"TOUCHED BY LYME: Recovery is a long, slow, balancing act"

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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phyfe
Posts: 167
Joined: Sat 15 Sep 2012 19:28

"TOUCHED BY LYME: Recovery is a long, slow, balancing act"

Post by phyfe » Tue 2 Apr 2013 6:50

http://lymedisease.org/news/touchedbyly ... overy.html

By Jennifer Crystal

Great article! (But the title is misleading--give it a read anyway.)
Guest blogger Jennifer Crystal says there is no "magic secret" to getting over chronic Lyme disease.
After each blog I post, I receive dozens of emails from Lymies asking what I did to get better. People question whether I tried certain treatments, whether I’ve considered herbal therapies, whether I can tell them the magic secret to getting over chronic tick-borne disease. Rather than continue to email the same response, I thought it might help to address these questions in a post.

The first and more important thing I must tell you is that there is no magic secret. There is no set protocol for treating tick-borne diseases, because every case is different. Variables such as duration of infection without treatment, spread of infection to different areas of the body and brain, and presence of co-infections make it impossible for doctors to treat any two cases the same way. Lyme manifests itself in myriad ways, and people respond differently to various treatments. Some patients suffer more from joint pain, while others’ chief complaints are neurological. It’s important to find a Lyme-literate physician who can assess which treatments are best for your specific case. My LLMD spent two hours with me on our first visit getting my complete medical history; since that appointment, I’ve felt confident that he is treating the patient, not just the disease. That’s half the battle in conquering complex cases.
See remainder of article at the URL above.

Camp Other
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Re: "TOUCHED BY LYME: Recovery is a long, slow, balancing ac

Post by Camp Other » Tue 2 Apr 2013 18:17

phyfe wrote:http://lymedisease.org/news/touchedbyly ... overy.html

By Jennifer Crystal

Great article! (But the title is misleading--give it a read anyway.)
Guest blogger Jennifer Crystal says there is no "magic secret" to getting over chronic Lyme disease.
After each blog I post, I receive dozens of emails from Lymies asking what I did to get better. People question whether I tried certain treatments, whether I’ve considered herbal therapies, whether I can tell them the magic secret to getting over chronic tick-borne disease. Rather than continue to email the same response, I thought it might help to address these questions in a post.

The first and more important thing I must tell you is that there is no magic secret. There is no set protocol for treating tick-borne diseases, because every case is different. Variables such as duration of infection without treatment, spread of infection to different areas of the body and brain, and presence of co-infections make it impossible for doctors to treat any two cases the same way. Lyme manifests itself in myriad ways, and people respond differently to various treatments. Some patients suffer more from joint pain, while others’ chief complaints are neurological. It’s important to find a Lyme-literate physician who can assess which treatments are best for your specific case. My LLMD spent two hours with me on our first visit getting my complete medical history; since that appointment, I’ve felt confident that he is treating the patient, not just the disease. That’s half the battle in conquering complex cases.
See remainder of article at the URL above.
Good points, phyfe.

I did read the full article, and agree with what you've quoted above. There is no one answer for treating patients with tickborne diseases because the answer has to be tailored to an individual. There are probably common treatments, though, which overlap in patients with similar profiles (e.g. similar preexisting conditions, the same coinfections, similar genetic backgrounds, infected by same strains of bacteria) and I think it would be useful if treatment and patient outcomes were more closely tracked in this way to learn more.

One of the reasons I don't write about treatment approaches on my blog in any detail is because anybody coming through and asking me about treatment is going to need individual treatment designed for them anyway - and I'm not a medical doctor who can sort that out for them. They need to see someone who has experience diagnosing and treating tickborne illnesses, someone who can factor in the individual patient's medical history and background.

Another reason I don't write about treatment approaches on my blog in any detail is that the internet is chock full of Lyme disease patients who are already writing about what their treatment is as an individual and/or are mentioning various alternative treatments which they are trying which have various amounts of evidence to support their use. And I think there is enough of that sort of information available out there that I wanted to focus more on writing about what I saw as the gap - topics that weren't discussed as much but people might be interested in, including science.

I think for those patients like myself who have persisting symptoms, more research is needed to determine what is happening to us and how to more effectively treat it. I see this as a separate issue from whether or not one has coinfections, because if one has figured out they have them and can treat them, in time they will get better. It's the patients who continue to be sick and in pain for years after being bitten and after trying extended treatment who need something different. That something isn't available yet, but whatever it is will have to deal with the immune system.

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