Could it be chronic lyme?

Hi everyone, my name's Nik, I'm 22 years old and new to the site and just wanted to see if anyone here thinks what I'm dealing with might be chronic lyme disease.

It all started about 8 months ago when I became ill with what seemed like a common cold, only after a few days, I started getting this really weird light throbbing/tingling sensation on the left side of my head accompanied by pretty severe brain fog. At times, it almost felt like part of my brain on that side just wasn't there. And on top of that, I also noticed I was feeling unusually fatigued and short of breath and then there were these red skin spots called cherry angiomas that started popping up all over my stomach and chest (I'm told these are commonly associated with lyme coinfections).


So anyway, I ended up having a CT scan and lots of basic blood tests done and to my surprise, everything came back normal, although they did find I had a high standing heart rate which eventually led to me realizing I had what is known as orthostatic intolerance or POTS Syndrome. As I'm sure most of you know, fatigue and brain fog are highly common with POTS so this put my mind at ease for a while.


However, a few months later I started experiencing a wide variety of bizarre symptoms including joint/muscle pain that seemed to jump from place to place every couple of days, feeling turned around in relatively familiar places and other memory issues, tiny petechiae rashes (usually on the arms, wrists, stomach and thighs) that would come and go, constant neck cracking and crackling/ticking in my joints whenever I stretch my arms, tired eyes and feeling unrefreshed after waking up in the morning, twitching in my right eyelid, high frequency postural tremors in my fingers that are usually barely noticeable, weird tingling and tickling sensations In various parts of my body, increased eye floaters, extreme fatigue and these little, short lived twitches I'll get in various body parts.


So yeah, at this point I had realized that there was definitely something neuro or infectious disease related going on that was causing my POTS syndrome along with all of these other symptoms I'd been dealing with. After talking with my mother who happens to be a RN, we came to the conclusion that it could very well be lyme disease as I had been bitten by a tick a few years back plus my aunt had it and suffered from virtually all of the same symptoms.

So I went to my doctor a few weeks ago and he ordered a basic lyme test which, of course, came back negative. Now this is where we get to my current situation.... From what I'm hearing, especially with lyme that has been in one's system for a long period of time, it's common for a basic lyme test ordered by your family doctor to come back negative and a visit to a llmd is necessary for proper testing.

The problem I'm currently facing is that because my lyme test and previous blood tests all came back negative, my doctor is thoroughly convinced that I'm either a hypochondriac or that all of my symptoms (including my POTS) are somehow all simply caused by anxiety. I mentioned the fact that lyme and autoimmune diseases that cause similar symptoms can be very hard to detect without referral to a specialist and of course he just laughed and tried to say that I had been spending too much time using the Internet for answers and that most specialists are "scam artists".

So needless to say, I've been diagnosed with anxiety which Is most definitely B.S, my pcp is extremely hesitant to refer me to a specialist and as a result, I'm pretty much on my own now as far as getting a second opinion goes. Which really blows, considering I'm only 22 and don't have the best insurance.

Anyway, here are my questions to all of you... At this point I'm pretty certain I have it but in your honest opinions, does what I've been dealing with sound like chronic lyme disease? And do any of you have POTS syndrome and/or CFS as a result of lyme? I remember reading somewhere that POTS syndrome is often caused by infections. Any insight would be greatly appreciated. Thanks, Nik

Post Edited (Lifelover93) : 5/26/2016 4:02:44 PM (GMT-6)

Lifelover93 said...
does what I've been dealing with sound like chronic lyme disease? And do any of you have POTS syndrome and/or CFS as a result of lyme? I remember reading somewhere that POTS syndrome is often caused by infections. Any insight would be greatly appreciated. Thanks, Nik

Nik -
You are one smart young man. You and your mom have already nailed the problem and I am very, very sorry that your MD has failed you miserably, and dangerously. If it weren't for his insulting and baseless arrogance, t'd give him the benefit of the doubt because he is likely criminally ignorant about lyme & co but the CDC and IDSA has created a system to keep most MDs ignorant (although that's slowly changing). But he has really done you a disservice and WHEN you recover (and you will) you must circle back to him and give him an opportunity to "learn" about lyme & co...

I digress.

I'd say the chances are very good that you have chronic lyme and very likely other coinfections that the ticks also carry with them and infect us with. I'm sorry - but knowing where to turn for info is often half the battle for us.

So - you have classic symptoms of lyme and company although true diagnosis is complicated and requires a comprehensive view of your history, current body system functioning and an in-depth understanding of your symptoms --testing sometimes complements a clinical dx and sometimes not. Your MD likely has no idea what tests to administer, how to administer them, or how to interpret results--most don't.

So - most of us here will strongly encourage you to find a lyme-literate MD (LLMD) as soon as you can. Please create a new thread titled "Looking for an LLMD/ND in _______" and name your home town or closest metro area. We will respond with more specific info. I know it can be expensive but it's beneficial for so many reasons to start initially with a specialist. However, many people do specific stages of treatment on their own and we can help advise about that. But establishing a relationship with a specialist is a really really good idea.

POTS and chronic fatigue syndrome (ME) and fibromyalgia and thyroid problems and MS symptoms and GI problems and so, so, so many more symptoms/conditions are very common with lyme & co - which is why lyme is known as the "great imitator." I can go into a little more detail about why POTS or CFS are associated w/ lyme in another post.

After you get a chance to review the "New to Lyme?" thread let us know and we can share more specific info about how you can get started on the initial stages of treatment even before you see a specialist. There are also ways so prepare for better test results and you have time to do that, too.

Again, welcome - you're in good hands.

AND THANKS FOR BREAKING UP YOUR INITIAL POST! ;)

-p

Post Edited (Pirouette) : 5/26/2016 4:03:23 PM (GMT-6)

I also meant to share why lyme & co tests are so often inaccurate.

For most of us, by the time we develop so many symptoms our immune systems are really struggling. Unfortunately, the best diagnostics are serology tests which rely 100% on a well-functioning immune system to create antibodies to the lyme at a detectable level.

The statistics on the available diagnostic tools are abysmal - the CDC estimates that 50% of the tests are inaccurate, but their recommended two-tiered diagnostic methodolgy (which many MDs and insurance companies enforce as a requirement recommends MDs initially test with only an ELISA test first, and recommend that ONLY if it is positive to follow up with a more specific WB test). This ENSURES even further inaccuracies because of the grossly high likelihood of false negatives of the initial test.

But an even harsher reality is that since most MDs are uneducated about even the basics about lyme & co, most don't recognize lyme & co symptoms so don't test patients, again--they don't know what test to use and they certainly don't know how to interpret results accurately and are afraid to explore the possibilities of a lyme dx because of the controversial nature of treating.

But the general public has also been kept in the dark with dangerously archaic and outdated information about how to recognize lyme symptoms. Most people think you have to be in an endemic area to be exposed. Most people think a tick has to be attached for 24-48 hrs before it can transmit any infection. Most people think they had to have SEEN a tick for there to have been a tick. Most people think that you're only infected if you've produced a "bullets-eye" rash. They're wrong.

So - all the cards are stacked against us. Nearly all of them. It doesn't take a genius to see that MOST people who have lyme aren't being diagnosed, much less treated properly.

-p

Hey Pirouette! Thanks so much for the advice and proper welcome! :)


I apologize for my paragraph being so long and poorly constructed at first. Lol. I do realize just how difficult it can be to read with this condition, so I'll be sure to include proper spacing from here on out.


I'll most definitely take some time to read the "new to lyme" post as well as I'm sure there's tons of helpful info there as you said.


Regarding my pcp, there's no doubt that he has not been properly educated when it comes to infectious diseases and sadly, it seems he (like many other MDs) chooses to remain ignorant to the truth.

I remember when I showed him my hand tremors, the cherry angiomas I had mentioned earlier and what appears to be bartonella stretch marks and mentioned that they are both signs of lyme coinfections and his immediate response was that the only rash I'd get with lyme would be a bull's eye rash that would have faded away long ago. *sigh*


As for finding a llmd, thanks a ton for the links/advice! I'll be sure to send you an email and use the links rather than relying on a doctor for a referral or going it alone as the last thing I need right now is to end up with yet another MD who is completely clueless.

Regarding testing, I knew something was up when the results came back the morning after I took the test as from what I had been hearing, a good thorough test should take roughly two weeks. And the lab was a local one run by two people so I'm sure that might have had something to do with the negative results as well. I'll make sure my next (and hopefully last) test I take is through igenex.

The reasons behind the false negative tests you mentioned make perfect sense, and of course, I was bitten by the tick 3 or 4 years ago so my immune system is most definitely going a bit haywire. And furthermore, as you might have assumed, my doctor, although he didn't seem to specify the exact details of the test, had mentioned it being a two steps process for insurance purposes. So because my first test came back negative, they didn't see any reason for the more accurate follow up that may have very well came back positive.

Thank you for your concern peteZa it means a lot to be getting such sincere and helpful feedback from everyone. :)

I would have to agree with you when it comes to the definition of "chronic lyme". Although some people are lucky enough to catch lyme in the early stages and treat it by going on antibiotics for a week or two, the rest of us develope severe symptoms which can last for months to years or even decades.


I do know a bit about detoxing but I'll be sure to check out the site you provided so I have a better understanding.

Just out of curiosity, what are your thoughts on alkaline diets? I've heard that many people have successfully beaten all kinds of different cancers, autoimmune diseases and other conditions by pairing this diet up with daily exercise and natural medicines.

And yes, this is most certainly a fantastic community here. I'm already finding lots of valuable info and It's so nice to finally have some answers from people who can truly relate to what I'very been dealing with for almost a year now. :)

Thanks for the reply Girlie!

Now I really know I need to test through igenex after taking some time to detox. :)

Get the Igenex Lyme Western Blot IgM and IgG - $210 for both.

Thanks Robby! I'll be sure to go with igenex. It's such a shame that tests can be that costly. Sorry you had to deal with that.

I don't know about insurance - I live in Canada...it's a whole different ball game up here.

I wouldn't actually say they are accurate...but they are the best testing facility in the U.S.

The Western blot is an antibody test. Your immune system needs to mount a response and produce antibodies in order to be positive on the bands.
Our immune system takes a beating with lyme (especially if we've had it for many months or years) - so sometimes it's not functioning enough to produce the antibodies necessary for a positive test result.

But, often, even if there isn't a positive test result ( positive test result is based on having a certain number of bands positive that are considered lyme specific) ...there still may be some positive bands show up...When these bands are lyme specific bands it can be used as a back up to a clinical diagnosis. Even IND lyme specific bands are significant. (IND - is Indeterminate - means not strong enough for a Positive...but showing 'something' - we call it a weak positive)
LLMD's should be making a clinical diagnosis - looking at your history - exposure to ticks...whether you had a known tick bite...along with your symptoms....and then using test results for a backup.