posted
so last Monday....i saw my LLMD for the second time.....now have positive WB (last Oct) and Babesia duncani (Feb).....had been taking zith/mepron/omnicef/Art for a month......
So last week she increase Mepron due to low levels, pulsed the Art, added Glutathione, stopped omcicef and started Bactrim DS...she feels I have Bart also.....
Saturday I actually had the most 'normal" day that I have had in a while....felt more alert, more energy, kept up with the kids, played outside with them......I thought this is it.....
Sunday was tired again.....now Tuesday I am exhausted again, head feels weird......cant stand this fatigue...........why so good then so bad so quickly????
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Enjoy the good days when you have them. That's how it starts .... you have good hours here and there .... then good days here and there .... then you have more good days than bad days .... then you get well!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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thanks six....I hope so....saturday felt good....I enjoyed my kids we laughed, they played, I enjoyed being outside in the sunshine, I could feel myself planning what we could do over the summer....I actually felt some hope...I hope is continues as you say...I know you are better now so I know it can be done......thanks
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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try not to let the bad days get you down and treasure the good ones. Its gonna be a battle-but the biggest thing for me is to not let the bad days get me too down or I can feel depression grab hold of my brain very easily.
The good days will become more frequent Posts: 594 | From NJ/NY | Registered: Jun 2006
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Yes-try to keep that day in your mind. It helps to look back on the good ones when you are having a bad one.
I try to keep a journal and I am especially good about writing in depth how i feel on the good days so I can read it when I'm low.
This disease is awful-some days I feel like a different person-personality wise and physically, but those days when I feel like me again are so amazing and remind me that its attainable and WILL happen Posts: 594 | From NJ/NY | Registered: Jun 2006
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Getting a glimpse of 'normal' is always a great thing, and I would wager means you've found a treatment that works.
Normal moments will last longer and longer, over time. But give it time, and remember treatment is a roller coaster. You'll have up days, and down days - so don't freak if you have a down day after an up.
Keeping a symptom journal is a great way to look back and see how far you've come.
Keep going and good for you!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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My LLMD gave me great advice: "enjoy your good days but don't get attached to them; when you're having a bad day remember it will not be forever." I will always remember my very first good days - few and far between - when I first got sick, and it is depressing when they are so fleeting. But they can remind you of how good you are going to be - permanently - sometime in the future.
Posts: 360 | From New York | Registered: Oct 2009
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thank you all.....it was just nice to be outside with my kids........fingers crossed for more....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Enjoy them when you have them, I actually hate going to bed the days I have that are good because the next day can be the exact opposite.
posted
Its a crawl to the finish and the finish isn't always how you envision it i.e. "as good as you've ever been" but it's an improvement from your worst days
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Florence, I have had a few "normal days" since Mepron / Zith. I have not added Art but I take something called Cryptoplus. I have been on this for about 3 weeks.
I would be curious to know how you feel when you add the Bactrim DS. If you remember please PM me and let me know. I also still need to treat Bart. Rifampin and levaquin were not too successful.
Congrats on the good day! I notice that I am starting to have more of them Posts: 2232 | From USA | Registered: Aug 2009
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Haley your mailbox is full cant send you a PM.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I agree with the symptom tracking idea. I put a number value for each symptom for each day. Although at first the symptoms the symptoms are still there, I notice that their intensity has decreased.
That encourages me and my doctor can see my progress too. Over the last couple of months some of my symptoms have disappeared, and most of the other things have gotten better to a lesser degree.
My LLMD has said before that some of the symptoms will be the last to disappear. Unfortunately I can't choose which ones!
Also, I do have a journal, and on a good day, I try to right something down to document it. There are moments and sometimes days where I think, wow I'm still me and it feels good!
Then I thank God for the blessing of that normal feeling and for the hope He offers me for the future.
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