I have read other stories similar to yours, although perhaps not for as long as you. Many people continue to decline and develop new symptoms over time.
I have never had joint or muscle pain, either. We're atypical in that sense, but not as rare as doctors may think. In my months of research and reading, I have developed my own theory that people with neuroborreliosis without joint or muscle pain and without arthritis are far less likely to get a bulls eye rash. It must have something to do with our immune systems and what strain of Borrelia we got infected with. In hindsight, I believe I had a solid red rash that I thought was ringworm on my leg. It went away, so I forgot about it.
It sounds like you have predominantly neurologic symptoms. That's how mine started, with the fatigue, brain fog, and detached feeling. I ad that for a year, along with shortness of breath, befoe other symptoms started showing up after I was givrn steroids.
However, I also have Bartonella. With both, you're more likely to have neuro-psychiatric symptoms and significant GI issues. I have both. I developed anxiety, mild obsessive thoughts (especially about convincing others how sick I was and finding a diagnosis), mental confusion, word finding problems (my family still chuckles when I say the wrong word), and getting lost while driving to familiar places.
Every symptom you describe is known to be caused by Lyme. However, I've heard that every patient has their own constellation of symptoms and disease progression. There are definitely known patterns, but a long menu of things Lyme can do. You may never find someone with the exact same story as you, but you do have a lot of overlap with other neuroborreliosis cases.
I would encourage you to get tested for Bartonella as well. I tested positive even without the red striated rash and sore soles that are common with it.
That's terrific that you've seen a Lyme Literate Medical Doctor. I hope your journey to wellness goes smoothly!
"But my question is: Has anyone else ONLY had symptoms like this??"
Yes, indeed. Me, in fact.
Lyme is called the 'new great imitator', after the OLD great imitator, syphilis. Both are caused by spiral-shaped bacteria and have the ability to give a variety of symptoms in each of us, thus 'imitating' other diseases. About half the time, the Lyme ticks also carry other diseases that have their own set of symptoms, and that just clouds the diagnostic picture. Combine that with personal immune system activity or inactivity due to our genetic make up, and it's a real food fight. No wonder docs are confused, eh.
I think I got bit by a tick several years before I got REALLY ill, and during those years had just annoying symptoms: odd fatigue, sore soles of my feet esp. when I first got out of bed in the morning, crankier than usual, just out of sorts. Easy to blame it on falling arches, over-work, hassles on the job, blah blah.
Then I suddenly got very ill while back East on a family trip to look at colleges, tromping around lots of leafy campuses and paying no attention to the possibility of Lyme ticks. (I mean, who does, till we live through Lyme??)
I have described how I felt as a combination of a bad case of the flu and a hangover. Tired, confused, forgetful, body temp all over the place, crankier than usual, couldn't reliably organize my way to the grocery store and back, much less do actual, useful work at my job. At some point, I started having muscle cramps, the kind that make you jump out of bed in the middle of the night because the calf muscle has seized up. I gained weight, because I was eating trying to beat the fatigue, and my metabolism was messed up to boot. Some days I was better than others, but never really okay, much less my old hard-driving self. I got used to the constant hangover/flu ... sort of.
I finally realized something was really off, and began a parade through 20+ docs of various kinds. Having read that you need to tell the doc how you're feeling by using examples of the impact on you, like things you used to do that you can't do now. I tried that, and except for one doc, they all figured I was just an unhappy camper who needed a shrink. That one exception looked me square in the eyes and said, "I know you are ill. I just don't know what it is." I held onto that through the parade of clueless docs, and finally one of them tested me for Lyme.
The test came back mildly positive! But the tests are lousy, and only a doc who really understands Lyme (and most of them don't) can put the pieces together. The doc who ran the test told me I couldn't possibly have Lyme, and blew it off. But I took that test result (ALWAYS get and keep your own set of ALL test results and lists of medications) and found a Lyme specialist. I was diagnosed with Lyme and babesiosis (a common coinfection of Lyme that is similar to malaria), and was treated over the next year+.
It can be a long road, but it's worth it. I am still in the throes of trying to sort out the mess my life became while I was so sick, but making good progress.
I never saw a tick or had a rash, but that bruised ring you got that spread out from the center is, from what I read, very indicative of Lyme. Lyme also manifests itself in a wide variety of ways in each person, due perhaps to different strains of Lyme and to each person's own immune 'ecology', if you will -- never mind the grab bag of symptoms the various common coinfections add to the mix. It makes diagnosis very difficult for docs not wise to the ways of Lyme and its rude little friends.
The ultimate problem is the war in the medical community over how easy or hard it is to get Lyme, how to test for it, how reliable the tests are or are not, whether coinfections are important to look for, and finally: how to treat it. Most docs are like the one who looked at your bruise/rash and have no idea what they are seeing. A failure of imagination.
There is nothing in your post that argues against Lyme, imho. Could you have parvovirus? Sure. As the years go on, we each are exposed to and infected by lots of things, some of which go away, some of which lurk in the background forever -- like herpes, for example. Lyme does one of those hiding acts ... it creates slimy sanctuaries in the body for itself and seems rather dormant for long stretches of time in some people, only to rise up when the immune system is weakened by another illness. Lyme also has long loopy life cycles, and seems in many of us to flare up at certain seasons.
The whole endocrine system can also be messed around with by Lyme -- the bugs like it chilly inside, and body temp can be chronically low in some of us. The hormonal impact can be enormous, and it sounds like perhaps you are experiencing that. Docs not familiar with Lyme focus on the symptom and try to treat it alone, without understanding or acknowledging the underlying illness. It would be like telling you to stop wearing high heels because your feet hurt, while really you have a broken foot. Diagnosis by misdirection.
Another aspect of the endocrine impact is mood and anxiety -- a huge factor in Lyme for many, if not most (or even all) of us. You are not alone there, either. And alcohol intolerance, that too.
In short, there is nothing in your post that argues against Lyme that I can see. Note that I am NOT medically trained, so this is just the product of my own battles and reading. In your situation, I would find my way to a Lyme specialist pronto. If it's not Lyme and/or coinfections, the Lyme doc will tell you.
You sound strong mentally and your body sounds like it is holding up admirably, but time to call in the reinforcements. There are several ways to find an LLMD, which is not an official title but instead patient shorthand to denote a doc who thinks bigger thoughts about Lyme -- LLMD being short for 'Lyme-Literate MD'. No doc will call him/herself an LLMD.
The main voluntary organization for LLMDs is ILADS [dot] org, short for International Lyme and Associated Disease Society. The website is full of good stuff, but don't be overwhelmed by it. They apparently now have a referral function, if you send an email to
contact (at) ilads (dot) org
and tell them what geographic area you are in or can easily travel to. Like, 'within 100 miles of Boston', or whatever.
You can also simply search online, such as
and see what pops up.
If you'll tell us what geographic area you are in and can travel to, someone here may have some suggestions.
Fair warning, there are some quacks out there, or at least docs who seem like quacks to me, because Lyme is the wild West of medicine and chaos reigns. No wonder mainstream (nonLLMD) docs think it's all a scam.
But no, Lyme is for real, and even if you don't have it, I would in your situation want to rule it out.
Your email is very clear, and I would suggest you take notes or a printout of your post here with you to the doc, so that you don't forget what you want to convey. Brain fog is real, and stress can make it worse, at least in me.
Stay in touch, let us know how you do, and if we can help --
Best wishes to you -- hang in there. J.
Thank you so much for replying! It is really good to hear other people have had Lyme without the classic symptoms.
" I ad that for a year, along with shortness of breath, befoe other symptoms started showing up after I was givrn steroids."
What symptoms started after you were given steroids?
My symptoms seem to come and go for anxiety etc. They will come and go without much notice but lack of sleep used to really aggrevate it.
But do people really have Lyme this long without getting worse? This I'd love to know. I guess with that said though, my 'getting worse' would be that my psychological symptoms did get MUCH worse over the years.
The Fog and disconnected feeling started first, then the social anxiety and OCD. Then I had a year of prolonged intense stress and it seemed like my body/ mind collapsed from it and wasn't able to fight back like a normal healthy system would. That's when the head exploding 'fight or flight' reactions would occur that lasted weeks at a time. Tried Yoga, meditation, nothing.
I'm not sure if other people's Lyme was aggravated by stress or not like that...?
Here is what my doctor is testing me for as far as blood work. Just got it done today. This look pretty standard?
1) fibrinogen test
2) thyroid peroxidase
3) Lyme, Western blot serum
4) antithyroglobulin antibody test
5) CD57 panel
6) triiodothyronine, free, serum test
7) Reverse T3
8) basic metabolic blood panel
9) cbc w/o diff w/o pitt
11) tsh, 3rd generation
12) vit D 25 hydroxy
Then I have 4 kit tests to do that test different things from yeast, fungus parasites etc in my gut to adrenal problems.
I think one of the hardest things with Lyme, or any hard to diagnose disease, is just wanting a diagnosis and the fear that if it comes back negative, it discredits your symptoms in the eyes of your friends and family. I know something is off, and I just want answers. It's so hard...
Wow! I like your doc already.
The CD57 test, sometimes called the 'Stricker panel' is a test only LLMDs use. I can't tell you how it works, but it's a test that nonLLMDs don't use at all. You can look it up online if you are interested.
and PS ... there are no 'classic' cases of Lyme. That's a myth put about by the docs who are Lyme deniers: they want to build a fence and let in only those that THEY deem to really have Lyme, but unfortunately Mother Nature didn't sign on to that plan. The strict standards to diagnose a case of Lyme (applied to everyone by the IDSA, Infectious Disease Society of America) were designed by the CDC [Centers for Disease Control in Atlanta] to detect only slamdunk, absolute, gigantic cases of Lyme for epidemiological purposes, to ensure that the statistics on the spread and incidence of Lyme were pure and reliable.
The IDSA unfortunately took those very high standards and adopted them as *diagnostic* standards, so that they leave behind a lot of people who really do have Lyme. Thus the requirements to see a tick attached for at least X days, a circular rash, etc., which were meant to gather tight data on the spread of Lyme, are being overapplied and exclude a lot of people who really DO have Lyme. The IDSA still holds to this rule, but recently, I hear, the CDC backed away from that standard. A little progress, perhaps. A little.
As said before, I'm NOT medically trained, but any doc who tries to give you steroids knowing you do or may have Lyme is someone I personally would stay away from. Steroids suppress the immune system, which is the opposite of what needs to happen in treating a bacterial infection like Lyme. There is a theory at the IDSA that after a couple weeks of antibiotics, any continuing Lyme symptoms are the result of your immune system overreacting to a now-cured infection, and therefore steroids are called for. The only problem is: the IDSA is ignoring that Lyme isn't cured with a couple weeks of antibiotics (abx), for reasons specific to the slow reproductive cycle of Lyme bacteria. Like TB and leprosy, which bacteria also reproduce slowly, treatment needs to be prolonged (e.g., 18 months is standard in TB) because the abx need to hit the bacteria when they are reproducing and their cell walls are disrupted.
When you have had Lyme for a while, it's considered chronic, and your immune system can hold it in check and let the disease sort of do its thing at relatively low level. When you have other stresses or illnesses, tho, the Lyme bacteria come out to play because your immune system is busy taking care of the OTHER illness. You sound like you have a strong immune system to be carrying on daily life, tho with difficulty. That is good news, because it means your immune system is still fighting the good fight. That's why it's called 'chronic Lyme' -- just hanging out in the background, doing its thing.
I was pretty sick too, and my LLMD was surprised when the (not very accurate) standard Lyme tests (ELISA and Western blot) came back positive, because considering how long I had been sick before I found the LLMD, it would not be unusual for my immune system to have given up and stopped making the anti-Lyme antibodies that the ELISA and W.blot tests look for. That's why there are so many false negative tests with ELISA and W blot (i.e., you have the illness, but the tests don't pick it up).
There is another test, called PCR, by IGeneX labs in California, which looks not for your immune system's variable reaction to Lyme, but for the actual Lyme DNA bits in your blood. LLMDs including mine often use that test, because the results are more accurate than W. blot and ELISA. Your doc may wait to see if the W blot and ELISA are negative. PCR ain't cheap, and it's not necessary if the other two tests are positive.
Something that helped me with muscle cramps and crankiness were magnesium supplements. Any kind ending in "-ate" is supposed to be most absorbable. I still take a brand with three different kinds in it: malate, orotate and aspartate. The Lyme bacteria use up magnesium in their creepy little reproductive process, so I read, and when your magnesium levels get low, it can produce the anxiety symptoms you describe, as well as heart irregularities. Blood tests for magnesium deficiency are not very useful, because most magnesium is stored inside cells, and it's only when the levels in the cells are fully depleted that the blood levels start to go down, so the tests are meh. If you start taking Mg supplements, be sure your doc knows so he can take that into account.
Sorry again to run on. You're headed in the right direction! Keep us posted. J.
After only a few weeks of my shortness of breath, I went to my PMP and she thought it was my allergies and gave me an inhaler It helped a bit. But over the next few months, I got worse. I went back in, very out of breath, and she thought I had asthma and gave me 3 asthma meds, including an inhaled steroid, and a shot of prednisone to "calm my immune system down". That's exactly what you're supposed to do with asthma, the problem is that I didn't have asthma. (Note: I'd had a crummy, fatigued, low energy feeling for a year at this point, and 6 months of worsening dyspnea.)
Within 4-5 days, my breathing had gotten worse, and I became anxious, confused, forgetful, and almost dizzy. I also had worsening ringing in my ears and light sensitivity. On the way to the bank one day I was feeling agitated and I lost the safe deposit key, something I would normally never do. (I still don't know where I lost it.) I couldn't explain what was happening to me but it was frightening. My doctor's office and an urgent care clinic both told me over the phone to go to the ER, as I couldn't say more than a few words without having to take a breath.
They did a chest x-ray and CBC panel and then gave me a breathing treatment with albuterol. It helped a bit, but not as much as I had hoped. The ER doc was very kind, and said I probably had asthma, but he wasn't sure as he couldn't hear me wheezing. He said to see a pulmonologist and gave me 4 days of oral prednisone. That's when my odyssey of specialists began.
Over the next 3 months, I developed dozens of new symptoms one after the other. I went to an allergist, an ENT, a pulmonologist, a neurologist, and then ended up in the hospital where I saw another neurologist, an internist, and a GI specialist. Apparently, the ID doc wouldn't even come see me as I had a negative Lyme test in my blood screening test and my CSF already. They insisted I didn't have Lyme and told me to go see the MS doc at UCSF, even though they felt I didn't have MS either. I asked for a referral to a Lyme specialist to either exclude or confirm it and the internist refused. I was confident I had Lyme, so I paid out of pocket for IGeneX testing and the LLMD where I got diagnosed and started my treatment.
I am convinced that the steroids were part of the reason I tested negative for Lyme. The other conributions to my negative tests are that I might have the European version of Lyme (which is genetically different), I had a week of penicillin when I first got infected which interfered with my antibody development, and I had had it for 6 years. Over time, the spirochetes move out of the blood into the tissues. As the body sees fewer and fewer bacteria in the blood, it reduces antibody production, sometimes low enough not to test positive. It's the sickest people who test negative, as their immune system is not fighting it much anymore.
Plus, the CDC interpretation of the tests is for statistical tracking, and was not intended for diagnosis. Even though I was CDC "negative", my LLMD says I was positive on a Borrelia specific band on my IGeneX tests. However they told me that some of their patients truly look negative on the tests, and they diagnose them primarily by symptoms and history, what's called a clinical diagnosis.
Because my shortness of breath was so apparent, I never had to deal with a doctor telling me to see a psychiatrist. The only time I heard "stress" as a theory was from the pulmonologist when she was throwing out ideas for why I couldn't breathe well, but tested "normal" on my pulmonary function tests. She also threw out Sjogrens, and Chronic Fatigue Syndrome as possibilities, but neither of those was a fit for my symptoms either. It was the next doc, the neuro, who discovered my brain lesions and a good sized cyst in my liver. That's what really excelerated my diagnostic process and got doctor's urgent attention. It was searching for causes other than MS for my brain lesions that I came across Lyme Disease.
I still think it's just wrong that the radiologist didn't mention Lyme Disease as a possibility on my radiology report. But then there's so much that's wrong about Lyme Disease in the medical community.
I'd encourage everyone with an experience like this to complain to the CDC. They mostly ignore complaints, although I did get an acknowledgement insisting that they don't endorse treatments (which is absolutely untrue), but if they get enough of them, eventually they'll pay attention. The first step is to get them to change their recommendations on testing, as the current two step process is devastating for people with Lyme who test negative, as we don't end up getting the diagnosis we need and progress on to more serious illness.
Have you found the blog of the doctor in Maryland who treats Lyme? He doesn't call himself an LLMD, just a family physician who is "Lyme aware". His blog is very interesting and informative.
Just Google "LymeMD Blog" and you'll find it.
I googled BRAIN FOG and ran into your post from 2012. I would like to know how you are doing. I have recently realized that I had a brain injury 30 years ago, it did not affect my memory or cognitive abilities but causes clumsiness and very low energy among other symptoms that are mentioned in your post. Did it turn out that you did have lyme? Have your symptoms improved?
You describe what is happing to me 100% the same 3 months ago this brian fog hit me I felt detached from my body I felt as if my mind went blank like there was a fog inbeteween my thoughts I had truble I feel like I can't think like the people around me are not really there not much body joint pain at all I'm a week into antibiotics for lyme I was wondering if you recoverd and what is was that was effecting you if treated how
Welcome to MedHelp Lyme --
If you don't receive a response to your post above, it is likely because the thread is now several years old and may not get a lot of pageviews.
But welcome! Glad to have you hear -- let us know how we can help.