Does this sound like Lyme?

[chel 81]

I've been searching for answers for 7 years to my health issues and thought I had a dx but got thrown for a loop when my new doctor suggested Lyme or a bacterial infection/co-infection. He is Lyme Literate so is in his area of expertise and the more I research I think he's on the right track but am just unsure since I don't have the typical symptoms. I'm going to be getting the Igenex test soon to confirm but would appreciate any help in case the test is inclusive on where to go from there. I'll try to keep my long story as short as possible.

I got mono in 2001 and a couple months into it I felt worse than I did when I first got sick and started getting terrible digestive issues (massive constipation), acne, periods ceased, and uncontrollable weight gain of 35 lbs in a few months. Coupled with the fatigue from the mono it was terrible. Dr after dr thought it was my thyroid but said I was too young so did one test then sent me on my way with no answers. Finally 3 years later I was dx'd with hypothyroidism and low progesterone and between the two hormone replacements I was back to ME for almost 3 years.

Then in 2007 while walking in a field near my home I got eaten alive by mosquitoes. The next day my legs felt strange and when I got home from work and pulled up my pant legs I saw they were swollen HUGE. Took some benadryl, elevated them and assumed the numerous bites were just too much and it was a simple histamine reaction. However, from that point forward my legs continued to swell each day by the end of my work day. It did this for several weeks. A few weeks in I started getting really fatigued, started getting some digestive issues, and in general just felt "off". I also started getting these weird hot flashes which I've always been more cold blooded. I thought perhaps it was my thyroid going off so slightly increased my dose but it didn't help. Within a month I had to go part time at my job because the fatigue was getting so terrible. I also started getting pain near my kidney/adrenals and bad muscle "fibro like" pain. Blood work showed elevated liver enzymes and a high reverse t3 but not much else was tested. Within 1 more month I had to leave my job as my body fell apart. Within 3 months I had gained 50 lbs despite no change to my running routine & diet, kidney/adrenal pain continued, hot flashes, digestive issues much worse, insomnia, developed erythmelagia in my feet (had raynaud's before but this was new), periods coming very frequently and heavy, low WBC with high neutrophils & low lymphs, high liver enzymes, lymph nodes in neck swollen, developed heart palpitations, lipomas & ganglion cyst, hair changes color & texture, and of course massive fatigue. These symptoms have continued for the most part for 7 years except my low WBC now has high lymphs and low neutrophils (also have some variations in other CBC labs that are randomly off), I found I have food intolerances to just about everything under the sun, have had petechial rashes, and my vision is constantly changing needing new rx often. In 2009 my doctor tested me for mono since I had it in 2001 and were thinking perhaps this was all caused by that. Sure enough my EBV levels showed a relapsed infection but it's been active this whole time. My new dr said that is common when the immune system is compromised so it's actually a symptom rather than the cause. I've been on a strict diet for my food intolerances and it has helped get me part way better but the next thing I know I relapse again and have to start the process of building up my immune system all over. It's beyond frustrating!

The thing that confuses me is that I have ZERO neurological issues (besides some short term memory stuff but that can easily be simply because I'm sick and it's a coping mechanism). I also have zero joint or bone pain. I have muscle pain that comes and goes and get high lactic acid build up but no joint issues. I also have not gotten any headaches or fevers. These are alway the most common things associated with lyme so I would think I'd at least have 1 of them if that's what I've got. I know gastro issues is common which I've got big time but also had issues from being hypothyroid so not sure if it's more related to how whatever this is is effecting my endocrine system and keeping my thyroid from fully functioning.

Sorry for such a long story but just hoping for some help figuring this mess out.

[JackieCalifornia]

You're quite welcome ... There are so many variables when it comes to ticks and other bugs and the stuff they carry that it's not surprising the docs get confused too.  Just roll with the symptoms and the doc's take on the situation and any test results, then add a really really big grain of salt, and take your best shot, with a good doc's advice along the way.  

It's bad enough that the ticks and other bugs and bacteria confuse the human immune system .... then when the *docs* get confused that really messes it all up.  The world of medicine just isn't as tidy as the docs try to make it, esp. in a new and developing field of medicine.  

Just roll with it, and you'll figure it out, but really ... do find a good Lyme doc, because that's what you'll need to know as best as anyone can what you have and whether what you got six years ago could still be in play. Lyme disease and syphilis have many similarities, including that both are persistent and nasty infections, both are curable, and both have or are confusing to many docs just because the infections are so tricky.  

Bottom line:  don't overthink the issue.  Just deal with it.

[chel 81]

Thank you JackieCalifornia :-)

I will keep an open mind about the possibility of a tick. I was told maybe that perhaps I'd been bitten years/months etc before and the mosquitoes were simply what caused it to "activate" so maybe that's what happened. I just haven't heard of a reaction from a tick less than 24 hours after the bite- can that happen? The initial reaction I experienced with my legs swelling was only 1 day after getting all the mosquito bites so that's where I'm fairly certain I didn't have a tick too since the reaction seems a little fast for that to be the case. Then again I'm still learning a lot about this stuff so maybe some people have had that quickly of a response? I just wish I had pursued checking on Lyme years ago when someone mentioned it to me over 6 years ago. I just didn't think it was a possibility since I only knew 1 person at the time who had Lyme but she got it on vacation.

[JackieCalifornia]

You say above:  "I'm fairly certain that I was not bitten by a tick because all of my symptoms began after the mosquito bites which I did see them swarming around us."

I'd encourage you to keep an open mind (for now) about whether or not your have been bitten by a tick ... the ticks that carry Lyme are the size of a tiny dot, not big and fat like a dog tick.  And insects don't care if you've been bitten by something else -- it's more of a free-for-all.  Getting bitten by Bug 1 does not stop Bug 2 from biting you too -- there's no 'professional courtesy' among insects.

Whether you have one infection or two or three separate infections isn't based on the odds ... so just follow the data trail and see where it takes you.  After seven long years, you deserve a full work up and evaluation.

Many of us here have more than one infection -- and each one often needs different meds to get rid of them, so treating only one of the infections wouldn't get you well.  So ... go for it and get this behind you once and for all!

[chel 81]

Thank you both for the responses!

Yes it's been 7 years of struggling but when your life is falling apart and you can't move forward to function like a "normal" person it's either keep searching or give up entirely and I know something is going on that there is an answer for!

I'm fairly certain that I was not bitten by a tick because all of my symptoms began after the mosquito bites which I did see them swarming around us. My doctors are running the Bartonella and Babesia tests because they are leaning more towards that being the better possibility if in fact it was caused by mosquitoes (since to date mosquitoes have only been shown to carry Lyme but so far haven't been proven they can transmit it). Unfortunately though I was told either test is not very reliable :-(

At this point I'm just hoping I will get a definitive answer to figure out what is going on. I have symptoms of a lot of different things but it really doesn't make any sense that ALL of these symptoms would start around the same time and not be connected- no way I suddenly ended up with 5 or 6 completely separate disorders/illnesses all at the same time.

Thank you both for the encouragement!

[Ricobord]

I am so glad you're seeing a Lyme-aware doctor! If you do have tick borne disease(s), you've suffered long enough. Definitely let us know about your test results.  If you do have Lyme, it's unlikely you'll be "CDC positive" due to the length of your infection. But hopefully, if you do have it, you'll show Lyme antibodies.

I've had Lyme for over 8 years, and I've never had joint or muscle pain. I didn't get an EM rash, either. It was 6 years before I was diagnosed. I went through a dozen doctors and a hospitalization before I finally figured it out myself and went to a LLMD.

Negative Lyme screening tests in blood and CSF led doctors to tell me I did not have Lyme. A negative Babesia test (actually a malaria test, which misses Babesia far more often than it finds it) led one doctor to tell me it was "too unlikely" that I had Babesia, in spite of the fact that Babesia tests are well known to be poor. Of course they had no alternative diagnosis for me, but it certainly wasn't Lyme and Babesia!  Hah.

Turns out I had bad cases of neurologic Lyme, Bartonella, and Babesia.  I have had a lot of GI issues. I've since realized that every single organ in my body has been affected by one or more of these infections.  Even the reproductive ones, thanks to wild hormone swings.

Your muscle issues make me wonder about Bartonella. Bartonella can cause many of the same symptoms as Lyme. I suspect there are a lot of people who think they have chronic Lyme, but don't show signs of it in testing and then don't get better on anti-Lyme antibiotics.  Bartonella can add to the fatigue.

Some people's immune systems clear Bartonella if they get it by itself. It can also go under the radar and become an asymptomatic infection that becomes a problem later.  Or, if you were already immunosuppressed with Lyme, a Bartonella infection would be a real problem.  Bartonella can be cured right after infection using Doxy. But once it's established, Doxy doesn't work. Neither do the penicillins.  

Mosquitos transmit Bartonella. Ticks seem to transmit it, too. They carry it, and lots of Lyme patients have it, but the "official" story is that there's "no proof" that ticks transmit Bartonella to humans. It is not included in the lists of tick borne disease (except by ILADS). To me, this is part of the medical establishment absurdity about tick borne diseases.

Your weight gain makes me wonder about Babesia. When my doc started treating me for Babesia, I actually got much sicker. There was one week where I was miserable and couldn't eat due to stomach pain and GI bloating, and I still gained a few pounds. I'd never been so bloated in my life. Babesia also causes debilitating fatigue.

Lyme can make people either lose weight or gain weight despite efforts to counteract it. I was slowly gaining weight before I knew what was wrong with me, and I've been up and down up to 20 lbs. I've heard of unexplained 50-60lb weight gain in others.

Lyme does indeed go after the thyroid in a lot of people. The thyroid has lots of connective tissue and some people experience real damage.  I read of a few (mis)diagnoses of Hashimoto's in people who later learned they had Lyme.  Sometimes it's gone after effective Lyme treatment.

Some have low thyroid because Lyme is messing with their hormone balances. Most doctors don't know that Lyme can affect the thyroid. I've heard of patients who were told, "Lyme doesn't do that."  (Wrong)

I got a really bad case of Mono about 5 years before I got my tick borne diseases. I truly felt like I'd had the life sucked out of me. It took a year to not feel sick anymore. Later, when I was having my relapsing/remitting Lyme fatigue attacks, it felt exactly like Mono. (I tested negative for EBV during one bad attack.)

I've since read that when Lyme suppresses the immune system, dormant viruses can somehow sense that it's a good time to come out and start reproducing again. I'm sure a relapsed EBV infection adds to the misery.

Lyme sometimes has unusual presentations. I read of one case of a teenage boy with headaches and testicle pain as his only symptoms. I've read that either Lyme or Bartonella can present with only neuropsychiatric symptoms.  I've read of others with primarily migraines and GI problems.

Lyme is a huge epidemic in part because of the narrow, oversimplified definition of the disease (and bad tests).  Health officials still tell doctors outside of the New England area not to treat a positive Lyme test if the patients doesn't have observable Lyme symptoms, such as swollen joints or the EM rash. Despite their own scientific studies showing false positives are very rare, they still persist in an inexplicable fixation on positive tests and the rheumatic (muscle & joints) symptoms of Lyme.

I encourage you to call your doctor's office and ask if they ordered tests for Bartonella and Babesia, too.  I hope you get some answers soon!

[JackieCalifornia]

Seven years!  You are a very strong person to keep searching for answers, and that is a wonderful trait to have.  

Clearly something (or multiple somethings) are going on, and your docs so far haven't seen the big picture.  Because medicine is so fragmented into specialties these days, docs often have a hard time keeping all the possibilities in mind.

I see you are in Colorado, and Lyme is certainly found there.  I just searched -- colorado lyme -- and there are sources who could guide you in finding a Lyme doc and a patient community who can give you support.

"Lyme" ticks often carry other unrelated infections (generally called as a group 'co-infections') that confuse the symptomatic and diagnostic aspects, so when docs *don't* see a classic case of Lyme (round red spreading rash, tick attached for X days, etc.), they often blow off the possibility of Lyme etc.  I never saw a tick on me or got a rash, but I had Lyme and a co-infection, so I'm a prime example, and I know others who were the same way.

You say above, "The thing that confuses me is that I have ZERO neurological issues (besides some short term memory stuff but that can easily be simply because I'm sick and it's a coping mechanism)."  Don't dismiss your symptoms as insignificant or unrelated. Short term memory problems ARE neurological issues, and any medical basis for them should be ruled out before dismissing them, imo.  After so many docs have blown you off, I know it's common and easy to ascribe your ailments as being 'in your head', but don't go there until you have exhausted all other possibilities ... and physical symptoms and manifestations are NOT so easily blamed on being just in your head.  Docs sometimes go there because they are out of ideas, but it doesn't make it true that it's your imagination.

Also note that some of us do NOT ever have much in the way of brain fog or neurological symptoms -- Lyme can manifest just in the rest of the body and cause physical aches and pains.

Lyme is also well known for messing with the whole endocrine system, and that shows in different ways in different people, with thyroid problems, for example.  Again, a Lyme specialist knows this kind of stuff.

Don't worry about not having joint or bone pain.  Lyme affects everyone differently.  There is no hard-and-fast list of Lyme symptoms, particularly when the 'Lyme' ticks also carry other diseases that have their own set of symptoms.

It's not necessary to have headaches or fever.  I had neither of them.  I just felt generally lousy .... I described it as a cross between the flu and a hangover.  I had no fevers or joint or bone pain.  I had unpleasant but relatively mild aches that came and went, as yours do.  

'Brain fog' (unclear thinking process) was also big for me and others, but everyone is different, so don't hold yourself to a checklist of symptoms as all being necessary to getting a Lyme diagnosis.  Also remember that the co-infections the Lyme ticks often carry have their own set of symptoms that complicate the diagnostic picture.

You say:  "The thing that confuses me is that I have ZERO neurological issues (besides some short term memory stuff but that can easily be simply because I'm sick and it's a coping mechanism)."  Lyme hits some people physically and others get 'brain fog' -- while some of us get both.  There is not one single set of symptoms, so let that idea go!  I had some brain fog, but someone else in my family (who also had Lyme and babesia as I did) had no brain fog at all, just a little fatigue.

You say, "These are alway the most common things associated with lyme so I would think I'd at least have 1 of them if that's what I've got."  Nope; Lyme is the new 'great pretender, which was the tag given to syphilis a hundred years ago, in that syphilis mimicked other infections.  And guess what -- the bacteria that cause Lyme are in the same family as the bacteria that cause ... syphilis.  Syphilis is easily overlooked by docs, as is Lyme.

You say, "I know gastro issues is common" -- sometimes, but not always.  I didn't have any, nor did others I know personally.

You also say you've "also had issues from being hypothyroid so not sure if it's more related to how whatever this is is effecting my endocrine system and keeping my thyroid from fully functioning."  Lyme can indeed mess with thyroid.  I was on thyroid supplements for a while, but when my Lyme was treated, my thyroid came roaring back and I didn't need them anymore.  That's now been several years ago.

So, bottom line:  I'd find a good Lyme doc and get an evaluation from the ground up, without assumptions or past decrees from other docs clouding the picture.  Keep us posted!