posted
I got sick and was bitten in summer of 2010. I immediately went to dr's office and had lyme test and both came back positive for lyme. I was sent to multiple specialists who said the tests were unreliable and to take antidepressants. Now over a year later I've gotten sicker and sicker and can't hardly walk, twitch, and am sick 24/7. I finally went to an LLMD a month ago who has me on doxy/metro. She said if they had correctly treated me, this wouldn't have happened and I may have this for life. My question is besides suing, what are you're opinions on my best course of actions that can make these doctors aware of what they did,or didn't do to me and others. So far, this disease has destroyed my life. Up to this point I was a web developer and online marketer. I'm wondering if anyone here has any ideas of what I can do online maybe youtube vid's or websites to constructively make people aware and these dr's more aware of this chronic infection and not to just blow people off when they have symtoms and + tests. So maybe in the future this won't happen to others. Thanks so much for listening. Posts: 147 | From youngstown | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- (Breaking up your post so more can read it)
I immediately went to dr's office and had lyme test and both came back positive for lyme. I was sent to multiple specialists who said the tests were unreliable and to take antidepressants.
Now over a year later I've gotten sicker and sicker and can't hardly walk, twitch, and am sick 24/7.
I finally went to an LLMD a month ago who has me on doxy/metro. She said if they had correctly treated me, this wouldn't have happened and I may have this for life.
My question is besides suing, what are you're opinions on my best course of actions that can make these doctors aware of what they did,or didn't do to me and others.
So far, this disease has destroyed my life. Up to this point I was a web developer and online marketer.
I'm wondering if anyone here has any ideas of what I can do online maybe youtube vid's or websites to constructively make people aware and these dr's more aware of this chronic infection and not to just blow people off when they have symtoms and + tests.
So maybe in the future this won't happen to others.
Thanks so much for listening.
(outerspace1226 - from Cleveland, Pittsburgh) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Nothing right now. Focus on getting better. That's a full time job, and more.
The politics in the U.S. support the doctors who failed you. When you get better, then you can become an advocate for your local support group, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
if you have documented 2 positive lyme test and they didnt give you anything but anti-depressant, i would say go to a lawyer and see wht you got. prob with most of us - we were treated with not enough but Dr' s are covered through IDSA.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- Any legal action against previous doctors will now put the current LLMD at risk. There would be no way to keep the name of the treating doctor private. You can't afford to loose your LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Oh no I am not going to sue...Even a million dollars won't help me I'd be too sick to spend it. I just want something to do while herxing/healing.
Posts: 184 | From taking pills | Registered: Oct 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
suing would be the last thing on my mind. bad enough no support but then for the whole world to call you a hypochrondriac or worse is not worth it.
just move on. and spending valuable healing time on facebook, etc., is for me, not worth it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- If you want to take some sort of non-legal action now, I suggest contacting the founders / leaders of both the Cleveland and the Ohio lyme support groups for their advice.
They know the political atmosphere and the state medical board leaders' attitude. They also may have knowledge of the doctor who failed lyme dx. All this information is essential before making any further decisions.
And you may find someone with energy to be an advocate for you in this matter, while keeping your current LLMD safe.
Before you do anything, get a copy of your medical file. Any kind of letter to him and your file could get some red flags that will follow you. Just be sure you have copies of any past tests you may need first.
Also realize that even a letter of dismay can cause your file to be red-flagged as a trouble maker or a "difficult patient" (code for hypochondriac, malingerer or worse).
This could affect how other regular doctors and specialists will treat you for years to come. It's a very real consideration.
It's impossible to sign on with any new doctor and not have them see past notes from previous doctors, even if you try to skirt the issue by taking your own copies of relevant past routine tests.
Your INSURANCE company may also be privy to any letter of dismay you send that doctor, especially if about lyme.
Insurance companies often pay doctors to NOT diagnose lyme. And some doctors may even "report" patients who make trouble. So, if your insurance is paying anything for lyme (or other tick-borne infection) treatment or Rx, this is to be considered. It's best to fly under the radar.
The advice from lyme advocates should help you step safely through what can be a mine field.
In addition to being sure the leaders of all area support groups have this doctors name, I would also be sure the leaders of the CFS (chronic fatigue syndrome) support groups have his name, too. And the support groups for Fibromyalgia, too.
There may be some in those groups who are looking beyond the umbrella diagnoses and they would do best avoiding him were they to consider assessment for lyme. -
[ 11-21-2011, 04:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You should also know that hospitals and some larger medical systems have what they call "patient advocates" or an "ombudsman" - you can see your files and make notes in response that go into your file, but nothing is ever erased.
For some matters, an internal patient advocate can help resolve disputes or document errors and make changes to the system so that those errors don't happen again.
For lyme, though, that will be when pigs fly. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You asked about what you could do by posting about your experience on the web / YouTube.
Slander and Libel laws would prevent you from making public that doctor's name or in any way pointing a direct finger. (Even though we know your doctor did wrong, as long as the IDSA supports such errors, he has the IDSA for protection.)
Now, that does not mean you can't do another GENERIC one but it can be a lot of work that might best be spent on learning all you can for your protocol and doing what you need to make that work.
There are already hundreds of postings on sites and on YouTube from others who had the same experience as you. Sad, but true.
If you want to help those you know, you might send them a few educational links.
I'm too tired now to find all the links for you but here's a start:
(but NOT the Lyme Disease Foundation. The LDF does not believe in chronic lyme and are IDSA minded, the medical group that discounts the complexity of lyme and generally also ignores the full range of coinfections)
Book: Cure Unknown by Pamela Weintraub - this will grab your attention, talk about lots of inadequate doctors and a few excellent ones.
The author has been doing very well for a while now, so don't let the title dissuade you. There is hope for a good life. Many have seen strong remissions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler. I appreciate it very much. I am not logging a complaint with the hospital in which this specific doctor works. I'm not that naive to think that would change things. But a Youtube video with her name and a correct title and tagwords isn't a bad idea. I absolutely could bring her name to the top of google's search results within a couple weeks. She was an infectious disease Dr. who I trusted and assured me to not pursue Lyme as a cause for my illness. I cannot help but be somewhat bitter and if these dr's aren't held accountable this is going to happen more and more especially since this is an emerging disease. As far as slander, there isn't any. I have clear dates/documents/facts needed to back up what I am saying. I have watched the first 20 mins. of that movie and I am ill already. This is going to be an uphill battle that I have to fight while I am not feeling well to say the least.
Posts: 147 | From youngstown | Registered: Oct 2011
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Keebler
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posted
- outerspace 1226 - gotta break this up to read it (many here can read only short paragraphs - otherwise, it's a swirl of grey). ---------------
you wrote:
Thanks Keebler. I appreciate it very much. I am not logging a complaint with the hospital in which this specific doctor works.
I'm not that naive to think that would change things. But a Youtube video with her name and a correct title and tagwords isn't a bad idea.
I absolutely could bring her name to the top of google's search results within a couple weeks.
She was an infectious disease Dr. who I trusted and assured me to not pursue Lyme as a cause for my illness.
I cannot help but be somewhat bitter and if these dr's aren't held accountable this is going to happen more and more especially since this is an emerging disease.
As far as slander, there isn't any. I have clear dates/documents/facts needed to back up what I am saying.
I have watched the first 20 mins. of that movie and I am ill already. This is going to be an uphill battle that I have to fight while I am not feeling well to say the least.
(outerspace1226) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Hey,
I can totally understand any bitter reaction from doctors who are not just ignorant but deliberately obstructive regarding lyme. Totally.
Many of use have had the same thing happen. It still cuts me in half to recall some encounters. This is a terrible situation.
Good point about truth being the best defense about alleged libel or slander. Also, if you had CDC positives, that can help.
But the problem is that even the IDSA does not readily accept even CDC positive tests (can't tell you how often I've heard "false positive"). And, even if they did, they think a few days' of one single drug does the trick.
So, in the eyes of the medical world (and most journalists - but not all - who cover this issue), they stick with the IDSA MD.
I can't express what I'd like to say but, if you connect with the support groups, there may be some ways to voice . . . (words are just all gone) . . .
Good luck and take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am sorry you are going through this....stay around here - at least you have people who understand.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
You also need to be careful if you choose to tackle this. You will be considered a "problem patient" and if you plan to get further treatment for any thing else medical, it will come back to bite you. You will have a hard time getting any doctor to take you on. So, unless you have multiple options for healthcare in your immediate area, stay low key.
Trust me, we have been there!
Just focus your energy on healing. Bitterness and anger do not serve you well in the healing process.
Good luck.
Posts: 252 | From USA | Registered: Sep 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
We've had several members here who were activists and published the information they found.
They were thoroughly slammed by powers stronger than us.
Look up Kathleen Dickson or Elena Cook.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Space, Unless you can prove malicious intent (such as purposely gave you steroids knowing you had Lyme) or gross negligence (like amputating the wrong leg for example), the odds are against you. The courts are sympathetic to the doctors, period. Once they start pulling in IDSA "experts" and insurance company resources, that will pretty much seal the deal against you.
Unfortunately, someone had to graduate at the bottom of their med school class. Suing for laziness or stupidity will not hold water in the judicial system against doctors.
I am not trying to be a wet rag but this is unfortunately the world we live.
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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posted
Father, Yes, I know. I don't have the health, resources, or energy to pursue a lawsuit.
I was just thinking like there has to a BBB for doctor's.
Eventually there WILL be some type of class action lawsuit against insurance companies. Either it's becoming an epidemic or it's just popping up all over my area.
My LLMD said her lyme patients have doubled every year. Maybe it's just Ohio. IDK
Posts: 147 | From youngstown | Registered: Oct 2011
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
outerspace: I commend you for wanting to speak out and reveal. You're very brave. Bravo. I'm certainly not going to talk you out of it. You cannot slander someone unless you speak FALSE statements that harm them. I know a couple of folks who have gone public on Youtube.
It made them feel better about it to vent. It's their choice to publish, or not to publish, post or not to post. But there is always a chance of retaliation, too. Believe me, I know.
It is appalling how someone in the medical field can be in denial and still be considered reliable. Ug.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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