posted
8-3-06, please read down below; long, detailed update on BBS; everything that could wrong yesterday did! Prayers still needed badly lymies. Thanks so much....
My fellow lymies, the below is from BLACKBIRDSINGS to ICESKATER, and is an update on both of their health.
Please put them both in your thoughts and prayers! They have both been through so much. BBS is a young 20s actress, whom I become acquinted with thru ICE.
FYI, Iceskater has been losing her eyesight since last fall; no one can figure out why, and been through so much also.
Many of you have been reading both of their lyme journeys with us. Here's an update on both. Please show your replies below.
I will send both BBS AND ICE the direct link so they can read YOUR thoughts to THEM!
God bless you all for your many kindnesses to them as well as to all here on this wonderful, supportive board especially at times like this! Bettyg
Katherine is doing poorly. please keep her in your prayers and I am going to send her a email card to cheer her up.
I normally don't forward things, but since she is doing poorly right now, I thought if everyone read it, then we would all know what is going on. Have sent to Dana and Betty Love, Sandi
Date: Mon, 31 Jul 2006 19:57:47 -0400 Sandi,
How are you doing? Is the new treatment helping at all?
I am still sick and going to a new doctor on Wednesday. I have been in bed all day with a temp hovering right below 100F though it has hit that and comes back down.
Sinuses are still infected and now I have that lovely pressure that isn't easing up.
Friday I went to the vascular surgeon. They were horrified more hadn't been done for me.
They ordered a test for Wednesday of this week. I forget the name...
They will put an IV in the clot side and give me contrast and take pictures.
From that, they said that they would know the status of the clot, if damage has been done, and how much longer to keep me on coumadin.
The doctor said for me to continue to rest it until we know more.
I am allergic to shellfish, so they will be giving me Prednisone tomorrow.
I little freaked about the steroids, but the hope is that I will handle three doses without a problem, and since the test needs to be done, I'll have to tough it out somehow. Also, going to take some benadryl.
Went to my pain management doctor too, and he changed my meds a little more, and the change is helping alot.
Although today we missed a dose and it really messed me up, but we are closer to being back on track now.
He listened to everything that is going on, and said he would do what he can to get me help NOW.
I told him I went to the primary and . said I was worried I soon wouldn't be able to walk due to how bad the edema is getting, . that I was worried about the infections, I needed something done, because I was going downhill more and more everyday . and didn't know how to hold out till October.
The primary is doing nothing, and keeps lecturing me about how bad it is to be on pain meds.
My father gave the primary a nice talk about staying out of that and that he needs to stick to treating infections. . Also, told him he needed to stay out of the pain meds, since I have a pain management doctor for that, . and it's the only thing keeping me comfortable and , giving me any quality of life at this point and that I need it, until everything is figured out that is going on with me and treated.
Doctor thinks I should do yoga and tai chi to take care of pain, and just tough it out. Turns out he tells all of his patients this, and they all complain to the pain doctor about it. So at least we know I am not the only one...
My pain doctor got me in with a primary that is about an hour away from here, that isn't taking any new patients.
Due to my case and how badly I need help and a doctor that will listen to me (the current one won't listen to me, barely listens to my mother and only listens to my father).
This new doctors wife is in infectious disease with an immunlogy background. I may end up going to her some, if they think she can help.
Pain doctor is working on finding an immunlogist that works with rare stuff, that they think I may have.
So Wednesday is going to be a very loooong day. Hospital for that test all morning and than the new doctor in the afternoon.
I have been out of touch since I have been doing worse.
My body is SO severely swollen, that I am struggling to walk. My legs have so much edema, that my kneecaps no longer move.
On a better day, they now move a teensy bit. So it's making it hard to bend them, and get in and out of chairs.
It has at least calmed down enough that I can roll over in bed and not yelp from pain of moving my legs.
My pain dr said they looked a bit like a camels legs, and I told him they go from that to looking like an elephant.
That is what is going on here. Just not doing well at all...
The bronchitis has calmed down. Ended up doing breathing treatments every four hours for that last week.
I have something to mail to you, but keep forgetting with how I am doing.
Sandi, Do you keep a journal or anything like that? I wasn't sure if you were with your eyes giving you a tough time. If you do, please let me know.
I have learned how to do bookbinding and have been making journels and blank books.
If you let me know the size that is best for you, lined, blank or grids for the paper, and colors you like. Sandi, I would love to make you a book!
We found I can do this in bed or on the floor. It makes me feel good to make something so pretty that is useful.
Talk to you later! Katherine
Sent: Tue, 11 Jul 2006 2:49 PM
Katherine, I am so sorry that you are going through hell right now. Feel free to call if you need a shoulder to lean on. call me.
Mom and I both have to start physical therapy this coming week due to the back sprain from the accident. This will be for 4 weeks and we go from there..... lovely isn't it?
On a positive note, our family doctor put in for a grant and got it to attend the ILADS conference in Philadelphia in October .
Some docs are willing to learn....hooray... stay in touch!!!! Sandi
posted
Sandi, thanks so much for sending me and Dana an update on Katherine's health. You both have been in my thoughts & prayers daily!
I'm posting this so other lymies can send their good wishes and comments to you both.
I removed all home emails and phone nos....
Katherine, I had so been hoping/praying that your blood clot issue would dissolve and leave your body as quickly as it arrived.
Wow, girl, I can't believe how much you have been through and all those MDs.
I'm so glad to read your getting away from your pcp who doesn't listen & lectures you only about your pain pills! You don't need that on top of everything is happening with your body.
YOU GO DAD! Way to go to Katherine's Dad for speaking up on your behalf; but why is it, ducks only listen to men, and NOT the patient or Mom!
Glad you have been getting good support and good listeners from the other drs. you discussed.
Wow, that's something on your new pcp to be that his wife is in the infectious disease area! Hope this visit proves to be very BENEFICIAL TO YOU TOMORROW Katherine!
Wow, as you said ... long day tomorrow in hospital testing & then new PCP.
Your poor legs! When I read your descriptions of them both ways; I could feel your pain and anger especially relating to your occupation and how much you miss that dearly!
Sandi, been wondering about your Mom who was diagnosed lately with lyme too and since your car accident!
I take it also that all the new eye specialists again could NOT come up with anything as to why lyme/etc. is robbing you of your precious eyesight.
You light up my days with your forwards and your cute graphics you added to the everyday forwards we all do! You've got such special talent there.
Sandi, also read somewhere lately where you had written a book review of one of the books.
I'm doing well especially after reading about BOTH of your escapades with the ducks! I count my blessings for the good drs. in my life right now!
Katherine, I was so happy to hear you are having a GOOD time with making your journals that you talked about in bed or on the floor! I've seen many of these; my best friend's close friend does this too. Glad you can find a deep graditude doing something that ends up so beautifully and with all the LOVE put into it!
I wish you the best tomorrow working with the blood clot dr. and his coming up with GOOD NEWS FINALLY for you after these last several months.
Lots of hugs & kisses to you both from his lymie, and you'll read many more responses here ok!
Write again when either of you are up to it ok! I always enjoy your emails.....later ladies! Bettyg
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Just want to quickly add that I am praying for the both of you! I am so sorry for the hard time you both are having. I hope you turn the corner soon.
Oh and don't I wish all of us had a Dad like that!! He deserves a big hug. I am impressed.
Best, Karen
Posts: 1856 | From Maine | Registered: Jun 2004
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posted
Prayers headed up for both!! Please keep us posted!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Betty, Tell both that I will add them to my prayers..
Also tell Ice skater that there is a lyme literate eye disease specialist in Lancaster, PA..I think she is in DE so it is doable..
Have someone pm me for info if she needs it..
Posts: 2360 | From SE PA | Registered: Mar 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I will be praying for both of you tonight.
Has Iceskater been on any antibiotics that are known to have the potential to cause eye problems?
I do know one Lyme patient that has significant eye problems from Ketek (yes, I'm one of those that had liver problems from Ketek but I'm not on any crusade against it. I was shocked when I found out it could possibly cause eye issues).
Another friend had temporary eye problems from Plaquenil. I hope this is something reversible.
Please keep us posted. Prayers are going up immediately.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Does Iceskater have headaches or other neurological problems. My kids have a variant of pseudo-tumor cerebri and loss of eyesight is one of the symptoms. Your intracranial pressure increases and causes problems. A spinal tap is done to relieve the pressure and reduce the symptoms.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
up for more well wishes folks...
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bettyg
Unregistered
posted
I got the below update from BLACKBIRDSINGS TONIGHT....
Hey, I am not doing well so this will be quick and a bit brief. i will update more later when I can.
They had trouble getting an IV in my hand to do the test yesterday. They missed and vein started to enlarge and they had to take it out.
The nurse refused to listen to me or my mother about my veins being very small and that I needed a small size needle. [B]
Once she caused me all that agony she went, "Oh, her veins are really small, most people just say that but it's not true. Hers really are..." After all I've been through I do know my needs.
[B]She was told I am on coumadin at least five times. YET she didn't keep strong pressure for at least five minutes when she took the needle out.
Doctor came in and told her to use a small needle AND he even asked her why after he looked at my hand, did she bother trying the large needle.
My mom knows how to start IVs and told the nurse what to do on the second IV so it would work.
Thank goodness my Mom was there to hold me, because it hurt horribly, and the nurse wasn't the best I've had. Mega bruised from that one too. From below my knuckles to my wrist is a BIG .
They prepped me with Prednisone and Benadryl. I am still kinda fussy from the Prednisone and have the munchies.
In less than five minutes of them finishing the test, my face started itching, lips itched, ears itched, tongue itched....my face turned BRIGHT RED.
The nurse tried to say, maybe she just does that. My Mother said NO, she does this when she has an allergic reaction .
I started to have trouble breathing and fortunatly one of the guys that had worked on me during the test came in to check on me, because he had voiced concern when my face started changing color and appearently I acted
He got the doctor and they gave me IV Benadryl and I could suddenly see clearly, breathe and talk normally (had been getting hoarse), etc.
They kept me for an hour and I started having more problems, itching got worse, my sides, etc. They decided to release me because my oxygen levels were normal. My blood pressure was dropping.
They had a nurse take me downstairs in a wheelchair and told her to call somebody immediently if I got worse.
This is after the nurse asked if I was even okay to leave after she saw how red my face was.
We carry several Epi-Pens on us at all times, so we left and decided to stay close to the hospital till my next appointment. Worst scenario would be to use the epi-pen on me and go to the ER. Thank God, nothing worse happened to me.
We got some coffee in me, which tends to help keep my lungs open. Felt really bad.
Got to the new primarys office around 3:30 and didn't leave his office till 7pm .
The office is 45 mins away from our house, and it took an hour to get home.
He suspects I have some lingering Lyme disease and said to talk to lyme specialist about doing a month of IV on a different med.
He also said we would allergy test me for that drug in advance instead of just starting the IV and finding out I have a problem with it. Also, go over co-infections with lyme specialist.
He was happy to hear my syncope has improved drastically with lyme treatment.
When I got to his office my bp was waaaay under 100 with a low pulse.
The nurse was concerned, and they propped me up on the table with a pillow. Was exhausted.
He is getting me to an immunologist and a hematologist.
He is doing some research on adrenals and thyroid stuff and we will go over it in two weeks.
I had made a chart of my abnormal bloodwork and the doctor went over that and said I was right to be VERY concerned about it.
He has to do some more research on some of it, and he is getting me to the appropriate doctors to help deal with it ASAP.
He said my life is at stake and they need to go carefully with whatever they do for me.
It's a good thing my pain management doctor got me to a doctor that seems to take their job seriously .
He listened to me and took it all in and asked questions and really wanted my input.
He was coming to some of the same conclusions I was for stuff that is wrong.
He He wants me to get an bone marrow aspiration. I am anemic and they don't know why. He said this might answer that. He wants to rule out some very serious things via the bone marrow test.
He also said he wanted to send some of the fluid off for a PCR, lyme, etc. but he did say he was aware that changes were very slim to none that lyme would be positive through that.
He said he thought it was worth testing it regardless.
That test scares me VERY badly. He said it hurts, but only for a second and I would likely curse and be okay.
He said he would send me to a compassionate doctor that does tons of these all the time, and somebody that believes in using pain meds and sedating the patient some to help keep me calmer and more comfortable.
I understand now why the test needs to be done, but it just scares me. The tests just get worse and worse each time.
The blood clot is still there, but is doing well. They didn't see any damage.
The doctor who did the test and his staff that worked on me, said that me being so sick for several weeks and being flat out in bed probably saved my arm from damage.
I was forced to rest it, keep it elevated, etc.
The primary we fired today (so glad to have fired him-he wasn't doing his job to say the least) told me to use the arm, lift weights, go jogging because I am young etc. AND that I would likely end up with damage like his elderly patients do, but whatever.
I saw the clot on the screen and it is pretty big still but not as bad. My arm and chest is sore today from the contrast being pushed through...it didn't really go past the clot very much. That combined with the stress of the IV, etc. has really done me in.
The vascular surgeon was horrified to say the least that I was told those things, and it wasn't taken more seriously.
They said me resting it, and going with my gut has truly saved me.
The primary we just fired wanted me to go off the coumadin after a month! I said NO, and he wouldn't listen to me,
my Mother was VERY adament that I would be left on it for at least another month. Last Friday his nurse left a message and said to stop it in two weeks.
The vascular surgeon called TODAY and said I am to be kept on Coumadin for THREE MONTHS from today !
after three months they will re-evaluate and are thinking they want me to take one aspirin a day following the coumadin.
We were a bit horrified that the primary we fired today was SO reckless in clot management .
Thank goodness my Father called the vascular surgeon himself and got me an appointment as fast as he did.
I had asked for a second opinion from the week we knew I had the clot, and the doctor kept saying i didn't need one.
I knew I really needed one, when I couldn't open a door with that arm
Whenever they say they know best and you don't need another opinion RUN!
I can begin to use my arm normally, but am to rest it, elevate and heat if it bothers me and to back off.
I am going to be doing physical therapy/pilates to re-hab that arm, since I haven't used it much since before the PICC line was put in, in May. My gosh, that has been awhile.
They also gave me permission to have that arm and chest area worked on by my massage therapist. So that should help loosen things up too.
The vascular surgeon was going to monitor the coumadin levels until he heard I got a new primary and who it is.
He says he trusts the new primary.
So that is pretty much what is going on right now.
My new primary is supportive of pain management and says they know I need it, and when they figure out what is wrong with me, treat it, than
I won't need the pain meds. So they have no problem with it, and say they trust my pain doctor.
The primary had a long conversation with the pain doctor about my case before I got there.
Oh, the new primary has read up on lyme disease and the controversy etc.
He is going to copy some of the articles for me that he has, that just came out.
He is open to reading anything I bring to him on lyme or anything else.
I am going to talk to him about using Igenex and will bring him their info.
That bone marrow thing worries me, but we have to figure out what is going on.
The doctor said I could think about it till my next appointment, and that we might go to the immunologist before we do the bone marrow thing .
He strongly suspects an immunology problem. If the immunology thing is positive, I don't know if we will go ahead with the bone marrow or not.
This has turned out longer than I thought I would be able to type.
You 2, Sandi and Betty, may update the folks on the forum with what is going on.
Let them know I had an allergic reaction, but made it through and that I finally have a primary that is doing his job.
The new primary was calling the medical center last night when he finished with me, to ask if they could take me sooner due to how badly I am doing.
The doctor said I could think about it till my next appointment, and that we might go to the immunologist before we do the bone marrow thing Thanks! Katherine
PS-The cutest thing happend at the hosptial. Was in an open area with curtains around each bed.
Two young girls were there with their mother to visit their grandmother who was having something done.
The girl was 6 and asked if she could come say hello to me, and the doctor said yes. She was beyound adorable and came and stood by my hospital bed (she had seen the entire IV ordeal).
She said hello and that she was in hospitals alot because her grandmother is sick, so she understands that it can be really tough.
She said she could see that I don't feel well and am in alot of pain, and that she was really sorry this was happening to me and that she hoped something helped me and I started feeling better really soon.
Really warming and the child was more on target than the adults I had to deal with at the hospital.
It was really adorable and very touching, especially since it was by such a young child.
The staff said they are familiar with those children since they are there alot with the grandmother BUT they haven't ever had either of the children ever talk to another patient. BLACKBIRDSINGS.....
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bettyg
Unregistered
posted
Katherine, you'll have to make sure you send this DUCK'S NAME TO TINCUP; she's collecting them for the east coast area!
You knew it was going to be a long day, but for your duck dr. and his nurse to botch things up that much! Goodness gracious.
I felt for you when I read about her using a large needle for your small hand when you requested it.
So glad your Mom was there to keep them straightened out even if they chose not to listen to you but a little to her....frustrating!
Then for you to react because they hadn't checked to see if you'd react to something or not.
We are so LUCKY YOU ARE STILL HERE WITH US ALL!
Boy am I glad you got to a NEW PCP; that he listened, agreed to many things as well as being educated more about lyme disease, and sharing articles with you, etc.
The incompetence of some of those folks in your email to me and now posted above leaves them wide open to lawsuits from what I read especially about the coumadin.
Lymies who have had bone marrow aspirations done, please put a note here so Katherine can read it. She does check this thread daily IF up to it, and can read your experiences here.
Katherine, it just saddens me so much for you to go through all of this, and here at 21+, you have your youth and previous health going for you.
One never knows about this God-awful disease; we pray you can OVERCOME IT ALL, and go on to live a productive QUALITY OF LIFE vs. where you've been this past year.
You'll enjoy this. Today, 2 ladies knocked on our door and told us they had a 2 pm appt. w/hubbie and me. FIRST I'D HEARD OF THIS. Hubbie did say he talked to someone the other day, but they were to CALL first.
Anyway they were from Banks Life Insurance about medicare and long-term disability insurance for HOME HEALTH CARE, etc.
Since I carried in my 3 frozen ice packs & put them on my body, they asked what was wrong with me.
WRONG QUESTION to ask me! I then gave them a 15 minute talking to about what lyme disease is, symptoms, 300 other look alike illnesses, Steere vs. Dr. B 2 theories, and made sure I gave them copies of ALL THE LYME BROCHURES from LDA, etc. I had including Igenex' western blot igm/igg testing!
What's lyme disease? Again, I used it to educate them from my home. I gave them the last of the 100 detailed lyme brochures I first posted about here but that was edited by Ann-Ohio after I posted it.
Katherine, my heartfelt prayers and thoughts headed your way along with hugs/kisses to a very sweet, beautiful young woman who is STILL GOING TO HAVE a chance to return to being an actress and singer! God's carrying you during your darkest days now. Betyg
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Black bird sings... as horrible as this all had been my thoughts are with you. It sounds like finally you've found a doc to take you seriously and is finally working with your best interests in mind.
I sounds like a good find and none too soon. I hope this can now be sorted out quickly and pray for the est possible results. Hang in there, kiddo finally help is coming.
Ice skater, I am still hoping they find some explanation for what's been going on with you, Wish I could be of some help. please know you are in my thoughts and hoping answers are soon in coming.
My very bestt healing thoughts and hugs to you both.
much love, true
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Greetings to Blackbirdsings and Iceskater! I am a fairly new member. I am 20 yrs old and I just wanted to sympathize with you two. Things are going really badly here with me too.
I have been misdiagnosed with every possible thing imaginable for half of my life and finally in March of this year I was diagnosed by a LLMD with Lyme disease, babesia and bartonella.
So I know what you are going through. I am so sorry life has to be so hard for all of us. I am trying my best to hang in there and I hope you will do the same.
Bettyg told me about you two and I would love to keep in touch and find out your stories.
I am praying for you both and I hope to hear from you if you two have the time and/or energy. Best wishes, ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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posted
Hope things are looking UP soon for all of you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
9-1-06, I got an email from BBS early today. I'm going to share it with you all because I know she has made other close friends on this board. Please continue PRAYING FOR BBS; she needs all our healing thoughts/prayers. She's 20 or 21 so life is just beginning for her.
Betty,
Thank you for your emails and PM. Even more endless thank yous for your prayers and support!
We found out from the doctor that he did not think I would make it through the last infection and was very worried . Not the greatest news to hear.
I haven't had much energy since that infection and have continued to have sinus problems and increased pain. Pain increases with infection.
Sinuses have gotten alot worse this week, so the doctor went ahead and put me on an antibiotic. I am doing a nasal spray too, and we had hoped that would get rid of the infection, but my body wasn't able to fight it off with just that.
The decision was made to use antibiotics instead of waiting out of fear that it would progress as it did before and I would end up with a severe respiratory infection.
That would be too much for my body right now. So hopefully this antibiotic will do the trick!
I hope you are doing well and enjoying your summer! It is suddenly much cooler here, due to the hurricane.
The change in temperature was SO fast...from 90s to 60s that it has been a bit much for my body. A bit surprised at that, but I think it's because it changed so fast and not gradually.
I hope I have spaced this, so you can read it. I will email and post when energy allows. I do try to read everyday, even on bad days. I miss some days, but can at least scan some most days. Take care! Blackbirdsings **************************** Bettyg
Ann, I hope this clarifies this. I brought it down from top of post to here so her WHOLE story continues. BG
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