posted
I was wondering if it was normal to get tingling at the same time that you have a bullseye rash in the same leg where the rash is. I am also getting some slight muscle spasms in the leg and a little bit of pain when I walk. It seems as though, from what I've read, that it's too soon for these symptoms to be occurring and I was wondering maybe if it isn't Lymes at all but something else. Also, another wierd phenomena is that the bullseye rash isn't growing or going away. It is just staying the same. It did grow in the beginning, but it stopped after like 2 weeks. To make things more complicated: When the rash was the size of a mole, I shaved over it and there was a scab there for like a week. That may have something to do with the bullseye appearance...or maybe not, I don't know. Other symptoms I've noticed have been the normal flu-like symptoms such as slight dizziness, headache, exhaustion, chills, and muscle stiffness.These have almost gone away now. I have had the rash for about a month. I am on antibiotics right now and will be for the next 2 weeks. If it is Lymes, is this the right treatment?
-------------------- -Joy Posts: 2 | From New Jersey | Registered: Feb 2009
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adamm
Unregistered
posted
EMERGENCY!
The rash means that you have Lyme. It's that simple. Even with twenty negative tests (the best only have around 60% sensitivity), you should still know that you need to treat. The fact that your doc (who I presume is your GP or local ID specialist) does not know this means he cannot treat you effectively. Unfortunately this is par for the course, as, for reasons nobody's fully figured out yet, corrupt public health authorities (CDC, NIH, PHS, IDSA, DOD) have been misinforming the medical community about Lyme since it's emergence. So it is now up to you to save yourself.
3 weeks of treatment is guaranteed to fail! Most educated docs say that at least 3 months beyond the resolution of all symptoms is necessary to permanently suppress the infection. Please educate yourself about what your up against, set up an appointment with a Lyme patient-recommended doc (who'll probably be an ILADS member), and, if he can't see you by the time your prescription runs . I waited six months, and now, at 19, am suffering cognitive deterioration that 14 months of treatment has done nothing to ameliorate. The fact that you're experiencing tingling means that the spirochete's already attacking your nervous system, so the clock is indeed ticking.
Also, I assume you're only on 200 mg of doxy/day. This is half of the dose that is required to kill the spirochete; in fact, my encephalitis set in while I was on 200 mg.
Here are some places to start learning about Lyme and the dozen-or-so infections that commonly accompany it in various combinations:
You are lucky to have a relatively high number of Lyme-literate MDs in your region, you find and call one as soon as possible. A search on the Lyme Disease Association's doctor referral database might prove helpful with that as well, though you should at least check out any name you get there with members of your nearest support group--I've gotten a few bum leads from that site.
Well should suffice for now, feel free to get in touch with me or anyone else here (shout-out to BettyG, Lymetoo, and TinCup) if you have any questions.
Good luck, you still have a chance to beat this thing now!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, you can have any sort of sensation at the rash site.
And, yes, this requires emergency care (or at least advice) but you will not likely find it from "regular" doctors and since you are on antibiotics, that should help - but with additional symptoms around the rash, that is of concern.
Yes, this IS most definitely lyme. No question. Absolutely.
The good news is that you will need no lyme testing. The rash is proof. However, you will needed testing for coinfection
==
PHOTOGRAPH RASH
Take good photos from several angles with a clean coin or ruler near the rash for perspective. Get a magazine with the date clearly on the front and put that next to rash in at least one photo.
You may need these photos later to prove you had the rash. If there is some way to show your face at all in another photo - with rash showing it is on YOU - that will be further proof that the rash was, indeed, on you and not from a file photo.
Take enough photos so that you can give away some to doctors along the way. Or -if on your computer - be sure to store a safe copy on a disc.
===
Two weeks abx (antibiotic) will not be enough, especially since this is the second appearance of the rash.
I am confused why you say this would be too early for a rash? You've already had the rash for two weeks.
While it usually takes a day or even up to a couple weeks after a bite, a rash can appear within minutes of a bite, contrary to some of the "regular" medical literature. I know of one doctor who saw this happen within 20 minutes of a bite.
And it can spread throughout the body very fast so the tingling and trouble walking are not uncommon - especially since you've had this two weeks already, and this signals the need for the best care possible.
---
When did you start the abx?
Was there mention of adding a second abx soon?
And - if the doctor who gave those to you saw that rash and did not educate you about lyme - and the fact that this is certainly the one unique lyme sign (flu-like stuff just really back that up)
well . . . your doctor did not tell you this is lyme? Did not offer you further education or test for common coinfections?
Please, like adamm said above, find a good LLMD.
I'll come back and post some educational materials and more links.
-------
Please be sure to tell us
what the abx is that you are on?
when you started it in relation to the appearance of the rash and
when you likely got bitten
and the dose you are on.
--
I'm glad you found this site as there is a wealth of information here.
Good luck to you.
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[ 02-02-2009, 12:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - (author 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.
==========================
Sadly, shows the state of treatment (and the new committee just formed is sorely lacking in expertise - we cannot expect help from the IDSA):
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
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Now, after glancing over all that - you need to find a LLMD ASAP - and tell their receptionist that you have a rash now - with tingling and flu-like stuff.
Tell them what abx you are on and when the Rx runs out.
(will the prescribing doctor give you more? You need to know that now in order to plan.)
==
I do not have it and don't have energy for research but, hopefully, someone has information on how you might treat the rash topically.
You might check out the LDA site - link to the left of this page.
Colloidal silver might be put on it but it's so watery it will not stay.
AVOID STEROIDS - even in creams - even in tiny amounts - as that will make it worse systemically.
-
Again, good luck. I hope you can move ahead on this now. LLMD appointments are usually scheduled far out but if you tell them about the rash they should offer some ideas for help.
========
If the flu-like stuff got worse with abx, that is likely what is called a herxheimer reaction (or a herx). When the lyme bacteria gets irritated, it spews off even more toxins than normal and the liver has a hard time with getting all that out of the body.
So, excellent self-care and liver support is vital (see Singleton's book and Burrascano's guidelines for suggestions).
Unfortunately, treatment for lyme is no walk in the park. But the only way out is through. Singleton's book is the best source for what can help make treatment easier.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Welcome Joy,
Document, document, document!
Take photos now to document this rash...and go to a physician to get a "physician-diagnosed" EM rash, one of the requirements for a CDC positive case.
You may have to go to several doctors before you have one that recognizes this rash. Before you leave the office, ask, what's the diagnosis? Get a copy of your doctor's notes from the office to be sure you were given the correct diagnosis.
Take some pics showing your face in the view. Take close ups. Take a few shots a day until the rash fades.
Include a ruler in the view to get an accurate size estimate. Write the date on your body beside the rash.
You may want to circle the outer ring of your rash with an ink pen. The expanding rash is a hallmark of this disease. Take another photo tomorrow if the rash gets larger.
These rashes can be different shapes, such as round or oval. They can be different sizes. One requirement for a CDC positive case is a rash at least 5 cm in diameter. That's why you put a ruler in your photos.
My photos were the deciding factor for the Public Health Department. They determined I was CDC positive based on my rash photos, in addition to my positive test results. They tend to think a positive test is rarely a true positive.
A CDC positive test result only means your case will be added to the official Lyme case count for your county and state. Most Lyme cases don't meet all the strict requirements for a CDC positive case, therefore, they are not included in the Lyme case counts.
The CDC estimates only 10% of cases of Lyme disease meet the strict case definition. The purpose of the CDC testing (2 teir test) is to track the spread of the disease across the US. Their job is not to diagnose the disease or to determine whether you should be treated.
A negative CDC test only means you don't meet the strict surveillance definition for the disease. A negative test tells you nothing. You can have a negative test and have an active case of Lyme disease.
Many people with Lyme disease get a false negative test result because the infection supresses your immune system.
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To make things more complicated: When the rash was the size of a mole, I shaved over it and there was a scab there for like a week. That may have something to do with the bullseye appearance...or maybe not, I don't know. Other symptoms I've noticed have been the normal flu-like symptoms such as slight dizziness, headache, exhaustion, chills, and muscle stiffness.These have almost gone away now. I have had the rash for about a month. I am on antibiotics right now and will be for the next 2 weeks. If it is Lymes, is this the right treatment?
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