This is topic one year of tx and still feeling bad - encouragement? in forum General Support at LymeNet Flash.

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Posted by Aimee (Member # 20946) on :
Just a little down. Been at this for a year now and really, not feeling anywhere near as good as I had hoped I would by now.

I have lyme, babs and bart.

Currently on Rifampin, Mepron,Zithromax, Plaquenil, Amoxicillin.

Also Florastor, Probiotic, Vitamin D, B-12, Potassium, Magnesium, Omega 3, and Prevacid.

Had a few stops and starts in the beginning due to drug allergies but have been hitting Bart hard since October with Rifampin.

Babs we started attacking in January with Mepron/Zith.

Lyme has largely been left untreated since early on as the other infections were causing alot of trouble. But have begun treatment recently for this.

Added Plaquenil back in February and Amox in April to start to address the Lyme and have felt absolutely rotten ever since. I am hoping this is a good thing and the lyme is being fought.

Honestly though I am just discouraged. Something about that one year mark, I had such high hopes. It is defeating to still feel much like I did in the beginning. Wondering if I am really making progress...

I can see some improvements. The killer headaches and crushing fatigue are gone but only to be replaced by other symptoms.

I still have the following symptoms. Wondering when you all started to see improvement - grasping for some hope here...

Mild headache
Mild fatigue
Numbness/tingling in face, hands, feet
Air hunger
Mild joint pain
Irregular periods
Chest discomfort
PVC's - irregular beats
Very poor sleep
Muscle Twitching
GI upset/pain (not yeast)

Any encouraging thoughts? Depressed today.

Posted by massman (Member # 18116) on :
What are you doing for detox ?
Posted by Aimee (Member # 20946) on :
I do take Milk Thistle for liver support and make sure to drink lots of water every day. Still learning about detox - any advice appreciated and would still like to hear about others who still felt bad after a year a tx and when things seemed to turn around.

Posted by blinkie (Member # 14470) on :
Keep the faith. It's a tough road, but I think everyone can get back to better health. I'm 2.5 years in and am finally hitting the right things so that I have at least somewhat of a life now.

You have to knock down a lot of infections, get your immune system working again and rebuild your damaged cells. It's a long road. Sometimes, to see the most improvement, you just habe to hit on the right combos for the strains of infection you have.

I got a lot of improvement recently for bart and by treating parasites.
Posted by BoxerMom (Member # 25251) on :
Hang in there, Aimee. In Lyme, we measure our progress in years, not weeks or months. Even though you still feel horrible at one year, you have made significant progress in reducing your pathogen load.

I was still miserable at the one year mark. And hopeless. And sick of it all.

But at 15 months, I was well enough to take a long weekend off antibiotics and fly to a wedding. At 22 months, I got six weeks off antibiotics and felt almost normal.

Now, at 25 months, I still herx, but my symptoms are pretty minimal. I'm hoping to be done with antibiotics some time this year.

You will get through this! We're all different, but many patients consider year two or three to be the time frame for significant improvement.

Keep on keepin' on...

Posted by Sick Tick (Member # 23003) on :
It is a long road to wellness, but it is attainable.

I was one of the lucky ones, in that I knew I had tick exposure, was taken seriously in the ER, and began treatment less than 48 hours into my illness. Now, we all know that A. this disease is NOT easily treated if caught early as they want us to believe, and B. since it was a non-LLMD who started the treatment, it was woefully inadequate. Still, I did not expect the disease to disseminate and wind up with neuro Lyme.

But I did. And, even with the early treatment, it was several months of illness before I really felt like it was nearly over. I will be "celebrating" my one year anniversary of illness on May 31, and the only issue I still have is a very minor fullness and buzzing head and not all day....I am told it is most likely NOT continuing Lyme infection, but possibly from lingering inflammation/damage from it or the Rocky Mountain Spotted Fever I also had. Or...sinuses!

My point...the recovery is long and can be miserable....but it happens!!! Many days, I felt like I would NEVER be what I had been prior to the disease....but this weekend, I mucked out my horse and goat pens-very heavy work...and I feel like every bit of my strength is back! I could NOT have done this even 3-4 months ago.

Hang onto the hope.....wishing you speedy progress!
Posted by sutherngrl (Member # 16270) on :
I too was still very ill 1 year in and extremely discouraged. I actually didn't feel that I had made hardly any improvement at that point.

Now I'm exactly 2 years in this month and feel about 20% better just in the last couple of months.

I think getting my vitamin D up in the upper range of normal is making me feel a little better.

Try not to let yourself get too down. If you are even slightly better, then that is a positive thing. It means you are on the right track.

Hope you feel better and better!
Posted by LightAtTheEnd (Member # 24065) on :
Hey Sick Tick! Glad to hear you are doing that much better.

Aimee, I am rapidly approaching the one-year anniversary of my tick bite in a couple of weeks, and it looms like a depressing milestone. I have got it in my head that passing a year will turn it from a temporary illness to a chronic one. But really, it's just a day like any other. Don't put too much importance on the one year mark. If you're doing the best you can and making forward progress, then you're going to beat it sooner or later.

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