Lyme questions
- Thread starter Alexandra90
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Hugo
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I do think most are rather reliable when its Elisa or Elispot. I dont know about Tickplex since its new but my doctor where I live seems to like it, he knows the researchers so his not neutral though. The CD57 is something I would not trust to much, I think its a to broad indicator and could mean anything. Best kind of test is an PCR on synovial fluid but that may be hard to get.A PCR is considerd trustworthy in ordinary healthcare aswell, its not an immune response its the lyme bacteria that detect. I dont know if you tested your spinal fluid at a neurogist but I would recommend that and check for neuroborrelios and other stuff like MS.
That's why I'm wondering.. I had an allergic reaction to an IV antibiotic, fortunately in the ER. It was an immediate reaction and pretty serious so would speculate in most cases that would be readily apparent. Many of us are so sensitive to medications, the possibility of sensitivities came to mind. Antibiotics also come with side effects. Some milder ones such as a rash stomach problems might take several days
That's why I'm asking. How do you tell the difference or can you?
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svetoslav80
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Not really. I guess I was just spontaneously trying to counteract the Lyme paranoia on this forum which sometimes comes a little too much to me. So, better do the Lyme test, though I'm not sure how reliable it is.
Nope. That´s why I would go to a doctor with the question, and then it all comes back to which doctor to go to. I would probably go to one that acknowledges the possibility that someone might not be positive for Lyme on the two-tier test and yet still have Lyme, because that would tell me that they know the first thing about the disease.
Contrary to what some people think, an infectious disease would consider this possibility as they know the ins and out of lyme disease, do admit it's a problem and may even give a course of antibiotics to see if there's any improvement. They go through years of specialized training. Compare this to an LLMD who has very little training, if any, diagnoses many with lyme or chronic lyme which doesn't even exist vs post treatment lyme disease or untreated lyme disease which have strong scientific evidence behind them.There are no definitive studies showing long term treatments with antibiotics are effective for the treatment of Lyne disease.
Or like this doctor. Dr. Danial Cameron who was recently disciplined by the state of New York. He is past president of LLMD association as well as writing the guidelines for LLMDs' so is quite representative of LLMD doctor's approach to the treatment of Lyme disease and not an outlier among the outliers.
This article has some very informative links.
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Art Vandelay
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I get a Herx reaction to a range of antibiotics from different classes as well as to some herbal antibiotics so it is not likely to be an allergy.
Herx reaction symptoms follow a fairly specific pattern that was first noticed and defined over 100 years ago.
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Wow, that´s a broad brush! I have met one ID doctor, and one LLMD in my life, and guess which one knew the first thing about Yersinia?
Mel9
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But in Australia infectious disease doctors do not believe Lyme or Lyme-like diseases exist
IreneF
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They can't believe that Lyme doesn't exist. It's well defined, it has a causative organism, is spread by ticks, and treated with antibiotics.
taniaaust1
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What Mel said is correct, our medical association and nearly all doctors here dont believe it exists here in Australia. This is even know people in Australia have actually died of lyme who never travelled overseas (and tested postive to it).
There was some well known guy (I think he was a TV presenter?) who this happened too who died due to this.
.....
I just tried to find the story of one of the ones who have died here due their lyme not being treated and just found this other person. (If u get lyme in Australia u are screwed even if your lyme tests come back positive most can get no lyme treatment at all cause they dont believe we have lyme here)
http://www.watoday.com.au/wa-news/p...ike-disease-debate-rages-20170510-gw1ztl.html "
MAY 16 2017
Perth woman dismissed as mentally ill while 'Lyme-like disease' debate rages "
"
But she found a tick on the side of her stomach on Christmas Eve, while holidaying in Kalbarri, and within 24 hours was in hospital.
Ms Bool before she was bitten by a tick, and Ms Bool now.
"It started with my leg getting a bit sore. Then I thought it was gastro…then I lost control of my bladder."
Ms Bool was hospitalised three times during her holiday, then transferred to Geraldton, then Armadale. She was eventually sent home with an "unknown virus".
She said no one looked at her tick-bite or rash.
Fast forward three years and Ms Bool is almost permanently hospitalised with symptoms including seizures that shake her whole body and blind her with pain, sometimes leading to temporary paralysis.
Last year one particularly severe seizure left her unable to swallow and without the use of her right hand.
But referring to her condition as Lyme disease or 'lyme-like' comes with controversy. "
............
http://www.theherald.com.au/story/3019223/tahlias-battle-with-lyme-disease/ Another person who has it here
..........
here's somene in another australia state
https://www.northernstar.com.au/news/he-cured-his-lyme-disease/1700078/
"
At the start I didn't know what was wrong with me... I was paralysed and I was sick - then it sort of dawned on me that maybe it was from this tick bite I received many years ago and maybe the massage brought it on," Mr Jones said.
After a six-week stay in hospital during which he could hardly move or sleep, he emerged in a wheelchair.
"I couldn't even pick up a cup of tea, let alone sit down or stand up... there was nothing left of me."
An alternative medicine practitioner suggested that he had lyme, a bacterial disease not officially recognised as existing in Australia."
......
http://www.abc.net.au/news/2013-08-02/lyme-disease/4861916
"A statement from the WA Department of Health said there is no conclusive evidence that Lyme disease occurs in Australia and certainly doesn't exist in Western Australia."
the article says . "There have been two recent deaths as a result of Lyme disease in WA in the past three months."
If lyme killed 2 people in just one australian state in only a 3 mths period, just imagine how many must be dying of it in Australia.
@Kina @Sushi (how do I make the text smaller??)
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I think it is the same situation here in Sweden.
IreneF
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There's a difference between "they don't believe it exists" and "they don't believe it exists here". Emergent tick-borne diseases are a thing. Lyme has expanded dramatically in the US.
@Alexandra90, as members have pointed out, TBD testing is rife with problems. That just means you have to be a little savvy as to which tests to embrace - and you should really learn why those tests matter.
Ideally you want a direct antigen test, as in culturing Bb. This is very rarely done. It typically is difficult and very expensive. It's pretty much spurned as not being worth the effort 99% of the time.
PCR also tests directly for Bb antigens, but it isn't very good at picking up its scent. PCR has a success rate that is generally less than what you might feel good about.
Indirect tests, i.e., those that look for antibodies we produce internally to repel the infection, are better equipped to generate actual results. But those are frequently the subject of debates themselves: Either the rules governing the decyphering of the antibody reports are too strict, or they are too lenient.
Bottom line, if one does generate a positive result with an antibody test, all this actually signifies is that you have been infected with Borrelia at one time in your life.. Even the IgM/IgG distinction gets muddled in this mess.
So, the numbers suggest you run tests that can at least demonstrate to you that you have been infected at some time. They may also suggest you are still infected, but they cannot prove that. The more tests you can afford, the more insight you can generate.
I recommend the Western Blot. This is perhaps the most important, because it provides glimpses into more than one part of the spirochete, It looks at 10 proteins (some vendors will look at more), and since this is kinda like case building, how many proteins, and which proteins can and often do matter.
I also recommend the C6 Peptide. I think it provides a good base line number. This baseline number would be important should your values rise -- rising Bb values suggest active infection.
There are other tests - like the pcr or the ELISPOT. Personally, I think any salient information may help. You will be putting together a puzzle, potentially. To this end, more information is a plus.
Also, remember, becuase you are in Sweden, you will be looking for at least three types of Lyme - sensu strico, garinii and afzelli. Also B miyamotoi.
Edited to add: I almost forgot one of the most important points. If you test negative, this does not necessarily mean you do not have a strain of Lyme. There are 100's of strains. More to the point, Lyme has the reputation of abrogating one's immune system. Pretty much all tests for Bb bring serious issues to the table; same with treatments once the disease has progressed to late stage. It's not easy - if it were, there'd be no Lyme wars.
Ideally you want a direct antigen test, as in culturing Bb. This is very rarely done. It typically is difficult and very expensive. It's pretty much spurned as not being worth the effort 99% of the time.
PCR also tests directly for Bb antigens, but it isn't very good at picking up its scent. PCR has a success rate that is generally less than what you might feel good about.
Indirect tests, i.e., those that look for antibodies we produce internally to repel the infection, are better equipped to generate actual results. But those are frequently the subject of debates themselves: Either the rules governing the decyphering of the antibody reports are too strict, or they are too lenient.
Bottom line, if one does generate a positive result with an antibody test, all this actually signifies is that you have been infected with Borrelia at one time in your life.. Even the IgM/IgG distinction gets muddled in this mess.
So, the numbers suggest you run tests that can at least demonstrate to you that you have been infected at some time. They may also suggest you are still infected, but they cannot prove that. The more tests you can afford, the more insight you can generate.
I recommend the Western Blot. This is perhaps the most important, because it provides glimpses into more than one part of the spirochete, It looks at 10 proteins (some vendors will look at more), and since this is kinda like case building, how many proteins, and which proteins can and often do matter.
I also recommend the C6 Peptide. I think it provides a good base line number. This baseline number would be important should your values rise -- rising Bb values suggest active infection.
There are other tests - like the pcr or the ELISPOT. Personally, I think any salient information may help. You will be putting together a puzzle, potentially. To this end, more information is a plus.
Also, remember, becuase you are in Sweden, you will be looking for at least three types of Lyme - sensu strico, garinii and afzelli. Also B miyamotoi.
Edited to add: I almost forgot one of the most important points. If you test negative, this does not necessarily mean you do not have a strain of Lyme. There are 100's of strains. More to the point, Lyme has the reputation of abrogating one's immune system. Pretty much all tests for Bb bring serious issues to the table; same with treatments once the disease has progressed to late stage. It's not easy - if it were, there'd be no Lyme wars.
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@Alexandra90
I understand your concerns about getting a reliable test, and skepticism regarding how some tests give you positive results for a whole host of issues. At the same time I was tested for Lyme, the lab tested for co-infections and all kinds of other things....I ended up with a positive Lyme diagnosis of 3 or more months (IgM protein bands), bartonella, babesia, salmonella, pneumonia, epstein-barr virus, etc. etc.
The way I understand it, the Lyme disease bacteria and those from the co-infections babesia and bartonella are what is causing my current symptoms, and what I'm trying to treat. All that other stuff is the result of daily life- something like 90% of American adults are positive for the epstein-barr virus and never demonstrate symptoms, and I had a bout of pneumonia as a child for which I still posses antibodies. Adults with healthy immune systems may technically be infected with things like salmonella and EBV and not "have" any illness because their immune systems successfully deal with the issue and produce no symptoms. When people like us whose immune systems are overwhelmed with an active problem, such as Lyme, take these tests, we come up positive for things that our immune systems already dealt with in the past. We are also at higher risk of experiencing symptoms of salmonella, shingles, etc, because we are immunocompromised.
I hope this makes sense. This is how my mother (who is one of my care advocates) and I understand my results, but we are far from experts. This may be a case of the blind leading the blind.
I understand your concerns about getting a reliable test, and skepticism regarding how some tests give you positive results for a whole host of issues. At the same time I was tested for Lyme, the lab tested for co-infections and all kinds of other things....I ended up with a positive Lyme diagnosis of 3 or more months (IgM protein bands), bartonella, babesia, salmonella, pneumonia, epstein-barr virus, etc. etc.
The way I understand it, the Lyme disease bacteria and those from the co-infections babesia and bartonella are what is causing my current symptoms, and what I'm trying to treat. All that other stuff is the result of daily life- something like 90% of American adults are positive for the epstein-barr virus and never demonstrate symptoms, and I had a bout of pneumonia as a child for which I still posses antibodies. Adults with healthy immune systems may technically be infected with things like salmonella and EBV and not "have" any illness because their immune systems successfully deal with the issue and produce no symptoms. When people like us whose immune systems are overwhelmed with an active problem, such as Lyme, take these tests, we come up positive for things that our immune systems already dealt with in the past. We are also at higher risk of experiencing symptoms of salmonella, shingles, etc, because we are immunocompromised.
I hope this makes sense. This is how my mother (who is one of my care advocates) and I understand my results, but we are far from experts. This may be a case of the blind leading the blind.
@Alexandra90: Did you have a Lyme test in the meanwhile and what was the result?
Skippa
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The situation in Oz is weird (well, it's often weird everywhere tbh) because I was watching a Steve Irwin documentary about 10 years ago-ish and a dog (I think his) had a Tick and then got all lethargic, so Steve does his usual "cor blimey cobber, Lyme is a ree-uyl risk for moy pooch, if this little fella gets it he's a gonner, it's a rre-uyl killer you gotta check cobber this arvo bogan strewth g'day" etc etc
He basically goes on about Lyme being a real risk, in Australia, so once again the Veterinary world is ahead of the "human world".
Eta: RIP
He basically goes on about Lyme being a real risk, in Australia, so once again the Veterinary world is ahead of the "human world".
Eta: RIP
Art Vandelay
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Yep, I was talking to a friend who is a vet and she mentioned that Lyme is an important part of their training. But according to doctors and the government, Lyme disease for humans doesn't exist in Australia. How does that work?
Was it actually Lyme in the dogs? Because there's also a tick which can cause paralysis that pops up a lot on Bondi Vet.
Art Vandelay
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Yes, she mentioned 'borrelia' by name.