this is going to b fun

So, this is just so therapuetic for me to think about....my llmd wants me to followup w/ my primary, regarding a little thing, unrelated to lyme....i havent seen my pcp much, cuz they werent much of a help. I was told my dizziness, vomitting, breathing problems,palpitations were all due to anxiety, even though i said i wasnt anxious. My fatigue, they claimed was from depression(even though i said i love my life)...primary is in a clinic...when i went for a physical for a new job (even though i was sick as a dog)he said he will have to write anxiety, depression for my history on the forms...when i mentioned lyme, he said tests r normal, i can refer u to a pyschiatrist.,.it didnt matter that i was up all night vomitting and falling!) Then i switched, this new primary wasnt as mean, but wasnt a help. They r both in the same clinic. anyway, my llmd gave me copies of my labs, to show my Primary. for follow up. looks like.those labs came out positive for q-fever, mold...and exposure to a zillion other co-infections and viruses( mycoplasma, lyme,EBV, herpes 6 virus, and others) I cant wait to give him the labs, and innocently say `i was told to follow up w/ u, to make sure my UTI is gone...here...'

Just really tempted to go back to first jerk to ask to recheck the urine culture. Everything is computerized and in the same clinic, so i think it doesnt really matter.

Thoughts anyone? Which of two would u go to? In a way, i dont want to look at or go back to the first primary....but the thought of going back w/ the stack of positive labs seems so awesome!

My LLMD has asked that I follow up with other specialists when she is out of her comfort range (endocrinologist, cardiologist, gastroenterologist) so that is normal. And a LLMD is hard enough to find, a "lyme friendly" MD is even tougher. But then again, you're not there for lyme treatment so their opinions on the matter are truly irrelevant. The question a lot of us grapple with—is how much to share about our lyme & co. tx. I think it's important to share the dx but who, really who? effectively understands the tx, right?

I agree w/ Razzle that presenting this information to those "MDs" won't help YOU. But there is every possibility (maybe not likely) that helping them connect the dots would help them and more importantly, help someone else.

So, I would still share the info. It's not your job and you cannot make them learn or listen, but it is the reality of our situation that they need help in doing so. If they want to ignore or reject the information after it is presented to them, they will. But there is also the slightest possibility that you will get someone's attention (nurse on staff?) and in my mind, that is worth it.

You shouldn't expect anything in return or any acknowledgement. That is where you draw the line—before doing anything accept the fact that this is a one-way transaction.

I shared with my ND (with whom I spent over $20k without a single discussion of lyme & co.) an update of the lyme & co. dx and my viral load, etc… with a tone of celebration that I finally know what is going on and a suggestion that now that these other issues are being targeted I can better implement some of the protocol she and I worked so hard on (in other words—no blame) and I heard nothing back from her. I was pissed but not surprised. But I bet you 10 to 1 she suspects lyme & co. with the next person who walks into her office with my sx…

Ultimately, you need to do what you feel most comfortable with and spend your energy where you feel it's best served. But if you do decide to push the envelope a little bit—let us know how it goes. ;)

-p

I know d2gw… It's so horrible that it's criminal.

You should not talk to any MD unless you really want to and have to. I don't blame anyone for never wanting to step foot into another office again and certainly, never again engaging with previous MDs who have failed them.

But the thing is—if they are never aware of the evolution of our health cases—if no one ever follows up with them then they will never be given the opportunity for a broader awareness. That doesn't mean that they will embrace the opportunity but how else are they to know unless we share?

I don't say this to you or anyone as pressure to anything at all. Aside from a class-action lawsuit, sharing the truth may have an impact in small doses. Perhaps for some it's a better use of precious energy and more effective to sign the petitions for change. But when all is said and done I will be sharing the truth with my all my previous MDs. If I can help prevent anyone else from going through what I've been through, I'm hoping I can.

-p

My LLMD referred me to a psychiatrist, too. LOL I knew better (luckily) and I just smiled and kept asking my questions. This was before I paid out of pocket for three $300 appts and my lyme & co tests came back positive.

It's tough not to take their b.s. personally, but it really isn't personal. It's a combination of a very risky situation we all find ourselves in and the complete demise of conventional medicine as a profession and healthcare in general… but I digress.

You have every right to be angry—what a crazy path you've been on. I've read some horrific stories from lyme patients. I have doctor friend and I'll approach a stranger about these emotions but I have yet to share with her… it just hits too close to the sanity cliff. ;)

-p

I decided i wont bother wasting my breadth w/ the first pcp...if he wants to b a good dr. he`ll have to get educated on his own....mayb a lawsuit can help w/ that. (Ya, sorry guys, thats the anger coming out). I think i`ll just end up really frustrated, just as b4. My sxs made it clear that something was going on back then, but he decided to view vomiting as pysch. So i dont think there will b any change now.
The second pcp, felt bad, was encouraging, offered me antidepressants, cuz he thought it might help my muscle fatigue. He meant it so genuinely, u couldnt get angry. He questioned the lyme diagnosis, but never ever told me my symptoms were in my head! Yet, when i would go to him for a new random set of symptoms....he would say, whats going on w/ the lyme? I think he cares, and is a thinking indivUal. Gonna follow up w/ him....i think we might b able to have an open conversation. I think everyone here is right, i`ll feel better, and less frustrated....but im still angry, hurt, and the reality of the first pcp actions(and the ones b4 him) r a reality, and has effects! Did u guys get passed that emotional piece? Im sure u all had similiar reactions....as u progressed.
Also, imagine the people that niavely listened to their advice, and think their problem is depression or pysch....they r NOT getting treated! In fact they r getting worse....it is criminal! Especially when the docs know, and r whimpy!