I think it's criminal that the standard medical community doesn't change treatment regimens to make it possible for longer term antibiotic care for Lyme.

I know why - there's a huge public health concern over a huge swath of people taking large doses of antibiotics for long periods. Antibiotic resistance, etc. I think that's why the CDC is fighting so hard to keep this clearly improper three week doxycycline regimen so burned into stone. From personal experience, it is woefully ineffective. One friend of mine was cured after three weeks, the other friends of mine needed 3 to 5 months and still have relapses here and there. I come from the scientific community so I wanted to believe the infectious disease docs trained by our medical schools but now I think they are completely clueless.

They will change if/when it happens to someone they know or love (and I sincerely hope it doesn't as I wouldn't wish this on anyone.)

misty i've been on various mixes of antibiotics for almost 18 months and i'm still having not only original symptoms but new symptoms popping up some after a year of being infected. every person has their own unique profile, infections, immune system capability, etc. so each requires an individual wellness program. this flies in the face of today's patient profit mill medical structure where time=money is first and foremost before patient care. sure some doctors buck the system, go out of network, etc. but most have to work within the structure and come to accept it.

I was given an open prescription for minocycline for a rosacea diagnosis. And it ended up not even being rosacea. Ridiculous.

My answer to the overuse of antibiotics with lyme is:

Diagnose sooner...when it's more likely to treat in less time.

Don't blame me that it wasn't on your radar...


When I discussed long-term abx with my regular Dr. - she said that Tuberculosis is a long-term treatment...and she has treated someone for year and a half. (with antibiotics)
I don't think anyone is concerned about that though, are they...

Yes, that's why I'm not so worried about taking doxy for awhile since they give it out for acne. I just started again after getting in to a LLMD. I started having GERD issues though after intermittent antibiotics from the other docs (not enough and not long enough). I feel pretty fatigued after 5 days back on. Pushing through though. Probably had Lyme a long time. Whatever. In the solution, I guess. This disease sucks!

Psilo, you make great points. I have a PhD in neuroscience. Not that useful here but I try to trust the establishment. With this, I think they are wrong. Sounds like you agree.

I watched Daryl Hall talk about it and from hearing my friends who had worse cases of Lyme, it just made me realize that only a minor percentage of Lyme sufferers really get well after a short course of antibiotics. Even with the bullseye. They end getting sick later even after treatment.

ps: when will the CDC release 2015 stats?

Don't beat yourself up for this though! It's NOT your fault! It's the fault of the medical establishment.

But, do be sure to understand what good treatment is and stick to it until symptoms resolve.

2015 CDC stats? I wouldn't hold my breath.

Interestingly, back in '08 the CDC published two very detailed maps indicating "incidence (reported cases) per 100,000" county-by-county for 1992-2008 and 2000-2007. They also had this cool map that was interactive and you could click on your county and see the numbers of cases reported and numbers of "established scapularis and pacifica vectors" from 1907-1996.
lymediseaseguide.org/lyme-disease-map

These maps are no longer on the CDC site, as far as I can tell. They only exist in prior reports or articles that cited them with an image.

They've been replaced with far less detailed and "schmears" of color across swaths of states that couldn't be more vague indicating prevalence. I haven't looked deeply into how often they revise the actual reporting but it doesn't matter because ALL of the quantification the .gov has done to identify where lyme is and how many people have it is so grossly inaccurate.

I've done some digging into this and will post more info at another time and will include links to studies, articles, etc. in that future post. For the following reasons, I calculated that the true number of "new cases" of Lyme every year is VERY conservatively closer to 2 million.

CDC SURVEILLANCE CASE DEFINITION: This surveillance criteria rules the process of testing, diagnostics and reporting. While it was developed strictly for the CDC's purposes of documenting trends in infectious diseases, and although the DCD has explicitly warned against using this criteria for diagnostic and treatment purposes, the IDSA ignores this and the CDC ignores the fact that the IDSA ignores it. So this criteria keeps "new cases" artificially low through reporting criteria, testing, diagnostics and treating criteria.

UNDERREPORTING: The process by which MDs and State Depts of Health have to follow to report new cases is incredibly cumbersome and most don't report and often DoH's don't follow up in order to confirm. Studies have been done that indicate the majority of cases in GA, CA, MA, MN... it's safe to assume that if there is underreporting in endemic areas, it's happening nationally. Let's conservatively assume 50% of cases are not reported each year. This doubles the CDC's 300,000+ reported cases to 600,000 cases.

INACCURATE TESTS and DIAGNOSTICS: In 2008 appx. 3.4 million lyme tests were administered (clearly, that number has gone up). Studies have shown varied statistics but they probably average to be a 50% accuracy at best for the two-tiered testing criteria ---due to the fact that this two-tiered criteria was designed around the CDC surveillance criteria and include strict criteria that provide false negatives more often than not.

Also, it's nearly impossible to quantify the number of cases that are positive but are denied by ill- or dis-informed MDs.

At best, this is 2 million new cases per year...

Keep in mind that these are the LUCKY people who were able to see a tick or EM rash and/or caught it early and/or got to a knowledgable MD who was willing to ignore IDSA Guidelines and administer the right test (often this is the IGeneX test) and all this was done "in time", etc... this is truly crapshoot.

And keep in mind that this is just NEW cases in one year.

Math hurts.

-p

Post Edited (Pirouette) : 7/20/2016 7:19:33 PM (GMT-6)

I just got offered two really good jobs simultaneously (after having the rug pulled out of me in March when I got so horribly ill with Lyme.). It short-circuited my career as a scientist and I had to apply for industry jobs with less repetitive motions (pipetting etc. because I had so much pain in my arms in the acute phase.)

I just need recovery from the fatigue so I can do these new jobs. Sigh. Lyme is such a curve ball.

misty51 said...
Thanks, Traveler. Do I just push through this horrible acid reflux and fatigue? I want to get better. I'm mad at myself that I didn't follow you guys' directions. I just trusted my doctors but hundreds of dollars later and still feeling like crap, I think they are/were wrong.

I try to not get into too much of the political side of what's going on, because it sets me up for another long rant! LOL! I figure no one here needs too many of my rants!

Misty, no, don't just push through it, keep trying to find things that will help ease it. Remember, the less stress on your body from something like that, the easier time your body will have while healing usually. No one can predict just how your recovery will go, but we can do things to make it easier on the body. Reducing the stress and supporting what systems/organs that need it can is really be helpful.

For the nausea:
Try sandwiching the meds in a meal.
Try drinking ginger tea 3 or 4 times a day.
Try drinking peppermint tea 3 or 4 times a day.
Talk with your doc about anti-nausea meds.

For the fatigue:
Make sure you have a very good sleeping situation.
The room cool/warm enough, either very quiet or soft music playing to help cover noises.
Your bed and pillow are comfortable.
Take 20 minute naps during the day in a quiet area. This isn't always easy to start, but we can help.
You can try some of the over the counter supplements that others here use to help them rest better:
melatonin
valerian
Tryptophan (I use the Lidtke brand and it's helped me a lot)

I also use teas that will help me ease into sleep like Celestial Seasonings Sleepy Time or Bigelow's Sweet Dreams tea.