When I got my last test results back the nurse said I had been exposed to Lymes.
When I tried to clarify and said "so you mean I have Lymes disease"
She said no, You've been exposed to Lymes.
Can you have been "exposed" to Lymes and not have it?
Posted by Hoosiers51 (Member # 15759) on :
Do you have symptoms? If so, what symptoms?
If it was IgG positive and you don't have symptoms, you might have fought it off and don't need treatment.
IgM positive means that it's a current infection, and if you have any symptoms, you should get treated.
So you would need to find out from them if the positive was an IgG or IgM positive. Better yet, ask that the results be faxed to you, or to a local printing store like FexEX Kinko's, so you can look at it yourself. Then come back and let us know which "bands" are positive, and if it's IgG or IgM.
You can be exposed and fight it off, and not need treatment......but if you are ill, the infection could still be ongoing, so in that case, treatment could help.
It's Lyme, not Lymes.
So the answer to your question is yes, but please let us know if you have any symptoms of the disease....because that could change things.
Posted by Keebler (Member # 12673) on :
- If the nurse repeated used the term "lymes" - with an "s" - She clearly has not done ANY homework on LYME (no "s"). The experts who have done their homework would never call it the wrong name. An occasional mispronunciation or a Southern accent may slip the "s' in - but, really, anytime a medical person says "lymeS" they usually know nothing about LYME.
That is your first red flag. The second is the reply "no, you been EXPOSED to it" sort of thing.
But, as Hoosiers asks, the number one question is if you are ill or not.
If you are feeling just dandy, able to work (or study) . . . exercise wisely, engage with your family, friends, neighbors and go out and enjoy physical activities - and also still be able to get good meal together, do the dishes, maintain good self-care . . . and then go to work or school with a bounce in your step . . . .
well, if you feel well and can do all that, I say wonderful and you are probably lucky. However, you would still need to keep an eye on your health in case lyme would rev up.
Do you remember a time when you had a bad flu that seemed to drag on and on? Did you EVER have a rash after a tick bite? A bulls eye rash? If so, that is clearly lyme but not everyone gets any kind of rash.
If you have symptoms and wonder if you should see a real lyme specialist, then, YES, you should. And, even if you are well, you should still learn more so you know exactly what to do if lyme ever revs or you get a new bite - or anyone you know has these issues.
This is something everyone should learn all about, anyway. Come back if you have more questions and you will get more answers.
While there are many links here, it is still just a basic introductory set. Please save to your fine for easy reference.
Especially if you are ill, you should also be tested for other tick-borne infections.
IGENEX - details about testing for all tick-borne infections (Co-infections). There are some other good labs but, as with lyme, not all labs are the same or do the right tests.
Tests will also not necessarily be enough. You'd need the eyes, ears, wisdom and experience of a good LLMD to assess you further.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
Chronic Borreliosis Complex and Neuroendocrine System Disorders
- By Carol Fisch, Adjunct Professor Emeritus, Microbiology, Immunology, Parasitology, Proficient in Stealth Pathogens
=======================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
[ 03-29-2010, 06:09 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- kissygoose,
To save others great deal of time - and wondering if you are well or not - or just what educational materials you've previously received, etc. - here are some excerpts from previous threads of yours that will help others tailor their replies to you: ----------
Topic: Looking for a dr. in Central PA -- 17 July, 2009
"I recently was diagnosed with Lyme's disease."
** " . . . Everything started when I found a ** bullseye type rash ** on the back of my leg. . . put on a 21 day antibiotic of Ceftin . . . given no more instructions . . . diagnosed with fibromyalgia over a year ago . . . " (end quotes)
[I see that you got the full set of ``welcome links'' that BettyG used to post and that you were given a LLMD list for your area.]
Topic: Lyme and existing arthritis -- 24 July, 2009
``Can Lyme severely aggravate existing arthritis? . . . have arthritis in a few places, and one place in particular is hurting like it never hurt before. . . .''
== [Many replies explaining that, yes, lyme can cause arthritis - & fibromyalgia.]
I have now had two tests come out positive (according to certain doctors). would it be possible to have 2 false positives over 6 months apart? . . .
. . . I also had a circular rash which ended up abcessing as well as terrible flu like aches and pains when I had the rash 7 months ago . . .
. . . But my pcp refuses to beleive the tests and won't refer me to a specialist for a second opinion (I've gotten names from here when I was tested 7 months ago).
I guess what I'm asking is how are you supposed to read the tests?
. . . On my first test done when I still had the rash my Elisa (sp) was 3.88 and the only bands to come up positive on the Western blot were 41 KD IgG and 41 KD IgM
My most recent test my Elisa was 1.74 with WV reactive bands of 39 KD IgG and 23 KD IgM
Because only one band on each is showing up reactive despite the rash and positive screen and other symptoms my pcp still says negative.
Yet some research I've done says the bands that are positive are significant. . . .
(kissygoose) -
[ 03-29-2010, 05:56 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Your first words at the top of the thread: "This is probably a stupid question . . ."
Well, there are no stupid questions but it appears that the question as to if you might have lyme has been asked and answered many times.
You had an abscessed tick bite, a BULLS EYE RASH, positive tests . . . you have arthritis and fibromyalgia. A too-short course of just one antibiotic (Ceftin) failed . . . .
You don't need more lyme tests, you need a lyme expert.
And, you'll need to be assessed for other tick-borne infections but that is best done with a LLMD in person, first. They will know what to consider.
Were you ever able to actually consult with an ILADS-educated LLMD? You need a doctor who knows what she or he is talking about. You apparently don't have that in your current situation.
Now, I'll switch to the practical. If you absolutely cannot afford a LLMD, be sure to turn over every page - ask your support group for others who may be coming up in the ranks.
Read all you can about what you can do on your own. But if you continue to put your life - yes, your life - in the hands of incompetent medical personnel who are totally ignorant about lyme, you will get no where (or worse, you could get worse).
Even if this is the only doctor you can find, stop paying for ignorance. Would you pay him or his nurse to slash your car tires? That would cause less harm than ignoring active chronic lyme as that is slashing your chances of life itself.
Start reading. Do what you can on your own. This must be taken seriously.
Now, I do hope there is some way you can get the expert advice that you need. I wish you the best of luck as you move ahead in a proactive manner (as I know that is far from easy). Take care. -
[ 03-29-2010, 06:16 PM: Message edited by: Keebler ]
Posted by kissygoose (Member # 21314) on :
Made an appointment with a specialist today.
As far as I know he's a LLMD though not with the ILADS.
Can't get in till May and there are some possible problems with insurance that have to be delt with.
Not sure how I'm going to manage the trip yet either.
I'm trying to take this very seriously. I'm so tired of getting the run around and getting sent from specialist to specialist.
I'm also tired of hurting and having to deal with all the medical issues I do. If I could get it figured out it would be a blessing.
I have been reading up quite a bit, at least of what I can understand and everything seems to point to me having Lyme (my appologies for getting it wrong) though by CDC standards and my pcp I don't if that makes any sense. I'm just so confused.
Posted by Keebler (Member # 12673) on :
- You said: "Made an appointment with a specialist today. As far as I know he's a LLMD though not with the ILADS. " end quote.
Good. Glad to see you being proactive. I am concerned that you may not know enough about this doctor.
If he is not ILADS-educated, you are wasting your money. Now, he may not necessary go by ILADS guidelines but if he is not familiar with ILADS research you simply don't have a chance.
"As far as [you] know he's a LLMD" - how did you find his name? -
[ 03-29-2010, 07:35 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
He was given to me in a list on here when requesting doctors in my state as well as being recommended by someone else I know personally who has Lyme.
Posted by Keebler (Member # 12673) on :
- It's good that you got his name from a list here but, still, call his office and be sure that he is very familiar with the ILADS research. Sometimes, doctors appear on some list and they are not LL at all.
However, since you know someone who has seen him, you can find out more. So, that information is apparently favorable and you have scheduled for May. You can ask about being on the list in case of cancellations.
After double checking for some of his affiliations, you might ask about books or article they might have you read and what they can suggest for the interim. This will tell you more about him, too.
Has this doctor authored any pertinent articles or a book? If so, get it. Read everything you can find that he has written, even if it's not about lyme. This will give you a window into his methods and philosophy.
Can they go ahead and send you any sort of patient self-care protocol now so you can get started on that?
I once traveled 3,000 miles to see whom I though was a LLMD and it turns out he truly understood a lot about lyme but would not treat me more than a few weeks. He said I'd be sick the rest of my life and I would just have to learn to live with it.
I can't believe I made such a mistake. I had read in an article about him that he would treat long-term but somehow that was misinterpreted. Or, maybe by the time I got to him, his methods changed. I thought I did my homework and I was so blindsided I didn't know what to do then.
This would not be the only time I was misled about a doctor. So, that is why I'm so vocal about this.
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