posted
OKAY SO, I have been through HELL and back which I'm sure a lot of you have as well. SO I'll jump right into it, this is my story I am still waiting on the igenex test to come back I will find out on the 28th
but anyways, Welcome to the perfect storm-
So I was having pretty bad neck pain, I got a massage and it didn't help two months prior. but I recently (this May) went on kind of a bender with my friends, drinking and partying I had 3 days off and I am recently single so I thought why not it is really out of character for me but I just went for it.
I ended up pulling an all nighter, in the morning I realized as I was watching TV my right eye was totally BLURRY! I have had perfect 20/20 vision my whole life, I'm only 26 years old and my parents both had great vision well into their late 40s.
So that worried me a little, but I figured maybe that just is how eyesight works, maybe I had been looking at my phone too much or something. (mind you I'm right handed so that should be my strong eye) so I drove home that morning from San Diego to Orange County and went to work that night and then I got freaked out because my friend told me their friend went blind from diabetes randomly one day and I ended up in the ER.
Did some tests, everything negative no glaucoma, no brain trauma etc. Go home late that night probably around 2am and finally get some sleep. The next morning I wake up into shear PANIC! I was so anxious I thought I was going to die!
I begged my mom to bring me to the hospital (again) my hands were numb my lips numb heart pounding, ran tests everything fine a little low on potassium. went home. That week I went through panic attack after panic attack I was so uncomfortable doing anything, I could not eat to save my life I had to chase every bite with water, it was so bad at one point I couldn't even talk.
I went to therapy, took a class, got a notebook, used positive thoughts, changed my room in my house because walking into my room made me panic for some reason and the attacks went away in a week. Awesome! I knew how to stop a panic attack in a matter of 20 seconds!
The following week I worked my butt off to make up for lost time I work in a restaurant, so I worked late picked up a bunch of shifts and was working out eating good, had a whole new perspective on life! I took it as a blessing in disguise! Then I start feeling a little weird. My hands are shaking, I feel dizzy, my balance is so off I start running into everything at work and at home, and I end up in the hospital again.
They assure me I am okay, tell me its stress and send me home.
Then on June 9th, my dads birthday I had switched my usual Saturday night shift to morning so I could go out to dinner with the family. So the morning shifts are usually VERY mellow and easy.
I couldn't get through half of the shift.
I felt like I got HIT BY A BUS. I couldn't stand up for more than 15 minutes, I was hunched over, feeling just so run down and awful I am normally super woman at work, I usually have a ton of energy, and I am abnormally strong for a woman! I was worried but made it through my shift anyways.
I went to dinner with my family and they noticed something off about me, I felt very shaky and just anxious (I should be an anxiety pro by now right?) I order a rich meal and have a glass of red wine, which was stupid because it always seems to give me heartburn. (yeah I'm 26 and I always get heartburn...) We finish the meal and start talking to my dad about his friend who has MS.
I get a little freaked out about this talk because I realize I have had a few symptoms like he had in the beginning (sadly, he is now in a wheelchair) and we go home. That entire day I could NOT stop crying! I NEVER cry EVER. I had probably cried twice since 2015. So that was really strange to me.
The next day I get massive heartburn, and I start to have really bad shortness of breath, and pain. I thought I had silent reflux, and I started on omperelazole and a very bland diet of basically banana and rice. A week goes by, my shortness of breath is getting worse. I miss another week of work and spend my days crying and sitting on the couch, googling silent reflux. My GERD finally goes away after a week of no eating past 6 and bland food.
The shortness of breath stays though. I get back to work and then I start to notice my muscles are incredibly weak. Especially on my right side. I also notice that arms feel like my circulation is getting cut off constantly, even from holding shopping bags. Also I notice I have weird watery headaches and I am seriously sensitive to light.
At the mall all of the blazing lights give me eye pain and weird headaches! I try to ignore all of this in hopes that it will just go away. I keep getting worse and worse. I feel like I have absolutely no energy (IM 26 YEARS OLD!) I have to sit down all the time, work is absolute torture, I feel sick.
I feel very hot but I have no fever. My parents schedule us to get our house tented and we have a nice Airb&b that we stay in. I notice I am getting weaker and weaker, the mornings are HELL I felt like I got absolutely NO sleep and I feel like I got hit by a bus every time I wake up! Packing was horrible, and I spent most of my time googling my symptoms.
I was convinced I had ALS, or MS and I cried and cried and cried. I thought I was going to die. I felt bad for my parents because they felt so helpless, and so did I. I couldn't walk up a small hill, my vision was blurry like opening your eyes under water, and I seemed to have these weird watery kind of headaches.
I am still convinced I have MS. I start having stabbing pains in my arms and legs, and sometimes I get little pin prick feelings. I'm getting weaker and weaker. I do some research and find a lot of people who have success with a VEGAN diet! SO right away I start on a strict vegan diet excluding: Beans, gluten, & processed food.
The stabbing pains go away! But I am still very weak. I somehow recover enough to work, and I keep googling away! I made an appointment with my DR and tell him my long list of symptoms. He looks at me and says "those are very vague" and does a muscle enzyme test to see if they are breaking down. Comes back negative. Then I just start demanding every test I can think of.
I did an autoimmune panel Tested my thyroid Tested my kidneys tested for HIV Tested for anemia the list goes on and on
NEGATIVE, NEGATIVE, NEGATIVE
I start watching youtube videos and stumble upon a girl who was diagnosed with MS but happened to have LYME DISEASE!
Her story seemed like mine, I STILL had Shortness of breath, I felt like I was drowning, (I AM STILL HAVING THIS SYMPTOM) I thought I had the MS HUG. This girl said she had that exact same symptom!
SO I started looking into Lyme disease. My symptoms at this point are all over the place, they are two pages long and some are getting worse. I went to the ER about 7 times in the past few months, racking up 6k in medical bills. Everyone is telling me its stress. Here are my symptoms:
The ones with the stars are constant the others come and go: -Headaches -Jaw aches -Stabbing pains -*muscle twitches -*soreness -*Fatigue -*shaking hands -***shortness of breath (my oxygen is normal and XANEX doesn't help at all) -*jumpy eyesight, blurry vision, partial loss in one eye -foggy mind/ forgetfulness -*back & neck pain -muscle cramping -waking up feeling sick & exhausted -*dizzy/off balance/legs feeling like theyre giving out for a second -*pain in chest/pain in between shoulder and chest -*THRUSH (got rid of it with oregano oil a few times) -sores in mouth -heat intolerance -burning in palm of right hand -foot feeling like its bruised and unable to walk on it -nausea, vomiting, feeling full -pain while swallowing -***POUNDING HEART, racing after little movements like walking up stars, palpitations (saw them on monitor in the ER) -shaking hands, twitching fingers -hot flashes -VERY ITCHY -ear pressure -abdominal pain, pain in right side under ribs -dry eyes, eye pain, stabbing feeling, floaters, sore eyes. -seeing floaters -frequent UTI infections -trouble writing, jumping hands while writing -lower back spasms -trouble speaking -excessive thirst, dry mouth, dry throat -trouble swallowing -itchy scalp
I'm sure I'm missing a few too but that pretty much covers it. I am currently experiencing, joint pain in my right wrist, racing heart, palpitations, and shortness of breath.
So I started looking at everyones stories and they were all exactly like mine! I looked up a LLMD and found one, she is convinced I have LYME but we are waiting on the test. I have been to doctor after doctor nothing has come back, everyone is telling me I'm stressed and acting like I want attention or I'm crazy. I have gotten a chronic fatigue syndrome suggestion and thats it.
I felt so sick at times I would cry to my mom in bed and I would tell her "I don't think I'm going to wake up in the morning"
The diet helped a lot, I couldn't stick with the vegan because I couldn't get enough calories in a day so I started eating chicken and trout. My LLMD is also a naturopath, & integrative as well as western med.
IDK what is working right now but I went to HORRIBLE to kind of ****ty but functioning.
I walk around just fine now, I can have a normal thought for once, with out just thinking about how horrible I feel, and I can somewhat function and work.
I am taking a bunch of things she suggested (expensive but possibly working)
along with: LAURICIDIN (monolauren) Nattokinase Oregano oil stevia chlorella
I feel like the walking dead, I have lost 17 pounds, and I still don't feel myself. Everyone at work keeps telling me how skinny I am and how much weight I have lost and it just reminds me of how sick I was, and how dark of a place I was in. Everyone says I look fine but I feel horrible. I just recently watched the "under our skin" documentary last night with my mom and we are both convinced this is what I have!
***Some questions I have: How reliable is the igenex test?
Has anyone had a sudden RACING heartbeat with a normal EKG? (I tested it after walking up the stairs its at 138, and resting is around 80+)
any success stories?
thank you for reading my extremely long story, I could have made it longer but I think I'll spare you <3
[ 07-25-2017, 02:11 PM: Message edited by: alexkfiore ]
Posts: 32 | From Orange County, CA | Registered: Jul 2017
| IP: Logged |
posted
also I forgot to mention I did have an MRI everything came back good no signs of MS.
Posts: 32 | From Orange County, CA | Registered: Jul 2017
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi alexkfiorre. Welcome to lymenet.
I m so sorry you're going through this. It's called the Lyme maze. Constant doctors and tests. And you are only 26. A lot to deal with. . .
I am (was) in the food and beverage buisness, can relate to the fast-paced, multi task, stress environment you deal with. You sound like a hustler (good thing!). You stated you are an abnormally strong woman. Yes, you are ! And that's what is going to be your advantage in working your way back to health.
Do I think you have Lyme ? Yes, I do. But. . . I am not a doctor. One of the first questions my friends asked me is " How did you know you had Lyme? I said, you know because you feel like you got hit by a bus" Extreme exhaustion. Not fatigue. My last day of work ( 1year ago) I was so tired I couldn't put my work shoes on and couldn't figure out what shoe went on what foot.
You are doing everything right. You are an advocate for your health. You have a LLMD. And Igenex is the best lab we have for Lyme testing. So you ll soon have some answers and make a plan for aggressive treatment.
I have had Lyme for 4 years, 3 years undiagnosised and untreated. I research constantly and probably only know 1/10 of everything Lyme does to the human body. It's so complexed, affecting every square inch of the human terrain.
Many here at lymenet are SO knowledgable ! Feel feel to ask any questions you have. They saved my life, along with so many others. Utilize the search engine. So much information offered from past and present Lyme warriors. You are not alone !
Others will chime in with more experience than me. I just wanted to wish you well and offer you encouragement.
quote:Originally posted by Lymetoo: Alex... any chance you could go in and edit your post so we can all read it? Only a few here will be able to read those HUGE blocks of print.
It makes my head spin, so I'm not sure I can even edit it for you. (I'm a moderator)
Click on the "envelope" icon next to the date and then put some space in those huge paragraphs.
Thanks! Sounds like you need some help!
yes I did sorry!
Posts: 32 | From Orange County, CA | Registered: Jul 2017
| IP: Logged |
posted
Hi Alex....Years ago, I had many of the same symptoms as you and saw 14 various doctors and 'ologists in 3 states!
The concensus was that I was a kook; but I and my family knew otherwise so I kept on seeking answers which I found via the internet.
That was definitely a jubilant, aha moment!
You asked for success stories.....
Once I found the LLMD that I saw for 3+ years, I began recovery.
My symptoms were so convincing that he did not even wait for my test results; I was at the hospital the next day having a PICC line put in.
Long story, short....37 months of meds and I did recover. It was actually a relief to know I 'only' had Lyme after 2 years of being ill and that it was something that could be treated.
I will say that I was 100% compliant with dr's orders--no sugar, yeast, etc. I took about 35 different supplement pills a day.
Ironically, I am going through something similar now with Bartonella because of a cat bite several years ago.
But that's another story. On the path to wellness once again, though.
Hope you get some answers. I think that you will find that a few of your symptoms are anxiety-related and they should resolve once you get the relief of a diagnosis. Been there.
I have been suffering with much the same symptoms for one year. Multiple trips to ER, feel like I was dying, tachycardia and by the time I get there everything normal. Had echocardiogram and wore holter moniter. Echo ok, wide pulse range on monitor 48-150! Cardiologist thinks POTS due to lyme. Being treated by llmd 4 month with Doxy. Some improvement but not enough to return to work. I am worried I am not doing enough to kick this thing. I hope you get some answers soon.
Posts: 41 | From CA | Registered: May 2017
| IP: Logged |
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
TuTu, glad you posted the link. I wondered about the itching and dizziness in particular.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6144 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
posted
alex - would you please edit your original post (you wrote you did, but it wasn't done properly) by clicking the pencil/paper icon, making your changes, then clicking "Edit Post".
There are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
quote:Originally posted by luvmycat: Hi Alex....Years ago, I had many of the same symptoms as you and saw 14 various doctors and 'ologists in 3 states!
The concensus was that I was a kook; but I and my family knew otherwise so I kept on seeking answers which I found via the internet.
That was definitely a jubilant, aha moment!
You asked for success stories.....
Once I found the LLMD that I saw for 3+ years, I began recovery.
My symptoms were so convincing that he did not even wait for my test results; I was at the hospital the next day having a PICC line put in.
Long story, short....37 months of meds and I did recover. It was actually a relief to know I 'only' had Lyme after 2 years of being ill and that it was something that could be treated.
I will say that I was 100% compliant with dr's orders--no sugar, yeast, etc. I took about 35 different supplement pills a day.
Ironically, I am going through something similar now with Bartonella because of a cat bite several years ago.
But that's another story. On the path to wellness once again, though.
Hope you get some answers. I think that you will find that a few of your symptoms are anxiety-related and they should resolve once you get the relief of a diagnosis. Been there.
Thank you its nice to hear people recover. I hope you get well again soon its not fair to go through this twice !!
Posts: 32 | From Orange County, CA | Registered: Jul 2017
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[dizzy]](graemlins/dizzy.gif)
![[hi]](graemlins/hi.gif)
Welcome to lymenet.
Printer-friendly view of this topic