Discussions By Condition: I cannot get a diagnosis.

Lyme?

Posted In: I cannot get a diagnosis. 37 Replies
  • Posted By: Michele611
  • June 4, 2008
  • 04:47 AM

Hello everyone, I am a 22 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. In November of 2006, I experienced my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nauseas, dizzy, and became extremely weak. I called 911 and was taken to the hospital, being released later that day with "anxiety". I didn't think anything of it, and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 10 month journey began. What started off as these random episodes has turned my life into a living nightmare, so much as that I am considering withdrawing from school. These episodes have turned to start resembling seizures (I have severse jerking of my limbs), but do not fall into the common criteria for a seizure. From November until now, getting worse with each month, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. I have recently pieced together that these episodes occur only 24-48 hours after alcohol use, and since I have stopped drinking, the episodes have stopped. However, the misery that I feel everyday has only gotten worse with time. Although I was tested for Lyme by my Neurologist back in November and had a spinal tap this past July to which both were negative, I FINALLY tested positive 2 weeks ago when I went to an infectious disease doctor. Although my ELISA, PCR and Western Blot iGg test came back negative for Lyme, my Western Blot iGm test came back positive. This doctor still refused to put me on anti-biotics and insisted that I come back in a month to re-test. My mom went to a Lyme Disease Association Forum out in Riverhead and researched a bunch of ILADS doctors considering my infectious disease doctor was of no help. I have recently gone to an ILADS doctor who took a series of bloodwork to be sent to igenex, but it won't be back until next week. I feel so confident that I have Lyme due to the uncanny similarities of my symptoms although I never noticed a rash, but are looking for any reassurance as to whether anyone else has had some of my symtpoms...here goes the list (I might be here for a whilehttp://www.mdjunction.com/components/com_joomlaboard/emoticons/tongue.png )


Everyday Symptoms:
-CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right)
-Visual disturbances (floaters, flashes, shaky vision, peripheral shadows, what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes, get worse after driving distances iI guess from focusing)
-Ringing, pulsing in ear
-Feeling the need to "pop" my ears, pressure
-Uncontrollable muscle spasms (all over body)
-Extreme eye twitch in upper eyelid of my left eye
-Creaking/cracking in the base of my skull/neck that is getting worse with time
-Dizziness/the "spins" sensation
-Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)
-Throbbing/pulsing sensation in my head/neck/face/stomach(it feels like I can feel my pulse in my brain)
-Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake)
-Increasingly worse heart palpitations that have been recorded by my cardiologist
-Sensation when I'm laying down as if I am rocking on a boat
-Body rocking (my body actually rocks back and forth involuntarily on occasion)
-CONSTANT FATIGUE ALL DAY, EVERY DAY
-Inability to fall asleep at night
-Body weakness/heaviness
-Irregular menstral cycle
-Sudden muscle jerks/movements
-Loss of balance/tip over while walking/walk into things
-Vibration sensation in my feet
-Feeling as if I can't take a satisfying, deep breath
-Loss of energy
-The chills
-Pressure and sometimes pain in my knees, hips
-Slowed processing of information
-Inability to keep concentration
-Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent and sometimes constant dull pain
--I'm sure many more that I am forgetting

I have also come to the conclusion that after alcohol usage these symptoms come out HORRIBLY. The next day after drinking alcohol, not even if it's just a few drinks, I feel fine for a few hours but then all of a sudden feel as if I'm DYINGGGG. I cannot even descriube the sensations that my both goes through, almost as if a venom is traveling through my blood. Dying is the only description that justifies the magnitiude of the way I feel.



I must add that all of this has lead to anxiety and depression which has only made matters that much worse. I do take .25mg Xanex when I feel very sick and although I become relaxed, my symptoms do not decrease. I never have the desire to do anything anymore and I lay around all day because of how sick I feel. I have been on antibiotics for Lyme including IV rocephin for a month, but have been on antibiotics for 9 months total with little to no improvement.
I need help...I feel like I have no where to turn and my parents feel so helpless. I have had every test imaginable from a colonoscopy to MRI's, MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 10 months have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help eachother and offer advice and consolation and hope that this will turn out positive for me http://www.mdjunction.com/components/com_joomlaboard/emoticons/smile.png Thank you for your time and please feel free to contact me!http://www.mdjunction.com/components/com_joomlaboard/emoticons/cool.png

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37 Replies:

  • WOW!!! CONGRADULATIONS TO YOU AND YOUR MOM FOR INSISTING !!!Sure you have lyme, and i'm so happy you did not listen to this doctor. Ok, first here is a link that prove that Infectious doctor don't treat lyme properly: show it to your mom!http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284Things will change! Anyway, if this ID would have treat you he would have done only for a months and with all your symptoms, you will need a lot of time to recover.Ok, the other thing, Is the doctor you saw is a LLMD? A real lyme doctor? Cause even an igenex test can come back negative (and more chance cause you took abx) but he can do a clinical diagnosis cause he can't doubt with all your symtoms. What did he told u??And did u also test for co-infections???Here is the name of a forum where you'll can check if you saw a good doctor and or ask for another one in cas, and also, speak with people who understand you. http://flash.lymenet.org/ubb/ultimatebb.phpI am 24, live in Quebec, Canada, and have all your symtoms and have lyme and co infections. You're lucky, here theres no LLMD, all crazy lier infectious dr who deny chronic lyme. So people go in USA, or other province in Canada. You have chronic lyme, so you will have to be patient, very patient. You'll need years of abx, like me, but we'll kill this!!!I don't understand why you say that you had 9 months of abx, for what exactly??I'M very happy that you did not believe this ID and your mom believe in lyme, you are lucky...But now, let me give you advice if the LLMD did not told u:No alcohol, no sugar, no milk, no white pastas or rice, no juice, no sugar fruit..Apple and some others are ok, but all this is for lyme and yeast, when tou have lyme, you have yeast, and abx bring the level of yeast higher so you must balance...Now, you must put all the chance on your side, like me, and will fight it! You will fight it!But there's a long way to go, and im also very afraid...ILL write to you at what doesn't seem like a mail but i'll see, and it's normal you don't remember a rash or a tick, 30 % does.And again, if your test is negative, doesn't mean you have lyme and if it is a good LLMD , he's suppose to know it, you have lyme...And it's a good thing you believe it.A big hug xx Im with you! :)Fannie
    Fannou 111 Replies Flag this Response
  • Hi again!!I clicked on what i think was a post but it was just an emoticone face!!!What did you mean by feel free to contact me ??If you want to chatt with me, leave me your adress, we are almost the same age and the same condition...I would very appreciate to talk with u!!!You are not alone and i feel exactly as you feel...You have lyme tell your parents not doubting it...You will have to be strong like me, it's not a question of weeks, months, but years...but im a month abx and feel a little little bit better...so there's hope! Are u living at your parent's place??Ok if you want to give me your mail adress we'll can talk more if you want..Bye! Don't give up...!P"S" I also feel like in a boat when im in my bed, crazy!
    Fannou 111 Replies Flag this Response
  • I'm a 51 year old guy who went to Illinois in April 2008 to hunt mushrooms...A few days after I came home I found a tick dug in under my armpit...I pulled him off and noticed 2 red welts ..One where the tick bit me and one about 3 inches below...7 weeks later they are still there and itchy although I've applied Triamcinolone Acetonide cream every day...I also developed a horrible cold which after 6 weeks is still in my chest...I go to bed tired and wake up tired..I feel like a zombie...My head feels numb and floaty..I get nausea which feels like concussion without the headache..I don't sleep very long...My stomach hurts..I feel worse at night...I've taken antibiotics...Septra...Doxycycline..Avelox...I also had a chest Xray...I have also experienced the body vibrations ... I make myself depressed thinking I have cancer, aids, or some other terrible ailment...I work for myself and have missed much work because I can't take the heat with this feeling ...I am miserable...
    Badgreek 4 Replies Flag this Response
  • Listen, if you write in this topo, it is cause you know you have lyme. You don't have aids, you have lyme. You were bitten by ticks and had the EM.You said you had doxy, is it for lyme?? Now you know what to do. You must have co infections and lyme. You must find a LLMD dr go on lymenet. The adress is right up in the answer i gave to Michele. Ask them help in "Seeking a doctor"You have to test for lyme and co infections at Igenex, fry labs...The LLMD will know. You'll have to pay...No choice. Please don't waist your time you have lyme, you were bitten and you are sick come on go !! You will heal before us...Go ahead!!!Look at the link i gave to Michele and please don't waist your time or you will have all the symptoms...www.canlyme.com (symptoms and other infos) http://www.openeyepictures.com/underourskin/uos_background.htmlBetter trailer:http://fr.youtube.com/watch?v=sxWgS0XLVqwFannie
    Fannou 111 Replies Flag this Response
  • Thank you everyone for responding! I am so happy to hear that other people go through the same things that I do. However, I just realized that I didn't update that paragraph very well before I posted it. I originally posted my story on www.mdjunction.com back in September before I really bagan treatment. Since September when I was finally diagnosed after multiple tests, I have been on Doxycyclene for a month, have done an IV Rocepthin 28-day treatment in December, and have been on numerous other antibiotics like ceftin, and biaxin. I have currently been on a combo of Amoxicillin and Zithromax, which I thought was working for a while but after having a few drinks one night 3 weeks ago after not drinking since last June, set myself back bigtime. I had the biggest flare up I've ever had the next day and ended up in the Hospital. No matter how hard I try I cannot control these flare ups. I know they are not anxiety attacks. I went to the hospital when I felt myself not feeling well and it happened anyway, despite them giving me IV Valium. These "flare-ups" feel nothing short of death and I can't stand it. Since this most recent flare up, I've had a smaller one 2 times and have just felt worse than before I drank everyday since. In total, I have been on antibiotics for 9 months, and have been seeing a well-known LLMD in Mount Kisco, NY, for 9 months. I have seen little to no improvement but still keep going because I have no where else to turn. I've had so many tests done checking for cancer, aids, lupus, MS, and many more. Does anyone else have these flare-ups like I describe because they are only adding to the reasons I doubt my Lyme. I have not read anything about other people feeling this way when they get one so if anyone has...PLEASE let me know. Thanks for all of your helpful information...I hope you all feel better :) -Michele
    Michele611 8 Replies Flag this Response
  • Thanx..I had to cancel a diving trip because i FEEL TERRIBLE...I drink coffee in the morning and it charges me up for a few hours but then it's downhill the rest of the day...A doctor I do work for gave me a script for a 3 day regiment of Doxy and said that it should take care of any tic diseases but he's not a Lyme expert..I'll go to theses sites...Pat:(
    Badgreek 4 Replies Flag this Response
  • Ok, Pat!Go to nthese sites! Don't lose time!!And no more coffee, alcool, sugar, white pastas, rice, and if possible, no milk. You have lyme, you will have to be patient man cause it is not gonna leave like this ok. So now, please, follow this diet, rest, and i think you'll have to stp working in this state. You have to heal now...Hope there is money government help you can receive,...And hope you have some money for a lyme specialist and fr tests, but you will heal...Give news ok!f.
    Fannou 111 Replies Flag this Response
  • Michele!Your story is very mixed up!So at the beginning when you toldyou were waiting for lyme results, it is 9 monts ago????What was the results?? Lyme and do you have co infections???Lyme is really hard and long to kill and i can't believe you did drink alcohol???My god! For sure you feel worst now...Mochele i was a big drinker and party girl before being sick, but you must forget it to recover, you are sick, for sure you have lyme and it can take YEARS to leave, you have chronic lyme, but if u drink with your lyme, and abx! No it doesn't work Michele, sorry but if i know you wish to be normal, i cry everyday because of my state and my life in bed and coach, but you must help yourself to kill bugs, and what you did is totally out of help!!!No alcohol, no sugar, no milk, no white pastas and rice, no fruit juice...You have bacteria in your body!!!Did you see what looks lyme??Look at underourskin: http://fr.youtube.com/watch?v=sxWgS0XLVqwi have these flare ups and i dont drink! Did you test positive for co-infection??Listen Michele, all your symptoms are lyme and i repeat, lyme is long to leave but you make it stay longer if you drink...Go join lymenet, you need advice!Fannie
    Fannou 111 Replies Flag this Response
  • but after having a few drinks one night 3 weeks ago after not drinking since last June, set myself back bigtime. I had the biggest flare up I've ever had the next day and ended up in the Hospital. No matter how hard I try I cannot control these flare ups. I know they are not anxiety attacks. I went to the hospital when I felt myself not feeling well and it happened anyway, despite them giving me IV Valium. These "flare-ups" feel nothing short of death and I can't stand it. Since this most recent flare up, I've had a smaller one 2 times and have just felt worse than before I drank everyday since. In total, I have been on antibiotics for 9 months, and have been seeing a well-known LLMD in Mount Kisco, NY, for 9 months. I have seen little to no improvement but still keep going because I have no where else to turn. I've had so many tests done checking for cancer, aids, lupus, MS, and many more. Does anyone else have these flare-ups like I describe because they are only adding to the reasons I doubt my Lyme. I have not read anything about other people feeling this way when they get one so if anyone has...PLEASE let me know. Maybe it's just the lyme??? but another possibility is that you could of got Chronic fatigue immunity dysfuncton syndrome.. from the lyme... so could now have two different conditons. Studies have shown that 10% of lyme cases (esp chronic lyme).. develop into CFIDS also called chronic fatigue syndrome (in CFIDS, studies are showing many genetic changes have happened..so ones genes are affected). With CFIDS.. there is alcohol intollerance too.. it can flare one right up (relapsing) .. and has possiblity of permanently worsening ones state. So if it's just the lyme which is the issue.. or both lyme and CFS.. well avoid that alcohol!!
    taniaaust1 2267 Replies Flag this Response
  • Most CFS is lyme. And FM, too.
    Anonymous 42789 Replies Flag this Response
  • WoW Ralph!! Thanks and welcome!!!Lyme victim too??I think Tania really believe in her CFS diagnosis, there is causes Tania, and i think you should look at lyme net too to get tested...Fannie
    Fannou 111 Replies Flag this Response
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  • Yes, I have it too. And am a LLDC - Lyme Literate Doctor of Chiropractic. Am having some good results with some patients, too. I am not too thrilled with Lymenet administration. I have emailed them about 4 times with no reply. I got tossed after starting some threads that were about alternatives to drugs. Some other posters deliberately put up antagonizing posts and I replied consertavitely. They have not replied to my questions as to why I was chucked. I use a BIM - bioelectrical impedence measurement - machine. It measures electrical patterns of organs, functions, etc.
    Anonymous 42789 Replies Flag this Response
  • Most CFS is lyme. And FM, too.How can u say that.........many cases of CFS and FM in the UK and Lyme is certainly not the cause...:rolleyes:...... Please explain ur reasoning ?
    Tootsie 628 Replies Flag this Response
  • Tootsie - in my ongoing education, both personal and professional, I learn some things I never expected. Having some email friends in England, I have some good exposure to what has and is going on. Traditional testing for lyme is very poor. Labs I trust are Igenex and Bowen. There is another way to test that is apparently good but that I have little exposure to. There are many tests that are used that say you do not have it when you really do. ME, FM and CFS are generally catch all diagnoses - meaning something must be named, they won't say they do not know for sure so they throw it into the ME CFS and FM box. IMO and experience about 90% of FM and CFS is lyme. This is from sources that work in the field and that I trust.A poster at another board had a CFS diagnosis for 15 years until she was properly tested for lyme. She gave me some of these figures as she explored greatly. One day I asked if she felt if there was a connection between lyme and autism and 2 months later she forwarded a site to me about lyme induced autism. The current estimate on the connection is that 25 to 30% of autism is caused by lyme. I have personally studied with a RN from northeast PA that said most RA, MS, ALS, FM, CfS and more is actually lyme. I have confirmed that with some patients using a special computer to test with. I am not speculating, just putting out current experience and information.As you may be aware that there is so much misinformation out there, and lots of it is from some of our "official" US studies and government agencies. And lots of politics and money. Many professionals apparently believe what the government spits out is always true. Many health pros probably fear what will come up legally if they admit they have been wrong. And pride, and ego and on and on. My two kids and I believe greatly in Steve Earle's line"Whatever you do, be a seeker"I have always wanted to know the real why. Many health pros do not feel that way and think covering symptoms with drugs or supplements is actually health care. I do not think or practice that way at all.
    Anonymous 42789 Replies Flag this Response
  • Good Ralph!I'm so sad of all this everyday.People very believe they have fm and cfs for unknown cause or something in brain that make them feel more the pain....I didn't believe it at all after my fibro diagnosis that is why i went see that specialist who find the causes of these diagnosis...How can some believe that they can start feeling like this without any causes? Because the drs will convince you by their ignorance....The majority don't know about lyme in CFS or FM, some doubt but won't say this, they know how dangerous it is...Heavy metals can also be causes for some. But lyme is the most...I also heard about autism reliate to lyme...But mercury is also a cause. People don,t know about it...They want to believe these sickness is there and tHat's it, and whatever the cause....Things will have to change...And i encourage all the fm and CFS to look at the links i give in my post...It could save your life...Lyme is the biggest immitator.Ralph, what do you do to treat your lyme ? You doN,t use drugs? And as a chiro..what can u do???Thanks for your support, they must know we are here to help..FannieFannie
    Fannou 111 Replies Flag this Response
  • Interesting but scary stuff..That you tube video scared the crap outta me...Anyway thanx for all the info...I'm going to find a reputable place around Gainesville, Florida where I can get tested....:o
    Badgreek 4 Replies Flag this Response
  • Straight answer Ralph are u saying that all the people that have been diagnosed with CFS & FM (even if u call these illnesses a throw in) in the UK have lyme ? Do u also agree with some members here who target everybody & actually diagnose their illnesses as lyme.....do u think this behaviour appropriate ? Would u as a doctor diagnose anyones illness in this manner ? Would u diagnose someone reading a list of their symptoms via this site, without tests, ignoring all other possible causes.... with lyme ? A thing we are all on here trying to do is "Seek" & also help along the way. I would not dream of hitting everyone here telling them they had TN just because i do. The people doing this as far as i am concerned are doing Lyme as an illness a great injustice......they are thowing in links to try to justify there behaviour......information does not prove wisdom ! These same people seem to think no one suffers only them. And everyone else who is trying to get help with there own problems are having to fend them off. Quite honestly I for one am sick of them as many others are. Now this is time to set the record straight once & for all ! I look forward to ur reply.
    Tootsie 628 Replies Flag this Response
  • Tootsie, that is enough!!!You bitched me in the other mail, here tell i think and bLaze think nobody suffer as we suffer....??????Sorry, i am not diagnosing anyone, i tell my opinion, give links, and i do not tell anyone they might have lyme...Why do u think im doing this??? Cause i think nobody suffer as i am ??Sorry, it does not work.If i am here, it is cause i know people suffer as i did and does, and i want to help them, So please, what is your problem??What is the problem we give these links and opinion???As i said before, the forum is called" i cant get a diagnosis" This is the strory of lyme victims, it was also mine before having a fm diagnosis.I have lyme, not fm.That is why so many people are here with ehat seems to be lyme disease.When it is thiroid problems, or other easy stuff to find they do.With lyme, they don't.So i ask u once again, t leave me alone.I am a big heart for giving my energy here to help other, my boyfriend even don,t understand why i do in my state....WhY???Cause i know what it is to be trated of"psychosomatic" or to have so many symptoms that you just think you are crazy or dying....So leave me alone!!!Badgreek, hope you will find the help you deserve and i wish you all the luck and health you deserve to find again too !!Fannie xox
    Fannou 111 Replies Flag this Response
  • My first sentence, error wanted to say i do not tell EVERYONE (im french)
    Fannou 111 Replies Flag this Response
  • Tootsie, that is enough!!! You bitched me in the other mail, here tell i think and bLaze think nobody suffer as we suffer....?????? Sorry, i am not diagnosing anyone, i tell my opinion, give links, and i do not tell anyone they might have lyme... Why do u think im doing this??? Cause i think nobody suffer as i am ??Sorry, it does not work.If i am here, it is cause i know people suffer as i did and does, and i want to help them, So please, what is your problem??What is the problem we give these links and opinion??? As i said before, the forum is called" i cant get a diagnosis" This is the strory of lyme victims, it was also mine before having a fm diagnosis.I have lyme, not fm.That is why so many people are here with ehat seems to be lyme disease.When it is thiroid problems, or other easy stuff to find they do.With lyme, they don't.So i ask u once again, t leave me alone.I am a big heart for giving my energy here to help other, my boyfriend even don,t understand why i do in my state....WhY??? Cause i know what it is to be trated of"psychosomatic" or to have so many symptoms that you just think you are crazy or dying.... So leave me alone!!! Badgreek, hope you will find the help you deserve and i wish you all the luck and health you deserve to find again too !! Fannie xox I have asked Ralph reasonable questions & i await his reply, if u think this is about you well then if the cap fits wear it. You have diagnosed people with Lyme many times, these are your words "U HAVE LYME" ! there are many many illnesses apart from Lyme which also have the same symptoms......as it is the human body we are talking about, well, think about it there are only so many symptoms a body can have so all illnesses will appear as such. You think u are helping well maybe u will help one somewhere along the line but basically u are totally patronising, it takes wisdom to dispher information & that my dear u do not have. Now don't dish it out if u cant take it back !:eek:
    Tootsie 628 Replies Flag this Response
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