posted
Char, I asked the same thing privately today to another lymenetter. I hadn't received an email in a long time.
I think BBS is so sick right now she rarely stops by to visit during her good times.
Thanks for thinking about her too! Her nose must really be itching from all our thoughts & prayers. Bettyg
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
As of aug 11th this is the last I heard from an e-mail-
Still resting alot recovering from a cough and still struggling with pain.
Also fighting some yeast issues.
And waiting for the test results from the hostital
keep her in your prayers.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks Dana, Still sending thoughts and prayers. I hope we hear good news soon.
She didn't stop by the LymeChat last night, either. If any of you do hear from blackbird please let her know there are others asking for her and thinking good thoughts, as well.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Thanks for the concern and keeping the prayers coming :-) I just saw this and wanted to let you all know I am surviving.
I have been having ALOT of trouble with pain lately and the edema has been really flaired.
We changed the way we are doing my pain meds and will re-evaluate in a few more days. The pain doctor suggested an IV treatment of lidocaine that I am going to try next month. The change in meds is helping some, but it has only been a day of the change.
When the edema flairs SO much I really have a hard time doing anything at all and am very uncomfortable in general from it. It also makes my pain worse.
I had a yeast overgrowth in my mouth and we treated with diflucan and it has gone away. Had some side effects from other meds, and we are dealing with those this weekend.
I am trying to stop by each day, but hadn't been here in days. My entire week has been rough, and I didn't rest well until Saturday. I am really low on energy and everything is just taking alot of effort these days.
I really need something done for the edema but am getting the feeling it will not get dealt with properly until October, because it seems to be a fairly rare disorder. Lucky me :-(
We are going to consider more IV treatment for lyme and co-infections, but the edema and a few other things need to be dealt with first. My body is too overwhelmed by the edema and immune system not working properly (abnormal CBC still) to really be able to fight off the lyme with meds.
I had to miss my appointment with my LLMD due to being SO sick with bronchitis. Doctor was concerned it was going into phnuemonia, so complete bed rest and many treatments finally got that calmed down. There is no way I would have been able to manage the car trip and not completely have my body crash, etc. Too big of a risk. Waiting for another appointment to open up.
I don't have any really good news at this point. Hoping I will in the coming months. I feel very drained at this point.
The best thing we did was get a good pain management doctor that has worked with other lymies. The doctor is really doing his best to make me comfortable so I can get through this. He has also helped get me into other doctors, since the primary situation was not a good one.
Thank you SOOOO much for all of the prayers and good thoughts. It takes alot to get through these really rough medical spots and I find it very touching and uplifting to find such kind and caring messages from you all :-)
I will try to reply to PMs and emails in the next couple of days. My clot arm is doing better but has been sore for a few days-slows down the time I spend on the computer.
Right now being comfortable and being able to rest is a big help. I keep praying that the edema will resolve and I can be my regular size again. The edema presses on everything and makes for a miserable time. Nothing helps it, so I just have to lay still and wait for it to go calm down.
I will also try to post here once a week or two on how I am doing.
Gonna go get some more rest. I rested ALL day and it doesn't really feel like I have.
Best wishes to all of you!
Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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bettyg
Unregistered
posted
BBS, WELCOME back; we have missed visiting with you. Glad you are making some progress, but it is at baby steps.
Glad you Dad straightened out your other MD, and you got a NEW one working WITH you vs. against you.
Yes, I was wandering how the blood clot was doing and your edema! Glad you mentioned them both.
Fatigue; mine has never been as bad as it is right now since I started the new LLMD/holistic MD's 18 of 22 supplements! I'm like you; slept ALL afternoon, and had another 2 hr. nap before getting on her 11 pm tonight.
So good to read your words again BBS; wishing you the best on a FULL recovery from all the EXTRA stuff you have had to contend with also.
Sending you my love, thoughts, & prayers! Bettyg
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posted
Dear Friend: I wish you stronger days and less pain ahead. You are always in my thoughts and prayers. You know where to find me if you need me. Much Hugs, Skater
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Hey BBS...so good to hear from you! Maybe in all your medical journeys you could squeeze in some time with someone who could work on your lymph system?? That may help the edema.
Hope you're much better VERY soon!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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We tried lymphatic drainage and it made me worse. A combination of other massages helps me some.
The lymphatic person said my lymphatic system was really open and not clogged like other clients she works on.
They think I have a chemical deficiency that is causing the edema. Some possibly thyroid involvement.
Not fun at all. Edema isn't like regular edema and not much seems to help and all the regular things doctors tell patients to do for edema do not help.
Would be nice if there was a supplement that would help, but it doesn't seem like there is. Have to do major meds, etc. to get relief. Waiting on getting to a place that can help me...
Posts: 114 | From USA | Registered: Sep 2005
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