LLMD is referring me to an ID (Dr.D in Morristown) for IV.
He feels that it's time for IV since:
1) After extensive Oral Abx Tx, I'm no longer seeing improvement.
2) It appears as though my symptoms are worsening again.
3) My symptoms are no longer indicative of Babesia, in his opinion.
4) I have developed a positive test.
I have no idea what to expect from this and don't know what to look up to make myself less anxious over not knowing what to expect.
I'm going off to peruse the newbie links to see if I can find some answers to the questions I don't know that I have.
I have also been assured that he is not abandoning me and wants me to come back when I have finished IV Tx.
I don't know of Dr.D to be an LLMD, he is an ID and that scares me.
I am feeling very sad.
[ 06. September 2007, 07:18 PM: Message edited by: AliG ]
Posted by CaliforniaLyme (Member # 7136) on :
IV saved my life, kiddo!!!
Best thing that ever happened to me!!!!
YES it has risks but- were they worth it??
For me yes yes YES*)!!!!
I was SO scared. Pre _IV , I used to faint at the sight of blood. Not kidding! NOT exagerrating- I WAS A WIMP!!!!!!!!!!!
After a week I was a pro*)!!!
Yup, it is scary!!!
It is.
But maybe on the other side is a new life- it has been for me- way betetr than I ever dreamed possible-
Best regards, Take care- and be brave!!! Sincerely,
Posted by waldenflo (Member # 12960) on :
So sorry that your progress has temporarily stalled. Im guessing your LLMD refer you to an evolved ID, if there is such a critter. We all embrace and support you. You have a helluva great team with you! Best of luck!
Waldenflo
"Life is a Team Sport."
Posted by stymielymie (Member # 10044) on :
not to worry, unless you read cobebs posts about her iv, please don't. she's a comedian at heart.
the procedure is not difficult, they can sedate you to put in the line. the line needs to be above your elbow, so moving your elbow does't bend the tube.
it should be done by a radiologist in hospital or out patient. takes 10 minutes, but done under sterile conditions in or.
i found it easier to give the iv myself rather than a pump. the pump is heavy and have to carry it like a pocketbook.
some docs do it in the office, but it is really much easier, once you learn to do it at home with an infusion service.
takes about half hour to 45min per day, watch tv get rubber shower cover or use newspaper bags to cover in shower.
piece of cake, i've had 3 in 7 years.
docdave
Posted by AliG (Member # 9734) on :
Thanks Sarah, for the words of encouragement.
Thank you Waldenflo for the support. I've had bad luck with ignorant, pompous, self-absorbed, egotistical, dogmatic, closed-minded, condescending IDs in the past. I guess it's left a scar.
My LLMD is a wonderful man, I would hope that I should be able to trust him not to send me to someone who would harm me.
Dearest ChocDocDave,
Thanks for the warning about Cobby's IV threads. I'll be sure to stear clear until the line's in. I'm sure she must have some doozies I'll be better able to laugh at later.
and.....
ARE YOU OUT OF YOUR MIND?!!
quote:Originally posted by stymielymie:
the procedure is not difficult, they can sedate you to put in the line. the line needs to be above your elbow, so moving your elbow does't bend the tube.
it should be done by a radiologist in hospital or out patient. takes 10 minutes, but done under sterile conditions in or.
Not at all what I had in my mind WORSE!!!!! Now I'm REALLY freaked out!
However I AM much better off to see that coming, so thank you, most exaulted Chocness.
Also - QUICK, HIDE THE CHOCOLATES!!!! I think your wife is coming! I just saw a new member listed up top, while switching out of my profile, goes by the name of MrsDocDave!
Thanks Doc! Ali
I guess we all better stop smoochin on ya too! (Hope she has a sense of humor)
Posted by Cobweb (Member # 10053) on :
If you can't sleep tonight I rebooted (don't know why I put that in there) the novella I wrote about my experience with IV.
Bottom line-best thing that's happened to me . Enjoy!
Carol
Posted by lymedad (Member # 8074) on :
AliG,
Here's something to chew on:
A little over a year ago, our daughter was bedridden, had excuriating pain in joints/muscles, her migraines were so intense she would stay in her darkened room for days at a time, our trips to the ER were almost weekly.
She's been infusing Rocephin since February 2006.
Tonight she's out with friends at the local Starbucks. She walked the three or four blocks to meet her friends. After the coffee/tea/talk time, she's going to walk another three blocks to pick out a magazine or two at the local drug store.
Prior to the insertion of the PICC line, our girl had to have blood drawn while laying down because she always fainted at the sight of needles.
Today she does her own infusions, changes the port line, cleans the insertion site on her arm and changes her own dressing.
Without IV antibiotics, she'd still be in bed.
Good Luck
quote:it should be done by a radiologist in hospital or out patient. takes 10 minutes, but done under sterile conditions in or.
This is exactly the way she had her PICC line inserted, I was there with her in the OR.
They had to take "pictures" during the insertion and after it was done. They had to make sure the line was in the correct place near the heart.
Posted by AliG (Member # 9734) on :
Lymedad,
You're such a great guy! Thanks for the motivation. I'm so glad your daughter is doing well. Every little girl should have a Daddy like you to look out for her.
Cobby, Cobby, Cobby-
For me? YOU SHOULDN'T HAVE!!!!
It's sitting out there like a big old car wreck. I'm REALLY having trouble not going there. I just KNOW it's gonna make me pee my pants!
Tell me, seriously, is there anything in there that might scare the bejeepers out of me? Or is it all just CarolCobWebbish funfoolery?
I just thought of something! If this has to be done in an OR, (that is the case, right?) then I don't have to be terrified of this ID appt. I just have to worry about him telling me I don't "LOOK sick enough" to really have Lyme.
He'll have my test results & letter from my LLMD, so hopefully that shouldn't be the case. I have to do some googling and make sure he's not an IDSA fellow. (even they'll Tx a CNS infection with IV if you can prove you have Lyme )
Posted by AliG (Member # 9734) on :
I couldn't take it anymore, I had to start reading. I'm not real far through yet, but I have to get some sleep.
I got to Stymied's helpful info about needing a 30ml bubble to kill you and now I know why he told me to steer clear of the thread .
Do you realize this is now a Cob-Carol Classic?!!! I do so appreciate your work.
There seems to be lots of helpful little tidbits in there! (I'm back up & still reading) BTW-how did you know I wouldn't be able to sleep?
[ 07. September 2007, 09:27 AM: Message edited by: AliG ]
Posted by trails (Member # 1620) on :
it can be scary but it can also be so very helpful! you will have great support here with lots of knowledgable folks who can help guide you thru. You are on the road to better times for sure with IV!
Posted by sonwithlyme (Member # 10942) on :
AliG, Everything will be OK! My son was only 9 years old when he was diagnosed with lyme-Aug, 2005, He was very critical when he was admitted to the hospital, he actually had lyme-meningitis- His IV and then his PICC line saved his life. He is still on the journey of oral antibiotics and probably has a long journey ahead of him, however, he is alive! He did very well with his PICC at home. Good Luck
Posted by AliG (Member # 9734) on :
Thanks Trails
I know my buddies here will get me through this, that's why I'm much calmer than I actually would be without Lymenet.
I know I have lots of people I can count on in the tough times, as long as I can drag my butt to my computer and manage to actually compose coherent statements.
Cave of Sweetness and Serenity,
You make it ALMOST sound like a pleasant thing.
Are you sure about the Herxs? I thought IV got through BBB better than orals, so I figured my herxs would be worse.
I think there are two things really scaring me now (aside from the ID, 'cause that's a given).
1) My puppy looks a lot this, when she grabs me by the arm to take me to the door/kitchen/etc., except for the snarl:
I'm afraid I'll need a port surgically implanted. I don't really see any other way to insure my safety.
2) The scariest thing I read in Carol's thread was that I MIGHT HAVE TO HAVE PEOPLE COME TO MY HOUSE!!
Oops there's three:
3) If the Herxing gets nasty, I don't know how I'll deal with DD & dog. I guess I may have to make that DH's problem somehow.
Thanks for the pm offer, knowing me I'll likely need some calm, rational sanity. It's nice to know I'll have you there when I can't find any of my own.
I think maybe I should actually be calling you the "Cave of Sanity" because somehow you manage to keep all us "Lyme-nuts" a little more grounded. Your such a great person, I feel truly honored (and thankful) to know you!
Sonwithlyme,
I'm so sorry to here that your son had to go through that. The poor kid! That must have been a really tough time for you, as well. I'm really glad that he got through it and it has helped him. I pray that he is fully well again soon.
My pup looks like the one on the right:
[ 08. September 2007, 04:10 PM: Message edited by: AliG ]
Posted by Cobweb (Member # 10053) on :
This post addresses issues of IV, animals, and housekeeping.
At least the weather is getting cooler-so you can wear long sleeves more comfortably.
And does your dog usually pull on the same arm to take you to the door? If so-choose the other arm for the IV. Also remember that it will be placed above your elbow-not in your forearm.
also it will be placed in the inside of the arm. Mine is held in place with stitches.
And about the home health people going to your house-remember-they are there because you are sick-and a messy , unkempt abode only supports this fact. I don't care anymore.
And sometimes, well most times, I clean off the hospital tray by the couch-at least for the nurse's visits.
Right now this TV/Hospital tray has
a paper plate with the remains of fried rice on it, and a pair of scissors, a community newspaper, the red plastic bag for the sharps container, two bottles of Natural Tears, a pump bottle of hand sanitizer, two remotes, my cell phone-I think,I hope, I'll know if it rings, a catalog from a nearby community college( I like to dream), directions for the new 10 Motor Programmable BackMassager (7 bucks at Walmart!), hair twistie, 9 volt battery for bathroom scale, extension cord, gum, alcohol wipes, fully loaded heparin syringe, two packets of YIPIN (no MSG)duck sauce-one open, one unopened, a couple bills-unopened, a packet of Activated Charcoal(?), Synthetic Powder Free Exam Gloves, water bottle, two small gladware containers of pills and last but not least- nail clippers.
Also about the dog- My dog, Ash, is a lap dog, and until she learned that when I was attached to the IV and I could not be attached to her, or her to me, I should say I had to put a barrier between us-like a big pillow or sunday paper.
She learned quickly just to snuggle quietly next to me when the tubing came out. I also learned, I could sit in the computer chair where there's barely room for my butt while infusing and she would just have to amuse herself.
Ali- the only thing that makes me flinch when I read your posts-is not the dog- the dog is lovely, but your mention of ID.
My IV was placed in Interventional Radiology Department at local hospital. Very familiar with the procedure, doc talked me all the way through, no surprises- I was awake, but not feeling a thing.
Take Care, Carol
Posted by AliG (Member # 9734) on :
You guys think I'm kidding with the pics. My dog really looks like a wolf, she's become quite the local celebrity. She looks like one and acts EXACTLY like one. It's positively freaky!!
We got her right around the time that the two most recent tick bites took me out of the game. It's not her fault AT ALL that she's taking so long to learn that she can't be the alpha female.
She has finally started coming around but it has not been easy for me with my DH hardly ever home. She is now 16 months and 72 lbs.
I did realize that the face in mouth pic was more of a social thing. You should have seen her confusion when I did it back to her one day (YUCK!!) I think I made my point though.
A trainer can't really help me because they really train people how to work with their dogs. It has taken her WAY too long to develop trust for anyone outside the pack. (I blame her first vet for this but that's another story all together.
She has never been treat/food motivated and from a pup didn't seem interested in being affectionate either. She also didn't really care if you turned your back & ignored her either.
She's not like any other dog I've ever known in my life.
I think I mostly knew what to do, I just couldn't always do it & the lack of consistancy made it really hard. I had just been too to think/react fast enough and had very little physical strength to react as quickly as I would need to for her to understand what the problems are.
It was really terrible timing for both tick-bites & new bizzare, large-breed puppy. She is a "Native American Indian Dog" (NKC registry) and I'm convinced that her lineage is probably a lot closer to wolf than the breeders would have you believe.
We have seemed to be making much quicker progress lately and she has become more interested in gaining my approval. (THANK GOD!!!!)
I've been working on the arm grabbing thing & she's starting to actually think about it most of the time. Maybe I can get her to stop by three weeks.
I also never know when she's going to come flying in and jump on me when I'm sleeping. I realize that she's just being playful, but at 72 lbs., OUCH!
Carol,
I have to say that I realized, after I posted my thoughts on the mess, that I really don't care either. It takes more strength than I have right now to care. I certainly do appreciate your elaborate reinforcement though . You have such a way of making a point.
I THINK most nurses get into the field because they have compassion for sick people and want to help them. I hope I'm right.
If anyone coming here doesn't understand, I'm sure they could easily find a job bagging at the local supermarket.
I think I figured out the reason for the ID taking over for the duration of IV Tx, My LLMDs office is only reachable about 20 hours a week and then he's in with patients and doesn't accept interruptions. I think with IV they may need to be more accessible.
I think interruptions might mess up LLMD's concentration trying to analyze co-infections. I get the distinct feeling from him that he doesn't like to make mistakes. I think that's a good thing.
The computer chair! That's where Shania "gets" me because I'm distracted and not paying attention.
I have such a headache right now. That's why it's been taking me so long to write this. Sorry if I missed anything in my reply or if it's disorganized & makes no sense. I'm only on 200mg Doxy/day right now & I can almost feel my brain turning to swiss cheese.
On a positive note, maybe I'll be too stupid to care or realize what's going on when they hook me up.(HaHa)
Cavey,
Thanks for the reinforcement. Posted by Lymetoo (Member # 743) on :
Posted by AliG (Member # 9734) on :
Thanks TuTu Posted by kelmo (Member # 8797) on :
Hi. I woke up at 5am this morning, which really irked me because I've had a long, exhausting week and really wanted to sleep.
Anyhoo, I am just reading posts on lymenet and came across this one.
My daughter is having major spine and head pain recently and oral abx only made it worse. Beyond worse. She's a tough soldier, but it got too much to cope, so she is taking a break to let the spinal cord swelling go down.
I've been trying to do homework on IV. My LLMD does not do them. I'm wondering if he will refer. It sounds to me like everyone has made a major improvement by trying it once, then following up with orals again.
As for the wolf picture, and Cave's experience with dobies (I love em), I wanted to share a recent story that broke our heart.
We acquired our third doberman when my daughter started treatment for Lyme. Our 14 year old doberman had just passed away and she was having hallucinations and night terrors at the time.
Having a doberman roaming the house at night is a comfort that she had known since she was born. We've always had one. They are the cadillac of dogs.
So, she and her Dad and I went to a breeder and we picked out a puppy and she named him. We thought it would be a comfort to her as she herxed and went through hard days.
Of course, it became my responsibility to take this dog through training, take care of my daughter, work part time, etc. I think that's what sent me into my own Lyme treatment.
This new doberman was the most difficult we ever had to train. He was brilliant, but he hated going to class. Most love to work. He was the hardest to housebreak.
He used his mouth like a hand, as you describe with your wolf-dog. It was hard to break that habit, and he wouldn't listen to "no", it didn't matter to him how long I turned him over and dominated him. He would go back to square one and we would start over. He backtalked, he poked, he would put his head on top of ours, so we could never sit on the floor below him.
In spite of this stubbornness, this dog never destroyed anything. We've had dogs eat couches, trees, shoes, toys. This dog never even jumped up on the counter to get food.
Then some aggressive signs started to crop up. Neutering usually takes that away, but for him it didn't.
At one year, he wouldn't let my son (who still lives at home) in the house. The dog would go into a rabid rage with snarling, eyes dialated, crazed. My son could never be home alone with him. Or, if he did, the dog had to be muzzled.
I put my hand on my bedspread to keep him from chewing it, (more like a pacifier--kindof OCD) and he bit me, hard.
We tried homeopathic medication, traditional vet meds like prozac, we put out big bucks for a one on one training, and had an appt with a behaviorist.
In one week, he went into a ten minute rage and had us all frozen in our chairs because my husband reached down to pet him. A few days earlier, he pinned my daughter to her couch, snarling and growling three inches from her face. I wasn't home to intervene. She was reading a book and reached down to pet him.
Two days later, he attacked me in my sleep. He bit my hand over a dozen times. At that point, the hard choice had to be made. The breeder didn't return contact, she got her money and ran.
Putting this beautiful, brilliant animal down a couple of weeks ago was so horrible, it is only now that I have been able to talk about it.
With all the money spent on my daughter for her health, and the incredible amount we invested in this dog, we are now so far in the hole, it will take years before we can get another dog.
Just needed to get this off my chest. It has nothing to do with your dog, it's just seeing the picture and Cave's post about dobies (and, I still love em) sparked my emotions.
I will miss our mornings, sitting on the porch swing while I read the paper and had my coffee. He loved that porch swing, and loved even more when we sat with him. Weird, huh?
I had to walk him every night because he had so much energy. I loved Christmas walks with all the lights in the neighborhood. I felt safe walking all hours of the night with him. He pranced.
He was a paradox, and I'm sure his brain was tortured. He smiled when we came home, but he never licked or kissed. I never had to kennel him when I left the house. As soon as I went out the garage door, he zoomed to his own bed, and wouldn't get up until I returned.
He wept when he couldn't find us, and the only thing that scared him was getting in the pool. Which he clung to me for dear life, his front legs wrapped around my neck, even while wearing a doggie life vest.
The only consolation in this was the unanimous concensus of all that had to deal with him that destroying him was the only option. His adrenal glands may have shiveled and disappeared, or he had an organism in his brain. He was bred on horse property, in a west nile area, so...who knows.
Anyway, sorry for this epistle, I feel better.
Kelly
Posted by kelmo (Member # 8797) on :
Thank you. I'm sorry you had to go through that, as well. The vet said this behavior usually shows up as rage syndrome in spaniels. The vet has had dobies for years and said it was out of the ordinary.
The fact that your dog also had it makes me wonder if something is going genetically wrong, or if they are succeptible to lyme bacteria in that way.
We have always had males. I really tend to like all male animals, even cats. I like the strong personality.
I didn't meant to hijack the thread, and we can talk PM if you like. I would love to hear your story.
Our first dobie we got when we first got married. By the time our kids arrived he was three years old. He weighed 100lbs and the kids used him as a stepstool to get on the couch. He never moved a muscle.
Our second we got when the kids were 5 and 3, and he was the best dog we have EVER owned. He didn't have papers. His temperament was loved by all. We were grateful for every year he lived beyond 10.
They need boundries like no other dog or they will take over your life.
We will most likely get another. But, we will be wiser. This dog's name was Trigger...Herr Trigger. Appropriate, huh?
Kelly
Posted by AliG (Member # 9734) on :
Sorry you both went through that. My mom was trying to convince me to put her down but somehow as hard as it's been I haven't been able to consider it.
She has destroyed pretty much everything in the house. I've caught her on the kitchen table & the counter as a puppy(?!)
I even had to change vets after she tried to kill the previous one. The "death roll" is what he said she did when they tried to contain her.
They dragged her away from me, in a sitting position, by her leash at 9 weeks to take her into the back to weigh her etc. Each of the next two visits she got more fear aggressive.
She had to be treated for worms and had a kidney infection, that I caught during this time, so was Txd with ABX and Metronidazole.
I did become suspicious that she might have picked up Lyme/Babesia, after all she was teething on my scratched up arms and had been bitten by a tick.
I told my suspicions to the next vet (as my DH rolled his eyes). He drew the test for Lyme, she was negative. I'm still wondering if Babesia may be (have been) a factor. She tested pos for Coccydia(sp) and I think that was Txd with ABX & Metro also.
Maybe it was actually these Txs that made a difference with her. I figured that perhaps it was painful for her to be petted because she would snap at me after one or two strokes. She didn't even like to have a hand laid on her. She didn't want to be close or cuddle. It was very, very strange.
She has gotten very attached to me now & does actually like to be petted.
I'm thinking that if she felt the same pain as I have, then it would have seemed horrifically cruel to her to roll her over. Even petting could have seemed like punishment.
For the longest time the only thing she would tolerate was scratching under her chin or behind the ear.
I think perhaps the Tx for Coccydia was sufficient to take out whatever was bothering her. I don't know if the timing of the first ABX would have thwarted the testing in a dog? Or if a co of Babesia could effect the AB response, like it can in humans.
A friend & their friend had two dobies from the same litter. The giant male "Dandy" was the size of Marmeduke. He loved me.
He'd get so excited when I would go to the house that he would run, like a cartoon, with rear legs spinning until they caught grip. he woulld go straight back to the kitchen, slam on the brakes and skid into the cabinets. Then he would start over from there and come skidding back into the sliding glass door.
He would do that over & over again until I came in. They would yell jokingly "Dandy, your squeeky toy is here". I would go in, he would stand up & put his paws on my shoulders (looking down at me) and give me a great big kiss. Then I'd dance with him.
He was such a big loveable goofball, what a GREAT dog!! His sister on the other hand.....
She was sitting on the couch behind me when we were all watching TV. I turned my head toward her and said "Hi Inky!". She bit my face. Left a puncture on my nose & under my chin. They told me it was just a warning, if she really wanted to bite me, I'd have no face left. (True, but not very comforting )
Her owner had a terrible time with her, trainer & all. It is amazing that two dogs from the same litter could turn out to be such polar opposites in personality. I wonder if she had been sick as a pup?
With my dog, I have learned that the best way to communicate that she hurts when she bites down has been to "bite" her back. I would give her a firm pinch with my fingers after I said ouch. She started becoming more gentle.
I tried to roll her a few times as a puupy. She can actually turn her head 180 degrees with ease and cat-like quickness. It was like she was possessed. It would turn into an all out wrestling match and never seemed to leave much of an impression.
One day I actually "lost it" when I had some more strength and chased her around in full-blown rage, with the intention of killing her with my bare hands (of course I would never actually do that, but I wanted to.
She tried to out-maneuver me around a 4 ft square marble coffee table. We went side to side and finally I let out an angry yell and dove straight across at her. I got her tail, pulled my way up, pinned her on the ground with my forearm across her neck. She struggled a little the stopped. When I calmed down I let her up.
She was afraid of me for a little while & I felt terrible. I tried to get her to do some tricks for treats & she just looked at me like "No way, you're CRAZY!". After a little while, we made up and she was like a different dog afterwards.
She still has her moments when she tests me, but I think that my psychotic episode made her think twice about trying to take out the alpha female.
I also had to defend her once in the dog park from an awful nasty dog who kept attacking her despite her repeated attempts at submission. The dog's owner had absolutely no control over him.
I finally had to chase him down, put myself in between. Growl "DON'T YOU DARE" in my loudest growl and puff up & posture at him, similar to what I did to her before I pinned her.
He backed off, his owner finally got hold of him & took him out of the park. I am so lucky I'm not dead! My Lymed-brain made me do it.
Afterward, I realized what a horribly stupid thing it was to do, but I couldn't let him continue to attack her. He actually drew blood on her leg.
Mind you, I don't know what breed it was. If it had been a Dobie or a Pitt, I honestly don't know what I would have done. I don't think I'd have the brass to challenge them, even in a blind protective rage.
What on earth am I rambling about? Well that stopped me from worrying about the IV for a while, anyway. Posted by on :
![[Eek!]](eek.gif)
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![[group hug]](graemlins/grouphug.gif)
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(Hope she has a sense of humor)
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The poor kid! That must have been a really tough time for you, as well. I'm really glad that he got through it and it has helped him. I pray that he is fully well again soon.
![[dizzy]](graemlins/dizzy.gif)
to think/react fast enough and had very little physical strength to react as quickly as I would need to for her to understand what the problems are.