LymeNet Flash: Had LLMD visit Friday-NOT GOOD-help

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Posted by Karen Mc (Member # 23354) on :

Hi everyone,
Hope you're doing well with all this snow and weather.

My computer service has been messed up since snow and I can hardlly get on..suppose to be gettting new service Monday-so it should be better??

Well, I had appt with my LLMD yesterday (Fri 12th) and ALL the lab work he had me do came back bad.

He said my Lyme and Babasia were full blown active ):

At least now I know why I've been feeling so crappy. ---lol (:

Im really scared because I see myself slipping back where I was this time last year.

He wants me to try Flagyl and drop the plaquenil for awhile and also to pick up Mepron.

Apparently the Mepron is very expensive and the drug store is out of it until Monday. Im not sure if it is too expensive if I'll even be able to get it right now.

I really would like to try it as I'm feeling so bad I am at a loss for words.

My Vit D and Vit 25 was low along with calcium and whatever else he tested. Even though I've been on Adrenal support it was low as well and hes having me add another supplement.

Actually in all he has added 6 NEW supplements along with what I was already taking.

fish Oil, calcium/magnes. B12/folic acid adrenal hormone and 2 things for detox.

Im suppose to drop Rifampin and go back to Bactrim.

I guess Im just so upset, depressed and feel like total crap and just needed to share...

I really don't have anyone but you guys (and gals) here to talk to--nobody really understands....

I just woke up, my head is killing me, my ears are ringing off the hook, I ache so bad and I just want to cry but I feel too bad.

The trip up yesterday was really rough on me..I had to drive and even though I took my son with me for company it took a toll on me.

Sorry for so much... Guess what I was trying to get to is...

I wanted everyone to know how visit went.. and to pray for me...

It seems like after a year I'm almost back where I started--even though I had improved and it wasnt a waste of a year...I guess the positive, active tests is just such a blow.

I have to work next week M-T-W and I don't even know how I'm gonna make it through THIS day.

I hate to complain becausee I know there are others out there so much worse than me but sometimes I just want to give up.

I truly believe if it wasn't for my faith and my son I couldn't do this.

Please, as I asked, pray for me and hopefully I'll be able to get the Mepron Monday and it will help.

Love,

Karen (:

Posted by Tony1996 (Member # 2084) on :

Karen,

Prayers sent. [Smile]

Tony

Posted by joalo (Member # 12752) on :

We're all praying for better days ahead. Hang in there you are not alone. [kiss]

Posted by Geneal (Member # 10375) on :

Prayers sent.

Hang in there.

Hugs,

Geneal

Posted by map1131 (Member # 2022) on :

Hang in there. It does get better. Patience is a virtue. So true, so true when fighting lyme & company.

Pam

Posted by Need Lots of Help (Member # 18603) on :

Karen,

I am so sorry you are having a rough time. I know I can understand where you are right now. I do see at least one good thing...your doctor seems to be trying to change things up to help you.

I know that isn't much consolation, but sometimes doctors keep on with their own agenda. I do send you prayers and I hope you can find a way to get all of your medicines.

Shalome

Posted by Lymetoo (Member # 743) on :

Karen,

I hope you will feel better emotionally soon. It's a tough disease to handle... esp emotionally.

One question... Do you FEEL worse than you did a year ago??

Sometimes a highly positive test means that your immune system is finally kicking in and it then shows up with more positive bands or stronger bands.

I would not let a test result throw me back. It's how you feel that is the most important.

I really don't know what your dr means by "full blown active." Do you?

I don't mean to downplay what you said, however! Just trying to give you a different perspective.

Posted by Karen Mc (Member # 23354) on :

Thanks everyone for the replys and prayers.
Sorry I hadn't replyed sooner as with the weather we have been having internet problems.

Lymetoo...Good questions as to what my Dr meant...I was wondering the same same myself. I will have to ask him during my next visit.

I'm sure all can relate...during the visit...you listen carefully (I even took notes this time) then you walk out and your head is spinning and you're like...ok ...what did he just say..

I remember with 2 of the supplements he said don't take such and such with such and such...

and such in such with such and such but I can't for the life of me remember which two--of course I didn't write that down--lol

That is a very good point about having the higher(stronger) bands...I will also ask him about that as well. Thats kinda what I was hoping and thanks for sheading that perspective (:

As far as do I feel better....yes and no.

for a while I was doing better but lately it's getting to where it is almost as bad as a year ago.

My body just aches all over and is numb..kinda like when you've been out in the cold, and I really hate the "weirdness" my head feels. Kinda like your body is one big toothache ):

I am hoping the new supplements that should arrive later this week will help.

I still haven't heard from pharmancy yet about mepron (its still early Mon am)... but Im probably gonna wait on it anyway...

Again thank you for the prayers.

Karen (:

Posted by trishee (Member # 9699) on :

Karen,
Hang on and know you are not alone. Sounds like your disease is doing exactly what it does to a body and you must stay positive. Dont let it win.
Sounds like your LLMD is on top of things. Listen to your body and rest when you need to. Allow the meds to work and keep your LLMD posted w/any developments. Keeping a journal w/daily symptoms help to chart progress when sometimes you don't feel like you're progressing.
blessings,
Trish

Posted by SmurfyMom (Member # 13688) on :

Karen, please look up Bridges to Access program on google. It is the drug manufacturer's (of Mepron) program to help people afford Mepron.

I was able to get on this program. It is the ONLY reason I was able to start the Mepron my doc prescribed for me 2.5 wks ago. The clerk that pulled my meds from the back (I, too, had to wait for them to order more stock...I don't think many places keep it in stock at all) said that it was "over 3,000 dollars" for my 60 day supply.

Because I was eligible for the Bridges to Access program, I only had to pay $10 (I had a voucher from the program I had to show). There is no way I can afford almost $1700 a month for ALL my meds and dr visits combined, certainly not for just 1 of many!

Chris in TX
Congenital Lymie. Dx'ed summer of '08 with Lyme, Babesiosis, Erchliciosis, and Bartonellosis. Seriously ill for over a year before that. Symptoms of some sort since childhood.

Posted by Karen Mc (Member # 23354) on :

Thank you everyone for the words of encouragement and I will check into that program as well.

Blessings,

Karen (:
P.S. I am feeling better emotionally just itching to death [Smile]