I'm almost a year into treatment for Lyme, with less time spent on bartonella. I have made some progress, mainly in cardiac symptoms, but I'm still in really bad shape. I do appreciate the progress, just wish it wasn't so slow.
I'd love to hear from other slow-goers who ultimately improved. What percentage of improvement did you get in the first year? How about the months and years after that? What were the turning points?
Posted by Geneal (Member # 10375) on :
That is a good question. Unfortunately as everyone is different, a hard one.
I am 20 months into treating for Lyme, bart and babesia.
I guess at the one year point I was kind of hoping to be close to remission.
However, now I just take each day as it comes.
The length of probable treatment time isn't something I focus on anymore.
Many people on this board have treated for much longer, but with good results.
At the one year point, although well away from being "normal",
I wrote down all the things that had improved.
I was really amazed to see that I had made progress, although slowly.
My suggestion to you is to do the same.
Read the success stories for added encouragement.
You will get there. No one can tell you when.
I am on my 3rd run of babesia treatment.
Will probably have to tackle bart again also.
Then really go after the Lyme.
I just try to focus on the light at the end of the tunnel,
Instead of the tunnel itself.
Hang in there. Think of it this way.
One year down.
That's one year less of needed treatment.
Hugs,
Geneal
Posted by ByronSBell 2007 (Member # 11496) on :
A hard question to answer....
It depends on,
1.How long you have been infected 2.What else you are infected with 3.What treatment you are taking and how powerful
After switching to a new LLMD, she found that I had bartonella, mycoplasma, vasculitus, mono virus, HV6, strep virus, ect.....
These are things that were keeping me from gettin well that I never thought I would have had... and some I had checked for but justused the wrong tests.
Now I know what I am facing, and know what is needed to get better.
Posted by Gert (Member # 13584) on :
Good Question - I am only 6 months into treatment. I feel just as bad today as I did many years ago but a couple of my symptoms have been lessened (like my heart palpitations - still there but less often and bladder issues are getting better).
I was hoping for better results this early in the game. Guess I am asking for a bit too much.
Been infected at least 15 years but I think that could be even much longer. Ho Hum Posted by cjnelson (Member # 12928) on :
I am at 8 mos dx - 7 mos treating....
i see a lot of improvements but still no where near the end.
i have had a few days that were very good but mostly several hours at a time...especially the morning hours. afternoon hits and bam, i go back down again, but this IS progress!
i too had hoped that i would be further along in this and get frustrated but i also remember just how bad i was and that helps me a lot.
i periodically will go back and read success stories as suggested by Geneal - great thing to do i also remember that those with success are NOT typically posting or visiting here and that gives me a lot of hope too
think about it, we typically ahve what 30-50 people logged on this site and there are well over 14000 members. that gives me great encouragement
i alwasy look at newbie member numbers and watch how many are logged in and that helps me
!!!!there is magic in these numbers!!!!!
as long as i keep paying attention to it!
Posted by onthemend (Member # 13454) on :
I'm 15 months and miles better in some ways, kind of stuck in the mud in others.
At least I have my life back - that's everything.
I did notice in the Under Our Skin movie that the person I related to most as far as our cases go, was the forest ranger. Of course I'm spacing on his name now! He said he felt great -an amazing difference - at the three year mark.
I kinda had two years in my mind as an outer limit.
Now, as with other posters above, I just accept I'm in it for as long as it takes. And just happy to be receiving treatment.
Very hard to be patient. But that's the job description.
Best -
otm
Posted by tickssuck (Member # 15388) on :
quote:And just happy to be receiving treatment.
quote: Very hard to be patient. But that's the job description.
That just says it all for me!
Posted by CherylSue (Member # 13077) on :
It has been said that for every year that you had the illness untreated, figure 3 months of aggressive treatment.
Those that are newly infected usually get better the quickest.
So, it depends on how long untreated, and how many coinfections you have, and what medicines are targeting those infections, and how well you tolerate abx.
Alternative methods can work as an adjunct, but basically, I've heard, that you really some abx to knock out the infection or get it reduced to tolerable levels for your immune system to take over.
This is a marathon, not a sprint, unfortunately. It may take a couple years.
Hanging in there.
CherylSue
Posted by tic chick (Member # 9156) on :
Thanks CherylSue.
I am looking at another 5+ years according to your info.
At least I know what to expect, right?
Tic
Posted by Vermont_Lymie (Member # 9780) on :
How much you can expect at one year really depends, like Byron said, on how long you have been ill, your symptoms, your physical state and age, treatment, etc.
When I started treatment, I thought I could write some sort of triumphant post here on lymenet after a year of tx, like "How I Beat Severe Late-Stage Neuroborreliosis in One Year." You know, share the great success story with everyone.
I felt pretty awful at the 12-month mark, so postponed my "Mission Accomplished" post.
The first year was pretty up and down, rough at times but some quick undeniable progress too.
Approaching the second year anniversary of starting treatment, I am working full-time and am much better in some ways, but still have some troublesome symptoms and some bad days.
I'm not complaining, I am thrilled with the progress that I made. I now think that the more intensive tx (antibiotics and antimicrobial combos) will last 3-4 years, and then a maintenance protocol, whatever that might be.
With all the information, the best part of the recent New Haven conference was meeting other lyme/TBD survivors who told me they had been through 3-4 years of treatment, and then were able to get off abx and lead full, active and productive lives!
Posted by daise (Member # 13622) on :
Hi LymeCFIDSMCS,
Everyone is different. That's really true. It's hard, sometimes, not to be disgusted with the slow process.
Is there a supplement for patience?
I agree with Geneal. It helps to have stepping stones I can look back on, to see how far I've come--especially in herx.
With that, enjoy the day!
daise Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks everyone, these are really helpful ideas! The one person who has witnessed me most closely this past year has said to me repeatedly that I'm making progress, but it's not always hugely obvious to me because my life is still crap!
So I think taking note of every improvement is a great idea. And also remembering that everyone is as anxious as I am to get better, and that I'm not going to be some exception to the rule just because I want to be (who doesn't?).
Posted by yanivnaced (Member # 13212) on :
From what I've seen on these boards, if after 12 to 18 months of treatment you are not in remission, then you're probably out of luck (sorry to be that blunt but that's the overwhelming evidence that I've seen).
Posted by daise (Member # 13622) on :
Hi yanivnaced,
That's not true. There is no evidence that says 12-18 months of treatment--and that's it for everyone.
Treatment for many with chronic Lyme needs to go beyond 12-18 months. Sometimes well beyond ...
For many, at that point of 12-18 months, they're still very much in the midst of treatment.
That's from patients.
daise Posted by ldfighter (Member # 9405) on :
Agree with daise, from personal experience and also experience of others I know. If you've been very ill for a long while before diagnosis, treatment may take a long time with continued improvement along the way. I was a wreck at one year but had distinct signs of improvement to keep me going. Have improved a great deal since then. Takes a lot of patience. Hang in there.
Posted by shoney (Member # 9925) on :
I started treatment 3 months after bite for bart/babs and lyme. At the 1 year mark, I was still very sick. October will be my 2 year mark-I'm doing much better now-I am more or less functional. I can walk 2-3 miles now, my POTS was so bad in the beginning I could barely walk to the bathroom. I am on month 19 treatment. i didn't start "turning around" until month 16.
Posted by yanivnaced (Member # 13212) on :
Sorry I guess my comment was not accurate. It's amazing though how long it can take to finally start tipping the scales in one's favor.
Posted by tailz (Member # 10014) on :
If you're electrosensitive and happen to live in a home with a high magnetic field due to cell phone towers or power lines, expect to take longer to recover. Bacteria respond to the magnetics.
Also, if your doctors put you on steroids, then refused you any antibiotics whatsoever, and watched you wither away to the point of a 'malnutrition' diagnosis, expect to grow old with Lyme.
I think I'm relapsing, and I don't know I'll ever be cured. They wasted too much time.
Posted by InADaze (Member # 7711) on :
CherylSue,
Where did you hear about 3 months per year infected? If that's true, I need 63 months of treatment!? Does this include the first treatment, or does it start over again when you relapse?
I'm three month's shy of 3 years treatment this go around. If first round doesn't count, I have 2.5 more years Ack, That would mean I do have to sell my house and move before I run out of money.
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