My Story About Lyme

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VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/27/2010 3:53 PM (GMT -6)   

 Hi All :)

 

 

I am new to the group and so happy I found it.. I joined in November of 2009 but haven't actually written anything of researched any lyme issues I had on this site until now... I am 23years old and was diagnosed with lyme disease in September of 2009 - My journey has been rough though I have to say.  My first initial reactions or symptoms to knowing just something isn't right with my body was in June 2009 - after I came back from Mexico with my significant other.  The last day we were in Mexico (Playa del carmen) I got severely sick from eating ahi tuna at a very pricey restaurant .. goes to show you eh? ... any how - that night after a couple bights and two glasses of wine .. i started to feel very sick.. I felt like I was going to faint or pass out and just started to feel very awful... I immediately went back to our resort and tried to sleep I ended up staying up all night and vomiting etc. etc. I had tremors more than ever and could not stop puking and had really bad diarrhea... I went to the emergency center in Mexico .. which was a HORRIBLE experience .. I didn't know what was wrong with me I honestly thought I was dying.. any way the "doctor" gave me cypro and told me that obv. it was a mercury reaction from the raw fish... that day since I was up from 3am - I had a flight out scheduled around 11am ... I felt better but not 100% from the cypro ...

 

Skipping to July - after I came back from Mexico and had such a terrible experience the last day I was there I went to my doctor and had my blood, stool ,urine tested.... All came back normal.. I stopped taking cypro... Although through the months' July-late August I had about 4 incidents of symptoms that just didn't seem right... during these incidents out of nowhere I would start to have heart palpitations ... tremors ... lightheadedness and just felt very very off.. .I felt like my brain was floating ! That is the only word that can best describe... and my vision was fine but I couldn't look around too much because I just felt dizzy etc. now the first incident after my trip from Mexico was out of good cause .. I was out with my girlfriends and we ended up at this bar... this bar was a glass building so if you wer afraid of heights.. you should not have gone.. although I wasn't...anyway this building was 45 floors.. we were on the 45th and then we walked up to the rooftop ... as soon as I walk out and felt the air hit me .. .BOOM I fellt like I was having vertigo.. my vision changed and I started to feel lightheaded and dizzy and my heart was beating fast etc. my friends were freaking out and got me a bottled water.. they suggested for me to relax and take a shot! Iwas like um nno thanks... I couldn't imagine drinking alcohol at that point.. after like 20 minutes I started to feel a little better as far as the dizziness although my brain and the way I felt was just not right.. I stuck to water the hole night and ended up going home early.... further more - 3 other incidents like this happened to me at night while I was out ... Heart Palpitations, Light headedness, Headaches, little foggy and just felt weird all summer like I was possessed or something! I honestly was getting bad thoughts and learned to control everything later on although it took me 3 doctors - 20 blood tests... urine... stool etc. etc. I went to so many doctors that had NO clue what to diagnose me with and told me I am having panic attacks / anxiety... one told me that I have low blood sugar... another told me that my serotonin levels are low... LOL RIGHT DOCTORS..... Listen I knwo my body as do we all and I KNOW that something is NOT  right.. so I was getting so upset at this point where I started to feel SO depressed because I didn’t know what was wrong with me and NO one out there knew anything ... I went to the emergency room 3 times with tremors and light headed ness like I was going to die.. I have been freaked out m depressed the whole summer until September... FINALLY my family doc. told me that he researched my blood more ... and found I tested early positive for lyme (yea thanks doc! now you tell me) so he told me that I need to start doxycycline right away... Now mind you this same doctor who is my primary - told me the month before that I had a stomach virus prob. and to drink more water and he prescribed me pills that killed this virus (mostly for any worms or infectious insects that are in foods) and gave me these other pills for depression/anxiety that melt in your mouth... he didn't even specify what that was .. he just told me to take this when I don't have water around me!?? *** any way so I increased my water I took the pills for the virus not the others and NOW a month later it's like oh, you have lyme so take this .. I was so upset - I dropped him as a primary and went on a search for someone else... now in September I started the doxy ater reading up on this drug... it's a antibiotic so at that point I figured why not take it .. I took amonths supply... I went to 2 others doctors that run blood test etc. and found nothing again my life was miserable because I did not believe I had lyme.. I am not an outside person I do not have a dog and I did not get a bulls eye etc. so I had no idea what was going on and I didn't want to believe I had lyme... after checking out this other doctor - she was very knowlegable and was very well educated although - she said I don't have lyme and I have some ulcer type bacteria .. can you imagine what was going through my mind when she told me this ?? so I dropped her too.. finally  after taking the antibiotics I felt a lot better...

Sorry for me rambling on about this journey although it has been and there is so much more to say although what I can tell you til now from my experience is that LYME sucks .. but you have to remember that its just a disease and a very common one. You have to believe that WE ALL will be cured .. If you give up hope and determination you will never succeed.  I have been so miserable and I have wanted to believe that I am never going to be cured and no one is out there to help me but there is . I have been on Doxy for about 4 weeks now - this is my second cycle - and hopefully I am going to be ok ... although I have come across many people with my type of symptoms - which I learned as well that all symptoms are different for each individual- I have met someone that had the same symptoms as me and referred me to a doctor that I already had an appointment for after doing some research on the internet I found a great doctor in CT that has been helping me fight this virus.. although it is tough still... it is really hard knowing the life I had before - so free , healthy etc. and the life I have temporarily now - which is the key word for all of us TEMPORARY... you have to bee strong... it sucks because my body has gone through so many antibiotics and my emotions and pockets have been in cahoots .. although the only thing to do now is to focus on treating and figuring out how to fully kick out this virus...

 

Sorry if my story is all over the place but that is how my life is... and I have gone through SO much in 7 months that I am sure some can relate to... it's a hard thing to go through alone and I am happy I can read and get feed back on my story.. .ALso if anyone has any questions please feel free to ask!


mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/27/2010 4:40 PM (GMT -6)   
Hi VStrength, my post "Thanks to you all", was my first post too - it feels better to share it don't you think?

I once read that this disease "is a marathon and not a sprint", so stay strong and be prepare for a long haul. I've been on ABX for 6 months now and apart from the horrendous mental symptoms, which I get intermittently, I still get some dibilitating physical symptoms. I never know how I'm going to feel from day to day and my LLMD says to be prepared for maybe two years on the ABX, I suspect that others have been on them alot longer.

I don't think you could have found a better place to learn about LD, the members here are very smart. I hope that your recovery is a quick one from this magician like bacteria.

Good luck. Miki

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 1/27/2010 5:00 PM (GMT -6)   
Hi VStrength,

Welcome to the forum! I am sorry you are suffering from this illness but am glad you now have a doc to treat you. You seem to have the "right" attitude-----you are determined to beat this---That is great! I wish you all the best for a speedy recovery.

bablymers mom

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 1/27/2010 5:48 PM (GMT -6)   
VStrength,
I am sorry you have to go through so much, but I'd like correct you for one small thing. As far as I've read, lyme is caused by bacteria, not virus. Secondly if you lyme, then CT or RI is a good state to be in, cuz in those states doctors can treat lyme without the fear of prosecution from insurance companies.
Just find yourself a good LLMD in CT. (some of the best LLMD are from CT as the disease was first found there, and that state is endemic).

Be Well,
pepphell

VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/27/2010 6:05 PM (GMT -6)   
All,

Thank you so much for your replies! It has most definitily been a long haul for me and I am hoping for the best as we all are.... and yes I meant bacteria :) ty.. got caught up in my story! sometimes I feel like it's a infectuous virus that will never leave. I have done cleanses etc and haven't seen any great results thus far...

I am just wondering what type of symptoms do you all suffer from ?


Again thank you so much for your heart warming replies!! :)

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/27/2010 6:14 PM (GMT -6)   
Hi VStrength,

Welcome to the forum! I am so very sorry that you had to go through all of that but glad you finally found out what was really causing all of this.

Please read the thread titled, "New To Lyme?....Start Here!." It is packed with alot of very informative information to get you started on your Lyme journey.

If you need to find a LLMD(Lyme Literate Medical Doctor), you can go to www.lymediseaseassociation.org

Another great site to read and learn about Lyme is
www.ILADS.org
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/27/2010 6:19 PM (GMT -6)   
Thank you very much...

I am actually going to therapy at the moment and scheduled to take acupuncture in a week to do something about this lyme... so hopefully I can stop thinking negatively about this disease because the is my major issue... I think negative but try and hope for the postitive...

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/27/2010 9:48 PM (GMT -6)   
Hi Vstrength-so sorry you have gone through so much. But atleast you have found out some answers. Did you say you are under the care of an LLMD? And what treatment have you had? Symptoms I suffer from are ear ringing, stabbing pains, burning feet, painful heels, neck creaking and cracking, insomnia, anxiety,and light sensitivity. I'm sure I forgot some. Hope your doctor helps get you well. Your doc is the key to your recovery as well as building your immune system.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/27/2010 10:36 PM (GMT -6)   
Hi Vstrength,
Welcome to Healingwell!! Sorry you have been dealing with this disease!! Great to have you here.
Wow what a story. I am happy to see you have a good understanding of this disease already. Be sure to read as much as possible, and be your own advocate.

Best wishes

VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/28/2010 9:52 AM (GMT -6)   
Thank you for your responses... and support! I really appreciate it! :)

it's been 7 months so far and I've had better days... I miss the days where I can go to the gym and go out and focus and just never think that this disease it destroying my body.

My symptoms since September haven't increased - they actually decreased although i still get the lightheaded feeling ... headaches .... just feel like I am going to faint .... I feel like coffee increases these symptoms? - I had so many tests done - because I felt like maybe I have a tumor or maybe I have cancer etc. I was freaking out for the longest time and when I was researching Lyme and headaches etc. I found other issues that scared me even more... that's when I decided to get a cat scan and heart ecg tests... and more blood work... which all came back normal.

Also from all the meds I was on I passed kidney stones on top of all this ... so I was freaking out even more because it's like ok, I have lyme but now I am having kidney stones now what ? What's next...

Is lyme ever really cured? and if so it's a scary thought because the disease actually gets stored in your spine and could "spark" up when your immune system isn't at it's best... almost at it's worse.. but it varies with everyone

Also - not sure who knew this - that all lyme infected people ( sounds weird ) but any one who has lyme has to be registered under the state. That's what I heard...

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/28/2010 12:46 PM (GMT -6)   
I think the only time it gets reported is when you test positive. Then that result goes to the CDC. Most of us, including me did not test positive. So we get treated by an LLMD but our case goes 'unrepoted' although we are probably as sick if not sicker than the ones that test positive. The joys of Lyme.

Hey Vstrength-glad your symptoms have not gotten worse. Are you seeing an LLMD?

VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/28/2010 12:56 PM (GMT -6)   
Oh really? - interesting..

I made an appointment to see a acupuncturist ... for healing ...

what's the difference ?

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/28/2010 1:41 PM (GMT -6)   
LLMD is a Lyme literate medical doctor. You want a doc that treats according to the ILADS guidelines. Google ILADS- you will find a ton of information. These doctors seem to be the very few that understand Lyme disease and coinfections. I am not saying a naturopath couldn't help you. Believe me- I think they are great,too. I just think it is important if you are suffering from this disease to have a doctor that understands it. A lot of the ILADS docs are super smart and have been treating Lyme for a number of years. Most focus their practice on just Lyme disease. So they have the experience. And they will also rule out everything else if you have a negative test but have symptoms. I think you tested positive so you are good with that. I think a great doctor is key to getting well. I think you should find one.

VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/28/2010 2:16 PM (GMT -6)   
Lovelabs - thank you so much for the info! I will look this up tonight...

How are you doing with your symptoms etc.?

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/28/2010 2:22 PM (GMT -6)   
I feel ok today. Tonight it may change. I never know from one day to the next how I will feel. Are you in a state where there are doctors who treat Lyme?

VStrength
New Member


Date Joined Oct 2009
Total Posts : 15
   Posted 1/28/2010 2:26 PM (GMT -6)   
yea . I hear you... I am in CT doctor that treats me is in Stamford ...

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/28/2010 2:50 PM (GMT -6)   
Maybe someone here can email you a list of Ct LLMD's, maybe make an appointment with one as it could take a few months to get in(they are in demand). Keep seeing your doctor in Stamford and then you will have an appointment if your treatment isn't working. Just a thought. Also, most LLMD's do not take insurance and are expensive. (first appt. can cost between $500-$800), BUT you usually are seen for close to 2 hours. Follow ups are usually around $300-$350 depending on who you see. Most docs will want to see you every month to 2 months. They keep a close eye on you to see how you are responding to abx, and check blood often to check for organ function while on meds. Seems expensive and wrong but as you learn more about the Lyme contraversy you will understand. Most of these docs see patients from all over the country and are in high demand. Most INS companies will allow you to submit an out of network claim and a portion of the appt cost will be refunded. Depends on your plan. Can't put a cost on your health. It was the best decision I ever made. Making slow progress but have improved. Just giving you a 'heads up' as all of this is very new to you.
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