posted
Hi, So I am dealing with dr egos here. Before I seen my GP, My Dermatologist said that the rash I had was erythema-annulare-centrifugum So when I returned to see my dermatologist she wanted to retest the Western Blot because she said after antibotic treatment I should show some IgG strains. I ended my 3 week antibotic course on May 31st and was retested on June 15th I just recieved my results and they are the same. No Igg present. IgM 23 present IgM 41 present I am seeing a LLMD in a few weeks. Wanted to see if anyone with more experience may have some insight. My GP retested me for my RA level because that was at 40 when she ran Western Blot. The retest of RA level was 34 a week after finishing antibiotics. My GP wants to retest western blot in 6 months. (So I'm sure I'll be getting another one in October)
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Such an IgG "hunt" is just bizarre. See second link below for why.
You had a bulls eye rash. You had classic symptoms with that for lyme. You have positive markers. You do not need another lyme test.
You do not need to appease doctors who are not knowledgeable about lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
See the WESTERN BLOT explanation here - regarding how lyme IgM and IgG are very different from other infections. Most doctors are clueless about this.
Also see how even one positive in an otherwise CDC "criteria" test can mean a lot.
Again: you had the classic rash with classic symptoms . . . and key positive markers. You do not need another test.
Glad to see you have an appointment to see a lyme literate MD soon. Learn all you can about lyme but know that you're not going to do that sticking with doctors that are educated in this matter.
To say that any doctor (who is lyme ignorant) wants to retest and so you will, that just is not going to be to your benefit. They have not earned the right to insist on such action and, at this point, I hope you can become independent of them and their backward policies.
You do not have to prove anything to them. And to further rely on them can derail your future.
They are not using proper testing techniques / labs, anyway. You are lucky to get some things to show but realize that most labs just don't do the proper tests. But you do not need another lyme test.
That rash photo, alone, speaks volumes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Okay. So you want to be a professional with Cirque du' soleil.
You go to the neighborhood roller skating rink and ask their coach to tell you all you need to know.
About the same thing as relying on doctors who are not at all educated about lyme to offer you what you need. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
The IgM 23 band is positive - ospC - outer surface protein reaction.
Your GP does not understand Lyme disease. Best to wait to see your LLMD for Lyme care.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Honestly, I am waiting to see my LLMD to get answers. I let the dermatologist test me, since I though that no matter what the outcome it may help "inform" her. (Meaning maybe the next person seeking her care after me may be tested more promptly) Also- I was curious as to what the result would say. Is there any harm in retesting?
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It took me a year and a half after infection to get 1 IGG band.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The harm is that when poor tests are done, or the CDC positive (with their ridiculous criteria) is not achieved . . .
or for any other point that regular doctors will dismiss . . . you are so - so very much more likely to be branded a hypochondriac, not receive even basic support from GP after you see your LLMD
not get proper care from dermatologist because they don't believe you have lyme - they believe just their limited tests and limited notions.
Insurance coverage - to whatever degree you might be able to get - is so much less likely to be there for you if you have a CDC negative test or if a doctor in your chart says you do not have the CDC confirmation of lyme.
And other doctors can prescribe Rx that can be very wrong for someone with lyme.
So, yes, once you have a positive diagnosis - that you know is positive (whether by CDC criteria or not), there is a danger in retesting with terribly inferior methods.
You had the classic rash, classic symptoms and clear markers on the test.
You posted on 14 May, 2015 that you had a bulls eye rash for five weeks - and bunch other rings and red marks all over your abdominal area.
You were given a steroid for a while even after the rash appeared, which can complicate matters. So, clearly, that doctor is not at all lyme literate. Steroids were the worst thing that doctor could have done. I'm not sure how you can trust that doctor with any other decision from here on. I could not.
There is absolutely no reason for repeated test. No reason at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Ok, wow....so I possibly have a chronic infection right now. I can see why the test is cause of so much frustration.
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
posted
how can I post a pic of rash?
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Photo posting, others can answer that.
Your description of it in your first post was very clear. Even if you did not have the rash, and subsequent satellite rashes, your symptoms and the test results are very clear.
It sounds - not just from this thread but from a series of them - that it's difficult to come to terms with this. Absolutely understandable.
My heart goes out to you. Looking for any sign that it could be something else INSTEAD of lyme or that a low dose single antibiotic for 3 weeks took care of it.
The sad fact is that single antibiotics (and the prior steroids) can really cause lyme to become chronic but, usually, it's still just the way lyme often works.
It is very complex. Still, you are addressing this at least in the same season in which it started. Many others had to wait years, or decades.
It's more about how you FEEL, your symptoms, how well you can function. No piece of paper will show that.
So, your path may be shorter (if you are lucky) or it could take months (maybe years). Hopefully, in six months you may be able to have this very much under control. Much depends on the expertise of the LLMD you will see (in July ?).
While this is a brick dropping, it need not be a ton of bricks. Bright side?
There are so many variable, and various options, too. -
[ 06-18-2015, 06:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks for the sympathy. I just want better answers-I'm sure everyone on here has been or is in that situation. The lack of answers is what is not sitting right with me!!!
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
posted
Keebler Is there a way to PM you?
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- bis,
I'm sorry. I just don't have the capacity for communication other than replying to a few posts here and there. Wish I did.
Better if you post your questions for a wider range of people to consider. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
All testing shows is whether you were exposed to Lyme Disease not if it's actually active. Retesting is pointless for that reason.
I think your LLMD will be able to answer your questions. Your other docs don't seem to know much about Lyme Disease. Though the dermatologist might recognize the rash, they are not the ones to treat.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Ok Keebler... Not sure if you sent me this link but someone on the site did... http://thehumansideoflyme.net But the dr I am seeing was mentioned on the dedications So I hope that is a good sign!!
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'd say that's a good sign. Some of their work is familiar to me, still, for a current sense, talk to those around you in the support groups.
And, really, as much as possible, while still being mindful of excellent self care and nutrition now, try to live a life with some routine and "other" focuses & balance . . . include beauty and laughter. Your body needs that. Your mind, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks-great things to include into a daily regiment! I am a very athletic person and barely take medicine unless needed. I have a healty diet already, and eat organic gNO free as much as possible. I do take a multivitamin I will say that I am very interest in learning more about but nutrition, and going natural as much as possible. I know that I will need some prescription meds, but would like the least amount as possible.
Posts: 78 | From Pa | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . . know that I will need some prescription meds, but would like the least amount as possible. . . ." (end quote)
Be very careful with that. The "least amount" can have a very high failure rate where it comes to stealth infections such as lyme. Best not to assign "least" but opt for what is most likely to work.
Until you are properly assessed by a LLMD, it can be very tricky trying to guess on any particular treatment plan that would be individually tailored to your needs.
As for symptom management, I can see turning to nutrients for support where possible, though. -
[ 06-19-2015, 01:54 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Yes, the harm done by retesting - if you come out "negative" they will try to dismiss you even more.
In my case, I had a positive Western Blot through the IGeneX lab, then the rheum sent out for an ELISA test which came back negative and he said, "Good news, you're negative."
When I had no more pain from being on antibiotics, and I was starting to herx! So I blasted him! And then went out and educated his staff, who couldn't walk out on me.
It's a trick they do. Don't fall for it. Lyme-treating doctors will know what to do.
Posts: 13117 | From San Francisco | Registered: May 2006
| 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!
Printer-friendly view of this topic