As a 3rd major cause of death, I do think that this topic concerns DIRECTLY our health.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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What has been your experience?
1) Inaccurate diagnosis:
2) Inaccurate or improper treatment:
3) Improper supervision:
4) Inaccurate or wrong explanations:
5) add an item if you wish...
Posts: 6199 | From Brussels | Registered: Oct 2007
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map1131
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The medical establishment is failing it's patients.
Not just in the Lyme community but in so many other areas.
These white coats that learned something or nothing in a book 20-40 years ago are so out of touch with the health issues of patients today.
It is a CRIME!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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My own experience:
1) Inaccurate diagnosis: - Lyme not diagnosed - 'you are not ill, go home' (at least 5 MDs in 3 different countries, Belgium, Switzerland and Germany)
- Babesiosis not diagnosed - 'your air hunger is caused by a cold'. (lyme specialist from Zurich)
2) Inaccurate or improper treatment: - Catarrh medicine for babesiosis air hunger: it worked 0%. (lyme specialist from Zurich)
- Treatment for my symptoms: they suggested a psychiatric doctor. (a couple of MDs)
- Hormone imbalance from lyme: they suggested antibaby pill called Yasmin(gynecologist).
3) Improper supervision: - lyme specialist from Zurich: 'You are not ill, come back in a year'. I could barely walk, breathe, remember where I was, full of joint pains, heart symptoms, losing weight, digestive symptoms.
4) Inaccurate or wrong explanations: - Lyme specialist: 'Babesiosis is extremely rare - it's impossible to get babesiosis if you have a spleen. Read my book to understand why.'
5) An MD from Antwerp, Tropical Institute:
'You can't have all these symptoms, it's not possible'
6)The worst advice, left me mouth open:
'If you continue taking these dangerous herbs (Buhner's herbs, Cowden, chlorella) no doctor will treat you anymore. Stop self treatment now!!'
When he got my exams, he told me I was not ill, that I probably needed a psychiatric dr and left me without ANY treatment.
Only his valuable advice: 'Stop self treatment!'
No wonder medical error kills... Posts: 6199 | From Brussels | Registered: Oct 2007
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Bartenderbonnie
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I would say the number 1 medical catastrophe for Lyme patients is outdated flawed testing.
My experience. . . Out of 19 Medical Practioners, 5 were knowledgable enough to recognize I had every clinal symptom of neurological Lyme disease. They promptly ordered the standard western blot for Lyme and I suddenly didn't have Lyme anymore. Sent home to die.
Second on my list is inaccurate medical records. I urge everyone to request a copy of any test result, procedure, or summary of any medical appointment.
I've had abnormal blood tests yet told they were fine. I ve had abnormal urine cultures yet told they were normal. I've had abnormal MRI's and the doctor's office never bothered to call me, follow-up with treatment.
My ER visit stated I was diabetic, I am not. My Cat scan stated I had fibroid tumor on uterus. I have NO uterus. Dates of services or illness are frequently wrong.
I usually go in person to request a copy. Office staff will usually tell you to call ahead next time. But if you call ahead, they will usually tell you that they are not allowed to give you a copy.
YOU MUST BECOME YOUR OWN HEALTH ADVOCATE IF YOU WANT TO GET WELL. ❤️
P.S. Almost all of my Doctor's notes state that I present very well developed. I can't explain that one ?
Posts: 2977 | From Florida | Registered: Nov 2016
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I got the mis/underdiagnosis with Lyme and numerous negative experiences like above, but most of my observations are as an advocate for family.
It's truly heart wrenching what I have seen that constitutes "medical care" here in the US. It frightens me if I were to be so ill that I would have no choice but to depend on someone other than myself.
As an advocate for someone with a long history of complicated health issues, many problems arose from doctors and nurses deliberately disregarding what family says. So many avoidable mistakes.
There's been so, so much happen. All horrific, definitely criminal, heart breaking mistakes that never needed to be. Just unbelievable if I were to go into detail. Also probably a completely missed Lyme dx, despite begging for WB tests to be done.
As far as my Lyme tx goes I have no complaints now. I work with a provider who treats my Lyme appropriately and works with me as a team. Provider listens, trusts, guides, and redirects me when needed with years of expertise. I couldn't ask for more.
I was very sick by the time I sought my Lyme dx. I did not seek help for symptoms when I should have, which probably saved me from bad experiences with doctors and missed dx's.
After realizing Lyme I then went through rounds of specialists ruling out problems directly withing my heart, GI tract, etc. This is backwards, compared to most who visit a plethora of specialists before discovering Lyme.
I've had a few surgeries, and thankfully no regrets.
For our own health, I believe first and foremost we have to be our own advocates. Be as selective as possible when it comes to providers, especially surgeons.
Learn everything you can about your conditions and what is happening in your body. The best specialists and surgeons I've had were appreciative of my knowledge of myself, because it makes their job easier with a higher likelihood of positive outcomes.
Ask all questions, than ask more. If you are fortunate to have someone able and willing, allow a health advocate to work with you and on your behalf.
Ultimately, we are in charge of our own health. We need to know what we should be eating, and how everything we do affects us. There are no rules that apply to any one individual, and even the best doctors can only lead us as a guide (barring major surgical interventions).
Please, never eschew seeing a doctor for diagnosis and treatment. But always learn what you can do that will help first and try to give what the body needs to repair and normalize, if possible.
Posts: 474 | From US | Registered: May 2014
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Improper supervision: I feel like I came very close to becoming a statistic.
I went to a LLMD with all the latest technology in their office etc., and they still told me to stop treatment and see a psychiatrist. Granted, the treatment I was on wasn't working, but I didn't know that at the time, and was never given any reason that it wasn't working. I was to much in a fog to figure it out for myself.
That just sent me down the wrong trail completely. I ended up switching to a another doctor who wasn't an LLMD, and it didn't work out well at all.
As to improper treatment, if I had just had a month or two of doxy, it all could have been avoided, but who knows.
I now have a doctor who says things that make sense (or I have gotten clearer in the brain to understand), so I am doing a lot better now.
I agree: don't avoid seeing a doctor.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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Brussels
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When I was very sick, I did not avoid seeing doctors.
They kept firing me, saying I was not ill...
Today, I see that as a positive outcome.
Not in the past, during those awful months of suffering and realizing no one would help.
Today, I think I'm glad they had dumped me, because ---- what treatment could they have offered anyway, if they don't even recognize diseases?
Fortunately, there are some good professionals that may help. I found them later.
But usually, they are very far from conventional medical practice, many are fully booked or have a long waiting list, many act low profile so they are harder to find... --------------------------
Posts: 6199 | From Brussels | Registered: Oct 2007
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'Go see a doctor' even if medical error is the 3rd death cause in the US?
It's funny how we keep repeating pre-programmed answers, without thinking much about what we are talking.
I'd rather say: 'Go see a doctor, KNOWING that medical error is the 3rd death cause in the US'.
Which means: 'Whatever he says, don't take it for granted', but make your own opinion about it.
'If they want to do something on you -- an exam, a treatment, a surgery, give you a drug --- you'd rather research about it BEFORE you start'.
And decide for yourself, after knowing your risks.
The risk of mistakes is very high.
Going to a doctor and following medical advice /treatments can kill.
And the chances that that happens are VERY high!
That is what it the statistics mean.
It takes a while to change a programmed brain, that is trained to believe in white aprons, or that is trained to repeat commands / ready-made sentences without thinking about them.
The truth is: 'seeing a doctor is a life-threatening affair'.
Medical care may save you, but it may kill you too.
It's just what statistics tell.
How many have died because MDs refused to treat them?
These people don't even go on 'medical error' statistics, even though they also died from medical error.
How many do not suicide, for lack of proper treatment??
Lyme sufferers know about that, it's a screaming reality.
Our suicides won't go under medical error statistics either, even if it is DUE to a blatant medical error !!
Vaccine damage? Not a medical error, because they do not recognize cause and effect.
Baby died after a vaccine? A coincidence. It doesn't go under 'medical error' either.
Posts: 6199 | From Brussels | Registered: Oct 2007
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