Haven't posted for quite sometime except in the looking for Dr. area. I am getting worn out from the worry and the stress from trying to keep up with a daughter and granddaughter with Lyme.
Daughter is now 25 and baby is 3. Moved a few months ago to be closer to LLMD since it was breaking me financially to fly the 3 of us to him every couple of months.
Daughter is VERY ill so she needs to be close to him. Yesterday got a call at nearly the end of my shift at work from Daughter..........she said she passed out 2 times and she was hysterical. She also feels like she has to struggle to breath, and has severe chest pressure and pain.
Got off work, after working 12 hours, drove like a (safe) maniac home over a pass with a 9% downgrade to find her lethargic on the sofa with little one watching a movie. Thank GOD that child likes Barney, Wiggles, Elmo and others!!
I suspect she hyperventilates, not sure, LLMD wants her to see cardio Duck, but we been there done that and tests always come back OK. Guess maybe she needs more extensive testing.
Severe chest pain, have found when she herxes she gets this too...........I AM TIRED of trying to figure out what to do!! As you all know, when having Lyme you are pretty much on your own.
She is now on Tindamax (LLMD said it would kick her butt) Plaquenil, Rocephin IM 5 days a week and all her suppliments. Not sure she takes all her suppliments daily. I think she gets tired of swallowing pills and also is giving up hope of ever getting well.
She has been on ABX since the end of March 2005. Many changes on meds over the past several months. Had a blood test, can't remember what exactly for but it came back saying she had an antibody in her blood preventing her from responding to treatment like other people normally do.
Took little one to CT in Sept. to see our wonderful pediactric angel there. He said she was fixable.....YEAH, she has been having lots of tummy pain. She just lays on the floor and cries and kickes her legs.
Poor baby. Called CT yesterday, they are sayign she has yeast infection, has itchy rash. She is now on Nystantin. Hope it helps her.
I worry constantly about leaving them home alone so I can work. NO work no LLMD or meds!! Have become accostomed to living indoors with a small amount of heat...........that is another story!!
Thanks for letting me vent. I have about had it.
Healing thoughts for everyone.
ICEY
Posted by 5dana8 (Member # 7935) on :
Hi Icey Sorry to hear you are so stressed out. That is alot of worry but it must be good being closer to your LLD.
Air hunger & pressure and or pain in chest are two symptoms of babs.Do they have fever & chills also? What does your LLD say about Babs? I hope you can find some time to relax . I do feel for you & hope your family feels better soon take care
Posted by TerryK (Member # 8552) on :
You are an amazing mom/grandmom! I can't imagine how hard it must be for you to deal with all that you must in order to keep your family in one piece. The difference you are making in the life of your granddaughter and daughter is the difference between the hope of having a normal life and having their lives ruined with endless days of feeling terribly ill.
I'm so sorry that you and your family are forced to deal with such an awful situation. Again, you are an amazing mom/grandmom and I wish there were more like you out there.
Hang in there, it will get better. Terry
Posted by quaicheng (Member # 8392) on :
There are not many certified Angels on earth, but you are one.
Have daughter drink water. Get some vitamin C powder and keep a bottle of it mixed up and handy. I too get the air hunger and it's because chest muscles get full of crap leftover from bacteria die-off. Penty of watre helps, and the C works to neutralize toxins.
quai
Posted by Michelle M (Member # 7200) on :
Hi Ice. I've missed you. Have wondered how things are. I'm so glad you're able to help your daughter and granddaughter. You're a wonder yourself, and so knowledgeable. Are her headaches better?
Sending warm hugs your way...
Michelle
Posted by JavaBeing (Member # 6321) on :
Hi ICE,
After reading your post, I had to sit and pause and add another thank you in prayer for my family who, like you, have been there to help move the obstacles, sit in on doc visits, keep up our moral and boost our spirits and do whatever it takes to help us conquer this disease.
As a lyme patient, it's hard to go through this disease and all the fear and challenges it makes you go through. It's also hard to watch your love ones go through this path with you, we wish none of you had to deal with this either.
But may I say to you, as I say to my own family, thank you for being the person you are, for being there when it feels like we are totally alone and angry or frustrated, even though we know many times you may feel the same way.
We can't express enough what your support and love means to us, and there just is not enough ways to say thank you/we love you from the bottom of our hearts. We are blessed for such people in our lives. You ARE our angels.
Anyway, didn't mean to get on a soapbox here, but I see your journey and frustrations echoed from my own situation and I'm sure others here as well. Just wanted to add my prayers for strength and support for you and your daughter/grandaughter. You are entitled to vent anytime. This road is bumpy to walk on, no matter what side you're on.
Health and healing, JavaBeing
Posted by hopeful123 (Member # 3244) on :
hey ice,
wow! you are really something else! as others have stated, you make the difference between subsistance and having some hope for a brighter tomorrow.
you can come here and vent all you want.
try to take good care of yourself. you'll be in my prayers.
Posted by ICEiam (Member # 7519) on :
Thank you all so much, you give me hope and the strength to keep on going.
Thank you Michelle for the encouraging words. I have missed everyone.......12 and 14 hour work days take it out of me!!! Good thing I enjoy my work! I have been keeping track of the people who write in looking for help in the "looking for Doctors area" if I can help people, that will make it all worth while.
And Dana, thank you for the information, yes, she does have babs, she has been on Mepron and is now on Levequin was on Plaquenil and a host of other meds for her Babs, bart and Lyme, oh yea, and she has Ericholisis (or however you spell it).
Things happen for a reason, I guess maybe I was supposed to educate myself (with the help of all of you) so I can help others find out what is wrong with them.
I pass out information to anyone that wants it and probably even some that don't want it......LOL.
I get frustrated with the people that get false negative results from testing and I KNOW what is wrong with them. They say, NOPE, I don't have it, this test says so. I know two like that right now. It is heart breaking to think they will get so much worse without the treatment they so despertly need.
I wish for you all to get well, hang in there, we will all get through this.........
HUGS
Posted by NP40 (Member # 6711) on :
If she's taking abx and plaquenil add artemisinin to the mix and treat the babs. Levaquin is for bartonella and doxy will take care of the erlichiosis. Sounds like babs is the worse one, so I'd treat that first. If it takes 3,4,5 months whatever, she needs to stay after the babs.
Pound one co-infection, get rid of it and go on to the next. Start with the worse one first. Is she on orals or IV ? If you haven't tried IV, try it. Most I know improved quicker on IV's and orals taken in conjunction. She can get healthy, hang in there.
Our son went from a wheelchair, visual/auditory hallucinations, insomnia, non-stop, severe, unremitting pain 24/7 to a normal sassy teenager. Went almost a year without a full nights sleep. You'll all make it. God Bless.
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