Really Need To Talk with People w/Experience

Hello Everyone,

Its been a couple of months since I had posted on this forum, and I really enjoy the sense of community this site brings, and sense of not feeling alone...lately I've been feeling pretty alone, and I need to know what I should do next. I will explain my story, and also whats been happening lately...I will warn you it may be long, but I know the people here are nice, and will help if they can.
about 2.5 years ago, during July of 2012 (I believe) I started to develop heart palpitations that just started RANDOMLY. I wondered why I had them, and what the underlying cause was. I stopped drinking coffee and soda for over a month to try and stop them, and they never did...they actually got worse. After a year of having the palpitations, I decided it was time to see a doctor. I wore a holter monitor for 24hrs, and eventually got the results back. They told me it was benign, and was just anxiety and that I have PVC's...I didn't believe them..but I moved on.
I didn't go to a doctor for a while, but again after another couple of months I really couldn't take it anymore. I decided to go to a different doctor to get a 2nd opinion. I did a blood test to see if it could be lyme. The test came back NEGATIVE for me CURRENTLY CARRYING LYME, but came back POSITIVE that lyme was once in my blood. This doctor was one of those doctors that follows the methods that the board of doctors sets for lyme...which is basically a bunch of BS. She put me on basic antibiotics for a month and said that the antibiotics will kill anything! (YEAH RIGHT) For the month, my palpitations disappeared but came back 3 days after the treatment ended.
After this, I waited a while to think about going to yet another doctor. In the meantime I had developed other symptoms and also had a cyst removed from my back (benign thankfully) that I wasn't sure if it was linked to having lyme disease or not?
I noticed I was unable to exercise anymore without every muscle in my body feeling like jello, like I just had run a marathon or something. I still had the heart palpitations. Everytime I'd bend over i would get very nauseous and dizzy. Occasionally I would smell a metallic smell, and taste a strange metallic taste. In addition to those symptoms I also would occasionally get very bad vertigo, I never passed out from it but I would get it about once a month. I also developed "eye floaters" in JUST MY RIGHT EYE..which I thought was strange. Its basically this grayish light that looks like its in the top of my vision and quickly moves toward the outside of my right eye then disappears...this happens 1-20 times per day currently.
I went back to a new doctor who is a Naturopathic Doctor and one of the first and only doctors to ever actually listen to what I had to say.
I told him about my symptoms and we basically started over from the beginning. I was tested again for lyme disease, and other diseases, all of which came back negative. (I realize there are a lot of false positives, and false negatives regarding lyme)
I was put back on antibiotics for about 2 months, and felt decent but not 100%. I still was dizzy and still had some eye floaters, but I was a little better. I told the doctor this, and he decided to try some other things. He thought it could've been a magnesium deficiency so I took magnesium for a month. This did not help anything.
That was my last doctors visit, and I plan on going back soon. I am now in slight denial that maybe it could be something else other than lyme? But I'm debating whether or not I should attempt doing treatment for lyme? My doctor told me that if the magnesium treatment didn't work, that he would refer me to a lyme specialists. Im just worried about whether it ACTUALLY is lyme disease affecting me or not. I never did find a tick on my body but I seem to exhibit many symptoms. I will list them all below. I would appreciate any and all input and suggestions. At this point I am desperate for improved health. I've tried taking cleansing/detox baths, I've tried changing my eating habits etc etc. I just don't feel better.
Symptoms
Frequent Neck/Headache that starts on my left side of my neck and is in the back of my head.
Loss of Grip Strength in Both Hands, Occasionally when I turn a door knob, pain shoots through my wrist.
Vertigo (I've noticed going from a cold to hot place sometimes triggers it)
Heart Palpitations
Pimples/Boils on strange parts of my body,like Inner Thigh (small boils), my Scalp will get small very painful pimples.
Dizziness/Nausea bending over
Exercise Intolerance
Heat Intolerance
Very Cold Feet and Hands (which is very uncharacteristic of me, I used to be like a furnace, always warm)
Eye Floaters (just in my right eye, never in my left)
Fatigue
Don't Like Doing Things Anymore, not very sociable.
Weird Pain and sometimes random bruising on my upper ankle/lower shin
Constant Stuffy Nose
Chronic Cough
Always Clearing Throat
Sore Throat
Arm Goes numb if I just rest on it for a few minutes, my ring and pinky fingers get numb the quickest.
Pain sensitivity, if someone pokes my ribs it hurts WAY more than I feel like it should.
Cannot hold a baby without my arms getting really tired, can't hold my arm up to change the radio station in the car or it gets tired quickly.
I just wish there was a way to make sure that it was lyme before investing the time into traveling over an hour away to a lyme specialist.
Have any of you had these symptoms? I may be missing a symptom or two...
Thanks for the support everybody, I genuinely appreciate it and look forward to hearing from many of you.
:sad:

Hi again! Welcome back!

As you already know, Lyme is a confusing illness. It's symptoms mimic many other diseases/illnesses. This is just my opinion. But I would see an LLMD just to see what they say. They will also help rule other things out. It's pricey, as most insurances don't cover it, but your health is worth it.

I would also want to rule out low thyroid. Many of your symptoms are hypo related. It's often not good enough to be just "in range". Many people need to have their FREE T3 and FREE T4 levels at the middle to upper end of the range. Many doctors only test the TSH, which is a pituitary hormone NOT a thyroid hormone. It is very possible to have a "normal" TSH, but still be hypothyroid!

A good site to learn more about thyroid is stopthethyroidmadness.com

Good luck! I'm sure others will be along to chime in as well.

I just wrote a long post and it disappeared into the internet. Sigh. Let me try again.

Dfrasier, I don't remember what you asked about a couple months ago. Sorry, there are a lot of people here! Were you asking for a Lyme Literate Doctor? Was the naturopathic doctor Lyme Literate?

A specially trained Lyme Literate doctor can diagnose you based on symptoms, even if the tests are coming up negative. If a past doctor told you your blood was "past indicative" of Lyme-- that's important. You probably have an infection that never cleared. A positive IGG doesn't really mean that.

We'd be glad to help you find a Lyme Literate doctor. Your symptoms sound like Lyme to me, as a person who has it. Hope this helps!

Well, if I could go back in time...I would have pursued the lyme sooner....easy for me to say, right?

I tested/scanned for over a year....kept seeing Lyme come up when I was doing Dr. Google...but never had the fatgue, bulls-eye rash, flu-like symptoms...so never pursued it.

And I want to vacuum again...lol

You have a lot of symptoms...affecting different bodily functions - it sounds systemic to me...

Georgia Hunter said...
Sounds like multiple issues to me as well. Sounds like a cervical issues with the headaches and weak hands/poor circulation. If you taste metals, you probably have metals. You need to work on detoxing your system as much as possible. Sounds like a methylation pathway blockage too.

Thank you so much for your input.


Thank you to everyone else too. Any input helps, and if we share our own experiences with others we can always help out others too.

ok dfrasier - we've decided you should see a LLMD....lol.

(joking)

Welcome back! I hope you're feeling more reassured from all the responses. Love that you can make light of the cat box, thanks for the laugh!

Just wanted to let you know that I've suffered with every single symptom you listed, with just a few tiny differences like random bruising on shin and thigh instead of shin and ankle, chronic sighing instead of clearing throat, etc. I even get the same two fingers going numb as you, and can't believe you identified the "tired holding a baby" thing--I almost dropped my baby daughter out of nowhere when my arm and back muscles gave out but luckily my sister caught her. Awesome job describing the symptoms! Probably much easier for a doctor to determine what you're dealing with.

I thought these were all separate things for years, like "carpal tunnel" with the hand issues instead of lyme. Good luck with the drive to the LLMD and please let us know how you progress!

Best,
Maui

Dfrasier, isn't this forum awesome?! I honestly do not know what I would have done if I'd had to go through all of this lym diagnosis and treatment stuff without others on here for support and knowledge. I recommend this forum all the time to others who are suffering.

Your dizziness and searching for words are very common to lymies too. I was feeling like a fool at my job (doing presentations in front of a hundred people, it doesn't make me nervous) but unable to find the word I wanted to use. Before treatment I was saying the exact opposite word of what I wanted to say, and I knew it was the wrong word but would say it anyway. We're like twins. ;-)

I do want to caution you about the hoarse throat thing just from my own experience. Of course, there's no way that I can say from a computer what this is about for you yourself. But I want to tell you that I also had this same hoarseness symptom on & off for years. I was singing in my church's choir. I, too, could only sing a song or two before having pain in my throat and becoming hoarse. At this same time I was teaching in a tough community under a terrible principal. It was a very stressful environment--I had to talk to my students throughout the whole class to behave or follow directions, etc. When I would talk to them my throat would sieze up and I would choke suddenly, then I would have a coughing fit. It was the weirdest experience. The other teachers would hear me coughing and choking and come into my classroom to scold the kids--couldn't they see I was sick?! This went on for most of an entire semester. At choir practice I noticed that I'd lost the highest and lowest range of my singing abilities, I couldn't hit those notes anymore.

I finally went to an Ear, Nose, Throat doctor when the pain in my throat was too bad. She put a scope in my nose and down my throat and reported that I had nodules on multiple vocal chords. She said if I stayed in that job I would scar my vocal chords completely, losing my voice permanently. She wrote a note to my school district for a Medical Release from my job and I had to be silent for 6 weeks, or whisper. It did eventually heal. Every now and then I get a reminder with the sore throat and hoarseness, and sometimes a twinge of throat pain, but nothing like before. When this happens I try to stop talking or singing for a few days.

I was surprised to see "nodules" listed in the "New to Lyme?" thread at the top of this forum. It was the first time I made the connection to lyme at all. Based on this experience, I would encourage you to see an ENT as well. Of course we cannot tell each other what's wrong with us for sure. But I would hate for you to also lose your singing or talking abilities!

Keep posting, and I hope you get some support from a good doctor soon.

Maui