posted
i went to get a 2nd opinion on my igenex positive results with my Kaiser Infectious Disease doc after testing negative with them on an Elisa.
First let me say that it was almost like HE was getting the consultation..not me. He wouldnt stop talking. Just told me how hoaxy igenex is and that the dr who discovered lyme doesnt even rely on their results. He said everyone tests positive there and before even letting me speak...ASSURED me that i do NOT HAVE lyme.
He said an Elisa sometimes is TOO sensitive and is more than good enough to detect late stage lyme.
He refused to do a 3rd party western blot on me.
He said Lyme is the new candida craze. That everyone wants to CLING on to a treatable diagnosis for their health problems. And that the online lyme community is like a cult....feeding eachother false info.
He continued to say that its either just CFS/Fibro or depression and that most people who try antidepressants get better. And that docs who treat lyme are feeding off us sick people who want to believe in something. And there is no way that lyme docs can stay in business in california unless they are treating everyone that walks in.
So...here's my questions.
#1, has anyone tried taking an antidepressant and magically many of their unrelated symptoms got better? If so.....perhaps it is depression since how can an antidepressant help w/ lyme issues?
#2, do you ever wonder about igenex? im just saying....many of us have been advised to use them out of the passionate advice of other "lymies". Maybe we are unknowingly marketing for them because we so passionately want a diagnosis. Pls dont claw me...im just playing devils advocate and want some thought provoking input.
We expect our doctors to think outside the box...so im just challenging myself to do the same.
Im scared my antibiotics wont help me like they havent helped many with so called lyme.
im tired of all the confusion.
Thanks for your thoughts.
Posts: 160 | From california | Registered: Dec 2006
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posted
The first mistake was going to an ID doc. Several years ago, I saw one when I was diagnosed with CFIDS. He told me CFIDS was the new craze.
I didn't have that. I was a woman of a certain age and just needed to lose weight and get involved in outside activities.
My husband, who was with me, had to physically stop me from decking him.
You have to go to an LLMD ASAP and stop trying to fix this thru the charletans who get paid by the insurance companies to send us home and shut up.
JMOHO.
Posts: 867 | From PA | Registered: Jan 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am so sorry you are forced into Kaiser. You will never get anywhere with any of their doctors and you will harm yourself with stress in the meantime.
There was recently a discussion about false positives from igenex....not everyone is positive from them by a long shot.
Will you be seeing a LLMD? Do you need references for ones here in CA?
Kaiser let people DIE while waiting for liver and kidney transplants because they didnt want to spend the money to get the transplants at UCSF. These people had MATCHES and were ready for transplant and died because of MONEY. Kaiser will never accept chronic lyme as a diagnosis.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
First, let me say I'm sorry you're going through this.
In the past couple of months I've immersed myself in information about lyme disease and feel as if I've barely scratched the surface. The truth, IMHO, is that there just isn't enough known about lyme to get deeper than that at this point.
I feel as if there are a lot of theories and ideas presented as fact.
I think that in a situation such as this, where there's so little known and so much money to be made or saved by different sides, it's especially important to learn as much as you can and think critically. So good for you for asking questions! Keep it up; you're your best advocate, and it's important to know as much as you can about what you're dealing with.
To answer your questions:
I've tried several different antidepressants and anti-anxiety medications. Antidepressants made me feel like a zombie, which I didn't consider an improvement. This was years ago, before I ever would have connected my problems to lyme.
I didn't think of lyme until pain/numbness/tingling started. I was diagnosed with possible ms, fibromyalgia (without meeting any of the diagnostic criteria set by the AC of Rheumatology), and a possibility of developing thryoid disease in the future (?? don't we ALL have that possibility?). A friend of a friend suggested I get tested for lyme... here I am.
Still waiting for second round of IgeneX results - first round showed positive IgG and Inconclusive IgM; LLMD wanted to test again after my having been on abx for a month.
As for the IgeneX thing, I do question what that's all about. It's considered a "research" facility, but does meet the standards for a legit lab.
You can find info. about how NY state tried to "shut it down" unfairly and about how many people think it should be shut down. There are two sides to every story.
The fact that made me question it most was my discovery of this:
"IGeneX (Palo Alto, CA) has nearly tripled its clinical laboratory and research space to 11,200 square feet to accommodate rapid growth in demand for its specialized Lyme disease tests, according to president Nick Harris, Ph.D. Over the past three years, he says the company has doubled in size, growing 30% in 2004 to reach $6.5 million in net revenue."
That comes from g2reports.com - search IgeneX.
I think I mentioned above: fiscal incentive makes me suspicious.
With this information, I am being tested there myself. I'll probably research the h*** out of the results I get from there, though, as I do with everything.
I wish I had something definitive to offer you, but, as I doubt there's a whole lot that IS definitive about this disease, all I can say is keep learning, and do what you think is best for you.
Also, have you seen an LLMD? Try to do so, if you haven't!
Good luck!
Posts: 106 | From Michigan | Registered: Oct 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
My test from Igenex is also negative. Had to use clinical diagnosis.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
get yourself a LLMD as soon as possible. i tested positive thru igenex, got treatment from a LLMD for 4 months, got a second opionion from an infectious disease dr. who pulled me off all my antibotics way to soon b/c he said i was cured. well, in september i relapsed really deep, worse than my first symptoms, and have been back in treatment to date. good luck
Posts: 46 | From hanover, pa | Registered: Sep 2006
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I wanted to tell you that first your concerns are valid. But science is leeps and bounds ahead of your ID doc.
What scientists learn now could be 10 to 20 years away from your doctors office.And IM not talking about big pharma scientist.Interests are different there.
If you would like to investigate a microbial basis for your condition you might be surprized to find that infection should be considered suspect number one according to some of the worlds leading scientist.
Start with www.immed.org look at the qualifications of the people associated with that organization.My panel of ID docs couldnt hold a candle to those scientists read the bios of the doctors there.
You can also go to www.roadback.org and chat on the bulletin board and speak with many who treat diseases with abx alot of those diseases people are given no hope in the traditional world and treated with chemo-like drugs and immune suppressing drugs.
On abx they go on to live normal lives.But of course the earlier the better for recovery
I am a former radio show host who had CFS/FM and treated by a panel of doctors because friends of the family were large contributors of the hospital and I was feeling so ill.One member of that family passed away yesterday and Espn has run tribute to him all day .Well deserved I might add.I dont watch alot of football but my husband is from Kansas City and adored said philanthropist who played a huge part putting together NFL.
The point Im trying to make is I thought I had the best care anyone could have and yet I was getting sicker.The more I tried to tell the ID docs to look at infection (I felt sick) I just became an annoyance.Their tests always showed nothing so It was all in my head after that.
Then one day I had Dr.Katherine Poehlmann on my show and a whole world opened up.She led me to many resources that said of course if you feel sick you probably are.She was ill herself.She is no slouch as she was a part of the Rand think tank.And cured her RA with abx not immune suppressing drugs.
Her website is www.RA-Infection-connection.com its about alot more than RA .Many illnesses explored there being of microbial origin.
I went to www.immed.org and my regular GP said what the heck lets try it.You can find treatment considerations on the site.Three days into doxy I sware I wanted to die and I even called Prof.Nicolson and said are you trying to kill me.
He said you are now on the road to regain your health.Keep going and I did.You see the microbes are many and I understand you wonder if its Lyme.
There are many bacteria that can cause all kinds of havoc in the body.But testing is another matter .Its not like House where they scratch their heads and he looks under the microscope and says AH-HA.I tested with Igenex one doc said it was neg one doc said positive.
I also tested positive for C.and m.pneumonia with c.pneumonia out of range .I went ahead with the abx knowing that I might not ever know exactly whats running around in there as Ive been so immune compromised.
Dont ever let a doctor ID or otherwise tell you lyme or any other illness is a fad or unreal.They ARE NOT QUALIFIED to tell you that.
Go ahead and begin your investigation and you will find that there are many doctors who do subscribe to the infectious theory behind disease. Lyme as well as other microbes.
Roadback.org helps autoimmune patients find them and when you read the history and maybe the book recommended there it will help too.Although I am not on the marshall protocol a very serious protocol not to be taken lightly but there are many infectious conferences and access to published material you can look at on that board but I am not promoting that treatmant.(contriversial)www.marshallprotocol.com
Well Ive rattled on abit but if you get a positive Igenex believe it.And give yourself a shot at health if you have felt unwell.ABX will either help or not.But be informed.I wasnt and I paid a price.I hope Ive helped somewhat.
And if anyone comes along and reads this and is a football fan or from the great state of Mo.Im sorry for your loss of the gentle giant who so loved your state and the game of football....Lamar Hunt one fine fine gentleman,RG
Posts: 140 | From Texas | Registered: May 2006
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quote:The fact that made me question it most was my discovery of this:
"IGeneX (Palo Alto, CA) has nearly tripled its clinical laboratory and research space to 11,200 square feet to accommodate rapid growth in demand for its specialized Lyme disease tests, according to president Nick Harris, Ph.D. Over the past three years, he says the company has doubled in size, growing 30% in 2004 to reach $6.5 million in net revenue."
That comes from g2reports.com - search IgeneX.
Could it be that Igenex has doubled in size because more and more people are having lyme related symptoms and are not stopping at a Fibromyalgia, Chronic Fatigue Syndrome, depression, you need to lose weight, menopause, or its all in your head diagnosis?
Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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quote:Originally posted by karatelady: Could it be that Igenex has doubled in size because more and more people are having lyme related symptoms and are not stopping at a Fibromyalgia, Chronic Fatigue Syndrome, depression, you need to lose weight, menopause, or its all in your head diagnosis?
And now the Chronic Fatigue and Fibromyalgia Centers are testing their patients thru Igenex for Lyme disease. Smart docs!!!
Radiogirl....I do hope that "panic" reads your post more than once and also clicks on your links! Thanks for your awesome reply and for the links! I knew about roadback...but not about Dr Poehlmann's site.
posted
The first thing I did was try anti-depressants when I got sick because my mind was so wacked out but they didn't work. I tried everything for chronic fatigue syndrome and nothing worked. The only thing that worked was taking antibiotics and protozoal medication. The doctor is wrong on this one. I'm not feeding off of anyone. I'm too intelligent and independent for that nonsense. The proof is in the pudding.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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bettyg
Unregistered
posted
poster, what are 4 to 5 large cities near you, and i;ll check my llmd list to find if they are listed or not.
list the closest to you first ok!
radio girl, wow; what a post; i'm copying your post, and pasting it to treepatrol's newbie links of info. you provided a lot;
not sure where he could put it ... but you listed so many good sites that i have not visited! big thanks for your radio expertise you shared with us all!
keep sharing; we all learn daily around here if we have open minds, and they decide to work while we are on here!
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Under pressure from my husband, I recently went to an non-LL ID doctor.
I've been treated by an old semi-retired doctor with doxycyline but the herxing was so bad I stopped seeing him. He also was no help with pain, insomnia, panic attacks, etc.
The ID duck dissmissed my IGenex test which looked like this:
IGM
band 30 + (this is a surface protein probably the same as band 31)
band 41 IND
IGG
band 34 IND band 39 IND band 41 ++
These results are consitant with long-term infection, and show something is there--indeterminate meaning a positive response that is weaker than the control.
He was unhappy that I was even IN his office, that I should have been diagnosed by one of the other many doctors I've seen and I most definately did not have Lyme Disease.
Then he ordered tests for hepatitis, since it was one thing I've never been tested for.
I also had test results from LabCorp that showed I have a "genetic polymorphism" for drug metabolism. This test was ordered by a psychiatrist, and indicates I can't metabolize many drugs, including most antidepressants--thus explaining one reason why medicine can make me sicker than what it's supposed to be helping.
He said that was a crock, too, that nothing can predict drug metabolism.
What this told me about this doctor was that he can't think, and he won't learn. What a waste of time. And he made me cry right in his office, from the frustration of having to deal with such a waste of time.
Your duck sounds terrible!! And, unfortunately, his opinion is the prevailing "wisdom."
(Radiogirl--what an awesome post! I, too knew about The Roadback Foundation but not Dr. Poehlman.)
Oh, my brain is sore. I know I had more to say, but I'm out of mental energy!
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
The ID doc I went to told me Lyme wasn't in the South. Then he said I would have a bullseye. Then he said it "starts" with bad arthritis. He said "my knees would be as big as basketballs."
My PCP doc also told me there is no Lyme in the south. He also told me my horrible fatigue, dizziness, head pressure, fever, creaking neck so loud you could hear it standing next to me, and 30 other symptoms where all stress related. He went on to say you had a negative ELISA you don't have Lyme. He said "I wish you people would stay off the internet." "You people" what the heck is that? I wanted to say "why you worried about job security because of the internet we can diagnosis better than you quacks?" I said I have heard the ELISA isn't that accurate. He said "the results are not worth the paper they are written on." How is that for contradiction? You don't have Lyme the test told you so by the way the test is garbage. Then I saw what he diagnosised me as and it ****ed me off. He put down stress and psychological issues on the report. That is when I said goodbye duck and never saw he again.
After that I started researching heavy and found it had to be Lyme. Found an LLMD and was clinically diagnosised in 15 minutes. I wasn't telling him my symptoms he was asking me about certain symptoms. It was amazing about every symptom he asked I had. The symptoms were very specific almost like he knew what type of Lyme I had. Then through Igenex I was positive on 2 out 3 tests including a PCR. Thank god for LLMD's, the Internet and IGenex thats all I got to say.
Posts: 649 | From United States | Registered: Dec 2003
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posted
I'm sorry you are having to deal with this type of MD that won't listen or even think of different perspectives.
I have Kaiser as well and the 2 IDs I saw were both like that, one more so than the other. WHen I presented them with my Igenex WB that had 4 + and 5 IND and 1 + and 3 INDs and a + ELISA they said I did not have Lyme but had MS.
I was already seeing a LLMD out of pocket and getting better with ABX after 5 years of spiralling health problems. They said that the fact that my horrible arthritis had cleared up with 3 weeks of Ketek meant nothing.
They sent me to yeat another neuro in Kaiser and she gave me a clinical DX of Lyme.
Kaiser has a number of idiot MDs but there are a few good ones. My neuro is one of them. SHe has been working with my LLMD and getting the meds he prescribes covered by my insurance and I am grateful to her for that.
She doesn't know much about Lyme but is willing to learn and derfers to him for treatment changes.
The IDs did me a favor in sending me to her. If they had said I had Lyme I would have gotten 6 weeks of IV and that would have been that. SHe has gotten me 7 months of Mepron, and so far 9 months of orals for Lyme.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I tried multiple antidepressants before I was diagnosed with Lyme. I had been diagnosed with fibromyalgia, and people with fibro often get pain control form antidepressants.
None helped. All caused side effects forcing me to stop.
I can't say you have Lyme. I'm not a doctor and don't know your history. But I did a lot of research that brought me to suspect Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hello everyone. First off...thank you for such an informative response. I have read and was reassured by each and every one of you. This is a special place we've got going here to support each other.
I believe in my lyme diagnosis even more now. I even did a search here with keywords like...motionsickness, inability to sweat, anxiety, dizzyness, etc etc etc. I know not everyone has these...but to even read one posting of someone else going through the same bizaar symptoms as me makes me believe in it that much more.
I wasnt able to come back and reply right away because not only am i not feeling well ( Lyme and nasty stomach bug flu, and now a cold) but now my grandma is here in her room on her death bed (Alzheimers & diabetic age 80).
Its hard cuz this emotional stress makes my symptoms worse. It also reminds me of my own deteriorating health.
Again, thanks so much for your replies. I will come back in again to this post just to see if anyone else has thoughts. I hope that i can be just as supportive to you all on here as well.
Take care & talk soon. Posts: 160 | From california | Registered: Dec 2006
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posted
oh. one more thing. its funny that doctors think this "doesnt exist". My uncle was just here along w/ other family members. Him and I dont get along....but my sister was telling him that i had Lyme. He ended up telling her that he had JUST given his son a bath and had to pull a TIC off his back!!! He had to twist the lil f*&^er off of him!!!! I couldnt believe it. This is in california..slightly north of sacramento in auburn.
Apparantly my uncle knows nothing about lyme or its dangers nor did he even think to save it and get it tested. He wasnt even planning to test his son!!!!!!!!! After talking to my sis about me I think he's gonna test him now.
I thought how strange. If lyme doesnt exist much around here....pretty crazy that yet another family member has been infected. I live 2.5 hours south of him.
Just thought id share. Posts: 160 | From california | Registered: Dec 2006
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posted
I've done a lot of research and read well-reseached and well-written papers by physicians & researchers. My diagnosis of Lyme was not an emotional one. I've been through at least 15 different doctors who could not help me. Neuros, othopeds, physiatrists, mds, do's, osteopaths, chiros, gastro's, and on and on it goes.
There were only 2 possibilities that all my symptoms fit: 1. Chronic Lyme 2. Poisoning
If I'd had only a few symptoms then it could be many things. This is why the clinic diagnosis is so important.
It took the IDSA group over 10 years to accept that ulcers were caused by infection: H.Pylori. What does that tell you?
I do not know why they are so quick to negate Lyme and treat with MS. When you treat for MS, you are allowing the Lyme to grow like crazy.
BTW, candidiasis is real. Don't ask me how I know. I could write a book! I had to learn what to do on my own via books and the internet and guess what? I got well! MD's had nothing to offer. WHen I told them how much my treatment protocol (anti-fungals, probiotics, diet) helped me and changed my life for the better, they said, that's nice that you feel better, but it's still not true.
I was told by a duck one time that all I needed for chest pain was sleeping pills. I had to change drs. and found out I needed surgery. The first duck even has it in my notes that I was just over-sensitive. Excuse me? What was that? I wanted him to trade places with me so he knew how it felt. The insomnia was caused by the chest pain, not vice versa.
Ya gotta be your own advocate. Thank God for the internet so we can do our own research!!!!!
No matter what we do or say to the ID's, they are turning a blind eye to the truth. We cannot waste our time with them anymore. If we do, we will never get well.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
Odd that Kaiser has advertisements that say "Thrive." I think they should say "Writhe."
The second line on an ELISA test states that a negative test result does not mean you don't have Lyme. They got that right.
These ducks sound like cookie cutters of each other.
I had a negative ELISA after testing positive through IGenex Western blot, great response to antibiotics, years of symptoms following a tickbite. 30-40%(higher, even?) ELISAs are not accurate.
IGenex is a great lab.
Sorry to hear about your grandma.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Panic- my wonderful LLMD is so close to you. He has an office outside of Auburn in Nevada City. There is tons of Lyme there! I fly in from out of state to see him and it is well worth it.
I felt so relieved when I saw him and he asked, do you have.... and they were all those crazy symptoms that other MDs just couldn't believe and defintely couldn't explain.
PM me if you need a great LLMD close.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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This is exactly standard IDSA mantra . Realize that I tested negative on the Elisa Yet was glaringly positive on the Igenex Igm and Igg.I have full blown ALS/lyme and firmly Believe the 2 months of constant(1 gram per day of Rocephin saved/extended signifigantly my life.
An associate of mine tested negative(indeterminate) per Igenex results yet had a cd57 count of 15(private message me if you want my uderstanding of this test) who has had the "classic" Herxheimer reactions to abxs. I believe Herxheimer reactions are unique to spirochetal disease(not to be confused with gram - bacterial aftershock in sepsis cases).
Remember that Igenex is a CLIA certified lab that uses in only house staff and testing procedures and also uses more antigens from different Bb strains than any other lab. They specialize in the detection of tick born diseases only...of course they are going to find more positives than other "accredited" labs.
One final thought; I understand kaiser insurance very well(have worked in kaiser facilities), but you are going to have to go out of pocket for treatment to get your health back and see an llmd. You already have the most important test results in your hand. Now go out and get well with an llmd..your infectious disease doc will get you 0 success as he/she has to stand firm with his /her IDSA buddies
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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. Realize that I tested negative on the Elisa Yet was glaringly positive on the Igenex Igm and Igg.I have full blown ALS/lyme and firmly Believe the 2 months of constant(1 gram per day of Rocephin saved/extended signifigantly my life. 
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