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Posted 3/19/2015 10:57 PM (GMT 0)
I've really been emotionally struggling lately with this illness and how unique it can be to each person.

I have so much anxiety lately because I feel like some of my symptoms are so uncommon. I get so nervous when I can't find other people who share some of my symptoms, and then I start questioning everything.

I keep reading that lyme is different for each person, and so is treatment. Are "symptom lists" totally complete, or can there be others not on the lists?

Please reassures that this disease is strange and can do anything to a person!
Posted 3/19/2015 11:08 PM (GMT 0)
I totally understand you!! Did you just get Lyme or have you had it for some time? I have been told that I have so many different autoimmune problems and then I get all these crazy annoying symptoms!! I live in a mountain town in Colorado where I hike and bike allot and it just gets in the way of it all... it is frustrating...especially when these weird unexpected symptoms just pop up out of know where. You are not alone, and If you need someone to talk to...I am here!!! :)
Posted 3/19/2015 11:11 PM (GMT 0)
Hi RunnerGirl,

Lyme Disease is known as the Great Imitator, it mimics over 300 diseases. My symptom list is at least 1,5 pages long (A4), I can not go to a non-LLMD and present them the list, they would get me admitted and throw away the key.

If you have a symptom that seems strange to you, and it worries you, please don't hesitate to post. There's a very big chance that others will recognize it.
Anxiety is also very common for Lyme and Bartonella... If the anxiety is really overwhelming for you, it would be better to mention it to your dr, he/she might find it necessary to do something about it.

You are very right in saying that Lyme is different for each and everyone of us. My sister has Lyme and Bartonella, just like me, we see the same dr, but get very different treatments and our symptoms are not at all the same. Some are, but some are not.

MarieLS
Posted 3/19/2015 11:41 PM (GMT 0)
Thank you both.

Marie, one of my very first symptoms (it sounds dumb) was terrible chronic belching. Within a week I developed this (hundreds per day) along with nausea, muscle twitching fr head to toe, blurry vision, floaters, tremors, inner vibrating, shortness of breath, chest pressure, numbness, shakiness, fatigue, anxiety...the list goes on. I just woke up one day and all he'll broke loose.

The stomach issue (belching) is not what people will typically say. It's not yeast, it's not my diet, not in need of digestive enzymes. Anything I put in my stomach, even water, causes this...since the day I got sick.

I spent a year seeing GI doctors and neurologists and others, tons of tests, all normal!

I thought it was weird all these crazy things started at the same time so I just started researching. I actually found an old member of this forum who was posting about her Lyme/Bart symptoms and we shared so many symptoms, especially belching! She was burping over 500 times a day and said after Bartonella treatment, it went away.

I've found a few others who mention that symptom...but as dumb as it sounds, I feel alone in it and it would be comforting to know there are others.

After I read about her symptoms, a year after I got sick, I finally tested via igenex and was positive. My llmd had also diagnosed me clinically with Bart.

I really just want to know if anyone has heard of this. Please please please don't suggest another illness it could be or to try something...I've done it all and been tested for it all! The only thing that comes up is Lyme!

I know it can mess with your stomach...??
Posted 3/19/2015 11:45 PM (GMT 0)
Oh I should add, my llmd says he's seen this on others, but it's hard when I haven't really talked to anyone with it. I keep telling myself lyme can cause practically anything...
Posted 3/19/2015 11:56 PM (GMT 0)
All the symptoms you are listing are on my list too, but not the constant belching. I only get frequent belching when the gastritis is flaring...
Maybe you could start a new thread about it, so that people's attention will be caught by this particular symptom? Don't feel embarrassed about it, we even have a thread (a serie of threads) called 'Poop and you' :-)
Posted 3/20/2015 12:02 AM (GMT 0)
I always question the disease because my symptoms seem so unspecific. I sometimes wish I had a textbook case, like the CDC describes it. But I'm grateful for how mild of a case I actually have.

I figured I'll believe it's Lyme and keep moving forward. It's sure as heck better than having no idea what's wrong.

Another problem I found a lot of us run into is our hypervigilance. We notice EVERYTHING. sometimes things that are normal but we catch it because we're always evaluating how we feel. I find ignoring nonspecific symptoms makes them go away little by little.
Posted 3/20/2015 12:35 AM (GMT 0)
I have some bizarre signs/symptoms, too. One is the back of my hands - they look like I'm 90 years old. Very veinous, almost like the fat is gone...it's just skin, veins, and hands. And, when I have a hot flash, the backs of my hands sweat.

I have tightness around my chest...don't know if it's my ribs or...? I have trouble sometimes, especially when I'm on my back...taking a deep breath...sometimes, I shake/tremor in that area.

My skin on my front (the area between my breasts and neck) is shiny and smooth.

Those are a few of my bizarre symptoms. Those ones I don't even mention to my Dr...as they're not high on the list of my 'worst symptoms' - they're just my 'bizarre symptoms'.

Oh - and they need to change the Lyme websites. Whenever I suspected Lyme disease...I would go to the sites and look at symptoms...the first ones I saw: bullseye rash, flu-like symptoms, fatigue...I didn't have them...so "nah, I don't have lyme disease"....
Posted 3/20/2015 2:20 AM (GMT 0)
Girlie - I so AGREE! I had two people mention Lyme Disease to me when I was trying to figure out what was wrong with me. I went on-line and saw flu-like symptoms and a bull's eye rash and quickly dismissed the idea. This really cheeses me off as I could have gotten help so much sooner.
Posted 3/20/2015 2:42 AM (GMT 0)
Runner girl, you are definitely not alone in those symptoms! My Lyme and Bart started with digestive problems first: diarrhea, gastritus, bloating, nausea, throat problems. One of my digestive problems was the excessive burping - hundreds of times a day too!

All my tests came back normal for every possible GI thing and it wasn't candida. I had no clue what was going on until I happened to go to an LLND without realizing it and she diagnosed me with Bart and Lyme after looking at all my symptoms.

Since some of my main symptoms at the time were so different from what most people's main Bart and Lyme symptoms were I doubted the diagnosis a lot but decided to give treatment a try.

I'm almost at the symptom free point now, so all the digestive issues have resolved but it did take some time since I've been treating for 8 months.

The disease effects everyone differently but it will get better and you aren't alone!
Posted 3/20/2015 2:51 AM (GMT 0)
Hiker! Thank you so so so much for responding to this post! You have no idea how much that helps me to know that happened to you as well. Sometimes it just feels good to know you're not alone.

I just slowly started treating Bart a few weeks ago and was getting mad atyself for no improvements yet. It also helps to know you have been treating for 8 months before it all went away.

Thank you so much :)
Posted 3/20/2015 3:14 AM (GMT 0)
Girlie! Oh my gosh yes, the hands!! Huge rolling veins on the backs of my hands and now thick, dry, leathery skin on top of it. I hate looking at them, I feel so self conscious!

Also, I have noticed the skin under my eyes is really dry and fine lines are starting to show. Of course maybe it is just me getting older (36) but with all the rest of my dry skin everywhere, I think it is all part of this package. And just before I got a diagnosis, I started noticing dark brown spots, like sun spots show up on both sides of my face in clusters along my cheekbones.

I feel like I woke up one day and looked 30 years older overnight.

Runnergirl- I never had belching specifically, but just before I was diagnosed, I got to the point where I thought I as having food allergies because I could no longer tolerate certain foods that I had consumed my whole life. I would have terrible stomach pain and acid reflux. I have chalked it up to either the lyme destroying all the good gut bacteria and/or the emergence of the autoimmune response I began to experience, also thanks to lyme.

You are not alone!!
Posted 3/20/2015 3:23 AM (GMT 0)
Thanks lymie :)

This post has been super helpful to know everyone has unique symptoms and to hear from Hiker.

I really appreciate it.
Posted 3/20/2015 3:41 AM (GMT 0)
And thanks winterloki, you are so sweet.

I agree with the symptom lists needing to be updated. I had questioned Lyme for a few months, but every time I'd go online to read about it, it would say you needed to have a bullseye rash, found a tick on you, have flu symptoms or stiff joints. I had none of those, and put off getting tested for 6 months because I thought it was impossible for me to have it!
Posted 3/20/2015 12:41 PM (GMT 0)
Hey Runner,

I can tell you that I seriously NEVER burped before Lyme. Ever. Once my Lyme became full blown, I started burping throughout the day. It is not 100's of times, but from someone who never burped, this was a bit distressing to say the least. Especially in front of my hubby, lol.

What can I say? Excuse me?! Ha. I just blame it on Lyme. Cause it's def not me. Hang in there. We all have our moments of doubt.
Posted 3/20/2015 1:10 PM (GMT 0)
Leilex,

Thanks for your response. I know how you feel! I know it has to be related to Lyme (or Bart probably), because I never had this issue either. I woke up one day and it started (with nausea), and within days/weeks I started developing all my other Lyme symptoms. So...it has to be a symptom (even though it's not super common). It's just so frustrating to ask about it and everyone just tells you it's "yeast" when it's not, or to adjust your diet, but it has nothing to do with that. So it's helpful to hear from others who have experienced it.

I spent so much time going to GI docs for this problem (who did every test imaginable and then told me it was in my head). Then I was going to neurologists for muscle twitching and other problems, eye doctors for vision, regular doctors just because I was tired and felt like crap. For a long time it didn't occur to me that a specialist was never going to put this all together.

I felt like I suddenly just "had a lot of weird physical things going on at once" -- which seems to be the story of all of us!

Like I was saying earlier, I kept googling all these weird symptoms and finally came across that old post on THIS forum from a past member! She said one of her first symptoms was belching 500 times a day no matter what she did! She was kind enough to talk with me and compare symptoms. Nothing else was answering my questions, so I finally got a Lyme test through Igenex...POSITIVE! Went to a LLMD and he said all my symptoms make sense.

Ugh, anyways. Do you have Bart?
Posted 3/20/2015 2:01 PM (GMT 0)
Runner,

Isn't that the usual story? Go to 20 Dr's only to diagnose yourself?! It used to upset me but I changed my emotion to gratitude. And I'm so grateful that you found your answer!

Yup, Bart girl here. My feet used to feel painful every morning. Now, It just bothers a bit. And I had terrible panic attacks where I'd end up in the ER. Now, it's just general.

It all stinks but the positive test is your answer to all the craziness. Now if we can only get better....

We will ;) You take care
Posted 3/20/2015 2:08 PM (GMT 0)
Hi Runner!

I am exactly like you! Freaking out over my symptom list being so different from everyone else. I feel like, "how can it be Lyme?" "Nobody else presents the way I do!" It's just awful. It would be so reassuring if this was cut and dry. I hate that it's not. And my stupid tests are negative! Or Indeterminate.

And Girlie....... I did the same thing! I looked up Lyme on the CDC site and saw: bullseye rash, fever, flu, stiff neck..... And immediately dismissed Lyme as a cause! Sucks!
Posted 3/20/2015 2:29 PM (GMT 0)
I know Utah, I hear ya. Important question though, are your test results actually "negative" or are they "IND"? Because in my opinion, and lots of others' opinions, IND is definitely not the same as negative. They obviously saw something there, or it would have been a total negative! And even at that, so many people have false negatives. But, I know how you feel. I see from your signature that you and I share some positive bands (IGM 18, 31, 41). I really think your positive & IND bands mean something.

I have a seriously across the board positive test, and I STILL question things! I know 100% I have Lyme, but since I haven't been herxing on new antibiotics, I say "what the heck, do I not have Lyme?" I had a LLMD appt the other day and asked him about that. He told me that not everybody herxes, and try not to worry about that. I told him that after I started a new antibiotic, I didn't get sicker, but I did notice I started getting rashes and scratches. He said that could be my form of a herx...a new Bart symptom coming out as we started to treat the Lyme.

He also expressed to me that every person is so different -- their symptoms, what meds work for them and don't work for them, if they herx or don't.

I bet you have several symptoms that lots of other people have, and you also have symptoms that it feels like nobody has (that is how I am, a combo of the two). I think people often share some of the common Lyme symptoms, and then they have their unique set also.

What are your symptoms you feel like nobody has? Maybe I have some of them :) I felt like nobody had the belching, and just in this post I found 2 people who had it from Lyme/Bart as well, and it really helped me to hear that.
Posted 3/20/2015 2:58 PM (GMT 0)
It's not so much as what symptoms I have. It's more what I DONT have. I don't have any pain, numbness, headaches. None! Everyone always talks about their stiff necks, aching knees, shoulders...... I have none of that.

My symptoms are mostly neuro:

Terrible brain fog, poor memory, poor concentration
Severe muscle weakness....legs, arms, hands
Poor stamina....
Severe panic attacks and anxiety
Insomnia (difficulty falling asleep)
Moderate fatigue, but not terrible
Shakey hands
Hair loss


It's strange that I have no pain issues. Don't most people?
..
Posted 3/20/2015 3:02 PM (GMT 0)
I don't have much pain either (I just randomly get shooting nerve pains). I don't have headaches, no stiff neck/shoulders, and just the occasional achey joints that come and go. And I 100% have Lyme.

I have similar as you the brain fog, anxiety, shakey hands, and some other neuro stuff.
Posted 3/20/2015 5:45 PM (GMT 0)
RunnerGirl82-

Gastros cant detect bacteria/fungas very good. I gave up on them eons ago. Once the body gets stuch in burping mode, its hard to get out the the cycle.

There is a great product for cronic burping. There are a couple brands of D-Limonine, but I have found the Jarrow brand the best for the $.

Its a great secret the works. I showed it to a gastro Dr years ago, he was dumbfounded. After thousands spent with several gastros, I fixed it for $11. I only take it once in a while now.
Posted 3/20/2015 5:48 PM (GMT 0)
Thanks Astroman, but I've been dealing with this for over a year since I got sick. Nothing really helps until I get rid of the disease...others say the same thing who experienced it.
Posted 3/20/2015 6:11 PM (GMT 0)
Thanks Leilix. So you attribute your belching to either Lyme or Bart and some kind of effect it has on you? Did it just start suddenly once you got sick? That's how mine was.
Posted 3/20/2015 7:12 PM (GMT 0)
RunnerGirl82-

Understandable, but even if its just a band aid, it might help by breaking the cycle. The body can get stuck in bad cycles regardless of the cause.

I would get stuck in burping mode sometimes without candida symptoms, which was weird and unexplainable, so I assumed it was possibly from lyme bacteria itself, I dont really know. However this D-limonine is the only stuff that broke the cycle, it calms down and sooths the entire digestive tract via a natural product.. Theres just nothing else that is comparable to it. This worked after having lyme symptoms for over 20 years. And I only invested 11$ in it.

I just wish there was a magic natural pill for my lyme/bart legs/feet.LOL
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