posted
I went for my 4 month checkup with my LLMD. It was kinda a depressing appointment. I have not improved at all over these first four months of treatment on oral ABX. He told me on the first appointment he expected me to be a completely different person but I am still the same or a little worse.
I have done ceftin, Biaxin/Plaquinil, now starting Zithromax and will add in Flagyl. Hopefully these next 2 months I will see some improvement or I will have to get a PICC line for 3-6 months which I dont want!
Hopefully zithro and flagyl will do something for me these next 2 months...
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I knew a LD patient who did IV abx for a year and then switched doctors and was put on a different antibiotic (oral) and the new med made her improve. Maybe the latest meds you are on will soon start to work for you.
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ByronSBell 2007
Unregistered
posted
I started to really get sick November of 2005 but noticed something wasn't right a few months prior. So I would say symptomatic for 16-17 months before oral ABX treatment.
Been on orals for 4 months. Struggling with depression lately since my class (been with for 13 years) is graduating and going off to college without me and have lost all my athletic goals.
posted
Byron, That is really difficult to have everyone graduating and leaving for college soon. I feel for ya.
Hang in there, you're a very determined young man and you WILL beat this thing!!
Some abx work for some, others work for others. You never know which combination will work until you try it.
Maybe you will make more progress when you get to the babesia meds.
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Byron, what you said in your last post really broke my heart.
My daughter is about your age. She graduated sitting on our couch. That was a miracle in itself.
But, I had to keep secret from her all the neat plans her classmates had. This would not be the time for her.
She has been on abx since January 2006. She saw some improvement, but then had to start treating for babesia. This has knocked her on her butt.
I'm so sorry you are in this place. My daughter is an actress. She had a timeline planned for where she wanted to be by 19. She has never been able to drive, work, go on a date.
Friends stopped calling her years ago.
Yes...it sucks. But, we have to rely on all the success stories here. There are plenty.
Take care. We know your pain. Four months is just beginning, but you are in a better place if you had never started.
I am so sorry that you haven't made much improvement yet. I really feel what your going through.
I just wanted to let you know that I didn't improve much until I started taking Zithromax and flagyl.
It was a bit rocky in the beginning. I don't know what your symptoms are but I will tell you some things that I don't have anymore..chest pains, vertigo, joint pain, numbness.
I still have some neuro stuff going on that is why I am getting my PICC this week. I am scared, I don't want it, but...I need to try it.
I hope this med combo works well for you. I have set aside alot of my goals while battling this disease. I was not dx'd for 10 years..yikes.
There is a light at the end of this tunnel for you. Your on the right track.
Keep fighting...you will soon be off doing the things you want.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Byron,
You certainly are in a tough place right now.
I was unlucky enough to contract Hepatits A my senior year of High School.
I went the first day of school, then was out for the next 7 weeks!!
Horrible, horrible year.
It is tough being young and so sick....
I did graduate..barely.
I did go on to college.
The semester I was to graduate from college, I had to get my appendix out.
Missed graduating from college...until the next semester.
Horribly disappointing...again.
I guess age has taught me a few things.
There is a time for everything...
God's Time is not always our time.
I may have not gotten where I am the way everybody else did
But I got here....eventually.
Went on to complete my Master's degree.
Just want you to know that good things can still happen for you and they will.
I am hoping and praying that your new round of meds gives you some improvement.
You will get there too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Byron,
Hang in there! In our experience, it often takes longer than 4 months to experience significant benefit. On my first visit to an llmd, they told me to not expect to feel any better until about 6 months or so after beginning treatment with orals.
They were right.
Take care, you will get better!
Posts: 2557 | From home | Registered: Aug 2006
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ByronSBell 2007
Unregistered
posted
where is the best place to get artimisean (spelling?) I am worried I may have babesia since I have no improvement and have some symptoms of babesia. (Sweat alot and easily, feel heat waves or get hot for no reason, chronic headache, nausea, ect.)
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Allergy Research Group has a good artemisinin. I THINK you may be able to find it at www.vitacost.com also.
You need to take it with something like zith.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
If you haven't been treated for babesia, than I would guess that is your problem.
Babesia can make you feel horrible, and you will not get better without adequate babs treatment.
Good luck
Posts: 1603 | From ny | Registered: Aug 2006
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
Stay strong Bryon.You will be back in action before you know it.
You must take care of you,be kind to yourself,give yourself permission to put those dreams on hold,for just a bit!
I pray everyday for all of you young folks.
Go after that Babesia.These folks are right on the money.
Make sure to stay in touch w/ those buddies.You kids today,lucky w/ IM,face book,and a friend a click away!Lyme does suck! I missed all of my daughters' high school days.Lucky me though,she is staying close by for college,we are making up for lost time.
Be strong.No quick cure w/ this mess.Your great spirit will get you well!Hang tough!!!Take advantage of that Home Cookin and care!
Posts: 1076 | Registered: Apr 2003
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hang in there, Bryon. Hubby as been on ABX for 15 months now. It's a long struggle.
Hopefully the flagyl will really help you. It helped hubby's brain fog for awhile.
Are you having many neuro symptoms?
Posts: 1366 | From Southeast | Registered: Sep 2005
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