posted
I was just notified by Dr. M in CO that the IGenex labs tests for my Western Blot came back.
The lead nurse called and told me it wasn't good news....she said the test results were pretty 'potent' and much worse than they expected. I'm not real sure what they were expecting...but I told her I was real sick...now she believes me. It took the blood test to convince her I was in bad shape.
She said they'd be doing a PICC Line ...an abx through an IV. I'm so new and ignorant. I'm learning slowly but it's hard. My husband died 2 weeks ago from cancer and I'm still mourning deeply...so this is just one more terrible difficulty.
I feel so alone right now...and I'm scared. I'm so scared. Those are honest feelings..right or wrong. I'm scared.
I have to fly out in early October and was told to book a hotel for 5 days. They want to observe me closely during this time to make sure I can tolerate the treatment.
I'm pretty nervous about it but she said something about the blood/brain barrier and having to give a strong enough medication to permeate the blood/brain barrier (whatever that means..)
I'm not real "bright" right now...my mind is in a fog most of the time, battling depression over the loss of my husband and this monster disease.
I need prayer.
Posts: 47 | From New Mexico | Registered: Jun 2006
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posted
Hey cats!! I've been wondering how you were doing. I'm so sorry to hear that your test was positive...but at least there's a game plan now and you can make progress toward getting well.
I hope you can handle the traveling and such. Will you be able to infuse yourself after the 5 days? Sure hope so!
I will keep you in prayer. This has got to be SOOO hard on you while you are grieving so. Call me anytime, OK?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Big hugs to you catsmeow. I am so sorry for the passing of your husband....so very sorry. I hope and pray that you have some support right now. Do you?
Hugs...Timaca "Be strong and courageous...for the Lord your God goes with you; He will never leave you nor forsake you."
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Catsmeow
I am so very sorry to hear about the loss of your husband
I will keep you in my prayers. And hope time will also help heal your grief.
Its natural to be scared. Keep posting, we are all here for you.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Cats,
I've never been on IV for Lyme but a lot of people here have.
Blood-brain barrier (BBB): Sounds scary but really isn't. Basically it is the brain's defense mechanism so not just anything that happens to get in the bloodstream can get into the actual brain.
Lyme, obviously, has figured how to get past the BBB.
It takes specific antibiotics to get in there (central nervous system). Antibiotics delivered through IV can really get in and saturate the body's cells, cover a lot of area at once.
Some LLMDs use it to get a good hold on the Lyme at first, then go into using oral antibioics.
Please ask for help and support here. And take others up on any offers for help. And take time to grieve. That's important. So sorry for your loss.
Please feel free to PM me if you just need to vent and don't want to post publically.
Is anyone traveling with you to the doc?
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am so sorry to hear of your husband's death.
I hope you are travelling to a doctor who will be very careful to explain everything to you. I've been there, done that, as have lots and lots of people who post here.
IV is not so hard to handle, I think they will train you to do it yourself. Drugs that cross the blood-barrier are usually in the cepholosporin class like Rocephin. They really help.
Just keep in touch here and ask any and all questions you have. People here will help you answer all.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Ah. Here you are.
I think the test results are a good thing and getting the IV Pic Line is also a good thing.
All moving towards the right direction.
I had an IV PIc line for rocephin. It felt it was helping.
Insurance company decided to stop it because my LLMD was not in their network.
I was very thankful for the time I had it because I was noticing a difference in the way my brain was working.
I hope you notice a difference too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam real sorry for your recent loss and I am praying for you catsmeow I hope things only get better and God gives you strength and piece.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Sending big hugs & lots of concern & support!! So, so sorry that you have so much to deal with - all at the same time.
It's natural to be scared, nervous, & feel all alone, so don't feel like it's wrong. As difficult as it is, you will get through it and will be a stronger person for it.
Losing your husband is a big trauma. Treating chronic Lyme disease is a big trauma. Having the two at the same time are especially difficult. But remember, your LymeNet family is here to help you 24/7. Many of us have been through similar circumstances. We'll help you in any way that we can.
I lost my husband last year. Each person's experience is unique, but I understand what you're feeling. I've had to "reprogram" my life. I'm blessed to have children, grandchildren & wonderful friends who have helped me.
IV treatment - Do you have a family member or friend who can travel with you to begin the IV? Having someone there who understands & can support you would be so helpful. Not only will it be emtional support for you, but they can help you remember what you're told about the IV.
In the meantime, try to find time to keep learning about Lyme & IV treatment. Ask any questions that come to mind.
A long time ago, I had a professor who said - "The only dumb question is the one you don't ask."
May you be blessed with the strength you need to get through this.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Dear Cat's- I'm so sorry for your loss...I'll keep you in my prayers. I had a PICC for 5 months- was terrified at first but then got used to it. Just remember to have the docs monitor your liver-mine couldn't take a lot of the antibiotics and then of course I got the yeast so watch your diet too. Good luck and God Bless.
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, dear Cats.
My goodness, you've got a full plate.
I'm so sorry you'll be dealing with grief with a PICC line to attend to. On the upside, it'll be a real distraction. It will also hopefully make you feel a lot more clear-headed than you've been feeling.
It will seem a bit overwhelming at first but I promise you'll have it down in no time at all.
PLEASE take a high quality probiotic like Theralac daily so that yeast does not get an upper hand on you. Ya don't need THAT!
I hope that you have good friends and family to support and help you through these hard times because I know how hard it can be to keep on putting one foot in front of another, even WITHOUT lyme disease, when you lose someone.
Let us help in any way we can, OK?
Hugs to you,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
Cats, my heartfelt sympathies to you on the loss of your beloved husband recently.
Wow, a double whammy of IV too! Ask/call your drs. office asking them to send you a copy of your WESTERN BLOT IGM/IGG blood tests. Post them as time permits, and we will help you. Post only + pluses or INT; NOT MINUSES for each.
I too hope you are blessed with close family/friends living nearby right now when you need it the most!
Otherwise, we're here 24/7 for you too.
I'll attach my sympathy poem collection; I'm sure you will find some to comfort you and possibly a laugh or two.
I'M FREE will be good since he had cancer. ``SYMPATHY'' POEM COLLECTION by Betty Gordon
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