posted
I know we have a success thread. I'd read it several times over! I need more stories today feeling bummed and like there is no hope of ever feeling normal again. There hasnt been much posted in a while here.
With that said, does anyone have stories about friends that got better? Share those as well!
Posts: 342 | From Philadelphia | Registered: Dec 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Jessie,
I'm sorry you're feeling bummed today. I know what you mean when you say you're worried you will never be normal again.
I feel like this sometimes too. The neurological issues are the most frustrating for me.
I don't have any specifics to mention. But do you have a lyme support group in your area?
My group has about 200 people. Only about 20 can make it to the meetings. But of those 20, there's a good 5 who have been well for a while and come to support the sick ones and to organize activism.
It is inspiring to hear their stories. Some of them fought the lyme battle when it was even more controversial.
So if they can succeed, we can too!
I thought a support group would be too much energy, but it is valuable.
Do you have one in your area? It may help you to keep afloat.
Also, have you had some symptoms that have since resolved, or got better?
I know it's hard, but try to focus on the improvements, even if small.
A big hug for you! We'll get there. We'll get normal again Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Improvements that are better for me, and sticking:
Neuro- memory better No longer in a constant state of internal anxiety, which I didn't realize I was in, just felt like my normal.
No longer on an antidepressant.
Exercise on a consistent basis, body stronger.
Clarity- I've had some emotional healing I didn't know I needed-
So, it can get better-------- Hang in there!
P.S. I am still working on a few things, and don't have a magic bullet formula- just an ILADS trained LLMD
and pushing through---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Lyme has been kicking me pretty good from about 2007 when I could barely walk, talk, think and function - took a couple of years after that to diagnose and start treatment.
Thought I had killed it permanently in early 2012 and took an almost 12 months break from Abx thinking that was the end - unfortunately it all came roaring back in 2013.
That quick story aside, I see lots of successes at the moment:
- I finally found a primary care MD that is willing to accept chronic lyme and will work with me and my LLMD to treat it. I am ecstatic beyond belief to get away from my previous PCPs who labelled me as nuts, wacko and generally uninterested in my health unless they could prescribe a pill or get me out of the office in 5 minutes or less.
- Started seeing a Lyme ND (love my previous LLMD MD but needed something more aggressive) and although I have only had one appt, it is awesome - she is willing to consider everything - I have no doubt that we will bring this to an end game.
- Had positive Lyme results via IGeneX come back this month - why is that a success - because I have always been negative via the standard tests all these years (to all my previous M.D.s, take that and shove it!) - sounds weird but having that positive test has really pumped me up since it removes that little voice in my head that says, maybe it isn't...
- All co-infection testing came back negative so that is something good.
- I myself have become open to alternative methods of therapy (I probably am calling myself out a bit, but I wasn't really convinced before) - I bought a rife machine a few months back and have seen some great success in using it - bring it on!
- Have been getting testing results back for things like MTHFR testing and just got my results back from 23andMe - ran those through genetic genie to look at my methyl cycle abnormalities. Although all of this is a lot to read through and understand - it at least makes me realize that treatment success will more than just taking a few pills - it needs to come from more understanding and from a more individualistic treatment.
I know I wrote a lot here - but seeing a lot of the good in-between the haze of everything else. Still a journey to go, but at least the rudder isn't broken any more!
Jessie - it will get better - believing in that is half the battle - sometimes the improvement are so small you don't see them at the time, but when you look over you shoulder you see how far you have come.
Thoughts and prayers to you.
Posts: 118 | From New England | Registered: Apr 2013
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I am currently in remission of two years, although still on abx. I've had relapses before, but I learned I had to treat this whole disease and coinfections aggressively with abx.
It can come back, so you and your doctor should have a maintenance plan, whether doing Byron White herbal formulas, pulsing abx, etc. Consider this for your lifetime.
However, life is enjoyable again, and although I do hate taking pills, there are worse things.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Dr. K's cocktail will get you better. It has worked for all 5 of us, but we still needed parasite treatment. That is the other piece of the puzzle.
posted
Note to everyone here - on the board, we just say the last name initial for Lyme-treating doctors, as well as the state they're in. Anyone is free to pm someone, if you want to know more about a specific doctor.
Posts: 13116 | From San Francisco | Registered: May 2006
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feeling bummed and like there is no hope of ever feeling normal again. There hasnt been much posted in a while here. 
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