posted
My sixteen year old son is home on a medical leave of absence. Initially, I thought he had either been reinfected with Lyme Disease or has chronic Lyme Disease. Maybe some of you out there can answer some questions or offer guidance in where to turn next.
Questions: * What differentiates the diagnosis of early Lyme Disease versus chronic Lyme Disease? If Sunshine was initially infected in May, but not treated until 10 months later, would this be considered early or chronic Lyme Disease? * If Lyme is active in his system at this time, how long should it take for him to show improvement with antibiotics? * Given that the antigen test is not yet available, is there any other testing that I should request at this time? * Any other suggestions?
History of initial infection dates back to May 1997, when Sunshine developed a high fever and measles-like rash on his chest. Both the fever and rash disappeared in a few hours. In March 1998, he complained that his knee was sore, and several hours later it was hot to the touch and began swelling. Within 12 hours, he was hobbled. The knee was aspirated and the synovial fluid tested positive for Lyme on the ELISA test. He was treated with a 30 day course of antibiotics.
This past Christmas, he complained that his right knee was hurting, and that he had migrating pain in both knees over the past three months. He was tested for Lyme, and Quest Diagnostics results came back positive on ELISA, 10 out of 10 bands on the IgG Western Blot, and 2 out of 3 bands on the IgM Western Blot. He was not reactive on the 41 IgM band, which is considered the more sensitive band for Lyme.
He began experiencing fatigue around January 26, and then on January 28, he developed a sore throat and a high fever that lasted 3 days. He started taking Ceflin, 500 mg. twice daily, on January 29.
The school in Colorado sent him home on February 6, due to the fact that there is no one locally who has experience in treating the disease (Colorado has reported only 10 cases of Lyme to the CDC in 27 years!). We saw his pediatrician on February 9, and Sunshine's throat was still raw, with white covering his tonsils. His other complaints were fatigue, stiff neck, pain in his knees and occasional swelling, loss of appetite, lightheadedness and headaches. His doctor did not detect any damage in a physical examination of his knees, and thought it might be Patella Syndrome. Tests were run for mono. Mono, Epstein-Barr and CMV tests all came back negative. CBC, sed rate and thyroid tests all came back within normal limits.
With Sunshine having been on Ceflin for more than three weeks now, his doctor does not think it is Lyme. He saw no clinical signs of Lyme and considers that if it were Lyme, Sunshine should be showing improvement after being on antibiotics for this length of time. He believes it is some kind of virus.
The fatigue is great and is not improving. He is sleeping 12 hours a day, and any kind of physical activity tires him and increases his need for sleep and rest. As an aside, he will be seeing an orthopedic specialist on Wednesday.
Thanks for any info you may have to offer.
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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posted
I would get him to a LLMD, a Lyme Literate Medical Doctor, for proper treatment. If his WB was positive and he's showing symptoms, he's got it.
I've been on antibiotics for 5 weeks now and am showing little if any improvement. It takes much longer than that to get to chronic Lyme. My LLMD said it would take at least a year or two in my case, so three weeks is nothing.
It varies in how long it takes to see improvement.
The best thing to do is get to an LLMD. Treating Lyme is complicated as there can be coinfections and it can affect various bodily systems. The bacteria can change form to hide from the immune system and antibiotics. You really want someone who specializes in it to get your son healthy again.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Until there is an accurate test for lyme you won't get any mater of fact answers to your questions. With ALL the current tests, It's still a clinical diagnosis. A positive test would go a long way for diagnosis.
Posts: 789 | From CT, | Registered: Jun 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sixgoofykids Member # 11141 posted 26 February, 2007 02:57 PM -------------------------------------------------------------------------------- I would get him to a LLMD, a Lyme Literate Medical Doctor, for proper treatment. If his WB was positive and he's showing symptoms, he's got it.
I've been on antibiotics for 5 weeks now and am showing little if any improvement. It takes much longer than that to get to chronic Lyme. My LLMD said it would take at least a year or two in my case, so three weeks is nothing.
It varies in how long it takes to see improvement.
The best thing to do is get to an LLMD. Treating Lyme is complicated as there can be coinfections and it can affect various bodily systems. The bacteria can change form to hide from the immune system and antibiotics. You really want someone who specializes in it to get your son healthy again. -------------------------------------------------
Ditto I agree 100%.
hope your son can feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Please post in Seeking a Doctor and find an LLMD who can help.
If the symptoms are still there, then he still has Lyme. And I would say it's chronic, though I'm not a doctor!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
I agree with tutu. He has adocumented history of Lyme. The treatment was probably inadequate. He has a positive WB. He has classic symptoms.
You need to find someone who knows what to do and is willing to do it. Fortunately, ther are a number of excellent LLMDs in your region. Some people have to travel halfway across the country.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I agree with all above - get him to an LLMD. Please post on seeking a Dr and see if there's a support group in your area.
One more thing to note: Please be sure to have him on Acidophillus, as antibiotic treatment without it can lead to systemic yeast issues, the symptoms of which mimic many lyme symptoms.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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quote:Originally posted by AJM: The school in Colorado sent him home on February 6, due to the fact that there is no one locally who has experience in treating the disease (Colorado has reported only 10 cases of Lyme to the CDC in 27 years!).
Don't go by "reported cases"....that is a VERY flawed indicator of the amount of lyme disease in CO.
There is at least one very able LLMD in CO. Let me know if you need his contact info.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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