posted
My wife is still having a hard time doing the research needed. I'm trying to help as much as I can. She did one month of oral dox. and then nearly a month of picc line abx. (two different types). The ID doc said it must not be lyme. I'm reading the lyme solution and surfing this site as much as I can. Please help.
Posts: 13 | From Ohio | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to you both!
Let me first say I am sorry to hear you are having such problems. I hope your wife feels better soon. It is sweet of you to try to help her. We will do what we can to help.
To answer your question...
Testing .. on a good day with the best of circumstances... misses 40-75-90% of the people with Lyme.. depending on the tests used.
Take antibiotics and the results can be even more skewed.
Don't listen to negative tests. Ever.
There is NO test that can state if Lyme is gone from the body or not.
You said ... "The ID doc said it must not be lyme."
Of course he will say that. If he didn't, I'd be shocked. (I am laughing at HIM by the way.. not you!) That is a standard answer.
Heck, a few of those duds actually took old reports of people with Lyme (positive tests, rash, etc), and they officially undiagnosed them and claimed they never had Lyme.
WITHOUT EVER SEEING THE PATIENTS!!!
Told about bold as brass!!! Anyhow...
Heaven forbid your doctors "cost-effective treatment" combined with his biased IDSA Lyme disease guidelines would actually or magically cure anyone. They usually don't... therefore.... many of us have chronic Lyme.
And... he doesn't want to end up being sued... so he will say that to protect his tail feathers.. the duck that he is.
Now.. has he even tested your wife for coinfections? Or considered them in his diagnostic approach?
If you consult with him in the future... ask this question.
"How do you treat the cyst forms of Lyme disease?"
He may get angry, or tell you to stay off the internet (stay stupid is what he means by that)... and/or will fumble and bumble, change the topic... etc.
My bet is he won't know the answer.
FYI- Infectious Disease doctors recently wrote a letter to Congress stating there is no such thing as chronic Lyme disease.
Knowing that.. if you want to stick with him, I will pray for you.
If you'd prefer getting decent help... let us know and folks will try to find a decent doctor for your wife to see.
And you are doing good to learn all you can. Good for you!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Your wife needs to see another doctor. The ID doctor is not correct about this not being able to be lyme or she'd be all well by now.
Two month's treatment is not enough. Not by a long shot.
Has she been advised on liver support to help detox the lyme toxins? Lyme is one of the most toxic infections known to man and the liver needs help with that. In addition, liver support can help protect the liver during abx (antibiotic) treatment.
In addition, as lyme is extremely hard on the endocrine system, addrenal support is usually advised to decrease harmful rushes of cortisol from the body's reaction to the stress of infection.
And, was she tested - and physically assessed - for coinfections? There are other tick-borne infections and each is treated differently.
I'm sorry that the two of you are in the situation.
I'll come back in a little while and post some links to document what I've said.
Mostly, in answer to your main question - as Tincup says: "There is NO test that can state if Lyme is gone from the body or not."
Your wife needs to find an ILADS educated LLMD. Those terms will soon be explained.
I know this must be very frightening. This can get better - but you need to find an expert doctor to do so. Most ID doctors are simply not educated in this area. Sad but true.
I hope you find a good doctor soon. Links below may be overwhelming but I hope offer enough for you to find your way.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information. Please be sure to read the entire article before proceeding.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
- Cont'd at link above.
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[ 27. December 2008, 08:16 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
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Backing up a bit, did your wife every have a bulls eye rash? Not every one does and lyme rashes are not always bulls eyes but, a bulls eye is always lyme.
No test is needed then (although the IDSA and the CDC seem to think so and make it much harder).
I see in your profile that you are a pastor. If you have no LLMD near you, might someone from your church in another town be able to help in some ways?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Correction made in set above to include the most recent Dr. B. Treatment Guidelines (with thanks to Scott for finding this set and to DebAz for posting the link):
I asked a similar question of my llmd at the last appointment. He is not an ID doc, but rather is integrative internal medicine and follows treatment philosophies of ILADS.
I originally had a Western Blot done through Igenex in Jan 07 and based on the results and clinical symptoms, my doc said I have an equivocal diagnosis of Lyme. At that time he believed my immune system was so compromised I was not producing antibodies at a high enough level to be considered positive by CDC standards.
I have been on multiple antibiotics since Feb. 07 for both LD and coinfections which are commonly found in those who have Lyme. A couple of weeks ago the doc proposed doing another Western Blot through Igenex to see if the antibody levels have changed.
When I questioned if it wouldn't just be the same as before, his reply was that sometimes you become more positive after starting treatment, once the infection is addressed and the immune system is supported and starts functioning better.
We also re-tested for Babesia although being clearly positive before in order to check for changes in the titer level. Basically he's looking for clues on how well treatment is working--I still have a lot of symptoms but am better in some ways.
It is my understanding where you have the tests done can influence the results. My doc uses Igenex due to trusting their work. And after the reading I've done and good results others have gotten with my doc, I trust him.
Thank you for helping your wife do the research. There was a time I was too sick to read and my husband and family did the work for me. It has helped me gather information that has been beneficial in managing symptoms, ask intelligent questions during doctor appointments, etc.
Lymenet is good for support, links to other helpful resources, and hearing other personal experiences. So welcome, and keep asking questions.
Grannie
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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