My husband thinks it is a majic wand and 6 months of antibiotics and I will be well and all this will be gone and I will be back to work fulltime as an ultrasound technologist "pulling my share".

Meanwhile I just went and am going through worst herx yet on clinda IV and mepron and rocephlin--literally could not get out of bed except when necessary last week.

It is hard. I would love for someone to cook for me, change my sheets, stay while I take a shower in case I fall, spent a lot of time holding on to walls last week, or bring me my things once in a while.

Today my hubby does not feel well and wonders why I am not in there falling all over him like usual-I am pissed and I am tired and sick myself.

Went to, or should I say dragged myself to a support meeting the other night and three ladies had their husband's there--all newly diagnosed with cfids or fibro which I have had going on 15 years or so we thought--only to find out lyme was the culprit 3 months ago--it hurt to see them taken care of--it is all so new to them.

Around here it is old hat--"oh, mom is sick again, what is new?" --and the attitudes flare about what I cannot do for them.

What they do not realize, no matter what I say that this herxing on IV antibiotics and running them myself and fending for myself is very difficult. Lyme4 is very different once treated it becomes a different animal.

I have the lyme rage and screaming meanies--so I guess I cannot blame them--but I am so hurt deep down inside. I would rather amputate my right arm than have lyme or be going through the treatment for it right now. I WOULD TAKE MY WORST DAY WITH FIBRO BACK IN A HEART BEAT IF I COULD AND LIVE IT DAY AFTER DAY LIKE IN GROUDHOG DAY THE MOVIE IF I COULD, BUT NO TURNING BACK NOW--it is lyme and it was causing me to loose my mind and my life so I have to be treated.

I cry a lot each and every day. I hurt a lot each and every day emotionally and physically and they do not want to hear it anymore. So, I wait until I am by myself and cry in silence.

it is hard to live in silence. I have a therapist and am trying to reach out at support groups-no lyme ones here in Charlotte--just CFIDS Fibro--I feel like an inigma--like I do not belong at home, there or anywhere--here maybe in cyber space-but no where else. At the meetings they are just facinated with my picc line and want to hear about the treatment etc.

I guess that is the way it has to be, huh? Open to any suggestions? Yes I am depressed-as a matter of fact since on abx for lyme was diagnosed bi polar-think I am hypo manic right now if I want to use the right "jargan." I have a meeting with therapist tommorrow and am not suicidal or anythig like that--

just wonder how you all get through the herx without it bothering your kids and family--I cannot grin and bare it all the time--sometimes I have to just lay down and cry and sleep it off.

Cathy

I am so sorry you are feeling so bad. I can't even being to imagine. My son Dominic who is 7 was dx last May with Lyme.

We recently found out that my youngest who is 2 has it and that I might of passed it to all 3 of my children.

I have had some of my family say they are tired of hearing about lyme and now it will never just go away.

One of my sisters made a big scene for Easter that she is tired of seeing me giving Dominic his abx and hearing about blood test, ect.

I told her to not let the door hit her on the *** when she walked out. Lyme is in our family and will be in our family and I am shouting it from the roof tops to hopefully help someone else.

It sound like you are the rock in your family (like most moms) and you need a shoulder yourself.

Hopefully you will get to start feeling better soon.

Until then this board is a wonderful place to vent and share.

Just wanted to say that I relate.

I'm so sorry for you. You know I can relate.

I had a pretty major seizure on x-mas eve at the 'family' gathering and found out later how funny i looked. And nobody helped, they kept eating, drinking and talking because Obviously I did it for attention.

I know that doesn't solve the problem, but it sure can help you feel a little better - at least for a while.

Call your LLMD & explain in detail how you & your daughter are feeling.
Some people need special meds to help deal with all this when it's so overwhelming. Then, as you improve, you can ease off them.

Do you see Dr J, about 15 minutes north of Charlotte?

Wish he could prescribe some "pills of understanding" for your family.

Just keep telling them -
we're in this together, & it's gonna be a long haul....don't expect instant results.

Take care of yourself.
Hope you'll see some improvement soon.

My sister tells me that I expect the world to end because I'm sick for the first time in my life. I've only talked to her 2 or 3 times about my health in the past year. All I want to do is explain to my family what I have. They don't even know all my symptoms or how much pain I am in. My sister considers herself more sick than I because she has asthma and has to use an inhaler a few times a year.

My father tells me it's all in my head, I need a job, I need to lose weight, I need to exercise, I need to go on the Atkins diet and drink a glass of wine a day and I will be fine. He says I sit around the house too much and have nothing to do but think about my health. Obviously, he has no idea how much work a 21 month old boy is and how many errands I do considering my husband does nothing at home but mow the lawn.

My father and my sister have a 'god' complex.

And talking about my health is way too boring for my husband.

So, yes, I have an idea about what you are going through.

Unfortunately, I just keep silent on what I'm going through and how much pain I am in, etc. It's easier than fighting and arguing. I tend to ignore most of the stuff I'm going through and that will probably come back and bite me on my butt. I even have started telling my doctors less because I feel that they think I'm just complaining.

I could have almost written your post. With the exception of the children.

I also cry EVERY day. I am so upset about all of this.

This past year i had 4 surgeries for endometriosis, and i told my husband just a couple of days ago, i would rather have endo again than deal with all of this.

My husband asks how i am, and i usually say, i have a fever. He says, you ALWAYS have a fever so whats new. It really hurts. Whenever he gets a little sinus cold, its the end of the world and he is so sick. I try to tell him imagine feeling like that day after day, month after month.

At least when i had the endo, i could eat or drink what i wanted. It would comfort my pain to at least have some wine or pizza.

With LD and the treatment, that is gone too.

Going to dinner with friends? Ha!! I hate it now. The special request to the waiter how i need a plain salad, plain grilled tuna and steamed veggies (oh but no potato). They think im doing a stupid Atkins diet. Yeah, right. Please pass me the water while eveyone else is drinking wine, it is so depressing.

I gave away all my diet coke yesterday. I know that seems like such a small thing, but i feel LD has taken almost everything i enjoy.

Im still fighting a yeast infection. I just dont know what to do about anymore. I started diflucan AGAIN, but it is hardly working.

I went to my GYN, he checked me for yeast. Of course, he didnt find any. Well something is really wrong i know that. I always feel like i have to defend myself these days.

Im waiting a week start my new Mepron/Zithromax to try to let my body rest before starting again. So far, i have only been on doxy for one month. Not very long.

I just wanted to share how i think many of us feel. Yes, i do cry in silence a lot.

Jordan

Then went on to have c-spine fushion 6 months later and then ACL reconstruction with menicus repair on my left knee due to work injury(of course they never owned it)--so you see I have either been recovering from surgery or been sick with fibro, sinus infections, interstitial cystitis and many UTI's, depression and anziety, estreme fatigue etc etc for years.

Had my left tube and ovary out in ultrasound school--you would think I would listen to the god's above when school was so tough on me. I lost the first job out of school because after two surgeries they were not going to give me another medical leave---they used the fact that I had too many absenses to fire me.

I spent the better part of the last 4 years recovering from surgeries and fibro flares from haties--then moved to Charlotte where I did manage to work 30 hrs a week in a busy OB/GYN office--it was there I hit the wall-was diagnosed with IC and pelvic florr dysfunction, manic depression just to name a few things and through a fluke got a referal to DR. J from a pain doc who was the third who refused to treat me or perscribe any meds.

It was then I was tested for lyme and was positive and through my history and positive PCR began IV therapy closr to 2 months ago.

My family is holding together by a string--it sucks to say this but I need my husbands insurance therefore I am stuck. I am contemplating separating and making him keep insurance on me as part of the deal. It is just hard to think of moving with no income and not much money saved. WE already cashed out all my 401 K's etc when out of work for over a year with now income from my knee surgery. Fought UNIM Provident until I was blue in the face and had an attorney drop the ball so I never saw but 4 weeks of pay. They still owe me over 14,000.00 in back pay which I will never see for my knee injury which kept me out of work a little over a year.

What has got me so upset today is I inherited some money from my uncles's passing and intended on using that money to pay off some of the credit cards that have not been paid in over a year-they are making offers of 30-40 cents on the dollar to settle. My husband was taking care of the bills and spent over 3,000.00 of the money on BS and his answer was that I pissed his bonus check when we moved in here--hello I bought furniture, carpets and drapes etc--things that are tangitable.

Anyway went to bank today and opened savings in my name only and took out all but a few hundred and put in my name only--I have no other resources. NONE--no family was only child, parents long gone since I was 17 and no other relatives. So unless SSDI approves my case the first time LOL--yeah right I am up sh**s crek without a paddle.

Then there is the kids. Right now they would be better off with him, but summer is here and he works a lot to make up for my losing over 50,000.00 ayear as a sonographer, which may be permanent due to the fact I have until DeC of this year to take my boards or I cannot get certified without going to an accredited school which is 2 more years. I have my time put in I just cannot study right now and taking those tests are hard in the best of situations and I have been out of school since 1999--------------so to top it off my career may be gone even at working part time if I do not get registered.

It is all so depressing. I have attacks of what I call lyme rage all the time. I am on mood stabilizers and antipsychotic drugs already, along with antianxiety medicine--there is not much more I can do but ride it out.

Unfortunately, I may have to do this from another venue than my home after today---huge blow-up--they are all so sick of me and my lyme and anything that has to do with it. MY husband just wants his wife back and my kids want their mom--all the explaining in the world won't fill that order.

I am sorry!! I know there have been more days than not when you feel ALL ALONE in this battle. For I think I am already getting on some folks nerves......just want everyone to know what is going on.

SO FRUSTERATING.....people think you are crazy and they are tired of you being tired and in pain 80-95% of the time.

I am depressed about it already! I think I am having stronger symptoms just thinking of what I am about to be put up against.

"compasion burnout"---------you said it and it makes sense, griswoldgirl.

Amanda

my mother even laught at me two yrs ago at christmas and said now you no what it feels like to be sick.

except her ilness was alchol and drugs/oh well

anyway

i cry everyday guilty., about how i feel everyday is consumming me.

i have three kids and i feel i am never there for them..

my husband yells at me because he says im the reason the whole faimly is stressed,

i am alone most all the time and if i talk about this ///xxxll illness i get funny looks. or usually im talking to the back of someones neck because they are walking away.

i was even at hospitial today giving normal blood for test that i do everyweek from the same nurse the last seven months.

and she said to me because i am not working and i have nothing to do that,,,,

my house must be the cleanest in the world..

well that just broke me,i left there crying. i wish i had the energy to keep a house like i use too//

i bet they /she would have never said that to a woman who has half bald and is being treated for cancer, with picc line//

but lyme thats just that tick thing. thats what they call it..

and im not nocking cancer cause i had it,

cervical,8 yrs ago and no one ever said any such words to me it was always

what can i do to help and are you ok

//now it is---- you look soooo goood you cant be that sick.

sorry so long just not tired. but real sad.

try to get through this just by posting to people who really understand your sadness

hope you see the sun shine soon

debbie frome warwick

------------------
lyme diease coming to a family near you;;

staring the infamous spirochete;;

with special apperances by
coinfections.

The gun never left my pocket nor the bullets, too chicken and figured I do have something to offer. A woman newly diagnosed with fibro who is 71 called me today seeking advice and I was able to help her, so I guess I am good for something othet than driving my family crazy.

the bad part is the case for the gun was in my van and i left the bag open and my son who is 10 went to get some soda out of the van and noticed the case open and the gun gone----------so the whole family lost it.

I just want the hurt to stop, not willing to shoot myself over it though-figured that one out. I just wish it was my secret and no one found out--now they are all watching me like a hock--I was going to go to Greensboro and hang with a friend until our appointments with Dr J on thursday but husband and daughter took my keys and would not let me drive. so much for that plan.

I just sometimes feel like a caged animal. No one to really talk to about what I am going through. This herxing is bringing up old stuff I went through as a child and abandonment issues etc. I am angry all the time especially after mepron--that stuff makes me a raving loone.

One thing they (family) bring up is I do not express what I need. I don't because I do not know myself. I just feel as if I am loosing my mind. I want comfort and want them to see beyond the ranting and rafing and see ME and hug me anyway and realize it is the meds making me this way.

I will tell Dr. J's PA when I see her on thursday what I have been going through and after the gun incident will call my shrink in the morning--I just cannot see changing the dose on my meds everytime I change antibiotics, this is nuts.

My lyme is obviously more neuropsychological in nature from the way I am reacting from the meds. It is a trip I do not care to take again and would really like to hear form somebody who has been through this and made it to the other side--what ever that is.

Amanda-my psychologist has a web site wwww.drsallyduffy.com that goes into compasion fatigue a lot and it explains a lot about the way people react to you. Especially when you have been ill for so long looking for answers. I was so glad at first when I found out it was lyme because I thought at least this can be treated and thought there was a cure. The more I read and the more stories I hear the more I realize after having it for 15+ years my chance for full recovery is not as good as I thought--at this point I will take what I can get though.
Thanks all for being here for me--not sure what I would do without you all

DELT/1--know what you mean--I, too am the whole problem in my family as well according to him. He told me he does not eve want look at me this afternoon-hense the gun incident so I am out in the front room on the fouton tonight.

sorry so long--got to go sleepy meds kicking in and hav to sleep-thanks again all good night

Im sending you a huge hug. I wish there was something i could write that could comfort you.

Im starting the Mepron within days and im sure am scared of what it might do.

You are a VERY IMPORTANT person. Dont ever forget that. Like you said, you helped that older lady. You probably, made her day.

We are all here for you. Vent away and get it out.

((((((((Sending another huge hug))))))))))

Jordan