HealingWell
Search Close Search
☰

Understanding Chronic Lyme

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/3/2014 1:39 PM (GMT 0)
Hi - I am just trying to clarify something just for my own knowledge. Why do so many people end up with chronic lyme - is it because they go misdiagnosed for too long, or is it because lyme symptoms sneak up on them months to a yr or so later after they are bitten when it's too late to completely irradicate the bacteria? Thanks for any input.
Posted 3/3/2014 1:45 PM (GMT 0)
correction - which reason is more prominent?
Posted 3/3/2014 3:13 PM (GMT 0)
My case is more the latter but I would say being misdiagnosed would be the main reason. Most people don't remember being bitten and doctors are not attuned to looking for Lyme symptoms (that's putting it mildly I know).
Posted 3/3/2014 3:43 PM (GMT 0)
Another reason is that often enough, the initial infection encompasses more than one infection. If Lyme is treated initially, the other infections continue to thrive uninhibited because what works for Lyme often does not work for other infections.

As for Lyme, even under CDC guidelines, chronic infection is not resolved with 6 weeks of antibiotics so Lyme continues to proliferate in the body.
Posted 3/3/2014 7:47 PM (GMT 0)
I've had it 15 yrs and just got diagnosed, I don't think many doctors know about it and the testing isn't accurate, so the doctors go by test results instead of treating symptoms. I'm glad I finally found a doctor to diagnose me.

I think we all need to sue the doctor who we went to and never diagnosed and then it went to chronic Lyme.
Posted 3/3/2014 8:48 PM (GMT 0)
I was so incredibly sick before I started treatment, and I've only had it for four months. I honestly can't imagine how anyone could be suffering from it and not knowing what it is for so many years. My heart sincerely goes out to everyone with chronic lyme.
Posted 3/3/2014 9:09 PM (GMT 0)
It's pretty easy to go years and years with it because it has a tendency for symptoms to get bad, then ease off for a while in many. I was first infected with RMSF at the age of 7 - it wasn't recognized as such and I was given a short course of abx that sent it into a chronic form.

By age 8 I was showing symptoms of Bartonella, but no one ever thought about testing me for it- of course this was 42 years ago too.

By age 9 I was showing Lyme arthritis - a late stage symptom - but no one ever thought of testing me for this either.

Like many on this forum, no matter what I symptoms I told my doc's over the years, they brushed it off, looked for other conditions, even yelled at me for not starting their "cure" for me.

No one with these infections gets off easy, unless it's caught before symptoms start and treated appropriately - but with so many doctors playing ostrich and just sticking their head in the sand, that's hard to do!
Posted 3/3/2014 9:13 PM (GMT 0)
Oh, goodness. This is just so aweful. My LLMD is having me take my antibiotics 2 months after my symptoms subside, so I am hoping to God I caught it early enough.
Posted 3/3/2014 9:17 PM (GMT 0)
traveler - by the way, I was concerned about the cyst formation thing, bc I had taken augmentin at the beginning of January to treat a sinus infection before I realized I had Lyme. I am wondering if there is a chance that by doing that I may have driven some of the spirochetes into cyst formation. But don't people sometimes take Flagyl (metronidazole) to break them up, do you know?
Posted 3/3/2014 9:23 PM (GMT 0)
Yes, there are abx that are combined to break open the cyst forms, although I'm not real sure which ones get paired up with which abx other than I know that Amox (augmentin) needs to be taken with Probenecid. One of those things I should have learned, but never did!! blush

But I wouldn't worry too much about the augmentin you took earlier this year - you likely weren't on a high enough dose to actually threaten them and they likely have already converted back even if some did convert.
Posted 3/3/2014 9:31 PM (GMT 0)
Traveler, you are so incredibly knowledgeable AND you have a way of calming me down - THANK YOU
Posted 3/3/2014 11:11 PM (GMT 0)
Awww, golly gee shucks! blush thank you! As I just said to someone else in an email - at least all that time I was sick wasn't wasted time. Because of that, I have an understanding of the impact of these infections and I've had to learn to do some, uhm, shall we say, unorthodox thinking to be able to live with them.

Anyway, we are all in this together, at least until the powers that be get it together and not only get some tests that actually work, but treatments that actually work as well. So it only makes sense to reach out to each other. As my hubby and I now say - do the next right thing. For me, that's helping all who wish my help to overcome symptoms and/or infections.

wink I can't help myself! LOL!!! turn Giggle!!
Posted 3/3/2014 11:13 PM (GMT 0)
Awww, golly gee shucks! blush thank you! I'm so glad that I could be of help!! As I just said to someone else in an email - at least all that time I was sick wasn't wasted time. Because of that, I have an understanding of the impact of these infections and I've had to learn to do some, uhm, shall we say, unorthodox thinking to be able to live with them.

It's all about information. With these infections information really is power. It can help us calm down when nothing else makes sense, and can help us reach our healing.

Anyway, we are all in this together, at least until the powers that be get it together and not only get some tests that actually work, but treatments that actually work as well. So it only makes sense to reach out to each other. As my hubby and I now say - do the next right thing. For me, that's helping all who wish my help to overcome symptoms and/or infections.

wink I can't help myself! LOL!!! turn Giggle!!
Posted 3/4/2014 2:27 AM (GMT 0)
Lyme and co-infections become chronic because they are not treated effectively quickly enough.
Tick researchers who conduct field studies are very careful about avoiding tick bites, but it still happens. However, they know to go into treatment right away, they also know what to treat for because they test the ticks. They've never had a problem according to Dr. Lane whom I've spoken to about this. He has studied Lyme and other tick-borne diseases (including in the field) in California for over 35 years.
✚ New Topic ✚ Reply