Lyme Disease Support Group

This past few months have seen Dannette antibiotic free after her white blood cell levels crashed and her LLMD has refused to resume treatment despite worsening symptoms.

He says he wants to see her white blood cell count in the normal range. He had her GP refer her to a hemo-oncologist.

She wants to do a bone marrow aspiration and we want to know if this is wise especially as Dannette is autistic and getting her to the GP requires a sedative.

Worse, the HO refered us to an infectious desiease person who told us that as far as he is concerned Dannette CANNOT have Lyme. He is IDSA for the record. This is the SECOND IDSA guy one of Dannette's doctors has asked us to talk to.

He wants an HIV test and a nerve conduction test and a spinal tap.

The problem here is that he is also trying to get the HO to refuse to treat Dannette if she/we insist on a Lyme diagnosis.

He was very rude and he bullied Dannette and she was sobbing when we left his office. When we got home she refused to speak at all and then confessed to being very afraid and to thinking of suicide as "no one" will help her.

Please help us if you can. Any advice, referrals, or even prayers are welcome.

Steve

I'm wondering if you should find a new lyme doctor for her. This all just seems a bit "off" to me. I'm no expert though!

What is the spinal tap being done for? Why the tests for HIV? Have you guys tried taking something to help raise the white blood count?

~~~Please Find a new LLDr. Non-LLDrs, those who do not follow ILADS guidelines, have no business dealing with Lyme Complex Disease, or ignoring clear signs of infection by following faulty guidelines.

~~~Let a LLDr weed through ruling outs while continuing to treat Lyme. Non-LLDrs will only waiste your time by not treating Lyme while researching other possible afflictions.

~~~Please tell Dannette our thoughts are with you both. It is very important to us all that she remain with us and continue to fight the good fight.

~~~Please keep the light of hope on.

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread ~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell

in the beginning of my treatment i had those thoughts. i felt like i was never going to get better.

i looked out my 13 floor condo for a week and just wanted to jump. i did not want to be a bother to anyone. i did not want to be a burden.

thank god i had some of my brain working. as this lyme was trying to overcome me.

i felt like my body was literally outside my body only being attached at the right arm. i know this sounds very weird.

but this was all due to the lyme. this was not me and was never me.

this is so important that you must get a list of our doctors who can help you on our doctor referral list.

my doctor #2 was infectious disease doctor. notably a HIV doctor. it wasn't until i found the correct doctor and then i found doctor#3, i am almost back to myself again.

she definitely needs the proper diagnose and the only one to give it is a LLMD. a real LLMD.

please request a LLMD, Lyme literate medical doctor. please post in the doctor referral.

go back to group home, then back to forum, you will see first subject is doctor referral.

click on 'start new discussion'

give as much information as you can, you age, have you ever been treated, etc.

also if you live near a border state list that as well....

from that post someone will send you a PM personal message that you will find on the left under your user name.

please double space all information for the request and also on the forum.

we will be praying for the both of you. how lucky she is to have you. yes we know how horrible this disease is.

we are not going to get better with one or two session. this takes time, good sleep, good diet, she needs to stay away from anything negative.

our prayers are with you both! dannette stay positive. we are here to help you go thru this...

please ask any questions, someone here will always come to the rescue.

I hope Dannette can walk through the frustration to find a doctor who can help!

Jordana

Betty, I have noted the number down and really appreciate the added help. Thank you all very kindly for the thoughts and input.

Dannette has a doctor's appointment tomorrow and is finally asleep but I will let you all know how it goes. Thanks again, good night - Steve