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    Old 03-30-2006, 05:23 AM   #1
    Roman77
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    Exclamation marsha/cind68/others?? bad bad bad heparin

    ok i feel like i am dying. i started my heparin shots on sunday just like i talked about in my other post about seeing dr. crist and my treatment changes. but now over the past few days i have gradually gotten worse and worse. i feel like i am herxing, but i am not on any antis at all while dooing this treatment. strangely it almost feels like i haven't had lyme treatment in a year or not at all. feel like i have taken about 20 steps backwards. i anc't even epxlain it other than to say that it scares me and i want it gone. so waht i am wondering is did this happyen to you two when you were on this treatment? the worse of it started yesterday when the fatigue hit me like a truck, was exhausted after taking a little normal bath and slept for 3 hours after it. i haven't had to do that for about 4 months. then everyhting just got wosre by expontntials. seems like all my symptoms are bakc in force and making up for lost time! i could cry. my head feels like it will crack open, my vision is even more terrible than ever, and i couldn't even remember what color something that was orange was yesterdy!!! i had to ask my roommate what color it was!!! scary. and my pain level is out the window. pleae hepl gusy. i am trying to hold out hope this is normal.

    am calling dr c this momrning, hope he knows what's going on.

    shanna
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    Last edited by Roman77; 03-30-2006 at 05:26 AM.

     
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    Old 03-30-2006, 05:53 AM   #2
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    Re: marsha/cind68/others?? bad bad bad heparin

    hi shanna, so sorry you are feeling like that!!! i am tooo, i am feling the day, like i have taken 10 steps backwards in the last 10 days.... sometomes i am wondering if i am dying anmd wake up like this morning with lots of axiety... feel so tired...i will do a bone marrow to see my brucellosis, doctor want to do it..i have so much nauisea, heartbeats, low grade fevers...... anxiety......pains.. tremors but like electricity in the body that is not going away.. vertigo, sinusitis, i though i was improving but dont think sooo...we just have to wait i guess, have faith... keep believing............
    good luck , a big hug and let us know wht doctor c said

     
    Old 03-30-2006, 06:47 AM   #3
    janetclarkson
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    Re: marsha/cind68/others?? bad bad bad heparin

    Hi Shanna.

    So very sorry that you are feeling so bad. Unfortunately it is the nature of the disease. But even when you know that, it is still so depressing! Each time it happens it brings you down so low that you think that you are never going to get up again.

    But you will.

    Its a bit like climbing up an escalator that is going down! It will take time, but you will get there.

    Keep fighting!

    Janet

     
    Old 03-30-2006, 07:42 AM   #4
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    Re: marsha/cind68/others?? bad bad bad heparin

    Hi Shanna,

    I thought that maybe this was going to be okay for you because you were such a trooper about the first couple of shots. I'm not sure I could do it to be honest with you.

    I am wondering if the heparin is thinning your blood and therefore is "allowing" the die off to finally start to leave your system instead of just circulating. Somebody a long time ago said they had read that the live bacteria feeds off the dead and if that is the case and you are finally expelling some of this stuff then you are taking away their food source. It's kind of like a baby and they are going to let you know they are unhappy anyway they can. Maybe after a few days this will taper off. I hope Cind can come on and tell you this is normal and how long it takes to feel a little better.

    Hang in there kid we will all try to pray you through this.

    Maureen

    PS I am convinced getting this out of your system can upset the apple cart as much as the live stuff. A couple of nights ago I had what I thought was a horrible UTI. Just about in tears. Of course it happened around 9:00PM so my pharmacy wasn't open. I had 1 bactrim from a long time ago and I took 1/2 and swallowed cranberry juice and cranberry capsules. The next day it was pretty good just a little problem. The thing was that I was peeing like crazy not dribbling for about 6 hours as though the urine needed out so I question if it was a UTI. I had started taking 1/2 beta sitosterol (like your questran) a few days before and now I am wondering if it was nothing more than die-off or even live bacteria passing thru binded to the beta sitosterol and it upset the tract. Good sign but I wish I knew for sure. This may be a question for Mary at Dr. Crist's. Problem is you never know who you will get. I trust her so much. The funny thing is that a few weeks ago after labs they called and told me I had a UTI and I didn't even know it which is weird but took the meds and my urine is real clear. For a few days after this last problem though my urine looked as though it had little dots of white (eggs ?) and almost an oily residue in it so it may have been die-off. I will be so glad when I can get up off the toliet and just flush and not have tolook at what's there.

     
    Old 03-30-2006, 08:45 PM   #5
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    Re: marsha/cind68/others?? bad bad bad heparin

    Shanna
    Hope things are better this evening. I'm still giving myself shots, but it is getting harder and harder to do. I have had more fatigue but didn't connect. Have mentioned to Larry my horrible headaches are back. I have had brain to mouth problems a few times. These are probably connected to the shots. I just figured it was because I'm off treatment for a few weeks. But you might be on to something. Let me know what Dr says. Prayers....Marsha

     
    Old 03-31-2006, 07:57 AM   #6
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    Re: marsha/cind68/others?? bad bad bad heparin

    thanks guys...am feeling a "little" bit more alive today. tlaked to dr c yesterday morning and yes i am definitely herxing from the heparin shots. he said that it's a anti viral and an anti bacterial so it can to cause die off, plus like you said maureen as it thins the blood out it can release the trapped crud/previous die off/etc so that comes in to play as well. so that explains why i felt like i was herxing. he said most times he doesn't generally see this often to this degree that i'm in, but givne my past history he's not surprised. gald to know i'm not craszzy. so he told me to go off the shots until i feel strong enough to start them up again as being on it will herxing liike that will olnly slow down my progress. but i am now sooooo frustrated. thought maybe i might have a chance to do some therpay that does not have to be pulsed and i could make up some ground. but here i go again on the herxing road again. when will it ever end. sigh.

    brid sorry to hear about yoru rough days. they make it hard to look forward to a new day, but hopefully soon your treatemtnet will satart helping you see small singns of improvement.

    marsha maybe you are herxing too, from the sounds of it. my bad bad montsetrer headahces are back too as well as the brain stuff. i can't believe how much my brain has been "off" this past few days, hae forgotten basic words like orange, cable, knife, aartichoke, and many others. kplus have just been out of it. yesterday to get my mind of the pain i walked the hallway in my apartemtn to get the mail...i keept forgetting i'd checked it so i made that walk 3 times! plus i can't begin to tell you hom many times i've been stopped mid sentence in talking b/c i simply have forgoteen the words i am looking for or how to describe something or i am just lost at how to finish my thought ior plaininly what i was even talking about. its scary what we deal with. i hope your brain stuff doesn't keep getting worse. keep me posted on how your shots are going.

    take care everyone/...
    shanna
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    Old 03-31-2006, 06:28 PM   #7
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    Re: marsha/cind68/others?? bad bad bad heparin

    Shanna
    Things are a little better. "LITTLE".... I pray you will say the same in a day or so. Hang in there. We will get through this.

    BCBS NC just layed a big stressor on me. I will post it on new thread.

    Where does it end???????

    Prayers.....Marsha

    Last edited by Pearlscale; 03-31-2006 at 06:29 PM.

     
    Old 04-03-2006, 06:29 PM   #8
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    Re: marsha/cind68/others?? bad bad bad heparin

    hi agin....i have to say i am getting scared. i just don't jknw what i can do about any of this. so disheartend. i wasd off of the shots for 3 days, was feeling a bit better and up a little for the day. so thought maybe the worst of the hrex was behind me so i started them up again yesterday morning. here it is 4 shots later, and i am in the same boat again. aarrrrgh. i feel awful, my jaw wants to fall off, my right leg is numb and ever so cold and tingly. everythign that i have daily ti like 20 times worse. you are right marsha,..whaere tdoes it end. am going to call dr c tomororw and see if he recommends pulsing my shots. maybe only one a day. i am so down. every time i try to fight to gt beteer my body rebels and says no no no. waht to do what to do. am hanging in here, but mahn it is hard.

    cindy did you have this much trouble?

    ticker do you have any thoughts? anyone? i'll take anything right about now.

    marsah...posted on your thread, but am off to go lay down after this am wiped but am thinking of you. wish i had some idea of how to make them change ythey minds and give the iv to you some more. hange in there firnend.

    shanna
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    Last edited by Roman77; 04-03-2006 at 06:30 PM.

     
    Old 04-03-2006, 07:46 PM   #9
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    Re: marsha/cind68/others?? bad bad bad heparin

    Shanna
    wish i had the power to make you better. prayers and hugs. my day isnt to good either. e-mailed my dr today. my ears feel like lyme critters are digging their way out. baddddd. lyme headache. not sure where i stand with insurance. but don't matter. we do what we have to do. and right now it is to get it out of my head. havnt had it this bad in months.

    dont know what to say about the shots. maybe lower the dosage. (empty half of the dose in trash can before you inject.) once a day. hope your dr has answer.

    are they doing a pro time on you. that is to check to see how thin the blood is. maybe you dont need to higher dose to keep your blood thin. just a thought. i do this once a week.

    prayers...marsha

    Last edited by Pearlscale; 04-03-2006 at 07:50 PM.

     
    Old 04-04-2006, 07:27 AM   #10
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    Re: marsha/cind68/others?? bad bad bad heparin

    ih masrsha. yeah i go in every week for a blood panel and stuff. so they are keping an eye on it closely. am waitng to hear back from dr c about lwering the dose or spacing it out mroe. don't know what he'll do but hope it will solve this problem. i can't do this anymore than i can handle the herxes form my antibiotics. sigh. anyway i hoep today is not as bad for you with the headache and ears, this is so not fun but hopefuley there will be a break in our near furture.

    shanna
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    Old 04-04-2006, 11:38 AM   #11
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    Re: marsha/cind68/others?? bad bad bad heparin

    Got maybe 20 minutes sleep last night. Larry was coughing so much he popped an arterie. bleed off and on all night. got in to see the ear nose and throat that did his nose surgery and it started bleeding like crazy. they had to cauterize with no numbing and still couldnt get the bleeding stopped. had to pack the inside of his nose. he goes back friday and they told him to be prepared for the possibity of surgery to stop it. NO STRESS HERE. hope your day is better. i think that the d.... is working hard, trying to get to me now through my family. prayers...marsha

    Last edited by Pearlscale; 04-04-2006 at 11:39 AM.

     
    Old 04-04-2006, 01:25 PM   #12
    Roman77
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    Re: marsha/cind68/others?? bad bad bad heparin

    wow marsha. i am sorry to hear how bad it is for your hubby. i can relate to the cauterizing and such, when i had my tonsils out a few years ago the same thing happend to me. i woke up from a nap drwoning in my own blood. had to go by ambulance to the er and to emergency surgery. before they could bring me up though they had to try to stop it and they didn't have time to get meds in for pain so they just wnet in with their little torch and had fun. while i went away to some other place to escape. it was a nightmare. bled so much blood before they got me to the O.R. that i could have filled the large KFC chicken bucket up and more! very scary. hope he oesn't have to go through the surgery again. very sstresful for you both i'm sure. your'e i my thoughts too.

    shanna
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