posted
I was diagnosed with Lyme about 6 weeks ago. I was put on a 4-week course of Doxycycline 100mg 2x daily. I had no symptoms at the start, as the infection was caught early by chance - my Doc wanted to test during my yearly check-up as I live in a rural area known for high Lyme occurances (Wonderful Doc!). My test indicated that I was in the initial stage of Lyme.
One week into treatment, I began to get a stiff/sore neck and moderate/bad headaches. I wasn't running a fever and felt OK otherwise, so I let it go a week or so. My Doc checked me out and suggested that it might be muscular, since I lift weights as part of my routine work out.
Now that I am one week past my course of treatment, the headaches are better, but still there on a daily basis, as is a now mild sore neck and a slight bumpy rash on my forehead.
My questions: - Are my persisting symptoms likely to be a lingering reaction to the medicine or an indication that Lyme is still present?
- The current suggetion is to wait to see if typical Lyme symptoms emerge over time. Is there any value in retesting for Lyme?
Thanks!
Posts: 3 | From USA | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Welcome, Billy. So sorry you've had to find your way here.
---
You asked:
1. reaction to the medicine (Yes, but that is not all that is involved) or
2. an indication that Lyme is still present? (Most likely. It takes 30 weeks of treatment, at least, according to one lyme expert linked below.)
----------
First, HOW early did treatment begin? Still, looks like you need to find a doctor who is more educated in lyme and other tick borne infections - a doctor who is a member of ILADS and a LLMD. that will be explained below.
Now, you say you have a wonderful doctor and that is great. Most doctors would not even know enough to offer to check it out. However, your doctor may just not have been able to know there is much more to this.
Most state medical boards work very hard at hiding the truth, even from doctors.
Four weeks of just one antibiotic is not enough, sorry.
Retesting lyme will not be of help. You will need to be tested (or clinically assessed) for other tick-borne disease (TBD), though.
I will be back with some links for for you. -
[ 09-30-2009, 03:28 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
- Documentary
Really, after posting for a doctor, if you order this today, it will go a very long way into explaining a lot about the political climate and the importance of a knowledgeable doctor. This is an excellent film.
This explains WHY you need an ILADS doctor (now, it would be fantastic if your doctor can work with you for backup and support but you need a real expert):
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 this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-
[ 09-30-2009, 03:21 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
- TESTING
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 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:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did your doctor tell you to take a good probiotic with the doxycycline? That will help prevent a systemic candida (yeast) infection. The slight bumpy rash on my forehead might be that.
PROBIOTICS are essential. A non-sugared yogurt can help (but avoid any milk products near the time of the RX). But a supplement is more powerful.
Any good nutrition store can get you started. Jarrow is a good brand. ---
As for the neck symptoms, that often comes with lyme, even - or especially - during treatment. Feeling worse when treating for lyme is often called the Herxheimer response, or herx.
Some LLMDs suggest certain supplements to help with that, particularly liver support and Milk Thistle is the top one suggested. Lyme - and abx - can harm the liver. Protection is very important and Milk Thistle will become your new best friend. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- the testimony from the IDSA Lyme Guideline review panel, July 30, 2009 - Some ILADS doctors presented research in hopes of changing the IDSA guidelines.
- The current suggetion is to wait to see if typical Lyme symptoms emerge over time. Is there any value in retesting for Lyme?
Thanks!
Keebler gives some great information...definitely read it...
A "wait & see" attitude with Lyme and any tick-borne illness can easily be a regrettable game plan.
I would not wait for symptoms to progress. The wait for any LLMD is usually a bit long in any event. So there will probably more waiting than most patients are comfortable with.
So, my suggestion: make a LLMD appointment now.
As Keebler iterated: There is no value in re-testing. Tests are notoriously inaccurate with only a measley 45% accuracy rate.
You very well could have co-infections, other parasites that ticks carry. This could be part of your symptoms picture. Keebler suggests testing for co-infections, although tests for those are inaccurate as well. A LLMD will probably run them anyway.
Your best bet is to post in "Seeking a Doctor" forum, if you haven't already, to find yourself a LLMD closest to you. Post the area/state in the subject line.
Best of luck.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry for posting so much, really. You happen to the the unfortunate one whose puzzle I've taken on for my brain exercise of the day. ---------
Hey, would your wonderful doctor be interested in attending the upcoming ILADS conference? If so, their are some stipends and discounts - contact ILADS for that.
You can see more about that conference at www.ilads.org
ILADS Lyme Disease Conference
October 24-25, 2009 Gaylord National Resort Washington, D.C
--------
Now, if your doctor can't attend but is interested in learning more, ILADS has a training program where an ILADS LLMD will mentor.
To be very clear as 22dreams says, you need good treatment now. You can't afford to wait for your doctor to learn more as the learning curve is very steep and you need someone with experience.
While you wait to get in to see a LLMD, you might ask their office what they suggest by way of reading, supplements, or self care.
In additions to probitics and some supplement on Burranscano's list, I'd ask about taking Allicin & or Olive Leaf Extract while you wait.
Good luck - and take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Get yourself a LLMD and get tested for co-infections. My wife and I just started on this Lyme journey not too long ago. We knew she was + for Lyme, but her bloodwork just came back from the LLMD and she is + for Babesia, Bartonella and Erchilosis. These require more than just Doxy.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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posted
Welcome billy! Glad you found us. It's a great site!!
I would definitely get checked out by Igenex lab for coinfections. Otherwise, no need to get tested again for Lyme.
Find an LLMD soon and continue treatment until all symptoms are GONE.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
My forhead felt like I had bb's and itchy. Since treatment it is going away. Your will get worse before you get better is a common saying with Lyme docs. I would not wait till you are severe neuro to treat if suspected.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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