klutzo
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posted
The Bowen Research and Training Institute has moved to a small city about 2 hrs. away from it's old location near me.
In addition, their web site now makes no mention at all of the supposedly fool proof QRiBb test for Lyme they used to offer, and upon which I've based 3 1/2 yrs. of treatment.
What happened to all their research with Lida Mattman, PhD., which showed this to be such an accurate test?
Now they are pushing some new flow cytometry testing that they are doing research on, and offering W. Blots instead.
They used to say all FMS was Lyme, but now they are suddenly seperating the two!
Since I've forked out $500 for two QRiBb tests, I e-mailed them to ask why they had dropped the QRiBb, and if they still considered previous results to be valid. No response at all....how professional (not).
Anyone have any inside scoop on what is going on?
Ticked off, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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I emailed them a while ago asking about the new test and haven't got a reply either.
I didn't realise they had moved.
Very strange.
Are you sure they have stopped doing the Q-RIBb test? Maybe you should try phoning them?
I had the Q-RIBb test and was positive at 1:64, this was about 6 months ago and I started getting treated based on that test.
I had more Lyme tests to confirm it just a few weeks ago and got the results this week. LTT-MELISA from Germany was positive, Igenex IgG was positive and Immunosciences was positive. So the Q-RIBb test was spot on in my case. I am not so sure about people with very small titre's of 1:2, 1:4, etc. I spoke to someone who had 1:8 and never got better on ABX. I would personally recommend people with low titres to have it confirmed in other labs, because you can't be sure low amounts of Bb is causing your health issues.
Posts: 263 | From UK | Registered: Mar 2006
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lpkayak
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my llmd-whi i really trust-cautioned me about doing too much with them a few years ago.
what bothers me the most now (i listened to him and didn't base tx on the test) is i have a quate from them about borellia being found in flys, mosquitoes etc---other critters than ticks fromd them. i doind't know whweere the quote came from for a long time and just came across it recetntly...sorry---my fingers are real bad today---i tend to believe borrelia is in more critters than ticks-but i would like to have some credible research to back that up...anyo one else know?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TerryK
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Looks like there are 2 different websites. Can't answer your question, but this could be an attempt to separate research from other business. Looks like Dr Whittaker is concentrating on writing. Think it is her daughter that runs the Bowen Institute.
Dr Whitaker herself has Lyme and that is how she got interested in research. When hubby and I met her in 2002 she walked with a cane and suffered from light sensitivity. Think she may be approaching age 70 now.
Didn't get around to it last week, but do plan to call this week and see what is going on with testing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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klutzo
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Hi all, Bea has answered my question. Take a look at the link for the new site she provided (thanks Bea!).
I did not find that site when I looked, only the older one, which has no more mention of QRiBb. Apparently they still stand behind the test. The new site has more explanation and lots of pictures.
My original test before tx showed a dilution of 1:128, the highest there is. After 8 mos. of tx with herbals only, it was down to 1:32. I have not been tested since, preferring to rely on symptoms as the all important marker, and by that marker, I am not any better.
This may be wrong, but I was told that people below 1:8 usually do not have symptoms anymore, and only need to make sure they stay down there.
However, there has always been controversy about whether the serial dilution is worth much, since borrelia could just be hiding in your tissues, and the test measures blood levels only.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Maybe it takes a while to get it all on the web site. I have called 3x in the last 6months and they are always forthcoming in answering any and all questions that I have had.
Hang in I think this test will be better than ever, give them a couple of months.
I do wish they would have this study published. It has gone on for so many years. When you pay for the test, you are making a donation to a non-profit. It seems like it should be easily reproduced at another lab.
They do have a disclaimer at the website, but it is not for the test, but for the website info.
lpkayak
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terryk-thank you so much! preventing tick bites is important but there is so much more to it...and all this talk of how long it's on you etc...to me it's such a waste of energy to argue about it. when a duck says "oh we don't have any here"..or "it's the wrong time of the year"..just one more excuse to start someone down a torturous rest of their life
i think i do remember something about the test being "experimental". i was in ny and that was why ins wouldn't pay or something
it would b really good if the test did accurattely tell you if you were getting better...so hard to figure out where the symptoms come from: lyme, yeast, co infects, parasites and for me concussion...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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klutzo
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I was told they do have an FDA patent for the QRiBb test, but that it takes another ten years to get FDA approval, and it has not been that long yet. It probably also takes big bucks.
I don't know what their new facility is like, but the one they had here was a small, hole-in-the-wall store front, in a run down strip mall. It did not inspire confidence, but on the other hand, maybe they are putting all their money into research, not fancy surroundings.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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klutzo
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MarsNY, I saw the inside too. It was a dinky, dark little office with one desk, but I could not see into the back area. I only live 12 miles from where they used to be located, so for my first test, I carried my blood sample from the doctor's office directly to Bowen to make sure it got there in time. (They only accept it until 10:30 am of the morning after it's drawn).
You can Fed Ex blood to them from almost anywhere, if you can get it there within 16 hrs. I know someone who sent her blood from England to be tested.
A major criticism of them is that all their tests come up positive, but I actually do know one person who has all the symptoms who had a negative Bowen test.
They counter that people who are willing to donate $250 for the test, and fill out the long questionnaire they require, are already pretty sure they have Lyme, so the high rate of positives is to be expected.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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klutzo
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Nimzovich, No, there was no disclaimer. The paperwork consists primarily of a long symptom questionnaire, similar to the one Dr. B uses to assess the liklihood of Lyme infection.
This questionnaire has to be done over each time you have the test. That way they can compare your number and severity of symptoms from one time to the next.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Truthfinder
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Thanks Bea for the link to the LymeResearch website. I didn't even know this website existed. How did you find it?
No sure if they are claiming any connection to the Bowen Institute any longer..... and unable to tell how you can get a Q-RIBb test now without going through one of their ``protocol'' doctors.... many questions...
I do know that back at Bowen, they appear to be excited about new developments and the future of the Bowen Lab. I have had some contact with Bowen associates and employees over the past couple of months. Nothing lately, though.
I do know that Bowen is hoping that the new flow cytometry test will be a test more readily recognized and accepted by the CDC. Well, I'm all for that (assuming the test is reliable and accurate, of course.)
Dr. Whitaker had a stroke early this year, and I think that is one of the reasons she decided to retire from involvement in the Bowen Institute.
Nimz, I don't think you can just run out and have your paper published in a peer-reviewed journal. The article has to be accepted by the journal for publication, and with the negative political hype surrounding the Bowen test.... well, you see my point.
And, yes, when you have the Bowen test, there is a disclaimer from Bowen that the Q-RIBb test is considered for ``research purposes'' or something like that. I remember reading it when I filled out the questionnaire that comes with the other test paperwork.
Ann, you are right - the Bowen test is easily done at other labs with the right equipment. It can be done just as easily in doctors' offices in about 20 minutes, assuming this is done in accordance with Patent regulations.
Klutzo, they have a U.S. Patent on the Q-RIBb test, not an FDA patent. Is there such a thing?
Also, the cost of the Q-RIBb was $150, not $250. It was $250 only if you wanted tests for co-infections done also.
Anyway, Bowen applied for FDA approval for the Q-RIBb test ages ago, but to my knowledge, the FDA has granted ``approval'' for only one Lyme test ever, and it didn't turn out to be a whole lot better than the standard ELISA test. Will they stick their neck out and approve another test? I doubt it, at least not in the near future.
Things are changing at Bowen. We all have questions about the new directions they are taking, and hopefully we won't have to wait too long before we hear some news.
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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I have been told that this test should be available late next month as I was calling to find out about getting a test.
FLOW CYTOMETERS Modern flow cytometers are able to analyse several thousand particles every second, in "real time", and can actively separate and isolate particles having specified properties. A flow cytometer is similar to a microscope, except that instead of producing an image of the cell, flow cytometry offers "high-throughput" (for a large number of cells) automated quantification of set parameters. To analyze solid tissues single-cell suspension must first be prepared.
Exciting that this testing may be able to decipher Borrelia in all its pleomorphic states
-----
[ 15. December 2006, 01:22 AM: Message edited by: MarsyNY ]
Posts: 465 | From New York, NY | Registered: Aug 2005
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lpkayak
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hmmm. my opinion is we all have to be very careful and run everything regarding lyme treatment by an llmd.
i am more and more concerned as time goes by about some-not all- but some docs, labs, and other providers -esp alternative stuff who are out there to make a buck on us.
this is beginning to include some affiliated with ilads which is really scaring me.
if you google lyme instead of going to the sites most of us know about you get some really bad info.
BUT...i would not encourage anyone to consider legal action against someone who has/had lyme and seems to be trying to help us.
we are still in lyme treatment kindergarten. we are still trying to figure this thing out. lets save "legal action" for those telling us lyme doesn't exist. if we start to attack ourselves...what will happen to the llmds who put themselves out on a limb for us everyday?
now-please read my first paragraph again...that's what's important.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Truthfinder
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I believe you are mistaken about some things, Nimz.
Regarding your Item (1), if you patent something, you have to show considerable evidence that your idea or device will do what you say it will. According to patent law, an invention must be "novel, nonobvious, and have utility." Utility says that "an invention must perform some function, be operable, and must be beneficial to society".
As to your Item (2), apparently the FDA does, in fact, approve tests - or at least they used to. I originally read the following paragraph on the National Institute of Allergy and Infectious Diseases (NIAID) website (not sure if this link still works). These are the words of the NIAID - not mine : http://www.niaid.nih.gov
June 18, 2001 NIAID Collaboration Yields New Test for Lyme Disease
A new test developed with funding from the National Institute of Allergy and Infectious Diseases (NIAID) has been shown to be highly accurate and sensitive for detecting antibodies to Lyme disease. Produced by Immunetics, Inc. of Cambridge, Massachusetts, the new assay recently won approval from the Food and Drug Administration (FDA) for use as a diagnostic test for Lyme disease.
Then if you look in the 2nd paragraph on this current Immunetics page, they make the same claim about the test being approved by the FDA: http://www.immunetics.com/c6/immunetics.htm
As to Bowen not using a ``control group'', I'm not sure what you mean exactly, so can't comment.
As to taking legal action, Bowen has made it clear on their website and in the literature they send with the test kits that this is not a diagnostic test for Lyme Disease, that it is for research purposes only, etc. So, why would I sure them? It is my responsibility to know what I'm getting into. And I still think the Q-RIBb is probably the best Lyme test out there.
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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klutzo
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Tracy, Sorry for any mistakes in my post.....I am now losing my long term memory too. The short term memory went many years ago.
I did pay $250 for the test both times though, since I had the coinfection tests for Erlichia and Babs done as well.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Truthfinder
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Hi, Klutzo - I missed your post earlier - I knew what you meant. I just wanted to clarify the donation amounts.
But, but.... Nimz!
(1) I understand what you are saying about some patents. However, the idea that a medical test has to have the blessings of peer-reviewed journals in order for it to be considered valid doesn't hold any weight with me these days. The scientific community is a ``good old boy network'', and if you aren't part of it, you will never get published there, no mater what you have discovered.
In the case of the Q-RIBb test, it HAS passed ``scientific scrutiny'' to some degree already, since the results have been verified independently by two different methods, and attempts have been made to disprove the test but they have failed.
So far, the only thing I can see wrong with the Q-RIBb test is that it is ``politically snakebit''. However, if I found out that the Q-RIBb was, in fact, detecting other strains of Lyme-causing Borrelia, this would not surprise me, nor would it necessarily disappoint me. Same goes for Igenex.
(2) Well, you saw for yourself the wording used by the NIAID, and the wording used on the Immunetics website - ``the new assay recently won approval from the Food and Drug Administration (FDA)''. It doesn't say anything in either place about a ``kit'' - it talks about the test itself. Can you explain this?
Maybe Bowen became aware that the FDA had approved the Immunetics test, and figured they might as well apply for approval, too? And I know they did apply for approval for the Q-RIBb - it used to be on their website.
This is most curious indeed.
In a previous post, you mentioned that Bowen didn't do a study that included a control group. Are you referring to a group that didn't have Lyme disease? And what would the criteria be for determining who did and did not have Lyme?
Regarding the Bowen test, could you clarify what you mean by ``false advertisement by the company based on their claims lacking substantial evidence''? I don't know what claims you refer to.
So, then, using this logic, anyone getting a false-positive test from ANY lab should sue them if they were harmed by the results of the test?
And what if you got a false-negative from Quest and never got treatment for Lyme even though you later found out you had it - should you sue them, too?
I'm trying to follow the logic here. But I'm having some difficulty.
I think Ipkayak is right - ``we are still in lyme treatment kindergarten. we are still trying to figure this thing out. lets save "legal action" for those telling us lyme doesn't exist.''
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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Hello, I'm sorry but I don't understand the problem. What can be more definitive than finding the actual bacteria in a sample of blood.
Comparing that to antibody tests is really comparing apples to oranges. Same disease but different ways to detect it.
Antibody tests can be inaccurate for a variety of reasons. The only reason for a false finding of bacteria in a sample of blood would be sloppy testing which I really don't think Bowen is doing.
Companies change their way of doing things, move, change websites etc etc for a lot of business reasons. That in itself is not a reason to think badly of them. JMHO
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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UUmmmm. Well, I don't know the technicalities but I know I had a picture of the bacteria (cell wall deficient, I believe) in my blood sample. They counted what they saw and gave me a ratio. Still better than an antibody test that can be skewed by a lot of different factors including the immune system being fooled into thinking the bacteria isn't there.
I also had a Western Blot with some positive bands. Kind of proved my Bowen test was right on. Still don't understand what the big beef is.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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posted
And???? It allows the borellia to light up under a darklight. I think that is very definitive. If the antibody is doesn't work the test wouldn't work. Still don't understand the problem.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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posted
Thankyou for clarifying. I will have to look into that.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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david1097
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I would like to all my considerable ignorance to this discussion.
Lets look at the history of Bowen, First in Ilads, then out, targeted by the CDC but no response (unlike Igenex), now the website is changed.
Here's my take on it:
Like many researches I truly believe that they though they had the answer to testing. Despite the glowing reviews, many, including my self where very skeptical about what they where doing. The babesia thing with a scaning optical microscope made sense. It simply eliminated the hours of sitting in front of a micrscope.BUT....
On the other hand the lyme test for pleomprphic forms was somewhat questionable as they provided little to no information on thier "highly purified" antibody from rabits. (which is the classical way to make crude antibodies). The problem with this is what is the antibody anti to? How many things does it attach its self to? Eveything that it sticks to will be tageed, in this case that means it is tagged as Lyme, even if it is lyme or not.
In addition, the details of the test or antibodies were never made public , some saying this being due to claims of a patents being in process. (The micro second you file for patent you are protected under patent law, so this reason for not disclosing critical information is not valid) thus adding to the mystery.
I have no doubt what so ever that the people involved thought they where on to something and I have not doubt that they wanted to help who they could (with the result being running a research program involving testing).
The problem is that unless someone else can duplicate the results it is not scientifically validated. Its like the accountants at enron saying that all the books are in order because they verified it. Maybe they belive it but it is by no means certain.
All this being said, I thing the bigger problem is that Bowen has been miss used. Many people have posted here that they have Lyme based on the bowen test ALONE, yet other tests show nil reactivity to Lyme. This to me this is indicative of someone desperately searching for a diagnosis and having found a vehicle to provide one, running with it. THIS IS WRONG.
There are MANY bacterial and viral diseases that can infect humans on an infrequent basis and many of those will respond to anti biotics, Unfortuenately many will not.
To me rather than trying to find a label for a disease is secondary, the most important issue is to see what treatment actually does something. Forcing the issue using a test that has a high likely hood of showing a false positive is not the way to deal with it and more importantly IS AT THE ROOT OF THE LYME DEBATE.
I don't think there are any Dr's anywhere that would object to treating a bacterial infection of unkown type with antibiotics, for as long as is needed to irradicate the progression....There a significant number of bacterial infections in this category , a couple, leporosy and TB immediately come to mind (both occur in the US)
If you replace the words unknown type with lyme and all sorts of alarm bells go off and this entire thing changes.
So in summary, I think it is a bit strong to say to take legal action, only due to the point that the testing was done with full disclosure and the patient determined the course of treatment knowing the test was simply an investigation. Still I really do not and did not believe that bowen had the magic answer to Lyme testing. They may have belived that they did and maybe they were or are on to something but the evidence is far from conclusive.
To put things into perpsective, the NIH rocky moutain lab developoed a technique to detect blebs using silver staining and electron microscopy. Blebs were found to be in every body fluid during active infection. This included tears. Depite this seeminly astounding and conclusive finding, the technique was never industrialized, which I am sure it could have been. To this day I do not know why. Perhaps it did not stand up to the rigours of third party duplication. In any case, if it was inaccurate then I am glad that it has never been offered as a diagnostic tool.
I forgot what else I was going to say... , and perhaps it is better that i did not say t anyway as I am sure that there are some that will be upset enought with what I have already written. Still it is my opion and since the question was raised I am offering it.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Antibody developed by Kiregaard and Perry Lab, not by Bowen
As stated in the patent description Bowen RTI use a commercially available FITC-labelled anti-Borrelia burgdorferi antibody from Kirkegaard & Perry Lab.:
Product Description
Affinity purified polyclonal antibody to Borrelia burgdorferi made in Goat and labeled with fluorescein isothiocyanate (FITC). Isolated from a serum pool of goats immunized with heat killed whole cells of Borrelia burgdorferi. The antibody is highly specific for Borrelia burgdorferi. Cross reactivity to Borrelia hermsii, Borrelia coriaceae, and Borrelia anserine has been minimized through extensive affinity adsorption. Product is in lyophilized form. Each lot is tested to assure specificity and lot-to-lot consistency using KPL's in-house ELISA assay.
Posts: 465 | From New York, NY | Registered: Aug 2005
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david1097
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where did you find the antibody info. I was going by memory from a few years back from info on their website?
Posts: 1184 | From north america | Registered: Feb 2003
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david1097
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Wait a minute here.... It looks like it gets worse. The antibody they where using was derived from use of heat killed bateria. This means the bacteria was fragmented , NOT IN PLEOMORPHIC FORM as many have clained or at least unstd to be the case. To detect plemomorphic form you would need an antibody that would attach to that form, not to fragments of the spiral form. If in fact the pleomorphic form was being deteced that would mean that you would normally produce an antibody to that form, yet it was clained that the regular tests did not see it becuase you produced no antibodies to it...
This appears to be a highy misguided effort...
So the answer to what every happened to Bowen? ----It turned out that it was an inaccurate test with a bias towards false positive results would summ it up.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Oh yeah.........this was the first test I was given to show that I have lyme.
If it is inaccurate, does it mean I could have MS or ALS as my symptoms mimic all three?
I did have a spect scan done after the diagnosis that said my results were indicative of lyme disease in my brain.
Do I even trust this? Posts: 867 | From PA | Registered: Jan 2006
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Truthfinder
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Either you have Bb in your blood or you don't.
That's the only question here worth answering.
What the CDC told Bowen is that Bowen needed to dilute their antibody more so that Bowen wouldn't get so many positive tests!!! The CDC wants ALL Lyme tests to show some negatives. And we all know why. Suppress the truth about how prevalent Lyme really is.
If you want to accuse Bowen or Dr. Whitaker of something, accuse them of trying to be too thorough with the Q-RIBb test. Some people simply don't have very many CWD forms of Bb floating around in their blood. If Bowen diluted the antibody per normal standards, there might be people out there with Lyme who would get a negative Q-RIBb test. Dr.Whitaker did not want people to go through years of mis-diagnosis like she did. Haven't we all seen enough of that?
If you dilute the antibody enough, you won't get ANY positives. If you don't have any Bb in your blood, then it shouldn't matter HOW MUCH antibody you use.
Regarding the ``discredited Mattman culture medium'', I don't buy that either. Guess who supposedly ``discredited'' this medium? Yep, the NIAID. And if you read the study, they NIAID couldn't even culture Bb from blood using their own, preferred Bb culture medium!! Bottom line: the NIAID can't culture Bb from blood, period.
Culturing Bb from blood is very tricky. And according to Lyda Mattman, if you make one, tiny little mistake, the culture will fail. So what the NIAID has proven is that they aren't even smart enough to culture Bb in a medium known to work in another lab. Read it yourself. Study of MPM vs. BSK: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87571
And for the sake of argument, let's say that there really is something wrong with the medium used by Lida Mattman, and let's say that Bowen's methods of using the antibody are suspect.
Well, what about the verification of the Bowen test results by electron microscopy? I couldn't help but notice that the CDC didn't even mention that. I mean, that's how test and control groups are normally established - confirmation that they DO or DO NOT have Bb by direct examination of the blood. You can look that up yourself. I'm tired.
And if the NIAID or the CDC really wanted to disprove the Q-RIBb test, they could easily use electron microscopy to do it. They have the money and the resources. But they haven't done it. You have to ask yourself why they have to resort to goofy accusations about culture medium and improper use of antibody material.
Oh, and another thing: Anti-body tests for Lyme-causing Borrelia are always going to be of limited value. At any given time, over 30% of people with Lyme will not be making antibodies to it. Look at some of the studies in Europe on some of the other strains. One of the notable characteristics of some strains is that there is a distinct lack of antibody response. And I think it was Dr. C in MO that talked about the percentage of people who just don't make antibdodies, for whatever reason.
We've got to use our heads here and acknowledge what is happening politically.
Until I see a trustworthy, independent study that disproves the Q-RIBb test, I'm a supporter.
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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david1097
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House,
I think the question that you should be asking is not if you can trust the test results, you should ask is the resutant treatment helping.
There are many unknown things that can be helped by antibiotic treatment. Similalry there are lots of protozoa infections that can be helped by anti protozoal drugs (flaygl, sulfadrugs, some antibiotics and mepron et.al).
If the anitbiotics have never had any effect or make you worse or at a minumum arrest any further decline, if I where you I would really question if the diagnosis is correct.
To put this into context, there was one lyment member who despite thinking that they had Lyme, ultimately had a rare genetic disease that was treatable. It gets a bit more complicated in the case of brain diseases but still if a particular treatment does not work and the treatment was based on a particular diagnosis I think that anyone would have to question the accuracy of that diagnsis. It only makes sense to do so.
Thankfully in my case I have had had a very good response to antibiotics (unfortunately not a lasting one though) so I am pretty sure that I am on the right track, sadly others with Lyme like symtoms do not share this short terms success.
Posts: 1184 | From north america | Registered: Feb 2003
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klutzo
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That is EXACTLY why I started this thread. How do I know the dx is correct just because I have pictures from Bowen of what is supposed to be L-forms in my blood?
I've had over 3 years of treatment, and I continue to slowly decline. Of course, the fact that my tx was all herbal/nutritional would be cited as the cause of that by the ABX purists here, but I am allergic to the ABX, so I can't help that.
My Neuropsychological evaluation showed severe brain damage, and the doctor says in his opinion, the pattern of the damage shows it's from the car accident with head injury I had, and he believes it is the cause of my sx, and that I should be much worse off than I am, given the amount of damage.
However, I can't ignore all the herxing I've done on tx, even though I don't improve much. I used my DH as a guinea pig for huge doses of my Samento and it did nothing to him, while my herxes are so bad, I can't even get near the normal starting dose, after more than 3 years on the stuff! (Yes, I do detox).
Uninfected people don't herx, and I also had herxes which caused almost constant Lyme rage, which is pretty specific to borrelia, so I could have Lyme in my brain, since it likes injured tissue.
I do wonder though, whether genetic inability to excrete toxins could cause what appears to be herxing, but is really just toxicity from the herbs itself, that would be handled by a normal person.
Without standardization, we really have no idea what is in supplements, both nutritional and herbal, and several studies have proven content to be very different from labelling.
I just don't know what to think anymore, and you all seem to be unsure about it as well. Another example:
My diagnosis before Lyme was FMS, but I also meet all the criteria for a dx of CFS and have the sx to a tee, but the NeuroPsych says CFS creates a very specific pattern of brain damage that is only seen in CFS, and I do not have it. He says this pattern is so specific, he can dx CFS just from looking at the brain testing. So, who is right?
Still
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I love the Bowen lab and their research. The one thing I worry about, is large numbers of the population carry this bug, many do not have symptoms, so am I right in thinking that with many people who test positive, it might not be Lyme causing their symptoms? In my case the Q-RIBb was spot on.
Posts: 263 | From UK | Registered: Mar 2006
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I wouldn't be concerned that you may not have lyme, or that the Bowen test was inaccurate. I think that the only problem here is that your Tx is not enough to kill the lyme, or even stop it's progression.
Is it because you can only use herbs where abx are needed, or is it because you can only take very small doses of herbs. You already know that there are many different opinions about that. I believe that the Bowen test is accurate, and that there is no cause for questioning it.
So it looks like you only have two choices. You can continue inadequte Tx due to herxing, or you can push forward by increasing your dose of Samento each week until you get up to an effective amount. I know that you are afraid to do that because of severe herxing, but sometimes you just have to do what you have to do.
Have you tried IV glutathione for detox? This is usually the main reason why lymies have such a hard time with detoxing. This disease depletes our glutathione reserves terribly. You have to understand that even these will cause you pain in the begining because of the detoxing that you will do. They are not cheap either unless you can find a Dr that will write you a script for them so that you can do them yourself at home. They are affordable that way. I hope that you can find a solution to your Tx dilema.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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I have used the Bowen and was in the group that double blinded with Lida Mattman's culture. I also have numberous "regular" western blots which always seem to come out with at least 3 bands (although they change).
I have been treated with numerous antibiotics on and off for about 5 years and am currently feeling fantastic!
I am off all abx and only doing supplements.
I feel that the state of testing for this disease is problematic at best, but that the Bowen does a good job of identifying "what's there".
I've been lucky and had great results with abx (even though I have had issues of allergic reactions also). I think the Bowen played a role in restoring my health.
Just my 2 cents worth......
Hope this helps!
Smiling spotted Pony
Posts: 72 | From Loudoun county, VA | Registered: Dec 2003
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hi Micul, I have serious heart damage, and higher doses have caused far too many close calls involving the Paramedics. Nutramedix says the dose that works for one person may be far less, or far more than for another, and that everyone should stay one drop below the dose that makes them herx, whatever that dose may be.
I can't afford IV's or the fee for service doctors who supply them. I am just starting to take a sublingual glutathione supp. recommended by a Lymie pal. Thanks for seconding that idea. Happy holidays. - - - - - - - - - - - - -- - - - - - - -- - -
EVERYONE,
BOWEN wrote back to me finally! Tom from Bowen e-mailed me to say they have almost completed the trials on the flow cytometry test, and "expect to have approval by the end of December", whatever that means. I am not sure what kind of approval he is talking about, and he did not explain.
He said once they get approval for the new test, the QRiBb will be discontinued. He says it is a very good test, but this new one is better and gives a more accurate serial dilution.
As always, Bowen does not require ABX prior to testing. He asked me which ABX Igenex requires before testing and since I did not know, I just gave him their 800 # so he can ask them himself.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
MarsNY, Thanks for the info. Now I wish I had waited several years longer to have a test, lol! If I had only known Medicare would eventually pay for the darn thing.....
I paid $500 for two QRiBbs over the course of a year. Now I wonder why I bothered, since herxing on tx and symptom resolution now seem like a cheaper and more accurate ways to "test".
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I guess you will be happy to know that the Bowen Lab in Tarpon Springs will be closing their doors on December 20th. The lab was a non-profit research facility and there test made a huge difference in many lives, including mine and my family. May they rest in peace. SandiB
Posts: 991 | From USA | Registered: Aug 2001
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Klutzo
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, and perhaps it is better that i did not say t anyway as I am sure that there are some that will be upset enought with what I have already written. Still it is my opion and since the question was raised I am offering it.
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