LymeNet Flash: Once it's cured, is it gone for good?

This is topic Once it's cured, is it gone for good? in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/56088

Posted by riverpatrol (Member # 12182) on :

I'm one of the lucky ones: I was diagnosed within 2 months of contracting lyme.

It was a dx that I had to fight for, though. After finally taking myself to the ER of a local renowned university hospital in an attempt to get the best treatment, they told me I had arthritis, take some tylonol and see your doctor.

They made me an appt to see one of their GPs, who also dx'd arthritis and sent me to their rheumotologist.

Lab tests and a visual inspection convinced the rheumatologist that I had rheumatoid arthritis. She gave me an rx for prednisone that she promised would start to alleviate the inflammation right away. She wanted me to start taking it immediately.

Note: I had informed every Dr I saw that I had been exposed to ticks. I got the "Lyme isn't here", or "Lyme doesn't happen west of the Rockie's".

I told her I had another appt the following day with an LLMD, and that I would hold off the prednisone until after that appt - knowing that steroids would greatly hamper my chance of a successful lyme recovery.

My LLMD (a wonderful man!) said that I had diagnosed myself, and that I was far ahead of most others. I told him it's all I can do is search the Internet at night, trying to find a reason for the sudden onset of the crippling illness I had - I certainly couldn't sleep. He started me on abx immediately. He said it's possible I may be on abx for 6 months to a year!

I am on my 2nd week of abx, and feeling worse than before I started. I know, that's how it's supposed to work - you get worse before you get better.

My symptoms started with excruciating pain in the right shoulder: from a noticeable pain to 15+ within 5 hours; then moved to the left shoulder, right big toe, right knee then left knee, right wrist then left wrist. I went from slinging bales of hay and remodelling bedrooms to whimpering in my chair in front of the computer. Only pain at night, hardly any sleep, etc.

My question is: even with a quick dx and treatment, will it really be gone for good? I am afraid that some joint problems, especially the shoulders, may linger or crop up sometime later.

Posted by radfaraf (Member # 11909) on :

I think you got a really good chance of completely getting rid of it being that you got diagnosed much faster than most of us. Your doctor sounds like they know what they are doing since they are willing to admit it make take longer than 2-3 weeks.

Posted by Lymetoo (Member # 743) on :

One can hope!!! Glad you found us!!

Wild Condor's Links and information:
http://www.wildcondor.com/lymelinks.html

Posted by groovy2 (Member # 6304) on :

Hi river

My sister got lyme about 4 years ago and started
ABX with in a week or so of being bit-
she had a big bullseye on her stomic
she took ABX for about 6 weeks --
-- Doxi --400mg a day

She has had no symptoms of lyme --
She lives in PA and has enough money that
doctors will Do what she asks --

If treated early enough-and long enough with
high enough doses of ABX -
most folks will be OK --Jay--

Posted by riverpatrol (Member # 12182) on :

quote:
Originally posted by Lymetoo:
One can hope!!! Glad you found us!!

It's the people and the information provided on this site that convinced me I had lyme, and gave me the determination to seek that dx.

My heart goes out to all of the chronies. I can't imagine the courage you must have to fight and live with this disease. I know there were at least a couple of times while I was writhing in agony on my bed that I considered the .357 in the closet.

Jay - thank you for the hope.

[group hug]

Posted by Vanilla (Member # 11155) on :

If for some reason you do not get rid of it all the way you can probably get the keets to go dormant at least so I bet you will be okay.

May your good health return quickly!

Posted by adamm (Member # 11910) on :

What about babs. and the other co.s? How common are relapses after those appear to have been treated appropriately?

Posted by luvs2ride (Member # 8090) on :

There is no test currently that can say for sure but once you feel better and stay that way, then call it cure and enjoy your life.

I hope you get there real soon!

Posted by sixgoofykids (Member # 11141) on :

quote:
Originally posted by riverpatrol:
I know there were at least a couple of times while I was writhing in agony on my bed that I considered the .357 in the closet.

You might want to put that into a safe deposit box till you've been through a couple herx cycles. [Wink]

I think you have a good chance of getting better. Build your immune system at the same time you're treating the Lyme so it's nice and strong once you're through treatment.

After treatment, eat right, take supplements, so that you keep strong.

I've done this over the years and didn't even know I was sick until I took a turn for the worse after a round of doxy for another illness altogether.

I've had it for 35 years, before the current flare-up, I had three flare-ups that lasted a couple months and went away on their own. I've been healthy most of this time because I take good care of myself. That's what you'll want to do.

Posted by Vermont_Lymie (Member # 9780) on :

Congratulations on catching it so soon! In my opinion, with 6 months to a year of abx and treatment, it sounds like you have a great chance of beating this down -- for good.

Do not forget to read Dr. B's guidelines for lyme treatment.
You should research plaquenil and discuss it with your llmd.
I will start taking it soon as a cyst-buster, and it also has been used to successfully treat lyme-arthritis.

Sixkids has good advice; it really helps to eat well, take supplements, and boost your immune system as much as possible during your treatment. Take care.

Posted by riverpatrol (Member # 12182) on :

quote:
Originally posted by sixgoofykids:

quote:
Originally posted by riverpatrol:
I know there were at least a couple of times while I was writhing in agony on my bed that I considered the .357 in the closet.
You might want to put that into a safe deposit box till you've been through a couple herx cycles.

I know what you mean! Fortunately, since I now know the cause and have an end in sight, it's much easier to handle. I am well into the 2nd week of treatment, and herxing pretty bad. Right now, it's the major inflammation from my thighs to my toes, and the associated muscle cramps that is driving me crazy. Nothing helps and I can barely walk. Makes the other ailments seem minor, even though my hands are so painful I'm typing with one finger. [Frown]

I have been following Dr. B's guidlines pretty closely, and am taking almost every supplement he recommends. I've always been pretty healthy, not into junk food or fast food, just kind of bad about consistent meals.

Thanks for the tip on the plaquenil, I will certainly research this. Anything that could help.

Thanks Again! [Big Grin]

Posted by Ellie K (Member # 12056) on :

I apologize if this sounds pretty ignorant, but I'm a newbie: I'm wondering how common chronic Lyme actually is. [loco]

It's really hard to get sense of this by reading through all of the information posted here. There are many similarities but at the same time, people's stories are so diverse.

Generally speaking, are people w/ chronic Lyme able to work full-time after a period treatment, even if they're not fully functioning? (I certainly can't right now, which is causing a lot of anxiety and despair.)

I guess, in a way, I just want to know what I'm in for so I can prepare myself mentally and emotionally, and financially too, I suppose.

How do you sustain hope while remaining realistic in outlook?

Do you think if you are treated w/n 6 months of your actual infection there is a good chance of becoming fully functioning w/n another 6 months of abx? A year? More?