posted
Hello, I've been checking in on this website for the past few years with the suspision that I've had lyme disease, but couldn't get a definitive diagnosis until today... About 8 years ago, while pregnant with my daughter, I was bit by a tick and treated for a month based on a red, blistering rash. Since then, I've never felt right. I've had panic attacks, gi symptoms, back pain, brain fog, and numerous tests and the doctors kept telling me it was anxiety. I recently found a new family doctor who did a thorough exam and a western blot test last week and it finally came back positive-my prayers have finally been answered! I never thought I'd be happy to have a positive test, but I am relieved to know that it's not all in my head. Here's the question...my doctor wants to treat me with Doxycycline for a month and then re check my lyme test after my course of antibiotics. Will one month of antibiotics really knock out the lyme if I've had it for almost 8 years? He's unsure if the test shows new exposure or if it came back positive because I was exposed 8 years ago. Thank you for your advice!
Posts: 69 | From PA | Registered: Aug 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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KLSS,
So that more people can read your post and reply, I'm breaking up the text (many here have eye problems and the extra white space also helps with remembering what we read).
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Hello,
I've been checking in on this website for the past few years with the suspision that I've had lyme disease, but couldn't get a definitive diagnosis until today...
About 8 years ago, while pregnant with my daughter, I was bit by a tick and treated for a month based on a red, blistering rash.
Since then, I've never felt right. I've had panic attacks, gi symptoms, back pain, brain fog, and numerous tests and the doctors kept telling me it was anxiety.
I recently found a new family doctor who did a thorough exam and a western blot test last week and it finally came back positive-my prayers have finally been answered!
I never thought I'd be happy to have a positive test, but I am relieved to know that it's not all in my head.
Here's the question...my doctor wants to treat me with Doxycycline for a month and then re check my lyme test after my course of antibiotics.
Will one month of antibiotics really knock out the lyme if I've had it for almost 8 years?
He's unsure if the test shows new exposure or if it came back positive because I was exposed 8 years ago.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Rechecking after a month is useless. Lyme just does not work that way.
First, One month of just one drug (when a combination is required) will do very little for disseminated lyme.
Second, lyme is not going to just go away in a month. It can change forms, and it simply cannot be tested along the way, as can many other infections.
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I do give your doctor credit for running the Western Blot and for at least a month of treatment. But you will likely need a year or more of combination treatment AND you need to be assessed for other tick-borne infections.
I would not drop this doctor totally, but he's in the infant stages of understanding this.
Lyme cannot be tested in a month to see how you are doing as it just can't be tested that way as other infections. Even a new case is minimum 30 weeks' treatment, according to some experts.
The life-cycle, stages, forms and defenses of the spirochete need to be understood. If a doctor truly understands all that, he would never treat you with one drug for a month and retest.
Also, you need to be taking a medicine to cover the cyst form of lyme. Doxy is not enough for that.
Hopefully, you can find a LLMD for yourself AND for your daughter as lyme can be passed on in womb. You daughter may have gotten lucky but, since you were infected when pregnant, she should be evaluated.
Perhaps, your GP can work along with a LLMD. It is important to try to nurture your GP's interest and I hope your careful words will help you keep him as he learns more and wants to work with a LLMD who has much experience.
===========================
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
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).
. . .
" . . .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.
-===
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
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:
posted
You are very lucky to have found a doctor who tested you, and you are even luckier that the test he used came out positive as most "normal" Lyme tests are not very accurate.
Now I would find a doctor who specializes in Lyme treatment. If you had cancer, you would find a doctor who treats cancer. You have Lyme, you need a doctor who knows about treating Lyme.
It's unlikely that one month of doxy will be enough. That is the IDSA standard. Go to www.underourskin.com and watch the trailer to see why those guidelines are flawed and why it took you so long to get diagnosed.
Good luck.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Unfortunately, my husband is a pessimist and after all the testing and lyme docs we've encountered in the last seven years, his response when I called to tell him about my test today was, "won't you always come up positive since you've been exposed?"
He thinks it's all a bunch of mumbo jumbo, but I've known all along that something hasn't been right and followed my instincts.
So, is it possible that I don't have lyme and I'm just testing positive or do I need to find a good LLMD take my hubby for some schooling???
Thanks again for listening...
Posts: 69 | From PA | Registered: Aug 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Q: " . . .is it possible that I don't have lyme and I'm just testing positive . . ."
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Next question: Do you feel good?
Can you tend to all the responsibilities in your life and still have reasonable energy for taking care of yourself, too . . . and for being present in relationships. Can you read a book a week, say?
Can you also participate in one or two outside activities per week?
Do you have energy to exercise even moderately - or mildly - for 20 minutes each day (without that "run over by a truck pay-back")?
Is your body relatively comfortable, regarding your head . . . neck . . . muscles, etc.
Do you sleep well and awaken refreshed?
Is your mood fairly stable, and does your brain function as you need it to for your responsibilities and also enough to take you where you want/need to go with career or other chosen interests?
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If you answer yes to all that, then you may not have lyme.
If you answer no to some of those questions (as I suspect since you already told us in your first post that you have not been well for 8 years - but your husband must have missed that part, eh?) . . .
Well, considering that you had the bite, the rash and you say you were UNDER treated with an inadequate drug protocol and have not felt well since, well, in all respect, you need to listen to your own common sense as you learn more about this.
Your husband is not doing the research on this, you are. You are now more expert than he is. I'd trust the person who has studied this. And then go find an expert who has treated thousands of other patients. At least get evaluated. See what an ILADS-member LLMD has to say.
In the meantime, get the film "Under our Skin" - watch it together and then ask him if he will care for you and all your needs if you become as the woman in the first part of that film.
Even if he says "yes" tell him that you have no intention of taking a chance at becoming that sick and that you need to explore this further with an expert.
All matter of marriage aside, this is YOUR body. It is your responsibility to yourself to do what you need, regardless of any one else's opinion, even that of your husband. Now, it may be that he worries or can't afford treatment - but if he for one second thinks he knows more about this than you, he is way off base.
Claim your power to seek out expert medical consultation. There may be several ways to address this but you need to know what is going on. This is no time for guessing games.
posted
Thank you very much for your insight. I would have to answer no to the majority of the questions that you asked and my quality of life has decreased over the years, but I had just written it off to getting older and my anxiety. (After being told that over and over again, you begin to believe it)
To know that the majority of the symptoms that I've been experiencing could be caused by lyme disease gives me hope that I could improve my life and I'm willing to learn more about the disease if it helps me to become a better wife and mother in the long run.
Thank you for the wonderful advice and support.
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