lollie010 Posted June 19, 2014 Share Posted June 19, 2014 Today is the day DS 5 has an apt with the infectious disease specialist. I'm kind of surprised that this is where we are. He had a tick on him On April 13. Never had a rash, but started having fever and night sweats exactly 2 weeks later. Eventually, he had excruciating leg pain with extreme fatigue. Starting having headaches and severe stomach pain. Major allergy flare ups began and his lymph nodes started swelling. His pediatrician though mono but that was ruled out and he was sent back to the allergist who took everything very seriously and recommended the infectious disease specialist for Lyme testing. But, the last two weeks he has been almost like himself again except for headaches and stomach pain. The doctor still wants to evaluate him even though he's feeling a lot better. I'm a little nervous and wondering what the process will be like, especially since Lyme is not common in our area. Quote Link to comment Share on other sites More sharing options...
Spryte Posted June 19, 2014 Share Posted June 19, 2014 Are you seeing an Infectious Disease specialist who follows the IDSA guidelines? (Infectious Disease Society of America, I think) Or are you seeing a doctor well known for treating Lyme and co-infections (in layman's terms - a Lyme Literate Doctor), who follows the protocols set out by ILADS (International Lyme and Associated Diseases, if I remember that one right)? The two groups are both professional, peer-reviewed, science-based associations but they have very different approaches to the treatment of Lyme etc. I could write a novel on why their approaches are different, and which is better. They are *not* friendly to each other. The IDSA says essentially Lyme is hard to catch, easy to treat. ILADS essentially says it is easy to catch and very complex to treat. What to expect at your appointment will vary radically depending on which type of doc you see. Hoping whoever you see, that you get good treatment for your kiddo. Quote Link to comment Share on other sites More sharing options...
lollie010 Posted June 19, 2014 Author Share Posted June 19, 2014 Are you seeing an Infectious Disease specialist who follows the IDSA guidelines? (Infectious Disease Society of America, I think) Or are you seeing a doctor well known for treating Lyme and co-infections (in layman's terms - a Lyme Literate Doctor), who follows the protocols set out by ILADS (International Lyme and Associated Diseases, if I remember that one right)? Thanks so much. I think he will be just a standard ID specialist. I cannot imagine that we even have anyone in this area who would be considered Lyme Literate. That is one of the reasons I am so concerned. :( There was one encouraging thing about the doctor, though. He had his secretary call me and let me know that even if he had vast improvements in the way he was feeling day-to-day he didn't want me to cancel the appointment because Lyme is tricky and there are definite cycles. For some reason that made me feel like maybe he "gets it." Everyone has said there is NO Lyme in this area, except the allergist and the ID specialist who say that is not true. Statistically, he is very unlikely to have Lyme (I don't know if they even consider co-infections) but he sure was sick for almost 2 months. Im feeling uneasy about the whole thing. Quote Link to comment Share on other sites More sharing options...
Spryte Posted June 19, 2014 Share Posted June 19, 2014 Just go, and hope for the best. :) Definitely ask him about testing for co-infections, but remember that there can be false negatives. Honestly, I'm not totally hostile to all ID specialists, though my initial post may have sounded that way. My own LLMD works with an ID specialist sometimes, and he is the one who oversaw my picc line journey (which was long). Hopefully the one you'll be seeing is excellent, and willing to rock the boat a bit as far as treating longer than the IDSA recommends. I think *any* treatment will be better than none for your kiddo, and definitely start you on the right path. One thing I'd advise - every time you leave the office (any doc office!) always ask for a copy of all test results and take them with you, so you can start a binder. If things progress (even years down the road), you'll want those tests. My journey through Lyme started when I was 11. It's a miracle that I have the medical record of the visit when I went in with the rash. No one knew what it was, of course, but now looking back it's clear as can be. That was the start of 20 years of misdiagnoses. Quote Link to comment Share on other sites More sharing options...
Spryte Posted June 19, 2014 Share Posted June 19, 2014 Oh! If you are comfortable sharing your location, I might know of an LLMD in your area (ish), or be able to connect you with someone who does know one. If it comes to that. Quote Link to comment Share on other sites More sharing options...
lollie010 Posted June 19, 2014 Author Share Posted June 19, 2014 Thanks for all the info and the pm, spryte. It feels better just to talk it through. We are on our way to the doc. I'll keep you posted. :) Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted June 20, 2014 Share Posted June 20, 2014 Sounds like he may also have babesia, it is one of the most common co-infections and the night sweats and swollen Lymph nodes are extremely characteristic of it. http://lymedisease.org/lyme101/coinfections/babesia.html I hope and pray you get the help you need. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted June 20, 2014 Share Posted June 20, 2014 Thanks so much. I think he will be just a standard ID specialist. I cannot imagine that we even have anyone in this area who would be considered Lyme Literate. That is one of the reasons I am so concerned. :( There was one encouraging thing about the doctor, though. He had his secretary call me and let me know that even if he had vast improvements in the way he was feeling day-to-day he didn't want me to cancel the appointment because Lyme is tricky and there are definite cycles. For some reason that made me feel like maybe he "gets it." Everyone has said there is NO Lyme in this area, except the allergist and the ID specialist who say that is not true. Statistically, he is very unlikely to have Lyme (I don't know if they even consider co-infections) but he sure was sick for almost 2 months. Im feeling uneasy about the whole thing. Every state has Lyme http://module.lymediseaseassociation.net/Maps/ Quote Link to comment Share on other sites More sharing options...
Lakeside Posted August 30, 2014 Share Posted August 30, 2014 For those of you with experience with LLMDs and ILADS, is there a recommended length of treatment to start with? From what I can tell the ILADS approach is more dependent upon the symptoms of the patient and less on a standard, one size fits all type treatment. Would that be an accurate assessment? Quote Link to comment Share on other sites More sharing options...
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