Lyme Disease Support Group

When I see them they show such a lack of interest in my condition and I feel as though I'm on trial regarding how horrible my pain is and how bad the other symptoms affect my life and quality of life.

I can't work and have been unable to do so since Sept. of 2009.

I've had my car repossessed, my credit is NO GOOD, and I can't even have a bank account anymore!

Let alone the impact this has had on my loved ones! My children and I aren't a close as we used to be because of this horrid illness.

I'm in bed most of the time because of pain and fatigue, whereas I used to be much more active with them.

My youngest is 13 and I know this illness has changed who I am. I still tell her how much I love her and I try to be part of her life more and now she's just blocking me out.

It's devastating. Seems I've gotten off track a bit. But I'm just so very, very TIRED of feeling as though I am on TRIAL for my suffering!!!

So sick of it. Any suggestions on how to fight this?

Has anyone else felt this was? I feel so alone in this.

The worst thing of all for myself in the big picture of my life, with this illness, it's stolen the Possibilities away from my mind and future. So tired of feeling like I'm on trial.

Plus, as of lately, my body has been going numb and stiffening up like at the elbows to where I can't straighten them out.

I'm so frightened on what this is doing to my body. Last week I awoke and from my hips down, my legs were completely numb.

Was wondering the first signs of when lyme beginning to kick in

neurologically? How much damage could this be going to me!?!?!

It's frightening and when I tell them I have no good days they don't believe me. They dont' believe much of anything I say.

I've been in treatment since April with an LLMD and on doxy from April to June, then June to two weeks ago amoxicillin.

I'm back on Doxy, and he's finally added another abx which he said he was going to do back in July but did not.

It's hard for him to focus (I'm guessing) as well because they State Health dept is investigating him because some small town pharmacist turned him in for Rx'ing ABX's for such long period of time.

Anyone else can relate, especially with feeling like you are on trial to prove your severity of pain and quanitiy of symptoms??? Please share.

I feel so alone right now. More so than usual, I should add.

Please help!

Jeanette

Post edited by: jeanetter44, at: 11/14/2011 01:57 AM

emphasized dx/symptoms, bettyg, leader

Post edited by: Bettyg, at: 11/15/2011 02:02 AM

I am so sorry for all that you are going through with this disease...and it's a sad fact that what you are going through is a common experience of many Lyme patients.

1) With your children (as a Mom this really hits home..)- have they watched Under Our Skin...or read any good literature on Lyme disease.

I have 7 kids...and during my first year of treatment- my oldest daughter had the HARDEST time understanding what I was going through.

(She is now in college/pre-med- wants to be an endocrinologist & starting a Lyme awareness group on campus- God works in mysterious ways....)

2) Lyme is a neurological disease...some LLMDs will say that all Lyme is neuro-Lyme.

If this was me, I would want to make sure I was on a good abx that penetrated the central and peripheral nervous system. I would speak to my LLMD about minocyclene and ceftin.

At my most recent appt. my LLMD said that doxy seemed to be more helpful with muscles and joints/ceftin- with the nervous system...

3)Jeanette- the financial problems are so hard with Lyme patients...there are some resources available to help

(Betty may be able to help with this...)

I have seen both local & nationwide fundraisers done- often for single Moms- to help out with the cost of treatment.

Are you living in your own apartment/home...

do you have family you can stay with?...

On-trial- yes, I think we have all felt this way...but now I just don't go very often to non-lyme literate doctors...

in CT- where there is no excuse for ignorance- MANY physicians still just don't believe Lyme disease needs to be treated long-term...but some do...

I think the only thing you can do is stand your ground with what you know...It's a very strange scenario when the patients know way more than the doctors to say the least!

I will keep you and your family in our prayers...

I pray for the day when the truth comes out about these illnesses and we don't have to feel like we are "on trial"....

please feel free to PM me anytime you need someone to listen...no one should have to go through this alone.

Hugs,

Jackie

Post edited by: shorelinelyme, at: 11/14/2011 02:21 AM

broke up longer paragraphs for neuros like me; too much to try to comprehend/read. bettyg, leader

Post edited by: Bettyg, at: 11/15/2011 01:57 AM

i reformatted your posts, i couldn't follow them and emphasized things for each of you so we can be sure to address all jeanette's needs ok ;|) thanks for understanding.

FINANCIAL RESOURCES GALORE HERE

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://tinyurl.com/4es7942

bettyg, leader