posted
I had a very bad bout of acid reflux the past 4 days, unable to eat or drink anything because of the burning. It was causing my COPD to worsen and my breathing was challenging. Probably lyme.
I have only recently been dx'd. with lyme but no treatment yet.
My primary doc doesn't know how to treat lyme so he referred me to an Infectious Disease doctor in another town.
I told this doc I had a positive IgG lyme test and she said she doubted I had lyme, Texas had no lyme, and she suggested I see a Psychiatrist about behavioral therapy.
She refused me treatment based on the fact that Texas has no lyme, what a FOOL!
I argued with her, told her she was wrong and I didn't come to her for a diagnosis, rather urgent medical attention for my condition.
She put on her rubber gloves to look in my mouth. She must think/know it is contagious, hmm.
She asked me to send her a copy of my lyme results and I told her I wasn't sending her anything since she refused to treat me.
She told me the crap about antibiotics and said I should go ahead and see an LLMD if it would put my mind at peace. I told her I was and as far as I knew antibiotics hadn't killed anyone.
Anyway, it was an awful experience, one I had read about here on the forum before but I wasn't prepared for what she was putting out.
It was left at that and now my daughter is wanting me to sue her, for what??? My daughter has lyme, too, so she took this personal.
I am sorry everyone with lyme gets treated this way. It is not right and it's inhumane.
Posts: 245 | From Texas | Registered: Jul 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
lady,
i had a similar experience and i was infuriated at the ID's office.
fuming i went home and sat down and wrote a long letter and attached copy of Dr. B's guidelines, explaining if they read it, other people could be helped.
imagine, lay persons like ourselves educating our doctors who have a license to treat people!
now THAT is scary.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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And this is from one of the TX lyme disease websites: 'Failure to report is a Class B misdemeanor under the Texas Health and Safety Code, Section 81.049, but this provision is rarely, if ever, enforced.'
Posts: 758 | From now TX | Registered: Mar 2001
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posted
I live in Mt. Pleasant, 100 miles east of Dallas. The infectious disease dr. was in Longview, TX, she is not an LLMD, obviously.
I don't know if my LLMD reported me to the CDC or not, he never said but the infectious disease doctor said I could not have lyme because lyme is not in Texas. SPAZZZZZ!
I would enjoy reporting her to the Texas Medical Board but on what grounds -- that she refused to treat me or because we both had our opinions on lyme and they differed?
Maybe they don't want lyme in their hospitals, reckon?
Posts: 245 | From Texas | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Ugh.. sickening. I got bit (reinfected) in my own back yard in central texas. I know several people who contracted Lyme disease here (some have never even been out of the state of Tx!)
I can't stand doctors like the one you saw. Unfortunately.. there are LOTS of em just like her in pretty much EVERY state.
I'd absolutely file a report with the medical board. Maybe that will perk her ears up to whats going on around her!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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WildCondor
Unregistered
posted
Stay away from Inf.disease doctors, they don't believe in Lyme disease or know how to treat it. Of course there is Lyme in Texas. READ up on LYme!!! You have lots of homework to do here to educate yourself.
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posted
I will do that, WildCondor. Thanks!
Posts: 245 | From Texas | Registered: Jul 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
We recently saw an ID doc to have my son tested for EBV.
Anyway, I told him he had lyme, don't know why I even brought it up because I knew what kind of reaction we would get.
He said he could only have gotten lyme in New England or Wisconsin.
I guess the ticks pole vault from New England to Wisconsin, since we can't catch lyme anywhere in between.
I even showed him the drs report detailing the multiple EM rashes on my sons ankles.
EM rashes he got in Arkansas at camp. But we all know there's no lyme anywhere but New England or Wisconsin
He said EM rashes don't necessarily mean lyme!!!
I'm not making this up; he really said that.
At least my son tested negative for EBV, the reason we went to see this moron in the first place, but I am even questioning the validity of that test result from someone so clueless.
Hopefully the lab was accurate.
Sorry you had to be subjected to such treatment.
Good luck!
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Linky123, I'd ask for a copy of the lab results each time I visited my doctor.
Another poster here found several abnormal readings on his lab results that his doctor missed.
I think the doctors are so rushed they only look at the critical numbers and let the rest slide.
My rheumatologist dictates 4-5 pages of notes every time I see him. I ask for copies, otherwise I'm never told any of my results unless something is off the charts.
I feel like I pay for the report and I want a copy.
Posts: 245 | From Texas | Registered: Jul 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Consider sending this (or something similar- short and sweet) as a Letter to the Editor, to the hometown newspaper of this doctor.
````````````````````````````````````````````````
Dear Editor,
I was recently diagnosed with Lyme disease. In Texas there have been over 1,800 cases reported to the CDC to date. The CDC states for every case reported, approximately 10 are being missed, making our total number of actual cases over 18,000.
Untreated, or improperly treated, Lyme disease can cause serious damage to multiple systems and organs, such as the brain, heart, joints and muscles. To avoid later complications it must be treated adequately with antibiotics as soon as it is suspected.
Unfortunately, many do not know about Lyme disease. Often sick patients are told they can't have it, even when they have positive Lyme tests, "because there is no Lyme in Texas."
This same approach to Lyme disease was taken in the northeastern US approximately 30 years ago. Today, they have an exploding epidemic, hundreds of thousands are sick and people have become chronically ill, disabled and some have died.
I hope Texans learn from the mistakes of the past, and that our residents and health care professionals will educate themselves about this disease before they find out the hard way that there is Lyme disease in Texas.
Sincerely.
`````````````````````````````````````````````````
This is under the typical 200 word limit. It is MUCH nicer than WE want to be... Yes.. I am angry this is still happening there too.
If this doesn't calm your anger....
Write something similar to the Administration of the hospital where this doctor works from (naming her and the date she said it and the fact you have to go out of state now for treatment, but being NICE in the letter)..
And cc the letter (so the hospital can see you did) to your local state legislators and your Congressional reps asking for help.
If you do, let us know of any replies you receive.
Doing this MAY help prevent others from becoming sick.
Thank you!
PS. Here is the contact information for your Texas Congressional reps. Find yours, as all are listed here.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i went to the infec disease center in fort worth. don't waste your time!!!
the doctor was a female who after seeing me said "i didn't think there was anything wrong with you in the first place. and everyone knows nobody has been able to duplicate igenex results, so that tells you they're false."
what a waste....stay away from them...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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THANK GOODNESS! I am SOOOOO relieved to know that there is no lyme in New York! I guess they couldn't swim the Hudson river from New England!
Maybe it's lyme is a neurosis related to being a Red Sox fan. =8-)
What exactly are IFMDs? If they are that ignorant and poorly trained about the basics of lyme, (if nothing else, a very controversial disease), what DO they know about?
I mean at least know the issue even if you don't agree with it.
My Brother was sent to an IF who had just moved from TX to Vermont while he was trying to figure out why he was essentially dying. She knew NOTHING about lyme.
He had to tell her the basics, and he knew only limited info at that point.
What good are they? Could they diagnose syphilis? Or Pinkeye?
How come veterinarians know that there is an epidemic amongst dogs? But MDs don't with people? Do ticks not bite people?
Hmmm, maybe we should see vets instead.
Actually, I wonder if there are stats on canine lyme infection incidence. And if they are different from human incidence. If dogs are getting lyme, so are humans.
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Don't feel alone!!! I've heard that same phrase, "There's no Lyme in Texas" come out of so many doctor's mouths!
Sometimes I just sit there and give them the death stare and remain totally silent. Other times, I start pulling out Lyme info and show it to them, OR I wait until they leave the room........they're assuming I'm going to go check out, but before I go to check out I leave ALL KINDS of literature in the examining room!!!
Sometimes, I get a little cocky and ask them if the ticks (and other carriers) actually STOP AT THE STATE BORDERS?!! I tell them DIDN'T YOU HEAR THAT TICKS (and other carriers) DON'T REQUIRE A PASSPORT, SO THEY CAN TRAVEL TO & FROM OTHER COUNTRIES EASIER?
I tell them to BE CAREFUL THE NEXT TIME THEY'RE DOING YARDWORK, or WALKING IN THE PARK, or WHEN THEY GO ON THEIR NEXT SKI TRIP IN COLORADO TO BE SURE AND TELL THE TICKS TO STAY THERE AND NOT BE ON ANYTHING THEY BRING BACK TO TEXAS........the list goes on and on.
Other times, I've just silently gathered up my things and left without saying a word. OR, I've become defensive and argued with them on HOW could a doctor POSSIBLY even make such a statement?
I've actually educated (or at least opened their minds) about Lyme disease. The only doctors I have put "on my team" actually believe I have Lyme, otherwise it would be pointless to have them participating in my treatment.
I'll quit spewing all over the place right now! I just get so frustrated when I hear of a doctor saying such a dumb thing, but you have to keep in mind that doctors don't want to treat Lyme. They WANT you to go to someone else.
I'm sorry you had to put up with that doctor. Keep looking until you find the right doctor who can help you.........and don't give up!!!
Remember, YOU ARE IN CHARGE OF YOUR OWN HEALTH. YOU HAVE TO BECOME YOUR OWN ADVOCATE. BECOME AS EDUCATED ABOUT LYME AS POSSIBLE AND EDUCATE AS MANY OTHER PEOPLE AS POSSIBLE!!!
Good luck and take care of yourself,
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
This has been a fun post. We have pole-vaulting ticks, death stares at our doctors, were we supposed to wear flea collars, I can't rememer. I am in stitches now.
I like Terri's ideal of putting lyme literature in the waiting room. I think I will plaster it in the elevators and on the doctors doors, what a rip.
Tincup, the letter is perfect. I will definitely send it to the newspapers, not sure about the hospital administrator right now, though. My daughter's friend, who's had lyme most of his life, called the doctor's office and told a gentleman there that they opened themselves up a malpractice suit. This was done w/o my knowing. Now I may be in hot water.
After the dust settles I will post her name and contact information and throw her to the pack.
Posts: 245 | From Texas | Registered: Jul 2009
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You asked for Dr. B's guidelines. Here they are. I didn't see any other posts with this included. If it was, sorry for the duplication. This is basically the lyme bible to those of us who suffer. It is also on the ilads.org website but for some reason I couldn't find it this time.
quote: I think the doctors are so rushed they only look at the critical numbers and let the rest slide.
They dont look at labs AT ALL. They have computer which puts a mark on lab if it has eithr L or H. If there is no flags they dont look.
One time I had lab with numbers out of range, but that MD did not tell me anything about it , so 2 months later when i requested labs and review it. I do notice 2 numbers out of range , marked as H. So I call the office and ask WTF?
-They tell me , well sorry we had a bug in computer system and it was not flagging abnormal labs . - I mean he did not even look at lab report itself, otherwise he would see 2 H marks. let alone look at whole picture as a whole and correlate the numbers
I mean most MDs are completely useless and clueless. All they know is to follow the simple script , if anything is not mentioned in this script they dismiss it or punt to specialist
I gave up on them. I review all labs myself now , after doing research. -Sure it takes time, but I cant rely on ducks and morons.
Posts: 856 | From MA | Registered: Jul 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Here is the ILADS link to Dr B's paper that Eliz was having trouble finding...
I printed lots of info for him including Dr B's guidelines.
Before I handed it to him he said he was going to get some Lyme disease info for me.
He left the room and came back with some general IDSA-type info from some website called Uptodate.com.
I handed him a large pile of credible resources with Dr B's paper on top.
You should have seen his stone-faced look when he realized that the info I provided was so much more scientific and detailed than his stupid article.
I later sent him a letter explaining why my history, symptoms and lyme specific bands on my Igenex western blot indicated a diagnosis of chronic borrelia burgdorferi infection.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
LadyJ,
That's a good idea to get all our test results from the mds.
They might also come in handy when visiting other mds. That is if the results are accurate. I think most are, and we can always research for ourselves
James NY,
I am sorry for your brother's troubles. It is hard to see our loved ones suffer.
Visiting the vet instead of the our docs is a better idea. I actually like our vet more than most mds we have; he has a better bedside manner too.
Good to hear you are now safe in NY. Maybe some of your lyme friends could move up there.
Got room for some of us? Oh, I forgot, we're safe here too. What a relief!
Tincup,
You are so eloquent. Great letter.
Terri,
How funny! Putting the lyme literature in ID's office.
Just be sure they don't contain too many big words and have lots of pictures.
It is inspiring to see that no matter what this awful disease takes from us, we can still have a sense of humor.
God bless you guys for brightening up my morning!
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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