posted
I'm wondering if having band 41 positive, could be from a cross reaction to a virus?
I understand that it is specific for the flagella part of a spirochete, but do viruses have flagella?
My daughter's Igenex test was negative, but she had band 41 positive (+++). She also does have a viral issue going on right now, that is non-specific.
She's been tired a lot with intermittent mild fevers (I know that is a lyme symptom too). But my LLND felt very confident that she definitely has a virus due to her blood work results (WBC low and lymphocytes high). Not that lyme couldn't be possible too, but I just don't know what to think.
Does band 41 cross react with parasites? She's had some issues with that too. (I know parasites are common with lyme also). She just doesn't have clear-cut lyme symptoms. She's very developmentally appropriate and is pretty healthy/happy overall.
Posts: 98 | From NH | Registered: Mar 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
41 can be periodontal disease, not viruses.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I also only had band 41+++ on my Igenex testing...all three times. I was treated based on my symptoms for 3 years and it never resolved them. I also had low WBC and extremely high liver enzymes when I became sick.
Just to add that my sister was also sick and saw a well known lyme doctor to get tested and also only had 41+ on her Igenex. He told her in his opinion it was not Lyme but treated her for 3 months anyway...
In my opinion only band 41 doesn't mean much.
If your daughters doctor is willing to give a trial course of abx it might give you some answers. I am from NH also.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Hi Kim, so you don't think you actually had lyme? did you ever find out what you had? I know that the band 41 showing up positive means that there is something going on.
I'm sure it's not periodontal disease- she's only 2.
I really hate to just try antibiotics if they're not absolutely necessary. I'm not sure that I'd even go the abx route if she had an absolutely positive test.
Posts: 98 | From NH | Registered: Mar 2010
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posted
I am not sure what was/is wrong with me. I had a "flu" in November 2004 and haven't been the same since.
I never really had the typical lyme symptoms and I was diagnosed with CFS and then Lyme. After being on countless abx including IV and still feeling horrible I just don't know.
I was seeing Dr. H in New York and he had no success in relieving my symptoms. They finally told me I should see and endocrinologist.
If I had to do this over again I never would have taken abx for 3 years...had to have my gallbladder out due to rocephin and now I have had yeast problems for over a year..can't even think about the amount of money we have spent.
I wish I had the information then that I had now..my decisions would have been much different.
I finally decided after having 3 Ingenex tests with only 41 ever showing up I had enough and just stopped. I am no better and no worse..
I still don't know what happened to me but I am pretty sure it was some type of viral attack from which I just haven't recovered.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
kim812, have you been tested for viruses? Especially the ones like EBV that are connected with CFS? Check out Timaca's posts on various viruses. HHV-6 and CMV along with M.pneumoniae and c. pneumoniae are some.
kateaton, I wouldn't treat based on only 41. I definitely concur that 41 can be linked to parasite infection as well as bacteria like Bb. Was your daughter tested, parasite identified, and specifically treated for it? Was she retested after treatment to make sure it was eradicated? Did the doctor do an ESR test?
If it were me, I would seek another opinion, take her to a pediatric specialist, make sure she doesn't have asymptomatic ("walking") pneumonia or something. How long has she been sick?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
Hi Marrit- she's been sick since December. I don't know anything about walking pneumonia, but I'll look into that.
We found hookworm and strongoliodes (sp?) and treated with many rounds of meds and some herbals. I'm waiting for the follow-up results (through metametrix)anyday now. Labcorp only came up negative.
I don't know what an ESR test is.
Metametrix also found H. pylori... very strange. she doesn't seem symptomatic for that one, so we haven't treated it. I don't know what to do for this kid sometimes. It's all a bit vague.
Kim- I have to agree that it does sound viral. I understand about the spending so much money on this stuff and getting no where. I've had a chronic fatigue diagnosis for some time. My lyme diagnosis is a new one and I'm hoping to see some improvement. I too have see so many doctors and have never felt better.
Posts: 98 | From NH | Registered: Mar 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Here is some good info on band 41. Read Metallic Blue's post. There is another thread that is very good and if I find it I'll come back and post.
posted
I feel like i have read somewhere (probably googled it) that H. Pylori can cause the 41 band to show up...but i might be wrong.
Posts: 19 | From Southeast Florida | Registered: Feb 2010
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posted
I feel like i have read somewhere (probably googled it) that H. Pylori can cause the 41 band to show up...but i might be wrong.
Posts: 19 | From Southeast Florida | Registered: Feb 2010
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posted
The ESR test measures inflammation as I understand it. That will tell the doctor is there's an infectious process going on. Could also have an NK cell test done. Just some suggsetions.
If it were me, I would take her to a regular pediatrician (a GOOD one) and have some tests run. LLMD's know Lyme, but they are not specialists in other areas. The problem might be easily identified.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
I have been tested for everything..honestly. That is the first thing Dr. H did when I had my first appt. They took 11-12 vials of blood.
Nothing at all showed up..just a past pneumonia virus which they said everybody has at some point.
I occasionally have low wbc counts when I have my cbc tested but no virus's of anykind have ever been present.
I am being treated by an endo and am having a sleep study done in two weeks since daytime fatigue has always been the most debilitating symptom for me.
Dr. H really did all he could for me and they were frustrated as well but I do believe in the end they were questioning the diagnosis as well.
Now I am trying to get my body healthy again after the years of abx..
Posts: 343 | From North Carolina | Registered: Oct 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have read it is sometimes very hard to get a antibody response in children. That got Dr. J in
big trouble. Order antibiotics for a challenge before testing. If in doubt after treatment for a
month I would go off for at least 10 days and retest. At that time you may want to test for other
known co infections. Mycoplasma is highly associated with Lyme.
-------------------- 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
tomcla- I did a quick google search and did find some information about h pylori causing band 41 to be positive. That's very interesting...
Posts: 98 | From NH | Registered: Mar 2010
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posted
I had an endoscopy with biopsy to check for this twice. I had alot of stomach problems at one time but when I stopped the abx they went away.
Posts: 343 | From North Carolina | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
kate, This was posted recently by liz. I've posted the info that relates to band 41 from Dr. Harris of IgeneX
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/95339 Would you treat if you only have Band 41? (Dr. Harris) The older you are the more likely you are to have Band 41, so he feels if you find it in a baby or young child that the dr. should be interested in treating.
My comments: I do not beleive that band 41 cross reacts with parasites or viruses. I have never seen h. pylori mentioned in conjunction with band 41 and I have looked because I have h. pylori. h. pylori is spiral shaped but it is not a spirochete. I'd be interested to see any references to it regarding band 41 if anyone has any.
If it were my daughter, I'd have her evaluated by Dr. J. or a doctor who is ILADS trained. Is your LLND a member of ILADS? If she does have it, NOW is the time to have it treated rather than later. Perhaps a trial of treatment would be warranted to see if she has a reaction.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi Terry, that info is scary. I'm not sure what to do.
I do worry about bartonella with her too. She had 2 stretch mark like lines on her chest and back for a few days. I have not seen them before or since. She has also complained "that her eyes hurt" on occasion. I don't know what to think about that, if she means a headache or that her eyes literally hurt... we tested bartonella through labcorp (which I know is not the greatest lab) and of course it was negative.
I just really hate to give her drugs if they're not necessary and again I don't know that I'd do abx if she was a clear positive anyway.
Posts: 98 | From NH | Registered: Mar 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have heard something about HHV-6 cross reacting with either 41 or 23 or both, from Dr. H of Igenex.
It was in a presentation at one of the Lyme Induced Autism conferences. It wasn't on a powerpoint, but he said it, maybe in response to a question from the audience.
The impression he gave was basically that 41 doesn't tell us much on it's own. That is my interpretation of what he said, not a direct quote.
I'm sure he has seen people with actual Lyme (bullseye, etc) that only had 41....the problem is, you can't make your conclusions based solely on seeing 41 on your blot.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
kateaton,
If you want an inexpensive Bart test, you could try Quest's Bartonella Henselae titer.
Though I am sure it's not foolproof, and of course there are other strains. Mine was positive though, and I have met other Lymies that had that test positive too. So I think it's worth a shot and probably at least better than Labcorp.
My Lyme doctor at the time told me that even if it was IgG positive on the Quest, he considers that enough to treat, especially with symptoms.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I've been emailing with my ND and we're going to try an antibiotic challenge urine test. I'm sure those aren't 100% perfect either. But I think I'll feel better if that comes back negative.
Posts: 98 | From NH | Registered: Mar 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Testing with just flaggellar kda. How it can be wrong...And right...
-------------------- 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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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I disagree here. If she has + Band 41 and is Symptomatic, then how can Lyme be ruled out ? We all know here how terrible Lyme testing is in the later stages. Many theories out there as to why testing doesn't show positive.
Keep in mind that a 2 year olds Immune system is not fully developed yet too.
H-Pylori would manifest with GI symptoms, which I'm not hearing.
CFS like symptoms are consistent with Lyme as are fevers. I would be interested in hearing her other symptoms, if any.
I was one of those that only had bands 39 and 41, and became sick as a dog. I'm now responding to abx and just 2 mos. in. Rocephin and IV Zithromax are making major improvements in my Lyme with only 2 pos. Bands.
I was just retested to see if Antibodies will now come out and I will have these results on Thursday.
Curious if you had Vit. D levels drawn, C4a, CD57, etc. as these number are usually out of whack with Lyme.
Keep in mind that left untreated, symptoms will progress over time. These are just my thoughts and not trying to diagnose here, but if it quacks like a duck then...............
Please keep us updated.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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her vitamin D was around 45, We did not do CD57 because my naturopath wasn't sure that kids ranges were the same as adults and didn't think the test would be meaningful for her. I definitely questioned that but don't really know what the truth is.
She was had a few GI symptoms- she does have food allergies, that mainly gave her excema and went away when we removed gluten, dairy and citrus. She's had constipation, but also went through stool withholding so it's confusing to know what was physical and what was emotional.
Otherwise, she is pretty typical kid- pretty happy, very smart and verbal.
Posts: 98 | From NH | Registered: Mar 2010
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