Had my follow up with Rheumy just to see what his thoughts were (eventhough I was already diagnosed by Infec. Dis. dr).
I am taking the advide of another poster on seeing free drs to try to get as much antibiotics as possible.
Unfortunately it's not working!
All my tests were negative.
He told me Lyme is over diagnosed! I put up a fight! He was surprised how much I knew about Lyme and that the tests are very inaccurate.
Basically we were disagreeing on alot of stuff.
But I had to educate him! LOL
He half agreed on some things but could not diagnose me with Lyme because my WB was negative.
But he was willing to help me get tested thru Igenex as long as I was willing to pay for it.
So, he had to give me a diagnoses on something yesterday.
Can you guess what it is?
Fibromyalgia=Like Syndrome!!!
This even after he told me Fibromyalgia does not cause Neurological symptoms and I have alot of those!
I don't even have the qualified tenderpoints.
Can't wait for my appt. with my LLMD on Nov. 18.
In the meantime I have my appt. with the infect. dis. dr. But I am not sure he will continue to give me anymore antibiotics.
Thanks for listening!
Posted by Misfit (Member # 26270) on :
Good for you for putting up a fight!! I saw an ID dr., who (even though I have a positive test) said that I no longer have Lyme. Talk about a joke!!
I saw a rheumy this past tues., and he told me that I have CFS and FM. I knew that already. But I know more now, and asked him WHAT CAUSES CFS. He tells me it's a form of arthritis. That was a new one to me.
I tried to educate him about Lyme and co's, but he wasn't listening. Spent 45 minutes telling me what a rheumy is, and what he can offer. None of which I wanted, lol.
Anyway..hopefully your ID keeps you in those abx until you get to the LLMD!! Good luck!!
Posted by arkiehinny (Member # 26546) on :
Oh my! We could put together a book!
Posted by Misfit (Member # 26270) on :
You know, we could write a book. My sister keeps telling me I need to, lol. I told her I'd have to put it under "fiction", because it's not to be believed. Most don't believe it anyway.
I told my DH after my rheumy appt. that I needed a strong drink to get the taste of the s**t sandwich they fed me outta my mouth. Needless to say, I don't drink.
I've read so many stories here from people who've been fed the same sandwich I was. They need to change the menu!!
Posted by Keebler (Member # 12673) on :
- They won't change the menu but you can stop going to the same restaurant.
Everyday here, many posts from patients thinking they could go to lyme-ignorant doctors and get good treatment. It's not going to happen no matter how many times it's tried.
It's not going to happen. They will not change their menu but you can stop hiring them to offer you inferior fare.
There are already many books written by both patients and doctors of the wide range of mishaps. The books are out there, full of horrible experiences but also how to find good LLMDs and best understand the complexity of all that involved.
Time is best spent getting well under the guidance of a LLMD rather than going back time and again to doctors who are not educated. That outcome is predictable. it will get you nowhere, over and over.
See a real LLMD, get on the right track. Don't waste time with a rheumatologist (or neurologist or ID doctor) unless they are one of the very few who are LL. -
[ 10-16-2010, 06:02 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Between now and your Nov. 18 LLMD appointment, you might consider taking Allicin (Freeze Dried Garlic) - or Olive Leaf Extract - to hold you over.
Probiotics, too, of course. Away from both Rx and supplements. -
Posted by randibear (Member # 11290) on :
i think we could all tell stories about the docs we've seen.
i still remember the one that said i was sick because i was too "large breasted" and my bra was too small.....
OMG!!!!!
Posted by John S (Member # 19756) on :
If we are ever proven right. I am going to track down some of these doctors and demand an apology.
Posted by sk8ter (Member # 8671) on :
I went to a ID doc and did not bring up lyme 2 years ago. I did bring my lab tests that show high EBV, high HHV-6, Pos Mycoplasma Pneumonaie. He says everyone has these. i said six times higher than the norm?
Then I asked if knew about the Dr. Montoya clinical studies with Valcyte on CFS at Stanford. He says very arrogantly, " I do not know what kind of doctor Dr. Montoya is". I answered ," He is the head of the Infectious Disease Dept at Stanford. I think he knows what he is doing." I then handed him the study.
He glared at me. I said," Maybe just maybe you should keep up on the latest research...and I quess my appt is over? Thank you for wasting my time".
I loved every minute of it. But maybe he went and looked up the study. Who Knows???/
Posted by missing (Member # 22437) on :
Hahahaha!
good one sk8ter!
Posted by Misfit (Member # 26270) on :
Oh, I would LOVE to do what sk8ter did! And one of these days..I'm going to. I believe our chance will come.
We're going to get to go back and tell these ducks that we weren't nuts after all! Which is what I was told as well, in a roundabout way.
Said I need to see a psychologist. If only it were that easy. Duck.
![[lol]](graemlins/lol.gif)