Hi everyone. I've been reading various posts in this forum which have been very helpful and affirming to me in the past few weeks. After a very discouraging visit with my primary care physician yesterday, and after a major health crisis two weeks ago (was in the ER (for the second time) on 11/17/17 with a severe, acute chest pain, severe swelling of my right hands, and debilitating fatigue and brain fog), and dealing with so many unknowns, I've decided it's time for me to reach out.
The short story is that I've been sick for over a year, and I think that I have Lyme disease. I'm not getting the kind of support or help that I need from my primary care physician (I know that is common) and I'm feeling very frustrated, desperate, and isolated (in addition to feeling beyond awful from being so sick). I was tested and am positive for reactivated EBV (numbers are below, along with list of symptoms). I haven't been able to work in almost two weeks due to poor health and crippling fatigue/brain fog. I own and operate my own business, which requires both physical and mental stamina, both of which I am lacking. I don't know what I'm going to do to survive, and that is of course very stressful in addition to wanting nothing more than to be well again.
The long story:
My symptoms began in late October 2016, with pain in my right shoulder, like a big knot. I've always been very physical and pretty active, so I was no stranger to muscle knots. This one seemed different, though. First of all, it came out of nowhere, as in, I couldn't remember any physical activity that would have caused it. Thinking it was just a bad knot, I lived with it for a long time before seeing a doctor about
it. When I finally did go to a doctor, it was to an Urgent Care clinic because I didn't have a PCP at the time. Of course, this wasn't an optimal solution, as urgent care clinics are always very busy... but I didn't know what else to do, it had finally gotten to me. I remember how the pain evolved, and at times it felt like something was inside my shoulder, deep within the muscle between the blade and my spine, trying to get out. It was itchy and burning.
The doc at urgent care prescribed steroids and muscle relaxers and referred me to an orthopedist. The orthopedist diagnosed me with SICK scapula syndrome and prescribed more muscle relaxers and PT. It was around that time, when I started PT, that my multi-systemic symptoms began. The morning stiffness began, severely in my neck, shoulders, and hands. I had migratory joint pain and swelling, stiffness, foot pain, hair loss, numbness and tingling in my right arm which then occurred in other areas, like my left arm and legs, extreme sensitivity to cold (I have Raynaud's, but it has been worse then ever -- worried about
losing a digit it's so bad now, even when it's not even cold. In the summer, I found I'm also very sensitive to heat), extreme fatigue, difficulty sleeping, trouble concentrating... those are the big ones I remember from last winter. I kept a symptom log at the time, and to revisit it now knowing what I do about
Lyme is very eye-
opening. I currently have the majority of late-stage Lyme disease symptoms, in varying degrees, but mostly severe and constant.
After my last trip to the ER in January, I saw my PCP who referred me to a rheumatologist. My appointment wasn't for something like five months later, and a friend I worked with got me in at a different office which has good credentials. At any rate, my first appointment was in March 2017. The doctor examined me (fully dressed) and ordered lab work and X-rays. I remember riding away with my mother that day wondering if they were going to test for Lyme, but for some stupid reason, I never called to ask. They didn't test for Lyme, and my lab results were for the most part completely normal (I have a very low RF, which had been discovered by previous blood work at my PCP). Despite the lab results, my rheumatologist was convinced I had a mild case of RA or lupus and he diagnosed me with undifferentiated connective tissue disease. He started me on hydroxychloroquine (200mg 2x day) and prednisone (5 mg 1x a day for 1 month, 2.5 mg 1x a day for 1 month).
Not surprisingly (now that I know steroids are bad for LD), I felt much worse after starting treatment. I was dealing with crippling fatigue and brain fog -- especially bad all through May and June. After stopping the prednisone, I remember I didn't start to feel better until mid-July. In all of this, I haven't felt truly well in over a year. Anytime I thought the treatment (hydroxychloroquine) was working, it was really just because I didn't feel quite as awful as usual. This went on all summer, with cycles of slight improvement while feeling really awful.
I just kept going, taking my diagnosis at face value, thinking the treatment would help. This past September, after experiencing recurring "strange smells" all summer and being extremely hypersensitive to smells (garlic, smoke, cleaning products, perfume, etc), I went to my PCP complaining of a sinus infection. She put me on antibiotics and the strange smell went away and I felt a little better for a few days. After a few days, the smell came back. I called the doc and they got me in with an ENT specialist. Turns out that two of my sinus passages on both sides were essentially closed, and I found out I'm allergic to a whole bunch of weeds and grasses in NYS. He recommended a procedure, a sinusplasty, to
open the passages. I reluctantly agreed, thinking if it helps, great.
The procedure was awful -- if anyone out there has had one, you know. The doctor said I had more anxiety than most of his patients - I wonder now if my level of anxiety was related to other underlying issues. Now, knowing what I know and thinking what I think, I think that a procedure that literally cracks
open the cartilage in your face probably isn't the best route with someone with a major infection (i.e. LD, EBV). It took longer than I expected to recover (over a week), but the nurse said it was normal when I called. I went back for a follow up with the MD, and he said it was looking good.
about
a week later, I had the weird smell again, and my face was very swollen and puffy, especially around my eyes. I called the ENT office and saw their PA, who suggested it was likely allergies. She prescribed Claritin and prednisone, high dose for a short period. At the time, I had put Lyme disease way out of my mind, and I also didn't know that steroids are bad for LD. I personally don't like steroids anyway, but because my face was so puffy, I decided to take them for a few days.
As I've mentioned, I haven't felt well in over a year, with brief periods of feeling a little bit better (i.e. not so horrible). It pretty much after my sinus surgery in September that my health started to deteriorate even further. I had a follow up with my rheumatologist on 10/10/17, and I told him that I was still having issues with joint pain, etc (especially in my right hand, and as I'm writing this I'm remembering on the drive I was experiencing malaria flushing, a common symptom of mine, as well as red ear lobes). Anyway, his solution was to add another drug to the mix -- Methotrexate. Here I am, suspected to have a MINOR case of RA or lupus, and he wanted to put me on Plaquenil AND Methotrextae? Seems extreme. I don't really like taking any medications if I can avoid it, so I was hesitant and skeptical. He said that he would need to prescribe folic acid, too, and I asked if it was because Methotrexate affects your hair (I'm already experiencing hair loss -- first noticed in Dec. 2016, one month after initial symptoms, and it seems to be accelerated by the hydroxychloroquine, and it has become severe just within the last three weeks, which I think is due to illness. I'm almost bald on my crown and at my hairline. For anybody, this would be serious, and as a 32 year old woman, it's devastating). When I asked him about
the metho. and hair loss, he said no it doesn't affect your hair, it can damage the liver so that's why he would have to prescribe the folic acid. A simple Google search when I got home told me that was not true, that it can cause hair loss and that is why doctors prescribe folic acid, AND it can cause liver inflammation, so it's a double whammy. In any case, my doctor lied to me and it caused me to reevaluate his approach, and I can now see how careless it was. He didn't test me for Lyme, my lab results were normal and yet he diagnosed me and started me on treatment without ruling out other possibilities, and because I truly believe that I have Lyme, and I know that I have EBV, I believe his treatment plan (the prednisone, specifically) caused more damage.
I started feeling especially poorly at the end of October. I was under a lot of stress with work (I own and run my own business, so there's that) and I was also planning to visit a friend in Chicago and other friends in the area around my birthday (11/5). I was very excited for the trip, but also recognizing that I really haven't been in great health. I think I've been in a perpetual state of denial, thinking the hydroxychloroquine was working when really, it's just an infection cycling through my body. I experienced a very stressful situation in my personal AND work life, which I think severely weakened my immune system. it was the following week that I was supposed to travel (was planning to drive to IL from NY). I wasn't feel well but I kept pushing ahead, planning to go (because I really wanted to!), but when it came down to the day before I was supposed to leave, I felt horrible. I remember working late and really hard getting ready for the trip (it was a business trip as well as leisure), and when I got home, I was chilled to the bone, my head felt "swimmy" as I call it, my eyes were burning... I didn't feel like myself at all. I remember my mom came over to bring me my birthday present (because I was still planning to go to Chicago) and I told her I wasn't feeling well, that I felt like I was on drugs (but I wasn't).
The next day I felt really terrible, strange "swimmy" feeling in my head, extreme fatigue, and a low-grade fever. All of this along with the aches and pains I always feel -- in my neck, back, shoulders, knees, feet, hands, etc. I had to make the call to cancel my trip. I was so disappointed, but I knew it was the right decision. I couldn't imagine driving 10 hours in my condition. The stress alone from driving would have done substantial damage. It took me a couple of days to feel OK about
not going on a trip I had been planning for about
2 months, but finally I was kind to myself and I let it go. I took the following week, my "birthday week," off from work for a "health & wellness staycation." I had a nice week at home with my sweet dog (the apple of my eye) Olivia, listening to records and getting organized, etc. In retrospect, I wasn't feel very well that week (very low energy, off mentally), but emotionally, I was so satisfied to be home doing things I've been wanting to do for so long (my apartment had become a total dump, because I have no energy to do anything when I get home from work). I had planned to go on hikes that week, but didn't have the energy for that. I took Olivia for walks to the local nature trails each day, which was really nice. Just a week later, I wouldn't have the energy for the same exact walk.
I returned to work the following week. I was tired from the get-go, but trudged through in my usual manner. I worked Monday - Wednesday, shorter hours than I usually work, due to be so tired. I didn't feel like myself at all, and my head hurt (in addition to everything else that always hurts that I've become numb to at this point). Usually I listen to music at work, but I had no desire to do so. My coffee habit had also increased significantly. Normally, I'd have a couple of cups at home and one for the road, but lately I would have to go out in the afternoon to get a cup, even though coffee, and caffeine in general, has no affect on my fatigue. I could drink a whole pot and still feel tired.
It was that Thursday (11/16/17) that I shut down completely. I woke up in the morning as I normally would, more tired than I went to bed, made and drank coffee, took a shower, and could go no further. I dragged myself around the block with my dog, but after that, I was done. I have never experienced fatigue like it before, even through all of this in the past year. It's been severe and heavy and very limiting, but it had not been such that I literally could not do anything. I laid on my couch for the rest of the day. My right hand had also become very painful and swollen (not just the joints, but all through my fingers -- it becomes especially irritated/inflamed when doing dishes, and my fingers turn bright red) that it was painful to use it and I could barely make a fist. My mom came by later that night with something for me to eat because I couldn't make myself dinner. I'm lucky to have a good friend as a neighbor, too, who's retired and loves my dog, so she's happy to take her for walks when I'm unable to.
The next day, Friday 11/17, I felt the same when I woke up. I did the same thing in the morning (up, coffee, shower), and after I got out of the shower and was getting ready, I experienced a severe, acute, sharp chest pain. It was horrible and terrifying. I could tell it was coming from my upper back/spine, but it felt like a knife going straight through my heart. I cried in the bathroom, feeling so scared and desperate - so sick of being so unwell. I called my primary's office (which btw, I had called that MONDAY to to request a test for Lyme, and they said I had to be seen and my appt. wasn't until yesterday). They were going to get me in there with an RN at 3:00 PM (it was around 11:00AM when I called) and I said I'd try to make it that long. I was greatly distressed, and the receptionist asked me what was going on and in tears, I told her. They called me back and told me to go to the ER. So I did. I have never been so low energy. I could barely hold my body up at the window to check in. I was out of breath from the trip to my mom's car to the building, and then from the window to the waiting room. I could smell cigarettes on a person from across the room (10ft. or more).
I had the same doctor I had at my last ER visit, which I thought was a bit of good luck. At least it wasn't starting completely from scratch there. They did an EKG (the second Ive had recently, as I experience chest pain frequently, however this was the worst) and drew blood. The doc misunderstood that I think I've had Lyme for over a year, and they ran an acute LD test (sorry, I don't know all of the names), a Lyme titer? And I believe in my case, something like a Western blot would be more appropriate. He did, however, also order an Epstein-Barr Virus test which came back highly positive (I'll post the numbers below). I had mono when I was a kid like most people. Considering what my immune system has been through, it's not really surprising that mine is reactivated. I find it very interesting, though, as I've read so much about
EBV being related to Lyme. In my mind, this is another clue.
My primary care physician, however, made no mention of my EBV at my visit yesterday. It was a really awful visit and I left feeling so hopeless. She explained that she knows very little about
Lyme disease, which I understand -- apparently not many doctors do know much about
it -- but she essentially just shoved me off on another doctor and in the meantime, the only solution she had to offer was antidepressants to "help with the stress so that I can function." I didn't respond how I would have liked to in that moment. I'm just so tired of defending myself and my symptoms as something very real that needs to be addressed. Her suggestion for antidepressants made me realize she doesn't understand the very real nature of my symptoms and that she thinks it's psychosomatic. I tried to explain how much trouble I've been having and yes, I was emotional, but who wouldn't be? I've been sick for over a year and my quality of life has significantly diminished.
The next stop is an infectious disease specialist. I'm waiting for approval for my insurance, which could take up to 10 days. In the meantime, I'm just barely functioning. Anytime I get a little boost of energy, I do something, and then it's gone. I wake up tired. My neck has been severely stiff, including my spine between my shoulder blades all the way up to the base of my head, and I've had horrible headaches like ice picks through my right eye. Deep shoulder pain. Muscle weakness. The list goes on (I will post my current symptoms below, too). I have an MRI of my brain and an ultrasound of my heart scheduled for this Monday (12/4). I have severe cognitive issues (short term memory loss, problems with concentration, word/name search, swapping words and numbers, etc).
It feels good to write all of this out. I suspect this will be familar to many of you. If anyone has words of advice for me in this dark time of uncertainty, desperation, and isolation (feeling really alone, as no one seems to understand what I'm dealing with, especially doctors), I would love to hear from you. I feel so certain that I have Lyme disease, but no evidence beyond my symptoms (which can be seen in some cases, i.e. swelling of joints, hair loss, mottled skin and red streaks on thighs, and just generally looking very unhealthy right now -- puffy and/or sunken eyes, terrible color, etc), and I've learned that I can't rely on conventional medicine to be on my side.
I know about
IGeneX labs, and even ordered and received a test kit, but I can't afford their testing. I think that if the infectious disease specialist doesn't find anything conclusive, my mom and I will probably do our best to pool together for a test.
While I don't have a diagnosis for Lyme disease (yet), I do know that I have EBV. I've found very little information on reactivated EBV online. I'm wondering if anyone can help me understand it better. What are the full range of symptoms and what can I do to alleviate them and start to heal from the virus? I know severe-debilitating fatigue is one, and that it can cause brain fog. I've also read that it can cause joint pain and other aches/pains, but could it cause the kind of pain and other symptoms I'm experiencing that I have attributed to LD?
EBV numbers:
EBV Ab VCA, IgM: <36
EBV EA Ab, IgG: 11.8
EBV Ab VCA, IgG: 142
EBV NA Ab, IgG: 276
CURRENT SYMPTOMS (short list!):
Unexplained fevers, sweats, chills, or flushing
Low body temperature (or low grade fever)
Malar flushing, red ear lobes
Fatigue (extreme, debilitating), tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Pelvic pain
Unexplained menstrual irregularity
Symptoms worsened with PMS
Frequent urination
Loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations Joint pain and swelling (migratory)
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Burning/dry eyes
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Hypersentivity to smells
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Difficulty falling asleep
Exaggerated symptoms or worse hangover from alcohol
Symptoms increase/worsen after a shower
Severe Raynaud’s syndrome – worsened in the past 2 years
Mottled/blotchy skin (hands, knees/legs)
Many thanks to any and all who have taken the time to read my story. I look forward to hearing from some of you.
Post Edited (fightingtired15) : 11/29/2017 11:47:48 AM (GMT-7)