I've been having odd symptoms since late last winter of feeling off balance. No description of "vertigo" I have found seems to fit this. I've had a head CT which was basically negative. I also have on-and-off odd feelings in legs or feet, more at night. They don't really feel numb. I'll get a pin prick here and there, but not a real overall pins-and-needles sensation. I was dx'd with a severe b12 deficiency and am taking shots for that. At first after receiving B12 I had some improvement, but it wasn't constant. Symptoms can be nearly gone at times here and there, where I realize I can move and feel so normal I wouldn't notice anything if I weren't looking. I've no decrease in my strength and I am not fatigued. No real aches or pains to speak of, but I am very physically active, walking and working with horses regularly.
I had a Western blot back in March, which I was told was negative. Recently seeing my PCP again (who is also an alternative medicine doctor and is open to Eastern and herbal stuff), he said it was so low there was no concern for Lyme. Reading more myself, I was curious and asked for the actual lab report. This showed all negative except for IgG P41 was present. The little I have found on line seems to indicate this may still mean something. One site said if you didn't have syphillis (RPR was negative), periodontal disease (I don't), or active arthritis symptoms (none), it is Lyme. Now and then my knees feel strained, but it feels more ligament and I feel it is due to fine corrections for balance. Not constant and I would not describe as even close to being pain.
Despite this feeling of going off balance, particularly when looking side to side or in enclosed spaces, I don't think a casual observer would notice anything. Sometimes I feel a little tremulous and holding hands out there may be a slight tremor, but it is mainly my right ring finger that kind of wavers horizontally.
By now, I'm sure anxiety is playing into this as well. I am due to see a neurologist next week. I don't know what he will suggest, but would a spinal tap be more likely to reveal if this is Lyme? I just don't know how to explain the fact I am still able to go all day.
I also suffer from middle insomnia - which could be due to other factors, including anxiety or menopause.
Our dog has been treated several times, a neighbor's horse has had it, and the same neighbor's daughter had it as well. I am in the woods all the time (we live in woods) walking or horseback riding - so if I have not been exposed to Lyme it would be nothing short of miraculous.
I live in Maine.
Any thoughts appreciated.
Posts: 10 | From Maine | Registered: Aug 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
What lab was used for the test?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
band 41 is present for all spirochettes, but is not specific for lyme. However, their are so many variants of Lyme that not all test can accurately pick up on them.
I am CDC +, my daughter had the EM rash and developed symptoms consistent with lyme, but to this day only has band 41 present.
I think it is something to look into for sure.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
PS - I never had a rash with a bite. I get reactions from dog ticks no matter how long they are on me. NEver had any unexplained illness, etc. Well, for many years I'll get a short-lived rash over my neck and upper chest, sparing breasts, that seems to come on with any minor "bug." But it doesn't last. It is not raised, itchy, or anything else.
Posts: 10 | From Maine | Registered: Aug 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would find a LLMD to help you. I never had a bulls eye but did have rashes that come and go esp. on neck.
They like to call those Lupus like...Mine was Lyme. My first test only had one band unable to identify, so at least you have a small start...
I had to challenge to get a positive for 3 mths. and then tested with Igenex after going off.
Pushing 2 yrs now and a lot better... Don't let them do you wrong. If you go outside I would use protection. Each time you are bit is another chance to get more infections.
-------------------- 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
Thank you! The rash is rather blotchy, lacy type, and only on neck and upper trunk. Haven't seen it lately - happened so many times without any symptoms other than a cold or other minor type illness that I figured it was just related to that or a slight fever - and maybe it is - but still...
Posts: 10 | From Maine | Registered: Aug 2010
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posted
I did not have the rash either. Different spirochettes are...syphyllis, leptospirosis, H pylori, and some kind that lives in the mouth. If you have had recent dental work, sometimes that can cause a + band 41. Regardless, I would consult with an LLMD and go from there. Best of luck
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Check my calendar. Relieved to see the Lyme test was drawn two days before my routine cleaning, so that isn't an issue.
Posts: 10 | From Maine | Registered: Aug 2010
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I do not remember the "link" I got the following info from. I have this copied and pasted into my several topics on Lyme.
I too am Positive for the 41 Band, IGG and IGM.
I'm sorry this is so long, but thought you might like to see this info.
THURSDAY, SEPTEMBER 18, 2008
All I got was a 41band!
The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this. It cross reacts with other spirochetes. Maybe not. Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test.
IgeneX considers it specific, it is marked with a double asterisk. I have reviewing the literature. Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out. What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say?
These diseases can be ruled out by clinical presentations. Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme. I am quoting a paper co-authored by Allen Steere, circa 1984. Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no. The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms.
The DNA structure of this spirochete has beenworked out. It is very different from Borrelia. The 41 band reacts to aflagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They areantigenically different. This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd. In fact, the best known dental spirochete does not react with the 41 band. Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes. It is always qualified with the word "may." There is no evidence to support this theory. All are in agreement that the 41band is specific for spirochetes.
The other spirochetes known to cause this cross reaction can easily be ruled out! To quote Carl Sagan: "When all the likely causes of an effect have been ruled out, then that which remains, no matter how unlikely it appears, must be the truth." You only have a 41 band. The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?
Posted by Lyme report: Montgomery County, MDat 4:26 PM
I hope this helped you. Good Luck to you.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
41 on a Western Blot, on it's own, especially in the IgG, is not anything to worry about.
If you have had your teeth cleaned in the past few years (however long IgG bands can last), you may show that band. There are mouth spirochetes that can commonly get into the bloodstream during tooth cleaning.
41 on the IgM could be an indicator of Lyme, but it could also not be an indicator of Lyme.
Since your symptoms don't seem to be disabling, I wouldn't persue treatment, based on what you've said. But I guess it just depends how bad your symptoms are. Lyme is the great imitator, so who knows when it's there and when it's not. There just isn't any laboratory evidence of Lyme in your case.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I had a 41+ on both the IgM & the IgG thru Igenex. Out of all the information I've read, ANY positive is significant. My symptoms were similar to yours, but came all of a sudden 3 weeks after the bite. I never had a rash of any kind. Funny thing though, I had this red spot on my right arm. Got bigger, finally just make a hard, purple bump after 6 weeks. Opened up was blood. Never verified what it was nor could the doc. It all depends on the person. Remember that LYme is a clinical diagnosis.....symptoms only to rely diagnosis.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Just wanted to let everyone know my source....it was Dr. H from Igenex that said that patients will show a 41 if they have had their teeth cleaned in the last 6-12 months. Not sure if he was talking about IgM or IgG.
I would imagine a mouth cut could do the same thing. He didn't say you needed to have peridontal disease.
41 is important to Lyme because Lyme can make it show up, but by the same token, it is not specific enough to rule Lyme in. So in that case, you need to go by SYMPTOMS, and RETEST later, after antibiotics.
Posts: 4590 | From Midwest | Registered: Jun 2008
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