Infectious disease

[speechgeek]

I saw infectious disease today. he was much nicer in is manner of speaking to me than I had expected and he loved the time line. That is about all the positive I can say about the appointment.

He is re-doing my lymes test to include a blood PCR even though I am on antibiotics. He gave me 2 more weeks because he never gives more than 8 weeks ever. He does not feel that I have lyme even though there is tick and he brought up MS as well. and he felt that peripherial neuropathy could occur in MS.

He feels my needs will be better met with neurology and he says  it is a huge leap from tick bite to symptoms....ya what ever. I go to Hopkins 4/21

He says the western blot looks for the antibodies the body produces when fighting a disease and not the disease/infection itself. So if my testa re 0 then my body is not fighting anything.

he also thinks that lyme can start as lyme and then turn into an autoimmune diorder. He also thinks that my diagnosis of virual menegitis 3 1/2 years ago may be inaccurate. He says he understands that my life is hell however as a scietnist he can not warrent further treatment without objective measures.

As a speech therapist/ clinician I understand this to some degree about object ve measures although a diagnosis of peripherial neuropathy is pretty objective.

He also mentioned the placebo. effect....with that said my mind has so much control over my body that by next week I will look like Jennifer Aniston......that's right I am going to placebo myself into being one hot chick!!!!

So folks as it stands I am girl with no diagnosis, a missing tick in a zip lock bag, taking antibiotics for a disease that I may or may not have.

Speechgeeks mood VERY VERY SAD!!!!!!

Rebeccah

[JackieCalifornia]

Hey, come visit with us over at the Lyme Disease forum.  Sounds like you could use some company.

We've all been through the mill and can perhaps give you some information from our collective experience.

There is a recent book called Cure Unknown by Weintraub that I highly recommend -- it describes what people have gone through trying to find a diagnosis and treatment and the mess that the scientific and medical communities are in about Lyme and its coinfections.

The concensus seems to be that neurologists are the worst at diagnosing and treating Lyme:  they have drunk the koolaid put out by the CDC and are often very rigid in their approach.  

Good luck to you; wishing you well.

[spastic]

I think you are on the right track. I too, had to see an infectious disease doctor and he was very good at his job and ran $6000 in tests only to tell me at one time I had the EB virus. After all the results were back in he called me on the phone and told me, he believes what I have is neurological, probable MS. I already knew that from my rheumy who also suspects MS.

You will be in good hands at Hopkins and keep us posted.

Big Hugs,

Spazie Ada

[Momzilla]

I think of all the mimics of MS, Lyme is the most frustrating to distinguish.  I agree with Elaine that you are probably on the right, frustrating path.

You're back to the drawing board, though, unfortunately, and I know how excruciating that is.  I'm sorry.

Hang in there.  Someone will know what to make of this.

Hugs,

Zilla*

[speechgeek]

Elaine

Thanks for your thoughts. I do aprreciate them. My mom has chronic lyme and  had negative lyme test (ELISE and Western blot) then a  positive PCR urine 2 years after onset of symptoms. She has been batteling it for 10 years. The tests are not reliable per infectious disease and ILADS.

I do not agree with long term IV antibiotics but I do agree with more than a 4 week s and maybe even several months. My mother had several years of a pick line IV treatment and I agree there is a fine line between too much and not ennough. I have responded well to oral amtibiotics.


I have had an EMG and I have a confirmed diagnosis of axonal peripheral neuropathy via emg/ncv in 3 out of 4 limbs.

Having a loved one with chronic delbilitating lyme.....MS ....lyme ...not sure there is much of a difference. My mission is to rule out ALS. I will gladly accept MS or Lyme over ALS which is the other diagnosis hanging over my head.

because My symptoms are all neurological they wan't me to go neuro.

I have an appointment with Hopkins neurology on 4/21 with a doc that specializes in Peripheral neuropathy.
I have an appointment with a lymes specialist next week.

rebeccah

[monotreme]

Hello  Rebeccah,
I have a different outlook on your situation.  I think the doctor saved you alot of money and aggravation.  If you had gone to some other Lyme doctor, he may have told you that you still have Lyme even though the tests were negative.  He may have tried to start you on IV antibiotics.  This could have damaged your body unnecesarily and cost alot of money.

Craig was told over and over again by people to go to a Lyme doctor.  His Lyme tests by his PCP  were negative.  But still, people kept saying to go to a Lyme doctor anyway.  Almost a  year ago, he went to a Lyme neuro in Maryland.  This doctor has a specialty of Lyme, and has recovered from chronic Lyme himself.

Even though Craig had another Igenex Lyme test which was again negative, he insisted Craig could still have Lyme.  he stressed the antibiotics.  But I just can't believe someone could have Lyme if the bands are all negative.  

This same Lyme neuro also wrote a book on Lyme.  He is actually treating chronic Lyme with LDN with great success.  He also believes that chronic Lyme can present as an autoimmune disorder, so that is why he is now treating it with LDN.

Are you going to Hopkins neurology or MS center?  I think you are better off going away from the Lyme angle.  It was very hard for Craig to do because he would so much rather believe he has Lyme than MS.  But to take antibiotics for negative tests, seems like bad medicine.

By the way, he had ticks on him too.  And we also woke up with one in our bed after a hike the day before.  So we would have much rather liked to think there is Lyme involved than MS.  But the science behind treating zero bands is questionable.

Have you ever had an EMG?  Has anyone else said you have a peripheral neuropathy.
Elaine

[young at heart]

I AM SO SORRY YOU ARE GOING THROUGH THIS WITH THESE DRS.

WHY IS HE SENDING YOU TO HOPKINS?

IF HE REALIZES YOUR LIFE HAS BEEN HECK THEN WHY IS HE  DISPUTING ALL
THE IDEALS OF LYME AND VIRAL MENIGITIS?

PLACEBO EFFECT,WOW DO WE GET TO THINK OUR SYMPTOMS AWAY,THAT WOULD BE NICE.

I SURE HOPE HOPKINS CAN PROVIDE SOME ANSWERS FOR YOU

SENDING YOU HUGS AND PRAYERS

T-LYNN

[speechgeek]

I don't know what any of the FIVE doctors i have seen hope for with hopkins other than they don't know and they think they will know. They just keep passsing me along

rebeccah

[Rena705]

Oh Honey...I can understand you being sad.  I just seems as though things are not doing any changing with you!

What exactly does he expect to happen FOR you at Hopkins?

I sure hope that you get somewhere soon cause this living in limbo can't be doing you any good.  My hopes are with you Rebeccah and maybe Hopkins is the answer?  I just don't know...

but Lots and Lots of Hugs,

Rena