Who else caught it "early" but still treating months to years later?

I started abx 6 weeks after the bite and here I am still riding the ship 2.5 years later. But yes, it has been a roller coaster and I do function. Getting there.

I guess it goes to show that these infections get deeply rooted very quickly.

I got bit on a Saturday and was on Doxy by the next Friday! So, not even a week. I sat and watched as my GP looked up the CDC recommendation for treatment. I actually did two rounds of Doxy, but only at 100 mg per the CDC. At least my GP was smart enough to know it was lyme. I thought it was a spider bite! I had the classic bulls eye rash. Still, here I am one year and 7 months later still treating. At least, I finally found someone who is ILADS trained and is treating me. I'm hopeful to be done and have it "remission" or whatever you want to call it by next December.

My GP now thinks "Your body would of healed from the Lyme by now. It would have taken care of it!" I about choked when he said this!! I learned just to keep my mouth shut. No use arguing with him.

It is even more sad that what to do about Lyme is NOT being taught in the medical schools either. At least not in my state. I had a family friend who graduated from med school probably two years ago tell me that Lyme doesn't exist in my state. So sad!!! It make my blood boil.

I caught it real early. Removed the tick (small nymph) from my groin area. Developed rash within a week and got to my PCP same week as rash developed.

I was immediately put on 200 mg Doxy per day for 30 days. Elisa was positive and WB IgM 23 was detected. No other bands.

I had no noticeable symptoms and thought we caught it. Two and a half years later neuro issues, and joint pain and stiffness started. Bounced from PCP to Neuro to Rheumy for next 2 years before getting myself to an LLMD and started treatment in March 2010.

Getting close to 95% well, and still on ABX pulse with a handful of herbal tinctures and anti-virals.

My llmd who is one of the best has said that some people that begin treatment relatively quickly can be ill for many years and others that went undiagnosed for many years get better in a matter of months.

Everyone's immune system and bodily constitutions are different.

Its brutal. I went 4 years undiagnosed and have been treating for 10 years. I do have low immunoglobulin levels though.

KristenBee said...
I think it has to do a lot with diet, stress, your immune system etc. I'm doing everything right and although I've only been at this 6 months, I also have some stress right now and that definitely hinders your health.

I've been saying the same thing. More ((((hugs)))) girl, to get through this day.

Traveler turned me on do an herb called Avena Sativa, it's made from the 'milk' of oats, the way I understand it.

Anyway, it's been a big help to me calming down-even though it doesn't remove the stress. If I take it in really bad times with hot water, it feels like a warm hug. I think it's one that has to be started on a pretty low dose though. Here's a web site for getting it.

/www.iherb.com/pr/Gaia-Herbs-Certified-Organic-Wild-Oats-Milky-Seed

ETA: I had to click on the "Home" option and type Avena Sativa in the search bar and then look for the tincture. I've not ordered it yet and want to check to make sure it's the right thing first.

Post Edited (julymorning) : 3/16/2017 11:08:57 AM (GMT-6)

sunny40 said...
My llmd who is one of the best has said that some people that begin treatment relatively quickly can be ill for many years and others that went undiagnosed for many years get better in a matter of months.

Everyone's immune system and bodily constitutions are different.

Its brutal. I went 4 years undiagnosed and have been treating for 10 years. I do have low immunoglobulin levels though.

Wow. After ten years, what percent better would you say you are ? Do you work/function?
Herbals or antibiotics ?

You know, part of the problem it seems to me is where the bacteria have hit. Part of the getting better process is no longer having issues any where.

I imagine that some that did get immediate treatment that relapsed, may have had some undetectable damage going on inside that has to be repaired either during or after (the 'bugs' are under control) as part of the healing process. That would definitely prolong the getting well time.

It isn't like that for everyone, I'm sure, I just wouldn't doubt that it could happen in some cases.

Octobrsky13 said...
I also started treatment 6 weeks after a tick bite with monotherapy - just zithro. I had nervous system infection within 2 weeks of the bite. Treated for 2 yrs. and went into remission for just a year before relapsing & retreating for 6 mos. Relapsed again a year later & retreated with zithro/doxy combo & that put me into remission for 12 years.

Not the end of it, though. Six yrs. ago started having symptoms intermittently & relapsed with a vengeance last year. Didn't think it could happen but it did. I'm treating again - improving but it's stubborn.

I thought I was lucky to have been caught early but apparently not. Early treatment in general is supposed to produce better outcomes, though.

Well a 12 year hiatus would be nice. Ignorance is bliss. Glad you are improving again. Perhaps this is the last treatment needed. Using zith again?

Rikky1 said...

Octobrsky13 said...
Well a 12 year hiatus would be nice.

illl take 12 hours ;o)

Lol

So you still had symptoms when you stopped treatment?

Fronton, thanks. Yes I'm pulsing zith/tetra so far and looking to add herbals. When I was treated 24 yrs ago there was no mention of co-infections. And no ILADS.

Now I see a good LLMD & he has other patients that have relapsed after long remissions. Life stresses can bring it back - divorce, grief, other medical issues.

Hope we can all put it behind us for good;)

Octobrsky, as I was reading through this thread, looking at your responses, what came to mind with your symptoms returning each time you were under some kind of stress - that's what I was thinking - a co-infection that wasn't treated properly.

In order to get some stamina back for me, it took focusing on viral treatments - I'm still not there, but it made a huge improvement with my own stamina. I would very much encourage you to look into the other possible infections you may have and be sure that they all get treated well.