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it's been awhile...wanted to say hello :)

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Old 08-20-2006, 07:32 PM   #1
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Join Date: Jun 2005
Location: MN
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Post it's been awhile...wanted to say hello :)

hi gang...

wow i've been absent from the group for a few months now. i think i really needed a break mentally, i really withdrew from everyone in my life as well. i know you all know what that's like. all of us long termers tend to go that way every once in awhile. but i hope i'm back for a bit, maybe on a lesser scale then i used to be when i first joined you all back in june 05.

anyway i've been reading some threads and see so many new faces, which makes me so sad. i wish you all weren't in our shoes and sick. but if wishes were money we'd all be rich right?. well i digress...i haven't seen much of some of the lymies i knew and posted with often. maybe i missed the posts or maybe they are struggling too. so i just wanted to say hi to ya'll, i miss ya, wish you well and hope i hear something about maureen and jules and some of the rest. i see marsha and mickie are still about, but i hope the rest of you are just lurking and focusing on healing yourselves. i know i needed the past few months of time to recharge.

so here's my news and current place in the lyme fight....(i apologize if most of you don't know me or my story but if you do a search for my name i'm sure my posts and story will come up, it's just too long to rehash) i'm still ill, getting worse again actually everyday. have been for the past month. i went to an emergency appt with dr c last month where he told me my 2 month long antibiotic drug holiday was over and they needed to put me back on iv's again. they thought to give my body a break to strengthen and fight what was left of the lyme on it's on. but it backfired and i backslid fast. now i am back to bedridden most days, and the same ole same ole. and to make matters worse over the past 4 weeks we have been battling with my insurance to get them to cover the iv's again. they didn't want to after having pulled my 3rd course of iv's back last fall. but after alot of battling it seems we have an agreement and i will have my PICC line put in on wednesday. i am happy but hesitant at the same time. i remember my last experiences with 3 months of iv's and how much i herxed and how weak i became, but i am praying that maybe my keet load is less and i will handle them better and maybe not have to pulse them so much.

wow this is becoming quite the post isn't it? well, like i said i've been gone.

on other fronts with the lyme, i;m still on the heparin at 11,000units twice a day for my hypercaogulation, and now on all kinds of hormone replacement programs since my levels are near to zero in all of them from the lyme (basically what women in menopause take, and i'm no where near there at 29). and taking thyroid meds to boost it up since i'm now have hypothyroidism from the lyme as well. and on top of that all i'm finally doing the Vit B12 shots some of you were talking about to help with the fatigue....the vote is still out on that whether it's helping, since things have been so bad over the time i've been on it. but hopefully i'll see a good difference. also i am now in physical therapy once a week for an hour. it's hard work, painful and it's not even more then really gentle stretchs and myofacial massage, but it's enough to put my body through the ringer. and i do the pt stuff at home 2 times a day when i can handle it, leaving me sore and exhausted. but i think in the long run it's going to help me get stronger and beat this sooner then if i din't work on all thes. also if any of you are looking for help with the chronic pain, i have something good to tell you all about. my phys therapsit gave me something called a TENS unit. its a portable zapper, with 2 small electrodes that you place on your body where you have the pain and zap it away. it doesn't make my pain go completely away, but it helps a lot and gets me through the though days when i want to give up. also per dr c i've been going to short massage therapy sessions. 20 minutes or less focused on one area of the body only. although i fee super sick and fatigued beyond belief afterwords, during it i feel so good. it hurts, but it's the good kind of hurt, like progess or healing is happening, if that makes any sense?? it's such getnle pressure that my massuse thinks she's barley touching me, but it's all i can stand. dr c thinks this will help with the pain long term and plus it gets some of the toxins moving so in small doses the body can proccess them out. ok enough of that i guess.

i really just wanted to drop in, catch you up and say i'm back. and hi to all the newbies i've never met yet. you are in a great place and i hope you guys stay for as long as you can, even when you get better. we all love to hear stories of people that have recovered and are back to living their lives. so stick around, the more the merrier.

sorry this was so long, hopefully i'll keep in better touch these days. prayers to all of you. and i hope i hear from all my friends on hear, i really have missed you all.


ps...marsha from what i've seen it looks like you had a rough run of things, sorry to hear about ti and i hope you are fairing better now.
"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

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Old 08-20-2006, 08:15 PM   #2
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Join Date: Jan 2005
Location: NJ
Posts: 1,945
6Blues HB User6Blues HB User6Blues HB User
Re: it's been awhile...wanted to say hello :)

Hey Shanna - great to hear from you!

But I am so very sorry to hear that you went backwards! That s*cks royally!!!

I'm glad to hear that you are going for gentle massage - that will definitely help move your lymph out. ALso glad to hear that the electric thingy is helping with the pain. Maybe I'll look into it.

I pray that things work out with your stupid insurance company and that this IV will do the trcik for you. GO IV!!

I hear you about the PT. I have some that I do at home and I have to force myself to do it big time.

I do a few minutes of rebounding (mini trampoline), followed by a dry brushing and then a detox bath. Sounds silly but I have to drag my butt to do it. Its so much for me after a day of work. I am so tired lately.

Your poor body is so messed up from this dumb disease - horomones, etc.

Hang in there. Don't give up. Its exhausting to fight this thing but your life depends on it.

Peace and health to you my friend!

Old 08-21-2006, 04:42 PM   #3
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Join Date: Aug 2005
Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: it's been awhile...wanted to say hello :)

So good to hear from you. I had hoped when we heard from you again that you would be seeing some improvement. But I understand the battle of this horrid disease.

I am also in a insurance battle. Have been since the first of the year. They informed me in April that they would not cover the IV's I had been having. So I will have to file an appeal. I just got a letter couple weeks ago where the Dr had tried to get coverage and they denied paying after 8 wks. They then paid for Jan but they wouldn't pay for more. Didn't matter that I tested positive for Babesia and mycoplasma. They actually said my test for babesia wasn't a CDC positive. I will take that up at my next LLMD visit.

Larry actually started trazadone last week for sleep. I thought of you. It didn't work for me, but then my Dr didn't have me on more than 100 mg. I'm glad you are getting some help with your sleep. But I understand, we could both use better quality sleep. From the way I feel right now, I would guess tonight may be one of my jerking nights. Poor Larry. I have had a horrible lyme headache today.

I did ask Denise about Maureen and Jon. She said that Jon (deer hunter) is in Kansas now seeing Dr J. They have hope that he will be able to help.

I hope the IV's will get the lyme back under control. Let me know how it goes. Pulsing or not... I can so understand what you are saying and not saying. Keep in touch.


Last edited by Pearlscale; 08-21-2006 at 04:43 PM.

Old 08-28-2006, 12:47 PM   #4
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Re: it's been awhile...wanted to say hello :)

thanks you two...

i do feel like such a strnager on here, not many old "faces". but i guess we all have so much going on.

mickie thanks for the encouragement. and don't beat yourself up about the PT, we can only do what we can do and live with it for the moment and try again another day. one step at a time right? i hope you will have more energy soon. i didn't realize you still worked even through the lyme. i'm glad you can do that, but i can't imagine how hard that must be. all i can say is you're a trooper.

marsha i'm so sorry to hear the ins mess is stilll goingon. how stressful that must be. i was up in arms when they pulled mine too, but at least now they are letting me go again. i soon hope that they will get it straightned out and cover your treatemtns. you need them. are you still doing iv's or just orals for now?

and thanks for the update about jon, it's good to knw he is tsill fighting. i too will keep in my prayers that he sees some relief and improvement.

i was really sadenned to hear that maureen is still fighting to recover from the pnemonia. t hat is so awful. wahat a strugglle. and i really had had no idea about denise and jeanne being banned. hope they will be able to come back soon. i do miss them a lot, even though i was just lurking this summer.

anyway i have a new tid bit to add about my iv's....they're not happening for the moment. tunrs out that even though dr c authorized them, he's in MO and i live in WI, soooooo i have to have a WI doc sign off and "oversse" so to speak. i went to see a dco that was supposed to help me last wednesday, and get my picc line placed. but that did not happen. i brought in all my positive test results, dr c's history and treaments and this guy loooked at me and the file and said staight to my face.........

"you don't have lymes"

can you imagine?????

having all the support in the world in front of him and telling me i don't have lymes!!!!!!!!!! he said "yes you had lymes last year, but you've been treated more extensively than i have ever heard of and whatever you have now is not lymes". this is despite the fact that i showed great improvement while on antis and then regressed when taken off. despite cdec positive and more western blots sitting right in front of him. he told me i needed to go see a neuro, have a new set of mri's, new blood tests w/ ms panels, spinal tap...the whole nine yards. i was beyond belief!!! i couldn't beleive what was happening. so i asked him well if it's not lymes now what is it? he looked me in the eye and said "i don't know, but i know it's NOT lymes.". since when do doctors in the middle of treating a disease decide that you no longer have it! would they have doen this to my brother while he died from his cancer....i can only imaine how that would sound.

what follows is all hypthetical but my brother did have and did die from his cancer....this would have never have happened because docs dont' do this to cancer patients but i guess it's ok for lymes patients, but i'm just illustrating using my own expereices so as not to hurt anyone who's gone through the fight with cancer. "oh i'm sorry bill but yes you had non hodgkins lymphoma last year, we did chemo and radiation and a bone marrow transplant. but since you're still sick this year i can tell you it's deinitley not the cancer anymore (despite that the x-rays still show a tumor next to your heart!) i can't tell you what it is, but it's not cancer."

foooooor shaaaaame!!!!! what kind of doc would act like this...i can only think of 2 words to describe this "ego trip". the extent of stupidity in medical field continues to floor me. just when i think it can't get any worse, they top themselves.

so for now, my quest to restart my iv's is on hold until i can find a doc that can help me and know's what the hell lymes is when they are looking at it. i think my mom has found a doc, a dr. meress in fon du lac WI that is known for working with lymes cases. so we are trying there. so far as i know it's a 2 month wait to see him, but we are hoping he can get me in sooner due to the circumstances. i'll keep you guys posted.

hope you are fairing ok, it's monday and rainy here...suits my mood today. but hope you get some sunshine wherever you are all today. take care friends.

"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

Old 08-28-2006, 06:09 PM   #5
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Re: it's been awhile...wanted to say hello :)

So very very sad to hear of your problems. No I'm not on IV's now either. And after the blood clots not sure I would want to again???

Denise is well. Maureen is home but still recovering. Not sure what treatment if any she will go with. She is still having mobility problems. Hopefully one day she will be able to come on and post.

I had a brother to die last year from cancer (pancreatic and liver). Your comparison was sad but true. Hang on and do what you can to detox. I will pray that the Dr your Mom has found will work out and you can soon get back on treatment. I sure wish Drs would open their eyes and recognize this. They will acknowledge lyme but not chronic. I know I'm far from well, and I do fear that there will be atime in the near future when my Dr will have to stop treating me because of the medical board. And plus the fact that I can't afford to pay out of pocket and wait and hope I get reimbursed.

Post when you can and know you are in my prayers.

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