Greetings -- and welcome to MedHelp Lyme.
Here's one quick starter comment to your post: You ask: "Oh and a bonus anyone in the military? Is there a way to tell the doctors to do their job and not just shrug me off as a psycho? It makes me so sad that they like don't believe my symptoms."
This is the rallying cry of many of us who have or had Lyme disease and could not get a doc to wake up to the whole situation -- and what you describe above is a common attitude among all kinds of medical personnel, not just military docs.
Lyme is a relatively new infection in the last few decades, and the medical community as a whole is still largely clueless about it. The docs are clueless not out of malice, but (imo) are clueless because the practice of medicine is so fragmented into specialties that a subtle and sneaky new infection like Lyme disease has an easy time fooling even really good MDs who don't see the Big Picture.
Ticks carrying 'Lyme' disease often (maybe half the time) bring along other infections unrelated to Lyme disease, and these other infections confuse the diagnostic picture both in testing and in treatment. The scientists/MDs who first identified Lyme only a couple of decades ago are still high up in the medical hierarchy and in the practice of medicine -- and as in many human endeavors, these original Lyme docs cling to their initial impressions that Lyme is not serious, not widespread and need not be treated aggressively.
Another common view held by docs who do not really understand Lyme is that symptoms of Lyme persisting after a couple weeks of doxycycline treatment are simply your immune system over-reacting to a now-dead infection. What is far more logical is that the infection is just not yet cured.
As a result of persistent 'old-think', younger and newer docs are still taught to follow the teachings of the early Lyme docs, which retards advances in medical diagnostic and treatment. This is all getting better, thanks to MDs who use the ILADS*-type approaches to Lyme, but there is still territory to cover, which is noticed more now than ever because Lyme is spreading widely and quickly. There is a book (now in paperback) called 'Cure Unknown' that lays out the whole sorry mess of medical politics in Lyme disease diagnosis and treatment. It is worth the read, if you feel well enough to process it now or later.
Note: * ILADS is a voluntary association for medical personnel who take a broadminded view of how to diagnose and treat Lyme and other infections the 'Lyme' ticks may also carry. ILADS = International Lyme and Associated Diseases Society.
About military medical care: it can be excellent, but most docs (whether military or not) are following the playbook that says Lyme is rare, hard to get, and easy to kill with a couple of weeks of doxycycline no matter how long you've been ill.
Uh, ... no: Lyme is spreading very quickly throughout many or most areas, but the docs are still taught that Lyme is (altogether now!): 'rare, hard to get, and easy to cure.'
When Lyme started spreading a couple decades back, the standard treatment of a few weeks of doxycycline antibiotics ['doxy' for short] was thought to be enough to kill all the bacteria, as with other bacterial infections. However, the docs who originally identified Lyme disease just didn't know that Lyme bacteria shield themselves in slimy areas in the body called 'biofilms', and the view of these original docs was that a couple weeks of doxy was plenty to wipe out the whole Lyme infection.
So-called mainstream medicine still teaches that view (that a couple weeks of doxy is all you need), and if you still have symptoms afterward, it is your immune system over-reacting to a *now-dead* Lyme infection. That is the view of most docs -- except for Lyme specialists, such as those who founded and belong to ILADS, the International Lyme and Associated Diseases Society. ILADS is a voluntary organization with no entrance exam I am aware of, so some of the ILADS-member docs may not all up to speed entirely ... so beware and, if you can, get a recommendation from a friend who has had a good experience with a Lyme/ILADS doc.
You will also see the term LLMD, which is patient slang for a 'Lyme-literate medical doctor' -- meaning an MD who thinks more up-to-date thoughts and approaches to testing, diagnosing and treatment Lyme disease and other diseases the 'Lyme' ticks often carry.
You may or may not find a military doc who follows the ILADS approaches to testing, diagnosing and treatment, and if not, you may have to go outside to civilian docs. It may cost you some money out of pocket, but it's worth it to get your health back. ... And here's a kicker to get your attention: the Lyme bacteria are in the same bacterial family as syphilis bacteria. Syphilis and Lyme are both curable, but accurate testing, diagnosis and treatment are critically important.
Many Lyme docs do not accept insurance (tho insurance companies often reimburse out-of-network MDs who diagnose and prescribe for Lyme patients -- my insurance did, and it was a very mainstream insurance company). If you can't pull off that approach, then consider charity organizations who assist those without funds in order to treat Lyme and its associated co-infections (bartonella, babesia, ehrlichia, and a few others); two of those helpful organizations are LymeTAP and LymeLight Foundation, according to what I read. And there's always family who might loan to you, once they understand what's up.
Bottom line: do what you have to do in order to get well. Lyme will not just go away by itself, and untreated Lyme is as serious as untreated syphilis, from what I have read. I don't know if military health care is up to speed on Lyme, but it's worth snooping around to see if they follow ILADS diagnosis and treatment before you go out-of-network.
So that's the lecture for today. If you're up for reading or even just skimming, the book 'Cure Unknown' is worthwhile. There is also a video version, and downloadable and print versions are easy to find online.
Someday this mess about Lyme diagnosis and treatment will be figured out, but don't wait. Getting properly diagnosed and treated is the best money I ever spent. Let us know how you do and how it goes, okay?
And thank you sincerely for your service to our country.
I will keep you updated thanks for the reply
... and PS, the book titled 'Cure Unknown' has a very unfortunate title. I suspect the author was being sly, because the 'cure' that is 'unknown' is not about Lyme itself -- the incurable ones are the dunderheads in the medical profession who refuse to believe or understand that Lyme is not the equivalent of the sniffles.
Lyme is treatable and curable. I'm living proof, and I'm not the only one. You go! ... and keep us posted.
I found a website yesterday with the first chapter of Horowitz' book _Why Can't I Get Better_ free, and besides being a refreshing look at how diagnosis should be done, there was a list of Lyme symptoms and symptom categories. It probably doesn't make you feel any better right now, but for some small comfort, yes, every one of the symptoms you list in your summary can be caused by Lyme.
Also, regarding your question about the Lyme bacteria seeming to be dormant for years, yes, that can happen also. Sometime the disease kicks in right away (many times from unnoticed bites), and sometimes the body's immune system more or less keeps the infection in check until something else happens that throws things out of whack and the bacteria take advantage. Then the infection can evolve to show the symptoms of Lyme disease and generally make life miserable. The "something" could be another disease, or stress, or an injury... seems like almost anything that changes the body's status quo. And of course just to make it interesting, it seems the only constant about this darn disease is that it varies.
I'm hoping mightily that you can find a doctor who is willing to work with you, and who either knows enough or will learn enough to get you through this. My dad was in the Army 1942-1964 and from the stories he tells... even though he likes to tall tales sometimes, I hope the military medical system has improved since then.
Best of luck to you, and please keep posting to let us know how you're doing.
I have to amend my remarks about the military medical system 60+ years ago... incomplete and not quite fair! My dad used to say that he had to tell the doctors what they needed to do, but I guess that's not much different from what we find with Lyme and non-LLMDs today! But I believe there's also an art to balancing the various treatments to attack all 3 forms of the bacteria and working within the patient's tolerances as well.
Anyway, my mother always had good things to say about her own military medical experiences, and also that of all 3 of us kids. So while I still hope it's improved, my previous post reads more negatively than I intended.
I hope somewhere in the doctors accessible to you, there's someone who will work with you, and you find him/her soon.
Your revised comments save me from recounting my excellent experiences with military medical care ... and my lousy experiences with non-military docs. They're all just human like the rest of us. :)
Thanks, I'm in the middle of PCSing right now so hopefully at my next base they will try to help me. I'm actually going to Maryland which from what my research says the best Lyme Doctor alive lives there. Maybe God had my orders switched for a reason as I was originally supposed to go to Texas
It's the doc that counts, and there are many excellent docs in quiet places. The politics of Lyme cause docs in some states to keep a low profile, but there are ways to find the quiet ones.
There may not be *many* of them in some places, but they are out there. For example, a referral source to find Lyme docs in Texas could be TXLDA, the Texas Lyme Disease Association.
Yes!! I do believe everything happens for a reason, even though much of the time we don't see until well after, if at all... but this seems timely!
Hang in there - sure looks like help is coming soon!