Lyme Disease awareness

[laurengotdatfire]

I have not been diagnosed with Lyme Disease, however, if you also feel the same symptoms as me, such as:
Severe migraines,Random memory loss, Random vision burriness double vision or "floating specs", Severe pain/pressue in head neck ears and eyes for no medically explained cause such as infection, Brain fog, a "block" when trying to focus or comprehend, Constant sinus problems, Phantom tastes in mouth often metallic or salty, jaw clenching, eye spasms, Acid Reflux, Irritable Bowel Syndrome, Nausea or vomiting on a regular basis, Intense pain in back, humming ringing buzzing clicking swooshing or phantom sounds in ears or head, Head twitches, Severe restless leg and arm syndrome especially when trying to rest, Unexplained random chills, inability to distinguish between hot or cold, Random sweating on face and scalp, Hypersensitivity, increased anxiety, feeling of moving swaying or vertigo when still, heart palpitations, Random painful tingly or numb limbs or distinct spots on the body, and general over-all "weird" feeling.....All gone completely unexplained!!.....to name LITTERALLY around half!!!! Of the symptoms you feel on a REGULAR basis, to the point where no one understands what is causing this (doctors or peers) and you often leave people in disbelief because you are having so many syptoms at once that you are constantly complaining about something. If you know what I mean, you probably feel that you MUST be crazy because you feel so bad and weird every single day that you must be causing it yourself...this is one of the symptoms of Lyme Disease as well!!; If this concerns you, PLEASE tell your GP to give you a blood test for Lyme Disease!!!

More commonly than not does Lyme Disease end up misdiagnosed as one, or more of OVER 400 other diseases and syndromes that it's symptoms mimic. You get the disease from tick bites (if you live in an area with excessive ticks and this applies to you go to the doctor) and it is a bacteria that lives in the brain and attacks the central nervous system. It is easily treatable with antibiotics, unless gone unnoticed for a considerable amount of time, leaving your system traumatized and the feelings chronic. Lyme Disease can even be fatal, but is so easily tested for and cured. I am almost 100% sure I have had this disease for over 4 years and unfortunately when I find something completely relating to how I feel, I have no money and no insurance. If you feel like me and want your life back again, please please please ask for doctor about testing you for Lyme Disease. Thank you!

 

[LivingInTheMoment]

Many times it is misdiagnosed and it can be fibromyalgia-but it sounds more like what you are using is giving you symptoms.
I don't know what drugs you are using, you could be getting affected by your drug usage and getting all these symptoms, so you would not know what it is exactly unless you come off and detoxify first. If they persist after a certain time lapse being clean:
Go and get tested, see an endocrinologist or rhumatologist to give you a more accurate definition/diagnosis.

 

[laurengotdatfire]

Many times it is misdiagnosed and it can be fibromyalgia-but it sounds more like what you are using is giving you symptoms.
I don't know what drugs you are using, you could be getting affected by your drug usage and getting all these symptoms, so you would not know what it is exactly unless you come off and detoxify first. If they persist after a certain time lapse being clean:
Go and get tested, see an endocrinologist or rhumatologist to give you a more accurate definition/diagnosis.

I do not take drugs, I stopped smoking pot for 6 months to see if it was doing it, and the symptoms were persistant. I developed the symptoms around age 10, much before I even thought of drugs. No one has been able to find a medical cause to my pain and suffering other than hypochondria. I have been to an endocrinologist, gastroenterologist, gynecologist, and GP, all tests coming back normal. I have also done my research through the internet, books, doctors, and family members (one who is a doctor out in texas and one who is a nuclear scientist in georgia) and I am utterly convinced I have Lyme Disease. I knew it was something weird that was wrong with me before I ever even heard of it.

 

[LivingInTheMoment]

Sorry to hear that, it can be quite painfull, and very much like fibro. There are forums that you can chat with people who have that, and exchange ideas of how to get the best relief!
Unfortunately docs do place symptoms down to hypochondria and the like, if THEY can't find anything to treat with meds-it is ouside their spectrum.

I have heard people getting lots of relief by accupuncture and certain types of regular massage, I am not certain if you have tried anything that gives you positive relief, as in long term, rather then only short term.

 

[laurengotdatfire]

Sorry to hear that, it can be quite painfull, and very much like fibro. There are forums that you can chat with people who have that, and exchange ideas of how to get the best relief!
Unfortunately docs do place symptoms down to hypochondria and the like, if THEY can't find anything to treat with meds-it is ouside their spectrum.

I have heard people getting lots of relief by accupuncture and certain types of regular massage, I am not certain if you have tried anything that gives you positive relief, as in long term, rather then only short term.

Yeah, no doctor seems to want/care to help me or direct me if it isn't involving them. The medical and judicial system of america is so fucked. But that sounds wonderful, massage and acupuncture. I'm going to look into it and the other more holistic means of relief. The only things that seem to help *for a maximum of an hour* are a hot shower (unless I overheart, which doesn't take much at all,,,and I live in south florida!), a short workout (before my breathing issues start), or smoking pot. None of the forementioned gives me very much relief and can accentuate the symptoms it is not surpressing. I guess it's really a lose/lose situation with these symptoms. I often feel schizophrenic but KNOW what is happening is not real and my brain is making it happen, therefore I can not be crazy. help, anyone?

 

[negrogesic]

Avoid reading too much info about Lyme disease online. It will only serve to make your symptoms worse. I've run into a number of patients convinced that they had the disease; they didn't. Go see an infectious disease specialist and quit guessing.

 

[kroozer_*]

One of my brothers has Lymes disease. he has to take meds for pretty much the rest of his life. Put him in the hospital a few times as well.

After time and treatment, symptoms reside but you will more than likely still have the disease.

If ya got the money, see a REAL doc as negrogesic said

 

[laurengotdatfire]

^^ so right. Reading about it has made me feel so much worse about how I feel, though I didn't think that was possible.
I will be seeing a doctor...whenever I get insurance which who knows what that will be. I'm just scared that if I do have it I'll have to be on medication forever. I'm so scared of that. And also I have been around many many animals and ticks inside of the house, so I'm really terrified.

 

[Cloud N9nE]

This makes me not take life for grented

 

[shith3ad]

i would also check into changing your diet and having your house checked for mold.....it could be almost anything

 

[LivingInTheMoment]

QUOTE: >>((( No one has been able to find a medical cause to my pain and suffering other than hypochondria.=I have been to an endocrinologist, gastroenterologist, gynecologist, and GP, all tests coming back normal. =I have also done my research through the internet, books, doctors, and family members (one who is a doctor out in texas and one who is a nuclear scientist in georgia))))

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^^^^
>>Am I the only one confused here??????

>>You have already being everywhere-as in doctors and specialists and had tests everywhere?????


>>I felt quite confused, since I took all this into account!!..... So, please go to the doctor....

The tests you had and the specialists you've been, owed to have shown if you are suffering from any malady as the one you are afraid of-or redo them!

QUOTE: ((( I will be seeing a doctor...whenever I get insurance which who knows what that will be. I'm just scared that if I do have it I'll have to be on medication forever. I'm so scared of that. )))

^^^I am not certain, if you are scared of being plagued by the disorder for life and all those symptoms-or you are by the fact that you may be placed on medication for it, which may relieve your endless and severe combo of symptoms!!!


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[keeponkeepnon]

Op - Sorry to hear about what you're going through. Lyme disease is a real treat. You need to find yourself a Lyme Literate Doctor or LLMD as they are referred to. Within the the medical world Lyme is scoffed at more often than not and considered "not real" or implausible. As such LLMD's are few and far between but there are a number of resources available to aid in the search. A major one being The Lyme Disease Foundation.
If you do in fact have it there is something like a 60% chance you've acquired a co infection as well. Make sure your doctor does testing for this. As for the Lyme the most up to date protocol follows a 4 month regimen of either Amoxicillin in mega doses + Probenecid or Doxycycline.
I reread your post with regard to the insurance hmmm. In the meantime try to get lots of supplements in you ie. primarily magnesium, vitamin d, and vitamin c, and B complex. Going back to the insurance there is a really good community on mdjunction, perhaps you could speak with people there for advice.
Having been diagnosed in the last 6 months, I totally feel your pain. If you've got any questions feel free to ask! Best of luck to you.

 

[laurengotdatfire]

Shit; I have experimented with the diet over the years and it seemed to help some of my irritable bowel syndrome symptoms and acid reflux (a vegetable and fruit only diet, with supplements was the only one that did essentially anything...I think the carbs get me) but it wasn't significant enough relief to stop eating the only things my stomach can handle some days when I feel really bad but get forced to eat.
The mold thing sounds very plausible, even dating back to when I was a child. I will look into that very shortly. Thank you!

Living; thank you for taking all I wrote into consideration. I am also confused because, as I wrote, I HAVE seen many specialists who don't know which direction to go with me because they can't find anything TOO abnormal about my test results and think I'm making this up since they've never heard of someone with such problems! My endocrinologist jokingly suggested a phsychiatrist. I took that to offense because I KNOW I am not crazy, though sometimes I wonder...I just know my feelings are caused by my brain and I FEEL my body attacking itself. It really sucks terribly and makes me lose faith in doctors, really. My uncle says if I really do feel like this and I don't have lyme disease, I either have multiple diseases or I'm just mental lol. I will take the latter if I don't have this, since I have been to a specialist for each of the most severe daily symptoms I deal with several times over to try and find out the issue. I have an uncalled for phobia of swallowing medicine and that's why I really dread having this, other than the fact of getting some relief. If you can help me not be confused, please please please do so!

Keep; thank you for not just knocking this, I have a stronggg gutteral feeling about this, but I'd like to know... what do you feel daily? Or what did you used to, before being diagnosed and treated? I've been feeling this way for almost a decade, since I can remember. It is a living hell!!! If I have Lyme disease I know I've contracted something else because I am always sick. I also have had HPV for 5 years and it won't cure itself, leading to lots of cancerous tissue build-up in my cervix and soo many procedures. GYN doesn't understand why or what would cause it to stay this long. I also contract every kind of infection under the sun regularly. Yeast, bv, sinus, ear, throat....but the weird thing is, I get prescribed medicine, I take it (blehh) for the correct ammount of time, I am cleared of the infection and WHAT DO YA KNOW my symptoms persist...umm...forever. No joke. I'll have good days where my symptoms aren't terrible enough to incapacitate me but that's just about it. NO ONE and I repeat, NO one understands or comprehends why I am in bed all day more days than not, because I can not face the world. I have given up completely on "being sick" and going to the doctor because of it. I'd be in debt if I went every time I felt like I was gonna die lol. Litterally gonna die. I know you know how this feels. Please share!!!

Note: a few more of my symptoms I constantly have that I forgot to post are as follows: loss of muscle mass in face and limbs, extreme burning or cold sensation in random places on body that does not match temperature in room, clicking cracking or creaking of every joint when moved, difficulty in judgement when speaking, not being able to hold your words back and interrupting without noticing you are speaking or adding to a conversation long after its over, intense and misplaced guilt about just about everything, reversing my letters when speaking ("Let's so to the gore!" a lot has been passed off as just being "airheaded") trouble concentrating, STUTTERING, feeling a loss of competence, sudden pain within each tooth, severe unexplained weight loss (over 50 lbs over a course of 5 or so months, no diet change or excersize) EXTREMELY bloated belly...people just assume I'm pregnant by now..they used to ask but it looks "obvious" now, rectal muscle spasms and bowel cramping during sleep with the feeling of urgently needing to defecate but not being able to, misjudgement of doors walls or objects when reaching for them, heightened response to alcohol, very intense sound sensitivity, essentially *everything* sensitivity.

That's not all, folks! I could go on forever. Not even joking. Believe me or don't, man. I'm starting to accept that I'm crazy lol honestly.
I'd also like to add that I have bene having all of these symptoms and complaining about them to my family parents friends boyfriend, since I was about 10 years old...WAY before I ever even heard of Lyme Disease (which was recently). I read it and had a revelation because that is identical to how I feel.

 

[laurengotdatfire]

This makes me not take life for grented

For years I assumed everyone must feel as weird and bad as me all the time until I got an answer of "what the fuck?!" every single time to all my "do you ever feel like..." questions to my friends and family over the years. Reading about this Syndrome has made me realize I'm not just crazy and other people feel like me...but that it is NOT normal to say "do you ever feel like there's a stream inside of your head that makes your brain want to explode?" lol! Maybe I can't word it right...OH YEAH, that's another symptom of Lyme (bad word choice). ?! Coincidence?

P.s. I've been called "autistic with no medical cause" by my uncle as a joke before, please everyone search about the connection between Lyme and Autism. Thanks everyone so much for reading this

 

[Bardeaux]

Have you ever had the trademark lyme rash? It usually occurs just after being infected.

I had two of them at one time about 7-8 years ago and didnt know what it was until recently. I havent been checked out by a doctor or anything like that but from what Ive read these bullseye shaped rashes are caused only by lymes. This would explain alot concerning my anxiety, headaches, vertigo ect, which I always assumed was normal. I'm 5'11 and weigh about 125 lbs no matter what my diet. I find myself permanently depressed and unsocial. I should probably get tested when I get some money/insurance.

 

[RhythmSpring]

I've been diagnosed with lyme and babesia (a co-infection). Some fun facts:

I was first diagnosed with rheumatoid arthritis. I am 20. Be suspicious.

They put me on methotrexate, typical treatment for RA. No effect.

Lots of other symptoms: spiking fever, chills, fatigue, morning stiffness, mental fog.

I was tested for lyme three times (Western Blot), and all three came back negative. I was tested again recently, and I tested strongly positive for lyme and that other parasite. Tests are NOT reliable. The only way to be sure is to treat and observe results.

Am I the only lyme patient that has experienced arthritis-like symptoms?

 

[Z Y G G Y]

Have u considered gluten intolerance or sensitivity. Sometimes even a blood test can't diagnose it, only a stomach tissue biopsy. That's why possibly the veggie and fruit diet worked cuz it doesn't contain gluten only some grains do(wheat, barley, rye, kamut, and spelt). Because ur stomach tissue is destroyed u will have gastro issues and over times since ur body is not getting nutrients it's like starvation so every system in your body can get sick.

It's easy to try it out w/o going to the doctor. Simply remove gluten outta ur diet. U'll have to do it for a while to see results, enough for the stomach tissue to heal. Several weeks at least.

It really won't hurt for u to try it and since u don't have insurance u can find w/o a doctor. IF it works u have lots to gain.

There is tons of stuff u can eat on this diet. By removing gluten u r not taking away much nutritious food. Only bread, cakes, most processed food, flour, pasta...the removal of which can be good anyway for you since u r sick. U can eat veggies, fruit, meat, rice, milk and milk products, cheese...tons of stuff that's good for u.
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On another note (since the above is only a suggestion u might actually have Lyme d) going to the doctor w/o insurance isn't that costly. It will probably cost u less than getting insurance. If u don't have insurance through work already, it is very costly per month, especially if they find that u have had a history of all this unexplained stuff. So instead of waiting around for possible insurance in the future, I would take the money u would put into insurance and go see a doc. U can find a doc for $150 per visit and the test will be a couple hundred probably. Have ur family help u, ur bf, save $$ if u have to but go as soon as possible. Don't wait until u get insurance. Cuz every month u wait more damage is possibly done to your body. We live in a country that has a fucked up health system. Insurance is totally fucked up sometimes, it is attached to work whcih makes no sense at all. My husbands previous insurance had all these things about if u had a disease within the last 6 months they wouldn't cover any of it, so what about people w/ chronic diseases and job loss, they are shit out of luck.

If u have absolutely no money for the doctor, then every county has a health clinic which is mostly free with some more expensive stuff being highly subsidized. U usually have to wait a long time to see a doc and it is up to them whether u get more tests. U can give this a try. U have nothing to lose and a lot to gain. I'm pretty sure that they would at least do the lyme test for free. That would mean great savings. If u want PM me what county u live in and I'll try to research some info for u.

Seriously, at this point, since u r this bad I would start begging everyone that I know to help out for your Lyme disease test (if the free clinic is out of question) and possible treatment. Ur quality of life is on the line here. I have only one life and u need to do everything to live a normal life.

I don't think u r crazy. I really think there is some physical reason for your pain and suffering. And u need to do everything to find what it is and keep looking until u find it so matter how long it takes u.