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Old 10-14-2007, 06:04 AM   #1
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Capn MicB...

Hi Mickie....are you lost out there? How are you? do you still have the picc line in? Are you still feeling well since you last posted?

Imagine the house is a little quieter with the kids back in school.

Sending you some Hugs....

Pop in okay...just to say hi ....

buh bye for now...


 
Old 10-14-2007, 10:42 PM   #2
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Re: Capn MicB...

Ahoy joyjoy. You're a sweetie pie for asking about me.

I've been lurking; starting posts but I get too upset and tuckered out to finish. I've started replies to posts (like yours about the Babesia) but then I give up before I click submit. My apologies for not responding to your post by the way.

Short answer: It's been a slow motion train wreck around here. I'm hanging in there.

Long answer: Grab one (or all) of your 4-legged babies, a cup of tea and I'll spill my guts.

The hair event:
My hair is blonde, baby fine and curly. If I put some froo-froo hair stuff in it and scrunch like heck, it didn't look too bad. When I got sick it fell out in clumps and my scalp was visible but I had worse problems so I ignored it.

During treatment, it came back nice and thick but I couldn't take care of it and over the past few years it knotted into a h-u-g-e ball hanging off the back of my head.

I finally made an appointment and after $300 and 5 hours of tugging and pulling (talk about neck and back pain!) and cutting out the worst of it, a few angels at a salon near the beach took care of it. During those hours my daughter got bored so I told her to grab a few bucks from my purse and go get a soda or an ice cream up on the boardwalk (a block away).

I felt better having that heavy knot of matted off my head but all I wanted to do was go home and put a heating pad on my neck. I walked outside and found my truck was not where I parked it. It turns out my daughter took my truck and went JOYRIDING with NO permit, NO license, NO driving lessons, no nothing. On top of it, she locked my keys inside! I was livid. I was so upset! All I could do was stand there and start to cry.

I used to be such an in-charge type of person. I never turned to jelly in any situation. I was embarrassed over how I just stood there like a bumbling fool.

What if she had hurt someone? What if she had hit someone or something? I may have lost my house. How on earth could she have risked that? Let alone she risked my only mode of transportation!

I had to walk to find a gas station that could help us break in to get the keys so I could get home. I have no clue where my spares are and no one to call for help anyway.

It was a beautiful day and the beach & boardwalk were packed. I wasn't feeling well, I was swerving all over the place to find a gas station, and of course folks were staring at me. God forbid anyone asks if I need help. I had to walk past all the places I used to hang out, eat dinner, take my kids, and the places I used to dance. I felt like a jerk walking and swerving which made me cry which made ppl stare at me even more and made me cry more. I was terrified of being seen by someone I used to know.

Eventually, we got the truck opened and got home. Of course, my daughter was grounded and my poor body was even more sore than before due to all the walking.

The criminal event:
Just TWO DAYS after the hair event, I'm sitting in bed working and the bell rings so I answer the door. There's a police officer at my door and a patrol car in my driveway with my daughter in the backseat! SHE'S BEEN ARRESTED FOR SHOPLIFTING!!!

WHAT THE HECK?!?!? I was in shock. First of all she was grounded from joyriding, so she was to come home and go straight to her room. Apparently she came home, dropped her books in the garage and took off on her bike, went to a store with a friend and decided to STEAL???

I've been divorced 12 years and have always put our family unit above all else. I never dragged strange men in and out of my kids lives. We never had much money so they're not spoiled by any means. I am always honest with them. I never bad mouth their dad, I never put them in the middle of any contention with him - never, not even once. I don't tolerate bad language, bad grades, disrespect or rudeness. I'm a tough, strict parent. They have to tell me where they are, who they're with, etc.

Most of their friends prefer to hang out here. It can be trying to have a house full of teenagers, but I kinda like it. Their friends come over all the time. They don't even knock anymore - they walk in, say hello to me, ask how I'm doing, ask if there's anything they can do for me and just hang out here. I like it because I know my kids' friends and I know what they're up to.

I sacrificed years to send them to Catholic school so they had moral reinforcement. They have great role models. So why didn't she listen to the gaurdian angel on her shoulder??

How could she bring shame to this family by SHOPLIFTING?? What compelled her to pull this kind of crap?!?

The job event:
I found out 4 hours post facto that I am on unpaid leave until sometime in November. I'm a contractor at work but no one bothered to tell my contract house until after I had been working half a day for free. So on top of all else, I have no money coming in for a while. I don't feel well enough to do much more than sit in bed and spend time on my laptop, usually working. Now that I have no work to do -- what do I do? I can't paint, spackle, plant shrubs or mow my lawn. I feel useless.

The rescue event:
My daughter's best friend has been beaten by her mom for a few years. I even witnessed it once myself. I couldn't sit by in my warm safe home and know that this poor kid was in danger so I called child protective services.

Long story short, she's living with us now, rooming with my daughter. The bedroom is huge so they have enough space and I'll make sure she does homework and gets into college, etc.

I'm glad it worked out this way. My mom had a different but similiar experience as a kid and I always had it in the back of my mind that should I ever be in a position to observe a kid in need, I would act and do something. Things sure could have gone a lot smoother with this particular situation.

This kid has a boyfriend whose parents were aware of the abuse and did nothing. So I pick her up tonight from the shelter house and bring her home where I had presents and balloons and then she tells me how her boyfriends' parents are taking her out to a fancy restaurant tomorrow to celebrate her freedom from her abuser.

I was really taken aback. They did nothing to help this kid (not even a phone call to any authorities), and here I am with Lyme, making room in my house for her to live here safely and it didn't occur to them to invite me to the celebration? Selfish jerks.

I hope I don't sound like a jerk also, but they are pretty well off and they are aware of my illness and that I'm a single parent, etc. I know them as aquaintences and it just hurt my feelings that after this whole horrid affair, they didn't think to include me.

The ex event:
My ex knows I am sick yet he picked up my kids Friday night and led me to believe they were going out to dinner. He calls me later and says that he brought my kids to his house and that I'll have to come get them on Sunday, 170 miles round trip. I can't stand it when he pulls this crap. He knows I'm sick and I can't handle long drives like that. He is such a jerk to pull this crap.

My social isolation has been painfully present lately. God how I wish I had a big, tall strong husband who would not let people treat me this way. He would stick up for me. Heck, I'd even settle for a male friend who would just stand in my doorway and stare at my ex.

So, in conclusion, I've been through the ringer lately. I have enough money in the bank to live for a couple of months. Thank God my insurance company is still paying for my I.V, drugs. I'm keeping my cool but, God Almighty, it sure would feel good to have some good luck for a change.

I try to remind myself that I am lucky - I do have a job to go back to, my kids don't have Lyme and with God's grace they'll go to college. I am able to do the dishes and grocery shop. I can walk without a wheelchair. I can type. I can still behave compassionately.

But, jeez louise joyjoy, it sure would be great to catch a break.

I'll try to post/reply more but no promises. I often feel w/r/t Lyme that this is as good I'm going to get.

The oscillopsia affects my vision so bad that I probably shouldn't be driving.

It is so sad for me to think that after 3 years and thousands of dollars, that this may be as good as I'm going to get.

Apologies if I was a downer - that's the way it goes sometimes with Lyme recovery.

How are you? Have you been tested yet for co-infections?

Love and peace and health to you,
Cap'n McBlues

Last edited by 6Blues; 10-15-2007 at 12:08 AM.

 
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Old 10-15-2007, 07:01 AM   #3
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Re: Capn MicB...

Oh my gosh Mickie I am glad I asked how you are...Talk about all the forces of the universe trying to get you in a up roar!!! DANG!! If I remember right your daughter is in her teen years...Oh my do I remember those days being a teen... She'll out grow it Mickie. Sounds like you have done a great job with both of the youngins. I can rermeber going to school right down the road from a Catholic school. And hey they were just as bad as us hiding under the train tressels smoking and making out...Just keep your Love around her she'll be okay. Sounds like she is testing the waters some.

I can't imagine being as sick as you are and having to walk for miles dealing with keys locked in the car...If that were my kid she'd be grounded until she was 21!!! lol....

Just hang on it will be a bumpy ride for a while. My hat is off to you for taking in that young girl! Ahhhhh you wouldn't want to be going out anyways with those snottie people. Your doing the hardest part of this whole thing. Just don't forget to take care of YOU!

So how much longer will Doc keep you on the IV? I am so thrilled that the insurance company is still paying for it! Has she changed you regimn any? Added any new med's? When I had my second picc in it wasn't too long after I had my first one pulled. The doctor put me on Amoxicillin and something else...shoot I can't remember the other one...So have you two talked about changing what you are on and try something else while you have the picc in?

Yes I had been tested a few times for the co-infections. Twice through Igenex. They would come out pending or neg. So I was never treated. Sides I was such a mess when I finaly found the doctor to treat me that bless his heart he truly didn't know where to start....And I hadn't heard of a Lyme Literate Doctor at that time. BUT I had the dang symptoms of Bartonella and the marks and the Symptoms of Babeisia. I am alot better...but it is just this weird crap that goes on with my lungs...SO I read on the computer yesterday that these protozoas can live in ones body for 30 years or more until they flare up...SO I think I found my answer... ..

I have a phone appt on the 23rd so will ask the doc to put me on ummm I forgot the name of the med. The one for Babeisa and see if it helps. See he is treating me for the Chlamydia Pnumoiniae bacteria and the Epstein Barr Virus and Cytomeglovirus...Tell you when our bodies get invaded it sure can take eons to get things back in tolerable mode....ugh...

And like you I just try and think of the plus's in my life. I have days where my muscles still to this day are like mash potatoes...it all has something to do with what ever is in/on my head ...Full Moon really is a hard one for me.

Anyway I have recently found out there are some hot springs around here. I am going to go try them this week and see if they help any. Think I could do without people walking around naked. I'll just keep my eyes closed...

I also would like to try accunpunture on my head. See if I can get someone to look outside that box. And see if they put the needles in my temple area and where the little aleins live if it could help open things up. I do have a fear though that "if" that is bacteria (s), virus (s) and such that it will make them go haywire...phew...never ending uh? haha....

Yesterday my sweetie and I went jeeping up in the mountains. Took a road we haven't been on and wound up at the top ...we were 7,500 ft in the air. Got out of the jeep and finshed walking to the top! We were as hgih as the birds...You could see a hundred miles all around. And in my head I was thinking oh my gosh I could not have done this a few years back. And I had better do this as often as I can cause in a few more years because of age I will not beable to do that....That is such a wonderful feeling to be up so high..actually it does bother my head some so I have to sit...I know what a whimp! That was my adventure yesterday...

Well best get going so I can feed my 4 legged kids. I have started doggie sitting and had my first clent. yeah I made a extra 100 dollars. I had him for a couple weeks and the little guy will be back friday for a couple of days. yahoooooo! So tyring to keep busy and keeping my heart happy.

You hang in there Mickie. Like I have always said to you and other Parents that have to deal with a chronic illness and children. You are AWESOME! Honestly you have more inner strength than what you give yourself credit for. My heart is filled for knowing people like you!!!!

Keep in touch okay ...You do sound alot better than you did a few months back. One thing to remember is you are truly a wonderful person! Do every little thing you can to keep the laughter and humor going in your heart....

Hugs to you!


 
Old 10-15-2007, 08:23 PM   #4
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Re: Capn MicB...

Joyjoy, that's total absolute awesome news on your jeeping to the top of that mountain with your sweetie.

I can imagine how beautiful you must have looked, standing on the top, the fresh air in your face, the sun on your face, the breeze in your hair and buddy with you, staring out over hundreds of miles of rocks and land and trees. Next time you go, please take a photo of yourself (if you can figure out to use the timer on a camera - I sure as heck can't!). Whenever you get blue, you can look at the photo and recall how alive you felt.

Those hot springs sound so relaxing. They may also have a detox affect on your body. Maybe you can stretch out and soak your scalp.

Try not to mind the nudies - I like your idea of wearing dark glasses . My neice was in europe and used a public bath in a small village. Turns out it was just unisex toilets set in a row, with no separators. She sure was surprised when a few men came in wearing nothin' but their hantzels & gretels.

I also tested negative at Igenex for all the co-infections. After a year of Lyme drugs and no improvement, my LLMD decided to try me on the meds for the co-infections just to see what happens.

I tried Malarone (for Babesia?) and nothing happened. I tried the Levaquin for Bartonella and I reacted strongly and I got so much better! I'm still on Levaquin and I hope it keeps working. So I at least had Bartonella with the Lyme.

I forget the other drugs for the other co-infections (Erlichiosis and Mycoplasma). I should mention it to my LLMD next time I see her and see if she can try an experiment with those drugs.

I still have my PICC line in. My LLMD said that after 4 1/2 months on Rocephin, something should have happened but nothing did. So she switched me to I.V. Zithromax 2 1/2 weeks ago.

I guess I'm reacting well to it but I think I lost track of my yardstick for measuring my good days versus when I feel bad. I am aware of days where I am really really bad and days when I feel really good, but those in between days all mush together.

Since starting the Zithro, I have isolated itchy red dots here and there, but more importantly, my original Lyme rash has come back. hooray. It means the drug is working. It's an oval of red itchy bumps on my right shin. I pray the bacteria are suffering.

You know, accupuncture may very well help those egg-y things on your head. Even if the needles stir up any buggers living there, better to suffer and just get it over with. I always liked the idealology of accupuncture and the body's chi. I wanted to get my chi read, but never got around to it.

I wonder if there are any naturopaths near you that are trained in traditional eastern medicine?

I had alternative therapy done at my LLMD's office. It was raindrop therapy which uses essential oils, applied in a specific order and in a specific manner. It didn't help me but it felt good when I was being massaged and I smelled great for days afterward. My daughter would walk up to me and stick her hand up my shirt just to rub the oil onto her fingers.

The other thing that happened during the raindrop therapy was that a small electric current was put through my body. I had one end clipped to each ear. That didn't help me either, but I'm wondering if it will help you?

When I was searching for a diagnosis, I used another alternative method called bio-energetic testing. It measures the current of a sick persons' body against a database of thousands of currents of sick ppl. Mine showed major amounts of Lyme.

It's not your run-of-the-mill testing procedure but I was so desperate to find answers I didn't care what anyone did to me.

Maybe you can check into the bio-energetic testing? It didn't cost that much and it may uncover some new information to help you, especially with your lung/breathing problem.

Geez that sounds scary. Do you keep track of when it happens? It's not food or allergen related, is it? Not an allergic reaction to anything? Any history of asthma?

Do you have the breathing trouble with any heart pounding?

How much longer do you think you'll be on the antivirals for the myco/EBV buggers you're fighting?

Let me know what happens on the 23rd when you have that phone call. Don't know what kind of prescription plan you have, but perhaps you can try the co-infection meds anyway and see what happens?

Thinking of you my friend,
Mickie

 
Old 10-16-2007, 07:22 AM   #5
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Re: Capn MicB...

Good Mornin MicB....

I made an appt with a accupunturist yesterday. It is on Nov. 2nd. I told her what I was going through...boy it sure is weird sounding when I say it out loud....hahaha...She wondered if maybe a blood clot is up there...I told her no I highly doubt that because of the way it acts...Now this is why I just don't like going to new people...ugh...But I am excited about trying it. I'll have to get out the old credit card dang! But I have to out weigh the pro's and con's.....to be honest I have a fear inside of wonder if it does stir them critters up and I go into that constant la-la land again...Damn that is the real scary part...We don't live in a town where the little doctors would understand if Jimmy had to take me to the ER...okay so vented that out and need to think positive...

Say isn't the drug planquil...forget how to spell it...But I see alot of people on it...Isn't that for Babesia?? Weren't you on that? With my breathing this has been going on for many years now...I always thought it was Lyme...and maybe it is...I am just reaching out there that maybe it is Babeisa (protozoa's) hanging in there. Beings I read that all these little critters can sit in ones body and not really cause a whole lot of problmes...The doctor and these other doctors one which had lyme himself and so did all of his family...Beings I couldn't get any positives they didn't really know how to treat me ....and I thinik I remember one of them saying the other things will settle down with Lyme treatment so maybe they did jsut that...just settleded down.

So I am just picking at straws...yep I smoked when I was ill.. so possibly this is from smoking...But I would think it would be constant if it were from that...yes I need to print out a calender and mark my days where I have problems...maybe I could find a pattern there like i did with my freak outs! haha...

Yes I will let you know what he says about putting me on that "P" medication...or what ever the one is for Babesia...

Zithromax is a good med too...I am on the oral...BUT doesn't your doc have you doing 2 med's through your picc line...YOu know a combo? Back when I had mine the doc had me doing 2 different types plus flagyl...maybe that is something to ask her if you could do a combo...Coctails anyone

Yes I was thinking also about the water in the hot springs having healing powers...Or atleast suck out the bad stuff...Just hope I don't get someone else's bad stuff...dang enough is enough already....lol....I most likely will do that in a couple of days....sounds inexpensive too...thik 5 dollars an hour...(I think)

I have had many things done to me altrerantively also...I "think" that bio machine is what one doctor used on me...to check for diseases then would tell me the reading and put me on tinctures...But one time the jerk thought he was being funny or thought It would make me quit smoking and told me I had CANCER!! Oh my gosh it flipped me out and I smoked even more...I told the doctor that was treating me for Lyme (cause he knew him) and he suggested I didn't go see him anymore...needless to say I didn't have cancer...at that time anyways...maybe that will be my next big adventure...ugh....

You know reading your post yesterday was great...I had pictured you as having brunette hair...I had the prettiest strawberry blonde hair/long when I first got bit...Within 6 months it turned to a drab mousey dull looking brown...weird..my eyebrows and the lower parts didn't change color though...So thank goodness for Clairol...haha...

And be glad your X is an X. What a poop head...

Well best close this post up now and get cleaning around here. Say do the bottoms of your feet still hurt? I went though so much pain too on the bottom of my feet. Looking at a massage book each area ment like...the eyes, or the lungs or the stomache...know what I mean...I don't have that anymore to where I step down and they were soooo sore...

By the way I am fortunate to have been on medicare/medical about 8 years ago now. So now they get to pay for the doctors screw ups..I can just about get any med I need. Like the valcyte..it is 2,400 dollars for ONE MONTHS SUPPLY....the pharmacy likes to remind me of that when I go in to pick it up...I don't know how loing I will be on the antiviral...like all the rest it takes a while to settle things down...

Mickie...you possibly feel the Rocephin didn't do you any good. But from remembering your post before the Rocephin you are alot better...Just keep fighting it...You definatley are not a quitter!

One more thing...I drove couple of hours last week and had lunch with my Mom....do you know that she is understanding now. And she gets tears in her eyes when we talk about it. Mom tells me that the radio now has alerts on Lyme disease in that county...So yep it has been a long struggle getting "anyone" in my family to understand..But just knowing my Mom does makes me feel somewhat better. I never wanted her to feel bad about doggin me ...I am just glad that she is learning...maybe this will happen with you too. Lyme and this struggle has made me a total differnt person in alot of ways..I am getting my caring back...And i now know when to get a bad person out of my life...I do not tolerate mean people anymore..and I know that no matter what happens I will over come it..I am at the age where I should have a retirement and all of that...which of course I don't. But you know no matter what I know God will be there with me...I failed few times..but think I am stronger now...amen sista...lol...

Okay Mickie keep your chin up..You still have ALOT of caring in you too. Or you wouldn't have opened your home to this young girl.

Many hugs to you...

Dance to the music and laugh!!!


 
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