posted
Well, just as everyone forewarned, all the results were NEGATIVE. So ... can I be relieved, happy? Guess not because I still have unexplained symptoms and a swollen knuckle joint that no one has explained!! The NP's "nurse" suggested I follow-up with my pcp ... DUH! Well, she (pcp) won't be back in the office until next week and I know she is booked 'til Mid-July. So, in the meantime I continue my 10 day course of abx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
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posted
Lyme Disease is a "clinical" diagnosis! Do you have an appt with a LLMD(lyme literate medical doctor)?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What test, what lab? Probably an ELISA. Not a good test.
You still need a LLMD. Soon. You had a rash at the bite site, from a recent bite (5 weeks ago?) and swollen joint . . . other symptoms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
Excerpts:
* " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
* `` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
* ". . . 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..."
* . . . Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Be sure to read the entire article at link above.
posted
I don't know what company did the test but I did ask them to mail me the results. I made myself get out of bed today and vacuumed my house and did quite a bit of general cleaning. I just am sick and tired of being in bed all day for 2 days. Now I'm achy again and the reality that something is still not "right" is hitting me hard.
I do have an appt. with a LLMD for the 30th of July so at least I have that to be hopeful about.
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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littlebit27
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posted
I tested neg through a mainstream lab-it was mayo clinic. But tested Igenex positive. With important bands IND. So I would definitely see an LLMD. Glad you have an appt.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A note about the vacuum. Since you are on antibiotics, the noise level that can cause hearing damage is less than usual. Be sure to wear ear plugs if you vacuum again, or even if around that. Hopefully, you can find someone else to vacuum as that is one of the most energy-sappy chores.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I've tested negative on 2 tests which my dr. says are basically useless. After working a season on a tree farm on far eastern L.I (where I'm from) I became very sick and got all the lymes' symptoms.
Because i didn't get the positive confirmation that i was looking for i spent alot of money and stress having a million tests run. basically, through a process of elimination i have come to the conclusion that I had in the very beginning, Lymes disease.
Although you cannot discount other causes for your problem, your negative lymes test is not worth the paper it's printed on, IMO.
Read stories on here and all over the web about people who test negative for years and get sicker only to finally test positve when they have reached the late stages of the disease.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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quote:Originally posted by TN Kim: Well, I now feel bad since vacuuming this morning but I am determined to still live as normally as I can when I can.
That is a very wise thing to do .. if you can! Don't overdo though either. Keep on living!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Kim, Correct me if I'm wrong, but didn't you say you had a ring rash around a known tick bite location?
If SO, just THAT is sufficient confirmation of (early) Lyme disease... even by CDC standards... in which case, 10 days is WOEFULLY too short a course of doxy!
You cannot & SHOULD not just "wait" until July 30th to be re-evaluated. Big Mistake. Especially considering the fact that you "feel something is just not right". I've BEEN there.
Go over All the current symptoms- & that skimpy 10-day 'script' with the LLMD receptionist... or better yet, the nurse there. You NEED to be on a longer course to slow any *potential* Lyme infection down.
(But maybe I'm recalling your case wrong?)
-------------------- I'm not a Doc... but I play golf!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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quote:Originally posted by 'Kete-tracker: Kim, Correct me if I'm wrong, but didn't you say you had a ring rash around a known tick bite location?
If SO, just THAT is sufficient confirmation of (early) Lyme disease... even by CDC standards... in which case, 10 days is WOEFULLY too short a course of doxy!
You cannot & SHOULD not just "wait" until July 30th to be re-evaluated. Big Mistake. Especially considering the fact that you "feel something is just not right". I've BEEN there.
Go over All the current symptoms- & that skimpy 10-day 'script' with the LLMD receptionist... or better yet, the nurse there. You NEED to be on a longer course to slow any *potential* Lyme infection down.
(But maybe I'm recalling your case wrong?)
-------------------- I'm not a Doc... but I play golf!
I posted a pic of what my bite looks like now. I never gave it much attention at the time it was itchy and new as my 9 week old grandbaby had just passed away suddenly from SIDS and I just assumed it was a mosquito bite. I know it didn't have anything big and obvious around it but other than that, I really can't remember except that it did itch and take a while to heal up. The center sort of was hollowed out from the bite and left a scar when it healed. I will try to post another pic to this reply.
*I REMOVED THE PIC OF MY BITE AS IT WAS HUGE* ;o)
This is my swollen finger joint that literally just popped up one day and has not gone back down!
[ 07-02-2010, 08:14 PM: Message edited by: TN Kim ]
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
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posted
I've seen LLMDs' offices to this very thing... extend the patient's (usually 14 day) course of abx, after a short visit with the office RN (req'd by law), until the patient can get in to see the LLMD... especially when there was a known tick bite, rash and the patient lives in an area where Lyme's a problem! Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
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posted
hmmm... well... the pics don't really show any "erythra migrans", as it's officially called I guess I'd have to say 'inconclusive'.
Still give the LLMD's office a ring, at a 'good' time & go over the symptoms (excluding any possibly caused by the doxy... i.e: sour tummy after dose, soft stools) & ask if tbheyn're comfortbatbel with just the 10 day course you were put on.
Keep any mineral supp's.. and Dairy... atleast 2 hrs away from your doxy doses! (It would "tie up" some of the medicine) And Stay out of the Sun while you're on any 'cycline drug! (You probably already know this.) Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
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posted
"erythema migrans" My bad.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Tricky Tickey
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Member # 26546
posted
Gosh Kim...I didn't know you'd get your test results back so fast. Seems like it would have shown positive for at least 1 band. Well, you have an appt with a LLMD now. Thank goodness. My appt. is in 5 days. Glory be.....
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- The first photo you posted of the rash was much brighter. Be sure to save that and show it to your LLMD. It was questionable, even if not the classic bulls eye. Not all lyme rashes are bulls eyes and they do fade, so just because it did not stay red means very little.
If you could get into earlier to a doctor who would help, that would be best, too, to hold you over until your LLMD appt. in 4 weeks.
Do NOT let anyone pop that cyst. It's best not to irritate it.
posted
As far as the picture is concerned: the original bite place that scarred over is just to the right of my thumb ... but if you look below my thumb in the very bottom left of the picture you will see another place that appeared a few days ago that looks red / rashy that had no explanation.
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Keebler
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posted
- The rash can appear ANYWHERE on the body, though, it need not be at the bite site. When it appears soon after a bite (or even a few weeks later), even elsewhere, it is highly suspect - especially along with other classic lyme symptoms.
I've had up to 13 "Satellite rashes" (that were silver dollar-sized bulls eyes) at one time - years after becoming infected (when I started on doxycycline). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- By the way, just for future reference, if you post more photos, the large ones can take the thread very wide. Same with very long links but there are none that long here.
I think most of us can work around it for now but just for future reference, if a thread "goes wide" from a post, just means that was just too much for it to handle. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm sorry about the wide pics! I normally edit them but since I've been in bed I've only been able to use my laptop which doesn't have my editing software on it! I'll try to do better!
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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'Kete-tracker
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posted
ehhh.. that's O.K. Save your energy for the doctors' office visits.
And, Hopefully, you can get to one soon for either an extension (@ old doc's) or new 'script' (LLMD's, from nurse/aide OR poss. a walk-in clinic).
If you're killing off Lyme with that doxy, you WILL be more tired. Your body is busy dealing with all the dead ketes'/pieces... by making anti-bodies & filtering 'em out.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
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posted
- I just meant - just FYI, for future - in case you wondered what happened. We can certainly deal with one thread like this now and then. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I hope you can get to an LLMD soon. I got bitten in TN and got an EM rash (though it didn't look like a bulls eye so I didn't know what it was)
Anyways, I tested neg. through regular labs, but when I tested through IgeneX I came back CDC + ! My little boy, the exact same thing! He is even more CDC + than I am. But Quest and Labcorp came back neg.
Even IgeneX doesn't always come back positive when you have Lyme..that is why it's a clinical diagnosis! My teenager is positive, husband has a few bands and youngest daughter came back completely neg. from IgeneX. But she was diagnosed because of 41+ on IgeneX and 18 + on Labcorp. All other bands neg. Yet she has classic symptoms.
And from what I've heard, the sicker you are the more likely the bands won't show up.. because your body isn't able to make antibodies to even show up on the tests.
Don't feel too bad.. just keep on pushing. *hugs*
-------------------- 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
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posted
TN.. If you get tired of trying to read this wide post... just remove the pics. You do have them posted elsewhere.
Just an FYI.. I'm not saying you should remove them. Your choice.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
You have to be careful with the main stream medical community who follow lock step the IDS diagnosis and treatment guidelines.
With a tick bite but no rash then subsequent flu symptoms they will do the Elisa test.
IF this is negative (never mind the NIH analysis of a 45% false negative rate, i.e. poor sensitivity) they will tell you its not Lyme, never mind what the symptoms are.
My daughter also failed the Western Blot (and good luck obtaining the bands if you didn't request in advance) but when redone had two positive (one a LB specific) and two IND (also LB specific).
Never mind the co infections that mess up the immune system and their testing also has many flaws.
I suggest you take a couple of hours and read and reread Dr. B's Advanced Topics in Lyme Disease.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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