PLEASE FOLKS, don't go see an Infectious Disease doctor.

You will feel humiliated and demoralized. They follow IDSA guidelines, and the IDSA has fostered huge controversy regarding Lyme because of its non-compliance with treating and researching Lyme appropriately.

I have seen a number of posts from people trying to see ID doctors lately.

The only one worth seeing is Dr. J. in DC, but that's because he is an LLMD.

Lyme is so hard to deal with, and to treat, that the last thing you need is an extremely dismissive attitude. It will be the beginning of an already difficult journey.

The further South you go, the less likely you are to find a supportive doctor period, regarding Lyme.

Even the ID doctors in the North are bad, despite the CT attorney general's attempt to sue the IDSA.

At least some of the large university medical centers in the North research Lyme, although their ID departments disagree. Columbia U. Medical Center is a case in point. It has a Lyme D. research facility, but its ID doctors are in complete disagreement w. that facility.

In the South, they do not. Duke University and UNC-Chapel Hill (especially Duke) are really bad in their attitudes regarding Lyme Disease.

Your best approach is to see an LLMD.

Margaret

I don't agree 100%, maybe 90% as I saw an average of 5 different doctors a year over a 5 year span (that makes over 50 doctors) to try to find out what was wrong with me when I became sick with lyme (didn't know it was lyme) and none of them had a clue except for an ID doctor who sent my blood to IgeneX (I had never heard of them before) and when my tests came back CDC positive, the ID doctor prescribed long term Doxy for me (didn't help me but I didn't know much back then).

I know of another person who saw a Lyme Literate ID doctor in Minnesota who prescribed long term abx. There are exceptions to everything in life including doctors.

I also wouldn't use one's energy hating ID doctors, use that energy to educate yourself about this disease by reading books, watching video's by reputable doctors, etc.

Denise

I agree. I went to two ID's and both ended up telling me I needed to see a shrink.

I went to see an infectious diseases doctor - within 20 seconds of meeting me, without even examining me or drawing blood, she referred to my Lyme disease in the past tense, that told me all I needed to know.

Just thought I'd add that I asked her to test me for bart but she refused because I don't have a cat. Define moronic.

Post Edited (lymelymie) : 6/10/2014 2:14:25 PM (GMT-6)

Deejavu,

When someone is beaten down, chewed up and raw inside their hearts and their bodies are slowly dying, without any help or care or concern for their wellbeing by those in jobs too CARE, yes, going into a situation like this and being subjected to someone who is in an authoritative position, supposedly educated and experienced in their field, well getting more crap piled on from them with their condescending words and attitudes, well this will surely cause the one suffering to feel abused and HUMILIATED.

Someone who is strong and healthy can stand strong against the abuse, the derogatory attitudes and words, and the humility thrown in their face, but NOT WHEN ONE IS SO ILL AND SUFFERING THEY HAVE NOTHING LEFT TO STAND STRONG.

So, in my opinion, others do have the capacity to do real harm, whether in words, attitudes and/or actions that lack concern and care. We go to Dr's, entrusting our care to them, only to get abused. It happens all too often, especially when dealing with L/co.

I'm happy you are well enough to stay strong in the face of abuse, but many of us aren't. We suffer all too often at the hands of people who suck at their jobs, and we don't, well I don't need anyone telling me others can't humiliate me, unless I allow it. Well, that statement isn't helping all those suffering because it's only heaping more crap on top of the suffering already experienced, helping to add to the pain and feelings of hopelessness, and accusing us that our feelings aren't valid. Every feeling is valid, and life isn’t as black and white as you suggest.

I'm saying all of this so others who are subjected to the horror and abuse by all these lousy, uneducated and egomanical dr's, to not feel that much worse about themselves because they feel humiliated by these awful experiences. To me, it's like saying if someone hits me on the head with a baseball bat, it's up to me whether I feel the pain, or bleed, or die. Pain is pain, and when someone throws us under the bus, well, we sure will feel it.

Also, 5 dr's in five yrs is only 25, not 50.

Girlie,

I know what you're saying, these infectious diseases doctors have a way of making Lyme sufferers feel weak and demoralized. Are they abusive? I'm not sure, but one word that does describe them well is 'negligent.'

If you're constantly hammered with dismissive attitudes, either from the people around you, or from doctors, it's hard not to feel demoralized, especially when you have to deal with a debilitating illness, and people think you're full of crap.

And yeah, menopause. As if menopause is as bad as Lyme and its coinfections?

Let's call it something different: MENoPAUSE, or a pause between men, ha ha! :)

Margaret

Hi In_A_Cocoon,

I was beaten up and so very ill. When the doctors I saw over 5 years (you are right, I made a mistake, it was at least 10 doctors I saw a year), I walked out (hobbled out) on several doctors because they tried to make me feel worse then I already was feeling. But that's me. I couldn't walk, was using crutches but I was not going to take any crap from any doctor because they had a degree.

I'll tell you a story: When I was a very young girl I went to a dentist around the corner from where I lived and the dentist charged my Mother for 4 cavities when I knew he only worked on one. Ever since then I was suspicious of doctors which carried on into my adult life. I always asked questions and if a doctor became defensive, then I didn't want to see them anymore.

Another story is when a car hit me in my legs when I was 17 while crossing a street and I was supposed to die that night. I was out of the hospital 1 week later and the doctors called me a miracle case. Yes, I had over 10 operations afterward due to all the damage that was done. One doctor who was working on my broken jaw (I was wired up for 6 weeks) was horrible to me and I found out years later he lost his medical license due to his horrible bedside manner.

I have so many stories but that's enough for now. I guess my experience as a young adult affected my outlook as an older adult.

I don't know where my fight comes from, but it's there. I don't question it and call it a gift.

Again, we hire a doctor to help us and if they are not doing their job I just can't see paying them and/or continuing seeing them. I would rather get information from a reputable book (again, as a young girl I rode my bike to the library where I would read reference books) and when the internet was invented I used that. I was always very curious!

I remember even yelling at some doctors because they gave me the run-around. One doctor at a famous hospital in Long Island (I remember waiting 3 months for that app't) refused to test me for lyme and ehrlichiosis and said if I had ehrlichia I would be dead. As sick as I was I called up his supervisor and told him what this doctor said to me. This was after I did my research and I knew I had lyme but needed medical proof.

I guess everyone responds differently. I was paying these doctors and I was not going to pay them to tell me bull. That experience alone of going from doctor to doctor was a real learning experience for me. I thought to myself "what did they learn in medical school?"

When I finally got by test results back from IgeneX I made copies and sent them to the majority of doctors I had seen over that 5 year period because of my anger. Looking back, it was good therapy for me to do that.

And I had no support from anyone. Not my family, not my ex-husband, no one. I drove myself to all those appt's when I could barely walk and I remember getting really lost going to many of these doctors. It was a very dark time in my life and again, I was very angry that none of these doctors could diagnose me. So finding a nurse who did the dark field microscopy where she discovered spirochetes and going to an ID doctor was a blessing for me. I know that ID doctors are the exception to the rule but that's how it worked out for me.

Denise

Probably not, bc I'm pretty sure you wouldn't get anywhere if it's a Lyme case.

The dentist, maybe. Or the doc. with the terrible bedside manner?

Deeja, I think I've learned a lesson from you: Walk out, or don't pay.

I've already made inroads, because I'm refusing to pay for an ultrasound that was supposed to dx a hernia, and the technician didn't even pass her wand over the hernia. When I called her attention to it, she said, "Ultrasounds aren't used to diagnose hernias."

Later, the nurse at the doctor's office called me, and said, "No hernias!"

Two doctors later confirmed that I had a hernia.

We'll see what happens!!

Margaret

Thanks, Deeja.

No, I'm not going to pay, regardless.

M