posted
My test came back negative from Quest Diagnostics at Kaiser in Orange county. (Quest Diagnostics—Only band 66 was positive) The Head of Infectious Disease then said I didn’t have Lyme. Since then I have had the following tests but Kaiser refuses to change my diagnosis. Who would you suggest I use for a 2nd western Blot that Kaiser might accept? Fry labs? Stoneybrook?
posted
Also, does anyone know why Kaiser/Quest test says I don't have Lyme and every other test says I do?
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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quote:Originally posted by Lymetoo: Lab Corp .. maybe Stonybrook. Depends upon your ins company. Stonybrook would be better. They probably wouldn't accept Fry labs.
I've NEVER seen a test result like this one from Igenex!!
What makes my results different?
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Let me be blunt, if I may
Kaiser will NOT help you in any way, shape or form. No matter what you do, say, or show them,
they will NOT help you. Furthermore, they will NOT pay for any testing you have unless THEIR (Kaiser Dr.) orders it,
nor will ANY part of any prescriptions get covered unless THEIR Dr. writes it.
Your best bet, if you have Lyme and need to get it treated, is to get off Kaiser and go with a PPO.
-------------------- 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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susank
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posted
I think I see where your results looks different.
I think you tried to use the tab key and make a column for your IGM and then your IGG bands.
But they got scrunched together - I had to look at your results twice to see it.
You did OK - posted IGM and IGG results.
You got a lot of +'s - and scrunched together looks like you got too many per band.
Make sense?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Yes, I meant that I had never seen anyone with 6-8 pluses on each band. I'm glad Susan found the error. Your corrected form looks much more "normal" but still very strong.
That is basically good news as it shows that your immune system is working well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The next best is Stonybrook but you should forget Kaiser. Even if you get a positive, they will give you 3 weeks of Abx and say goodbye. There is no point in even trying.
Posts: 53 | From Jupiter | Registered: Aug 2013
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Elara - I will go out on a limb and say that there is probably no lyme on Jupiter. Unless you are talking about Jupiter California.
posted
Frankly, I've never seen a test result with so many plusses - very unusual, to me...
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
The head of infections disease is an idiot. 99.99% of ID docs follow old antiquated guidelines for lyme. Unless he's ILADS trained, he's the last person to consult when it comes to lyme. Only ILADS docs know how to interpret lyme. Run to an ILADS doc. You can find one at www.lymediseaseassociation.org. They are cutting edge when it comes to lyme. IMO, everyone else is a complete waste of time and money.
I'm no doc, but it sure looks like you have lyme to me. What are your symptoms? Also, the correct diagnosis for lyme is a clinical one (symptoms).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lax mom
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Member # 38743
posted
My husband had a (I was wrong, he had 5 double starred bands)...but he had been on steroids and cellcept. In fact, he was still on them when he took the test.
Which doesn't really make sense because he should have had a weakened immune response due to the meds.
willseremak: have you been on immunosuppressants in the past?
quote:Originally posted by Robin123: Frankly, I've never seen a test result with so many plusses - very unusual, to me...
I was infected in 2009. Sick with flu symptoms June-Aug, still neck (even had an x-ray of neck that showed nothing), bedridden, fatigue, massive weight loss.
In 2010 I developed burning in the legs eventually ended up in a wheel chair. Had a laminectomy to open up the nerves in my spine. (I know now the lyme was making my nerves swell up.)
The following is from a letter I sent to Kaiser: "Additional Lyme symptoms are in my medical record. I will highlight a few:
Polyneuropathy (G) (found by an objective test in with the neurologist (****** S******) sent electric shock through my arms and legs),
Tinnitus since March that persists constantly to this day (H), Auditory hallucinations for 3 days due to severe prolong (months) of insomnia (I), severe facial spasms (J).
All this was reported in a claim to member service April 2013. To which member services review panel responded “You have no signs or symptoms of Lyme.” (sic)."
I didn't know about Lyme until early this year, but in February I started screaming LYME to every doctor.
At one point 12 doctors from Kaiser ambushed me at an appointment to tell me I was crazy and didn't have Lyme.
(I used to run a real estate company with 24 employees, teach seminars, and sell 120 homes personally a year, making me one of the top selling agents in the United States.
I did go bankrupt in the real estate crash and happened to get Lyme shortly after so people said I was depressed and lazy!!!)
I had 2 western blots by Kaiser/Quest that showed only band 66. Then a *****ed until they ordered the Advanced Laboratory Blood culture that came back positive.
Even though they ordered it and member services said they would reimburse me in the end they denied the reimbursement. When the culture came back positive the still said I didn't have Lyme, but prescribed doxycycline for 30 days (NUTS!).
I told them to give me IV Ceftriaxone according to CDC/IDSA guidelines for Late Nuero Lyme but they denied that treatment. I didn't even ask for ILADS treatment. They wouldn't even treat me by IDSA guidelines.
I got much worse during and after the treatment. They definitely made my Lyme bacteria more virulent.
I think because of protein rotation (I read one study that said protein rotation can cause positive IgM as if you had a new infection.)
and the bacteria must have created biofilms (which I read makes them able to exchange DNA and become stronger.) Now I think I will actually die, no exaggeration!!!
Kaisers infectious disease department has barred me from all further appointments. In August, each time I got the following results I requested to see infectious disease and each time they refused to meet with me or review the results.
Before I forget in my chart they put "Unknown bacteria infection". They, by chance I'm supposed to beleive, decided to treat the "unknown bacteria" with doxycycline. A
ll the following tests were done 6 weeks AFTER finishing 30 days of doxycycline, 'not for lyme'. CD57 39 & 19, IL-6 65.28 (reference range .31-5.00), C-Reactive Protein 3.9 (abnormal), reference range , <= 2.9, Erythrocyte Sedimentation Rate - Abnormal.
Test after test after test after test was ignored. Legally this is called "Wilful Blindness".
I received the IgeneX results on Tues 9/3/13 (kaiser got the results on 8/30/13) (blood drawn 8/14). The infectious disease department refused to see me and said the results were not FDA approved so I still don't have Lyme.
I did try to explain that single location labs are regulated by the Centers for Medicare and Medicaid and not the FDA but they pretend like they don't know that.
IgeneX is government approved and they have a CLIA number, a Medicare number, and a CA health department number.
I really wish I could find a lawyer that understood medicine and test results, but I think if you go to a lawyer when they hereLyme they will just think I am nuts no matter how definitive my symptoms and tests are.
posted
Oh, I forgot to mention, I am currently wearing a heart monitor for 1 week to test for AV heart block.
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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posted
I should mention I was in northern Illinois when I contracted Lyme. I used to bike a 30 mile dirt bike loop called they Illinois Prairie Path. I told them I was bitten by over 100 ticks over the years but they don't care. I didn't know ticks were dangerous then.
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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posted
Thanks for explaining all this. My gosh, you've been through alot. Methinks that because you were bitten by many ticks that that would explain the numerous positive bands, as in probably many strains.
Something else you could consider doing is letting realtors know - we've been hearing that realtors can get tick-bitten when outside showing homes.
Going to pm you.
Posts: 13116 | From San Francisco | Registered: May 2006
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lax mom
Frequent Contributor (1K+ posts)
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posted
I mispoke. I looked at my husband's Igenex report. He had many positive bands, which was shocking but understandable because he was so sick, but nothing compared to yours.
Catgirl
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Member # 31149
posted
It sounds like you've been chronic for a long time. You will get no help from kaiser or any allopathic doc who is not ILADS trained. Odds are high they aren't.
I went undiagnosed my whole life and finally got diagnosed a few years ago by an ILADS doc several months after a tick bite (been bit many times).
You need to focus your attention on finding an ILADS doc. Trying to convince your physicians or anyone else who is not ILADS trained that you have lyme is a waste of time, and you don't need the anxiety from chasing the truth right now.
Unfortunately, they have been trained to dismiss anyone who thinks they have lyme. They think lyme patients want to have it and believe it's all in their head.
All of us on here have been through similar treatment by allopathic dos. They simply won't listen because the idsa guidelines are the ones they are required to follow. They actually don't know the idsa guidelines are old and out of date and flat out wrong.
We have all sought help from people who truly know how to treat chronic lyme (ILADS). They are light years ahead of everyone else.
All of your symptoms are common with lyme. Even the heart one. The sooner you see a lyme literate doc or specialist (LLMD), the sooner you can begin the path to getting your life back.
Once you find an ILADS doc, ask to be put on their cancellation list (they are usually booked out several months in advance).
There is a really good book you should read called "Cure Unknown". It explains the whole lyme controversy well.
Also there is a free download available (google) called: "Under Our Skin" (although I bought my DVD). It is an award winning documentary that follows the lives, treatment and success stories of a handful of lyme patients in the film.
There is TONS of info here on Lymenet for you to peruse. I learned so much here. No one else was giving me answers--Just the kind souls here who've been there, done that. Welcome to Lymenet, and happy reading!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Great post Catgirl!
-------------------- 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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Catgirl
Frequent Contributor (5K+ posts)
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posted
Also, I would sign up for a PPO if I were you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Thanks Surprise (paying it forward)!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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At one point 12 doctors from Kaiser ambushed me at an appointment to tell me I was crazy and didn't have Lyme.
Kaisers infectious disease department has barred me from all further appointments.
Thankfully, with healthcare reform, you can sign up for a new plan next month that will go into effect in Jan. Run from Kaiser.
That's really weird that 12 Drs would ambush you and tell you your are crazy. Really weird. [/QB]
The ambush was organized by the Head of Infectious Disease here at Kaiser orange county. He has taken a personal interest in making sure everyone knows I don't have Lyme since he was the 1st person I told I have Lyme and he said I didn't.
At that appointment with him he actually set me up in front of his computer and wrote a note in front of me to a psychiatrist saying his concern that I was mentally ill.
Later when I got a 3rd opinion in his department the 3rd Kaiser infectious disease doctor called me 3 hours before the appointment begging me not to come in because he said he spoke with this doctor and would not change my diagnosis or treatment even if he were to see me.
He begged me for about 10 minutes on the phone. He would not challenge the head of the department even though at that time I just got the positive blood culture results.
[ 09-06-2013, 04:19 PM: Message edited by: Robin123 ]
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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posted
Since they went so far as to not even treat me by IDSA guidelines I'm wondering if I can sue. Has anyone else here had a positive Western Blot for late stage Lyme and been given only doxycycline (in violation of IDSA guidelines) or not treatment from Kaiser?
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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quote:Originally posted by willseremak: Later when I got a 3rd opinion in his department the 3rd Kaiser infectious disease doctor called me 3 hours before the appointment begging me not to come in because he said he spoke with this doctor and would not change my diagnosis or treatment even if he were to see me.
He begged me for about 10 minutes on the phone. He would not challenge the head of the department even though at that time I just got the positive blood culture results.
- That is horrible. Any chance you can find an LLMD and be able to pay for it? You will never get anywhere with Kaiser.
If you sue, you have to find a DR with the guts to stand up to Kaiser.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I doubt it. Kaiser is following the test they ordered, not IGeneX's. I don't think they even have to follow IGeneX's test. You also don't need the stress (really bad for lyme patients).
I think many of us have wanted to sue at some point. It's going down the wrong path though (just my opinion). We need to get the idsa guidelines changed. Kaiser was following them, so IMO (and I'm no lawyer), they are in the clear.
Turn you feelings of disgust over the unjust of what you've been through into something more positive. Focus on getting better through an ILADS doc.
Hang in there Willseremak. We've all been there.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
If I were in your shoes I would sue. In Canadan we can't. Which is not right.
It is the principle. You will probably lose unless you can find a lawyer to do pro-bono. Insurance companies have bottomless pockets. They will drag it out until you are destitute.
But if you have a lawyer who cares they will get the media involved.
I believe social media and media is the only way we will win this lyme battle.
Keep in mind first and foremost is your health. You need to see an LLMD ASAP and start treatment ASAP.
Also, I honestly thought Kaiser was a nickname.
How fitting that the insurance company chose the name Kaiser...just saying.
We believe you and will support you on your healing journey.
If you post in Seeking someone will PM you LLMD contact info.
Many best wishes
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- NOT FROM Kaiser Insurance - but ABOUT Kaiser.
Explains the medical-political atmosphere. This is a public service page by volunteers. A "MUST READ":
[ 09-06-2013, 03:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As others so eloquently state, there is absolutely ZERO chance for proper diagnosis or treatment of lyme or other tick-borne disease from Kaiser.
I also think there is zero chance of a lawsuit being productive. The IDSA criteria is just so stacked against that.
Even with a positive Western Blot (or other), they actually require it to be a RECENT bite, CURRENT case, and they would actually also want 2 other tests to be positive: ELISA and LUMBAR PUNCTURE. They want to see THREE different kinds of CDC positive (some of which are inferior tests for many reasons).
They want THEIR OWN testing - and often manipulate factors to achieve a negative. This can be done by the timing of the draw, the shipping of sample (and delays), the lab doing the test, etc.
Still, even if they agreed to treat, they DO NOT KNOW HOW to do that. They would offer you a very short course of a single antibiotic (and that would CAUSE chronic lyme by not treating the cystic form of lyme).
You need an experienced, skill, intelligent lyme literate doctor, one who is ILADS-educated.
Dropping Kaiser is your best best but, still, most LLMDs are not able to obtain insurance coverage from any companies.
This fabulous lyme education / advocay group is based in your state. Be sure to connect for a strategy - and contact your area lyme support groups.
Lyme Disease.org -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm not sure if ILADS would be comfortable sharing names of doctors from your area who may plan to attend the "Lyme Basics" course in San Diego next month - just posting this to offer hope that ILADS education is coming to your state in October.
- Just got an email reply to my inquiry about web streaming the conference as done in the past 2 years. Sad news but I figure this must cost a ton of money and a lot of staff power / equipment. Sigh.
ILADS Response: "At this time there is no plan to live stream the San Diego Conference."
ILADS is proud to announce a one day Basic Lyme course in San Diego, Thursday, October 17, 2013.
AMA CME Credits
This course is designed for medical professionals who are new to the treatment of tick-borne diseases, or would like a refresher course on the basics of diagnosis and treatment. It will also serve as a primer for physician assistants and nurse practitioners who are practicing in the offices of Lyme literate physicians.
ILADS encourages participants to continue their learning October 18-20 at the annual ILADS conference in San Diego
The kind of doctor you need will have gone through (and be part of) all this. Some naturopathic doctors (ND) are ILADS educated, too. You may have some options in that regard. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, you do NOT need another lyme test - ever, really. This speaks volumes to those who are properly educated:
You said: "Positive Advanced Laboratory Services blood culture test - Positive after only 6 days."
Add to that the extremely distinctive Igenex band results, history, symptoms and it's all crystal clear, indeed - to a true LLMD, of course.
If you were to have any further testing, it should be for other tick-borne infections (sadly, lyme usually does not travel alone).
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 09-06-2013, 05:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I imagine that this can all be so very overwhelming. After a minute or two of feeling the enormity of the task that lies ahead, rather than this information hitting you, I hope it can put some power under your wings.
If you need suggestions for what kind of very specific supplements might be of help while you locate a LL doctor, be sure to ask.
You might also consider a rife machine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
As others have said, DO NOT waste your time and energy trying to sue them. Wrong as it is, they have far deeper pockets than you do to fight this. You will never win.
Save your time and energy for getting the best Lyme doc you can and for treating. Get off Kaiser, get a PPO through the insurance exchanges, as others have said.
If you read the Kaiser papers that Keebler references, you will see that they are incorrigible and you will never win against them.
Posts: 3771 | From around | Registered: Mar 2008
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