ABX TAKEN: I've been on abx since September 2005: IV Clindamycin (900mg), Zithromax (500 mg), 5 days of Rocephin (2grams), Ketek, Suprax, Plaquenil.
IMPROVEMENTS: All have been temporary: better sleep, take 2 steps, urinary frequency diminished.
How long until you saw permanent improvements?
Thanks. Looking to make sense of my lack of progress...
Posted by WildCondor (Member # 434) on :
Hi Sak,
Well, everybody is different! It depends how long you have been sick? if you have been sick 20 years then expect to be in the treatment phase for many years. You must treat any co-infections as well.
It depends how sick you are, what your symptoms are/were before you started treatment, and if you have any other factors concerning your health. Everybody's immune system is different, and there is no standard of care for Lyme disease treatment.
Your protocol will have to be individualized, and adjusted as time goes on. Do not expect to see results after only a few months. I was sick for 10 years before I even began treatment. It took me 1 year to get out of bed for small increments, 2 years to be able to drive again, 3 years to function independently, and 4 years to do anything else considered "normal" and fun!
It takes time, and the more you arm yourself with information, and educate yourself the better. You have to be as pro-active as possible and keep on top of every little detail of your treatment. Eat right, exercise, take your meds and probiotics...all of it must be done in harmony.
Email me with any specific treatment questions etc. Best of luck, and Hang in there! Posted by Ms. Myoclonus (Member # 6750) on :
Here's my stats:
sick 6 years in treatment 1 1/2 years so far became twice as sick after starting treatment 6 months of treatment before I saw real improvement 1 year of treatment before I felt mildly functional Currently 90% functional and improving every week!
Hang in there!
Take care, Ms. Myo
Posted by AZURE WISH (Member # 804) on :
Lyme for how long? Since sept 1987 (about 18.5 yrs)
ABX TAKEN: A whole heck of Alot (too many to list)
IMPROVEMENTS: Some but I still have a long way to go. Some symptoms less intense but now I have some new ones.
(Although I think I prefer the new ones )
How long until you saw permanent improvements? Don't know if they are permanant yet.... I have gotten worse before -
and I am not talking about herxing.
Posted by 5dana8 (Member # 7935) on :
sick 20 years
3 years extensive treatment
I am much Better with a ways to go.
I have gotten much worse over the years before I got better.
It takes time and patience.
Time I have... patience I need more of.
Hang in there Posted by Andie333 (Member # 7370) on :
I was sick at least 9 years prior to positive test results and official diagnosis.
I started treatment in June, 2005. I was on 2000 mg Ceftin. For the first two months, I felt twice as bad as I had prior to going on the antibiotics, but thankfully, I'd been told to expect that.
Began noticing a bit of improvement in the third month with slow but steady improvement each subsequent month.
Six months into treatment, I was dx with Bartonella and began taking rifampin in addition to the Ceftin.
Now, at 9 months, progressing again. I can see improvements each day, but there are days when it's two-step-forward-one-step-back. What's heartening to me is that a number of symptoms have disappeared completely.
I'm certainly driving. I work parttime and have started walking a little each day. My hair has begun growing back, and I can feel my hope growing.
Andie
Posted by Nal (Member # 6801) on :
I have been sick for about 7 years. In treatment for a little over a year. Haven't really had any improvements yet. Im still working on it though!
nancy
Posted by humanbeing (Member # 8572) on :
Sick 4 years,
Started treatment Three and a half months ago, doxy, tetra, biaxin.
Horrible first two and a half months of treatment. Now I have pretty good days.
Can smile again, walk a mile, work a little, think more clearly, depression has lifted.
One day at a time.
Posted by Lymetoo (Member # 743) on :
Had Lyme for 42 yrs until being dxd nearly 6 yrs ago.
Took at least one yr before I began to see improvement. Two yrs before I felt noticeably better and was able to function at a decent level.
Did abx continually for more than 4 yrs. Off more than on for the past yr and a half.
Took most everything except ketek.
Babesia too.
Make sure you're TREATED for babesia, regardless of testing.
Posted by iceskater (Member # 8655) on :
Was bit and had lyme and coinfections about 14 months , asymptomatic until symptoms developed and treated. Some things a little bit better, somethings have not responded. My strains neurological and virulent.
On the positive side: I did not die. I still can walk and talk. cognitive ability is intact. living with parents who are helping me. I am here on this board, every day that I have a better day to share what I know from my biology and nursing background and what I can read about ticks to help others. I ask others for information that I can continue to improve stay positive and help others.
Issues remain; chronic fatigue, peripheral neuropathies and eyesight. Starting new protocols.
Important to remember TBD are different animals. They operate in a different time frame than other diseases and treatments. Monitor your symptoms. The most important focus is to stay focused and work hard to improve. Stay strong and keep taking baby steps. Each person time frame varies, but, we all can make it. Fight on my friend!!!
Posted by suki444 (Member # 4261) on :
Lyme for how long? 17 yrs
ABX TAKEN: I've been on abx since May 2003: Zith / Mepron / Artemesia Biaxin, Bactrim, Cipro Ketek (one month) in between short course of Rifampin/ Levaquin
IMPROVEMENTS: Days into the Mepron noticed small improvements inbetween herxing.
4 months in I was no longer bedridden. One year in was working part time. Nowadays I can get pretty functional, even get to the gymn ocassionally but can backslide fast probalby due to Babesia.
I noticed increased stamina after the Ketek but got a serum sickness reaction so had to stop.
How long until you saw permanent improvements? About a year.
Posted by BostonLyme2005 (Member # 7680) on :
Hi,
I was infected in July 2004...Profound fatigue nearly crippled me each and every day, yet I made it to work most days....
Dont ask me how I did it, must have been the grace of God! Had taken Doxy 6 wks after, for 6 wks, helped a great deal, but symptoms returned.
Had 10 days of Amox for Bronchitis, it helped too....Had 10 days of Zith, it helped....
Had 2-3 months of Amox, 1500 mgs a day, it helped too....
Was introduced to my new friend, Tetracycline!
1500 mgs a day...My whole life changed once again....I was picked up and slammed to the ground with herxes....
Some area's did improve though.....
I am now into my 6th month of Tetra and I have had roughly, 15 days were I noticed I am improving.....
Symptoms are still there...Its like this...
Some sympts. fade in and out, some stay the same for awhile, then fade in and out.....
You will get better! Treat Co-Infects!
Posted by HEATHERKISS (Member # 6789) on :
5 weeks I STARTED to feel better. I've been on treatment for 1 yr 4 mo aprox. Sick over 8 yrs.
I've been doing well with orals. So if I had to guess by the way I have been feeling......... optimistically........ 1 1/2 more years.
Posted by D.J. LYME (Member # 8384) on :
sick almost a year,found tick, and started abx right away.
abx: doxy, amoxil, ceftin, tetra, fluconazole
first two months living hell, used to keep the address to my house next to me in bed so i would be able to give it to the EMS when i called, everyday thought i would die.
doxy, for 5months, amoxil, 1month, ceftin, 2 weeks allergic reaction, tetra 2 months, and fluconazole, 1 month.
still have redness in face, heat in face, crazy temps all over the board, weird rash, and burning eyes.
i now work out 5 days a week, have stamina to be out and about almost all day, and am even entertaining the idea of going back to work PT.
have been off abx almost a month to do the fluconazole, and going back on after.
Hopefully this continues, but tommorow could be a whole new situation, i have learned that.Dj
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![[loco]](graemlins/loco.gif)
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with a ways to go.![[group hug]](graemlins/grouphug.gif)