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 06-07-2008, 11:51 AM   #1
Newbie
(female)
 
Join Date: Jan 2008
Location: Pineville, LA, USA
Posts: 8
popeyesmeowme HB User
Been treated for Lyme for 3 years, now DX with Lupus.

Hi everyone,

I've been thinking I had Lyme's disease since Dec. '04. My Lyme doctor has treated me very aggresively, including placing a port-a-cath to administer IV meds, and despite 9 months of IV meds I still was not getting better. He finally suggested I been seen at a Diagnosic clinic to make sure something else wasn't going on with me. From that visit I learned that despite having negative ANA panels for the last 5 years, I do in fact have Lupus. More advanced testing was needed to come to that conclusion. Since my DX I've been placed on predisone and within a few days I was feeling much better. My Lyme doctor had come to the conclusion that I had Lyme from a borderline positive, ++ on band 41 and a few others, western blot. I also had very low cd57 readings, 1 and 34 on seperate test. I've wasted over 3 years of my life suffering through all of the pain and side effects of the medicines to no avail. I am a true believer that we do have a Lyme problem going on, but please if you have any doubts at all, get a second opionion.

Best of luck to all of you.

 
Old 06-07-2008, 01:42 PM   #2
Senior Veteran
(female)
 
Join Date: Mar 2004
Posts: 537
datgrlstef HB User
Re: Been treated for Lyme for 3 years, now DX with Lupus.

I'm sorry to hear that you have Lupus. My aunt has it, as well as my sister's friend.

Honestly, I do believe that too many people here assume that one + on a western blot means Lyme. So a newbie posts their results, and of course there's *no doubt* that it's Lyme. Not that it can exclude it, per se.. and I realize that Lyme is supposed to be a clinical diagnosis. However, we know that many of our symptoms ARE similar to other illnesses. There are people who assume that an MS diagnosis must be wrong, because a.) how can a person have Lyme AND MS?; and b.) we know that Lyme mocks MS. (Heck, some reading shows that there are few differences between the two, and there is virtually no way to tell by a lesion on the brain - or by the fluid obtained from a spinal- which a person actually has).

When I was diagnosed with Lyme, I had already been tested for a slew of different things.. as most people here, no doubt including yourself. The first blood test (by a typical lab) showed only one band, and it was negative. My Igenex results were CDC positive. However, even the doctor has said that he didn't think Lyme was the only issue. I went years from infection to diagnosis.. which perhaps explains why after a year of abx, I'm still not much better off. (I haven't done any IV abx, though). I am becoming convinced that Lyme is NOT my only problem. If I want to be retested for Lyme, my dr wants me off meds for 3 months, first. He does not hold any stock in the cd57 test when it comes to Lyme, so he won't use that test on me. He is having me tested for some other things, and has even said he might go the route of anti-virals, and see if they work better. But I am thinking that the abx are actually doing more harm than good (which many would say "well, it's better than suffering from Lyme!"), and could be causing other issues.. or exacerbating something else yet to be diagnosed.

I really do think people should keep their options open, seek second opinions, for sure.. and don't necessarily put all their eggs in one basket. I've read about those who have come to be diagnosed with Lupus (and worse) after having been diagnosed with (and treated for) Lyme.

*Edited to say.. I don't discount any Lyme diagnosis that anybody here has. I'm just saying that we can't assume it is the only thing going on, for at least some of us.

Last edited by datgrlstef; 06-07-2008 at 01:55 PM.

 
Sponsors Lightbulb
   
Old 06-07-2008, 10:50 PM   #3
Senior Veteran
(female)
 
Join Date: Nov 2005
Posts: 634
brid HB User
Re: Been treated for Lyme for 3 years, now DX with Lupus.

hi!! my name is brid, i have been in this forum por some years.. like you, i started to get treated for lyme, i live in south america, i had to travell to see a llmd.. i was in treatment for more than 6 months, and wouldnt feel any better, until i found out i had lupus, i started to get treatment for lupus i am feeling much much much better, i feel normal these days thanks god, my general doctor here in peru, tells me that lupus-lyme symtoms are very similar.. i had an indetermiante lupus test at ignex.. and a positive lupus test in one lab out of 4..at the begginign my doctor and were confuse wether i had lupus or lyme??? but now i am really sure is lupus, because my skin is much much beter, my health too,my dizziness, my body temperature.. my blood pressure, everything,! i am not taking corticoids, the doctor says i dont need it, that my lupus is mild.. i decided not to take inmunosupressors because i believe side effects are actually worst than the disease it self, at least my case.. i just take aspirin and plaquenil and my blood pressure pill and i am soo much better..for 2 years i was a mess, now i have a complete normal life.. i work all the time, i even walk an hour! i couldnt do that for 2 years..sometimes i have the doubt if maybe people than had an indeterminate lyme test and are being treated for lyme and dont get better, if is lupus what they really have...you will be fine with your lupus treatment.. i was scare at the beggining, but now i feel good again.. good luck!!

 
Old 06-08-2008, 01:28 PM   #4
Newbie
(female)
 
Join Date: May 2008
Location: New Hudson, MI, USA
Posts: 5
cwarren25 HB User
Re: Been treated for Lyme for 3 years, now DX with Lupus.

Hello,

I've been on prednisone for years now and I have to say that that drug can make it seem like you're cured almost. Since you're not suppose to be on that drug long term you want to only use it in emergency situations(some people take small maintenance doses). I was diagnosed with Lupus then Dermatomyositis, then my Rheum started to tell me he didn't know why I'd always flare up under 20 mg of pred, my symptoms were starting to not look like DM and I wasn't responding to any of the immunosuppressants they were giving me- we stopped at Cellcept which I am still on. My Rheum didn't hesitate to rule out Lyme when I mentioned it so I am awaiting my results-even if it's just to rule it out.

I'm just saying please be careful with the prednisone. I know it makes you feel better but it tends to just mask the symptoms and not get to the heart of the problem so on a high enogh dose you can feel cured but when you try to lower you find that the problems are still there. Unlike what abx does for people with lyme, prednisone does not do for people with autoimmune diseases which is to attack the main problem. Is your doctor trying other treatments in conjunction? Plaquenil? Methotrexate?

Glad you found the right dx and hopefully I will find the proper one for myself as well. Good luck.

 
Old 06-09-2008, 10:16 AM   #5
Newbie
(female)
 
Join Date: Jan 2008
Location: Pineville, LA, USA
Posts: 8
popeyesmeowme HB User
Re: Been treated for Lyme for 3 years, now DX with Lupus.

I have an appointment with my doctor for the Lupus on Friday and I'm sure he'll want to take me off of the steriods and take a more conservative approach on the treatment. I definately do not want to stay on predisone, I've seen what it can do. My mother also has Lupus and has been treated for around 25 years now. Back then when she started her treatment they were very limited in the options so she's paying the price for that now. It's effected just about every part of her body inside and out.

I do have an appointment with the doctor I have been seeing for the Lyme today. I'm kinda nervous as to how that's gonna "go down".

That was great words of encourgement from y'all knowing I'm not the only one going through this, thanks.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Anyone been treated with TSH below 3?? marie74 Thyroid Disorders 15 10-11-2008 07:24 AM
What if you're treated for Lyme.... but don't actually have it? kdmari Lyme Disease 7 01-06-2008 03:27 AM
My dog has been diagnosed with Lupus! Brandy Lee Lupus 5 04-12-2007 05:35 AM
Diagnosed with M.E for 11 years but haven't been tested for Lyme.. please help.. sleepystardust Lyme Disease 6 07-27-2006 06:13 AM
Has anyone ever been cured of Lyme disease? TICKED-OFF Lyme Disease 13 06-07-2005 10:10 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 (29), ticker (14), Administrator (11), 6Blues (9), annalisa9397 (7), dganz (5), Katherine777 (5), lala52 (5)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (896), Titchou (832), janewhite1 (823), Gabriel (757), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 04:48 AM.



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!