feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Where were these labs done? Looks like Igenex as all bands seem to be reported.
You have a 41+ IgG. Are you very ill? een sick for a lng time? Often the sickest report the least bands as their immune systems are so stressed they do not respond with any antibodies.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Remember that a negative test is not always correct. You need to be assessed in person by a LLMD who also knows about all other chronic stealth infections - not just other TBD (tick-borne disease) but also Cpn and HHV-6, coxsackie, etc.
--
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:
posted
Dear feelfit, Yes, I am ill. I have severe gastric issues, as well as fatigue. Feeling like I am going to faint a lot is scary. I know my immune system is in bad shape. Celiac is part of it, but I follow a strict gluten-free, lactose-free diet.
Despite this, many issues persist. I know I have a major overgrowth of yeast. Years of abx, birth control, and steroids for asthma set me up for trouble. So much matches up with Lyme. On the questionnaire, I had 53 of the 75 symptoms. According to the Igenix papers, it is possible I have Lyme.
Dear Keebler, Yes, I know my physician has met Dr. C from MO. I wonder if we could set something up with him? My PCP is aware that negative results overall may still not mean Lyme is not there. Interpretation-wise, I am not sure where she stands. I still need to send the results to my chiro, and see what he feels is the next course of action.
Dear Geneal, I would, but I cannot afford to retest. I have no insurance and no income. This is so frustrating! I had to use the money my grandfather gave me for my birthday and Christmas. It is all I had, and Mom and Dad cannot afford to help me. Thank you for the hugs!
posted
Jin, if candida is a big problem, it can have Lyme-like symptoms. I'd personally work on treating that and see if any of your symptoms resolve. If they don't resolve, then revisit the idea of Lyme because a negative test doesn't meant much.
Treating candida is not a waste of time, you'd want to do it as part of Lyme treatment anyway.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Dear sixgoofykids, I know Candida is a major problem. I know I need to do something. I have to wonder if the Lyme is causing it to be so difficult to remove. Is it true your body sometimes utilizes yeast to protect your organs against dangerous microbes? Maybe that is what comes to mind anyway.
posted
It uses yeast that way to protect from heavy metals.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, that's the most negative Lyme test from Igenix I've ever seen in my life. May be good news and maybe it's not Lyme!! No guarantees though. I think THOROUGHLY exploring other options such as candida, viral issues, etc. makes sense before going to a LLMD. Others' opinion will vary greatly though.
Good luck whatever you do. I'm sorry you're feeling poorly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Jin, I just noticed the band 31 on IgG being IND. That band can be significant, but can also be from other things. IGeneX has a band 30/31 confirmation test that will tell if it's from Lyme or something else.
In your case where it's so unclear, I would have that test. If it's Lyme, you will know for sure.
I think they do the test from the blood you've already sent them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Jin, judging from that laundry list of stuff you got going on, you don't need lyme to feel bad. All that other stuff will do it. However, you may want to rule out other infections....
I have thyroid probs too and they can make you feel like hell so make sure you get complete hormone workups done, checking thyroid, estrogen, IGF-1, cortisol, and all that good stuff...check for diabetes...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think with all your other issues, the test pretty much confirms it is very unlikely you have Lyme Disease.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think it is very possibly positive.
On my first test I only had one band migrating in
the IgM region. You have a 41 which is flagellin
and a IND 31 which is classic Bb. You still need to
see a LLMD. He may want to challenge or just
treat. Your yeast issues plus other issues could
cause it to be hiding more like mine was before
antibiotics. After antibiotics I got a +++31kDa.
Do you have any eye issues?
-------------------- 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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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Six is right, I missed the 31 IND as well. Band 31 is an indicator of longstanding infection. Have the cross-reaction test to make sure it is Bb (lyme).
If it is positive, I would see a LLMD and treat.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Wow, that's the most negative Lyme test from Igenix I've ever seen in my life.
Wrong. Mine was even more negative and I don't have as many issues as she did and I DO have lyme and other co-infections and even that crazy 'mystery bug' thing....
I think there's a HUGE chance you have lyme disease considering the 41+ and the 31 IND. Your immune system may not be in the condition to make antibodies or fight the disease. That's how my immune system was/is unfortunately. I'm imunnocompromised and that can definitely cause a negative WB or other tests...
With how negative my WB was, I surely would have been told I didn't have lyme too, but I'm glad a doctor told me he believed I had lyme. If I went on, without treating lyme or other co-infections, I'd be worse off today or even not here to say this.... I was SOOOO completely sick and lyme disease is the only disease that matched my symptoms the best. It's hard to have such a negative test, because I still doubt here and there, but the truth is I have gotten better during treatment. I'm no where near 100%, but I am better than when I first began treatment. Some of the symptoms have gotten better and a few have almost disappeared, like shortness of breath. I still have it, but it's gotten so much better.
-------------------- 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
Dear sixgoofykids, How much does that test cost that you mentioned? I do not think we can afford it right now. I thought there is still a good possibility I have Lyme. However, the yeast is a major contributor.
Back in college, I actually wrote an essay on Candida. It has very interesting pathology. The test results are quite vague. All of this is so frustrating! My teeth are going bad as well. I went to the dentist the other week, and I need a bunch of fillings and extractions.
Dear seekhelp, Everything is so out of whack right now. I have never actually been healthy. Still, Lyme would explain a lot. You know how that is. If it is not one thing, it is another.
Dear Lymeorsomething, I am know the Thyroid can cause some nasty trouble. Right now it is hyper again. My other hormones are probably not any better. I have a feeling my adrenals are exhausted. Cysts may be there again, since pain in the ovary area has been around more and more.
Dear Tracy9, I have no idea! I am back where I started. The only thing to do is get the band confirmation test when I am able to afford it. Let me see...who can I rob? Why does money have so much to do with everything?
Dear Pinelady, I have double-vision. It is probably from my Thyroid. Reading is difficult sometimes because of it. This is interesting. Hopefully, I will be able to afford that other test.
Dear feelfit, It is easy to miss on these tests. They are difficult to even read. Interpreting is even worse. I had to look them over a while. This is like a game of chance, only with ticks.
Dear disturbedme, This gives me some hope that I may have an answer. Changing your diet constantly and still suffering makes you wonder what else is going on. I have got to figure this out somehow! What a bummer. I was thinking I was safe.
posted
I had a bulls eye rash after camping in N. Carolina in 1994. This was follwed by swollen knees and the first of my vertigo attacks. It was misdiagnosed as Meneire's Disease b/c no one asked about camping or a rash.
Nearly every doctor I saw ordered either the WB or Elisa to check for, and I quote from one of my records, "chronic Lyme" (this was in 1997, after my 2nd attack). Because the tests were all negative, it was dismissed as a diagnosis, even though each doctor suspected it based on my symptoms.
My IgeneX test is only positive for band 41, IgM and IgG.
There is no doubt I have Lyme. I was never treated in all those years, and as my doctor said, it does not go away.
I am anxious (and scared) to have a repeat Western Blot, as my doctor says (and I have read) that many people will convert to a positive after several months of treatment.
The test requires that your body is making antibodies approprately, which not everyone does for various reasons.
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
I have seen many tests posted here on Lymenet, and to be honest, it is rare to see a test with almost all "negatives" and only the 41+ IGG.
This does not mean that you DONT have Lyme disease, but it does mean that a full diagnostic work-up must be obtained to rule out similar conditions.
A positive 41+, it is believed, can also be caused from Viral and other issues.
I'd hate for you to pursue Lyme if something else is the underlying issue.
Do you remember any tick bite(s)? Bullseye rash? Endemic area?
I hope you get the help you need soon. Posts: 371 | From CT | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Jen, your vision problem is most likely Lyme.
Mine did not start until Lyme.
The second most common site for finding the Bb on
autopsy of animals is the eyes.
The antibiotic drops I am taking now are making
it worse but I hope it will kill them out and get better in time.
-------------------- 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
Dear Lymetoo, Affording an appointment with Dr. C is my concern. I could always call and see if there are payment plans. Money is so tight right now, we barely can afford groceries. I wonder if I could get an Angel Flight there or something? Or, maybe my aunt and uncle could lend us their camper if it is still working? I need my own kitchen due to a strict gluten-free diet.
Dear kitty9309, Even the Igenix test sheet says the WB alone is not necessarily a good reason to assume it is not Lyme. They also state that diagnosis should be made according to symptoms as well as health history. At least these people are honest. Labwork is so irritating, because it can reveal very little. Doctors are stubborn, and often rely too heavily on inaccurate lab tests. Various things may influence them, causing false-negative results.
Dear JKMMC09, I believe I was infected as a teenager. The summer before starting high school, my best friend and I went out in the woods a lot. There was a red, blotchy rash that itched and burned all across my waist. We assumed it was poison oak, and just put cream on it until it went away. It actually took two or three weeks.
The confirmation test should rule out viral and other causes if Lyme shows up. That would be a worthwhile pursuit. I agree that being sure other issues are not present is a good idea. My immune system is very weak from Celiac and a massive overgrowth of Candida. All I know is, there is a whole lot wrong, and no true answer.
Dear Pinelady, Does Lyme cause little sparkling things to come out of nowhere and disappear? I get that as well. It is like glittery dust. The eye doctor said I did not have floaters, and I asked some others about this and they said it was not Lyme floaters either. That was very interesting about finding Borrelia in the animals' eyes.
Dear sixgoofykids, I called Igenix today about the test. It is less expensive than I thought. Dad says I can use the money I rolled for it. The confirmation test is $100, and the code is 488 or 489. This should reveal once and for all if it is Borrelia. Meanwhile, I am going to check up on the Pyroluria you mentioned.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There are lot of links to eye issues.
I think Europe recognized this more than here in
the states. And is one of their first clues to
Bb. While here it is not even questioned for the
most part. I told =5 different doctors I was going
blind and 2 were eye dr.s. They all tried to tell
me if was just aging. While I would say no. I did
not go from threading needles overnight to not
being able to focus for an aging excuse....I think this should be one on top of the list at least for me.
-------------------- 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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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Jin,
I am pretty sure the 31 test is $100. I think it would be worth it though. I thought about having it done until I saw the band 39 info and then I knew it was Lyme (plus I had electrodermal testing before I even had Igenex test and it said I had Lyme and Babs, Coxsackle, mycoplasma, ect).
I too missed the IND 31 band. It is the band they used to make the Lyme vaccine from.
Have you ever taken abx and felt either better or worse??? Before I knew my CFS was Lyme I was on Cipro after a bunch of IV abx for a ruptured appendix and I felt AWESOME for several weeks and this was right after a surgery! I was so happy, felt like I was on a happy drug, but I was only on abx, lol!
I agree that you should see an LLMD as soon as possible. As others have said, if you have been sick for a long time, the bands aren't going to show up.
If you would like to PM me I see you are in the Midwest, not sure which state, but we just saw a great one for my son yesterday and he doesn't care about the test results if you have symptoms. Let me know if you would like his info (he's one of the LLMD's bettyg sends, but I can tell you which one we saw).
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
You could also take some antibiotics for awhile and retest later. Sometimes the Western Blots turn more positive further into treatment.
But that should be up to a good Lyme doc's judgment as to whether or not they think treating would be beneficial, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Dear Pinelady, I know I am near-sighted, but being myopic does not cause certain things. Doctors seem to have trouble taking a patient's word for it. That is so annoying! How these people get on such a high horse is beyond my understanding. Most doctors are extremely unaware of health information that is vital.
Dear Ocean, You are right. The test is fairly affordable. I am going to get this done! I had no idea they use that band for the vaccine. How about that?
I used to not have issues with abx, but noticed the last time I took Flagyl and Amoxy there were issues. The Flagyl began irritating my stomach after a few days. Amoxy actually did something different at first. For the first three days, I had developed a slight sore throat and stiff neck and shoulders from it. Once the first three days were over, the Amoxy then began causing nausea and diarrhea.
I am sure the infection has been in there a while. If I was infected, it was in 1997. That is when I had a rash around my waist, as well as other symptoms months later. I will PM you soon. The help is greatly appreciated.
Dear Hoosiers51, I am afraid to take any antibiotics, due to making the yeast worse. My intestines are really in trouble. I know it is necessary to try and test again. Right now, I cannot afford testing again due to having no income. Hopefully, if I continue applying for SSI, it will go through.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Have you seen a good Dr. for the Crohns?
Do you also have Celiac? I have a niece who has
both. Proven genetically. Her treatment helped
her amazingly well. She went from vomiting every
day to able to eat a lot of things she could not
before. So I do know where you are coming from.
Yeast is expensive to control conventionally.
Maybe you could go the homeo path by eating the
foods know to reduce the masses. A lot of Bb
patients are alkaline so it may be that beefing
that up will help also. Test strips run 10.00 and
foods that will convert can be found online.
-------------------- 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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No guarantees though. I think THOROUGHLY exploring other options such as candida, viral issues, etc. makes sense before going to a LLMD. Others' opinion will vary greatly though. ![[lol]](graemlins/lol.gif)
Why does money have so much to do with everything?
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