posted
I went to my regular dr this morning due to another bladder infection that I can't seem to get rid of.
Currently I am also very achy, having lots of headaches and feel like I am in a fog. We talk about Lyme as she has treated me in the past and has been confused about my case.
She is saying that I can just go to an infectious disease dr and they will be able to help me the same.
An ID would be closer to me and probably more likey to be covered my insurance.
What is the difference??
Posts: 60 | From WI | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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In 99% of the cases, an ID doctor will NOT help if you have lyme. ID doctors, nearly always, follow the IDSA (explained belowJ).
This is very complex and has become a huge political issue keeping patients from getting treatment. Links below will help to explain that.
I'm not sure what treatment for lyme your current GP has given you - or what tests you had. What did the tests for coinfections determine? There are many types of TBD (tick-borne disease).
I don't want to scare you with all the info. below. I know this is hard. But, one step at a time and I hope you'll find health again.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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[Oh, no! I tested the link and this article has been removed from their web site. I have the full article in my computer file if you need it. I'm so sad to see it removed. I just left a msg. to find out why.]
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From the "Lyme War" article below:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
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.
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
posted
Thank you Keebler. I will need to take some time to read all the info.
I just started posting her a couple weeks ago. Six years ago I tested postive for Lyme. Was treated with doxy for 21 days.
In late summer 2007 I tested positive again (probably a relaspe or new bite, not sure). Again treated the same.
Then in spring 2008 another "relapse" again treated the same. And now I think it is starting again.
So I am not currently on taking any meds. My general dr recognizes that I need to see someone else and it is my choice.
I just wasn't sure what the differnce really was. Everything seems to be so two sided depending on who you talk to.
It is hard to really know who to believe and trust. I like my dr and want to take her advice but I also look here for answers as you are all dealing.
I am trying really hard to understand all of this. But it is so hard to say the least.
I think I will stick with my gut and go to one of the LLMD that was sent to me by some one on this site.
How often do you need to go once you start seeing a LLMD? I don't have any real close so that is a concern also.
Posts: 60 | From WI | Registered: Nov 2008
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adamm
Unregistered
posted
I'll send you the info of the LLMD's in our region. I have to go up once every few months.
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Keebler
Honored Contributor (25K+ posts)
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jlc,
I added something to the top of the links post above: the explanation of IDSA and ILADS and their differences (I pulled that from my file after discovering the link was void).
Your GP may not know about all this. She may actually be willing to work with you and a LLMD - say to run labs, monitor you, maybe even prescribe as per orders from a LLMD.
However, many doctors are pressured by their state medical boards to ignore lyme. The insurance companies pressure the doctors to ignore it. And the IDSA wants no discourse.
Your doctor may not be aware of any of this. If you share some of the literature, she may be very willing to help. However, if she is not, there may be various reasons. Depending upon those, you may still be able to work with her to varying degrees.
It seems that she truly sees you need more. I hope she will step up to the plate to help you in that process.
posted
From what I understand...A ID doc is going to go by CDC standards for treating Lyme. Wich is not aggressive enough to cure, or control Lyme.
Posts: 16 | From Ga | Registered: Jul 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
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Hi jlc,
ID doctors usually resist treating lyme long term. That is one reason why people relapse because they have been UNDER TREATED.
It would be very rare that an ID doctor would be knowledgeable in the treatment of lyme. However, you could ask the ID doctor what his protocol is in treating lyme.
And like others have said, they will usually follow the CDC guidelines, which at most you will get 21 days of doxy which is clearly not enough to treat. Most regular MD's and ID's refuse to even believe you have lyme.
My ID doctor told me I had a false positive. NOT!! I have been under treatment for almost 7 months and have come to almost a 95% recovery.
A lyme literate doctor is very educated in the treatment of lyme.
Attached are guidelines published by the top lyme doctor in the USA. Print this out for future reference.
posted
jlc, kick me a pm if you want a really good recommendation of a LLMD in Wisc.
As for your question, I think everyones hit it here already. Infectious disease...follows CDC protocols... LLMDs...take an aggressive approach.
IMHO...the difference is between having someone believe you and will treat you till you're better (the LLMD), vs the ID specialist who caters to the company line and only treats for a couple weeks...then figures whatever is ailing you is something or then lyme.
Posts: 514 | From . | Registered: Apr 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
One treats Lyme disease; one does not...or at least not effectively.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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In addition to lyme and other TBD, LLMDs know far more about other chronic stealth (hidden) infections. You may also be tested for Cpn & HHV-6.
Don't get me wrong, with your history and symptoms it is vital to see a lyme expert. However, there may be other things to consider as well.
A good LLMD understands that as well. LLMDs also know the most accurate labs to use and the timing of addressing any coinfections.
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