So tired of living this way...could Lyme be the culprit? Sorry- long read.

Hello everyone- My name is Rex. I'm a 31 year old, extremely active, fit, and (until lately) enthusiastic young man, husband, and father of an amazing (and moody) 2 year old daughter. The last 3-4 years of my life have been accompanied by a downward spiral of seemingly worsening physiological and psychological headaches (literally). Let me just say that at this point I am nearly convinced I am either experiencing the early phases of ALS, BCFS, or (maybe...just maybe) Lyme Disease. I'd like to tell you more- but first- some relevant background information.

I graduated Grad school in 2010 and took a job in Lynchburg, VA, where we lived for just under two years. Our house bordered a wooded creek area and I frequently found ticks on both myself, my wife, and our dog. I was bitten at least twice- normally by little tiny guys. In April of 2012 I was cycling with my father on vacation and witnessed him get hit, and killed by a negligent driver right in front of me. Post- accident, we moved back to SW Colorado in June of 2012 to help my mother in any way we could. While in CO, my wife and I were married (we got engaged the night before my father was hit and killed in 2012), and my daughter Ayen was born in April of 2014. Recently (last month), I was offered a new tech job in CA and couldn't turn it down so my wife, daughter and I relocated to Southern CA, and are still in the process of getting settled in and making our new house a home.

Synopsis: graduation, first job (move to east coast),extremely tragic event (move to CO), new job, marriage, first child, new job, (move to CA). = a little bit of stress no doubt.

Now onto the medical / physical part of things where things get interesting.
When we first moved to VA, and during our time there- I was super energetic. I commuted to work every day by bike, competed in dozens of cycling races every year, and even placed at state championship races. I felt happy, confident, excited, and limitless.
about 3-4 months after the move back to CO, my first symptom of concern was poor circulation in extremities like toes and fingers, as well as CONSTANT radiant neck pain that seemed to come from no where and span from the base of my head, to my middle-low neck. I was diagnosed with Raynaud's Phenomenon which I thought was odd, and advised to be on the lookout for inflammation and associated rheumatic diseases since they often go hand in hand. Doctor had no idea about neck pain and MRI showed only slight spinal cervical stenosis at the C5/C6 joint. I became extremely...extremely lethargic and tired all of the time. Chronic, debilitating fatigue that kept me off the bike and started to make me lose interest in most activities. about that time I started to realize I no longer "felt" like I used to. I could consciously acknowledge and realize I wasn't as excited as I used to be about things, I no longer had the same enthusiasm of outlook for anything. I believe these frustrating symptoms, in conjunction with the tragic event of my father's death / murder compounded and put me into a state of depression. I wasn't riding hardly at all, and had lost interest in just about everything about this time I was finally referred to a great rheumatologist in CO who promptly diagnosed me with central pain sensitization / Fibromyalgia. All of the tender points that were tested resulted in discomfort and pain. I was prescribed cymbalta (did nothing- or not much at least) and after 6 months I weaned off. Then I was put on Celexa which other than assisting with some needed weight loss- also did nothing, finally (about 3 months ago) I was prescribed buproprion which although seemed to help a little- also made me feel anxious and turned me into a huge ***hole to my wife and others. So I got off of that quick.
In the last couple of months the most concerning symptoms have arisen. I have always cramped easy and quicker than others on bike rides / races - my father had the same issue. Since I started riding competitively in 2010 I have also noticed minor faciculations / twitches in my calves, quads and hamstrings which I figure was always due to recovering from hard rides. However- in the last couple of months my twitches have gone EVERYWHERE (calves, forearms, biceps, traps, neck, face, cheeks, lips, abs, butt, lower back, you name it) and they are occurring nearly constantly. I have become clumsy- dropping things often, and having difficulty finding words and talking at times. My calves (particularly my right calf) feels tight, cramps often, and (feels) weak. Most noticeable when walking up hill. I feel clumsy walking with (particularly my right food) feeling sloppy and clumsy and "droppy" now and then. I'll list more issues in summary format below:

2012-2014 Old / original issues (still exist)
Awful radiating neck / lower head pain- constant
Raynaud's Phenomenon
lethargy
extreme fatigue
depression
fibromyalgia
faciculations in legs after riding
choking / swallowing (almost choked to death 2 times in one year...on basically nothing)

2015-current (new issues)
anxiety? (sometimes extreme)
extreme, constant, and widespread faciculations / twitching
cramping (bad at night)- mostly in legs
clumsiness
word finding difficulties
pain in hands joints and elbows
speech difficulties
Lots of saliva (weird) but it just accumulates like never has before.

All blood tests have came back okay for the most part so no underlying rheumatic condition is currently suspected. I have had blood in stool after longer rides / exertions as well as IBS but a recent colonoscopy and endoscopy came back fine (lower) with only eosiniphilic esophagitis found in moderation in my esophagus. A food allergy test came back and I was high or elevated in like 13 of the 19 food groups tested.

I know I need to get in and see a doctor- I plan to, however- I have to wait another 30 days before my new insurance here in CA kicks in. My rheumy has referred me to a Neurologist here in town and I hope he has some definitive answers for me. This probably sounds funny, but after witnessing my father's accident, I no longer have a fear of death. I really don't - what I fear is not knowing what is going on inside my body that is keeping me from mentally and physically enjoying a time in life that should be special with my family and particularly my daughter and wife. I fear my daughter growing up without a father, and my wife alone. If this is something awful like ALS I sure would like to know instead of constantly wondering IF....I digress though. I recently saw some things online that gave me "hope" (feels weird to hope for having a disease) that maybe my conditions are in line with Lyme disease- and maybe I contracted the disease while living in an infested area in VA. Curiously, I pulled the CDC national Lyme data and geo-referenced it with County data for the US and there was a pronounced spike in Lynchburg Lyme cases in 2010, 2011, and 2012- the three years we lived there (see attached images)

I want to thank anyone who has taken the time to read this and offer any feedback they can. If there are other people going through similar struggles I sincerely feel for you. Maybe a shot in the dark- but does anyone think Lyme has been the great instigator behind my physical woes these last 5 years? Why would the crazy neuro symptoms just come on in the last couple of months? Stress with the move and new job? Ughhhh...I just want to be the me of 2010 again. My family deserves more than what I am able to be these days...

Lynchburg lime cases 2012:

VIEW IMAGE


Lynchburg lime stats 2000-2014:

VIEW IMAGE

Post Edited (Rex) : 6/29/2016 2:48:05 PM (GMT-6)

Rex, I'm sorry to hear of the accident and all the horridness that has surrounded you the last half decade.

I would also like to welcome you to an amazing community. I'm sure the officials will be around soon to give you greater guidance. I just wanted to say hello and recommend reading the "New to Lyme" thread. Some of it may be overly complicated, but you will constantly be referring back to it.

Given your timeline and story, It truly sounds to me like lyme is very likely for you. It fits like a puzzle for everyone else here the same sort of way, being hinesight discovered I think. I would recommend looking for LLMD and beginning a blood test through Igenex in Pal Alto, CA. I would also mirror Girlie with the WB for 210$. It sounds like your immune system kept it in check for a bit, you may show antibodies. I had to do the complete lyme panel for 499$ to see evidence personally. But I believe you can always add additional testing after.

Goodluck. Also I would personally like to highly recommend Buhners Healing Lyme: Second Edition. It is a beginner and physicians guide to using herbs to treat lyme disease. I'm not sure of any of the medications you have been taking, or if the Dr's you have lined up will be able to tell you much. Others who have dealt with them more will have a better opinion.

I'm sorry this had to happen to you, but it can get better!

Post Edited (Asmoline) : 6/29/2016 2:52:25 PM (GMT-6)

This does not sound like ALS. 31 would be extraordinarily unusual.
You would not fasciculate for 4+ years without profound weakness. The twitches and everything else sound like a result of anxiety and stress to be honest.
A neurologist will probably do a quick exam to see if you are objectively weak and based on that may or may not do an emg. But having seen ALS patients, they don't usually complain of twitching. This is typically a late sign that occurs after the muscle atrophy has occurred. Its a good idea to see a neurologist, but BFS is pretty common and this sounds a lot like that. Have you seen aboutbfs.com?

Blood in stool always warrants investigation. Good to have gotten scoped. This can happen after bouts of intense exercise.

The C5/6 stenosis might be something possibly worth following up on. If it got bad enough it could cause some of the symptoms you mention. If bad can be corrected by something called an anterior (or posterior) cervical decompression and/or fusion. But usually that would be for profound symptoms. If the pain or neuro symptoms are a lot worse when you move/flex/extend your neck this suggest significant disease and it may be worthwhile to see a neurosurgeon.

I don't know if its Lyme. Lyme seems to be something that can seemingly do anything.

Post Edited (JDB15) : 6/29/2016 6:16:09 PM (GMT-6)

So I think we need to be careful attributing every single symptom to lyme.
I mysef had widespread fasciculations during bouts of extreme stress and anxiety. Fair to say it can be caused by both. But I think to say its lyme disease without someone even knowing they have lyme disease would be a bit of a stretch?

If all he had was the twitching and anxiety...maybe...but not with the history, and constellation of symptoms.

Nothing to lose by being evaluated by a LLMD.

For sure - he should get other conditions ruled out...along with seeing a LLMD.

But some of the conditions - cervical spine issues can be caused by lyme...

Hi Rex and welcome. I always say "go with your gut feelings" and since you have come here thinking you may have lyme disease, let's start there.

Igenex lab is where you want to have your lyme test. The least expensive and best test that we agree on in this forum is Western Blot test IgG and IgM. Those are tests Nos. 188 and 189 on the Igenex list of tests.

Lyme has given you some horrible symptoms and they imitate and migrate. They actually suck!

I am so sorry you have lyme. But personally, do one thing at a time. I so relate to your mental fog. I had a very hard time talking until I got treatment underway.

I also had twitches, pains, etc and they are so annoying. I had an eye twitch that lasted for 2 days and I could not read.

It is good to still be active on your bike, but don't overdo it. It is also good to take a nap when you need one.

I really liked going with my body and listening to it.

I like the idea of putting good healthy organic food in my body, lots of water, detox to keep the balance of meds in - toxins out. And, I love having a journal. Just write the day, how you feel, and what did you do different. Sometimes those tiny differences can make you feel better and sometimes sicker. Good to keep track of. I also track the barometric pressure and the moon - dang if they don't mess with me. I think those lyme bugs get super excited like it is party time when it is 3 days before a full moon. I am rather consistent on that 3 day thing.

Welcome and hope you get the test and find an LLMD when your insurance comes in. It sounds like you are in Southern Cal and you may actually find one that takes insurance there. A lot of them don't elsewhere.

You had a person/friend who was diagnosed with ALS and whose symptoms disappeared after treatment for lyme disease?

If that is true that neurologist should lose his license.

And so should the Neuro that misdiagnosed me, and many others. We have been told there is no way we could have Lyme, yet those of us that have persisted and have survived to find this forum (and others) have discovered with Lyme treatment, we healed. But, those doctors are not losing their license, they are allowed to continue on misdiagnosing people and telling them that their positive Lyme test is a false positive and more. The horror stories are too many to be numbered now.

Many have had similar experiences like I had too with the misdiagnosis of MS. It just goes on and on and on. Meanwhile, the number of chronic Lyme cases, from people with positive Lyme tests, with negative Lyme tests but enough symptoms to warrant Lyme treatment anyway - just continues to grow very quickly. The new estimation is that there are 400,000 - 500,000 new cases of Lyme being diagnosed yearly.

That doesn't include what the CDC is doing with "Lyme Corps" - calling hospitals and doctors offices to make sure they are following out of date IDSA guidelines that have been removed from the NGC (National Guidelines Clearinghouse).

/nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html



/learn.uvm.edu/blog-health/lyme-disease-awareness-in-vermont



www.healthsci.jmu.edu/pa/features/lymecorps.html



www.vermontlyme.com/lyme-corps-alert/



/www.change.org/p/wilma-robinson-hhs-gov-secretive-and-harmful-sums-up-the-cdc-lyme-corps-program/u/15924851

/invisibledisabilities.org/awardrecipients/2011awards/2011-research-award-david-martz-md/


Watch this - impressive

One of my misdiagnoses was Peri-menopause.

Wow- thank you so much everyone for this wealth of helpful information. I can't say how much I appreciate it. I will order one of the Lyme tests shortly, and try to get some results that should tell a little more about what is going on. It's comforting to find a community of people so willing to lend an ear and help out others. I will keep everyone posted as I both get a neuro-checkup and get the lyme test completed. Hoping to find answers soon!

Agreed, you are very welcome!! Although, please do understand that the testing for these infections is actually quite poor. Lyme disease inhibits (lowers) the immune function, so the immune system can't produce those ever important antibodies that these tests need for a positive result. Not only that, but the tests aren't very sensitive - the ELISA and IFA miss up to 70% of those that actually have the infection and the Western Blot can miss up to 50% of those that actually have the infection.

And, that's not to mention that they are only testing for 2 of the 100 strains that are known to be in the US alone (300 different strains world wide), so many likely have one of the strains that are not being tested for.

This is why a good LLMD will evaluate you based on your symptoms - they may try to evoke a positive test just to back up the diagnosis, or they may choose to just treat you based on symptoms. Even the CDC says: "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods." Of course, that's about all they get right, though! LOL!
www.cdc.gov/lyme/

We do encourage members to get a Western Blot done though. That test reports the actual bands that you show a reaction on (either IND for indeterminate or a positive), as if there are any IND or positive bands that are specific for Lyme, then that verifies the infection even if the overall test is reported as negative.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resourcewww.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf