I thought IgG was Past infection?.....I am sick NOW
I MUST have co-infections, but tested negative (QUEST), I am going to ask to be tested again and by a better lab.
HELP!!!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
You have lyme.
You have your answer.
I wouldn't worry about whether it was IgG or IgM positive. Either of them still means lyme disease. Doesn't matter if it's a past infection, it can still be making you sick NOW.
I am so glad you have your answer because I know you've been waiting and waiting!
-------------------- 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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Alv
Unregistered
posted
you have lyme but not neurolyme.
Band 30 is n ot there.So you are having lyme and coinfections.In that case mucoplasma or BLO-that is common in MASS ...is increasing your balance and vertigo issues.Who knows you might have ehrlichiosis and BABESIA also, AS I DID.
Yep all of them..maybe viruses too ( and shingles on top of it as MY CASE).
You have your answer .Get treatment and you will get better.Do not delay as you will spent $$$$$ in the delays .
I delayed 6 months ( as I thought the test and the treatment was exspensive ) and for that I ended up spending $25000 in 6 months to keep myself alive.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Alv:
You have lyme but not neurolyme.
Band 30 is n ot there.
Wait, why does that matter? Just because band 30 did not show up does not mean it's not there. Kind of like when a person gets a negative WB, that doesn't mean they don't have lyme.
-------------------- 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
Yep, you got your answer - LD. I'm glad you're on the right track. I have bad balance issues too, I also tested + for babs, bart and ehrlichia...you may want to retest for co-infections at IGeneX.
Also, I have been sick for apprx 3 years. My stronger positives were on IgM, not IgG - though evidence there too. I don't think either way matters. I've read how the bacteria cycles, so I think it just depends on where the cycle is when you are tested whether it's stronger in the IgM or IgG area.
I'm no doc, but my LLMD explained it to me and it made sense at the time! Good luck. Now, I hope you can find an LLMD you can trust and will help you through this. Keep us posted.
Posts: 566 | From West Coast | Registered: May 2008
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I was told band 30 is only normally seen in European strains (I had highly positive band 30 and live in Europe) and is often seen in a Californian strain????
How can you tell if someone has 'Neurolyme' from test results???
I dont know why I am not satsfied? I think one of the reason is that I am so sick and am bedridden and litterly NON _FUNCTIONING. I am in the house 24/7 and only go out for docs appoinmetns.
I guess I feel that there has to be something else that is making me this Ill......There has to be something?
I will get tested for C0-infections through IgeneX or another good lab.
Thanks everyone, but why am I not convinced or even satisfied?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by UnexpectedIlls: I dont know why I am not satsfied? I think one of the reason is that I am so sick and am bedridden and litterly NON _FUNCTIONING. I am in the house 24/7 and only go out for docs appoinmetns.
I just wanted to say that you're really lucky you got a positive!
I wish I would have. I have more reason to not be satisfied as I never have gotten a positive western blot and that was even through IgeneX. I've only gotten one band come back ++ and it wasn't lyme-specific. I've had Bartonella come back positive, but even still, I worry day in and day out if I do have lyme or not.
So I believe you're really lucky to have that positive. I want a positive so badly just to KNOW and not have to worry any longer.
I know lots of people here who have gotten positives and still question if it's really what's wrong with them. It's something to be expected after being ill so long.
Believe and be happy you got a positive so you can treat it now and work to rid your body from these horrible diseases.
If you ever need to talk, I'm on your My Space.
-------------------- 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
Congratulations, I'm sad to say, you've been lymed.
Why is it not CDC postive, you have five bands.
I was lymed ten years ago and still test nine positive bands on IGG. I'm not so sure it matters which is positive, either one is fine. They don't prove current or past illness. i'm positive on both 10 years later.
You know you are on the right track. You just have to accept it. YOu can read all the stories here and see that plenty of people are just as sick as you from LYME.
I read somewhere Lyme Disease is a catastrophic illness.
You have a catastrophic illness. NOw focus on getting well.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
I have been Lymed havnet I.....I want to cry
It is Bittersweet isnt it?
I think the reason it WASNT CDC positive is because there are certian bands the CDC uses as positive, I think Dr P said I was litterly one band off from being CDC Positive.
I guess that close enough right?
Weird too that I had one band on IgM as IND...band 41 and nothing else....
Well, I know I need to accept it, but I guess I have had SO MANY different dx's, I wonder if it is ALL Lyme at the root of all my crazy Blood work?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Alv
Unregistered
posted
Yes band 30 is european strain and I got it at least 14 or 12 years ago.I recall the headaches and the knee pain ...and sweats ...in germany .
but you can get it here also..I heard that in california you have lyme and band 30 .but I have had more than just neuro as I have band 66 and 41 and others..
well -I have Burgdoferi and Neurolyme.
I am not sure if you have joint pains but burgdoferi efects more joints and I have garini that efects the brain mostly.
But got BB also ...so I have both cuplrits.
When I had just garini at least I was physiclay active .Got BB and start beeing in bed..that makes you feel worst.
I know the diferenc and I can not blame you for that .That is how I feel also.
But get the treatment and the joint pain can go away easier than neurolyme so you will feel so much better next year and do whatever you can to help your body .Be agresive!
posted
I was also IgG positive and IgM negative. My LLMD looked at my WB and said that band 31 being +++, which is what mine was, indicated I had it for a very long time.
I'd say the 31 double + means the same for you.
It doesn't matter that it's IgG and not IgM ... Lyme is different from other infections. If you have symptoms and a positive test, then you have Lyme NOW.
Congratulations on a diagnosis, now you can work on getting better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am only 9 weeks since diagnosis...I too have a hard time believing it could make me SO SICK. I am packing 3 co-infections as well, but SO SICK. I just read about others here...lots of sick Lymies. Anyway, no one has been able to find anything else wrong with me and my symptoms sure match Lyme symptoms, along with some + blood results.
Now you can rest in the knowledge that it's treatable. I am still waiting for my abx therapy to show some relief...patience I guess, (sigh). Good luck.
Posts: 566 | From West Coast | Registered: May 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey unexpected,
So glad that you finally got the diagnosis...and yes, it is bittersweet.
You finally know what's wrong - but it is a hard "row to hoe" so to speak.
I do have to disagree with what Alv is saying however, regarding the positive bands.
Bands are specific to certain "parts" of the bacteria...it has NOTHING to do with where the bacteria is in your body.
I'm not sure where he got this misinformed imformation.
Anyways, in my opinion you've won a good part of the battle just in knowing you have lyme.
Treatment can be grueling, but guess what? You have all of us on lymenet to support you.
Keep us posted!!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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bettyg
Unregistered
posted
unexplected, welcome to our lyme club!
you are in DENIAL like the rest of us were, but thankful for your diagnosis based on blood and MEDICAL history diagnosis by your dr.
if you are feeling sorry for yourself, please watch the video on Alex Hermstad, 14, Iowa, who is paralyzed and on ventilator who is critical and dying. HER STORY IS ON YOU TUBE just posted 5-9.
it's posted in my lyme video collection and on her UNCLE MIKEJ'S POST.... prayers for Alex.
please watch this; then every one of us can be very THANKFUL FOR THE SHAPE WE ARE IN at this present time; at least I AM!!!
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posted
So did you say that Dr. P didn't know for sure if you have Lyme or not? If so, that seems weird considering your test results!
Posts: 292 | From UT | Registered: Aug 2001
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Alv
Unregistered
posted
it is true that she might have band 30 also and might not be able to show right now as it was not in her blood while she got tested.
Mine was 30+++ very high and many others bands as well ( cdc positive) .
But band 30 confirms -for sure that is neuro lyme .That is not from me.That is from DR J IN CT.
Just that band there shows that lyme have got neuro .In my case I had it before USA .So is Eurolyme/neurolyme and got reinfected here again .
If you read in some post that shows the bands ..you will see that band 30 is for CNS ( atacks the CNS moslty ), but even BB can go neuro .READ and you will find out.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i'm so happy/sad for you i'm crying (what can i say, it's one of those days).
bittersweet, indeed. you have lyme. as someone said above, it's a catastrophic illness. i too was completely bedridden with neurolyme and coinfections.
now, focus on getting well. you can do this, girl. we're all behind you 100%.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If you have symptoms and have that Western Blot....
Well, my very humble opinion is Lyme.(I am not a doctor)
It is frightening and overwhelming, but not as bad as not knowing what is wrong with you.
Now, go after it. We are here for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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WildCondor
Unregistered
posted
None of it matters, Lyme is a clinical diagnosis. That said, your results are very positive, any +, or IND is still a + and a double and triple ++ +++ is definitely confirmation.
User Alv is giving your wrong information. There is no current test available that differentiates Lyme from neuro Lyme, and that statement is ridiculous and uneducated misinformation. Lyme disease is a multi-system neurological illness. Educate yourselves! That is one doctors opinion....just opinion, not fact. A western Blot can be IgM negative for years because your immune system is so sluggish, you are not mounting a response to show up positive on the tests. WHy would any of you let the CDC dictate to you what is/isn't wrong with your body, use common sense. Their criteria is a bunch of flawed garbage and has been for years. Repeat clinical diagnosis over and over until you understand that you have to go by symptoms, and look at where you live! Tick Haven!
You have Lyme Unexpectedills....make sure you get aggressive treatment right away and don't back down, keep educating yourself, you have got to get out of denial. Testing basically means nothing....its there to support a clinical diagnosis.
Quest is worthless...and all the others are flawed as well. I will email you back...gimme a few. thanks!
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I am in a little denial....I guess from being dx'd with many things...Am still worried maybe some of those things can still be the case??
I am still confused on the whole IgG being positive....I really thought that IgG meant PAST infection????
I know things are different for Lyme, but I am still just trying to figure all of this out.
Peace
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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About the IgG IgM........ This is from Dr C of MO's Western Blot explanation. PLease take time to read it now that you know what you've got.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." ================
I'm very sorry to hear that you have Lyme, but I'm so glad that know you know what to do and can get your life back!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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In my recent past articles I discussed the 11 new human Babesia species, the problem some have removing Lyme's surface biotoxins, the trouble with having indoor mold while treating tick infections, and I mentioned that Bartonella has 30 ways of damaging the body dangerously and it has 200 symptoms. These were sample reasons for treatment failure.
But I am increasingly meeting smart doctor's and patients who do not know how to read a Western Blot. This is the test which usually gets you a basic Lyme diagnosis. So let us go over this so you understand why some labs are better than others. And help you make sense of this medical test which is so very confusing.
Strains--Lyme has many varieties and it is amazing that some companies soberly use Lyme strains in their test which are not representative of more than a small region. So this obviously makes the chances of a positive virtually zero. If you are looking for Asian people in Alaska, can we agree you will find few compared to Japan?
Proteins Tested--the numbers on a Western blot such as 18kD merely mean they have identified a piece of the Lyme bug that weighs 18 kilo Daltons. Over the years, labs have become very good at separating out these parts of Lyme. In a quality lab, the Western Blot tests for many proteins and not just a few.
But I would imagine many still feel the source of the eccentric numbers on the Western Blot do not make any sense. The numbers are simply parts of Lyme in the same way you have a nose, mouth, arm, and liver. Some labs only check for the ``nose'' and others check for up to 13 Lyme parts.
One important feature of a top Lyme lab is the way they get these proteins. One lab grows Lyme for a long period and harvests key proteins as the Lyme modifies itself--just like when you change your outer clothing each day. Other labs do not harvest all these changing outer proteins. And if they have some they are not in equal amounts. Irene (www.igenex.com) is the only lab I know which has 13 proteins tested from 2 important strains representative of international Lyme. And amazingly, they have equal amounts of the search proteins.
Valid Results or Nonsense--In order to be licensed in New York State you are sent clear negative samples and clear positive samples of Lyme proteins in blind tubes. IGeneX results have been exceptional and approximately 100% year after year. I have this posted on my site along with the exact results and all of their licenses at www.HopeAcademic.com. In contrast, I have had patients covered in deer ticks or with a classic, grossly obvious, bull's eye rash, who months after the rash, when seeking treatment, were negative at many labs. Some of these well known labs have dummied down their results and testing because ``they were getting to many positives.'' The Dr. Jones' Approach to Reading Western Blots:
A Common Sense Position
One of the happiest days of my recent career was when this 78-year-old veteran doctor, beloved all around the USA for his treatment of over 10,000 Lyme-infected children, agreed to treat my children. His reading of Western Blots is not affected by any Big Government agencies. He is not accountable to any lab oversight government entity. And no one at the CDC, FDA or any medical board in the USA has his massive experience in treating Lyme in youth and reading Western Blots. So read below his clear and convincing reasoning on the interpretation of the Western Blot.
Before I offer Dr. Jones's material, let me put in them in context, and share a few basics. First, the Western Blot measures the antibodies your body makes to attack the Lyme infection.
One problem I have found with this is that if a child has the infection at a very young age the Lyme can hide and be missed on rare occasions even with a top lab. In my Babesia textbook, I quote the brilliant Dr. Robert Bransford (page 312--314), who lists 28 ways Lyme hides from the immune system. How do I know these ``negative'' Western Blot little children had Lyme? I found all the other co-infections. And after treatment, they began to make Lyme antibodies and became positive over time.
Also, it is important to note that like most progressive Lyme experts, Dr. Jones assumes you have a Western Blot from IGeneX, which is an internationally famous, tick-only lab, with full lab certification in every possible state offering a license and also is CLIA and Medicare approved. Other massive cheap national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms.
However, if you have had a Western Blot done at a junk lab, please still glance at the result. Why? Because you may find, as I did with one relative, that one of the antibodies or "bands" was positive. In this relative, the band was a "fingerprint" band. Meaning, Lyme is the only organism that makes the human body make this antibody. The child was positive.
But what is a ``fingerprint'' band or the important numbers on a Western Blot?
Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant-perhaps this is a rhino? This is the 41 band. It is from the flagella's, the parts inside Lyme that help it move--they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.
Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones' point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme--just like double tusks on an elephant.
What Do the Number of Pluses Mean?
IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.
If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.
Also, many people have ``IND'' or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.
In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND's as weak positives. This is my opinion.
Currently, IGeneX does not use Dr. Jones' criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.
Charles Ray Jones, M.D.
Quotes Regarding Western Blots
There are nine known [Lyme] Borrelia burgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is lab evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Criteria are Confusing in Real Clinical Settings
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
[Dr. Schaller inserted all bolding in Dr Jones' article above, inserted some spacing and simplified a number of medical terms.]
Dr. Schaller is working with Dr. Jones on a Pediatric Lyme book which is 50% completed. Dr. Schaller is the author of 19 books including: The Diagnosis and Treatment of Babesia, Mold Illness and Mold Remediation Made Simple, The Complete Guide to Artemisinin, When Traditional Medicine Fails, 100 Solutions to Out of Control Youth, Suboxone--Pain Treatment with Addiction Relief. He is currently preparing the most up to date textbook on Bartonella, which he feels is the top vector infection in the world--possibly more common than Lyme. Dr. Schaller has 25 National and
International Medical Publications in such journals as JAMA, Medscape, and some of the largest pediatric journals in the world. He was the first to publish a practical cancer cure which blocks a single enzyme for a deadly blood cancer, which has become the standard treatment internationally. He has also designed wholesale nutritional products and published nutrition and herbal purity and potency research.
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bettyg
Unregistered
posted
thx for posting the PHA article from dr. jones on this! i missed that one, and copied it to my newbie links.
would you post the link of this info in TREEPATROL'S ARCHIVE so he can add with missouri's dr. c's explanation.... big thanks!
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posted
He sure has a lot of typos and misspelled words. Wonder who the editor of his book is???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
tutu, on his last couple of books, our very own wisc. author, pj langhoff, has been !!! pj does an OUTSTANDING job on her work!! if you recently bought her 2 books; you'll know why!
it might have been from dr. jones office ... i couldn't tell if it came from james or directly from jones' ??
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