posted
Just saw my primary Dr. she is telling me go off abx, that if I'm not better by now I just have something that can't be diagnosed and I'll just have to live with a lesser quality of life. Needless to say I am not going to stop the abx. I just don't understand all these conflicting things. Any thoughts???
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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posted
Your doctor is F'ing insane, go to another doctor, the younger the better. They have something to proove but they also dont have an ego, they want to find out whats wrong with you.
Scary that your doc would say that. You can sue for a statement like that.
-
Posts: 167 | From Los Angeles | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
mamma ~ Touchy subject for me and probably most of us here but that doc ought to have to live with a lesser quality of life. {insert appropriate swear words here}
I'm having a really hard time not doing a long rant here. And, for sure not, at you!
My suggestion is pitch the duck into the Alligator Pit and start looking for a real one. Go and post in the "Seeking a Doctor" section to find an LLMD.
Good Luck on your way to a better quality of life.
.
So you know, I also had a doc for a long time that I thought was LLMD, it took me a long time to realize that wasn't the case and I'm starting over myself. I'll meet you on the other side, k?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
wow, that is pretty bad. I would report him to the medical board. Im sorry you had to go thru that abuse.
Back in 2000 when i was first bit and thought no bulleye no lyme and tested negative...my dr didnt give up, he kept trying different abx...and was willing to refer me to a ear nose and throat dr.
Can you get to a LLMD? The abx you were on might not be the one for you. You may have coinfections too.
what are your symptoms?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Mama, Glad to hear you are staying on your ABX.
It is very hard to digest and understand about lyme. Especially when you are feeling so sick and herxy.
Can you post under Seeking a Doctor to get some ideas of a dr. that will HELP you? There must be someone in MA, right?
Maybe it is not lyme, maybe the antibiotics are not doing me any good but you know I am ill so why dont you get off your lazy overpaid @ss, find the problem and fix it.
Is that a sentance? Never did all that well in english/spelling.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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The exact same thing happened to me. I did go off abx like the duck told me to, a few weeks ago because she thought my tremors were from the meds. I thought it was a herx. Guess who was right?
My tremors subsided a few days after going off the abx but now they are back full force. So I will start back on the biaxin/plaquenil prescription tomorrow morning with breakfast.
Hang in there! I have an appt. with a LLMD in Amesbury, MA but have to wait until July, unfortunately.
Posts: 366 | From MA | Registered: Apr 2006
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Sparky
Unregistered
posted
I've been off abx. since 2002. Homeless the entire time--LLMD's do not take indigent patients.
Getting worse, even low-income clinic docs admit as much.
But it is (so far) a slow progression (digression?). Legs hurt more, walking more and more challenging.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It's what most gp's are taught. If the doctors whould should know lyme (infectious disease, rheumatologists) don't know, how can we expect gp's to know?
If your gp doesn't accept your choice, just find one who will.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
By and large that's what I've been told as well. Imagine this, I now live in Indiana but got Lyme in Connecticut where I lived for 8 years. I'm told "We cannot help you cause we don't have Lyme here" at first you accept it and go home and prepare to live your life sick as a dog, but then you think What other disease do I know that you can't get treatment for because you don't live where it normally occurs?
I feel for you, keep at it, you'll find a good doctor
Posts: 121 | From Memphis, TN | Registered: Dec 2004
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When you get well, PLEASE write this doctor a note and remind him of what he said to you and then tell him about the treatment that got you well.
I'm getting there and can't wait to write my pain specialist who never tested me for anything bacteria/virus wise. I went to her for 6 miserable years.
She more or less told me to live with it, that it was FM/CFS, to stop stressing, get massages, try acupuncture, yada, yada, yada.
posted
karatelady, it would not do any good trying to rub that in her face, cause you can get better without any drugs in several years with cfs. So basically she could still be right.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hang in there
I don't know why GP'S are so thick headed. Mine doeasn't even want to talk about lyme. He gives me the "talk to the hand" "I don't know anything about Lyme"
I have the feeling he doesn't want to know anything about it. This is very frustrating.
Lyme isn't supposed to be in our area so this doesn't help. I would love to find a supportive Gp to work with my LLMD.
I tryed to find one once and he yelled me out of his office and said to me- "you'll never be able to find someone to help you"
Boy was he wrong. Because my LLMD saved my life.
I have heard of some GP'S who are much more open minded about wanting to learn about it.
Thank God I still have my LLMD! And God bless him.
I bet if your GP came down with lyme-He would never "settle for a lesser qaulity of life"
I'd stick with what your LLMD has to say.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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WildCondor
Unregistered
posted
You should obtain copies of the office visit and the report and then sue her for misdiagnosis and withholding treatment.
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bettyg
Unregistered
posted
Momma, I posted earlier this week on my 4-20-06 LLMD summary and 2 of my 20+ lab results. Check it out. You may get some other ideas of areas in your body that aren't "right", and might give you an idea of what needs to be done.
I have mono in Feb. 1970; boy, was I shocked out of 5 virus' in my body; 3 are EPSTEIN BARR VIRUS, plus HHV-6, and herpes simplex, plus the HOSHIMOTO thyroid.
Again, this LLMD is holistic MD; do you have one in your are? I never gave any thought to them before, but this woman really impressed me going for the "needle" in the haystack approach.
Best wishes to you; stay with those of us stuck living a lesser quality of life due to poor doctoring many of you recei ve. I have been truly blessed with mine.
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posted
Thanks everyone and your right, I'm going to stick with my LLMD, even my friends think I just have fibro and I should go to meetings! This is so frustrating that I feel like just keeping my hurt to myself because I'm sick of hearing from everyone "but you look great"!
When I first saw my primary doctor 2 years ago, she was all for the lyme disease and something must of changed her mind because now she doesn't believe, which is why I "thought" I found a doctor that could work with my LLMD.
Anyone in my area go to a primary that believes?
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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posted
Sorry to keep going on, but does anyone take an anti-depressant. She wants me to take it because I seemed depressed. I am depressed because NOONE believes I have lyme!!!!
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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posted
Depression is also a symptom of Lyme. Guess the doctor didn't get the memo!
Doctors just want to throw drugs at the symptoms of a problem!
It's infuriating!
Treat one of the symptoms and the disease will just magically disappear?
What is it with doctors???
Posts: 366 | From MA | Registered: Apr 2006
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Why don't you ask around on Lymenet for those folks in your area who have a decent pcp? I had to find a new pcp years ago when mine refused to believe that it was chronic lyme.
I asked my son's teacher who had lyme (& her sisters), so that is how I found my present pcp.
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
my duck threw me migraine meds because i had sensitivity to light and pain around my eyes , he would not let go of the migraine issue. I never had migraines. To make matters worse 3 other ducks said i had migraines!!! The best nuerosurgeon around, said flat out you DO NOT have migranes
what you have is systemic, maybe a lupus or something. He felt lyme testing was reliable :-(
The duck who threw me migraine meds then gave me an anti anxiety, because i presented with GERD. Lucky they were free samples, i still have them never took any of them.
Another Duck said i had depression, ya think!! It wouldnt be because no one could figure out what was wrong with me...in and out of ER's, kicked out of one because i wasnt sick!!
when i get better im writing all the ducks and letting them know i have lyme and they missed it.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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I had doctors and my family, who was heavily influenced by doctors, tell me to stop taking antibiotics because I was "getting addicted" to them.
Some said that I had to be cured already, even though I was still sick. Some told me I was depressed and needed therapy.
I was socially and medically ostracized. This seems to be a sad fact of this disease for so many people. I persisted anyway.
If I hadn't continued treatment with alternative medicines and antibiotics (which I eventually got off of when the timing was actually finally right to do so), I think I would be paralyzed, institutionalized for insanity(due to neurolyme symptoms that would have been misdiagnosed), or dead (and that would have been a long, slow, ugly, painful demise where people would suddenly realize I was ill but diagnose me with something entirely wrong like ALS or something).
Given those options I kept on with treatment sometimes with the blessing of doctors, and often without.
Please persist. Don't listen to ignorance regardless of what source it comes from. So called "experts" are often influenced by peer pressure from other so called "experts" and don't put the welfare of their patients ahead of professional politics.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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posted
If this doc has changed her tune, it is undoubtedly political pressure. Lymies are the new lepers. Plus, there seem to be a lot of diseases which the medical people have no help for, so they get used to saying, sorry, find a way to live with it. It is lazy medicine on top of peer pressure and political dangers.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I will keep going on, but it's hard and everyone is right, we appear to be crazy people with this "unseen" pain. I have to learn to not talk about it with others that don't believe. Thank god for this site otherwise I would feel like I'm the only one dealing with this!!!
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Damn ducks!
I am glad you have a llmd... you are right to stick with your llmd.
If you need a GP ..find a new one.
Can't tell you how many times I had ducks from various specialities tell me ...well this is it for you will never get better...
B.S.
I am making progress and intend on getting better. And with treatment by your llmd you can to...
Just ignore the quacking you hear. Let go of all their ignorant comments. I have.
I think getting angry and upset everytime someone (especially drs) says something stupid is only going to hurt my health in the end.
I believe the universe and karma will take care of their ignorance for me.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It's not necessarily a matter of finding a GP who believes in the long-term abx treatment of Lyme. Honestly, if that was the case, we wouldn't have GPs.
You want to find a GP who understands that you have researched the issue and made an educated decision to follow this form of treatment. Your GP isn't there to treat the lyme. That's what the LLMD is there for.
You just want a GP that will respect your choice and not try to undermine your treatment.
My GP just looks confused when I say I'm still on abx, says ok, and then continues on.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by mammachase: Just saw my primary Dr. she is telling me go off abx, that if I'm not better by now I just have something that can't be diagnosed and I'll just have to live with a lesser quality of life. Needless to say I am not going to stop the abx. I just don't understand all these conflicting things. Any thoughts???
Yup, thats exactly what my board certified infectious disease doctor told me after I had taken my first 3 weeks of doxy and still felt bad.
The statement badly dented a 15 year relationship. I went looking and found a llmd. Was tested and have been treated ever since.
Making babs, ehrlicia, bart & lyme & whatever we find next - my lifetime friends is not what I had in mind.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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