Need to vent, RE: NON LLMD!!

Need a safe place to vent. . . .  Probably many of you have had this experience, for me, it was a first. . ..  

My daughter was dx with Lyme in March of this year through Igenix and clinical symptoms by a LLMD.  Her pediatrician refused to test for Lyme, though he tested for all other autoimmune disorders.  He referred us to an infectious disease doctor, and we decided not to go that route.  Esp disgusted with him, because he would not even test her.  Hence began our journey into the political nature of this illness.

We have been going to a LLMD in Missouri, a very highly recommended doctor.  In the meantime, we have seen many other doctors for her various symptoms and ER visits.  All have been polite about the Lyme, not outright disagreeing, but most rather dismissive of the diagnosis.  Today however, all that changed and we had the worst experience ever with a doctor. 

My daughter has been experiencing shortness of breath, waking up at night gasping for air and complaining of difficulty breathing.  Our LLMD recommended that she be evaluated for asthma.  So, the doctor basically bashed us for not going to an infectious disease doctor, actually left the room and looked up our LLMD, asked why in the world would we take her to a "non-specialist", and asked if our LLMD took insurance, what we paid for our visit, etc.  Of course, I did not tell him----but GEEZ!!!!  wow, I was not prepared for that!!!!

So here is my question--what DO you say when a medical professional asks you point blank why you do not choose to see an infectious disease doctor??!!  I mean, I know that they do not recognize chronic Lyme--is that an acceptable answer??  What do you say when questioned about your LLMD???  I happen to think he is a very good doctor and this guy pretty much just bashed him.....

I guess I just was not prepared with suitable comebacks!!!  Grrrrrrr. . .  Spittin mad here!!!!!

Any suggestions??!!!!

One thing that can help is to not refer to it as "chronic" Lyme. If you call it "late stage" or "late disseminated" Lyme doctors respond better. The "chronic" label seems to really get some peoples back up.

While I think that doctor crossed a line in questioning you in that fashion, next time it happens you could clearly and confidently tell them that your child has Late stage lyme and your research showed that Infectious Disease Doctors are not successfully treating that disease. You wanted to see recovery in your daughter not be told that she just had to live with her symptoms because they are obviously not tolerable (at this, turn and point to small, gasping person on the gurney!)

Stay strong! You are doing the best for your daughter!

I've haven't gone to many doctors so far, but the ones I have been to have been pretty bad.

I went in to a doctor who I had seen several times. I was not feeling well at all, extremely dizzy, seeing spots, nearly fainting etc. He sent me to a rheumatologist who told me to do "nothing" about the pain in my joints and all the numerous other symptoms.

The rheumatologist looked at my blood work and came into the room for less than 5 minutes. I had to change into a gown so he could glance at my knees and tell me they weren't swollen and there isn't anything wrong with me.

I told him that I was concerned about the possibility of Lyme disease, false negatives on the ELISA tests that I had, and that 28 days of doxy may not treat other co-infections if they were present. He then became very annoyed and proceeded to treat me in a very condescending manner while keeping the door wide open to the rest of the office! I found this to be quite out of line since I wasn't even dressed yet.

He told me everything that I read was "wrong" and no infection could have survived the 28 days of doxy. He also said that there are no co-infections in VT. This is untrue and besides the point since I had recently traveled down the coast to Florida by car.
He then suggested in a condescending (not a genuine way) that I should go upstairs and see the neurologist because the symptoms are clearly in my head as I don't have arthritis and there is nothing wrong with my joints.

"Go get a second opinion if you like" he said. "They will tell you the same thing I just did."

The funny thing was, the woman that was coming out ahead of me was also told to do nothing for her joint pain. Apparently this doctor just likes to collect money without actually helping his patients in any way or finding out what's causing the pain. I'm glad that there are online websites for patients to review doctors. I now don't have much faith in the original family doctor that I saw (the one who sent me to him highly recommended).

Springsjean--so true. . . I was just so upset about the whole thing. I guess just because, though I had heard about this type of thing, it had yet to happen to me!! I would love to read the essay--did someone post it on this site?? I would love to send Burrascano's guidelines to my daughter's pediatrician with a letter stating that he better learn to recognize "late-stage" Lyme because he would probably be seeing it a lot more often!! At this point, I think he may still just blow it off. . .

Thank you Achieving Grace--good suggestion. Did you see how I worded it above? Better?!!

Yazzer--agreed, I would hate to wish this on any one, but until it hits home, doctors may continue to be blind to this new epidemic. There may be one or two actually, that I might wish this on. . . LOL, just kidding. . . .

Gee Summer, that dr sounds a bit full of himself!! Hmmm, that sounds very familiar. . . .

And, Bucci--GREAT idea!!!! I am going to remember this one! And I agree, I think that Lyme is becoming epidemic. People are going to be forced to recognize this. I do hope this is the year!!

Thanks for letting me vent ya'll!!!! I feel better!! Still incredulous, but at least. much calmer!!!

Thanks Borderlyme!!