

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Posted 10/4/2012 1:23 AM (GMT 0)
I am in need of advice

people here have been prompt and wonderful in answering my earlier questions. a quick update

from my former posts under this name. in a nutshell got bit 4/20/1012 8 days later fell apart with 103% fever

extreme P.O.T.S and fatigue and many other symptoms got 1 month of doxy and 2 weeks of amoxycillin gradually

got better for almost 4 months and then bam hit me like an atom bomb worse than before many neurological

symptoms aroras fever pain and dizziness looks like its here to stay this time.



---- But my question here is how can i tactfully explain to my elderly family members who are pretty much taking

care of me at the time that rushing to one E.R after another and seeing non LLMD's is not going to help that their

is no quick fix for this at least if their was that chance was blown by doctors who threw the cdc bs band aid on

me and left me with chronic lyme.


Basically they are panicking about how messed up i am i am worried it may kill one of them before it kills me if i

can't get it through to them that ordinary doctors are not perfect and are not going to help cure me with a few

magic jelly beans.


i am basically broke at this point but i am however getting consultation and allot of help advising other doctors

from a awesome guy who came and rescued me from the hospital that was holding me for a week monkeying

around with my blood pressure without acknowledging the true cause. he is part of the stanford university

research department as i understand and is the founder of the open medicine institute he has an extremely

impressive resume at least. that said i am working with him as a research subject (my blood is like gold to these

guys lol).

but i certainly cannot afford long term literate lyme treatment and getting that through to my great aunt and

uncle is not going very well they keep shoving me into emergency rooms that in turn giving me small amounts of

steroids and antibiotics for sinus infections i don't have and blood pressure pills for heart attacks which is

dangerously misguided. and pumping me full of saline because they think dehydration is causing my low blood

pressure and my pulse jump 60 to 70 points when i stand up wich also not the case.


so this really can't continue i need to explain to them what's really up about lyme disease are they any videos you

would recommend showing them that would help them understand the dangers of dealing with non LLMD's and why

the cdc guidelines and IDSA guidelines are allowed to continue doing this to us?

thanks a million for any responses in advance and Be well.

P.S sorry for lack of punctuation my aroras and "jumpy" vision make punctuation marks pretty indiscernible to me

Post Edited (lymie.anon) : 10/3/2012 7:27:11 PM (GMT-6)

Posted 10/4/2012 1:41 AM (GMT 0)
It's so frustrating trying to explain this thing that makes total sense to us, having experienced it all, to people who just don't get it! Here's an interesting explanation of the controversy - this might be helpful information to pass along: http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

If your family is interested in reading anything more in-depth, I'd recommend the book "Cure Unknown" - it really highlights the entire history (controversy and all) of this disease.

In general, if I were to explain it, it would go something like, years ago, when they first discovered lyme disease, someone assumed that a short course of antibiotics would clear the infection. Somehow, no one put two and two together for a while to realize that many patients formerly treated with a short course of antibiotics who were presenting with symptoms later in life were actually still infected with lyme disease. There have been many studies showing that short courses of antibiotics are not sufficient to eradicate this infection, and there have been zero showing that a short course is effective. The problem is that most doctors are still being trained with old information about this disease - the exact why is open to interpretation - but I'd just ask your family to trust that you know what you're talking about, having experience with this disease. Also explain to them that co-infections have become increasingly common, and the bacteria themselves have become smarter, evolving due to ineffective short-term treatment (they learn how not to be killed by the antibiotics, basically), and that all of this makes treatment much more difficult.

I think the main thing you need to get across is that mainstream doctors are not well-trained in this area of medicine - however you can do that.
Posted 10/4/2012 1:43 AM (GMT 0)
The Lyme controversy is much too complex to explain in a forum.  There are many many reasons for the stance taken by the medical community against lyme.  I can tell you that Cure Unknown is a very good book that explains the reasons behind some of it.  Had I read this book before I experienced what I have in the past 5 years, I would never have believed it.  However, having said that, I walked into a neurologist's office yesterday for an EMG for peripheral neuropathy pain I am suffering from and he looked at my chart and asked me "who TOLD you you have lyme disease?"  Now, would he have ask me that question if I had cancer or any of a number of other diseases?  I highly doubt it.  This is the dismissive behavior I have received over and over again despite positive blood work, lesions on my brain, and clinical diagnoses by qualified doctors as is recommended by the CDC.  I do believe that money spent on research is the most important way to get the recognition needed to change the mindset in place in the medical community.

I have yet to find a doctor who will allow themselves to be infected with lyme, go untreated for 5 years and then allow 4 weeks of antibiotics to prove it is curable. 

Posted 10/4/2012 1:56 AM (GMT 0)
Springsjean said "I have yet to find a doctor who will allow themselves to be infected with lyme, go untreated for 5 years and then allow 4 weeks of antibiotics to prove it is curable."

I'm still looking for that "like" button!!
**Like, like, like, like, like, like!!!!** smilewinkgrin


Lymie.anon -
I would like to suggest that you refuse to take things like steroids. They will push the infection deeper into joints, tissues and other organs/systems by lowering your immune system. That would be one huge thing you can do for yourself.
Posted 10/4/2012 5:28 PM (GMT 0)
OMG Springsjean! RIGHT ON!!!!
Posted 10/4/2012 6:23 PM (GMT 0)
Maybe the video "Under Our Skin" would help. It certainly highlights the lack of information that most mainstream doctors have and the mistreatment and undertreatment that most Lyme patients receive.

It helped me explain things to my hubby. He was already very supportive, but didn't understand some of the key points - my muddled brain and communication skills didn't let me explain things coherently.

Now, after watching the movie, he's become a more assertive advocate on my behalf. Plus it makes our conversations about the illness much easier.
Posted 10/5/2012 9:08 AM (GMT 0)
Thank you to each and all for the fast and thoughtful responses!

today i decided to tell everyone i needed to catch up on sleep and couldn't really be out of bed till i did which

is true i need about 14 hours of sleep to be coherent and haven't been out of bed for more than meals or

hospitals for about a month and a half this time,

but mostly so i could take a break and make use of some little wimpy vicodin and allow my self only to think about early 90's video

games and nothing stressful till i feel well enough to have another go at them about why i don't really need to

go to the er a 4th time in 2 weeks to be mistreated by morons and just wait for my appointment with a non llmd

who will be advised by a super awesome research scientist who i can't afford but is advocating for me free of

charge in exchange for lots of awesome blood to study.

as for the refereed book cure unknown i am definitely ordering it asap i have heard good things about it before

and will take you up on that borderlyme :)


and the under our skin video sounds perfect for getting a basic understanding about the whole lyme patient

"doctor" situation. i run out of breath while talking quite easily and they are hard of hearing so a lengthy

frustrating conversation is less than adequate for both sides. so watching a video with them would be a nice

alternative for starters at least. thank you jwjjtt!


and springjean LOL actually i i must admit i have had to keep healthy sense of humor in mind while entertaining

some dark fantasies about dropping off a few of my little friends in certain unnamed idiot doctors cars to see

how they feel about the cdc statement in about 3 months after their 2 weeks of antibiotics. i know where to

find plenty of the little ******s up in my local hills where deer have been spotted with red swollen puffed out

eyes and a certain delay in their walking that i know recognize in myself. ><



well if i forgot to mention anything i will check again but i do appreciate the help from all of you


Be well!
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