posted
well i didnt hear from my so called llmd dr. as of yet, and today is wednesday...he was due back to work on monday that just pass,after him probably looking at my result, he saw that i dont have lyme, but he should have stil call me, and he hasnt call me yet, but i know i have something, weight lost, ringing in the ear,
insomnia, i will have to start juicing my vegetables if i want to live. i am on kefir, thank god for that, and i have to get this yeast and my gut under control so my food will stop coming out in my fetus.i will be seeking out dr. biamonta, the candida dr,here in new york, hopefully i will go on his protocol for yeast, and find some improvement.
i did saw my hematologist, the blood dr, he was the one that found the 41+ bands, when i saw him on febuary 12th, i insist on him doing over the lyme test, he didnt want to, because he said with the 41+ band,i didnt have lyme, you know the story behind that, i pleaded my case, then he agreed to do the lyme test over.
well today... 2/24, i got back the result on the lyme test from the hematologist dr.
the quest diagnostic test was administrated on 2/17....
EVERY LAST ONE OF THE BANDS SAYS
NONREACTIVE...
it read LYME DISEASE AB (IGG),WB NEGATIVE LYME DISEASE INTERP (IGG) NEGATIVE 12,23,28,30,39,41,45,58,66,93 ALL NEGATIVE
LYME DISEASE (IMG) WB NEGATIVE LYME DISEASE INTERP (IGM) NEGITIVE 23,39,41 What happened to the 41+ bands this second time doing the quest test, where did they gone.
my igenex test result is my signature.
ok its time for me to move on, i do not have lyme DISEASE
I WILL look into A CANDIDA DR....DR BIAMONTA... HE CHARGE $240.00 FIRST VISIT...
i know the quest test is not 100 percent any good, but the igenex test also says
igm negative igg negative
this is like beating a dead horse.
some of the supplements that i was taking, i am stopping, on my other blood work some of my normal reading is high,
it has to do with these supplements/pills that i have been on...my urea nitrogen. 28 high range 7-25
creatinine ratio 31 high range 6-22
i have never had these out of range as long as ive been doing blood work,. thats all for now.
bye... time for me to get in touch with the candida man.. bye for now nice people.
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We've been around on this before. Wait for your Igenex tests to come back. You don't have all the details just yet.
Repeating a test -using the wrong methods - will not find the truth. And - Quest does not test all the bands and, besides, a negative test cannot rule out lyme disease.
A negative test cannot rule out lyme disease. Now, you may or may not have lyme. But it's is important not to jump to conclusions - there is more to figure out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Why would you throw in the towel on your LLMD so quickly?
Since you've invested so much money and time in your LLMD - I personally would wait to discuss all this with him.
You sound angry at him when you call him a "so called LLMD dr" - and I don't know if that's the case or not. I'm not up on your story the way some others here might be, so I apologize if I'm encouraging you to stick with a doc that makes you uncomfortable.
LLMDs are amazing diagnosticians, and even if you don't have Lyme - I think a LLMD could still help you get to the root of your problems.
If he's just come back into town, call again and ask for your results - or send an email. He's probably been swamped.
Many of us here were diagnosed clinically - that means with no positive test results. And have improved with Lyme treatment!
Myself, I tested neg through Quest. And through Igenex. BUT - we knew I had Lyme because of a positive DNA test.
(And because I tested positive for other tick-borne diseases, so Lyme was likely.)
So even though the Igenex and Quest tests were negative - they were wrong.
But - if you think the root of your problem is candida - maybe you are right, and this candida doc can help you. I hope so.
I hope that you find the answers you need to get well, whether it's Lyme or something else.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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julielynne4
Unregistered
posted
Oh wow, please don't throw in the towel yet. Igenex said my Lyme was negative, but then I tested positive for three coinfections.
You CERTAINLY should not make a decision based on a blood test.
I have tested negative for lyme EVERY SINGLE TIME with Quest or Labcorps!
LLMDs are busy busy people...and human too...wait and talk to him. Wait and see how many bands were positive or "IND."
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
For my part Quest sucks. My first test said one band unable to identify. That was in 07.
If you did not challenge I would not accept neg until I did for 3 mths. and test at Igenex.
Yes you may have something else, check those out.
But my Quest test and my duck of a doctor made me get sicker for over 2 years because of their ignorance.
If you cannot find anything else and you continue to get sick, don't let that happen to you.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Pinelady,well i did my part, i did the igenex test, and the quest test... if my dr would return the call and tell me what he will be doing, i dont know at this point what to thing...
julielynne4.. on the igenex test 41+ on both igg,igm
then i had 34, 39, 83-98...ALL IND's
keebler..yea we both been through this...
at the office,they treat other things,they suppose to treat candida, but i don't like the PA
method..its not enough... he gave me one week of dulfican, and then tell me to go back on the nystatin after im finish....yakkk
i dont know if to call the office or sit her and wait to see if and when he will call, i called on
monday evening, the girl said, he has my file and was going to call, im still waiting, 2morrow is thursday, is this is how he treat his patients.
i am also treating myself with anti fungal stuffs..
posted
You said: "i know the quest test is not 100 percent any good, but the igenex test also says
igm negative igg negative"
Does this mean that you received the Igenex test results and they also were negative? I'm confused, and not just because of my Lyme fog.
From what I understand the Quest Western Blot is a joke. I was extremely lucky to have 41 KD and 66 KD reactive with Quest. You definitely should wait to get the Igenex results, if you haven't already.
Even if the Igenex results are negative that will not rule out Lyme. The false positive rate for the Western Blot is 3%. I've read that the false negative rate is up to 36%. That means that there's a very good chance that you still have Lyme, even if the WB is negative.
If you have had Lyme for a long term then it is likely that none of your bands will be reactive. Borrelia does an exceptionally good job of hiding from your immune system and less antibodies are produced over time.
Don't give in to the ducks that tell you that a negative test result rules out Lyme. There is immeasurable evidence that that is not true. Dr. B emphasizes that all the tests for Lyme are unsatisfactory. The diagnosis must be clinical.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
When is your next appt with your LLMD?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I already asked this on another post but, do you have a follow up with your llmd??
This is when you should discuss your results and what your next plan of action should be.
Patience, street!
Posts: 423 | From Upstate NY | Registered: May 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
When one goes on a one week vacation, one usually returns to work and is two weeks behind.
You're not practicing my patience advise, street?????
I know to you, everything is about you. But there are many files on this LLMDs desk. Probably a stack 2 ft tall. Sit and wait. Calmly.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would be willing to say your immune system is shut down by the lyme and the IND's are a good indication.
I would take doxy for 3 weeks-go off for 2 weeks and retest if you don't feel like a LLMD is in order.
I had to challenge like this to get a pos. IgM. Many docs now post the need for the sickest to
challenge the test to produce enough antibodies to be seen.
But if you want to test for the other possibles too go ahead. There are lots of virus' and bugs you can have with it.
Sometimes like in me-they will not be seen until you treat the Lyme.
Then I broke out in several different kinds of rashes...3 mths later. Talk about ticked!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Hey Street, We both joined lymenet in Dec 2009. I'm starting my third protocol after ending up in the hospital once and not making much progress since beginning treatment. What I'm saying is, our issues are so complex, it takes a long time to sort things out. I'm working so hard on this--with reading, diet, etc-- I often feel disappointed that I'm not getting better results BUT I know I'm not the only one in this boat.
Also, as others have said and as you must realize, since lyme is such a difficult area there are very few LL docs and practioners to deal with an avalanche of patients. FYI, I noticed over 160 people joined lymnet in one day once!
What have you been doing, besides the prescription meds, to work on your candida? You may have posted this before but I'm not always up to reading on here everyday.
My 2 cents, why don't you wait for your current LLMD to get back to you so you can get on SOME sort of treatment. If you don't like that person, then you are at least treating while you wait for an appointment with another doc who might suit you better.
I'm sorry you're so frustrated but here's something--I asked a doc if I had lyme 4 years ago. In that time I went to about 35 docs to get on the right track. I've had bad and frequent symptoms for 15 years and minor, scattered symptoms for over 25 years. It may well be that I was first infected 33 years ago. There are over 17,000 registered users on lymenet. Your case is important but you're not alone.
sp
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Street.... do you realize how incredibly busy LLMD's are? I got my IgeneX blood drawn and then had to wait until my next visit with my LLMD to get the results. They are SO busy!
It's a CLINICAL diagnosis, you already know that Quest sucks and is usually false neg. You have symptoms... so just wait to see your LLMD, try some antibiotics. See if you have a reaction and CHILL!
You may regret blowing off the Lyme diagnosis later on if you get worse.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Street,
You've been given a protocol but you don't stick to it. The LLPA has given you SpiroNIL (Teasel) and BioTox Elim. Do not underestimate these as they can be a solid start for some patients and they cover many bases.
You also have been given other prescriptions and instructions so that you can beat back the candida - your system could not tolerate abx at this time and the candida must be brought into control first.
But you have to follow your doctors orders so that you can proceed.
Adding this and that on your own just pulls you off the track. While the tinctures you've started with may not be the biggest ticket to success, it is a reasonable start - in light of the candida problem.
Take the nystatin prescribed. Take the Diflucan prescribed - that also has antimicrobal and anti-lyme properties. You were prescribed these for a reason. Do whatever else your doctor said and add only those supplements he suggested.
You've got a plan. Follow it. You can't keep saying that you've been ignored by your doctor. You have been given a very reasonable plan for this particular point in time.
We all have to do an "expectations" check and an "attitude" check as what we think should happen in the timeline we want is pretty much off the menu with lyme. Every lyme patient, at first, is perplexed by the fact that - no matter what treatment path - it's a rough road. Our self-care, our patience with ourselves and our doctors is vital.
You have an excellent doctor. It's not fair to continue bad-mouthing that group. It's really just not fair. Look back over all your instructions. Follow Dr. B's self-care guidelines, trust the process. As the candida gets under control and you've been on the tinctures for a while, then you will be ready for the next step. -
[ 02-26-2010, 05:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with everyone else. LLMDs are so busy, and if your doc doesn't want to change anything right now, he is probably not going to call. He may want to wait until your appt so he can discuss things with you "face to face". Sometimes face to face is the best way to get your information.
If you do indeed have LD, "patience" is going to be forced on you! You might as well start practicing it now.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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