I was diagnosed about 10 months ago after being sick for 2.5 years prior. Typical story. Also had a bit of a false start--the doctor who diagnosed me really didn't deal well with cases that don't resolve quickly/easily. I'm seeing a fairly renowned LLMD now for the past 7 months or so.
It's been slow-going. I was initially so weak and had such trouble handling antibiotics that he just focused on aggressive babesia treatment and also getting me strong enough for more stuff. I did some few months of antibiotics early on, then a 4 month break...I've been on Minocycline now for 7 weeks.
I keep wondering, and have tried to search for the answer...what does recovery look like, or feel like....for those here who have recovered or improved greatly? I know there's no template, because it affects everyone differently. But there is often common ground.
How I mean this....do people see certain symptoms disappear gradually, or a general all-over improvement? Were there any benchmark signs that, looking back, were milestones in the recovery process?
I DO have things that are better. I haven't had nightsweats in a long time--I woke up drenched and ill-feeling for the better part of 2 years prior. My body temperature, having been 2 degrees low for 2 years, is now almost always nearly normal (!). And a number of other things have improved, for certain.
Though I'm flat on my back, sick and in pain (and still scared....I just can't get used to living like this) a lot of the time....I'm more functional than I was 6 months ago.
But I still feel really horrible a lot of the time. Very weak, very shaky. "gonna die" feeling. Dizziness (it's way more than simple dizziness though), severe muscle pain (mainly in legs) and etc...and...
I made a list of things that are better. And looking at it, I would have thought if those things were improved, I'd feel a lot better...but I don't. Don't get me wrong, I'm very happy for the improvements....it's just hard to square those with how horrible I still feel day to day.
So, anyway...to those who are much better...what did it LOOK like for you?
Thanks .
Posts: 322 | From Venice, CA | Registered: Sep 2008
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It was almost a situation where if I wasn't keeping track of my symtoms constantly in a journal, I wouldn't even realize how many of my symptoms were actually going away.
I guess, because I still felt like c--p!
I had many symptoms that would disappear, but then a new symptom I hadn't had before would pop up.
However, for the most part, once a symptom was gone, it generally would never reapper.
This happened over many months until eventually I realized that I was down to very few symptoms and that I felt great!
I hope that make sense.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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posted
yes, Lymers, that is the question I was asking.
I appreciate your response.
I hadn't kept track of symptoms, really, for quite a while.
But when I thought I should sit down and seriously go through what has improved--there were quite a few substantial things.
However, as you say.....I still feel pretty horrible much of the time.
I got over the thinking that one day I would wake up and feel substantially better. "Normal" infections are often like that, and that's part of why Lyme, etc, are so hard to understand rationally.
But I do often wonder if there's a general process people see, an arc, or a cycle.. Thank you so much, and I hope others respond too.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
The recovery came for me in teeeny tiny increments. Months or years into the treatment I could look back and realize that I feel better than I felt 3 months ago.
I very much followed the philosophy of Dr. K. www.klinghardtneurobiology.com "Lyme Disease: A look Beyond Antibiotics", who was my most patient physician and dug me out of a deep hole!
Wishing now I had known about Allergie Immun back then and the fact that I had "silent" allergies (DNA) to many substances I was faced with daily keeping my immune system under constant stress. www.allergie-immun.de (click on English). And to learn more about it, read the thread Allergie Immun Germany here on the board.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree with all of the above.
A few things to know: Each time the doc changes the meds, you can expect to feel worse. But, over time, that worse feeling should go away.
When you get rid of one disease, it causes the other diseases to come to the fore. So, when you are rid of babesiosis, for example, your bartonella will get worse than it ever was. (Can get new bartonella symptoms too!)
So, that's why they say it is 2 steps forward and one back when treating this illness.
But, eventually, 2 forward and one back do get you to the goal.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I hope someday I can tell you Michael. Nowhere near there and in misery the last 3 days from symptoms.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Michael, thanks for asking this question. I have wondered about this myself, and was happy to read some of the replys. They offer good insight as to what to expect.
Posts: 19 | From New York | Registered: Apr 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
You'll know you're on the right track when you start having 'normal moments'. I think that's the best way to describe it. I do recall thinking to myself 'Wow, I feel normal'.
They will come, at first small glimpses, interrupted by lyme moments (months, days, weeks,and hours) and eventually will last longer and longer periods.
It's a slow process, and it's wonderful you can look back and see the improvement. But you will know normal when it happens. It can and it does.
-------------------- 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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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I agree with the above, as I have recovered twice before on my own. The last relapse has stayed for 3 years, but that is getting better with short periods of a few hours when I feel normal. I have been working fulltime for a year.
The gal from the Michigan Lyme ASsn. told me to keep a journal. Compare your progress over time. She said it took her 5 years from wheelchair bound to normal life. The first 3 years were incredibly slow, but she was heartened that she had made some improvements, however small. The last two years went rather quickly.
There, you have it. I hope your recovery is much shorter.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Recovery to normal was slow. It was in looking back that I realized what symptoms were gone .... ie "Wow, it's been a long time since I had night sweats!"
The fatigue was one of the last to lift and that was the one that made me feel so dragged down and sick. It started out lifting for hours at a time, then days at a time. Now I can pretty much count on that I won't wake up fatigued tomorrow (unless I come down with something normal, like a cold).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I've read bits and pieces over time here, but I really appreciate hearing about the process many of you went through.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Nowhere near there and in misery the last 3 days from symptoms.
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