posted
Hi, Since the immune system may no longer be producing the antibodies they are looking for, would you recommend testing for lyme and co-infections to be done before or after starting treatment?
Anyone with any experiences or knowledge of this would be greatly appreciated!
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey There Beautiful,
Can only tell you from my own experience that I was undiagnosed for at least 18 years. I DID NOT treat at all before testing.
My Western Blot was (9) bands positive on IgM and (2 or 3 )on IgG.
So, for me, I was still producing many antibodies even though I was very late stage.
Good Luck!
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
That's a long time... Sorry to hear you've had to live with this for so long.
Thank you! Good Luck to you as well!
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
posted
Sometimes taking a month's worth of abx will help more antibodies show up on the testing.
I had a negative test, then I took abx for 4 wks, then off for 2 wks, then the Western Blot again, by Igenex.
Still came back officially negative after having lyme at least 42 yrs. But several more bands showed up, including lyme specific ones. Treatment was successful!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
That's a long time...Sorry to hear it's been such a long time that you've had to live with this.
That's good to hear - that at least if tests don't appear to be accurate the first time around, there is still hope.
But I can imagine how frustrating that must be.
That's great that your treatment was successful!
Thank you!
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
I wanted to include a response from Dr. Murakami a retired LLMD,(who consults)from BC.
Murakami Centre for Lyme: Lyme Chat Forum
"There is no absolute test for Lyme disease and the clinical diagnosis is the primary and most important method.
It is better to do the test before starting medications unless it is an emergency that cannot wait.
Coinfections can interfere with the treatment of Lyme disease therefore the wait is advised."
Dr.Murakami,MD,BA Bacteriology,Immunology Clinical Associate Professor Emeritus,UBC
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I tested before abx completely negative, only band 41 present. I've been experiencing mild symptoms since 2004. And if my "spider" bite was my tick bite then that's the year I was bit as well.
One month on abx, and two weeks off, WB came back Igenex pos, CDC neg.
I wonder now what it would show up but I can't afford to get tested again right now.
posted
I was sick for over a year. I can never get IgG and IgM straight, but the one that shows recent infection was positive, the one that shows long term infection was negative (only band 41 was positive).
Posts: 60 | From NJ | Registered: Jun 2010
| IP: Logged |
posted
I was sick 15 years. In all those years the Elisa always came back negative. Last winter, when I started putting this all together, a WB at a commercial lab was negative as were all my co-inf tests. This was prior to lyme treatment. My doc treats symptoms, though, and sees no need to spend money on Igenex, unless I have some personal need to do so, then he'd order it for me if I like.
I haven't tested, again, since starting treatment. So, can't tell you how the treatment will impact results. Once I'm feeling better I may want to test just out of curiosity, but, then again, I probably won't care at that point.
I have felt my immune system "kick in" since starting treatment, though. So, if I were to test, I'd probably want to do it when it seems to be "running high."
Good Luck.
Posts: 252 | From New York | Registered: Apr 2010
| IP: Logged |
posted
Oh, btw, there is a "provocation treatment" that some doctors recommend to optimize testing of kids who may have lyme-induced autism and also recommend to parents of those kids. You may find it helpful.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I agree with what you quoted from Dr. Murakami. He clinically diagnosed me with Lyme after 10 years. He also told me that Lyme will not be treated successfully unless co-infections are dealt with.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
littlebit, that's interesting about your "spider bite".
A coworker of my husband got a spider bite a few weeks ago. She's been very sick ever since and just tested highly positive for lyme thru her regular family doc.
She says she felt the bite, actually 3 bites. They hurt. But she never saw a tick.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
posted
I have had lyme for 20 years. I was CDC IGM positive, but a few bands short of being CDC IGG positive. Which seemed completely crazy to me, but after reading more about lyme, it made sense. The lyme changes form so much, your body thinks it is always fighting a "new" invader.
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
posted
Oh, tested positive right away with no antiboitics previously. However, my doctor did the Igenex WB as my first lyme test.
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I was "sick" for 3 years but had Lyme symptoms for 20 years before getting tested. Below are my IgeneX results... without any antibiotics beforehand. My other kids tested positive as well except for my middle child, age 9. She'd been on prophalactic abx for over a year previously for a kidney/bladder condition and she only came back with two bands. But was clinically diagnosed as late stage neuro Lyme.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
Thank you! for all of your responses - I'm learning alot.
I know you're going through alot...
I hope you see better days ahead
Good Luck!
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
posted
Had it for over 20 years; at 17 years tested "equivocal" and underwent treatment; tested again, had fewer bands 5 years later during a relapse, after 2 months antibiotics had all sorts of bands show up..CDC positive...so it seems the immune system kicked in after the relapse and antibiotic treatment. The bands change all the time depending on the state of the infection and the health of the immune system.
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
posted
Thank you! for your message. I appreciate it. As I learn more, it feels like I'm one step closer - to figuring out what to do next and to healing.
I appreciate hearing everyone's experiences and knowledge on this.
It's upsetting knowing that the government is responsible for this and making it so hard for people to get diagnosed and treated properly.
Anyone who's living a life with lyme, definetly has a strong spirit, especially to be living with it for so long.
I hope you see better days ahead
-------------------- "Everything Will Be Okay In The End. If It's Not Okay, It's Not The End." Posts: 28 | From canada | Registered: Jul 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[spinning smile]](graemlins/spinsmile.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic