posted
Hi! I haven't been feeling well since 3/10-started with strange headaches,floaters in left eye, eye twitching, ear pain, palpitations, had facial tingling briefly on one side. Now have swollen lymph nodes all over, slight sore throat. Saw LLD in NJ. He drew more lyme related labs--all negative. He did start me on Doryx. Eye twitching and palpitations have subsided greatly. Headaches are gone. Lymph nodes still enlarged. I guess that is what I am most concerned about. Going to Infectious Disease MD next week. Anyone have any thoughts???
Posts: 19 | From pennsylvania | Registered: Jul 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
The infectious disease MD will probably treat the +'s as a false positive. No kidding these guys are crazy in keeping to the IDS Lyme Disease Standards of Care.
41 is a flagella marker (not only the lyme spirochete bacteria has flagella to move around).
18 is one of the eight known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands). A LLMD would tell you this is all one needs to confirm a clinical diagnosis. Your body would not be producing this antibody if the underlying bacteria isn't there.
Also if you didn't have the WB done at Igenex it excludes testing for bands 31, 34 and 83 (3 of the known 8).
Now I'm extremely biased against infectious disease MD's as we relied on one for almost 5 months with our daughter. His statement "I know Lyme and your daughter doesn't have Lyme Disease" is etched in my memory.
She tested positive for 30 and 41 with indeterminate readings on 34 and 39.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Thanks for responding. So sorry to hear about your daughter. That is what my PCP said to me (also a personal friend)- he said if I had lyme I would be so much sicker and unable to function. It really is defeating to have someone tell you that you/loved one is fine when you know that is not the case! Anyway, I truly hope your daugther is feeling better.
Posts: 19 | From pennsylvania | Registered: Jul 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
How long will the LLMD keep you on the Doryx?
You might have been exposed to Lyme, and just have been fighting it off fairly well. It is a good sign that the Doryx helped.
My advice to you would be to see if the LLMD will continue to prescribe Doryx until your swollen lymph nodes are better. Then stay on it for 4 weeks past that point to be extra sure. If your body is positively responding to the antibiotic, I would take advantage of that fact by continuing on it until you are no longer seeing progress from it.
You want to knock out everything now, not have to deal with lingering symptoms later on because you stopped the antibiotic too early.
That would be how you could be completely sure all the "possible" (since we really don't know if you have it or not) Lyme was taken care of.
The swollen lymph nodes could be from a coinfection like Bartonella.....Doryx "kind of" treats bartonella.....so if it gets better on the Doryx, great....if not, you may want to try adding something like Rifampin to the Doryx.
I wouldn't bother bringing any of that up to the Infectious Disease guy, he will look at you like you are crazy. The LLMD is the one you want to talk to about all this. If it were me, I'd skip the ID all together. They will say the Doryx you took already took care of any infections.
It is good that the Doryx has helped so much, but if you can, stay on it a little longer to be completely sure all infections are wiped out. Hopefully if you are honest with the LLMD and tell him/her your concerns, they will prescribe for another month or two of it.
Just take probiotics 3 hours after each antibiotic dose....no dairy or supplements like multi vitamins within 3 hours of the Doryx, for best effectiveness.
If you take Rifampin, be aware it interacts with many other things, like other drugs and grapefruit juice.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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janet thomas
Frequent Contributor (1K+ posts)
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Save yourself time & money and skip the ID doc.
Sounds like Bart and Lyme, and Babesia usualy rides along. Negative tests mean nothing. Stick with the LLMD and ask about the sore throat which may be Bartonella.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Also, my sore throat was caused by malfunctioning adrenal glands. Got on isocort and it fixed it right up then got permanently better after treatment.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
thanks so much for all your replies. seriously considering cancelling with ID doc. everyone seems to agree that it would be a waste of time. Hope you all feel well:)
Posts: 19 | From pennsylvania | Registered: Jul 2010
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