I have been on them for 4 months. Had a couple of days full of energy and the rest have been crummy.

This last week, extreme fatigue, sleep a great deal during the day and at night, aches in areas where I never had aches before, ankles very swollen compared to normal a month ago. And times when my kidneys are really sore.

Have had lyme and coinfections for 15 plus years.

Is there any hope at the end of this tunnel? I think I was feeling better before I started taking abx.

On 1500 flagyl and 1500 biaxin a day.

On a side note, I also often feel that I was better off before I started this treatment. I had headaches, aches & pains, and brain fog, but at least I could function. My LLMD keeps telling me that this path eventually leads to getting well and the other path just leads to getting worse.
 

Steve and tree also have good info to share. Steve.. hang in there. Glad you finally do "see the light". More will come your way.

Brighty.. when you see that first good day... and it will come.... REMEMBER that day and think of it often. That ONE day of relief kept me going. Soon it will be 2 days.. then 4 days.. then a week.

It will be a roller coaster ride.. so DON'T be discouraged when you lose the good days for more bad. The good ones will be back.

The only other thing to add.. from me.. would be to keep in touch with the doctor if it doesn't get better or it is "too much".

Good luck!

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If you get the choice to sit it out or dance...

This situation is not true for everyone, but for a fair number of Lyme sufferers, it is. If you have autoimmune activity with your Lyme, it can be very chronic, for instance. There seem to be a number of factors that affect whether or not the meds work well.

After only 4 months, you are not in this "intractable Lyme" group at all yet. Our LLMD said 18 months minimum, at the very start.

It is true that a lot of us feel worse during treatment, because the bugs are either "stirred up" or "dying off." Sometimes I wish I had just let them lie low, although obviously, for you and all of us, the bacteria were causing enough problems for us to seek treatment.

For people like me (and maybe you, you'll know this after a couple of years) our LLMD says treatment is like Pandora's Box. It lets out a lot of bad stuff that was hiding. And you can't go back, once you've started you have to keep going (he says).

Sorry to be so blunt. I never had the expectation of getting better in 4 months, and I always wonder why some patients hear otherwise.
I wish you luck and good health after a few more months of treatment...
 

I promised myself I'd give it a year and see what happened. Even with the promise, I wanted to give up about month 6. I had increased pain in my legs, hips and feet and was tired of being on all the meds. But I told myself I needed to stick it out for 12 months minimum.

Well, at about month 7, something miraculous happened. People started telling me I looked healthier. It was amazing, especially because the pain and weakness was really bad. But then, the pain and weakness started to get reduced as well.

I'm now on month 15. I'm not cured, but I am so much better than I was. People keep telling me they see a difference, particularly in my face. So give it time, and if you need to, get treatment for the pain and swelling.
 

quote:

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Originally posted by SteveInMinnesota:
My LLMD keeps telling me that this path eventually leads to getting well and the other path just leads to getting worse.

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Good statement! It took a full year before I could tell ANY difference. Hang in there!

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oops!
Lymetutu
 

good luck and try to have patience. I say that today - tomorrow I feel like I don't know who I am. It rots, but there are a few breakthrough moments. I just keep going, take what I have to take and maybe one day wake up and feel like I'm back in my skin where I belong. I've had physical pains that I never had before treatment, bearable but never had, mental stuff, anxiety,...It's unthinkable unless you're going throug it like most of you are. I know treatment does this, but you wonder what's the disease, treatment or maybe just me after so long of having this.

Good health and hope you have some improvement soon.

Cigi
 

I've been on abx, cyst busters and/or other meds and treatments for 12 months now.

I would say last year, when LD came crashing down on me, I was only a 25% capable person. It was so bad that I was not able to do my professional job, and in fact, I just recently lost my job because of LD.

The first 5 months offered zero improvement in my condition. Tried different abx and cyst busters. Did nothing for me.

At about 8-9 months things had started to turn around, slowly. I would say that I was back at 50% capacity after the 9th month. And today, I'm perhaps 75%.

I think a lot of the "feeling better" is also a matter of coming to terms with the disease...you know, becoming "comfortable" and knowledgable and understand how to "handle" Lyme disease and its complications...and realizing that it's NOT just a matter of taking abx.

I attribute the turning point for my improvement to be when it finally dawned on my how complex LD really is and that it can not be treated like most other infections.

At that point I decided to address the disease from all possible sides, while still taking abx.

LD is truly a systemic, whole-body disease. Involving everything from your diet to your emiotional habits to your surrounding living quarters to the general state of your physiological health.

This disease is a real a$$hole.

I have learned, and mind you I am NOT a medical doctor, that you can not treat this disease by just taking abx.

Just taking abx may work for some people though, but my take is that for most people with chronic LD, it takes a heck of a lot more to get cured.

I'm even starting to believe that abx might even be secondary to the whole thing. Of much greater importance is it to start living healthy - diet wise and mentally, and to address other medical problems that many of us have, such as metal poisining, poor lymphatic system, hormononal imbalances, thyroid problems, yeast issues. Not to forget the usual coinfection and mycoplasma suspects.

LD is an opportunistic little sucker...and a real a$$hole at it too.

I know this may sound like stupid and vague advice, but you gotta fight back at it yourself.

FWIW. Not a doc!

Michael
 

My experience tallies with the other responders here. I felt dreadful in the 4th month of my protocol, and started having consistently better days after the 7th month.

Since you've had some good days, I'm assuming you are not having serious reactions to meds, but that always has to be watched for.

Treating aggressively for coinfections and staying on top of yeast has been critical to my recovery. Sauna has been very helpful, and lots of different detox. I drink gallons of tea of all kinds.

 

[This message has been edited by HaplyCarlessdave (edited 14 June 2005).]
 

I look at a year ago when I had many symptoms but was able to get through many days without headaches and fatigue.

Now it's a struggle to find the energy long enough to get one thing at a time done.

I long for a few bright days to return. I should could use one right away.

4 months of abx - you've seen a few good days - good for you!! That means you're going in the right direction.

However, have you done any type of detoxing to give your body a break from the dieoff?

When I read your symptoms from last week, I thought to myself - sounds herxy to me.
An achey liver - yikes - that pretty much says it all. You've become one big toxic waste dump.

Do you use Milk Thistle daily? Have you tried using the foot detox patches? They really do make a difference, and you need to get rid of the garbage in your system to feel better.

I used the patches daily for a year. When I check my symptom log, and I can clearly see my big turnaround was when I started using them.

Hang tough and remember to smile..

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Julie G.
___________
lymeinhell
 

Looking for better days ahead.

bettyg