Avatar universal

Is it lyme????

I'll give you the full story step by step.

small background:
I'm in the military. I am a 26 year old male. I had lasik in March. I have had a couple panic attacks before in my life. Nothing too crazy mostly just waking up in the middle of the night when my brother-in-law was in the hospital. The other time was right after lasik when they gave me tramadol. I stopped taking it after 3 doses because I realized it was causing them. After that I was fine. I was taking ambient for sleeping.

until the end of May of this year.
I left in April for retraining and was fine for the first month and a half. Then I was sitting there in class and I just all the sudden saw floaters. Now I didn't freak out here. I just called the optometrist and scheduled an appointment. Well he looked at my eyes and said everything is fine nothing he could see. Now this is where I start have some anxiety (I googled the symptoms and yeah. brain tumor/ms.) Well I was like I have been alive for 26 years and never had floaters . I soon noticed that it wasn't only floaters I was seeing but also stars. (not starbursts, which lasik can cause) Like when you get hit in the face type stars. I also see random shapes flickers in peripheral vision. I can see my pulse in my sight for a couple seconds when I stand up. The weird one is random blue things. I'll see like a random blue color but its the type thing that is like did I just see it or maybe i didn't? Hard to explain and every doctor I talked to would look at me like i'm crazy and tell me I have anxiety. I also got this random twitchy feeling on my left side temple. It feels like a tingle or i don't know just something i can feel randomly. The one doctor gave me proponolol (bp/social anxiety med) because I had slightly elevated blood pressure. I think that stuff caused me to become even more anxious, I was having panic attacks for the entire day/night with maybe 5 minutes of relief each day I also hit depression for a week or so (super scary I feel so bad for people that feel like that now that I have experienced it). So I stopped taking the proponolol. I stopped taking ambient. So throughout June I went to mental health to talk about my "anxiety". Both psychiatrist and psychologist stated that I don't have an anxiety disorder. I was just extremely anxious about the changes to my vision. I still though learned how to cope and breathe and all understand anxiety. It helped. I haven't had panic attacks but I am still anxious. The psychologist was a great guy and decided he would influence my other primary care doctor to give me a brain MRI. My MRI came back normal (thats what they said) but I read it and I do have a small mucous retention cyst. I'm not worried about that because its not going to kill me. So I finish up my class and about the last 3 days I wake up in the middle of the night with my ears ringing like crazy. I go into a small panic attack but breathe my way through it. I tell myself everything is fine and I'll get checked when I get back to my home base. Well I get back and I tell the doctor, he says "You have any hearing loss?" I told him I don't know. He says well you would know if you did. Then says his ears ring and I should be ok. He looks into my ears with his instrument and says it looks like I have some fluid and that should clear up in about 90 days. He then sends me on my way. I say ok, I'll deal with it. Well fast forward a week and I wake up and my testicles hurt. It is like a dull getting kicked in the balls type hurt and it goes away. I wait a couple days and the left one seems to stop hurting and it sticks in my right one. I go see the doctor. He feels my balls and says epididimitis. Asks me if I could have an STD, Which wouldn't be possible since I've been married for the past 5 years. So he prescribes me cipro and thats it. So i've been on cipro for the past week and my ball still hurts every now and then. Can CIPRO kill lyme if i am lucky? I am going to be taking it for like 21 days. I'm just tired of falling apart and being anxious because I have no clue what is wrong with me. Not once has any of these doctors given me a blood test, urine, stool anything. But I did have an MRI, so I'm pretty certain I don't have a brain tumor. (though my mind is now being like what if they missed something. Thats a separate question, would a brain MRI with contrast show everything? or would it had been narrowed down because my eye issues (since that is what the doctor was looking for)).
So now I am here and I am trying to self diagnose which I know can be a extremely terrible thing. I just want to know if this seems similar to anyone? Or if anyone has these issues. PLEASE HELP ME. It's terrible thinking about this constantly.

In short. Symptoms:
Eye craziness (stars, flickers, blue things all in peripheral. When I look to the left or right and strain my eye I get a black whole in my vision too) Random twitch feeling in my temple, Ear ringing, and testicle pain. oh and some brain fogginess.

Oh and for the end of it I actually do remember when I was 10-13 years old I found a tick behind my ear. No idea how long it was there or anything else about it but I vividly remember feeling something and ripping it off and seeing it was a tick. I now check behind my ears every time I shower for ticks) Could lyme stay dormant for 13 years?????? Is it possible???

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.

Sorry for the length of this but I could use some help/support.
9 Responses
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Avatar universal
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!
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.  :)
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Avatar universal
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.
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Avatar universal
Hi Sam,
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.
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Avatar universal
... 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.
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Avatar universal
I will keep you updated thanks for the reply
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Avatar universal
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.
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