posted
I just tested +ve on IGG and IND on IGM after almost 10yrs of on and off health issues - with no other answer found by western medicine. I am clinging to the hope that Lyme will be the answer and then someone sent me this link saying I should be careful about believing anything a "supposed LLMD" might tell me. http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html Are we all being taken for a ride? I'm so upset, worried by this information - which apparently was updated in summer this year. Can anyone shed any light? Have any of you seen this report and what would your response be. I don't want anyone to take away my hope for cure but at the same time, I don't want to make myself more sick by following potentially ill-informed advice. I just don't know what to think anymore. Please someone, tell me that this report is what is bogus.
Posts: 42 | From new york | Registered: Dec 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Do not let those sites bother you. There is a quack report for just about EVERYTHING...
Keep that in mind...
Its not YOU.. its THEM>
I do not know about your case.... but.. have found that Lyme is real and though always keep your eyes and ears out for anything else you have that is treatable.
Most of the time though the causes point back to lyme and its co infections.
IMO
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I never know if Mr. McSweegan may be right or not. I believe he's considered the devil at Lymenet.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If you tested IgG positive, you have most likely had Lyme at some point in your life. (I am saying "most likely" in case a virus or multiple viruses cross react with the bands you showed, but let's just say Lyme exposure is likely)
It is up to you what you choose to do with that information from there. I am basically saying to listen to your body and your intuition, as well as the advice of professionals.
You might retest the Western Blot IgM after provoking things with antibiotics. Often more bands will show positive later in treatment, or after being provoked, so in a couple months, you may have a full blown positive on your IgM.
I approach most things with a healthy amount of skepticism, but I feel I am making the right decision by treating. The decision is an individual one. None of what I read on Quackwatch comes as a shock to me, because I've already evaluated this decision carefully.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Stephen Barrett is a pro big pharma anti-holistic quack. Anything natural that hasn't been extensively studied is a bunch of quackery according to him.
Reading just about anything on that website personally gives me a laugh. Read that quackery, and become close-minded.
Just my opinion. It has nothing to do with Lyme, I just really don't like the guy who runs the site.
[ 12-12-2009, 02:07 AM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Keep in mind that there is a an enormous, nasty, acrimonious debate about the existence of chrnoci lyme disease.
Even for people who absolutely clearly have the disease, 98% of doctors out there do not believe in chronic lyme (even when they have literally been able to isolate pieces of the lyme bacteria from patients, they still do not believe in chronic lyme).
This debate has been going on for several decades now, and there are thousands of pages ot testimony, on both sides.
Recently, the infectious disease society of america (which does not believe in the disease) was found guidlty of gross violations in drafting its medical dogma on the disease
Teh best advice I can give you is to go to the lyme disease association website and read up on the disease, everything from teh testing to teh treatments.
Then, you will have to decide for yourself what to do next.
You can also go the the infectious disease society website, they had a review of the guidelines (they were forced to by law), and you can here both sides of the argument.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
In my not-so-humble-opinion, that article is complete rubbish. They lost me when they quoted the IDSA.
Posts: 50 | From Midwest | Registered: Nov 2009
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posted
A positive IgG is a positive IgG. Ignore the test result at your own risk. Ten more years of illness coming??? (without lyme treatment)
McSweegan IS evil and so is quackwatch.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
KMJ~ As in any illness, it is essential to figure out what is causing the problem. So, first off (and I bet you've done this)...have your doctor(s) test and check you for anything and everything that they can think of that may be making you sick.
If all those tests come back negative, then think about environmental problems, allergies, and infectious pathogens.
Lyme is one infectious pathogen to consider, as is enterovirus, HHV-6, EBV, Cpn and others.
Test for lots of things, and treat what is most obviously wrong. If you have a positive IgG for lyme, get a copy of those results, know what lab it came from, and what bands were positive. Lyme could certainly be an issue for you.
Do lots of reading, find some good doctors to help you and good luck in your journey to get well.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
There a quite a few markers which indicate chronic sickness (one of them is symptoms). It took me several months of research and tests to decided for myself whether its warranted to address the condition.
There could be many things affecting your health and bacterial origin is just one of them. It could be your virus, mold ,heavy metals, allergies ,diet. By researching, analyzing and correlating those issues with your labs and symptoms you can find what is most likely culprit for you.
It is not easy and requires time and dedication, as well as cooperative PCP to run labs, but no one else is going to do it for you. Your health is entirely in your hands and is entirely your responsibility. There is no easy answer for it and no single labs explaining everything.
Posts: 856 | From MA | Registered: Jul 2009
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posted
"Although decades of medical practice and recent clinical trials suggest otherwise [20], many Lyme patients still undergo expensive, long-term intravenous antibiotic treatments."
I can see why someone new to Lyme may be confused. But, they have no proof that long term antibiotics does not work.
People on this board others like it and those who've left because they got well, are living proof that it does work - just takes a long time.
I wish I could go back in time and not have taken all those expensive, time consuming, and possibly dangerous tests, and just believed what I knew in my heart - it was still in me, Lyme and Babesia.
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
A positive test is a positive test. False negatives are the biggest concern when it comes to Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It might be both......it is real and you are clinging to it.
We all want to survive!
It is a personal decision whether you treat for lyme or not. No one can tell you what you should do.
For me, I would rather treat for something than to do nothing and just accept defeat.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
It could be Lyme, or it could easily be something else. Quackwatch is generally bogus, yes, and as those from around here will tell you this is the opinion of many medical professionals.
Every person's disease pattern is different. You finally have a starting point with your Lyme diagnosis. I suggest treating and seeing if you get a response of any sort. Find a practitioner you are comfortable with, and in my opinion, begin a antibiotic regimen, IV and/or PO. Lyme has many forms including two that regular antibiotics can't touch: cell wall deficient "L forms" and "cyst" forms. This is one reason why many patients get slightly better after the IDSA suggested 28 days of rocephin, then get worse again. The antibiotic kills many bacteria, but they adapt and shift into these other physical forms, often hiding in tissue. This is another reason why antigen testing is so difficult, as the bacteria aren't simply hanging around the blood stream in an accessible form. Thus, be sure to include a "Cyst-busting" drug such as Flagyl or preferably Tindamax. You may also want to add Alinia to one of these two if you are able to get coverage for it, as it has some cyst busting potential as well but it also deals with a multitude of more complex organisms, which brings me to my next point.
Besides the Lyme bacteria itself, the tick that bit you could have harbored a number of other pathogens. Babesia, a relative of malaria, is common and difficult/expensive to treat with many symptoms of its own. Bartonella is common as well. Less common, or perhaps less diagnosed are the mycoplasma family of organisms, as well as viruses like XMRV which is newly discovered in humans (thought to cross over from small mammals). These are collectively referred to as "coinfections". Many patients who don't get better after conventional IDSA Lyme treatment often have some coinfection that gives similar symptoms to Lyme itself, in addition to the possibility that the Lyme itself wasn't caught early enough to be beaten into submission. I strongly advise co-infection testing and treatment as well.
In addition, there may be certain pathogens already in your body, such as Epstine-Barr virus (If you've ever had Mononucleosis you've had EB) and similar herpetic viruses, that may have reactivated because of your Lyme infection. They too are another avenue of investigation to help get you well. In summary, testing and treatment should be investigated for...
Bacterial pathogens (Lyme itself, Bartonella, Erlichosis, and less common infections like relapsing fever.) Protazoa and more complex organisms (Babesia microti/duncani/WA1, Toxoplasma Gondii etc..) Viruses, infective recently or latent and reactivated (EBV, CMV, HHV6, XMRV)
There IS a lot of quackery in the "Lyme community". There are treatments that don't work, there are those that speak without evidence, there are people trying to make money from the ill and desperate, and there are those that refuse to subject their methodology to scrutiny. Be wary, be suspicious, but keep your mind open and inquiring.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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