Lyme arthritis. And a meniscus tear

Wow, I have started reading all those links you posted and that first article was amazing and very informative. Thank you. I may not get through them all. I knew that birds can also bring ticks into your yard, flying over whatever fence you have tried to construct to keep deer out. I'm not doing a fence. Useless. I will continue with my "predator guard" red lights I found on Amazon which do work at least at dusk and night. Any good scary deterrents for deer during the day? Since deer are so destructive to gardens, eating my mature hostas to the ground (never plant those, they are "deer candy") and 55 year old rhododendrons (ditto) I had started using "Liquid fence" a few years ago and that stuff does work. It's a natural concoction of garlic and rotten eggs essentially that only smells nasty to us for a short time but the deer can smell it for a month. So I had been doing that for a couple of years to spare my vegetation. And hanging Irish spring soap from my rhodeys. 22 years ago when we moved here there were many many fewer deer and I never had to do anything. Then the herds exploded and I noticed all the destruction to my vegetation about seven years ago. I may have gotten my first case 15 years ago on Plum Island and not in my yard. I think I got this second case in my yard!

However, The REAL and only solution for us is to move to a much more urban town. I would love to. Easier said than done and costly. Meanwhile I am glad I sprayed this year for the very first time. I am glad my pets are gone and my kids are grown up. I couldn't take worrying about all that constantly since having pets that go in and outdoors increases your risk. My husband doesn't garden or do yard work, smart man. I am too afraid to garden any more around here.

Has anyone moved to the city?? It's a drastic step but these diseases are just too much. I do believe woodland paths should all be marked as tick habitat. It would be a small step in the right direction of public education.

The good news is I am feeling better today. It's my second "good day" in a row. This is the third week of my PICC line Ceftriaxone. My Dr. at MGH said it would not work until the third week, IF it worked. He had already put me on 30 days of oral doxy last month that did not work this time. Last May it worked and (different Dr.) got my Lyme to go away for seven mos but then it relapsed . Current Dr. (you are correct on who that is but I thought we were not supposed to identify doctors?) thinks it "never really went away".

I keep questioning whether this is *really* all due to the Lyme and not my meniscus tear or natural arthritis but he seems convinced it's Lyme. But I don't have my blood tests. If he was part of the outmoded treatment guidelines of years ago, only giving 30 days of antibiotics he must have changed.He was talking about methotraxate after this if this didn't work. Has anybody been on that?? I guess I'm wondering how much longer the PICC should stay in since I just now seem to be getting results, just as he predicted. It's supposed to come out next week. It's been a big hassle and very expensive I guess (insurance paying thank goodness) but I would do anything to be able to walk normally again! But then this is scary because this means it really IS LYME and he was correct. A big part of me would have preferred to be able to just go get the arthroscopic surgery my other non Lyme literate Dr said I needed immediately after he finally did an MRI after I insisted and saw my meniscus tear. My Lyme Dr. did an ultrasound at MGH and was convinced it was Lyme arthritis, so I cancelled the surgery. I guess he should know. He's an old gentleman who has been looking at Lyme for decades. I HATE THIS DISEASE!

" hanging Irish spring soap " - well, that's a new one for me to hear about! LOL! But, hey, if it works, it works!! LOL!

Moving to the city really isn't going to stop someone from getting these infections. We have had members that have lived in very large cities - and not going outside the city - still get these infections. There is literally no where these infections are not present in the area.

YAY!! I'm so very happy to hear that you have had 2 good days!! Congratulations!!!

Please be sure that you are detoxing well so you can avoid the herxing that will likely happen.

We are excited to hear that your doc is changing his position on treating these infections, believe me!!

I've not used methotrexate. I would encourage you to start a new thread to ask about this med as it's not an abx and is usually used for chemotherapy and is an immunosuppressant. As a chronic infection patient, we really shouldn't be taking immunosuppressants, so hopefully that is a typo???

Hoping to Walk -

Bird hosts for the infected ticks is the worst culprit because of heir migration patterns. For instance the Carolina Wren has a migration pattern that encompasses half of the country. Like people and animals, birds don't adhere to state boundaries, which is the defining criteria for where .gov insists Lyme is or can't exist. It's absurd.

Also, the microbe has mutated and many other genospecies and strains have popped up in other geographic ateas but since they, too, don't fit the early science based on the single strain, their existence is denied and people from entire states continue to get sicker and go undiagnosed and untreated.

When and why were you on Plum Island? That's very interesting.

We speak the truth here and you also deserve the truth.

We limit reference to Lyme specialists by name as a protection against the Steere's of the world. We speak openly about Steere and other IDSA leadership (even though many don't actually treat Lyme patients) because Steere has promoted himself world-wide as an early Lyme researcher who helped craft the early and very narrow definition of Lyme disease.

Since the early development of his research, to protect his research and for many other reasons, Steere and his cohorts have developed a shockingly comprehensive campaign to discredit anyone and any science that tries to broaden the scope of this disease and serve the real impact of this disease more accurately.

The direct result of this campaign is that the Lyme epidemic has exploded from the geographic limitations of a New England suburb hard to catch, easy to cure nuscience to what we have today - a dangerously uncontrolled epidemic where MOST people infected can't get an accurate diagnosis early enough to obtain adequate antibiotics before Lyme manifests into a chronic, very difficult to cure condition. This is primarily due to the horribly inaccurate testing and poorly created treatment guidelines that are geared entirely to support the bad early bad science.

Many people end up spending years and life savings cycling through countless doctors for a diagnosis, for continued antibiotic treatment and go broke because insurance uses the guidelines to deny treatment.

State medical boards use these guidelines to strip Lyme specialists of their licenses for treating the guidelines as guidelines - not mandates - and treating patients (often successfully) outside of the guidelines' narrow and truncated treatment recommendations.

Steere is at the epicenter of this destruction to lives, families, professions.

What's kind of good for you yet tragic for the rest of the world is that Steere goes public, writes articles and uses taxpayer funds for further studies - that do nothing but continue the disinformation campaign to deny the research that proves the guidelines are inadequate and the Bb spirochete can cause persistent infection. His campaign is primarily to establish in the public eye that 30 days is of antibiotics is CURATIVE and if you have continued symptoms it isn't Lyme, it's psychosomatic or due to some other mysterious conditions (with the exact same symptoms as before, when you were diagnosed with Lyme yet automatically cured at the 30 day cut off. )

One has to ask - why wouldn't he treat you exactly in accordance with these guidelines if they are curative for the rest of the population? And if he is "open" to the broader science proving Lyme usually doesn't comply with such a narrow definition of Lyme, why is he working so hard to publicly discredit that openness?

You seem to be a very intelligent person - so the truth about Steere will eventually be revealed to you at some point. If it were me, I'd want information now, especially with my health on the line.

My intention is not to insult you at all - just the opposite - to offer any support you are interested in. You deserve information since you clearly don't fit this narrow definition of Lyme and there will likely be a point in which he'll declare his job done and deny you continued treatment because "persistent Lyme doesn't exist".

We're here to continue supporting you and asking any questions you may have!

- p

No one really knows what the stats are about Lyme, because the testing is so poor.

I'm so sorry that you don't believe the science presented. Like Pirouette said, you deserve the truth. There were studies done in the US as well, but I wanted to show that there are many countries that are discovering this fact.

Of course we wish you speedy healing as well!!

I LOVE visiting MA. I used to live in NYC and worked and vacationed all throughout New England. There is nothing like it. Oddly, while I spent weeks on Nantucket, Martha's Vineyard, Wellfleet, in/around Cambridge and Boston, often out in open fields looking at potential construction sites, it was SALEM where I was likely infected.

I was there for a week for work and arrived early on Sunday afternoon so I could explore the historic sites. After 2 hrs walking the streets of touristy Salem, I was back in my hotel room and OUT. All of a sudden I developed a hortible flu (I never get the flu and haven't since), that evening was a blur, the next day a colleague had to cover for me - I couldn't function. This was 18 yrs ago. It all went very slowly downhill from there.

We all know how hard it is to relearn shat we have been taught about Lyme. Each one of us has had to. Oddly, it's in the most endemic areas where people have had to relearn the most. There was a very powerful and effective "education" campaign a decade ago that stunted progress and true education, and now we have a serious epidemic.

The infection statistics you are referencing are likely based on surveillance criteria the CDC developed to track trends in infection rates - this is the CDC's primary function. But it is the worst and least accurate tool to use for identifying the presence of Lyme in populations.

The Council of State and Territorial Epidemiologists (CSTE) is the organization responsible for providing CDC disease surveillance guidance. For the surveillance criteria to be Functional for the purposes of identifying a trend (NOT for quantifying new cases) it must be extremely accurate, and therefore the criteria to qualify "new cases" is exceptionally strict so that it doesn't accidentally include some other infection.

This is all well and good and business as usual. Except that the CDC uses this surveillance criteria to determine "new cases" every year, when it's actually capturing only a fraction of them. So few, in fact, the CDC had to revise its estimate back in 2013 TENFOLD. Unfortunately, this still misses many many cases because the criteria is developed from this early, narrow definition of Lyme that have to meet several unrealistic criteria.

Additionally, the surveillance criteria depends upon proper reporting by State Depts of Health, who rely on proper reporting by physicians. But the reporting process is so cumbersome that most don't do it. Studies have shown that in some states, 70% or more of new Lyme cases go are unreported EVERY YEAR.

As was shared during a recent Lyme innovation conference to help address the current epidemic, according to Catherine Brown, DVM State Epidemiologist at the Massachussetts Dept of Public Health, 35% of new Lyme cases reported to DPH went unconfirmed(and therefore unreported to CDC). And again, those are only cases that qualify according to surveillance criteria (in order to be deemed Lyme and require reporting), which even the CDC has warned should not be used to diagnose, but the IDSA ignores this warning and the CDC ignores that the IDSA ignores it.

On top of that, the IDSA has insisted on using the CDC's surveillance criteria literally, despite the CDC's warnings, to force incredibly unreliable testing and treatment guidelines upon the public for decades now. The former CT Atty General, Blumenthal filed charges against the IDSA Board to bring to light many financial conflicts of interests held by he board and there have been numerous hearings held with Congress to try to resolve these issues.

This is why many states have slowly forced legislation to at least protect clinicians from being persecuted and sued for not following IDSA Guidelines and to require insurance coverage for adequate treatment. MA just passed such legislation - surely you noticed the debate.

Now is the time, while you're finishing up this last round, to explore a Lyme specialist who has a broader understanding of how Lyme manifests and can help guide you toward more effective treatment. A single antibiotic is likely not going to be effective in he long run and you could also be on a broader protocol to help your body process the antibiotics more safely and comprehensively, reduce inflammation and prevent further infection.

You might be interested in science journalist Pamela Weintraub's book Cure Unknown that not only chronicles the Lyme story and it's science evolved, how it developed into an epidemic and she also weaves through it her personal saga of moving her family to Chappaqua, NY where her entire family was struck down w/Lyme and how difficult it was to wade through the mess simply to get properly diagnosed and treated. Took years from her kids' lives. Eventually - she and her husband did what you're suggesting - moved to a downtown STamford, CT high rise and then to Brooklyn. Great book.

-p

Post Edited (Pirouette) : 8/9/2016 3:46:06 PM (GMT-6)

I think your insistence that urban areas don't have Lyme is strange. And it's not like they check mice and birds in at the gate. LOL

No - the "takes awhile to manifest itself" is another misnomer.

Besides, my trip to Salem and trips to cape cod were years apart. I know my body and know when I was likely infected and where and when the symptoms began.

You really should educate yourself about Lyme. You're holding onto archaic info.

I've been researching Lyme for over 2 years. You're also arguing with others here who have been researching for decades. That you're so adamant about your own ( limited but outdated) knowledge is a little unfortunate, as it's strange that people are so married to what they think they know to the point that they almost want to be duped. Where in the world did you get the idea that science, nature, the animal kingdom, pathology doesn't evolve?

open YOUR mind to learning new things - it's right there in front of you. You're rejecting scientific information because... you don't like how it sounds?? You know better?? Anecdotal info is more interesting?? You miss the good ol' days???? It's baffling to those of us who can talk the science.

But in your case it's also extremely risky.

And here we are, offering to help you relearn a lot of bad information, and your reaction is to insult it. I'll take evidence-based "crackers" over willful ignorance any day.

Thanks for stopping by - I hope you figure out your situation "in time". When you are out three, still grappling with questions, we'll be here with answers if you need us.

ETA: and I really do mean that. Ignoring the truth about Lyme can be quite dangerous and our main objective on this forum is to help people.

-p

Post Edited (Pirouette) : 8/9/2016 8:21:25 PM (GMT-6)

From ILADS:

"While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals, and a recent paper last year documented that this can occur in - See more at: http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php#sthash.SGaCyOpN.dpuf

www.ilads.org/lyme/what-to-do-if-bit-by-tick.php

Hoping to Walk

I've been following this thread but didn't post until now because you've been given great information already.

Please read through the links that have been shared with you - your life can depend on it.

If you read my signature, you'll see that I'm a victim of CDC/IDSA guidelines. The other mods have shared information with you that shows how those guidelines fail us.

Ironically, my son shared with me an article in his most recent copy of Men's Health magazine and I was surprised (but happy) to see that it contained mostly accurate information.

You will see that it's long-ago been determined that mice are the main reservoirs for Lyme:

www.menshealth.com/health/scary-truth-about-lyme-disease

And, you'll find that people can get Lyme even if they live in a city:

www.huffingtonpost.com/leo-galland-md/lyme-disease_b_3287948.html