posted
Has anyone ever been tested (western blot) through Kaiser and shown positive? Has anyone ever been treated through KP and their infectious disease dept? If so, success stories? Thx
Posts: 7 | From Portland, Oregon | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Frack,
I also live in Portland. Kaiser is NOT a good place for a test - not at all. Stay far, far away. There is no infectious disease doctor in the state who will treat lyme beyond a very short time and, then, only if the bulls eye is present and the tests are all CDC positive. But they don't test all the bands. It also has to be a brand new case for you to have even a chance.
Some doctors here have even turned away people with fresh bulls eye rashes from recent tick bites saying "there is on lyme Oregon". Even in the rare case of a doctor willing to treat someone with a fresh rash, it's a very short dose (maybe 9 days' worth).
You need to connect with the Lyme support network as there are no LLMDs in Oregon but there are some options with ILADS-educated LL ND (naturopathic doctor). To see a LLMD, most go to California or Seattle.
I have to rest now but will send you some links at little later.
This will help:
Is this a fresh bite, new symptoms? Or from past?
Have you already seen an ID doc there? If so, how did that go? -
[ 06-17-2010, 03:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Not a fresh case. I was tested two years ago when I was very sick...one month post two bites when I was in TN. Two months of evry test in the world, mri, heart, stress two ER visits and an overnight, all very scary.
The western blot showed only 41 so I was diagnosed as negative and no treatment was ever given.
Now I have other symptoms appearing and I am with Kaiser. My KP doctor is sending me to meet with an infectious disease dr within their system. Not happy but don't have a lot of money to go to dr in Tigard. So looking to see if any good news about KP.
Posts: 7 | From Portland, Oregon | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ohhh . . . sorry, you must have been writing at the same time I was composing. So I may repeat stuff here. Sorry.
=========== Frack,
Looking through your posting history, I see that this is a chronic situation. I will post some excerpts from your past posts so that others who reply here have a better idea of how to answer your questions:
Frack77 posted: ----------------
"After two years I am heading back to recover tests performed and pursue treatment if called for. I just received a test result from 2 years ago this July that says present for band 41 on a western blot IgG test.
Is that enough to say I was infected and to treat with new established criteria?
================
another post by Frack77:
"Two years ago I removed 2 ticks after a visit to TN. I live in OR but after 3 months of hell and every DR known to man, I was sent out to sea.
I grew better and recently had an attack of low back pain and then my neck started hurting, just to either side of my low neck area, around c-7. It hurts to press on the area. It has been a month now. Help! Is this a common area of L-pain? " (Frack77 )
========================
I do hope you can contact OLND. They are a wonderful organization.
The "Controversy" article below explains so much.
Good luck. ---------------
Sorry to say, there are no LLMDs in Oregon. The state medical board wants it that way and has worked very hard against lyme education for doctors. They especially discount chronic lyme in this state and have never heard of other tick-borne infections.
For LLMDs, patients usually travel to California or to the Seattle area.
However, there are couple of ILADS-trained LL ND (naturopathic doctors). That's a good thing. Be aware that any ND you see should be ILADS-educated. We are very lucky to have a few NDs here who are well educated regarding lyme.
Many NDs want to get the body stronger, thinking the body will then take care of matters. Yes, support is absolutely vital - but not nearly enough - for lyme, not by a long shot.
While well-meaning, just as with many MDs, most NDs are just not educated enough about the serious and complex nature of lyme and co. It takes someone who has a great deal of specific education in this area and knows the science behind lyme, etc.
Having read ILADS' research, attending conferences, getting to know other LL doctors, etc. all makes a big difference.
There are also several active support groups around the state. Contact this group to get connected to your options:
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Okay, I'm glad to see you at least got the name of the LLND in Tigard. Sorry that funds are tight. That's the reason I'm trying to figure this out on my own, too (after initial dx and consults). But I'm also very sensitive to most Rx, so I have go a different route.
You need to talk with Miguel with the OLDN. He is an expert on Kaiser. He's written many articles and papers regarding Kaiser and lyme. He knows all the names. You can find him through here:
[ 06-17-2010, 03:59 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
- One more thought. You had + band 41, a bite, and classic symptoms for lyme. However, you may have better success with a doctor if you also have a coinfection. Talk to MIGUEL about that regarding your insurance plan.
----------------------
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Search "Kaiser" - ``subject only'' - of the MEDICAL forum -any date - and you will find eleven threads from 2005 - 2009
Then, Searching the same in General Support forum, there are six different threads.
==========
Edited to add: I looked through those past threads and there was one hopeful post but there was no good news after one hopeful "extension" of one prescription, one time - from the Chicago area.
Several posts were that their Kaiser doctors would not adequately address lyme. The links below are more helpful. -
[ 06-17-2010, 07:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Lyme disease is a bacterial infection spread by ticks. Antibiotics can treat Lyme disease.
If you do not treat Lyme disease, it can lead to problems with your skin, joints, heart, and nervous system. These problems can develop weeks, months, or even years after you get the infection.
Your doctor may prescribe antibiotics even if it is not yet certain that you have Lyme disease.
=====================
Kaiser does seem to know about other tick-borne infections:
This summary article is available to all users of our Web site. The complete article is only available to Kaiser Permanente members who have signed on to the site.
Are you a Kaiser Permanente member? Read the complete article. (Clink on link at site).
=======================
[poster's note here, not from the website]
At the bottom of that last page, in the RESOURCES list, they show ties to the Lyme Disease FOUNDATION. This is the IDSA's group, the group that prevents proper treatment and denies chronic lyme even exists.
[On the other hand - just FYI - ILADS's main site is www.ilads.org and The Lyme Disease ASSOCIATION is the group that works with them.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- The reality seems closer to experiences described below from The KAISER PAPERS --NOT Kaiser's official site, but a "public service" site - from patients' experiences.
There is always hope that things are changing but be prepared for what is described here.
It appears that they require a positive ELISA, followed by a CDC positive from THEIR OWN Lab. --------------------
- HMO abuse of Lyme disease surveillance case definition
Excerpt from letter 2003:
. . . There appears to be a strong bias against diagnosis for Lyme disease at this institution. To summarize;
* My primary care physician absolutely refused to see me when I told him I suspected I had Lyme disease.
* In issuing his denial, the infectious disease clinician I saw lied to me and lied about me on my medical report. Differential diagnosis was refused.
* The neurologist who tried to help me was not allowed to bypass the CDC ELISA surveillance requirement and order the Western Blot through Kaiser's contracted laboratory.
* The presence of five bands on Western Blot IgG (paid by me) was dismissed as evidence of Lyme disease. CDC/NIH diagnostic recommendations were ignored.
* After all of the ongoing clinical and serologic evidence and positive response to antibiotic treatment, the Chief of Infectious Diseases at this facility suggested that my episode of Lyme disease may have been self-limiting. He claimed he could not find my Western Blot IgG.
* My complaints were dismissed without explanation. CDC positive results on Western Blot IgM were ignored.
How to deal with Lyme and other tick borne infections if you have Kaiser health insurance.
Excerpts:
. . . Most of the many Kaiser Lyme disease victims who have contacted us through the Kaiser Papers these past few years want to know how to obtain treatment for Lyme disease. Virtually all of these members have chronic Lyme disease, the late-stage persistent form of the disease. . . .
. . . For those with chronic Lyme disease, which comprise 100% of the Kaiser members who have contacted us, help from Kaiser is virtually impossible.
Kaiser physicians who diagnose and treat the chronic form of this disease are subject to reprimand. These patients are usually assigned to infectious disease specialists who will normally refuse diagnosis.
To our knowledge, only one chronic Lyme patient who has contacted us in the past three years has received a diagnosis of Lyme disease.
This patient was given 30 days of antibiotics, told she was cured, and informed that any future symptoms she has are not due to Lyme disease. The patient continues with Kaiser and continues to be very ill. . . . (end quote) -
[ 06-17-2010, 10:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Now, don't give up. Get current details and explore all your options by talking with people from OLDN.
Whatever you do, be sure to AVOID STEROIDS -- and AVOID LUMBAR PUNCTURE (spinal tap).
On, not sure if you are aware of this but if you consume any aspartame or MSG, those are both highly toxic to your nervous system. Google for all the names they both hide under.
The SELF-CARE details from both sources below are very important - even now - and even if you take other paths.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
======================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
Wow, all of you are awesome! My husband and I will look over all the info and be ready for my KP appointment next week. ~Namaste
Posts: 7 | From Portland, Oregon | Registered: May 2010
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Keebler
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posted
- Be sure to come back and check your PMs - private messages. I'm getting some replies from the other site and am forwarding those to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Good luck with Kaiser. They diagnosed me with "conversion disorder" despite my Kaiser doctor removing the engorged tick and my subsequently developing the bull's-eye rash.
They told any doctor I consulted with outside "the network" to regard me as a "psychiatric case" and to not listen to anything I had to say.
They are evil beyond belief. I blame them, and soley THEM, for my going chronic. They never considered co-infections, either.
Kaiser caused me untold misery, both physical and emotional. I will never, ever forgive them.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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