posted
Hi all. I was just wondering if anyone knows if you can be tested for lymes many years later, following a suspected tick bite? I had a rash many years ago and have been tested for Lyme, but it came out negative, however I have had and continue to have many symptoms. Do you know if treatment would be effective many years later and if there is now an accurate test? I appreciate any info you can give me. Thanks.
Posts: 3 | From nc, ny | Registered: Sep 2009
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bettyg
Unregistered
posted
dg, welcome
no 100% accurate test, but the best available is IGENEX lab in calif. check the bottom of my welcome letter to you for more info in getting tested for lyme and co-infections; other illnesses the ticks can carry!
look thru the symptoms lists in below link also : hugs
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
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. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
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):
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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Most of us here were sick for many years before being diagnosed with Lyme. The tests are very unreliable. A person can be quite sick with Lyme and co-infections and test negative to everything.
You should also be aware that ticks usually carry more than one illness (co-infections). You should review the symptom list above to get an idea of what you may have. These require different medications than Lyme.
Don't be surprised if you see several drs. that insist that you do not have Lyme because your tests are negative. Most drs. are uneducated about Lyme and the unreliablity of testing. You may want to look for what's called an LLMD (Lyme Literate M.D.). A few patients have found other types of drs. that are not LLMDs (including myself), but it's rare.
Feel free to send me a personal message. The information in the beginning is overwelming.
Good luck, Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
dg, you can be tested many years after the tick bite. If you got lyme from the bite, it will not go away, so the number of years that have passed does not matter.
Treatment can be effective even if years have passed since you got bitten. In my case, I went undiagnosed for 10 years. Then, I was tested (tested positive) and then I was treated.
It has been 4 1/2 years since I completed my lyme treatment. I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I also had 2 lyme coinfections--babesiosis and bartonella.
I suggest you post in Seeking a Doctor and tell the states you are willing to go to in order to see a good lyme doctor. Then, someone will send you the names of lyme doctors in those states.
To get your education on lyme disease, I suggest you read the Dr. Joseph Burrascano lyme disease treatment guidelines found here:
Here is a little of what it says about the unreliability of the lyme tests:
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment. Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy.." (p. 7)
So, it may take a trial course of antibiotics to finally determine if you have lyme disease or not.
The doc is the key to getting rid of this disease, my friend. I can't emphasize that enough. Until I got to a top notch lyme doc, I did not get rid of my diseases. I wasted 2 years in treatment, taking antibiotics the entire time.
I suggest to everyone that they go to a doc who follows the Burrascano guidelines. Ask if the doc follows Burrascano when you call to make the appt. I and my friends and acquaintances have all gotten rid of this disease by going to Burrascano type doctors.
Burrascano is the lyme guru in the U.S. and the world. He wrote his guidelines for other doctors to learn how to successfully treat lyme disease and its coinfections.
They are not an easy read, but they will teach you what good lyme treatment looks like.
Wish you the best.
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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. 
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