posted
My 14 year old nephew has been suffering from intermittent bouts of stomach aches, headaches and knee soreness on and off for a year or two now.
He had a very serious case of LD when he was 5 years old, complete with a bulls eye rash, that was treated with a 3 week dose of Amoxicillin, and he was presumably cleared of the disease.
Is it possible that some of the Lyme bacteria from his original infection was not killed off completely, and has been dormant in his body all these years, causing these lingering symptoms?
He has an appointment with the Doctor next week, and my sister is going to insist on having a WB test done on him.
Just curious if anyone heard of anything like this with LD recurrences.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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adamm
Unregistered
posted
It is still Lyme--no question. There's not been one study demonstrating that the disseminated disease can be cured, and a persistent symptom-free state is generally only attained with very long courses of treatment. For some reason, however, corrupt public health officers have been misinforming the medical community about the disease since its emergence and persecuting the doctors who treat it properly. For the real scoop on Lyme, you should check out these links:
I see you're really on your game this morning. Thanks for helping these folks out.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hi Donald, it's very likely that he's still suffering from Lyme and needs further treatment.
3 weeks of Amoxi is NOT enough to eradicate Lyme, but it was enough to put in "remission" or "dormant" as you said. These recurrences are VERY common.
I'm assuming that your sister is taking him to a regular doctor? I can almost gaurantee you that a regular doctor is going to say that's not possible - that he was cured years ago and that Lyme doesn't "come back". Nothing could be further from the truth.
Also, about the western blot. Lyme tests are really inaccurate. The problem is that only test for the antibodies your body produces against the Lyme, rather than the Lyme bacteria itself.
If someone has had a longstanding infection their body has probably stopped making antibodies, so the test comes up negative.
You guys need to find a LLMD (Lyme Literate Medical Doctor) Dr. Jones is a well known and excellent pediatric Lyme Dr. but he has quite a long waiting list. Go to the "Seeking a Doctor" section here and post asking for a Lyme doctor in your area.
This is the only doctor that's going to take your nephew's symptoms and history seriously and that will treat based on current symptoms and prior infection.
Good luck and keep us posted!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, it is entirely possible and happens all the time unfortunately.
Ask for a test from IgeneX rather than getting one from other labs. They specialize in Tick-Borne infections and they are much better at finding chronic lyme than other labs because they test for more bands and more than one strain or borrelia.
I'm pasting a response to another message that I posted this morning so as not to have to re-type the whole message here.
Lyme testing is notoriously inadequate at detecting persistent infection. LabCorp is not a great lab for lyme testing, particularly for chronic lyme disease. Most LLMD's (Lyme Literate Medical Doctors) use IgeneX. They specialize in testing Tick-Borne Infections.
This is the website of ILAD's. International Lyme And Associated Disease. You can read papers written by medical doctors who treat Chronic Lyme Disease there. www.ilads.org
Please find an ILAD doctor so that you can be properly evaluated for lyme disease and co-infections. Ticks often pass more than just borrelia (the bacteria that causes lyme disease). Most doctor's do not check for co-infections and treatment for a number of them is different than treatment for lyme disease itself.
There is a medical battle going on regarding the proper diagnosis and treatment of lyme disease. The IDSA (Infectious Disease Society of America) do not believe in persistent infection despite 70+ medical studies that prove otherwise. They were investigated and found to have a flawed process in choosing the members who wrote the medical guidelines that many doctors use to treat lyme disease. They were shown to have numerous conflicts of interest.
Many lyme victims have been told that they are cured with short term abx. If symptoms peristed, they are told that they have Chronic Fatigue syndrome, Fibromyalgia, MS and a slew of other illnesses with no known cause.
For detailed information about the history, politics and science of chronic lyme disease, read the book "Cure Unknown". Written by a respected science journalist who is currently senior editor for Discover Magazine. It is a jaw dropper and will make it clear that many people are being told exactly the same thing that you have been told at great risk to their health.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for all the helpful posts, everyone-
My sister is taking my Nephew to her GP next week to hopefully get a WB done on him-if anything comes up positive, she plans to take him to an LLMD she has started seeing out near Lancaster.
She and I agree that his LD is probably back, and has been in hiding all these years. I feel bad for her-she is very sick herself with LD, and is in full Herx mode right now from all the meds she's on.
Last thing she needs now is for her son to be sick again with this disease too-I wish I wasn't 2+ hours away from her, because she could really use some help. The herxing is so bad for her now she feels like she's dying.
This disease also has it's grips on my Hubby-who knows, maybe I'm next.
Thanks again for all the helpful replies, I'll keep everyone updated.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry to hear that so many in your family have lyme disease.
I wouldn't count on the blood tests since seronegative lyme disease is not unusual in chronic lyme disease. The very best thing that can happen for your nephew is for him to see an LLMD for evaluation. Let an expert decide if he needs treatment.
I was 5 years old when I got infected. I had untreated lyme disease for decades and became debilitated with it for decades. It has taken 3 years of aggressive treatment to pull me back from the brink and I am far from well still. I don't know if I'll ever be well again because some of the damage may be permenant.
Please make sure your nephew gets to someone who has the training to evaluate him properly. A GP is no substitute for an LLMD.
Wishing your family the best and hoping that you never have to deal with this for yourself! Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
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