Just pulled a tick off on Friday. Can I email someone a pic of the bite? Looks odd. Thanks, Jeff
Posted by adamm (Member # 11910) on :
Any reaction to a tick bite is an indication to treat with 400 mg doxycycline/day for 3 months. The Lyme rash needn't be a bullseye (in fact, it needn't be there at all), and even if you don't get Lyme, there are about a hundred other infections that you can get that can't be tested for.
Unfortunately, the powers that be have been lying about this since Lyme emerged in the 70's, and as a result, 99.9 percent of docs have it all wrong when it comes to tick-borne disease. You should check out lyme-info.net, lymecryme.com. lyme-rage.info, ilads.org, and underourskin.com, take some of the literature on those sites to your doc, and then make an appt with a provider known by patients to be LYme-literate.
Good luck, Adam
Good luck
Posted by bettyg (Member # 6147) on :
welcome jefferson; glad you found us.
are you able to post it here on the board? directions for doing that are shown in COMPUTER QUESTIONS forum; just click FORUM HOME to find computer questions area.
also look on left hand side in leaf area ...PICTURES; you might see one similar to yours ok!
do you have a BULLS-EYE rash? many of us do not; we also have never seen ticks on us nor embedded.
adam is right; you need 3 months of doxycycline!!
infectious drs. give from 1 pill up to 3 wks MAX!! they UNDERTREAT & THEN YOU HAVE CHRONIC LYME!
get your primary dr. to prescribe you and keep after them to get 3 months worth. you want to have TWO MONTHS OF NO SYMPTOMS before you quit taking antibiotics.
YOU CAN BE CURED; rest of us hope to get into remission!!
print of dr. burrascano's lyme guidelines & take them to drs. office with you. GET ON ABX TODAY!!! times a wasting; spirochete travel fast throughout your body.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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. ==========================
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." ===========
ILADS 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. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
Posted by Keebler (Member # 12673) on :
-
P.S. Oh, sorry, BettyG posted as I was composing. So, I know we overlap in some links. Still, both sets offer some things the same; some differences.
You might copy out for referral as you go along. I see from your profile that you work with a Nature Conservancy. Perhaps this will be a good start to a lecture series. And you will be able to say that since you addressed it early and aggressively, that you did very well (I hope).
See the menu, lower left: PHOTOS of RASH for lyme, bartonella and other TBD (Tick-Borne DIsease).
=================
Take photos of the rash from different angles over time.
Put a clean coin or ruler near the bit for dimension clarity.
Put the date, from a newspaper or magazine in the photo, and,
be sure to show your face AND the rash in at least one photo - so it's identified as being on you.
You may need these photos later when the rash fades. Never give away the last set of photos. Keep those in your personal medical file.
========
Go to a doctor TODAY. Tell them about the tick and show them the rash and ask for doxycycline. Read about tests below. You do not need a test for lyme if the rash is a bulls eye. There are other kinds of rashes that are not bulls eyes. It need not match a photo. It needs to be taken seriously but be prepared if you are laughed out of the doctor's office and given one pill.
You need more but will be lucky to get enough for two weeks. If this is lyme you need to be treated for at least 30 weeks, according to one expert.
And tests now for lyme will not work. Your body has not built up the antibodies. Besides, most doctors order the wrong tests from the wrong labs that don't test all the bands in a Western Blot.
Now, you may not have lyme, but ANY rash after a bite is highly suspect and it's vital to get antibiotics just in case.
Then, find a LLMD. You need to get there before the meds from your doctor today run out. (Allicin capsules might help in the interim).
You will need to be assessed for lyme in person - and also considered for all the other tick-borne infections, too. If you address this aggressively right at first, you have an excellent chance of it not getting worse.
All this will help you see why that is important.
========
-
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:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
-
[ 05-04-2009, 04:05 PM: Message edited by: Keebler ]
Posted by Jefferson Armistead (Member # 20203) on :
Thanks to all of you! I have an appointment today at 3. I had no idea this thing was this huge. I'll take the pics later and post. I've got to go. Thanks, Jeff
Posted by cjnelson (Member # 12928) on :
Jeff
I read in another post that you do have the bulls eye rash, if that is correct you may well test negative for Bb, the borrelia that is causitive agent for Lyme because you are in the southern states...it might well be borrelia lonestari strain and that will not test out on the ELISA or Western Blot from your family physician.
Point being, even if you get a negative test you may still be infected. Please go by your clinical signs and if you get a no answer for treatment then look else where!!! There is a way to get help!
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.