The last straw was to get a q-ribb test from Bowen. I was hopeful it would come back negative so I could conceed and start my psychiatric therapy. The result was a 1:64 serum dilution. The doctor who explained it to me is doubtful of the tests validity. I personally just dont know what to believe any more.
What are your feelings on the accuracy of the q-ribb test from Bowen? Part of me wants to just let it go and get use to life as it is and what it may become. Another part sais fight fight fight.
In the meantime Ive been considering self treatment. I have just ordered some Somento and will give that a whirl. Does anyone have experiance with this Cats Claw stuff? I will be dosing conservatively to begin of course but would still like to hear your oppinion on it.
Have also read alot of stuff on the Rife machines. I cant help to think, if I continue down this road, that I will be giving lots of money to people that prey on the Ill.
Your comments welcome and requested!
Bowen is good enough for me. My sister was having some serious psychiatric problems. Her kids already came back at 1:32, so I figured that it might be worth it to send a test in for her, too.
Hers came back at 1:128. No surprise to those of us who know her and know Lyme.
I suggest that if you suspect Lyme, have a 1:64 titer through Bowen, you've got Lyme.
Treatment is up to you. But while you're thinking about it, clean up your diet, get on some probiotics (yeast plays a role it seems, whether you're on antibiotics or not), and work to build up your immune system. No harm in starting there, right?
Good luck.
Some of the best LLMDs are in your area.
Good luck and check out the newbie links if you are new to this process.
I have read that their philosophy there is literally that everybody are carriers of the bug, so they think that everyone has it. Even if that is not true (that being their philosophy) I have never heard of a test coming back negative.
The test is extremely accurate and has been backed up by over 300 positive samples being cultured by another microbiologist other than the one who invented it.
It is a patented test and is currently seeking FDA approval which will make it the ONLY FDA approved test for lyme out there.
Keep in mind that the CDC website, in very fine print, says lyme is a clinical diagnoses. If you are not seeing a LLMD you could very possibly miss out of your diagnoses.
This test saved my life and my nephew's life. No other tests came back positive and after 3 years of treatment I am almost 100% symptom free. My nephew had been to NIH, Mayo and Shands for his illness but no-one could diagnose him. His mom book him for this test out of desperation and like many, didn't quite know to trust the results but it was her only option.
Her son was down from 185 lbs to 125 lbs. It was her only choice and his symptoms fit. 3 months later he was finally able to eat w/o painful stomach cramps and his appetite returned. He was able to return to college but it was a difficult struggle.
The Bowen is an excellent test that has saved many of our lives here on lymenet. I am not disturbed but the amount of positives as I realize this bacteria has been creeping around the US undetected for at least 40 years. It was doctored up at Lab257 above Lyme, CT and got into the water system most evidenced by the outbreak of severe rheumetoid arthritis in children in Lyme Ct, hence the name.
From there it has continued to spread with no accurate test to detect it and doctors who really don't test anyway. When I look at our history over the last 40 years I see a country that was very healthy in the 50's and by the 70's we started having alot of unexplainable "syndrome's" crop up like Fibromyalgia, chronic fatige etc.
I wish you well in your quest. Trust your instincts.
I trust the Bowen test and feel it tells the "real" story about the lyme pandemic.
Personally, I had been sick, misdiagnosed with fibromyalgia then Lupus for 27 years. Every test I had including the ELISA, Western Blot, Dot-Blot Assay were all negative... with one band on the Western Blot. My Bowen test was highly positive for Lyme and Babesia. After only 18 months on just oral antibiotics, and a low carb, sugar free diet with lots of supplementation, I started to regain my health. It is now four years since I was properly diagnosed with the Bowen Q-RIBb test and treated by a LLMD, Lyme literate doctor. I am symptom free and can't remember ever feeling this well in my life.
The same goes for those I have observed in our support group and others I have talked to around the country. Most had been sick for years running from doctor to doctor, clinic to clinic and were misdiagnosed with everything fibromyalgia, Chronic Fatigue, MS, Lupus etc. and they finally found out what they had with the Bowen. I have stacks of cards, emails and letters sent to me thanking me for sending them to Bowen.
Of course, their are a few, a very few who despite a positive Bowen test, are convinced by a doctor who DOESN'T understand the test, AND IN SOME CASES doesn't even wants to treat Lyme patients, who will convince their patient they don't have Lyme. Very sad, but true. Perhaps in some cases the patient doesn't want to have Lyme disease so they are willing to quit and accept their doctor's word rather than a test that detects the actual antigen Bb in its L-form in the blood. There is no other explanation than the antigen Bb is there when it is seen through the darkfield microscopy, using the fluorescencing staining technique (which has been used for years in detecting pathogens like E-Coli and TB ). You would have to disregard the accuracy of all the test using this technique in the last fifty years as being inaccurate, which you can not.
To understand the test I recommend you go to
Dr. S.'s website and read the explanation. By the way, the test does have a US Patent, and it is in application for FDA approval and
getting its CLIA status again. Bowen will always be a research lab because they are constantly improving tests for Lyme and co-infections. They have recently opened another lab where they plan to do more research, and offer another test for Lyme backing up the Q-RIBb results.
Also, the Bowen lab does have negative test results. Because this is a relatively small but specialized lab doesn't it make sense that they would have a high rate of positive test results? As Billh said , "The last straw was to get a Q-ribb test from Bowen." In those who have gone a few years without treatment for their Lyme, as I did, the test looking for the antibodies will usually be negative or equivocal. That is because the bacteria leaves the blood stream and cloaking itself in the bodies own protein it is able to fool the immune system so antibodies are not produced....therefore the test like the ELISA and Western Blot are in these cases false negative.
Read explanation of the Bowen Q-RIBb test at:
http://www.personalconsult.com/articles/bowenresearch.html
Ivebeentricked...you indeed have ... Bowen had a negative test result last week. Check it out if you must.
Auntibiotic....Your statement about insurance companies do not recognize Bowen test is FALSE. Many companies do reimburse for the test. Of course, other insurance companies especially HMOs don't want to reimburse Lyme patients period, either for testing or treatment. Bowen lab with their reseach status has give some insurance companies a reason to deny reimbursement...that is why Bowen has made application for CLIA approval. If you read the explanation on the test at the website I stated above, you will learn that the lab was CLIA. Bowen had to change status ONLY due to lack of grant funding, with CLIA/Research status more insurance companies will cover reimbursement for the test.
Dr. W. would not give up when funding dried up a few years ago, she put her own money into keeping the lab open because she wanted to help Lyme patients. A $250 donation fee for the test isn't unreasonable. Compare cost of testing at other labs if paid out of pocket. The Bowen lab isn't getting rich. Dr. W. is a true humanitarian, and many are grateful for her test. The lab has only been open for 5 years, and in that time have done over 10,000 test from around the world.
Best,
SandiB
[This message has been edited by SandiB (edited 11 August 2005).]
[This message has been edited by SandiB (edited 11 August 2005).]
You mentioned Rife, I have heard both good and bad about it. Haven't had the occasion to try it myself.
Samento, is a waste of time. If you had Syphilus you wouldn't treat it with herbs.
Don't waste your time and money...get the Bowen test, and find a Lyme literate MD who
knows something about microbiology. Funny, but my psychiatrist was the only MD that got it.
Alex
I stopped seeing him becuase i began having second thoughts of my dx. That and I was fearful that I was destroying my immune system. He didnt take my insurance either. Ive done a lot of armchair doctor research through the web. I think I have a fairely good understanding of the different forms that Lymes takes and I understand that there may never be a cure for those with long term chronic infections. Due to the L form and spirocheet forms borrowing deep within bodily tissues where these organisms may never enter a blood vessle that is carrying antibiotics.
Back to present day; the doctor I went to see in Southern NJ calls his practice 'The Lymes Disease center for South Jersey'. He is a nice man,took my insurance and was willing to help me get the Bowen test done. He was very clear in stating that even if it came back positive he would not be able to treat me since the test was not yet FDA approved.
When it did come back he offered oral abx but his oppinion didnt change. To summarize my feelings about all this there are two things I am looking for:
A possitive dx by a confident doctor and aggressive treatment with IV abx. I cant have/do one without the other. Again, thank you for your replies and insite to all this. If somone happens to know an LLMD in NJ that will aggresively treat based on Bowen please shoot me a message.
Given that and the high degree of positives (means sensitivity is high which is good, suggests specificity is low which is bad), I wouldn't (A) use the test myself, and (B) would put no weight into its meaning.
The existance of a patent means little as to the robustness and utility of a medical test. Clearly, others on this board have different opinions but as a science researcher, I go with data...and (A) Bowen can't/won't answer key "hard" questions and (B) there are no other sources (let alone peer reviewed and published) of sensitivity/specificity/reliability/validity data for the test.
Billh, I can tell you that there isn't a Lyme test presently approved by the FDA for detecting Lyme in humans. The ELISA which is only 35% accurate for blood testing was approved for surveyance purposes. Also, the CDC states that Lyme is a 'clinical diagnosis'. So your physician is misinformed on saying he can't treat you because the Bowen test is not FDA approved? If he is Lyme literate he should be aware of these facts, and more than willing to 'clinically diagnose' you. I can also direct you to a physician who will diagnose you, so you can get treated.
I would suggest that you both order the DVD of the Greater Hartford Conference that took place this past May, 2005 in Hartford, Ct. Scientist Dr. W. and Dr. M. do outstanding presentations on microbiology which include
discussions on the Bowen Q-RIBb test and Cell Wall Deficient Bacteria with concentration on the spirochete that causes tick and other vector borne diseases. The complexities of the Borrelia species are also included. As a researcher, Duramater, you will enjoy learning from two women of science who have spent their entire lives dedicated to research.
Many people are treated with long term antibiotics and do very well, they become symptom free and live normal lives. So Billh, you have to believe it is possible for you also. As I mentioned before diet, exercise and supplementation are as important in the treatment for Lyme as the antibiotics.
The immune system is the best defense against this pathogen, but it has to be knocked down with antibiotics to give the immune system a change to take over.
It can be ordered by going to website: http://www.ctlymedisease.org/
Note 'Order DVD" in right column.
SandiB
I for one have four separate negative results from them, for two tick borne diseases. I was positive for all three, but after treatment I only have one left.
When I was on ABX, the Bb load was going down and I was feeling better. When I went off ABX, the load went up and I felt worse.
So there is a correlation.
Other people tested "-" for Bb as well.
quote:
Originally posted by billh:
Hey there, I started my journey for answers 2 years ago. I was recovering from a bad accident when my general health and energy really started to deterioate. Long story short, I began persuing the possibility of lyme because I do remmeber pulling multiple nymph's off of me and having a rash 15 some odd years ago. Ive had multiple western blots, even one from Igenex. All negative; Igenex IGM band 41 was + but thats no real indicator afaik.The last straw was to get a q-ribb test from Bowen. I was hopeful it would come back negative so I could conceed and start my psychiatric therapy. The result was a 1:64 serum dilution. The doctor who explained it to me is doubtful of the tests validity. I personally just dont know what to believe any more.
What are your feelings on the accuracy of the q-ribb test from Bowen? Part of me wants to just let it go and get use to life as it is and what it may become. Another part sais fight fight fight.
In the meantime Ive been considering self treatment. I have just ordered some Somento and will give that a whirl. Does anyone have experiance with this Cats Claw stuff? I will be dosing conservatively to begin of course but would still like to hear your oppinion on it.
Have also read alot of stuff on the Rife machines. I cant help to think, if I continue down this road, that I will be giving lots of money to people that prey on the Ill.
Your comments welcome and requested!
Alex
Their repsonse to the nearly 100% positive rate (that nearly everyone has Lyme) is a complete joke. They just don't know what they're looking at, that's all.
[This message has been edited by 24bit (edited 13 August 2005).]
Lisa
My point is, dealing with the politics of any large federal body usually takes longer than expected.
I does not mean anyone is deceiving people, it just means if something as simple as getting your green card takes years, then I am sure it's going to take years for something as complex as getting a Lyme test approved by the FDA.
Honestly, I am glad they are taking their time. Too many dangerous drugs, operations and defective tests are pushed too fast on the people, without getting proper research.
That's probably why 700,000 people die a year in America, from medical mistakes.
quote:
Originally posted by 24bit:
Did I ever say there was? Bowen keeps saying they're going to get FDA approval soon which leads people to believe that this test might even be better and more reliable than any other Lyme test out there. So my statement still remains that Bowen told me personally on the phone that they expected FDA approval shortly after I spoke with them almost 3 years ago. It's still the same story, and now I don't believe it at all. They don't answer tough questions, waaaaaaaaay too many positives, questionable process.....it doesn't pass the smell test by a mile. I used to be optimistic about them a long time ago, but I've since seen what's really going on. I'd be more than happy if they can prove me wrong though. I hope they do.
[This message has been edited by Cap (edited 13 August 2005).]
Good luck getting diagnosed with the other tests.
quote:
Originally posted by CapriceMom:
Hi billh,
You've gotten some pretty good answers here and I don't know if my 2 cents will help.You mention three or four concerns that interest me: First, you hoped that your Bowen (Q-RIBb) would come back negative so you could get on with psychiatric treatment.
Next,your "Lymes" doctor wouldn't treat you for Lyme Disease based on the positive Bowen.
Finally, a concern for your immune system combined with the idea that you would be giving your money to lots of people and not getting well.
I want to address those issues:
First - I was being treated for various mood disorders for years. Nothing added up, medications didn't work the way the doctors expected. I continued to get sicker and weaker and finally had to end my career. I had asked to be test for Lyme Disease in the mid-eighties. Was told there was no Lyme disease in my state.Talk about giving my money to lots of people and not getting well. I went to all sorts of alternative healthcare professionals. In fairness to them, I suspect that their care and my adherence to a healthy diet and lifestyle (when I did) is the only thing that kept this little Lyme sucker at bay.
Finally I went to an acupuncturist who happened to have an MD from a university in China and a PhD from Oxford in Biochemistry, along with a whole string of additional certifications.
She recognized that I had a well established infection and recommended that I go to a local doctor and request the Bowen test. The doctor wouldn't even pull the test but a local nurse practioner did. It came back positive. At a lower serial dilution level than yours.
By the way, I have learned that the serial dilution level is less important than we might think. A long established infection often is established in the soft tissue of the body and the spirochetes don't enjoy swimming in blood they like to burrow in the soft tissue. But that is beside the point.
(Lyme Brain)Based on the Bowen and a Clinical Diagnosis by a LLMD, I have been treated for two years with antibiotics, I have seen a LLMD and been treated locally by someone who just continued the treatment recommendations and is learning as she goes about Lyme. I have a ways to go but I will tell you that on combinations of low level antibiotics I am improving. Everyone is different.
I am now seeing another LLMD. Both LLMD I have seen are out of state. Sometimes you just have to do what you have to do to get started.
Some people do need IV therapy but I have not experienced any mood disorders since I started treatment until recently.
I recognized that my system was extremely toxic and forced myself to do some research and learn about some cleansing diets and programs.
Get colonic irrigations to clean out my system. Since then I am seeing remarkable improvement.
If you are seeing a real LLMD he or she will know that you don't even need a positive blood test of any kind. Because of the unreliability of some blood tests and the controversy surrounding others (I will leave my opinion out about Lyme professionals eating their young) the CDC long ago said that a Clinical Diagnosis was sufficient to treat Lyme.
Immune System - I was very opposed to taking antibiotics. I hadn't taken antibiotics since I was a kid. So I can relate to this concern.
After reading and coming to terms with this Lyme thing I came to another conclusion. If I have been exposed to Lyme and am now sick, my immune system is already shot. Tests on natural killer cells confirmed this, no immune system.
So I take the antibiotics, supplement heavily with probiotics. Have gone back to working with Macrobiotic principles, have learned a little about food combining, checked out "The pH Miracle" a book about keeping your body alkalized. I drink lots of "Barley Life" www.theaimscompanies.com and chlorophyll.
I eat lots of greens. In other words, I don't fool around. I take the drugs because they are helping me fight this disease, but I also know that they are powerful and acidifying.
So I eat clean, healthy, organic, fresh, in season, no processed foods.
I see alternative healthcare people and pay out of pocket when I need to but gradually am relearning how to keep myself healthy.
I'm getting better, it is a struggle. But I expect to continue improving.Two years ago I had days I couldn't walk. I could read a book (I was an English major. Back in the world, I used to write manuals, speeches, reports, etc.). I could barely carry on a conversation, I couldn't say the words my brain was thinking, I couldn't think of words, simple words. By the end of a sentence I wouldn't remember what I had started to say. This happens to everyone on occasion, this was all the time.
I could see the same movie two weeks in a row and not remember seeing it the first time.
As you can see, I am getting my brain back. You may not agree or like what I am saying but I am amazed I can even think this through.
I see a great many Lyme patients who want to just take antibiotics or cat's claw (tried it, didn't help me) or samento (tried it, didn't help) but they want to drink soda's, eat sugar and processed foods, caffiene, etc. and they don't understand why they don't get well. I'm not saying that is what you are doing. You haven't said what your whole program is.
What I am saying is that we all have to be our own physicians. It is not our fault we are sick. But doctors are basically like mechanics these days. They only know how to give us the drug to kill the bacteria. They can test our blood and tell us what bacteria we are battling. But we must keep our body strong so that neither the bacteria nor the drugs make us sicker.
Stay strong and don't give up. If you have Lyme, no psychotropic drug in the world will help you. And if Lyme has hit your brain, don't fool around. Take the antibiotics your doctor gives you and then treat your body well.
That's just my opinion. I could be wrong.
Hope you feel better soon.
quote:
Originally posted by ivebeentricked:
Everyones who gets tested through Bowen comes back positive. I am not saying you don;t have lyme, I just don't think you have it because Bowen says you do.I have read that their philosophy there is literally that everybody are carriers of the bug, so they think that everyone has it. Even if that is not true (that being their philosophy) I have never heard of a test coming back negative.
This is where you need to do your own homework and find your own comfort level. Obviously some here have not found that comfort level but I have found most people who get the right information really appreciate the Bowen Lab.
They're test is frequently mis-read as negative by doctor's ordering it for the first time because they see neg. on the babesea and Ehrlichia which will soon be seperated from the Lyme test in the future. They soon will be seperating out the Babesia and Erhlichia from the Lyme in the future to help avoid this
Considering articles such as "Lyme Disease The Unknown EPIDEMIC" and "The Plague of Ignorance of the PLAGUE" which likens this to the Black Plague, maybe we need to wake up and credit Bowen for detecting a true plague. I don't want my head in the sand when instead of "I see dead people, only they don't know they're dead" I see LYME people, only they don't know they have Lyme!
After 3 years of talking to customers from behind my stylists chair, it is rewarding to see some of the dripping of information come around. This week two really tough nuts to crack on this topic came to me w/questions about lyme. Our groundroots efforts are working.
The most convincing evidence for the one person was her patient (pshychology) who was + on the Elisa (1 in 200 are positive). He had all but two sx and should have been clinically diagnosed. Instead, his doc ordered a WB to back it up. When that came back neg. he said "you don't have lyme". The guy is on disability and has MS and Parkinsons like sx! His massage thereapist recommends a Bowen test. This is test # 3. His psychologist tells me it was neg., at this point I only know the psychologist. The Doctor misread the Bowen. FINALLY he gets a diagnoses and calls me at home to thank me. How many times does a person have to slip thru the cracks before they can get help???
I think it's safe to say he is grateful to the Bowen.
[This message has been edited by Curley911 (edited 19 August 2005).]
Thank you for the complete treatment of the subject. Your story sounds very similar to min. I could have written it. Sorry you don't have your email posted. I would have liked to coommunicate with you.
I am 6 months into tx. Ilene