I cant believe i still have not been there.

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veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/23/2009 7:31 PM (GMT -7)   
For those of you who may remember I was asking for advice about going to my first pain clinic apt. That was like 3 months ago. My apt is for sept 18. I cant believe it would take so long for a new patient to get in. And my doctors office forgot to send my file there 2 times.

I am afraid because I have Lyme disease. And We cannot take steriods or anti inflammatorys..We also are natoriously negative in testing.

I was tested with a medium result. I do have lyme. My daughter tested positive . she contracted it congenitally from me.

So I dont know if they will believe me that I have Lyme and that I am suffering.

I thought of just going with the diagnosis of fibromyalgia that my neurologist tried to give me, but then what excuse would i have for not taking steroids?

I just wonder what your expieriences have been I wonder if I will come out of this with pain management.

It is horrible what has happened where a medicine that can make me be able to stand in front of someone and be normal is so stigmatic because of abusers.

At least I have a swollen knee, and 2 huge bottles of antibiotics and the tests. I hope I will be ok.



How is everyone here? Love and healing from Veronica comes your way!!!!
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/23/2009 8:00 PM (GMT -7)   
Veronica,
There's so much that can happen in the process of transfering records from one doc to another I have learned to just get my own copy (although you may have to pay a small fee) and then COPY those (so you keep a set for yourself) and take them, in hand, to your doctor's appointment. Include records from the doctor who diagnosed your lyme, and any portion of them which addresses medications you can't take.

If the pain mgmt doctor tries to prescribe you what you can't take, request that he/she speak with the doctor who's treating your lyme first, but hopefully it won't be necessary if it's in your records.

It's a pain in the neck, but getting the records is worthwhile, as you then know what's in them, and can take them to any new doctors. I've found things either don't get sent, get lost in the fax process, or are somewhere in a stack of papers.

Good luck!

PaLady

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/23/2009 10:56 PM (GMT -7)   
Thank you palady. this is such a controversial disease that all of these instances are contradicted by politics of this disease. I will have to figure it out.

I took what is called a western blot test for lyme it is the most sensitive it shows different parts of your immune system reacting to lyme the cdc states u must have a certain number of reactive parts to be positive, when in fact one reative part is significant, and the longer you have had the disease and the sicker you are the lesssssss likely your immune system is detecting it properly it is very smart it hides in so many ways u prob dont have time to hear.

So i have lyme specific reactions but not enough for the cdc to state positive.

Although my daughter who is young, 23 months had a positive test contracting congenitally, because she hasnt had it long and she is not sick her immune system is in control for the moment and producing antibodies to show up on the test.

see the test only looks for antibodies not the bacterias.

Any way chronic lyme is controversial and dangerous for the lyme doctors, so they dont like to be referenced, for fear of loosing their licences, which has happened for treating w longterm antibiotics upon a clinical diagnosis because the persons had lyme but their tests were negative and the doctor was generous enough to know it was lyme and still treat the disease which goes into a cyst form which in unpenitrable with antibiotics therefore longterm abx as well as different types to kill cyst form must be done.

It is in legislation right now, the guidelines will be changed by the begining of the new year.

but this is the state we are in !!!!!

So as patients protecting our doctors we dont really reference them without a positive test.

So i havent had enough parts to be positive u must keep testing just to get that evidence.

200 dollars a test.

So basically i am just going to bring the tests, or i dont know what to do.

All i know is i am dieing each day. And the lyme doc i see is in the next state because my state is bad they dont believe lyme exists in my state ohio . It is a joke it is very sad!!!!!!


Sooooooooooooo many people have lyme and dont know it!!!!!!!!

all the diseases of unknown origin must be considered for lyme....

Fibro, MS, ALS, alzheimers, parkinsons. How about that it is good to know for a person you may love dieing from one of these diseases,

Tooo have a potential cure of antibiotics or other protocol for lyme and other parisites like the salt/vitamin C protocol.

thanks again palady Veronica
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/23/2009 11:03 PM (GMT -7)   
Veronica,
Wow - I didn't realize all the politics of lyme disease! I hope the pm doctor you go to can understand the tests, but it's more than sad that you have to try to protect your treating physician.

Gosh, all we're trying to do is get decent medical care. I can't believe how crazy all this gets!

Hugs,

PaLady

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 8/23/2009 11:18 PM (GMT -7)   
Veronica,
 
Good luck with your pain clinic appointment.  I do hope you can get him to understand your situation.  I am so sorry to hear of your daughter's congenital Lyme.  I hope she receives very successful treatment.  Best of luck to you both.
 
I don't have any advice to offer.  I have MRIs and such that show lesions, a herniated disc and whatever that gets me the medical support I need to treat pain.  Whatever tests you can bring would still be helpful.  Can you bring those and the articles saying that the CDC will changing its view and treatments on lyme? 


Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/23/2009 11:27 PM (GMT -7)   
That is a wonderful idea gretchen thank you!

And thank you for caring palady and gretchen.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

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