It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-01-2007, 07:08 PM   #1
Member
(female)
 
Join Date: Apr 2006
Location: Eastern US
Posts: 60
gina9871 HB User
Question Can Lyme go dormant?

Hi,
I was dx'd with lyme when I was 20 - after it had progressed into encephalitis & meningitis- so I was hospitalized for 1 week on antibiotics and sent home with oral antibiotics for another couple of weeks. (that was in 1980) In the last couple of years (+) I've developed autoimmune disease but doctors can't pinpoint what variety of AI it is. It looks like seronegative rheumatoid arthritis, looks like lupus, acts like MS, chronic fatigue, I have mild seizures, tachycardia, sjogrens, etc. - but no label other than UCTD. I'm wondering if it has something to do with the Lyme disease since I probably didn't have proper treatment 17 years prior. Can Lyme go dormant for a long time and then start causing problems again?
I'm on methotrexate, prednisone, enbrel, anti-seizure meds, muscle relaxants and have been through numerous specialists.
Now my thryoid seems to be giving out since my cortisol levels are now very low. I've lost 35lbs in the last 6 months, I stay cold all the time, low blood pressure (90/50), low body temp (in low 97 range) only slightly elevated ANA (1:80) but I do have positive C-ANCA which perplexes my rheumatologist - I don't have Wegener's or Lupus. I've been REALLY sick for 2 years now. At times, it's been difficult to walk/climb stairs and at other times, I've battled narcolepsy (which isn't happening right now thank goodness). I've been referred to an endocrinologist recently to do ACTH testing - but of course, the wait to see the endo is 2 months.

My rheumatologist ran a BB lab early on and it was negative - but I understand those tests aren't always reliable.
I may be out of my mind thinking the Lyme could still be in my system after this long. Can anyone put my fears to rest (or not) ?
Thanks for any advice~
Gina

 
Sponsors Lightbulb
   
Old 12-02-2007, 05:24 PM   #2
Junior Member
(female)
 
Join Date: Jan 2007
Location: New York
Posts: 18
april15 HB User
Re: Can Lyme go dormant?

Gina,
I'm in the same boat as you. I have been sick for several years and last year was diagnosed with a "mystery" autoimmune disorder by my rheumy, and my primary doctors is sure it's Lupus, even though I have a negative ANA. I had several tick bites 30 years ago, and vaguely remember a bullseye rash on my big toe, but otherwise did not get sick (that I can remember). So i had no treatment. I also have many of the symptoms ticker listed. It's difficult when the symptoms also apply to so many of the other diseases. I also have two kids who I am worried about. I just want a definitive answer to my problems.

I'm also on prednisone and plaquenil. I have gained so much weight on the prednisone. As if I didn't have enough problems. But prednisone is the only thing that takes away the excruciating pain I had in my muscles.

I hope you get some answers. My doctor dismissed my story of a tick bite and rash 30 years ago, but then again, he probably doesn't know much about Lyme.

 
Old 12-02-2007, 07:26 PM   #3
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Can Lyme go dormant?

Gina and April please know that people who have Lyme should not take steroids. They can make Lyme symptoms worse. I recommend that you speak with your doctors about this. From what I understand, it is not safe to stop them abruptly.

 
Old 12-03-2007, 03:38 PM   #4
Member
(female)
 
Join Date: Apr 2006
Location: Eastern US
Posts: 60
gina9871 HB User
Re: Can Lyme go dormant?

Does anyone know if there are any documented cases of Lyme going dormant for more than 15 years before resurfacing/testing positive again?
BTW- I had my PCP do a Western Blot with a sendout to Ingenix today.
Thanks,
Gina

 
Old 12-04-2007, 03:40 AM   #5
Newbie
(female)
 
Join Date: Nov 2007
Location: pumpkintown, sc, usa
Posts: 9
sonshyn HB User
Re: Can Lyme go dormant?

Gina. So sorry to hear you are probably joining us "lymies". Please know you are in my thoughts and prayers. I wanted to post because the doc you heard about in Huntersville is a GREAT doc. Great practice. They treated my hubby for two years and were suuuch a blessing! He is still able to treat patients, so I would call them if you are in that area. Most doctors who are LLMD (probably all) get brought up on charges. Seems just the thing to do now I guess. But it is a great practicea and they really understand lyme. Words cannot express how encouraging it was to actually find a doctor who knew more than we did! AND what to do about it!

Best to you - keep us updated.

Jo

 
Old 12-04-2007, 07:04 PM   #6
Member
(male)
 
Join Date: Jun 2006
Posts: 59
brimmy HB User
Re: Can Lyme go dormant?

Quote:
Originally Posted by gina9871 View Post
Does anyone know if there are any documented cases of Lyme going dormant for more than 15 years before resurfacing/testing positive again?
BTW- I had my PCP do a Western Blot with a sendout to Ingenix today.
Thanks,
Gina

None of which I am aware. If you were completely asymptomatic for that long then I think it is far more likely this is a new infection, rather than a relapse of the original one. You could very easily have been bitten again sometime within the last few years.

 
Old 12-06-2007, 12:00 PM   #7
Member
(female)
 
Join Date: Apr 2006
Location: Eastern US
Posts: 60
gina9871 HB User
Re: Can Lyme go dormant?

I can't remember any other tick bites, but I know that tick bites can go unnoticed. I was however, bitten by our pet cat just a couple of months before I became ill - the cat was sort-of playing but bit all the way into the vein in my arm and it bled heavily. The cat was a rescue cat that came from a litter of cats that all had some weird neurological problems but ours seemed to be fine- but a few of the other cats from his litter died. We ended up giving our cat away a few months after he bit me because his behavior had changed (not using the litter box any longer) - and my husband just couldn't deal with it. Can lyme be transmitted by a bite from an infected mammal like a cat if the cat were infected? - I thought that I read that you can only be infected by the tick, not from the animal???

Last edited by gina9871; 12-06-2007 at 12:18 PM.

 
Old 12-12-2007, 03:12 AM   #8
Inactive
(male)
 
Join Date: Nov 2004
Location: Hanover PA
Posts: 281
Bill S HB User
Re: Can Lyme go dormant?

Quote:
Originally Posted by gina9871 View Post
I can't remember any other tick bites, but I know that tick bites can go unnoticed. I was however, bitten by our pet cat just a couple of months before I became ill - the cat was sort-of playing but bit all the way into the vein in my arm and it bled heavily. The cat was a rescue cat that came from a litter of cats that all had some weird neurological problems but ours seemed to be fine- but a few of the other cats from his litter died. We ended up giving our cat away a few months after he bit me because his behavior had changed (not using the litter box any longer) - and my husband just couldn't deal with it. Can lyme be transmitted by a bite from an infected mammal like a cat if the cat were infected? - I thought that I read that you can only be infected by the tick, not from the animal???
Good question about the cat bite. Seems to me it's a maybe, since Lymes has been found in all human body fluids. I doubt that there's been any studies done on cats/bites, etc. Maybe you got Bartonella from the bite?

My allergist, upon hearing about my Lymes bout, in great detail, said that he thought the concept of Lymes returning after a long remission was interesting, since he'd heard of a couple cases of tuberculosis coming back after extensive treatment and several years of remission (due to stress most likely). I thought he'd be turned off by my detailed symptoms list and timeline, etc, but he apparently likes complicated cases...

 
Old 12-12-2007, 07:32 AM   #9
Member
(female)
 
Join Date: Apr 2006
Location: Eastern US
Posts: 60
gina9871 HB User
Re: Can Lyme go dormant?

Quote:
Originally Posted by Bill S View Post
Good question about the cat bite. Seems to me it's a maybe, since Lymes has been found in all human body fluids. I doubt that there's been any studies done on cats/bites, etc. Maybe you got Bartonella from the bite?

My allergist, upon hearing about my Lymes bout, in great detail, said that he thought the concept of Lymes returning after a long remission was interesting, since he'd heard of a couple cases of tuberculosis coming back after extensive treatment and several years of remission (due to stress most likely). I thought he'd be turned off by my detailed symptoms list and timeline, etc, but he apparently likes complicated cases...
Hi Bill,
I don't know if that darn cat had anything to do with it but the timing was odd. I doubt it was bartonella since I didn't have any swelling or fever. I have developed arthritis and almost every one of the lyme symptoms, though.
I got a call from my soon-to-be new endocrinologist yesterday that scheduled my first visit for January 18th - they received all of my records from my rheumy and decided that I shouldn't wait that long to be seen and asked me to come in today! It shocked me to have a specialist move my appointment UP - but I'm glad they're seeing me sooner. I should have the results of my lyme tests next week (the labs were taken last week). The endocrinologist is checking today to see if my thyroid has shut down since it appears so.
I'll tell her about my lyme disease of long ago anyway and see what she thinks about it.
Gina

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Vitamin deficiency = Lyme disease? Peyjad Lyme Disease 11 12-17-2009 04:42 AM
Lyme or Meniere's? 2drummersmom Lyme Disease 16 04-14-2009 01:08 PM
Lyme how to test? how to cure and get rid of? Help suggest pls. Binod00 Lyme Disease 4 07-14-2008 03:36 PM
How long can Lyme be dormant until major symptoms arise? Nexis Lyme Disease 5 01-31-2008 09:17 AM
OK heres the letter about Lyme's KeyLyme Lyme Disease 20 08-14-2007 12:10 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



jojo (69), jenj770 (45), tess201 (31), ticker (14), Administrator (11), 6Blues (9), annalisa9397 (7), dganz (5), Katherine777 (5), lala52 (5)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (910), Titchou (859), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 12:22 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!