posted
I'm confused! My wife's Igenex tests came back negitive on both IgG and IgM for both CDC and Igenex criteria.
However, the LLMD that 'we' are seeing says that there are still signs of Lyme activity due to which bands are active. She has NO symptoms and is only getting tested because the LLMD that we are seeing belives that Lyme is 100% transmitable through sexual contact.
What do you all think? Have you been down this road? Further more, I'd like to state which bands are active and get some feedback from you all.
IgM 30 kDa + 31 kDa IND 39 kDa IND 41 kDa + All other bands -
IgG 30 kDa ++ 41 kDa + 58 kDa + All other bands -
Since she is not symptomatic, he's suggesting a 3 month treatment of Doxy to kill what small amounts of Lyme might be present. Plus he belives that we might be passing it back and forth to each other.
What do you think? You all have seem to been through a lot. Has anyone been down this road??
Thanks for the help.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
She's showing LOTS of bands. But no symptoms.
YET.
Some people's immune systems are able to keep it in check. We don't know why.
I doubt it will be so forever. Something, somewhere down the line will cause a crash.
I like your doctor's approach. Kill some spirochetes but don't kill your wife in the process!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I was with my b@st@rd of an ex for at least a year while i was with him (and he was cheating). Anyhow...he is as strong as a freakin ox. Healthy is his middle name. My feeling is that it isnt necessarily past sexually..but could be right...many people have strong healthy immune systems. i didnt start showing symptoms till after i had a very rough pregnancy, bad relationship ended and after delivery and after about a year of getting minimal sleep. only after a year of that taxing my body did it break down.
Posts: 56 | From bayarea | Registered: Nov 2006
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posted
I am not a doctor, but I would go along with your doctor's recommendation!
Note: Bands preceded with an asterisk are the 11 Western blot bands for the ASTPHLD, CDC, FDA, NIH, CSTE, NCCLS 1994 conference recommendation ("CDC recommendation") for the serologic diagnosis of Lyme disease -
see 1995 CDC MMWR link below.
5-kDa 7.5-kDa 11-kDa 13-kDa surface protein - sensu stricto, afzelii 14-kDa internal flagellin fragment [specific for Bb] 15 kDa polypeptide [also for syphilis] 16-kDa 17-kDa Osp 17 [B. afzelii] *18-kDa p18 flagellin fragment 19-kDa immunogenic integral membrane lipoproteins cross-reactive with other spirochetes/bacteria Characterization of antigenic determinants of Bb shared by other bacteria. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b
19-kDa decorin-binding protein 20-kDa decorin-binding protein 20.5-kDa 20.7-kDa *21-kDa OspC [specific for Bb] 22-kDa [specific for Bb or cross-reactive depending on what one reads] immunogenic integral membrane lipoproteins [cross-reactive with other spirochetes/bacteria] Characterization of antigenic determinants of Bb shared by other bacteria. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b 22-kDa OspC [specific for Bb] 22-25kDa OspC 23-kDa OspC *24-kDa OspC 25-kDa OspC [specific for Bb] 26-kDa 27-kDa Osp, Hsp (Europe burgdorferi strain B29, but not American strain B31) *28-kDa OspD, Oms28 [specific for Bb] 29-kDa OspA? 30-32-kDa OspA *30-kDa OspA substrate binding protein 31-kDa OspA [specific for Bb] 32-kDa OspA 33-kDa outer membrane 34-kDa OspB [specific for Bb] 34-36-kDa OspB 35-kDa OspB [specific for Bb] 35.5-kDa 36-37-kDa 37-kDa P37, FlaA gene product, [specific for Bb] 38.0-kDa FlaA *39-kDa BmpA [specific for Bb] 40-kDa *41-kDa FlaB 42-kDa 43-kDa 44-kDa *45-kDa [appeared in IgM in control group in 1998 study done in Poland] MEDLINE - 9972057 - "...whereas in control group only antibodies against 45 kDa and 58 kDa were present." http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9972057&form=6&db=m&Dopt=b [appears for HGE] MEDLINE - 9620365 - "...confirmed the importance of the 42- to 45-kDa antigens as early, persistent, and specific markers of HGE infection." http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9620365&form=6&db=m&Dopt=b 46-kDa 47-kDa P47 fibronectin-binding protein [specific for Bb] 48-kDa 49-kDa 50-kDa [specific for Bb] 51 kDa MgtE 52-kDa Fn-BA 54-kDa [other Borrelia] 55-kDa 56-kDa 57-kDa PBP *58-kDa (not GroEL) 59-kDa [a genetically engineeried fragment of the 83-kDa protein] 60-kDa Hsp [all Borrelia] 62-kDa Hsp60 63.7-kDa 64-kDa (P64) [cross-reacts to human axonal proteins] 65-kDa *66-kDa P66 Oms66 Hsp outer/integral membrane protein 67-kDa 68-kDa 70-kDa Hsp 71-kDa 72-kDa Hsp [cross-reactive with other spirochetes] [cross-reactive with other spirochetes/bacteria] Characterization of antigenic determinants of Bb shared by other bacteria. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=1372635&form=6&db=m&Dopt=b 73-kDa 75-kDa 77-kDa a genetically engineered recombinant hybred Use of a hybrid protein consisting of the variable region of the Borrelia burgdorferi flagellin and part of the 83-kDa protein as antigen for serodiagnosis of Lyme disease. http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8027303&form=6&db=m&Dopt=b 78-kDa OspA 79.8-kDa 80-kDa 83-kDa p83 high molecular mass protein [specific for Bb] 84-kDa [B. garinii] 88-kDa 92-kDa *93-kDa an immunodominant protoplasmic cylinder antigen, associated with the flagellum [specific for Bb] 94-kDa PBP [specific for Bb] 95-kDa 97-kDa associated with flagella 100-kDa P100 110-kDa 200-kDa a fusion protein, a hybrid protein
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-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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I'd be concerned if my western blot (or that of someone I love) looked like your wife's does...
As I understand it, she is showing positive on a number of bands that are specific to lyme. The only one that is somewhat ambiguous is the 41 band -- that one is a flagellar band that can be activated by the presence of other spirchetes (such as the ones that almost everyone has in their mouths)
The others, however, are pretty specific to lyme.
I don't exactly understand what constitues a true positive on these tests (does anyone?) -- the CDC criteria are artificially narrow, and even the Igenex criteria are conservative according to a lot of LLMDs.
As for lyme being transmitted sexually -- well, it is a very close cousin to syphillis, morphologically speaking (though lyme is a lot more complex) -- and we KNOW syphillis is transmitted sexually... so to me it makes perfect sense that lyme would be, as well.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
So after all that reading... it's the IND on bands 31 and 39 with a + on 41 that is the cause for concern?
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I was told by a reputable source that some who are infected via sexual contact will be asymptomatic but can still transfer the infection to others.
There is a lot that is unknown about Bb. Why take the chance? Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Curious as to what dosage of doxy your LLMD plans to put your wife on-Is it 400mg/day for 3 months? Glad she isn't symptomatic-sounds like a good plan to try & head it off at the pass! Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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posted
We have not gotten that far yet. Our LLMD is putting her through the same regimen that I went through. That is a month of probiotics and high doses of vit C, then abx. I imagine he will put her on the same dose of doxy as I am on. 400 mg / day for three months. We have an appointment (for both of us) in 3 weeks. I will return to this post and let you know.
Don't get me wrong.. I'm not against treating her. The benefits far out weigh the risk.. Its determining whether to treat my 6 month old son that is the real delima. Arg!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Visual Afterimage Man: So after all that reading... it's the IND on bands 31 and 39 with a + on 41 that is the cause for concern?
You're mostly right.
You're leaving out Band 30+ on IgM, which was +. Also you're leaving out 58+ on her IgG. Both those are specific, in addition to those you mentioned.
41 CAN theoretically be something else (though it usually isn't).
The famous Dr. C says: "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
So, it sounds to me that anything other an a - on ALL bands is cause for concern?
So in theory, someone who does not have Lyme, (95% of the population) would have all -'s on their WB?
It would be interesting to find out. Take a random sample of the population (say in Los Angles) and put 30 people through a Igx WB. This would be an interesting study!! When I win the lottery, I might be able to fund something like this.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
Sounds like you have a good & cautious LLMD! The probiotics for a month is a very wise idea-Now you just need to invest in sunscreen! On the bright side, you will have company in the low carb/no sugar diet!
My curiousity regarding the doxy dosage is personal-I am "almost" asymptomatic (if there is such a thing..) and was put on 2 months of doxy via a phone consult with an LLMD who has since retired He said I only showed positive for Band 41-though I am still waiting for an actual copy of my results from my PCP who OK'd the abx-
I am trying to figure out how to proceed & hoping to avoid the cost & travel involved in finding a new LLMD- not too sure I need to keep going with the abx???? Experiences of others sure does help me make some sense of some of this-
So, so sorry that you have worries for your baby!! I am going to have my 19 yr. old daughter tested next week because of some unusual health issues which I am hoping to rule OUT as Lyme-related- Can they test infants? Ugh-hate to think of anyone drawing blood from a baby! Unfortunately my daughter is already an old pro at blood tests...
Good luck to you & your family! And thanks for sharing your info Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Doc told me that lyme was found in seman, but not in vaginal fluid. So women have a greater chance of catching it from there male partners.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Thanks to everyone who has posted on this topic. My wife is on her way to being treated. As for the baby, I think we'll take the watchful waiting approach. If he shows any sign, then we will reconsider. I just hate the thought of putting a baby through antibotics so soon in life.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
It takes some time for any of the tests to show positive, if there is lyme there. It may make sense to "treat prophylactically", as they say.
But there is indeed something to be said for avoiding unnecessary treatment, and while sexual transmission is possible, I can definitely assure you that it's far from a sure thing... Also, I do believe that once the infected partner is being treated, the chances of sexual transmission go way down. Furthermore, I have a feeling that the coinfections such as babesia are far less likely than lyme to be sexually transmitted. Thus if treatment is given immediately at the first sign of symptoms, the odds are very good that a relatively short (from LLMD view) treatment will do the trick (but be sure in that case, that a long enough, strong enough treatment is given!)
But I am far from an expert! If there is indeed a reasonable chance of infection, you don't want to let it go!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
This whole business with the various band readingsis so confusing. I had a lengthy Igenex test about a year ago. My LLDD is very good,but my comprehension is confusing so often. I DO have one question about the passing of lyme to other people not just thru sexual intercourse. What is the LATEST Opinion on KISSING,just good old fashion lip-smackin' show of affection.NO oral intercourse intended ,in fact no intercourse at all. Just that wonderful pasttime,sitting on the couch ,holding hands and"making out"..... I miss all that so much...Been single for s oo long now,,,Been afraid to try even the basics. Anyone got same thots?? Is holding hands and following with a great kissing session O.K?? I send a nice soft romantic kiss to all.......from Bartonella Blues...(babesia as well?
Posts: 42 | From northern calif. | Registered: Mar 2006
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posted
This is sort of controversial too. My LLMD says that even if a person tested 100% positive but has no symptoms he would be reluctant to treat. Mainly because adding abx to their immune system could mess up the balance. I don't know if I totally agree with this though. Why wait an ounce of prevention is worth a pound of cure.
Posts: 649 | From United States | Registered: Dec 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
You can be infected and be a symtpmatic for years untill a stressor comes along to weaken your immune system and allow the dormant lyme to become active.
Glad to hear she will get treated anyway. She has enough positive bands to take this very seriously. Here is a link that describes why you can still have lyme & test CDC negative:
posted
In hinesight, I wish I had done a lot more probiotics and immune support at the begining of treatment. I would also check with your doc on getting other immune support going also, like cat's claw, some king of good mushroom immune stimulator, MG and good b-vitamins. Doxy can hit some of the vitamins that we need.
Posts: 582 | From milwaukee wi | Registered: May 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
This "negative" test looks much more positive than many people here probably have. There are clear indications of ongoing infection in the test and I would take the doctor's advice and pursue treatment. That said - 3 months of doxy alone makes me question whether the doctor knows how to treat Lyme or not.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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My husband has NO symptoms but we are having him tested anyway. My LLMD says that if he tests positive they will NOT treat because he has no symptoms.
(However it does have implications for him passing it back to me etc.) Like other viruses and bacteria the immune system keeps it in check. They only treat if symptoms appear.
I'm not completely convinced, its very hard to know what to do.
Posts: 21 | From Ireland | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
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posted
I don't understand the reluctance of an LLMD to treat if a person tests positive, even if the person is asymptomatic. As many of us know, you can have the infection for a long time, it can suddenly surface and be devastating and very difficult to get rid of. Also, spreading it to others is a real concern. Anyone ever heard of typhoid Mary??? HIV anyone?? Just 2 examples of illnesses where a person can be asymptomatic and yet spread the disease.
The CDC state that they would rather spend money on "known vectors", ticks only please, not the proven transmission via uterus. "Transplacental transmission of B. burgdorferi has been documented in a pregnant woman with Lyme disease who did not receive antimicrobial therapy. She delivered an infant with a congenital heart defect (1)" http://www.cdc.gov/mmwr/preview/mmwrhtml/00000569.htm
We have no way to find out the full ramifications of a person who is positive and yet asymptomatic for now. We have to protect ourselves and the public as best as we can. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Vision, you asked if anybody else had their spouse tested. Well, I had my boyfriend of 4 years tested after I found out I had Lyme.
But I and my boyfriend both used the Bowen test - which is not an antibody test - so this may not be of particular interest to you.
In any event, my boyfriend tested ``maximum positive'' - 1:128 - just like I did. Neither of us was positive for Babs or Ehrlichia.
Our tests were identical, yet my boyfriend has nearly no symptoms.
We cannot be sure that the Lyme bug was passed from me to him because he grew up in New Jersey and remembers finding lots of ticks on him.
Like dana said, it seems that sometimes it takes a stressor or trigger to create the scenario we currently call Lyme Disease.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Are there any guidelines out there for how long you should treat someone who has an negative Igx test and no symptoms. Seems stange to even consider it...
Where did the three months come from? According to my LLMD he will treat three months past the point where I notice 0 Lyme symptoms. So this holds true for my wife. Since she has no symptoms, the three months holds true? I'm just guessing at this.
I'm not opposed to treating her long with abx if it's not causing her any problems. If she seems to be handling all this pretty well, then we might ask the LLMD why not try to keep her on abx for another three. Just to be safe.
She's on day number 6 of probiotics and vit C. I noticed over the past two days she's been very run down. As a matter of fact she's taking a long nap right now.. Its 1:54 PM, and this is not like her. It makes me wonder if she's experiencing a small herx due to the Threelac.
Thanks again to everyone who's added to this topic. You all have given me much food for thought.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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He said I only showed positive for Band 41-though I am still waiting for an actual copy of my results from my PCP who OK'd the abx-
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