-------------------- "I may not be able to change the way the wind blows but I can adjust my sails"
"When we don't try something for fear of looking bad, we already look bad to ourselves." Posts: 7 | From Missouri | Registered: Apr 2006
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I think it is very admirable that you want to learn more about this illness since you will be working with patients who have tick-borne illnesses.
You have asked a loaded question.
There are several different answers depending on your point of view.
The answer I will give you is to read the Newbie Links (at the top of the medical forum) -- look for the link to Camp A and Camp B.
Basically you have the (IDSA)Infectious Disease Society of America who believes that Lyme is easy to diagnose and treat and if you do not get well quickly you do not have Lyme anymore, but you have an autoimmune disease instead.
Then you have the (ILADS) International Lyme and Associated Disease Society who believe in a clinical diagnosis and think the tests leave a lot to be desired and they say treat with
longterm antibiotics until symptom free. They also believe in coinfections and don't limit treatment to just Lyme disease.
Like I said, that is just one answer to your question.
The reality is not so clearcut.
In my opinion, half the problem is in docs who simply do not know what the symptoms of Lyme disease are -- for example, hubby has seen over 60 docs in the last 5 years.
This includes 14 neurologists -- 13 had no idea that tremors/myoclonus/seizure-like episodes could be caused by Lyme. Several of them ignored a positive PCR test because it was from the "wrong lab".
The 14th neuro was an LLMD (Lyme Literate Medical Doctor) who knew the symptoms of Lyme and other tick-borne illnesses and he still missed the Babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
welcome bluejeans to the board,
As a newbie, I'm going to ask a favor of you ok. Please edit/pencil icon your topic line to read, "why do docs refuse to test/treat lymies?"
Now everyone knows what this post is about. On a normal, busy day; we fill up 3-4 FULL SCREENS full of new/replies to posts! Majority have certain amount of LIMITED time here, so the more specific you are, they may chose to read yours...
The more specific your post is; the more responses you will get, but it helps us when we do a SEARCH for those subjects we need info on.
"I started working for a doc who treats borreliosis. WHY do other docs refuse to test, treat patients"
--- IGNORANCE OF LYME DISEASE!
I'm NON-medical, so here is my perspective as a misdx lymie of 34 years and a lyme treated patient of 20 months.
First, they do NOT BELIEVE there is such a thing called CHRONIC LYME disease. They know of early lyme if caught early and treated 4-8 weeks with abx, that patient CAN BE CURED.
Those teaching MDs about lyme chose to tell them about early-tick bites only; NOT CHRONIC LYME FOR YEARS which I'm darn disgusted about.
I saw between 40-50 MDs/spec. before I got a correct dx, and that's because I pursued it over & over to be tested for western blot igm/iggg thru IGENEX.
I was showing all the signs of early-onset Alzheimer's disease; my sister-in-law died of AD at age 40 afte 8-14 yrs. of this mind-robbing disease. I know the sx only too well.
As of Thursday, learned I have food SENSITIVITIES/allergies including: mold, mercury, magnesium, a whole new diet for GLUTEN FREE, etc. They took 18-20 vials of blood; I'll find out the results in 2-4 weeks.
Another MAIN reason MDs don't take us: we take TOO MUCH time in ALL the pain/aches and meds we need. We're hard to dx correctly since lyme mimics 300 other illnesses.
We're just getting warmed up in 10 minutes, and that's the amount of time regular MDs give us.
When I saw my 1st "beginner" LLMD, he spent 40-50 minutes with me, and didn't head for the door once! Unbelievable.
Next visit was 20 minutes and ran that length of time I saw him.
We need tremendous ACCURATE AND DETAILED medical notes especially when we are trying to be approved for SSDI, ss disability insurance.
These are a few of the reasons in my lyme mind. Hope it has helped you.
What state are you in? We are always looking for another LLMD for the many of us undx or needing a new LLMD. State only, NO CITY NAMES.
Thanks. Also, if you chance "my profile" to that state, more folks will contact you when they notice what state you're in.
My new LLMD took 3 solid hours to give me a thorough exam plus 16 questions/answer survey given to her prior to my entering room. Nothing was missed ... extremely thorough.
Now, I don't mind paying for a THOROUGH exam, etc. paying a lot of NO advise and pass the buck system!
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
.........and if you want a basic simple answer. They didn't learn it in medical school.
Also insurance dicates treatment...... so it depends on which insurance your dr takes.
I go to a Lyme Literate medical doctor who takes cash. He treats the lyme aggresively and doesn't answer to the insurance industry.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Ok Betty, I changed the subject line, hope that helps. I'm in Missouri Thank you all for the info.
-------------------- "I may not be able to change the way the wind blows but I can adjust my sails"
"When we don't try something for fear of looking bad, we already look bad to ourselves." Posts: 7 | From Missouri | Registered: Apr 2006
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posted
With all that documentation, what's the big deal?
I worked in neurology for 3 years and watched patients who had normal MRI Brain scans and normal lumbar punctures get a diagnosis of MS. WHY? Because their symptoms were similar to that of MS. I'm finding that those symptoms are so very similar to Borreliosis.
WHY wouldn't the neurologist test (or have their PCP test) for Lyme's disease instead of putting them on injectable medications, some daily for the rest of their lives? It just doesn't make sense to me. (I don't expect anyone to be able to answer tha, just venting.)
I know of one patient (a PhD) who finally went to her neurologist and said "GO AHEAD label me with MS", that way at least she could get further faster with her disability. Very sad
-------------------- "I may not be able to change the way the wind blows but I can adjust my sails"
"When we don't try something for fear of looking bad, we already look bad to ourselves." Posts: 7 | From Missouri | Registered: Apr 2006
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Social Security does not recognize Lyme disease as a disabling illness -- it is not one of their "listed diseases".
In order to qualify for SSDI most Lyme patients end up using their former misdiagnoses of MS, CFS etc to justify their disability status.
Hubby had no official neurological diagnosis except for anxiety/depression -- his MRI did have multiple lesions, but neurologists never labeled him with MS and they all said no
Parkinson's (tremor was too fast etc etc) and he doesn't have "real seizures" because although EEGs are abnormal there are no seizure spikes.
Anyway, we were stubborn and persistent and hubby did finally win the case on appeal and the judge had to list the cause of his disability as follows
(quoting from findings of fact and conclusions of law from Notice of decision)
"The medical evidence establishes the claimant has "severe" impairments consisting of Lyme disease, Babesia, Bartonella and Borna virus disease......"
We felt we had struck a blow for justice when we saw the decision in writing.
MS is a socially acceptable disease whereas Lyme is not.
That is my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Blue Jeans, thanks for the responses.
Also, please check the SEEKING A DR. section for anyone who might be near your LLMD.
Please send them a PM, private message, that goes only to you/recipient & NOT SEEN by us here on the board, and let them know about your LLMD.
We have a terrible time finding them since there are so many of us misdiagnosed; I was for 34 years.
Lookng forward to your participation in discussions here.
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posted
Because they (their wife, kids or parents) were not bitten.
Ask any LLMD. Most of them experienced it first hand and decided to do something about it.
Most controversial diseases in their time were given the same cold shoulder, until...
I'm sure that 20 years from now, things will be different because most doctors will have contracted it, one way or another.
Till then, our LLMD are pioneers; and we are willing guinea pigs.
I don't know about you guys, but personally, I expect a medal - 20 years from now - in recognition of services to science and greater good to the community Posts: 159 | From CT, USA | Registered: Jan 2005
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quote:Originally posted by christelleny: I don't know about you guys, but personally, I expect a medal - 20 years from now - in recognition of services to science and greater good to the community [/QB]
Sounds good to me!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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