posted
Hello, im new to Lyme and am currently trying to gather information. It seems there are two different sides to this argument.
I understand that Igenex labs have been under scrutiny in the past for producing too many positive results.
Has anyone known anyone who has tested negative for lyme through these labs, or known anyone that tested positive but had no symptoms?
I guess im just trying to determine the credibility of the test since there seems to be polar-opposite views on the matter.
Also, how helpful is the treatment that you guys recieve? Im a bit nervous that if i do test positive for Lyme, that the long term antibiotic treatment will harm my body or make my body antibiotic- resistant.
Thanks for reading everyone!
Posts: 22 | From Oak Lawn, IL | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I was tested for Lyme by IgeneX in November. The Western Blot was inconclusive but the PCR was positive - which means they found Lyme in my DNA. Western Blot was negative done by Quest Labs earlier in the year.
I have MANY symptoms of Lyme as well as a suspicious lesion that showed up on my brain MRI's (done for sudden hearing loss this past year) during the past year.
I totally understand your apprehension about TX. I have the same concern about what ABX will do to my body and health.
I have always had a strong immune system and took excellent care of my body, exercising daily and eating right. That might be why I did not recognize the early subtle symptoms. I can count on one hand the number of ABX I have taken in my 57 years prior to this illness.
I wish I had some answers for you. All I can say is keep an open mind and read as much as you can about Chronic Lyme. Talk to others (patients and their families) who understand this illness. I wish you the best.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I was tested by IGenex, and tested negative. I never had a known tick bite, but have been in treatment for two years. I am 90% better.
I didn't believe it either, and went kicking and screaming to lyme treatment. Treatment works!
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Hi bailey. Thanks for the reply! I guess I'm just wondering if you can get falsely diagnosed from running these labs, you
know? I'm worried that ill be ignoring a different illness if I get tested by one of these specialy labs and I test positive.
Or if igenex turns out negative and another lab tests positive , how do I know which one to believe? It just all seems very confusing to me! My neuromuscular dr believes I
may have a metabolic disorder of the muscles which may be causing my symptoms. If I do get a diagnosis like that and I go on to further investigate lyme, how will I know which diagnosis to trust?
Posts: 22 | From Oak Lawn, IL | Registered: Jan 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
frankie, fear long-term lyme, not long-term antibiotics. Lyme will harm your body like you cannot believe and steal your brain. It even kills people.
When I was sick with it, I wished for death becaue I could not stand the torture of lyme anymore. I used to tell my husband over and over that I should be taken out and shot, and that it was a good thing we didn't have a gun in the house because today I would use it, and I would put my finger to my skull and pull the trigger.
That's how you get after you have suffered with pain and numerous other types of suffering that you can't even imagine (not being able to sleep, continual nausea, continual dental pain, profound fatigue that never stops, and on and on) month after month, year after year. Many are bedbound, in wheelchairs, and housebound from lyme. Will antibiotics do that to them?
Antibiotics are not going to do anything near that, even if taken for years. There is no issue here.
Long-term antibiotics gave me my life back. Lyme had stolen it from me for 5 years. My husband says the lyme doctor gave him his wife back.
I took antibiotics for a little over 3 years. It could have taken less time if I was given the name of an outstanding lyme doctor right off the bat. But, that seldom happens. So, I wasted 2 years with a lousy lyme doc, then got to a good one and was finished with treatment in 13 months.
That was nearly 7 years ago now. Since completing my treatment, I have been totally symptom-free and I am enjoying my life. I have the same life I had before lyme disease.
That's like a miracle to me considering how sick I was with lyme. I couldn't stand for more than a minute, hold a phone for more than 30 seconds, dreaded having to rise up from a chair, was losing my memory and other strange brain and neurological problems, and other symptoms too numerous to mention.
I also have at least 3 friends who got rid of this disease by going to doctors who prescribed high dose antibiotics long-term as recommended by Dr. Joseph Burrascano.
My lyme doc told me not to be concerned with antibiotic resistance. He said it is not an issue with the meds that are used to treat lyme and its coinfections.
He said that the only time you must worry about antibiotic resistance is if you are being treated with a medication that is THE ONLY ONE that can be used to treat some other particular disease--call it cancer, just for an example.
If you become resistant to the one and only medication that cures cancer, you are in trouble. Right?
Well, the lyme docs are not going to give you such a medication, so you will never have to worry that thanks to lyme treatment now you are resistant to the one medication that cures cancer or any other disease. Never gonna happen.
The meds you will be given are common and there are many, many to choose from. None of them are specialty medications where antibiotic resistance would ever be an issue. And, the docs change your meds from time to time also.
So, just put your mind at ease on that count. The worst thing that happens from long-term antibiotics is that they give you yeast in the gut. You have to work hard to keep it under control while taking meds. It resolves once you stop the meds.
One particular lyme med can cause C. difficile which is a persistent diarhhea. It can be difficult to get rid of, but that is about it. You do eventually get rid of it.
I had rheumatic fever at age 6 and was on antibiotics for it for a long time. I took them daily for a few years, then as needed until 9th grade--so that was 8 years of taking penicillin-type medications. It cured me. Without long-term antibiotics, I would likely be dead of rheumatic fever. So, the choice is not hard to make.
This is not an isolated case. Not only are long-term antibiotics given for rheumatic fever, but also for TB, AIDS, and even acne. Many other diseases also. So, treating lyme is not unique when it comes to the need for long-term antibiotics.
Here is what Burrascano has to say on the subject:
"SAFETY
Over two decades of experience in treating thousands of patients with Lyme has proven that therapy as described above, although intense, is generally well tolerated. The most common adverse reaction seen is allergy to probenecid. In addition, yeast superinfections are seen, but these are generally easily recognized and managed.....
Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment." (page 22)
If you have not read and STUDIED the Burrascano Lyme Treatment Guidelines (above link), I strongly suggest that you do. They will answer virtually all of your concerns and will educate you on the disease that you have.
In case you don't know, Burrascano was the most successful lyme doctor on the planet for years and years before his recent retirement. They came from all over the world to be treated by him. He wrote his Guidelines document to teach other doctors what he knew about treating lyme disease. All for free too!
And, regarding Igenex labs, Burrascano consistently recommends them year after year, even as recently as October 2011 at the Lyme Conference in Toronto. So, there is no issue with that lab. They have the most accurate and complete lyme disease tests. They specialize in tick-borne diseases. Other labs can't hold a candle to them.
I had undiagnosed lyme for at least 10 years before a doctor figured out what it was. Since I was happily married that entire time, I wanted my husband tested for lyme to see if perhaps I had passed it to him sexually or otherwise.
He had no symptoms of lyme or any other disease. He came back negative on the Igenex lyme test.
Don't believe the adversaries of lyme disease treatment that try to bad-mouth Igenex. I hope you know that there is a huge medical controversy surrounding lyme disease and its treatment. The medical community has divided into 2 camps: one that says lyme disease is easily cured with 28 days of antibiotics. and the other that says you must treat the lyme patient until all of the lyme symptoms are gone (just like we do with all other diseases).
If you read information from the first camp, you have to know where they are coming from. They intend to discredit the lyme doctors, the Igenex lab, new lyme tests, long-term treatment, etc. They speak evil of Dr. Burrascano and attempt to get the medical licenses taken away from all lyme doctors. In other words, they are at war with our side!
If you want to watch a short video that explains the lyme controversy, here is one. It was done by a Boston TV station over 2 years ago:
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
When it comes to lyme disease, there is a lot to learn, my friend. An awful lot to learn.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The way you find out if it is lyme or some other disorder is to treat for lyme. You will know by your body's reaction to the treatment if it is lyme or not.
If it is lyme, there WILL be a reaction if you are put on high-dose antibiotics that kill lyme.
My main symptom for 10 years was extreme muscle weakness. What is yours?
A good lyme doctor will make your diagnosis based on many, many items of evidence, not based on any test.
Here is what Burrascano says about diagnosing lyme:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Notice the first sentence. No test can tell you whether or not you have lyme disease.
Notice the last sentence. A very important factor in making the diagnosis is response to treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
frankie, as TF said read and learn, then read and learn some more everytime you RE-read this link you will retain/ get more from it. When your suffering its hard very hard to comprehend, Grasp mentally or understand it for what it is.. Each and every time you go see a reg or just a doc who treats lyme read some more on this link to see if you are getting treated right. I know I wasn't from just what I read in that link, and I'm still not getting treated right but I'm still taking the meds he'll give me until I see a LLMD at the end of this month. You couldn't pay me to stop the abx i'm on right now, they are holding the lyme at bay/ from progressing for now... http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
When I first came on this site I needed help just to type the questions. No joke.
all 3 of my tests came back neg. no Igenx as of yet, but I know what I have inside me and I know what I have to do..
Prayers that you find your way...
[ 01-11-2012, 11:48 PM: Message edited by: Cracker Jack ]
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
One more thing frankie. I had so many test everything under the sun some even said; you don't have lyme without a blood test or test results to look at. A ENT & a family doc even gave me steriods. (Steriods WTF!) The ent was one of the doc's who said you don't have lyme and then wanted to do surgery on me. Had I not been to this site I just would of tried anything to make this mess go away. Everyone in his office was post op or pre op. If theres is something I learned a long time ago it was tobe very careful of trusting anyone by just what they say. It should always be backed up with facts. And the one thing I found on this site is cold hard facts as to this disease and the treatments for it..
BTW, I ended up in the hospital with heart problems from lyme & co two days after seeing that ent quack (who wasted precious time). I got lucky it didn't cause me any permanent heart damage then or as of yet.. Had I known more back then I would of gotten a different doc (one who treats lyme) to give me the right abx until I could get in with a real LLMD & get the IgenX test. Your lucky if you can get it done fast most all of the docs around me won't use IgenX. And I have no clues why, because that makes no sense.
All my tests are neg, but I did get a clinical diagnosis by a doc who has treated lyme for 15 + years. But I want my life back so I made a call to get on a real LLMD's list.
Prayers, PS; don't waste time get tested. Its money well spent. Isn't your life worth it, I know mine is.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
fankieb said... "I understand that Igenex labs have been under scrutiny in the past for producing too many positive results."
If a doctor misdiagnoses a patient who goes on to suffer for weeks,months or even years with no relief, then later learns his patient had Lyme and he missed it, setting him up for legal actions..
You better believe that doctor will blame the lab that ran the test proving him wrong, the other doctor that saw his patient and diagnosed him correctly, and even the raisins in Post Raisin Bran if he thought it would cover his backside.
THAT is why there is a controversy.
IGeneX is a very good lab that is under constant attack by total idiots who have a LOT to lose if they are proven wrong with their yadda yadda yadda theories and dipstick ways.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ignenex is VERY credible. There are no perfect tests just yet as lyme remains a clinical diagnosis with tests to help guide that.
You either have lyme or you don't. You need to know the truth. Being assessed by an ILADS-educated LLMD is your best bet. There is a newer test (links below).
But the argument about not really wanting to have the test as, if positive, treatment can be too harsh . . . well, yes, that is understandable.
Treatment can be harsh. But you have choices in that and support methods are essential to your safety. Most LLMDs are keen on support methods.
Also, if you have lyme and do not treat, that can be beyond devastating a million times over. Truly.
Diagnosing Lyme Disease (and/or whatever else it might be)
Timaca's Thread there is very important, too.
==============================
I mentioned that you have some choices in treatment - and that support methods are widely used by most LLMDs. Be sure to see the articles and books here:
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I had negative Igenex tests when I was FULL of Lyme. I was so sick I wasn't making antibodies, so the tests had nothing to find. This is common in Lyme testing. If you are positive, you are positive. If you are negative, you may actually be positive.
I've been treating for almost 4 years and LIFE IS SO MUCH BETTER NOW!!! I can't believe the difference. I was in complete denial about how sick I was, and how much sicker I was becoming every year.
You couldn't pay me enough to go back to my pre-diagnosis days. I'd rather die.
Igenex is entirely credible. The CDC, NIH, IDSA, all major hospitals and universities, and 99.99% of doctors are either willfully spreading misinformation, avoiding the diagnosis for financial and legal reasons, or simply know nothing about Lyme.
It is a manufactured controversy.
Watch Under Our Skin and read Cure Unknown.
It's hard to sound so weird and paranoid when talking about Lyme. But the deck is stacked against us when it comes to finding accurate diagnoses and appropriate treatments. You really have to do your research and take this into your own hands. The regular medical system has nothing to offer you.
Again, I sound weird. Talking about Lyme is just as difficult as treating it!!
Good luck to you!!! I hope you find what you need.
posted
Wow, thank you so much for all the replies everyone. Just to let everyone know, i just ordered a copy of "Under Our Skin" and everyones comments have been so incredibly helpful.
Its nice to know some people dont think its "all in my head" and are getting their lives back with this treatment.
I have dealing with whatever has been going on with me since i was 19, and for the first time i feel like i see a ray of hope.
Thanks for making me feel at ease about the antibiotic treatment too. I have gotten the name of several LLMDs that are relatively close to my area and im going to schedule an appointment as soon as I can get in.
Im ready to get my life back. You guys are all some great and strong people! Thanks for your help everyone.
Posts: 22 | From Oak Lawn, IL | Registered: Jan 2012
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quote:Originally posted by frankieb: Just to let everyone know, i just ordered a copy of "Under Our Skin" and everyones comments have been so incredibly helpful.
Its the only way you will know if you are getting treated correct. Remember there are good and bad docs & then there are the best at what they do.. I hope you work your way up to the best, as I am doing. Get on a list with the best and use the rest.. I'm using the doc i'm with now for the abx to hold the bugs down until I get in with a real LLMD at the end of this month..
Good Luck & with this board you are well on your way & so am I.. I'm not crazy!!!
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
Wow, watched under our skin and im slightly terrified! What a scary insight into this disease.
I feel such a sense of camaraderie with the poor people in this film.
I feel just as bad for the heroic Drs in this film that are persecuted for helping all of these unfortunate people.
I pray to god if i do test positive that i dont get that bad.
Ive gathered enough information and im ready to make that appt. Wish me luck as i wish all of you!
Posts: 22 | From Oak Lawn, IL | Registered: Jan 2012
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quote:Originally posted by manybites: You can go to germany and try treating if you want to avoid the antibiotics but be careful as there you will get IV ozone and if you have babesia IT WILL feed babesia and than you need to treat it right away.I would not advise a full blown babs case to be treated with this metods unless you treat babesia first with antibiotics and than TRY Bionic.
That is interesting. I didn't know that about babs and ozone. Do you have any more info, or can you share where you learned this? I'd like to read up a little. Thank you.
Posts: 707 | From Colorado | Registered: Jul 2010
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posted
it's more effective than most labs out there, but no perfect testing exists yet.
i don't know anyone who has had a false positive. most people who get tested for lyme obviously have symptoms, or they wouldn't be testing for it.
i sincerely believe i would be dead right now if it wasn't for anti-biotics, so i am a big believer in them.
i am also someone who doesn't believe in putting any type of medication in my body that i don't absolutely need.
there's no way i could have survived without anti-biotics though, and having untreated lyme is FAR more scary anf horrible to me than the possible side effects of anti-biotics!
Posts: 442 | From usa | Registered: Oct 2010
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posted
Hey guess what everyone. I got my test results over the phone from the llmd office a few days ago. I was told i tested double positive on two bands and inconclusive on the other three. Is anyone ignenex savvy? What does this mean? Im not sure which bands i had the double positives on. Thanks!
Posts: 22 | From Oak Lawn, IL | Registered: Jan 2012
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Please do not delay.I have had the same concerns 3 years ago .
I was told here not to wait but to start treatment.I spent $ to test with muscle testing ( over time you will read here ) and I was found that had lyme disease while I have had an Igenex pozitive.I insisted to use Rife and , Iv blood irradiation but I wasted money and 6 months fighted only on herbs.
I read all the info and wanted to make sure I did the right decission.I was too sick and I continued to see and test with QXCI test as well that showed I have lyme too.BUT BE AWARE that QXCI is frequencies.In my case showed more disease due to just reeived a pozitive for FRY bug that is an apicoplexa.
Over the past all these years the treatment has changed and we have seen that using only combo of herbs and antibiotics you can kill them .
I am one of them that have tried every metod.I even went to germany to treat lyme with bionic and used all the homepathic formulas on earth collected them for coinfections and found out that yes the antibiotics are necessary and you can not avoid them .
The infections left untreated are more dangerous.Babesia , FRY BUG as well but worst of all BARTONELLA that needs to be adresed first.
There are many protocolls that you can be in herbs only -it did not work for me and I do not think any made progress to eradicate the lyme and coinfections in herbs only. The ones that saw since in the begining a good LLMD they are the ones that moved on with their life.I would suggest an MD as well to muscle test the antibiotics and herbs that the body needs first.
posted
My husband tested negative for everything.But he has alot of ALS symptoms. Main issue is out of breath all the time. Lots of neuro symptoms. Limps and left foot drop now. His liver enzymes keep elevating with every drug he takes. Very frustrating. But first few weeks on both rocephan and Claforan he improved. But then has to stop because of liver enzymes. Plus this week had major allergic reaction to Claforan
Posts: 305 | From United States | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I always think to myself every time I hear from the 'outside' that Igenex produces too many positives:
Well, who are the people paying the money to get the tests done? People with Lyme symptoms! It is not a random sampling. And, the bands that are Lyme bacteria specific ONLY: Wouldn't be there is Lyme wasn't there.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I think IGENX is worth the money even though it was out of pocket for me.
I had a stupid ENT doctor, she did order the tests for me that confirmed i had Lyme,
I later switched to an LLMD that sent my blood to IGENX, I not only had Lyme but also Babesia & Erlichiosis.
The ENT in Lewisburg PA gave me 10 days of Doxy & said you are cured!!! I disagreed with her and she acted like how dare you !!! I will not treat you any further for Lyme... but i WILL treat you for MS... Ummmm I don't have MS why would you treat me for it....????? she condesceningly said I know its hard to grasp, no one wants to hear bad news... and looked at me like i was STUPID!!
I had a report from a radiologistsaying the the results could be from my LYME!! but the ENT refused to accept that.
I switched doctors... so beware of ENT in Lewisburg PA, she is Lyme dangerous!!
Posts: 86 | From Central PA | Registered: Jan 2010
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