Dr's appt not good...I am SO upset!

Lyme Specialist my ***.

My appt today was a DISASTER. This guy was supposed to be a Reumatologist who specialized in arthritis, LYME, and autoimmune diseases...this he advertises on the hospital website. I am thinking FINALLY someone who will help me!

I could not have been more wrong.

The reason I went was bc my immunologist felt that I was dealing with chronic Lyme and should see someone more well versed in the disease than him. How did he come to this conclusion? He READ all my labs I brought, LISTENED to my issues, and how long I had been dealing, and my response to the doxy...which was to herx. Alot.

This Dr came into the room and said 'So what's your story' I was taken aback, tried to regroup and tell him...except he kept interrupting me to ask another question. Now it has been increasingly difficult for me to even HAVE a conversation, nevermind one that involves being on the spot. I wrote down all my symptoms, supplements and brought all my labs. He looked at the med list, did not look at my symptoms nor did he look at my labs, preferring to 'start from scratch'...he asked me about hepatitis(I have alot of tattoos) as well as tried to explain to me how the immune system works.(dude...you have no idea...)

By the time the appt was done, I got to walk away with a lab requisition for labs I have ALREADY HAD DONE NOT 3 MONTHS AGO...but he would have KNOWN that had he looked at my labs. He lists the dx as arthritis.  He also said I might have some Rheumatism, or possibly a 'little bit of Lupus'...Really? How the everliving &^&^$^%^ does someone have a LITTLE BIT OF LUPUS??? Or, maybe Fibromyalgia since I have trouble sleeping. He also lectured me on how I needed to be open minded, eat healthy, get enough sleep and exercise and sometimes that makes a WORLd of difference. It was then I informed him I have been a runner for the last 25 years and train for marathons and ultramarathons when I can run, I have been a vegetarian for 20+ years and a raw vegan for the past 5 years so I think I have those bases covered...and this lecture coming from a man who was very overweight and has probably not seen the inside of a gym this decade. BUT he said he wanted to do raw vegan but could 'never get there' ...I did not even respond...

THEN he asked about the doxy. I told him I have been on it for about 6 weeks. He asked if I felt better and I said no, worse actually. He asked if I was still on it and I said yes...and he asked why? I said I thought feeling worse was par for the course for  while. He said I had been on it long enough to eradicate most of the Lyme if that was what I had. But 'you know, it doesn't HAVE to be Lyme'...Then he said to stop taking the doxy. According to him, I have had enough. It was all I could do to get back to my car before I just broke down and sobbed.

I really thought this would be it. He would be the guy to *fix* me, give me hope and make me feel better. Uh, not.

Basically, I am just supposed to eat a good diet, exercise and drink plenty of water while the magical feel better fairies come and stuff rainbows and butterflies up my....

I am so upset I can't even see straight. I don't know what to do now. I can go back to my immuno. and I know he will work with me to a point...gah. I do NOT recommend this guy.

 

So sorry for your experience but no surprise to me.  I went to a number of doctors who all told me MENOPAUSE.  Really you get headaches every single day with severe stabbing joint pains from menopause?  Anyway, I got the name of my first LLMD from one the lyme disease associations.  I waited 4 years and found out on my own that the first doctor I had seen misread the blood work and it showed 3 significant bands.  Anyway, I had a whole folder full of lab work, symptom list, MRIs, etc. and he read it in the office across the hall for 5 minutes and then came in and spent all of 10 minutes with me.  Asked me if I ever had accupuncture, gave me a prescription and sent me off but not before paying over $750.00 for hte visit and blood work.  Needless to say I herxed terrible and when I called his office when I thought I was going to die, he shrugged it off and said I told you you would get worse before you got better.  I never went back.  Made the mistake of wasting my time with an infectious disease dr. for the next 9 months and when I kept getting worse and he told me "it's a tough disease, but it won't kill you" I left there and never went back either.  I am now going to a wonderful LLMD who listens and explains and takes the time to treat me as a person.  It is very very scarey.  I all but lost my faith in doctors but I think the truth of the matter is you almost have to do all the research yourself and be your own best advocate.  I just feel for the elderly or sick who cannot do that.  Best of luck to you. 

I'm really sorry to hear that! Everyone thought I was going crazy. they even locked me in a psych ward. i spent 10 years searching for an answer and was kicked out of my family as a teen and eventually became homeless when I was too old for help from the gov and other programs. I've been pulling myself out of that hole and my naturopath finally figured it out a few months ago. Don't give up hope! keep advocating for yourself and keep trying!

I found a LLMD in my area by going to http://www.chroniclymedisease.com/llmd-referrals. I received an email listing LLMD's in my area. I am on week 4 of treatement and am seeing some results - and no run-around!

Good luck - you will find someone that can help, they are out there!

RR:
If your immunologist works with you and follows either Dr B's protocol or someone elses that has a proven record of success in treatement, you won't need to see anyone else. I believe we all respond differently to treatement, so I believe Lyme drs adjust treatement based on the patient's response. Maybe you should see an LLMD and he can work with your immunologist. I went through a similar experience with a Inf. dis. dr. It was a waste of time and $$!

He advertises on the hospital website that his interests are, among others, Lyme DIsease. My theory now, is his interest is in proving people DON'T have it. So, my 9yo son is more LL than this guy....I am VERY much looking forward to my follow-up appt...man, I will be ready.

I know of 2 LLMD's in my area but the issue is I simply cannot afford to pay out of pocket for appts. Neither Dr. will accept insurance if you are coming in with Lyme...which I think is BS but...so, I am trying to find someone open minded enough to work with me. I am very much hoping and thinking my Immuno guy will...I have to call him so I will ask. He is SO awesome and already told me he sees alot of patients who 'fit the profile' so maybe I can help him help others...

Traveler...really? Could you give me a link? He is pretty receptive...

Wow! I read your story and almost the same thing happened to me. After five yrs of suffering going Dr to Dr, I thought I found the one and instead ended up in the parking lot crying trying to figure out the best way to kill myself. Obviously that didn't happen but I feel your pain. They can be so arrogant and they brush off Lyme disease to the point I had a neurologist slam his hands down and say "stop bringing up Lyme disease"! he says everything is from Fibro.. Well if that's the case, I have the worst case of FM in history.

Ugh. It truly is a shame...I am going back to said Dr. for the follow-up he requested but mostly so I can tell him how I REALLY feel. And to possibly inform him that if he is going to adverties that he is a Lyme specialist he should disclose that he is specializing in it NOT existing, not that he can help cure it.

No worries :) I got the links. I am not here every day so I actually forgot too! Brain fog...