funny…dogs & rain…

Susan R Wetzel

Dogs do NOT like the cold rain LOL! SW

haha! Neither do humans!! 🙂 NM

They need an umbrella! KM

especially mini schnauzers! SF

No they do not, except the Newfs. They bring all that water in & shake it off all over the place!!! I don’t like cold rain either. If it is going to be cold & precipitate, how bout a little pretty snow? KEH

LOL, we have two dogs. Both wanted out this morning. My brother opens the door for them, and one goes outside in the rain quite happily. The other refused to go out and has been acting insulted for hours now. LOL!!! SCP

Well…we have 1 inside teeny terrier mix, & 3 (soon to be 4) Newfs over 100 lbs each, the father closer to 200, inside! They LOVE water…but see my profile pic to see what they do when wet after they’ve had their fun!! Like in Beethoven (the movie…) Everybody DUCK! KH

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pain

Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world." C.S. Lewis

I LOST ME

My bones ache from morning till night, I am weak, I am tired, I dont have much fight. My muscles are sore,sometimes to the touch, Where has my health gone? I miss it so much. Everyone says that "You look so well!" They dont understand that Im living in hell…

Ok chest pains since friday seem to have moved to my Calves (which are rarely sore) I’ll take that trade anyday though… lets hope that will be my last episode of chest pains…. finishing my 3rd day of 4th week flagyl pulse… 🙂 PM

I’ll keep my fingers crossed 🙂 KK

‎@K thank you that will be 4 sets of crossed fingers! PM

I’m working on week 5 with my ribs hurting…..pain killers don’t help, and the patches won’t stay where I put them…………ugh… TH

‎@T… hope you feel better… I do get rib pain often tooPM

Oh… Flagyl knocked the stuffing out of me. Take care. DL

‎@D please define the stuff? the Lyme? or the S#&T? PM

flagyl brought out a lot of weird symptoms for me including chest pain and numb painful limbs. I hated it…but I think it worked better than any thing else I’ve tried! CP

yes, P, so do I. Mine usually lasts from a few weeks to a few months and it moves from front to side to back…I hope it’s on the move, my back is really bothering me. Two herniated disks in lower back, and 1 in neck….and I’m really aggravated. Dr. wants me to go back on Orencia for RA bone erosion; ins will only pay 75%, and the infusions are about $1800 a month. I can’t afford $450 a month co-pay….Our medical system is so messed up; yet we sent millions upon million to help other countries (not begruding them the help) but there are so many here at home that could use the help. We should be taking care of the US first, others second. I’ll get off my soapbox for now. Have a good one, P!…TH

T I have been on patches for 2 years now and finally after like 6 different brands I finally found one that wont move once you put it on..Not sure what kind your on but if you need help let me know…Now when I get mine filled once a month I take the box to let them know , I only want this type…LR

L, I would be very interested to hear the brand that you have found that works for you. I know we are all different and it is about trial and error but I haven’t found one that works, so I was wondering if you are trying something I haven’t tried yet. You can private message me if you don’t want it out here. Thanks so much. And P….I’m so sorry you are going through this. The chest pain is some of the worst and I too like it when the pain migrates elsewhere but for now, mine is still stuck in the chest. 😦 Feel better….CK

Forgive me P …I was rude for jumping into your post and not showing support for you..Hoping your chest pains do go away and letting you know I’m here for you if you need anything…C I do hope my info helped ….LR

No worries…. if you can help someone else thats great! PM

P, unfortunately both the S#!T and the Lyme! Sorry. BUT, having said that, it is a miracle drug for some and I know of someone it put in remission so hang in there. I’ve tried it 2 times and had such huge die-offs that I had to go to E.R. and stop Flagyl. My body couldn’t handle them dying off in such big amounts so fast. DL

Great P that ur’s has moved on and praying it doesnt come back 4 ya. 🙂 BH

get some magnesium hon..CN

C what brand should I use? do I need to check my levels? or should I just Add it? PM

I did read that Lymies tend to be low on magnesium. Might be worth a try. You can always have your level checked. NM

Wonder if Arnica Ice would help? I battle with my calf muscles too. Let us know what works 🙂 I’ll try the Arnica and let you know 🙂 PT

Flagyl is the oral drug from hell – Tige is the IV drug from hell! Praying & keeping my fingers crossed too…. We are almost always low on Zinc, Iron & Magnesium. Don’t think it cam hurt to add a supplement but blood tests can easily tell. KEH

Well…I’m still in the surgery of the month club. I have a a "trigger finger." Tried a shot (not cortisone!) but it didn’t help. Surgery next Thurs the 11th at 11. They gotta cut, repair, re-attach a tendon in my hand. Anesthesiologist wants to do this w/ me awake & just a local…oh, HE** no!! We’re gonna have a battle of the wills! KEH

I have a trigger finger too, so does my grandmother. Is it worth having surgery over? BC

OH NO!!! When I got my first ‘slider’ cell phone and started texting, I wasn’t aware that I didn’t have to hold down the shift key to capitalize a letter. 😦 I ended up w/trigger thumbs with the left being the worst. So….I backed off on that particular ‘activity’, gradually the pain went away and full use of my thumbs was restored, thank You Lord!! Being a pianist, I certainly did not want to have surgery so I’m also thankful that I knew the cause and could reverse the condition. Whew! Do you know what caused your trigger finger? How long have you had it? I’m so sorry they have to resort to surgery! I will keep you in my prayersKT

not fun…had carpal tunnel surgery awake…no biggie…and you get to eat faster post-surgery! 😀 TS

my dad has trigger finger too and has been holding off on even getting the Cortisone shot. Keep us posted and make that doctor put you to sleep first! SS

17 Oh my hope they can sort it for you xx LI

I hope all goes well Karen.:] SE

I pray everything goes well Karen Elizabeth. ((((HUGS)))) LV

Have trigger finger, had two shots..no help, but slow down on activities that aggravated it, and manually exercise it daily to avoid surgery. It has sort of frozen now…not good. JS

my dad had trigger finger, he got the cortisone shot and had physical therapy. it didn’t work. my dad’s hand is very important bc he lost 4 fingers on his right hand when he was 17. he was ‘out’ during surgery, but it wasn’t a complete cure. now he can’t completely make a fist. but he has arthritis too. BS

Thinking about that strong will you have – does the doctor even stand a chance? hee hee You KNOW I will be praying ST

and you are the boss 🙂 sometimes docs forget -WE hire them! PD

Praying all goes well, Karen! YS

B, I couldnot take cortisone b/c of Lyme. Steroids are the worst thing for us & both my LLMDs would so backflips if I did that. It was a novacain shot right into the nerve bundle (OW) but the hope was it would reduce inflammation & save me from surgery. Was a long shot…but I am sick of all the surgery… However, the good side of having had so much is nothing really scares me anymore! KEH

J ….talk to your doc. Anything "frozen" is totally bad for you! I’ll post how this goes, I don’t think it’ll be much at all….KEH

Have they tried injecting B12 to see if that would calm the nerves? Trying to think out of the box. MT

we have a lot of friends in common! my whole family has Fibro/late stage Lyme…ugh. Are we having fun yet????

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Inspiration & Encouragement

The greatest man in history, named Jesus, had no servants, yet they called him Master. Had no degree, yet they called him Teacher. Had no medicines, yet they called him Healer. He had no army, yet kings feared Him. He won no military battles, yet he conquered the world. He committed no crime, yet they crucified Him. He was buried in a tomb, yet He lives today. Re-post if you believe this in your heart. ♥

All our dreams can come true, if we have the courage to pursue them.

Always remember that the future comes one day at a time.

Any change, even a change for the better, is always accompanied by drawbacks and discomforts.

If we don’t change, we don’t grow. If we don’t grow, we aren’t really living.

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has."

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Preventing a suicide, involving detective work!

Suicide is the #1 cause of death in Lymies. Second is organ failure…

OK does anyone know E E’s phone number or home town??? I do not want to see a suicide happen, please if you have her info can you pm it to me? LSH

If you have her full name and the city she lives in, call the police! This is too serious…JR

i did already j its not her real name and maybe not the right town either, but i gave the police all the info i could. They just told me to call back if i get an address.LSH

Her IP comes back to Montgomery,AL l…..PM

calling dr LSH

If her parents are there and I assume she sleeps with her boyfriend, would she be "alone"..seems unlikely!?? SD

Oh god I hope he will help. KS

One of her friends is M B – from M, Alabama. He may be a personal friend. MK

Thank you P I called the M Al police and they wont do anything , talked t the emergency answering service and she said the dr will call me back. Does anyone know her real name?? LSH

I hope her LLMD takes this more seriously than one I called about a potential suicide. He had his receptionist call the person the next morning and say "Are you alright?". That was it. MA

there is an E C in M, looks about the right age…MC

Thanks M I wrote down the info you gave me and will give that to the dr too LSH

M I left a message for M too,,, LSH

Please keep us updated l. Were all very concerned for her! KS

When I googled E E and Alabama one of those search sites listed one in M Alabama. Not sure that will help or not. DH

Okay the nurse practioner from Dr H called me and is calling the police. LSH

thank you God! MC

L, you are a wonderful person to do all this. MC

I am so glad they are helping you do something and hopefully they will get there in time. MA

Guys – T S is personal friends with her. I just checked, they have a picture posing together. Maybe try calling T. I’ll go look up her info. NK

Thank god for dr h. And for you as well l. I pray she is ok KS

Many have tried contacting t already to no avail KS

N t has her phone turned off LSH

i have to sleep now! Please update us when you know more. I pray the police get there in time! MC

OH, OK NK

THanks though N ♥ LSH

Oh sure. Will you keep us updated? I don’t think I’m gonna be able to sleep now…….NK

Me either, too worried. Need to know she is safe. GT

I know my heart is pounding and my hands are shaking…I hate this disease and what it does to people. Im sure some nonlymies got a bit of education on it tonight! LSH

L, did the nurse say she’d keep you posted? JR

THANK YOU LORD! THANK YOU L, YOU’RE AMAZING! ♥ LM

No he just said hed call the police right away. I dont think he could really tell me anyting cuz of confidentiality. LSH

Thanks for everything you did tonight, L. You’re an angel, as always. I’ll tune in again tomorrow to see if we’ve heard from E. Good night all! ♥ JR

So we’re not gonna hear anything tonight, I imagine… wow. This is so unbelievable… What you did was amazing L. xoxo

Turns out I can’t sleep either, I really hope everything turns out good

I think due to Hipaa laws unless we hear from E or one of her friends we won’t hear anything. I am wondering if perhaps this post might be better deleted now so she won’t see it if she does log on tomorrow it might embarrass her and make her feel even worse?

I meant thread instead of post.

Then again, she might just be amazed at the lengths her friends went to out of concern for her.

Okay everyone, E is alright!!! Her friend M is with her and said she is down but he is staying with her and shes ok.

Good to hear. NK

Prayers answered! GT

Thank you, L. Big hug everybody. JR

Night J! Night everyone! LSH

Night L..sleep in peace knowing you saved a life girl!!!AS

I missed all this, and I do not know E, but relieved to hear everything is okay. You’re an awesome friend, L, and everybody for helping!!!!! CM

Thank god. I love you L….xoxo DS

You are special L !! JP

Just woke up and checked to see how it all went, so glad to see E is ok !!! Love to all and what a great job you all did ! Prayers were answered !!!!! LNS

Glad she is ok! Great Job L! Hope she realizes its only dark before the dawn…. This too shall pass as my gram used to tell me. LR

L, you are so amazing to have done all you did. I wish my sleep meds hadn’t kicked in ; I became totally incapacitated. I took them before my IM with E happened. But Thank God and thank YOU for seeing this through to a successful END! LW

Glad to hear she’s okay. Thank God you were here L, you got everyone together to try to find this woman and help her! You’re an amazing person. KS

Everyone, I was in pain med lala land & missed this, but L…you deserve a gold crown for this….& everyone else involved deserves kudos!! KEH

HOWEVER THE INFIVIDUAL MENTIONED WAS NOT THANKFUL THE NEXT MORNING. SHE WAS ANGEY (PROBABLY EMBARRASSED) AND DELETED ALL OF HER FRIENDS WHO HAD RUSHED TO HER AID, INVOLVED IN THIS. DRAMA, DRAMA, DRAMA…

HOWEVER…THE NEXT MORNING THE PERSON INVOLVED WAS NOT GRATEFUL BUT ANGEY. SHE DELETED MOST OF THE PEOPLE WHO HAD ANYTHING TO DO W THIS

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Lyme Mafia…1ST MEETING, NYC, Niv 2010

Back from an AMAZING trip to NYC. Met some of the sweetest people I’ve ever met, who will no doubt be friends (scratch that…*family*) for life. I’ve learned a lot about courage, spirit, FUN, & how important it is to be connected to people who really understand each other. Back to bed/recovery for me, but with the biggest smile I’ve had in a long long time. ♥ ♥ ♥ …DR

Awww. So happy for you. NK

I would like to like this at least 5 times! Loved meeting you!!! AVT

Wish I was able to get down to the City to meet you. You’re adorable. DB

Hope you start feeling better D!! LSH

YAY!!! 😀 im sooo happy to know that you have peeps you can talk to 🙂 im always there to keep you motivated and everything but I know i can’t really understand what you’re going through. so the biggest THANK YOU ever to all. i love seeing everyone help each other out :’) BJ

This makes me so happy! So glad you had a good time and are feeling positive!!! ♥ AI

i thoroughly enjoyed your photos! AS

Share with us what you learned pls! ♥♥♥KEH

I’m on day 4 in bed now…LOL, but SO worth it!!! Loved being with you…and I love you!!! ER

Please call me when you are in fairfax to see your doc. I will try to come see you, even if it for a minute to see your beautiful face. JS

I hope we didn’t wear you out too much with all the late night slumber parties and excitement – meaning watching Eric infuse, listening to chimpmunks, everyone holding each other up, etc. You know, fun stuff!!! HR

Still in bed but made it back on FB! Holla!! Thanks for all the kind words, and all the "likes" 🙂 It truly was an unforgettable experience (even w/my crappy Lyme mind). ;D Ash, Lisa, Eric, Joan, Helen, I LOVED meeting you and had so much fun w/you (and Joan I’ll def. call you, thanks! :))! Nancy, Donna, Adi, Karen, I hope you can make it next year! Bethany and Amy thank you for being such great friends…I love ya! DR

back atcha girl…"Lyme Mafia member…" next yr for sure! ♥ hugs… KEH

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I Lost Me

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Toxic people keep us sick…DO THEY HAVE A “DELETE” button for “real life”, off FB?

Toxic people make us sicker. It seems easy to take things out on us, cause we’re always around, we seem quiet & subdues, like we won’t fight back. It hurts us to our core, cuts right into our soul, harms our immune systems….and watch out if we FO decide to fight back!

Delete, Delete, Delete……here we go! JN

Dont delete me : ( JS

Don’t delete me either, love your posts! AC

I am telling you FB has been bonkers lately! LA

Keep me too please….:) AL

Don’t delete me, please, love your posts. JE

And me! Even though we aren’t always in touch, you’re in my thoughts and I quite like you 🙂 CM

i see how it is MW

I think it’s sad that people have to be cruel to others but I’m not going to deal with people bashing my friends. No way….J don’t play! JN

I just recently had to get arid of mean hearted people too. It’s always good to dust off for a minute and the surround yourself with winners, positive ppl, love, and happiness. LC

LOL….now youre doin the "B thing"…..hahahahaha….its very healthy….trust me…: ) BW

were you deleted and blocked too? Lord have mercy…all for trying to do a good thing. NV

hahahahaha….j i dont care…im tough skinned….as i posted last night im goin have no friends soon…LOL…..im cool with all of it actually….im outspoken and i will never change so….: ) BW

good for you B – you stick to your guns!!! Don’t delete me! I’m loyal & defend my peeps! KEH

karen…that aint happenin girl…i LOVE your wall posts….we’re on the same page…: ) and yes j i thought my friend left fb until someone said no she is on im just blocked….its very sad she went off like that. BW

I just don’t get it B…I don’t. We should all be one big family but it just keeps getting torn apart. Sad. JN

well j honestly some people just are different BUT i have decided that i cant get well with toxic people in my life….i wouldnt even be on this stupid fb if i wasnt bedbound….id be out helping others get well BW

Toxic people keep us sick no doubt. My issue is this…NONE of us should be toxic to one another. We should all just get along and help each other heal. That is just my wish but I know it’s not the reality here. J’s fantasy world. JN

some feed off of drama j….i learned that real quick and im goin have some in my family soon….uugghhh…..prayin the Lord steps in and puts a stop to it…BW

I agree!!! :)) JI

why is it that i always miss the drama???? darn it ! j ,where have you been women ? i thought you deleted me !lol I’m sorry now j that u had a bad experience, thruthly! SW

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The insurance approve/dosapprove dance…

Sick as we are, we do NOT need insurance co.s to play games with whether we’re covered & for how much, how long. We are too sick to be able to deal w/ it – physically, mentally, emotionally. But they do it all the time…

ATTENTION LYMIES: I need help. I just got a letter from my insurance company saying that they would not pay for services rendered from Sept 4 – Nov 8. They are just now telling me this Nov 14th. So I will be 10’s of thousands of dollars in dept to the infusion company. What can I do? They seem to have found out about lyme. SN

They had previously approved the doses & nursing visits. SN

DISLIKE!!! 😦 SS

Appeal! GT

They did this to me with Bicillin. First several months, I paid out-of-pocket. Then they paid for a while. Then they retroactively denied and I did have to pay back. I appealed, did the grievance, the whole thing and lost – they kept sending their papers on what their definition of acceptable treatment is, and everything else according to them is experimental. This was the beginning of my major downward spiral into debt so I don’t know what to say. JE

if they approved it at first and the DR ordered it, I would appeal it for sure. Let your Dr know about it too. They shouldn’t be able to denie it because of Lyme, if it was causing other medical problems the DR is treating, that’s what is important. I can’t find a Dr who will do the IV for me. Haven’t run into insurance problems YET about that part, but put up a fight. DB

Somehow they are mentioning a Western Blot & lyme disease. They are saying they will only cover the first 28 days. I don’t even know how they found out about lyme in the first place. So how can I appeal? On what basis? I have forms to appeal but I don’t know what I should put in them. I am negative on the Igenex Western Blot but have only a positive PCR, which they will say is because I USED to have lyme. I’m a little freaked out right now. SN

OMG! This is one reason I don’t want to get an IV. This would so happen to me as my luck is just so bad. UGH! I hope you can get it straightened out! AC

I was CDC-positive on the IgeneX Western Blot and positive for all coinfections and it didn’t matter. I sent them excerpts from Dr. B’s guidelines indicating that Bicillin can be nearly as effective as Rocephin and that didn’t help. I sent all kinds of studies, the studies from Fallon at Columbia about long-term antibotics being needed, nothing helped. They had their sheet of acceptable and non-acceptable. Maybe someone else will post who had success with this, but I didn’t. CALDA does have a past issue of Lyme Times about insurance that I looked at but nothing I did seemed to get me anywhere. JE

Talk to your Dr or billing and see if they can help you with the appeal process, or check some of the Lyme forums and see if anyone else has had to fight this and how they did it. This is so UNFAIR to us ! DB

That’s what I’ve been worrying about with IV too. I hope you can get them to pay. AC

I am upset that my infusion company just never said anything to me. I made it clear to them if my insurance wasn’t going to keep paying, I had a cash company that would be cheaper. I would not have kept the nurse. I now have to pay for 20 nursing visits that they billed at 2 hours each (not EVEN close in time, maybe an hour max). And 118 days of rocephin. My infusions cash price of the rocephin is $95 per dose. That would be $11k!! SN

No advice as in UK we dont get insurance at all….so know all about the debt stuff but wishing you luck Sonya..its cruel how they pull the rug, least we know over here we on our own from the off… YF

If I would have known, I would have stopped using them right away. SN

If they had approved it you probably can fight it, although winning it wont cover further treatments, also talk to the iv company usually medical care has two different prices, one for ins, one for out of pocket, they may drop some of the price. JM

I have been told that you need your doctor to write a letter supporting the treatment, saying you have improved wiht it, and keep appealing, appealing, appealing, no matter what. It might also help to contact your elected representative and see if they can put a call in. Most of all I’ve been told that you want to document that the treatment has improved your condition (even if you have to be dramatic). WW

Plus, if worst comes to worse, I would not agree to pay for anything up front. The infusion company is making a lot of money and has room to negotiate, I’d say by at least 50%. But I would just keep appealing with the insurance. Don’t give up! WW

I am scare to death of the picline anyway, now to know that it may not be covered what are our options, so far my insurance has covered all oral abx makes me stress also and we all know stress is not good for lyme, S we will be praying for you…SM

s who is your insurance company??? SM

They did the same thing to us. they owe us 100,000.00 dollars of un reimbursed claims. Our kids were in treatment pre approved and they decided when it was enough and didn’t tell us until we were done with iv treatment. They are the spawn of Satan. KN

We have appealed 4 times are still appealing. No lawyer wants to take on BC/BS…KN

All the coinfections don’t seem to matter to them. I feel your pain and praying for all those going through this kind of nonsense….KN

I’m so sorry S. I don’t understand. If it was pre-approved and services were rendered, how can they charge you? It’s that the point of getting "pre-approved"? I’m so sorry. When I got my PICC every month I waited for a letter cutting me off. It was inevitable. Never did I imagine they could go back and charge me for services that were pre-approved. AF

No kidding. Well, according to my infusion company it was approved. They told me the most I would ever pay out of pocket was $2000k. I told them that my insurance may choose not to pay & she said not to worry about it. SN

Appeal. Follow the advice like those stated above. If they originally approved, appeal. I was denied previously way back when and I kept appealing; then "approved". Can’t say it will happen w/you but it is worth the effort. LN

The Blue Cross approval letter states that it does not guarantee claims payment, which is total BS to me. Why approve, and then unapprove later after the services have been performed? Depending on their processing time, it can be weeks or months before you know that an individual claim was denied. LS

See, but I am not positive on the Igenex test, so on what grounds can I appeal? I will see if I can get my doc to write a letter. And Linda sent me some info from CALDA. I’m going to call my infusion service because every month, I would ask them if my insurance was still approving. SN

Are u talking about months or weeks on the IVs? If so then it is true that BCBS will only pay the 1st 28 days. You need to appeal and ask for a specific reason, unless this is the IV. That they will not touch. That’s b/c of out great friends the IDSA. Since I am disabled & have Medicare also, that picked up some of it but it was still a LOT of money – over $25K (my mom & those who donated to us…) Now the infusion company, who told me every week how much it’s gonna be & I paid it wants $2900 more b/c there was a "miscalculation." hey…I’m telling them, not my fault. I have nothing…so they can sue me til the cows come home & still get nothing… KEH

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