Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
hey guys, thanks for all your advice so far, i don't know what i would do without this group!
anyway, i had yet another Elisa test a few weeks ago, only difference is that i told the blood tech my situation and she seemed to know what i was talking about! she ordered the western blot SEPERATE from the Elisa and guess what, after all these years of neg Elisa tests, i had a band show up on the western blot!!!
it was the p41 on both the IgG and the IgM. from what i understand, this means that i have lyme, syphilis, aids, or severe periodontal disease.
since, i was raped at age 14, i have had tests done over and over and over to make sure i did not get any STD's. i had my most recent HIV and syphilis tests just a few months ago. i do understand that syphilis is much like lyme in some ways and that they both have diagnostic problems. i actually have a dentist appt. tomorrow, but am fairly confident that i do not have any severe periodontal disease!
anyway, i am soooo excited that i want to jump up and down, if only i wasn't too weak and tired... i am curious is any of you know if i am correct from the research i have done. my primary said that from what he understands, it is not enough bands to diagnose(he will soon be receiving the ILADS guidelines).
the infectious disease doc who i forced to order the test, even after he said he thought it was highly unlikely i had lyme(please refer to my last discussion post for that), told me that my tests were all negative. did he do something wrong or is it just me?
anyway, i had yet another Elisa test a few weeks ago, only difference is that i told the blood tech my situation and she seemed to know what i was talking about! she ordered the western blot SEPERATE from the Elisa and guess what, after all these years of neg Elisa tests, i had a band show up on the western blot!!!
it was the p41 on both the IgG and the IgM. from what i understand, this means that i have lyme, syphilis, aids, or severe periodontal disease.
since, i was raped at age 14, i have had tests done over and over and over to make sure i did not get any STD's. i had my most recent HIV and syphilis tests just a few months ago. i do understand that syphilis is much like lyme in some ways and that they both have diagnostic problems. i actually have a dentist appt. tomorrow, but am fairly confident that i do not have any severe periodontal disease!
anyway, i am soooo excited that i want to jump up and down, if only i wasn't too weak and tired... i am curious is any of you know if i am correct from the research i have done. my primary said that from what he understands, it is not enough bands to diagnose(he will soon be receiving the ILADS guidelines).
the infectious disease doc who i forced to order the test, even after he said he thought it was highly unlikely i had lyme(please refer to my last discussion post for that), told me that my tests were all negative. did he do something wrong or is it just me?
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
No test for Lyme is completely reliable, and results can vary by lab. It is important to be tested by a Lyme lab such as IgeneX. They use more sensitive testing and list more bands on the Western Blot.
Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.
The CDC requires several bands to be postive for the test to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are positive. Some are specific for Lyme.
Band 41 is often the first to show in a Lyme infection.
Below is the breakdown of the Western Blot bands:
9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
I hope you can see a Lyme doctor soon and be properly evaluated.
I hope I don't have periodontal disease! (My teeth do bleed a lot but my doctor and dentist don't seem too concerned.)
My feeling is that if even one band shows up Lyme is probably involved, but the CDC only wants those with 5 bands reported. Does anyone know?
Find a doctor who will sent in the tests to IgeneX. They have more sensitive testing. I'm waiting on my results from them.
Lymebytes can help you find a LLMD near you.
I remember when I got my diagnosis. I called my husband all excited. "I have a disease! I'm not losing my mind! It's just infected."
I was so relieved to know that there was one cause for all the different symptoms and explanation for why I was not responding to traditional treatment for my previous (mis) diagnosis.
Even if yoy have to travel - you need to find a Lyme knowledgeable doctor. Lyme affects so many systems and Lyme disease treatment is a stressor on the body. You need a doctor who can monitor your entire health as you go through treatment and if needed aid your body in rebuilding and strengthening its internal systems.
By the way - the CDC still does not accept my case as Lyme disease but my Igenex test was very conclusive.
the only problem with it is that the insurance company won't like it(cuz of idsa and cdc writings...) and they may not want to pay for anything at all...
even dr. s of the idsa guidelines and that recent bad article on chronic lyme in new england journal of medicine even says that band 41 is a for sure diagnosis of lyme if you have no syphilis, aids, or serious periodontal disease.
i don't see the point in having to pay all that money to have my blood sent to the specialized lab for lyme at this time because my western blot showed lyme and i have enough clinical symptoms and past tick exposure to certainly justify that i DO have lyme no doubt.
another problem i have with these bands is that the CDC reporting criteria is not supposed to interfere with my personal dr.'s diagnosis. their criteria were not made for that purpose from what i understand. they have 10-13 year old "trials" and "studies" presented as FACTS on their websites, but if you read the fine print they contradict themselves about lots of things...
the criminal part of it is not the doc's trying to help me now, but the ones who used elisa and completely ruled out lyme with it even though they are not supposed to just based on neg. elisa. i have gone all these years with pain and suffering and just wanting to die sometimes and i just want my life back!
i thought about asking my primary or some other doc to order me every lyme test available(including another blot-hopefully including bands 31 and 34)and also all the tests they have for the co-infections. if i get LUCKY and get my positive tests thru labcorp, i would be much luckier and have about a grand less that i wouldn't need to borrow for bloodwork...
thanks again!
He said something key though, and I think this is the kicker. If you're trying to get your insurance to cover your treatment, you need to pass a test by CDC guidelines. Insurance usually won't accept a clinical diagnosis. So fighting with your ID specialist isn't going to help you anyway.
He also said that when seeing a specialist, especially an ID specialist, don't ever directly ask about Lyme. They'll label you a lyme freak and write you a scrip for prozac. Ask as many questions as possible and make them say Lyme before you ever bring it up. An ID specialist is gonna follow IDSA guidelines, and they say that you probably don't have Lyme, and if you do take this pill, it'll make you better, if it doesn't, you have post lyme syndrome and you're stuck with it.
You should definitely try to find yourself an LLMD...
All this to say, you can be treated for Lyme and coinfections, without the word being used, for insurance purposes.
such as (over the course of time) hypotension, thyroid nodule, insomnia, fatigue, migraines, abdominal pain, etc. However, on school forms that were needed for my daughter to attend school part-time or receive homebound services, she wrote lyme or tickborne infection.....