posted
It is amazing how the medical community reacts when you ask a doctor for the name of doctors who are familiar with Lyme disease. I have heard responses from everything as " no such thing" ,to " stay away from these Lyme Doctors they are just guru's that will keep taking your money", to Why fix something that is not broke you do have no Lyme Disease because your test are negative. Yet when you explain you read many times test can be false negative, they scream at you to stay off the Internet. I have lost total respect and faith in the medical community. The ego of a doctor is enough to make me vomit. In my experience no doctor likes to be challenged and expect patients to just accept what they tell them as experts in the medical field. I believe doctors need a wake up call with this disease and admit they do not know enough about it and need to begin thinking out of the box.
Posts: 9 | From Economy PA | Registered: Jan 2009
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I was told to stay off the internet and quit diagnosing myself. I was also told by an ER doctor that Lyme doctors are scammers and take your money. He also said they were dangerous. Well, not seeing an LLMD is dangerous in my book.
I have no faith in the general medical community at all anymore either. It is almost like they are programmed to tell you that you do not have Lyme and are unwilling to hear a word about it.
-------------------- Lyme, Babesia Microti, possible Bart. Posts: 173 | From A little south of sanity - PA | Registered: Jan 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by 14doctorslater: I believe doctors need a wake up call with this disease and admit they do not know enough about it and need to begin thinking out of the box.
That is sure true! Read Pam Weintraub's great book, Cure Unknown, it explains alot of this sad sorry history of willful ignorance.
Posts: 2557 | From home | Registered: Aug 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
two of my kids and my daughterinlaw are being taught that in college and nursing school now. stay away form llmds-they are preying on sick ppl and taking their $
so i worry about my kids not tx their lyme and they worry about me being taken advantage of by the big, bad llmds
way to increase stress all around
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
These doctors take insurance, and so they tell you to stay away from those who dont...
they all studied the same old fashioned text books which need severe revisions.
global warming and other factors are giving births to new infectious diseases and those which have been hidden under the table for the longest time, lyme being one of them.
ever go to a doctor with a headache?, he gives you a pill for the headache, but did he ever dig deep inside you to know whats really causing it...???
a darn shame that this so called modern day medical community is in denials of these diseases which are slowly taking their toll on us all from deep inside us, and eventually it is they that lead to cancers and such.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Its a bit more complicated than that. Many Dr's, once they start down a dx road they will stay on it and never see the traffice on the other roads. It happens to Dr's in all displines. Many Dr's will treat patients for the wrong disease. Misdiagnosis os unfortunately very common.
The problem with Dr's who treat Lyme is thart they are an easily idenitfiabe group. And they are a group who buck the status quo in terms of treatment and often listen to patients who others have written off. The LLMD's and those that deal with things liek relapsing fever need to start joining the infectious disease societies and associations around the world in order to gain some main stream exposure. The way things are going nobody talks about infectious diseases that cannot be cured. After time the "incurable" part of the picture gets erased from history.
Some examples: TB Syphilis Relapsing fever leporosy brucellosis bartonella and of course lyme.
There are many more bacterial infections that fall in this category but alas, they are all *cured* when the patient dies after which the ID will write some BS paper about how it was some new or novel infection that did in the patient.
I have even seen ID's get stuck on the Lyme DX road only later to find out that it was not Lyme. All signs looked like Lyme but if they more experience with other diseases they would likely have seen that it was not even an infectious disease at all.
(A typical example of such a situation is amalydosis, with positive Igg for some past infection to throw you off). CSF will show protein and thus make you think its a CNS infection but it is not. You focus on what you know and tend to discount the rest of the picture even though a hemotologist would spot it in a second.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
14, if you can start to get the answers to all the silly things they say, then we can start to answer them back with the truth. I do, and I bring Lyme brochures as well. We hire them, not the other way around.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I was very lucky. I have a Primary Care Doctor who looked me in the eye over 3 years ago and said,
"I can't help you. I don't want to run any more tests or do anything because I'm not an expert in this. Get on the internet and find one of the famous Lyme doctors and I'll fill out an out of plan referral for you to go there. Find the best Lyme doctor you can find."
This was his response when I brought in Dr. Burrascano's guidelines and asked him to order a list of tests for me.
He always tells us,
"When you are sick, you have every right to keep searching and searching until you find an answer."
We love this man. Not all non LLDs are bad. There are those whose hearts are in the right place.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
This is all a very good point. We should not get stuck on lyme or off lyme. An open mind has to be kept from both directions.
I am quite sure my LLMD believes I have lyme. But we never talk about it. I test positive for current infections of Babesia, Mycoplasmas, EBV, CPN, HHV-6. The H.P. is gone. The lyme only tests positive for past infection.
We treat these guys and she keeps running tests. Periodically she runs the lyme test as well.
After 4 mths of herbal parasite cleanse, on New Year's day I passed something approx 3" long. It is off to the lab for testing.
Point is, there is so much more wrong with me than just lyme. Both the doctor and I fully expect the lyme to appear at some point.
Whenever, I meet with other doctors, I talk about rheumatoid arthritis. Not lyme. It gets way more respect and they are very interested in the way I am treating my RA. It is amazing to me how many doctors outside of the field of rheumatology totally believe infections are behind auto-immune disorders.
No one argues the positive test results and I don't shove the elusive Lyme bug in their faces.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
We've had our fair share of bad experiences with doctors, but I've found that as long as you don't hyperfocus on Lyme disease, long term abx, how great LLMDs are, etc... and you remain open to the other doctors ideas and suggestions, you will not run into as much controversy.
Posts: 371 | From CT | Registered: Jun 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've had the same issues with my family doctor. She doesn't even want to hear Lyme disease now that tests have "proven" I don't have it.
I even brought a Lyme brochure for her to look at and she flat out refused to even take it because she knows all about LD.
Yeah, okay. Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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ByronSBell 2007
Unregistered
posted
If you owned a car lot, with cars that ran on gas, and another car lot moved in across the street with new electric cars.... would you like it?
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posted
We've been dealing with Lyme & co-infections for 10+ years. I found our 1st and current LLMD here.
My PCP doctor took 6 months off. I went to another doctor at the clinic. When I took him I have Lyme disease, he told me about 2 LLMDs in MN. The next day I went to the chiro for an adjustment. One of the office people found out I have Lyme and she told me about one of the MN LLMDs.
This was a 1st in the 10+ years. Too bad I didn't meet this doctor 10 years old.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think you have to be careful with all doctors, LLMDs or not...
LLMDs may be helpful but they do not know everything. People with Lyme (especially long term Lyme) respond differently to standard treatments - whatever they may be.
I've heard of LLMDs charging outrageous fees & people seeing them still do not find a cure. Some of them are egotistical & charge exorbitant fees to get rich & protect themselves from legal suits.
I'm sure there are very excellent doctors out there trying to really help people. You do have to be careful of both regular doctors & ones who call themselves LLMDs.
I do not know why Lyme Disease is such a threatening topic. I don't see why it elicits such a bizarre response from the medical profession or why it's different than treating diabetes, cancer, heart disease...
It just makes it difficult for us with Lyme - sorry to say. It's just the nature of this awful illness.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
unfortunately i went through a slew of doctors before finding out about lyme. then i went to a real piece of work. oh he was lyme literate but he had a lot of problems.
my pcp doesn't believe in lyme so it makes it hard.
you almost have to go to a llmd who has lyme in their family. otherwise they just don't get it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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