-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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julielynne4
Unregistered
posted
Positive bands 31 and 66, 39 IND. Someone correct me if I am wrong, but aren't those 3 all lyme-specific bands?
It looks like lyme to me. Non-LLMDs do NOT know how to diagnose lyme.
posted
I think most non-LLMDs require a positive Elisa + 5 bands IGG to say you have Lyme. 4 IGG bands, or IGM positive may still be a negative to them, regardless of symptoms -- which is of course silly.
Have you been tested for co-infections?
I've mentioned my Lyme sort of off-hand to other doctors when I have to see them (they want to know why I am taking antibiotics), and one time a nurse wondered how I could have been positive with a negative Elisa. After I mention I tested positive for like 3 other tick diseases too, I get a nod of, 'Oh, I guess you do have it then.'
I'm sort of surprised more non-LLMD docs don't use co-infection testing for IGM positive people, as a way to figure out tick exposure and likelihood of Lyme. It should be a clinical diagnosis regardless, but when you have multiple tick disease exposure, statistics alone sort of push you into the very likely Lyme category. Then again, they rarely test for other tick diseases, as they falsely expect they are super rare.
Posts: 584 | From NY | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- julielynne - Bingo !
Lemon-Lyme has a good point with the faulty IDSA criteria AND they require a NEW, ACUTE case. They will not consider long-time patients. They may also require the rash and may insist on confirmation with a spinal tap.
Bottom line: Get an ILADS-educated doctor.
Dr C's Western Blot explanation is discussed here:
"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."
---Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I think CDC negative and Igenex positive to a non-LLMD is like someone half-pregnant. lol. They could care less about what Igenex calls positive.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Thanks all. She is a very kind doc and she did
not say, "You do not have lyme disease" but
rather, "I just cannot see it by looking @ those
results. I think you have MS." She also told me
to take this to an LLMD. She is open minded and
has a overloaded practice. She cares
nonetheless. I also had an eval with a major
hospital neurologist/physiatrist. Her
comment, "I am NOT" going to gi with what is in
your heart." I asked more comparative questions
about the CNS abnormalities, "honestly-you
cannot tell the difference between
Neuroborreliosis and Multiple Sclerosis." She
too did not disbelieve. She also told me to see
Dr. M (LLMD) BUT I WILL NEVER SEE HIM AGAIN. The
point is a UW professor of neurology agreed that
I have LD and used my brain/spine pictures (MRI)
at a UW Neurology presentation. It was easy for
him to agree when I showed him past/prsent (at
that time) MRI results for my C-spine results
and he saw that a full load of lesions vanished
after antibiotic therapy. He then made a deal
with me and that was to return to Dr. R and
continue treatment. I did not (dumb) because I
thought that I was healed. I now have more
lesions than ever in the entire CNS. (I am
hitting myself in the forehead with and saying
STUPID)...
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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posted
PS-I cannot afford (right now) tests through
IGENEX. Can Bartonella and of IDs be tested
through Quest or something like that?
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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posted
"Well, you can take antibiotics and get well or you can pass on that idea and stay sick. Your choice." not helpful and not necessary.
uhm "lymemetoo" I know that Lyme has messed with
my communication/writing skills but I obviously
admitted to a
mistake-I believe that I called myself DUMB.
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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posted
If you want to get tested for Bartonella and other co-infections, you can use local labs that your insurance will pay for.
Like Lyme, there are a lot of false negatives too, but I'm not sure Igenex is that much better at testing co-infections than other labs can.
Posts: 584 | From NY | Registered: Feb 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
People want so badly for their doctors to know more about whether they have Lyme Disease or MS, than a group of unknown people on line support group?????????
I completely understand. You guys have no idea what many of us have been through/experienced first-hand, read time and time again from hundreds of others on this support site?
Doctors are suppose to know all and cure all. Well guess what?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
31 and 66 are NOT Lyme specific. Lyme specific means only Lyme (bb) can cause them. I'm not saying you don't have Lyme, just that you should know those bands can be caused by things other than Lyme as well. There is a band 31 confirmation test that Igenex offers that will tell you if your band 31 is from Lyme or not. That might be a helpful test for you to get.
39 is a band that is likely Lyme specific (so far no one has come out with anything saying it isn't that I know of). 39 is highly indicative of Lyme. If you could get that one to show more positive than IND in the future, that would be nice because it would provide a little more assurance.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
PAM! I'm with you. I diagnosed myself in grad
school and I am not a med doc. An LLMD agreed. I
must also say that I have markings on both
shoulders that look like stretch marks (lower neck to lower shoulders) (not
overweight when they appeared at age 19 or 20).
Sounds like Bartonella to me. You?
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a clinical diagnosis!
The test are just used to back that up.
If you have symptoms of LD and a history of LD, then a good LLMD will give you a clinical diagnosis.
After you treat for a few months, your test may become positive, thus backing up the clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, I agree that it's a clinical diagnosis.
Julielynne said to correct her if she was wrong, so I thought I would! Unfortunately the majority of those bands are not LD-specific.
The best thing to do at this point would be to gauge the response to antibiotics.
The Western Blot is negative though, not positive (though 39 is Lyme specific, as I said). So if you are diagnosed, it's "clinical." I'm sorry there isn't a more definitive answer. Maybe with time more bands will show up, which can happen.
Your doctor was wrong that Lyme is not possible though. The testing is not the greatest. To say Lyme isn't possible is incorrect. Sometimes more bands will show up once you start to feel better. In my opinion, it is hard for patients to know what to do. If you think you have Lyme, you should treat it and see what happens. Your intuition is the best tool you have, better than the bloodwork.
Posts: 4590 | From Midwest | Registered: Jun 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I had an IgeneX positive but several doctors insisted that I did not have lyme disease. I got a lot sicker in the 2 years that it took me to fully research the possibility that I might have lyme disease.
Bottom line: Treatment has helped. It has been a long, slow process but I am much better than when I started. I wished I had started a lot sooner. I could have saved myself years of suffering.
I shudder to think if I was still listening to my non-LLMD doctors. Please do whatever research you feel is necessary on both sides of the argument and make a decision before too long.
map - I couldn't agree more. I have a dear friend who does not want to go out of town to be evaluated or treated. Apparently she has a positive IgeneX lab test. Knowing what I know about the complexities of lyme, it is very scary to me that she will likely not be seeing an LLMD for treatment.
Most of them are heads above others in their experience and training regarding TBI's.
Good luck, Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Two of my family had lyme symptoms before testing with Igenex...and two had no symptoms.
We all tested positive with Igenex.
I forced the two who had no symptoms to take the Igenex test and start antibiotic therapy, as was recommended by my LLMD, to be proactive for the non symptom ones.
They felt horrible on the antibiotics...also taking mepron as they tested positive for Babs.
They had no symptoms! So after a year, the two with no symptoms refused to take it anymore, and felt better immediately. The antibiotics made them feel bad...not the lyme!
Yet, the other two, me and my daughter, needed the treatment, and it helped!
Therefore, from our experiment, I do not believe anyone should be treated if they have very positive results from Igenex test and no clinical symptoms!
I was just scared silly when I learned what I did about lyme...with all the ways it can be passed, and the possible future problems, and wanted my while family to avoid getting ill, and was proactive.
I now do not believe this is necessary for those without symptoms that have positive lyme antibodies...via Igenex testing. Their immune systems must be working well! I think most in the general population may test positive for lyme with the Igenex test, as most have probably been exposed at some point.
I also believe that those who get ill with the symptoms, have a pre-condition, related to other toxic buildup , not allowing the immune system to clear the lyme naturally.
I say this as my daughter and I both no longer have lyme...it was cleared after 1 1/2 years on doxy to get rid of co-infections, then taking a abx break by getting off abx and working on detoxing. That's when the lyme left! WE were always gong to go back on the abx after our break...but no need!
This is my experience. Anyone else have similar thoughts or the same experience with other family members?
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Here is more proof. Dr. P in CT was sure that I have LD with Bartonella. I have, as I wrote, "red streaks" on both shoulders and have had them for a very long time.
Dr. B wrote, "These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes"
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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The Western Blot is negative though, not positive (though 39 is Lyme specific, as I said). So if you are diagnosed, it's "clinical." I'm sorry there isn't a more definitive answer. Maybe with time more bands will show up, which can happen.
Hoosiers, Neuro posted this above:
IGM->
IGENEX- POSITIVE CDC/NYS- NEGATIVE
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Oh, I'm sorry, I didn't realize Igenex had different criteria that included 31 as part of a positive WB.
I hope I'm not stepping on any toes with my comments. It's all just a matter of perspective, really, and that is why we all share our views.
I don't understand why Igenex calls band 31 positive before doing the confirmation test on the band, but I'm not Igenex nor am I an LLMD, so it's not my place to say.
Either way, the bands point to possible Lyme, it just would be nice to have a little more of them for more solid proof.
At the end of the day, treatment is based on symptoms, not tests......so best of luck and sorry for my error!
Posts: 4590 | From Midwest | Registered: Jun 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It took me a year of treatment to get an IGM CDC positive test result! Like I said its a clinical diagnosis.
If you have symptoms, treat. If you don't have symptoms, don't treat.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I would certainly call that a positive test result, especially if the history and symptoms supported it. That "combination" of bands showing up are uncommon among any of the conditions that any single band alone can "cross-react" with, i.e. it's Lyme, it's not EBV, AIDS, or Herpes, it's Lyme Disease.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
SG, I thought you never had a positive WB....just scattered bands on various tests?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
An option instead of doing the 31 confirmation test is to simply test for viruses.
Although EBV and many viruses will test IGG positive in Lyme people, they shouldn't be IGM positive unless active. And if you have no positive IGM virus bands, I don't think it affects band 31 on the WB-IGM.
Cheaper alternative, as insurance will pay for viral testing. And I still think co-infection testing (ehrlichia, ricksettia, bartonella, babesia) should be done by all docs. If you test positive for 1 or 2 of the above, with a positive Igenex, and no active viruses, it would seem Lymey to me.
Posts: 584 | From NY | Registered: Feb 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
A few years ago...that was not the case unfortunately for the two in my family the the LLMD recommended to go on ABX. thank God they refused and my eyes are now opened. Thanks chuck, and all.
Posts: 1009 | From NJ | Registered: Aug 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Chuck - can you provide references for band 39 please? I've been told by a reliable/reputable source that it is specific to borrelia.
Also, this information:
Carl Brenner: "The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn't."
Copyright notice Serodiagnosis of Lyme borreliosis by western immunoblot: reactivity of various significant antibodies against Borrelia burgdorferi.
B Ma, B Christen, D Leung, and C Vigo-Pelfrey Whittaker Bioproducts, Inc., Walkersville, Maryland 21793-0127.
Abstract The significance of various antibodies against Borrelia burgdorferi was studied by Western blot (immunoblot) by using 578 human serum samples.
The proteins regularly detected by using samples from patients with Lyme borreliosis were those with bands with molecular masses of 94, 83, 75, 66, 60, 55, 46, 41, 39, 34, 31, 29, 22, and 17 kDa.
The detectable frequencies of most of these proteins appeared to be significantly different between the sera from patients with Lyme borreliosis and those from normal control individuals as well as from the group with syphilis.
The 39-kDa protein band recognized by polyvalent antibody was found to be the most significant marker for Lyme borreliosis. Furthermore, an anti-39-kDa immunoglobulin M response was detected in the samples from patients with early-stage Lyme borreliosis.
Results from the use of monoclonal antibodies and patient sera revealed that the 39- and 41-kDa proteins may be structurally related but are immunologically distinct antigens.
The significance of antibody reactivities to the 41-, 94-, 22-, 31-, and 34-kDa protein bands is also discussed.
And this:
Western blot band intensity analysis. Application to the diagnosis of lyme arthritis
Krzysztof Kowal, MD, Arthur Weinstein, MD * New York Medical College, Valhalla
*Correspondence to Arthur Weinstein, Division of Rheumatic Diseases and Immunology, New York Medical College, Valhalla, NY 10595
Funded by: Kosciuszko Foundation
Abstract Objective. To determine the usefulness of quantitative band-intensity analysis of Western blots for the diagnosis of Lyme arthritis.
Methods. IgG Western blots for antibodies to Borrelia burgdorferi were performed on sera from 39 patients with Lyme arthritis, 30 patients with syphilis, 50 patients with connective tissue diseases, and 10 healthy individuals.
Band positions and band intensities were calculated using a computerized image analysis system.
Results. Lyme arthritis patients had more bands and higher-intensity bands than did non-Lyme patients. The presence of at least 2 bands of moderate to high intensity (>40 optical units) or at least 5 bands of lower intensity (>20 optical units) was over 90% sensitive and 100% specific for the diagnosis of Lyme arthritis. A 60-kd band was present in all Lyme arthritis patients.
The presence of an 83-, 39-, 21-, or 18-kd band was highly specific for Lyme arthritis.
Conclusion. Band intensity analysis increases the objectivity and accuracy of Western blot interpretation for the diagnosis of Lyme arthritis.
And this
by the clinical consultant to IgeneX - see page 78
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
One problem I have with the study is that they assume that those who have CMV and EBV don't have lyme. If an LLMD were looking at a patient with EBV or CMV and a band 39, they may still diagnose that person with lyme when looking at the whole picture.
I'd have to see how they excluded EBV and CMV patients from a lyme diagnosis. Seems like at that time, people were often excluded because they didn't have a bullseye rash, just like they were considered to have lyme because they had a bullseye rash.
Now we know that even if you never saw a rash at all, you may still have lyme. We also now know that some strains that cause a bullseye rash do not cause systemic infection.
posted
You only need one Lyme specific band, and you have that. Listen to Dr. P.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
chuck wrote (I have an example, found on another site, of a PCR Positive {DNA!} with very few bands that I shall unveil when I get around to it.)
This has been demonstrated repeatedly. We had a poster here some months ago who was seronegative but had the DNA of borrelia upon testing. Seems to happen regularly.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I haven't read the paper yet but I will.
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