igenex results are here

Hi all
Just rung the Dr surgery who ordered my bloods for igenex and my results are in!!!!
I can't get them though until tomorrow as the Dr is not there.
I am really nervous now, and have asked for a copy to be emailed to me also for my own records.
I know I am jumping the gun  a bit but if they are negative what do I do then??????
Get a repeat, they cost me $1600.
I still have to get my daughter done yet, but was waiting to see what my results come back as.
My cd57 test here in Australia come back at 39, and my G.P. said that was chronic and that he expected the igenex one to come back even lower.
Is this test very reliable at igenex????  Is this a test solely for lyme, or is it just a test that could mean someone has lyme?????
Thanks for all your help so far!!!
Melissa

[carrie235]

Hi Melissa,

Did you get your results yet?  Post and let us know when you get them!  Hopefully, it will give you the answers you've been looking for.

Carrie

[JackieCalifornia]

Yes, the Igenex tests are considered by Lyme specialists to be the best diagnostic tests available for Lyme, as far as I am aware.  That your doc tested you by CD57 is also a good sign.

Let us know what you hear back, and in the meantime, hold fast.  Best to you and yours --

[ree427]

I have also heard Igenex to be one of the best tests, however mine was a false negative so it's not 100%. I believe no test is 100%.  My doctor also uses a test by Immunosciences Lab and Fry Laboratories which showed positive results for me.

[navyguitar]

I don't think there are many cases of lyme disease in Australia. I didn't do much research, but I do not think they have found a vector tick that can transmit the disease in your area. I am skeptical of the high rate of positive test results igenex gives out. I was reading on another site that the percentage of positive tests is around 53 percent. That is way too high. Another member mentioned that they had friends with no symptoms test positive with Igenex. I actually wanted to have my gf do a test with igenex to see if she would come back positive. I actually mentioned that it would be interesting for a news agency to send blood samples from Australia to Igenex to test their accuracy.

There was another company called Bowen Research that a lot of people considered a top lab. Why? Because they were giving out a high percentage of positive tests results. People thought they were the best lab because they found a disease that Labcorp and Quest could not. That is the problem. All a lab has to do to be considered the best is give out positive test results. If they gave out as many negatives as Labcorp and Quest, they would be out of business. They need a competitive advantage. Bowen research had law suits filed against them and ultimately changed their name or closed.

There are some really good LLMD's that will help you. There also seems to be some bad ones. I was reading about an LLMD who was sued over over-diagnosing and over-prescribing antibiotics. The doctor drew 40 vials of blood and diagnosed the senior citizen lade with 20 something diseases. This was without physically examining the lady. Some of the diagnoses could not have been made without a physical exam.

Unfortunately, there are no definitive tests for lyme disease. A lot of people with undiagnosed issues end up believing they have lyme. One of the reasons I think this happens is because there are actual blood tests for lyme and it is medically recognized by mainstream MD's. These tests are not accurate. Lyme can mimic almost all diseases (information obtained from forums). You could do two tests with Igenex. If one came back positive and one negative, people would still support their findings. You would be told that the Lyme was hiding during the negative test or that lyme can change bands. It is extremely unlikely that you have Lyme Disease, if you are from Australia and haven't traveled to a location with a high prevalence of lyme disease. Please make sure you keep an open mind and keep searching for a diagnosis. Do not just settle on the notion that you have lyme. Lyme disease needs to be clinically diagnosed.

[Melissa072]

Rung the Dr and yes he said I have lyme, but one bib of paper did not get faxed clear, so he will ring me in the morning, after he has had a good look.
But what he did have, he said yes I do have lyme..

[JackieCalifornia]

Sorry, but I have to disagree with you.

You say:  "It is extremely unlikely that you have Lyme Disease, if you are from Australia and haven't traveled to a location with a high prevalence of lyme disease."  and "All a lab has to do to be considered the best is give out positive test results."

Let me turn this around on you.  By your standards, all a lab has to do to be considered the best is to give out NEGATIVE test results for Lyme.  If you prejudge the accuracy of a test by whether it fulfills your expectations, however, you are not following the scientific method of basing conclusions on evidence, and are instead cherry-picking the results to support your pre-conceived notion of what is 'correct'.

You assume that Lyme is rare in Australia, and therefore any test that shows a higher prevalence than 'rare' must be a phony test.  That's putting the cart before the horse.

You are in good company in a fashion, however:  there are lots of educated and experienced MDs and PhDs who think as you do, and they run the CDC and Infectious Disease Society of America.  Unfortunately, cooking the test results to match your predetermined conclusions is not accurate and not helpful.

The scientific approach is:  data first, then conclusion.  The other way around leads to folly and a lot of suffering people, as we have now.

[JackieCalifornia]

I'm glad your doc called you.  He sounds like a caring person not to wait and let you twist in the wind, waiting and worrying.

I'm sorry to hear of your diagnosis, but it is the first step toward getting well.

Best wishes, and let us know how you do, okay?

[Melissa072]

Will do
Thanks again

[carrie235]

To Navy:

Regarding your comments on Igenex, I was just thinking the other day that I have been reading about a lot of people that are testing negative at Igenex....so it's not true that everyone tests positive.....

[JackieCalifornia]

And just a further note on Igenex tests:  they are different in structure from the Western blot/ELISA tests used by most docs.

Western blot/ELISA, to my understanding, look in your blood for antibodies your immune system makes against the Lyme bacteria.  A while after infection with Lyme, your immune system gives up fighting, partly because the Lyme bacteria go into hiding in your body in slimy shields they make for themselves, called biofilms.  The immune system can't see through the biofilm, and so assumes the bugs are all dead and gone.  Therefore:  negative test result.

The Igenex test instead looks in your blood for bits and pieces of the actual Lyme bacteria/DNA, that is, direct evidence of the infection.  It's a whole different approach.

A Lyme doc will sometimes give a short course of antibiotics to stir up the Lyme bacteria in your body, which will sometimes then give a positive result where it didn't before.  That's why the tests are NOT the last word in diagnosis of Lyme.

[JackieCalifornia]

If 53% of the people tested for Disease X actually have Disease X, and if the tests for Disease X come back showing 53% of those people tested are positive, how can you say that 53% is 'too high'?  Diagnosis of Lyme is clinical, based on history and symptoms, and aided by testing.  Testing is not perfect.  Your conclusion is unsupported by logic.

It's clear you think Lyme is overdiagnosed; others of us have concluded that it is underdiagnosed.  You are entitled to your opinion, and we to ours.  My objection is to people like you who try to keep people like me from being treated.  If you don't want treatment, don't take it, but don't tell me what to do.  

You have assumed that ELISA/W. blot tests are always correct and therefore the higher positive rate on IGeneX tests must ipso facto be incorrect.  You have based your conclusion on a faulty premise, therefore your conclusion is invalid.  You are entitled to your opinion, but I hope you will rethink your position, because it is that kind of thinking that has left many people very ill with Lyme and its co-infections to wander the world without treatment.  That is inhumane and wrong.  If you don't want treatment for your illness, that's fine, but kindly don't tell the rest of us to lump it because you say so.

Yes, ELISA and W. blot are different tests:  they are paired because one of them has a high rate of false positives and the other a high rate of false negatives.  What is your point?

Your statements like "the percentage of positive results were too high" on IgeneX tests.  That would be true only if the ELISA/W. blot tests were infallible and therefore the gold standard.  They are not.  Therefore 'too high' is a phrase without meaning.

You are entitled to believe that patients diagnosed by PCR and upon clinical exam and history should not take "aggressive measures" against their ailment, but please don't tell other people they are not entitled to make their own decisions.  You may have concluded that 'aggressive measures ... have not been proven to be beneficial', but you would be wrong.  I am living proof, as are others here.

I suspect you mean well, but your arguments are faulty.

[carrie235]

Navy:

Please keep in mind that only people that are ill with symptoms of lyme disease are going to go to Igenex for testing.  Healthy people who have no reason to suspect lyme disease would go to Igenex for testing...why would they....  It is far too expensive for anyone at random just to order the test and be tested for the heck of it.  

I am actually surprised that only 53% do come positive to be honest!  

[JackieCalifornia]

Good point, Carrie!  I sure never heard of IGeneX before I ended up sick and my regular docs were clueless.

[ally123582]

Do you have a Lyme disease diagnosis? Did you use IgeneX?  I didn't see that mentioned in your posts and was just curious.  

[Melissa072]

Thanks everyone for your comments
I have spoken to my Dr again today and he still hasn't received the one bit of paper, but will get onto igenex again today.
He also said again, that I do have lyme, and he is going to get onto a collegue near me to treat me via himself.
This Dr has gone out of his way to help me, and he does have proof that lyme does exist here, he has a website and they have taken samples off ticks in certain parts of australia that do contain lyme.
One area in particular is where I used to holiday all  the time as a child....
Will let you all know how I get on Monday.
Thanks for all your help again!!!!
Much appreciated

[navyguitar]

Again, your post is extremely confusing. Please go back and read my posts. You are making false accusations in regards to my intentions. My point is to NOT exclude other health related issues. What if the OP has another health issue and is a false positive? What if she has Celiac disease? She would go without treatment for years. Moreover, she would be subjected to long term antibiotics that would have no benefit.

Your logic is the one that needs to be called into question. Fifty three percent is too high because no other disease in the world tests that high. It would be highly unlikely to have that many positives. Look at old posts when Bowen research was considered the best. They were considered the best because of THEIR HIGH PERCENTAGE OF POSITIVE TEST RESULTS. When the were sued for giving false positives, they closed or changed their name. I would have thought that the Lyme community would have been outraged. This did not happen. Like I said before, a lot of people with Lyme want to have it for some reason. It is an answer to their chronic symptoms. If Igenex is found to have unreliable tests, there will always be people like you saying it is a conspiracy. That there is no way they were profiting off of sick people.

I think the high number of positives can be attributed to a few different things. First, Igenex tests for more bands. This greatly increases the chance of a positive just based on numbers. People count the number of bands that come back positive. On top of that, LLMD's tend to diagnose Lyme with less bands. This combined with more bands greatly increases the probability of a positive diagnosis.

I noticed you did not answer any of my questions. How are people getting Lyme disease in Australia? What is the vector? That is my point. The probability of a person from Australia contracting Lyme is very small, if it is even possible. She would probably make news as one of the first people in Australia to have it. If she found a vector tick carrying the bacteria, it would make news in Australia. That is how unlikely it is that she has Lyme. I'm going to repeat my point again. The OP should not dismiss potential health issues that could be causing her symptoms. I NEVER said she should not pursue treatment for Lyme. I just feel like it is highly unlikely she has it. Therefore, she should keep an open mind to other diseases.

[navyguitar]

That is the typical rebuttal for Igenex. There are a lot of people that are convinced they have HIV, hepatitis, celiac, STD's, etc. The number of positive results comes no where close to 53 percent. Fifty three percent is ridiculously high. Go to other forums on this board, and you will see many posts where people are convinced of a disease.

[navyguitar]

I forgot to mention that a person with Lyme sent a couple of friends blood samples to Igenex. The friends were completely healthy. Guess what??? They both came back positive. This was discussed on another board.

[navyguitar]

No, I did not test through Igenex. I have been doing a lot of research, and I feel that they are not reliable. I did, however, test negative through Quest Diagnostics. The OP actually made me make up my mind not to use Igenex. Please do research on Lyme disease and its prevalence in Australia. It does not exist. The fact that she tested positive is disturbing. I actually mentioned on another board that it would be interesting if Dateline submitted blood from Australian residents to Igenex or another area where Lyme doesn't exist. You can read other posts where members tell people from Australia to get tested for Lyme, and the person tells them that Lyme does not exist in Australia. They then keep searching for what is wrong with them. The OP may very well have Lyme. My point is that she should keep an open mind due to the low probability of contracting Lyme in her area.

[ewford]

  Lyme does exist in Australia.  It is not just a "tick" it is sexually transmittable as well.  Mycoplasma Fermentans-Incognitus is often an overlooked co-indfection in morbidity along with bartonella, Babesia, Brucella, Rickesettia, Ehrlichia, etc.

[ewford]

LOL, Quest.......LOL, Labcorp....they only test for 1 type of Borrelia, where over 200 are known to exist.  They also only look for antibodies, which as we all know are suppressed by the immune system.  This is a chronic INTRACELLULAR bacterial infection that cloaks itself from being picked up by the immune system.  Dr Lida Mattman, PHD Yale, Nobel Prize nominee, Immunologist, Virologist  verified over and over again.  The goverment has tried to shut down labs that use the Bowen Q Ribb test criteria over and over, but in double blind controlled tests, it has never failed. NEVER.  Hence, they can't be shut down.

  As far as your logic is concerned, if I was a one legged man going to an *** kicking convention, I would expect to see alot of one legged men going there.  The tests results are so high because these individuals have been everywhere else taking a test that shows nothing, because the criteria is WRONG.  Take a test that looks for the proper DNA genetic sequence, and it will show pos in people that are ill with this. Think Mycoplasma chronic infection

YOU need to go to the STD, Autoimmune, MS, Lupus, CFS forums and see ALL the people that are being missdiagnosed with all their tests being neg or borderline with ALL the classic Lyme symptoms.   I am beginning to think your name should be Gary Wormser as opposed to Navy Guitar.

[navyguitar]

Unfortunately, you are a believer of anecdotal evidence. There is always a rebuttal to why someone has Lyme. Now, it is transmittable as an STD. Where is this data in the US? I need data from reputable doctors that do not have an interest in Lyme. A lot of people, including yourself, think Lyme is some huge conspiracy. The government is trying to infect people with Lyme, etc. If you told this to any normal rational/logical person, they would laugh in your face. Why did Bowen Research close/ change their name?  Labs like Igenex and LLMD's have a huge incentive to spread the word that Lyme is an epidemic. Igenex will be out of business when a definitive test is created. Unfortunately, people like you will still not believe in this test. You will make comments like the Lyme is hiding somewhere in the body. That the Lyme bacteria know when you are being tested, so they will not be in the arms. It will never end.

Igenex doesn't just check for Lyme out of the kindness of their hearts. They are making huge profits. Why do you think they do not accept insurance. They charge people a cash rate. Have you ever looked at an insurance bill? I was tested for Celiacs. The lab wanted $280 for this test, but the insurance company only paid them around $50. They are still able to make a profit from the insurance companies reduced rates. Igenex charges the full amount on a cash basis. They do not have to file insurance claims. It works the same for doctors. They only get paid a fraction of what they bill for. An LLMD will get the full amount. This leaves a huge incentive for unethical people to take advantage of sick people.

I'm not saying that Igenex or LLMD's are all bad. I'm just stating that there is a huge incentive for these individuals to over diagnose Lyme. They are not doing their services for free, nor are they doing them out of the kindness of their hearts. They are making a lot of money from Lyme patients. That is why I say to keep an open mind. That is my only contention. Before you spend your families life savings on Lyme treatment, you should exhaust all other causes of your illness.

[ree427]

It doesn't make much sense that some LLMDs are in it to profit off of sick people when they risk the chance of losing their license for treating people. It would seem silly to me.  I think LLMDs have to be heroic to put their license on the line to treat this disease.  I highly doubt the main reason they practice Lyme is for the profit.  I know my LLMD screens people extremely carefully before treating patients. I know three LLMDs that got in to treating the disease because they have Lyme or one of their family members have it, not for the profit.  I just felt I needed to point this out.  Thank God for LLMDs!!

[carrie235]

Navy:

Why would healthy people be tested at Igenex and spend that kind of money?

I personally believe that many people are infected with lyme and just do not know it.  I for example was bitten by a tick when I was around 13.  My immune system was most likely keeping the infection in check.  However, not until I had major surgery, was my immune system unable to combat the lyme bacteria which is why my symptoms came on overnight.

Many people could in-fact have Lyme but are not having symptoms because their immune systems are strong enought to fight it....  That's my take on all this.

[ewford]

Right.....so the puppy mill tests run through Labcorp that has hundresds of thousands contracts w/ doctors and hospitals pays their bills.  Labcorp offers how many tests, HUNDREDS.  IGENEX and their kind have a small clientel looking for Lyme bacteria and co-infections.  they have to charge accordingly and the tests take longer to culture.  If you knew anything about mycoplasmal bacteria, which you don't, it is notoriously hard to culture.  Sometimes over a month to get it to viewable standards.  Dr Lida Mattman was able to "feed" the bacteria to get enough to culture.  She verified Bowens Q Ribb test 316 times out of 316 samples.  The neg double blind tests, remained neg.  Do your research before you come here. IGENEX has passed EVERY single goverment test to conform to standards.  How many times does that have to be said?  

As far as research, I did, 14 months of it. Every test was negative.  3 Labcorp neg Lyme and Western blot PCR DNA. The western blot considered me neg. and yet I had pos bands, all the while getting progressively worse.  It wasn't until I contacted a researcher that I was told "No standard med  dr is gonna figure this out because they are taught NOTHING about intracellular bacterial infections."   This is coming from a Highly esteemed molecular cancer researcher with over 4 world renowned citation papers, 400 peer reviewed and accepted papers, and is on the board of several medical colleges/ research institutions.  I would believe him before i would believe you

  By the way I have talked to over 230+ people, with chronic illness that their doctors are saying they are perfectly fine.  And yet, they are not.  Are doctors that nieve' or are they that arrogant that just because Labcrap and Quest use test criteria developed from an outbreak over 20 yrs ago that it is definative?    It was just recently found out that RA is caused by a mycoplasma infection.  And yet rheumatologist refuse to treat it w/ antibiotics instead treating with cortosteroids and pain meds.  That is rediculous

  The goverment denied AIDS/HIV existed and gave some BS excuse "A monkey bit a black woman in Africa who had sex w/ an airline worker...."   Riiiiigggghhhttttttt  Look where their denial has gotten us.  Ever since the Pharmas found out it was more lucrative to sell pain modulating meds that find a cure, illness has skyrocketed.  If the Lyme spirochete is exactly like Syphillis (syphilis), and it gets into the bloodstream at a cellular level just like HIV, why would it/couldn't  it be sexually transmitted?  And since the Govt is doing SO much research (zero=nothing) on it, and yet all around the world researchers are finding out that it IS  transmitted that way.  That anecdotal evidence that says "no" is coming from the Govt and we all know that they would NEVER lie to us, right?  

Where in this post did I ever state there was a conspiracy?  

Here's a quote from a woman in Australia that got it from her husband.  

"In 2001 my new husband Vic, and I traveled to see Dr. Bernie Hudson, head of the Infectious Diseases Department at Royal North Shore Hospital, Sydney. Dr. Hudson agreed that Lyme disease is in Australia and could cause all of my symptoms.

Lyme is one of the fastest growing infectious diseases in America next to AIDS.

Recently American scientists found it in semen and other body fluids. People can be infected from a bite or sexually and misdiagnosed as CFS, fibromyalgia, M.S., ALS, Parkinson’s Disease, dementia, Multiple food and chemical sensitivity, etc. Many people never get the rash. Tests done on 150 ALS patients found Borrelia Burgdorferi (Lyme bacteria) in every one. Many M.S. patients have tested positive
for Lyme bacteria and improved with appropriate antibiotic treatment"

[ewford]

" Unfortunately, people like you will still not believe in this test. You will make comments like the Lyme is hiding somewhere in the body. That the Lyme bacteria know when you are being tested, so they will not be in the arms. It will never end. "


HMM, well it is a proven fact that the bacteria is intracellular.  indisputable.FACT

The lyme bacteria does NOT know when you are being tested, but it IS pleomorphic.  Indisputable FACT

The Lyme bacteria disables your immune system, or seriously weakens it.  perfect pathogen.  Almost too perfect actually.

Why don't you go read "Stealth Pathogens" by Dr Lida Mattman PHD Yale Nobel Prize nominee.  Or do you discount her expertise because it dosent come from the CDC or the IDSA. Or, are you going to say she wrote it for the money...

Say "Hi" to G. W.  for me next time you see him.

[navyguitar]

There are many corrupt doctors. Again, I am not saying that all LLMD's are corrupt or are doing anything wrong. My assertion is that they have a huge incentive to make money off Lyme patients. Everyone weights the risk to benefits of doing something. If it wasn't for the large profit margins, LLMD's would not risk their license. I have read where people have spent $100,000 on Lyme services.

There are numerous doctors that lose their license due to unethical medical practices. Just today, I was watching the news and they mentioned the doctor that treated octomom had his license suspended. He implanted 12 ebryos, and she had 8 babies. This is on top of the 6 kids she already had. He implanted those embryos as well. Another example pertains to an ENT doctor. He was diagnosing every patient with polyps and a deviated septum. It didn't matter who came in or what their real issue was. This was on an investigative news show (60 min, Dateline,). Why did these doctors risk their license? Money

[navyguitar]

I understand your take on things, and they do make sense. You may very well have Lyme, and you mentioned that you are getting better. I also realize that there are many individuals that have Lyme and do not know it. Igenex gets most of the business from referrals. Anyone can go onto the numerous boards or forums with any symptom. They would immediately be told they have Lyme and to get tested through Igenex. It wouldn't matter if they were suffering from another condition. That is where the danger lies. This people will not seek treatment for what they really have. I mentioned earlier that a lady sued her LLMD for this very thing. This is a LLMD that has many referrals from internet help forums. Her issue was hyperthroidism. Even though there was clear evidence that she was diagnosed incorrectly, there were still members saying that the Lyme caused the hyperthyroidism and the 22 other diseases.

Some people will not give up on the idea they have Lyme. It does not matter what you tell them. An LLMD could talk to them on the phone and make a clinical diagnosis and they would spend thousands of dollars in treatments. That is what is disturbing to me.

On the other hand, there are some LLMD that are saviors. They finally give treatment to people that really needed treatment. They have been told for years that they are hypochondriacs. If you were correctly diagnosed and are getting better with treatment, I couldn't be more happier for you. I wish I could figure out what is causing my ailments.  

[navyguitar]

Go back and read your post. You sound like you believe in all kinds of conspiracy theories. You could have written the script for "Under your Skin." I bet you believe that mosquitoes and fleas infect people as well.

On a serious note, have you tried SSRI's? I bet you have high anxiety levels. You may be suffering from hypochondria. If you have tried one, you should try different ones. It takes some trial and error to find one that works. It is worth a try. You probably have a more rational/logical stance pertaining to Lyme after lowering you anxiety levels.

[navyguitar]

I do not know who G.W. is. Lyme creates a perfect storm. It is highly profitable and hard to prove or disprove that one actually has it. I have no doubt ANYONE can get a diagnosis of Lyme, if they put in the effort. Almost everyone that goes to an LLMD is diagnosed with Lyme and co-infections. Even if the tests come back negative, one can be clinically diagnosed. Do you see the problem? Anyone without a diagnosis can have Lyme if they want it.

[navyguitar]

I'm not here to discredit or bash Lyme disease. I know it does exist. I'm just stating that there are reports of false positives and LLMD's over-prescribing and diagnosing. I just do not want someone to spend their life savings and potentially ruin their families lives. People shouldn't be so convinced that they have an incurable disease (chronic Lyme patients). Some chronic Lyme patients will believe they have Lyme no matter how much treatment they get. I'm just suggesting to everyone that it is important to keep an open mind.

Thanks

[ree427]

I understand where you are coming from, but you make it sound easy to get a Lyme diagnosis. I experienced just the opposite.  I had to see about 10 different doctors before getting properly diagnosed which delayed treatment. Now it's more difficult and costly to treat. The bottomline is we all have to be our own advocates!

[Melissa072]

Here are a couple of links regarding lyme in australia.

Hope they work

http://www.drmayne.com/index.htm

http://www.karlmcmanusfoundation.org.au/about-the-foundation/index.php?id=14

[ewford]

Look, i know someone that was in armaments stationed at a military base at Anniston Ga.  He worked w/ depleted Uranium, explosives the size of pencil erasers and bioweapons, among others I won't mention here.  Cataloging all the stuff we captured in the Gulf War and ensuing wars, and disposing of it.  There are items you have no clue about, my friend.  Don't patronize me, I have alot more knowlege than you might think.  

  Whereas you consult bloggers about Lyme, I talk to esteemed researchers.  One of them has FOUR Board certifications.   your research is 60min=TV show, and blogs=not research.  And if you look at the man who sued BOWEN.  Turns out that the HOSPITAL missdiagnosed his condition and the judge missed it during trial.  Go back and check your facts.

@Ree   me too, 14 months and 8 diff doctors, some seeing me 3 to 4 times each.

@navy again....You're a real peach, m8.  Please do MORE research and look into biofilms.  Chronic Lymes can be chronic, but reasons are because co-infections existed and were not treated.  Also, biofilms (a slimy proective coating) inhibited treatment and if your immune system was damaged it was harder to kill.  Please do US a favor, don't get treated for Lyme, believe that your illness  can't be it because other missinformed bloggers told you so.  Sorry, there are too many success stories of treating biofilms, progressive ABX treatment and utilizing the CORRECT ABX to treat succesfully.   You say Lymes is incurable.....who is your inside source?  You basing that on the CDC or the IDSA viewpoint?  Things change in 20+ years of research.  You know something we don't perhaps?

  Ignorance is bliss, knowlege is empowering.   You must be very blissfull.  Bless your heart...

[ewford]

BTW, why don't you research Morgellons.  Get back to me on that one.  One of the 230+ people I interviewed was diaged with MS, Lupus, CFS, ALS, Hashimotos by different doctors.  Neg Lyme test (s). 6 yrs later, her Lyme titre showed positive.  She is also suffering from Morgellons.  Hope to hear from you soon and what you have to say.  She lives in Norther California and is suffering terribly.

[navyguitar]

It is very difficult to get diagnosed by an MD who isn't an LLMD. If you go to an LLMD, you will likely be diagnosed with Lyme disease if you want to be. They will also tell you to stop eating gluten, put you on an SSRI, tell you to change your diet, etc. This coupled with the placebo effect will make a person feel better whether or not they have Lyme. It rules out celiacs disease, anxiety/depression, general health issues, and Lyme. Even if the person just feels better from the diet change and exercise, they will believe that the antibiotics are making them feel better. On the other hand, the LLMD might be curing them of Lyme disease that did not get diagnosed previously. It is hard to tell without a definitive test.

[navyguitar]

Did you notice that Karl tested negative for Lyme in Australia? Can you guess who gave him a positive test? Yup.. IGenex

He had co-infections as well.

Do they even have deer ticks in Australia? There is no vector there.

[navyguitar]

I was being facetious when I said it was incurable. Your logic and rational is disturbing to me. You are losing credibility by mentioning pencil eraser bombs and nuclear weapons. Please stay on topic. You probably will mention aliens, the Kennedy assassination, and landing on the moon being staged next.

[navyguitar]

I did some research on Morgellons. It seems to be tied to Lyme like many other diseases. It is widely diagnosed as delusional parasitosis. That basically means it is all in their heads. I went as far as watching some videos on it. I'm not saying it doesn't exist, and I feel for the people who have it. Hopefully, someone can do some research for these people and see if it is a psychiatric disorder or a health issue.

[Melissa072]

I respect everyones opinion on the subject.
I have also been to a couple of neurologists and have been given the run a round and all mri's and L.P. to date have been clear,  was told all my symptons are in my head, and that nothing is wrong with me, I have been diagnosed with another condition and handed a bottle of pills telling me it will make everything go away, (naturally the pills didn't do a thing) and in the end 'oh it must be ***** then' but I can't diagnose you as all tests are clear.  I'm willing to try anything for obvious reasons as my daughter when 7 started showing symptons too.
I'm fine, my symptons are with me 24/7 but very annoying and bothersome.
I'm a wife, mother, and run my own business, it has not slowed me down.
The Dr I am seeing as you will read on his site have evidence of the lyme bacteria being here, and one of the places it was found, is where I used to visit as a child.
Another lady here who I have spoken to who has lyme was in a motorized wheelchair several years ago, and with antibiotics now is almost sympton free, I don't think getting out of a motorized wheelchair would be possible with the placebo effect....
I have been given the diagnosis and all I can do now is see how I go on the antibiotics.

[Melissa072]

With regard to the aussie who died with lyme,  tests were carried out in the US and also Germany returned positive results...
It wasn't just the US

[ewford]

  Morgellons a delusional parasitosis?   These people have multicolored "threads" that emerge from open sores that don't heal. They won't burn at 1400 degrees.  How the heck is that delusional?  It ONLY happens in Northern California, and the US Army Pathological unit and Kaiser Permanente did a "study" on it.  And of course found "nothing". Research Nanotechnology and see what they are doing. The people interviewed said their "interviews" were a farce, including my contact.

Google "depleted uranium" and Gulf War and Gulf War illness.  You will see over 99,000 pages worth of information.  Lymes+depleted uranium+ bioweapons= chronic illness.  Your 8th grade edumacation is showing if you can't put 2 and 2 together.  Very well respected Cancer researchers have noticed the correlation.  But if you research it on the Goverments PubMed website, there is virtually nothing.  The goverments involved will deny, deny, deny until the evidence is overwhelming against them.  Look at Agent Orange.  I have done my research well, you have only scratched the surface.  I have a sandbox in my back yard if you want a place to bury your head.  

One last thing, keep an eye out for your wife/girlfriend/boyfriend and children becoming ill.  These Mycoplasal bacteria in Lymes coinfections can make family members sick too.  That's a documented fact.

  

[ewford]

For those of you unfamiliar about the Q-Ribb test, here is what the current labs use as an accurate test.  Labcorp and Quest do not offer such reliable methodology.


The Q-Ribb

The Q-RiBb test is an antigen assay based on the proprietary technology of US Patent 6,838,247, noteworthy both for its sensitivity and quick testing time. In Q-RiBb, the patients whole blood, body tissue or other body fluid is reacted with fluorescein-tagged Bb antibody to bind any Bb antigen that may be in the sample. Upon completion of the serial dilution, each diluted sample is observed under a dark-field fluorescent microscope to identify live fluorescing cellular structures.




The fluorescein-labeled antibody to Bb that is used in this test is highly specific for Borrelia burgdorferi. Cross-reactivity to other Borrelia species has been minimized through extensive affinity adsorption. The cellular structures most often detected by the Q-RiBb test are the cell wall deficient form of Bb. (Mycoplasmal)




Validity of Q-RiBb Test


The gold standard for laboratory diagnosis of infectious disease has usually involved culturing the causative organism from the infected host. Although the spirochete causing Lyme disease has proven difficult to culture, Mattman, Phillips, et al have developed a reliable, reproducible method for culturing B. burgdorferi from the blood of patients with Lyme disease. Mattmans medium and methodology are specifically designed for the fostering of cell wall-deficient organisms and their reversion to classic parent forms. (pleomorphism)




In a separate validity test, 316 whole blood specimens were tested and found to be positive using the Q-RiBb method. These same 316 specimens were cultured in Mattmans MPM medium for four to seven days, and then confirmed with affinity-adsorbed polyclonal fluorescent antibody to B. burgdorferi. All 316 cultures detected B. burgdorferi, providing a 100% validation of the Q-RiBb test.




Where is Q-RiBb Test Conducted?


Currently, the Q-RiBb test is available only for research purposes, through protocol physicians working with the Bowen Research and Training laboratory in Florida. Since Q-RiBb was patented in 2005, Bowen has conducted an extended trial on over 9,000 blood samples. The data from this trial is the basis for many of the articles appearing on this website. It is anticipated that the success of the Q-RiBb trial will ultimately result in the licensing of laboratories to make the Q-RiBb test available to the general public."

[ewford]

The bottom paragraph was when it was in research stages.

[ree427]

You are correct about the Mycoplasma infections...I spoke with Professor Garth Nicolson - he researches these infections because his daughter contracted it during the Gulf War and when she came home, infected him and his wife! Very scarey stuff!! I just thought I would share this.

[ree427]

The LLMD I see is not quick to diagnose Lyme and I hope others out there rule out everything else that could be causing symptoms before aggressively treating.  I would be careful with any LLMD who is too quick to diagnose without a thorough evaluation.  I had other doctors who were quick to misdiagnose me with Fibromyalgia and Chronic Fatigue Syndrome and these doctors where regular MDs.  It was my LLMD who was the thorough doctor.

[ewford]

  I'm glad you contacted him as well.  He is genuinely concerned about this "biotoxin" and has told me Soldiers generally have 100% Mycoplasma infections whereas Lymes patients have Lymes, Mycoplasmas and coinfections..hence the comorbidity.  I can understand how some here would not at first glance think this possible, but after all the interviewing I have done, and research, everything he initially told me has come true.  This is scary stuff and it is going to get worse with all the missdiagnosis' going on.  He told me specificially  "No standard medical doctor is gonna figure this out"  and his assistants echoed his statement.  Notice how after he started treating the soldiers that were ill at the Anderson Cancer Research Facility at Ft Mead they  got better?  Notice how when he found out it could be cured w/ long term ABX that he was released from his position and smeared.  He told me this infection is like a Russian doll inside a doll, inside a doll, inside a doll.  There are bacterial and fungal infections in the same bacteria,  Until people accept the fact that this is in fact real, there will be alot of ill people around.  And it won't get better unless doctors themselves start becoming chronically ill.  Then they will believe it.

Go look at all the Medhelp pages of Autoimmune, STD's, Bowell issues, headaches, CFS, Fibromyalgia and see all the people that are ill and their doctors can't figure out why.

[Weakandfalling]

Lyme diagnosis is a clinical diagnosis!!  That means you are diagnosed with Lyme based on your history, your symptoms etc.  Labs can give insights - but they are not to be used as the sole tool for diagnosing Lyme since there can be false results even with IgenIX.  

I know we live in a medical culture where doctors use diagnostic tests as crutches - often diagnosing you or not diagnosing you based solely on test results.  With Lyme you must reverse the gears of that mentality.  Lyme tests can be insightful, but they are not the end-all, the final word.  Remember that and, should you have a negative test though you have Lyme symptoms, and your doctor then dismisses the possibility of your having Lyme, you should know that you have not yet found a "Lyme-Literate Doctor."  You should then go and find one!  Your health and your very life are at stake!!

Be strong and refuse to be intimidated.  Good luck to you!

WAF

[Meilena_MHModerator]

Please keep in mind this thread is about helping the original poster with her test results, not to start debating other issues within the thread.

[shelli92]

Thank you to Meilena

I actually stopped visiting this site because i found one in Australia with people that are all going through the same thing and are there to support, listen and help where they can.
I don't feel there should be room for some one other than their doctor to say if they have Lyme or not. You don't know this person at all, you don't know her symptoms. Are you medically trained? You said that you didn't do much research, well do a little bit more.....we will soon show the world that there is LYME in australia!!!!!

[Melissa072]

Hi again everyone,
I'm still waiting for a copy of my test results, and he did say I tested positive 2 out of 5.
One of them I tested positive for was bartonella.
My babesia was negative but he says its a possibility I have that too.
I have been tested for so many other things, and to date all tests have been clear and normal.
My neuro with 20 years experience diagnosed me with H.E. a couple years ago and give me a bottle of pills and said take them and everything will go away, which it didn't.
Another neuro told me she didn't know what was wrong with me.
So many other Drs have told me different diagnosis's too, but tests said otherwise.
To date the only test to show anything positive is for lyme.
My cd57 test here was also low at 39 which indicates chronic lyme.
My main concern is to get a diagnosis as whatever I have, my daughter when 7 years old had symptons for also, today she is 10 and still experiences them.
I am currently organizing a 2nd opinion with another Dr who has dealt with many lyme patients and will be passing my results onto her for her opinion before I take any meds.
Thanks everyone for your help
Will let you know how I get on

[navyguitar]

I don't understand why so many people have trouble comprehending my intentions or my posts for that matter. I NEVER stated that Melissa did not have Lyme. My ONLY contention is that the probability of Lyme is VERY low. That is based on readily available information. No one has been able to provide ANY information otherwise. The only information made available is anecdotal assumptions such as the assertions you are making.

Meilena has already made her decision. I thought that my posts were relevant to the OP's original questions. I was advising her on the reliability of Igenex test results. This coupled with overwhelming evidence that Lyme does not exist in Australia was the basis of the following contention:

Melissa should not stop pursuing the possibility of other health conditions based on these Igenex test results.

[navyguitar]

I apologize to the forum and Meilena for making any comments that show dissension to Lyme proponents. I think it is unfair for people to only receive highly biased information. I could not post my dissension on other Lyme boards. This is because the views of the majority of medical professionals and the CDC are not considered reliable to Lyme boards. Although this is disturbing to me, I will no longer try to convey proven scientific evidence or mainstream medical information. I am assuming that this particular board only relies on anecdotal evidence. This is very surprising to me, as this is a medical help board with real medical professionals.

I always wondered why medical professionals never post in the Lyme forum. Their views, like mine, will be met with repeated attacks from board members. I was genuinely trying to help people like Melissa and Carrie. The still possess rational and logical mind sets regarding Lyme disease. They have not become overwhelmed by all of the biased information available.

[JackieCalifornia]

You just don't give up, do you?  Even your 'apologies' are insults.

You make the most egregious misstatements and then blame us for your comments.

You say "I am assumign that this particular board only relies on anecdotal evidence."  Wrong.

"This is very surprising to me, as this is a medical help board with real medical professionals."  Wrong.  No one here has ever identified him/herself as medically trained, and quite the contrary, there are repeated statements that we are NOT medically trained.

"I always wondered why medical professionals never post in the Lyme forum."  Okay.  And then your conclusion is:  "Their views, like mine, will be met with repeated attacks from board members."  Persecution complex?

"I was genuinely trying to help people like Melissa and Carrie.  The[y] still possess rational and logical mind sets regarding Lyme disease."  ... with the intended insult that the rest of us are irrational and illogical.  What a guy.

"They have not become overwhelmed by all of the biased information available."  Prove it is biased.  You have not done so.  

Do you know what an 'ad hominem' attack is?  It is when you attack the messenger instead of the message.  It's soooo much easier to beat up on people's credibility than to refute the facts.  

Your "apology" is simply a veiled means to deliver further obnoxious commentary.  Stop.  Just stop.

[navyguitar]

Please stop replying to my responses. You are even attacking my genuine apology. When I stated no medical doctors post on this forum, I was referring to the Lyme forum only. Almost all the other forums on medhelp have doctors replying. They would get attacked in this forum. Where are all the LLMD's that are so willing to help?

I can't believe you think the information provided here by others is unbiased. Lol