[KarolH]

Hi everyone,

Update on me.....most recent I visited a Infectious disease doctor because I was told I have Lyme and needed to treat that b4 re testing for lupus.

Well, the ID doctor told me he did not feel I had Lyme and wrote a blood script to be re tested for Lyme. He said it is most specific for Lyme. It was called a DNA PCR.

Anyway, I got the results and there was no Lyme detected.....he was right.

So, he told me to get my butt back to the Rheumy doctor because he said it is either Lupus or a MCTD. I told him I found a better Rheumy doctor and I go on the 25th of this month.

So, now I do not have Lyme and I guess knowing this then the blood test results I got back last month really do point to Lupus.

Gosh, I feel like a ping pong ball and the doctors are holding the paddles and having a great time hitting me back and forth between them.

All I want is a dx and a name to go with it. I was UN-DIAGNOSED WITH MULTIPLE SCLEROSIS last month which is great yet I still have no answers.

Ever feel like your going back in time instead of forward???

Rant over, thanks for listening.:wink2:

 

[KarolH]

Whoops, did not mean to make the whole thing Bold in color.:blush::blush::blush:

 

[Katharine]

Hi Karol

My I can see why you feel like a ping pong ball. I suppose it's like a lot of things to do with auto-immune diseases; three steps forward, two back!

I hope that appointment on the 25th goes better than your last rheumy visits and that you really do get those answers. Things are quite a bit easier to deal with when you know what you're dealing with. Well, for me anyway!

thanks for keeping us up to date,

Katharine

 

[Lily]

Hi Karol,

Katharine hit the nail on the head, 3 steps forward and 2 backwards.............it's all too familiar to us all during diagnosis. As one nurse said to me, at least you know what you don't have sometimes that's the process, ruling so many other things out very frustrating :hug:

Good luck with the new Rheumy doctor, and make sure he knows what the ID doc said............docs often take on board other docs passing remarks and opinions.

love
Lily

 

[KarolH]

Thanks Kat and Lily,

I will let the new Rheumatologist know what the ID doctor said.

I will also let her know that my pcp, GI, Neuro and the last Rheumy doctor I treated with all think this is Lupus.

Gosh this is a exhausting road to walk down.

 

[Maia]

Hate to pong you right back... but did this doctor just completely dismiss the Western Blot results then? My understanding is that PCR is really very specific (meaning if you test positive then you truly do have Lyme) but has quite variable sensitivity (ability to detect Lyme). The ability to detect Lyme is worse in early infection....

Are you going back to the original rheumy at all - or just skipping that follow up appt to get the second opinion by the neuro recommended rheumy? It would be interesting to get his opinion on all this as he thought both were a possibility and he wanted to treat Lyme first.

It really is extremely frustrating to be bounced around like that, all the while not getting any answers or the right treatment. I think many, if not the majority have experienced that. I experienced it - but actually happened about 4 years after my initial lupus diagnosis which came quite fast actually!

Good luck and take care. I hope your appointments are coming soon so you can hopefully get more answers than you have now...

(((Karol)))

 

[Mrs M]

Hi Karol

Just wanted to say hope your app goes well and you must let us know how you get on please.
I'm right with you on the ping pong bit:hehe: It's sooooo frustrating but I hope you get there in the end.
Take good care

Mrs M

 

[KarolH]

did this doctor just completely dismiss the Western Blot results then? My understanding is that PCR is really very specific (meaning if you test positive then you truly do have Lyme) but has quite variable sensitivity (ability to detect Lyme). The ability to detect Lyme is worse in early infection....

Are you going back to the original rheumy at all - or just skipping that follow up appt to get the second opinion by the neuro recommended rheumy? It would be interesting to get his opinion on all this as he thought both were a possibility and he wanted to treat Lyme first.

Maja,

Yes, this ID doctor does not care what the Western Blot showed at all. He said it could be positive from a inflammatory state with in the body. He was confident I did not have Lyme and is even more so now that the PCR came back Lyme undetected.

Your right about the PCR test being very sensitive and it has to be handled right and done correctly. One will never know how the lab handled my blood.

I was going to blow off the first Rheumy and just go to the new one that my Neuro recommend but I have decided to see both. 2 sets of eyes/ 2 opinions.

The new Rheumy appt. is July 25th and my follow up with the first Rheumy is July 29th.

Should be a interesting week huh...:rotfl::rotfl::rotfl:

 

[lazylegs]

Hi Karol,

Your case sounds like an episode of House. First it is one thing then another. At least they haven't almost killed you along the way. Good luck with your appointments.

Take care,
Lazylegs

 

[halfpintfl]

Hi Karol, hurrrrah!!!! for "House". I also was mis-undiagnosed for MS, I am
telling you it is crazy. All we want is their knowledge that they went to yrs of
school for, and we get, "well, I am not really sure, let's just run a bunch of tests.
And we Pay for this!!! I send you gobbs of good wishes for the appt, and take along those recent blood tests. Please post what happened, when you get back, we are
all very anxious to hear how it went.((((hugs + wishes))))

 

[KarolH]

Hi Karol,

Your case sounds like an episode of House. First it is one thing then another. At least they haven't almost killed you along the way. Good luck with your appointments.

Actually LazyLegs the Rheumy doctor I have gone to did try to kill me.:rotfl::rotfl:

He prescribed Amoxicillin for the Lyme (that now I know I don't have) and I am allergic to Penicillin. It is clearly written on my chart that I am highly allergic to Penicillin so it left me wondering how competent this guy really is.

Thank god the pharmacist is on the ball!

 

[KarolH]

Hi Karol, hurrrrah!!!! for "House". I also was mis-undiagnosed for MS, I am
telling you it is crazy. All we want is their knowledge that they went to yrs of
school for, and we get, "well, I am not really sure, let's just run a bunch of tests.
And we Pay for this!!! I send you gobbs of good wishes for the appt, and take along those recent blood tests. Please post what happened, when you get back, we are
all very anxious to hear how it went.((((hugs + wishes))))

Well I must say it is good to know that i am not the only person who was told I had MS only for it to turn out to be something else. Your right, they get paid big bucks and we get shuffled from pillar to post.