posted
My daughter has been sick for 8 months. We saw a well-known lyme doctor who thought it was lyme, but the igenex test came back negative (he was suprised as she actually did have lyme back in 1999). She was on doxy for a month with no real improvement in symptoms. Therefore, he does not know whether she has lyme or not. He has taken her off the doxy to see what happens. She has had immediate symptoms, but I don't know whether to ascribe this to lyme or something else. Has anyone else been in this situation? Did you have immediate symptoms and if so, what were they?
Posts: 9 | From connecticut | Registered: Oct 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Have you tested your daughter for HHV-6, EBV and Chlamydia Pneumonia (Cpn)? The symptoms are similar to lyme.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Are you sure you saw a LLMD? Most lyme docs know and realize that if you've had lyme before and treated it, you either did not treat it long enough or you were in remission, but it has come back out due to your immune system not being able to fight it off any longer.
I'm also curious as to the positive bands you had on the IGeneX? Just because it's negative, does not mean you have no positive bands.
Like Timaca said, I would also test for viruses and other things like that.
But it happens MANY times where someone is found out to have lyme, treated, then stops treatment and gets sick years later from it again.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
We have one of the best lyme doctors in the country.
She tested positive for only one band of the igenex test, but since she definitely did have lyme 10 years ago, he said that only shows that even the best of lyme tests is not reliable.
He wanted her to go off doxy to see what her body's reaction would be. She has definitely had something going on almost immediately, so again my question is whether this particular reaction to being off doxy is something that any of you have experienced.
Posts: 9 | From connecticut | Registered: Oct 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
who is your llmd?
just reply w initial
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I am not questioning the competence of the doctor. I believe he is considering my daughter's skepticism about having lyme by not pushing a diagnosis on her and by reacting conservatively. His reaction is to say "OK, if we are not sure, I will not continue to treat you. Instead, let's take you off the doxy and see".
So she is off. And she is having some strong symptoms.
My question is: is this because the doxy was working? Is this due to something else going on in her? Has this happened to someone else?
Posts: 9 | From connecticut | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
*Usually* when symptoms return immediately after discontinuing abx it points to a co-infection according to Dr.b and his guidelines.
Has your daughter been tested for the other TBI's including viral issues as Timica has suggested?
These could be issues especially if your daughter was treated for Lyme only in the past.
Hope this helps, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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adamm
Unregistered
posted
Not so sure you saw a good Lyme doctor. There is a massive scientific fraud being perpetrated by a handful of lyme "authorities," with the doctors who get "official" commendation on their treatment of the disease being ones who deal with it in the worst way possible. Lyme is incurable, and a month of doxy doesn't often make much of a dent in the symptoms of someone with disseminated infection.
Go to lymeinfo.net and lymecryme.com for the truth.
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tickbattler
Unregistered
posted
I am surprised your LLMD put so much weight in the Igenex test. I would question whether he is one of the best in the country, as I have heard from arguably the best pediatric LLMD in the country (Dr. J) that the tests are merely supportive and cannot be relied on as a diagnostic tool. The diagnosis is a clinical diagnosis.
Dr. J has treated my children with negative Igenex tests and they are improving.
If your child had lyme before, and has an increase in symptoms when discontinuing treatment, if it were me, I would err on the side of treating for lyme for more than just a month. I would also do extensive coinfection testing through several different labs to see if anything comes up.
Dr. J told me that lyme cannot be properly treated if the coinfections are not treated first.
I guess if I were in your shoes, I would get a second opinion from a different LLMD.
posted
I think it is good that this LLMDs isn't jumping to the conclusion that it is lyme. Wouldn't it be a shame if it were something else and we wasted months/years pursuing lyme. We don't know what her symptoms are which could also be part of why he isn't quick to say it is lyme. So, what are her symptoms?
Considering it has been 10 years, it can certainly be something else that is ailing her. Of course it could be lyme creeping back BUT, most LLMDs don't believe stopping antibiotics will cause an immediate set-back when it comes to lyme.
Posts: 561 | From mass | Registered: Jul 2007
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posted
her symptoms have been many....and have not been going on for 10 years, instead 8 months. 10 years ago (when she was nine years old) she had lyme. we caught it early.she was treated and we thought that was it.
last fall she had mono. in april she came down with baffling symptoms- livedo reticularis, tingling all over, occasional night sweats and lymph node swelling, tinnitus, hives, facial flushing.
In september, she started cognitive problems (poor concentration, memory, a difficulty reading) and then stomach bloating. i may also mention that 8 months ago she was also diagnosed with hypothyroid.
we have been to many doctors-neurologists and rheumatologists, mainly.
this lyme doctor is NOT putting a lot of faith in the test. as I have mentioned, he says the fact that she did not test positive is evidence that the test is not accurate, since we know she did have lyme 10 years ago.
however, since she did not feel noticeably better on the doxy AND the test came back negative AND she doesn't believe it is lyme, he took her off the doxy to see how her body would react.
she is sick. headache, stiff neck, stiff back, nausea, fatigue, dizziness, knees and legs aching. this happened immediately-she went off doxy on thursday and this began occuring on friday.
so, why? does she have lyme and this kind of proves it? what else would give her lyme symptoms within hours of removing the antibiotic?
i have heard great things about our doctor. he was the head of the ilads organization. he travels around the country giving lectures. he testified in front of our attorney general.
Posts: 9 | From connecticut | Registered: Oct 2008
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posted
There are a lot of other diseases and conditions that mimic lyme symptoms. It could be lyme but based on what you've described, it may not be lyme. If it were me, I'd certainly want to explore other conditions BUT would look to get her back on doxy in the interim since she responded to it. An example of another disease that can mimic lyme and respond to doxy is brucella.
I am sending you a PM about an infectious disease doctor who is literally unbelievable when it comes to ruling out other diseases. My first appt. with her she drew at least 15 vials of blood and checked me for probably 40-50 different diseases....some very, very rare.....this was after I spent 18 months with endless doctors and came to my appt. with a thick medical record. Not my top pick of docs to treat chronic lyme but certainly someone you want involved in your daughter's case to help make a differential diagnosis.
posted
Your daughter is definitely seeing one of the best LLMD's in the country.
I cannot speak for him whatsoever, but all lyme physicians need to be careful with their treatment. I know this doctor to be beyond thorough in making sure that other issues aren't in play before deciding that lyme is the problem, which is the way it should be.
A good doctor is not going to push treatment on anyone who doesn't want it and is going to be very conservative in regards to treatment so as to not leave themselves open to litigation.
My guess is that the increase in symptoms after your daughter has gone off the doxy is that lyme is definitely an issue.
Sending the best to you and your daughter. Posts: 237 | From Rhode Island | Registered: Jan 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I did not improve that much after 4 months on antibiotics, so my LLMD treated me for Babesia and within 2 weeks I started feeling so much better.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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