Lymes disease?

[ang79]

I know we have some Lymes Experts here. My college age niece had a tick at Thanksgiving and did a round of antibiotics. She wasn’t feeling well this week and went back to the doctor and has tested positive for Lymes. She is trying to schedule an appt. with a specialist. What treatment advice should she be looking for?


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[pinkmomagain]

Sorry about your niece. Definitely do a search -- there has been a lot posted on this. I believe it is Melbel who is the expert.

[NCGrandma]

I also remember a lot of threads. By the way, when you do a search, it is "Lyme" not "Lymes" disease.


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[JBaxter]

Over the holidays my aunt who has been being treated for Parkinson's disease for 18 yrs found out it was NOT Parkinson's but advanced Lyme disease she tested negative with the standard test given at most Dr offices but tested positive for Lymes and 3 co-infections with a new more sensitive urine test. The symptoms are so varied its crazy.

[MSWR0319]

She needs to find a Lyme Literate MD. What state is she in? Treatment will more than likely include antibiotics for a long time and possible other meds depending on if she has co-infections, etc. I'm sure Melbel will chime in if she sees this.

[ang79]

She needs to find a Lyme Literate MD. What state is she in? Treatment will more than likely include antibiotics for a long time and possible other meds depending on if she has co-infections, etc. I'm sure Melbel will chime in if she sees this.

She lives in PA but attends college in NY (Keuka college) and heads back to college in Feb. so I think she wanted to find a doctor close to school (more likely to make it to appts. then). Not sure if she has other active infections right now, my brother just texted this morning that she wasn't feeling well this week and went back to the doctors and they tested her since she had a tick when she was home at Thanksgiving.

I found some old posts and sent my brother some links that Melbel listed in the past and told him to look for an ILADS doctor, that's the type that treats it more aggressively, correct (vs. the school of thought that one round of antibiotics does the trick and its something you get over like strep).

[ezcc]

While Lyme can certainly cause long term problems it definitely doesn't always- I had a pretty severe case that was resolved with the standard antibiotic treatment. I think one thing that makes it tricky is the testing- the test could show positive from her having it in November, but her symptoms could be something else.

[mmsmom]

There are several Lyme specialist doctors in the Philly area (particularly at UPenn hospital) if she is close to there. It is rampant in PA and many doctors are better at treating here than other areas where it isn’t as common.

[Melbel]

She lives in PA but attends college in NY (Keuka college) and heads back to college in Feb. so I think she wanted to find a doctor close to school (more likely to make it to appts. then). Not sure if she has other active infections right now, my brother just texted this morning that she wasn't feeling well this week and went back to the doctors and they tested her since she had a tick when she was home at Thanksgiving.

I found some old posts and sent my brother some links that Melbel listed in the past and told him to look for an ILADS doctor, that's the type that treats it more aggressively, correct (vs. the school of thought that one round of antibiotics does the trick and its something you get over like strep).

The ILADS standard of care is more patient centered. The ILADS guidelines are the only compliant Lyme guidelines on the National Guideline Clearinghouse website. If a patient relapses with symptoms after standard Lyme treatment, then further treatment is necessary in my experience, similar to virtually any other infection. The CDC/IDSA position - assuming the patient is "cured" after a few weeks of antibiotics and slapping a label for symptoms "Post Treatment Lyme Disease Syndrome" - is a deviation from standards for other infectious diseases. There is a growing body of credible research from prestigious institutions showing persistent infection after antibiotic treatment for Lyme. See http://lymediseasechallenge.org/research-persistent-infection/ Often combinations of antibiotics are required, particularly if the infection was not diagnosed/treated right away.

Ticks transmit more than just Lyme, so there could also be untreated co-infections (i.e. Babesia, Bartonella, Mycoplasmas, Anaplasmosis, viruses). Ticks are referred to as "nature's dirty needles". Babesia is a parasitic infection that causes shortness of breath, headaches, anxiety/depression/intrusive thoughts, fatigue, etc. You need anti-parasitic medications for Babesia, something many doctors miss. Standard labs for Bartonella and Babesia only cover a couple strains, when there are many more that infect humans (Lyme testing only covers a single strain).

In addition to contacting ILADS for MD recommendations, I would contact state Lyme non-profits and join regional groups on Facebook for patient feedback. Lyme can go from more "misery" symptoms to life threatening, even after aggressive treatment has ended which happened to me personally after the infections impacted my heart.

I know of many patients who initially did well with early treatment according to IDSA standards, but relapsed later (i.e. when the patient was under a new stress of infection, injury, significant life event).