Lyme Disease :: Persistent Middle Ear Infection With Muscle Twitching And Fatigue


Dec 2, 2014

About 6 weeks ago I began to experience some ear problems. It started with muffled hearing, tinnitus, and mild pain. I went to primary care provider and she prescribed amoxicillin three times a day for the middle ear infection. A couple of days later my symptoms got a lot worse. I lost most of the hearing in my right ear and I had severe jolting pain that radiated to my whole head and eyes. I went to the ER and was given a shot of penicillin and was also diagnosed with strep throat. I was referred to ENT because my eardrum had actually burst. The ENT doc prescribed ear drops and a higher dose of amoxicillin with clavu k. Another week passed and the symptoms continued to get worse. I followed up with ENT last week and he said my right ear looked really bad inside and I am probably going to need surgery to fix it. He also said to stop taking my antibiotics and ear drops.

Okay, this is why I think I may have Lyme. Throughout all of this I was experiencing flu and other symptoms that I didn't pay much attention to because I was focused on the ear infection. In the beginning I felt unusual muscle twitching in my limbs with achy pain. I just dismissed it as normal body functions. Fast forward to this week, the muscle twitching is now more severe and present all over my body (almost every voluntary muscle). There is some accompanying pain/soreness from the constant twitching. I am also having heart palpitations, anxiety, depression (a first for me), joint pain, dizziness, painful headache, and brain fog/"out of it" feeling. I am also unusually sensitive to cold and some of my muscles feel "electric." I went to the ER yesterday and they did some bloodwork, an EKG, and a chest x-ray but everything was normal. The EKG showed a left axis deviation in my heart but the doc said it was nothing because I am a little stocky.

I don't know what to do. I am getting worse everyday, especially after stopping the antibiotics. My doctors appear to think that my symptoms are psychosomatic even though my anxiety has been under control for weeks. The only thing they're sure I have is an ear infection, but even that isn't responding to antibiotics.

I have pets and they play in a backyard that is filled with squirrels, rats, opossums, and birds. I sleep with one of my dogs and I have found a few ticks in my bed before. I didn't think they bit humans but about 2 months ago I did develop a weird rash on my upper buttox that became a huge cyst (I sleep belly-down). It lasted a few weeks but it completely disappeared a couple of weeks ago. I just thought it was a big zit and didn't think much of it. Maybe this could have been a bite?

Sorry, about the long read. I am a recently discharged disabled veteran and I receive healthcare through the VA. Appointments are always weeks away due to huge backlogs, which makes it even more frustrating. The appointments are also always rushed and my doctors are quick to make the "anxiety" diagnosis if they don't find anything obvious.

I am not looking for a diagnosis. I am mainly seeking advice on what I should do and if my symptoms may sound like Lyme. I would also like to ask how I can approach my doctor with the possibility of Lyme Disease without being dismissed right away. I am really starting to get scared because I have been getting progressively worse over a period of almost 2 months.

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Neurology :: Muscle Fatigue And Perceived Weakness And Twitching

I have been having a slew of health problems recently but am still awaiting further testing. In the meantime, I am very stressed and having a hard time managing. I keep getting worried that my symptoms could be onset of ALS despite knowing how illogical it sounds. I am a 25 year old male.

First, I was diagnosed by my doctor with a sinus infection, although it was probably very slight. She prescribed me Augmentin and I took it for 5 days and immediately started feeling bad on it. After I quit taking it, I noticed some tingling in my hands and feet at work on Thursday the 11th. The next evening, Friday, my legs started to feel unsteady and heavy when I walked and my hands and arms remained tingly and had perceived weakness. On Monday morning, the 15th, I went to the ER and they believed I had Lyme Disease and prescribed me doxycycline. I took this for 7 days, but did not feel any better. I remained having perceived weakness primarily in my legs accompanied by muscle tightness, muscle soreness, and very slight, sporadic twitching all over. On the 19th, I saw a neurologist who dismissed my symptoms as not serious as my reflexes were ok (knees were slightly weak, but I was very tense during the test) and I was able to walk normal, it just felt strenuous. My lyme test came back negative and a second western blot also came back negative.

Currently, I continue to have all of my symptoms, including perceived weakness, muscle fatigue, soreness, tightness, and twitching.  Symptoms are present all over my body, but concentrated in my legs. When I lay down at night, my whole body will feel as if I had a sunburn and I am having difficulty sleeping because of my worrying. If I go out and walk, my legs gets very sore and tired much quicker than they ever did before. Additionally, I have been having a very dry mouth and tight feeling throat. My PCP believes it to be either post-viral syndrome, mild MBS, or the least likely, MS. Others have suggested b12 or vitamin d deficiency. I have an MRI scheduled next week and an appointment with a different neurologist.

Other info:

-Was prescribed zoloft and am less than one week in to taking it. I believe it may be increasing the shakiness of my hands and my stress, as it takes some time to adjust to it.

-Was prescribed ambien to sleep. I'll sleep for about four hours straight, but then have a hard time continuing to sleep once I wake up. I believe I might be twitching or jerking in my sleep which wakes me.

-I tried to go to the gym on the 24th and run and lift weights. The next day, it felt like it really set me back, as I was much more sore and my legs seemed more unsteady.

-Began taking b12, b complex, magnesium, D vitamins.

-Had multiple blood tests. The only abnormal result was a positive ANA for speckled at 1:80. I read this can be a pretty common result.

-Less than 2 years ago, I had shingles.

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My lab work came back normal (hemogram, BMP fasting, ALT, AST, TSH) but my body is still twitching and it feels sore at times. Yesterday, I got home and felt weakness on the top back of my right calf. I very concern and not able to concentrate on my daily activities (work and personal related activities).

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Lyme Disease Or Sjogren's?

I have had a number of symptoms starting 6 months ago and have progressively got worse ever since! I've had MRI - normal, thyroid test - normal, neurologist tools lots of blood test looking for inflammation and tested for Lupus - all normal! He's now sending me for a lip biopsy! Here are my symptoms -

- Persistent swollen glands in throat (lots) - all reactive according to ENT

- thyroid nodules

- neuropathy

- Eustachian tube dysfunction (& muffled hearing)

- visual snow with all the trimmings (photosensitivity, increasing floaters etc)

- itching skin

- dull toothache

- tinnitus

- thinning skin (veins very noticeable and bulge)

- tickly throat and dry cough

- thick phlegm at back of nose

- occasional dry eyes

- ear ache

- muscle aches and pains

- joint pain

- on / off mild fevers

- tiny pin prick like spots on torso, arms, thighs

- blotchy skin

- pigmentation in skin (dark around mouth and nose and blotches in other parts of body)

- skin dents very easily / shiny palms / stretchy skin

- constant clearing of throat

- spaced out feeling

-dizziness and vertigo

- headaches

- stiff and aching neck and back

- random skin rashes that come and go but chest is red and blanches

- cold hands and feet

- shivers (get goosebumps all over body for no reason)

- Fingertips sometimes turn blue

- brain fog

- fatigue

- wart like tiny blister looking spots on palms and palms look extra wrinkled and shiny

- joint cracking especially neck

- night sweats (at the beginning, occasional now)

- constant buzzing feeling all over body

- can see heartbeat through clothes / palpitations

These a few more things but I won't bore you all with more!!

Anyone else with lyme had these symptoms? The most concerning is the vision and hearing which really concerns me! Can I have Sjogrens when all my bloods are fine?



Many thanks in advance!

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I had been on a residential for three days before, in some woods, but had showered every morning and I had a long bath on Friday night and noticed nothing.

We suspect it bit me on Saturday morning but could potentially be any time from Wednesday to Saturday.

What shall I do in terms of going to the doctors / monitoring symptoms?

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Lyme Disease :: Western Blot At .97 ISR

I have had some troubling symptoms the past few weeks/months. I am just going to post a timeline here. I am going for my first visit to a rheumatologist on Wednesday so I need this for them anyway.

Fall 2013:

Began having ice pick headaches all day, everyday for a week. Thought it was hormonal. Took Evening Primrose Oil for it and it seemed to help. Ice pick headaches would return once a month in Oct, Nov, and Dec. During the fall I noticed lack of energy and fatigue. Was having trouble with herniated disks in L4-L5-S1. Began having spinal decompression treatment at the chiropractor. Discontinued decompression treatment in Jan 2014 as back and leg pain subsided.

Late Dec 2013:

Developed a head cold that included pink eye. I took a lot of antihistamines for this. Advil Sinus and Benadryl. Took antibiotic drops my mom had when she had the same cold/pink eye. Pink eye resolved but turned into dry eye syndrome. Eyes would become very dry and painful to blink starting every night around 8:30 p.m. Waking up at night with eyelids so dry it was difficult to open eyes. No tears, however sometimes I had 'flooding tears' (emergency tears) from such severe dryness.

Jan 2014:

Went to my eye dr about dry eyes. He suggested I may have an underlying disorder such as lupus or thyroid problems. He recommended Restasis but suggested trying OTC drops at first. Began using preservative free OTC drops which helped relieve dryness only momentarily.

March 2014:
Went for annual GYN visit and he prescribed restasis for dry eyes. He was not concerned about an "underlying disorder" and did not test me for anything. Began taking Restasis drops twice a day and dry eyes have improved but not perfect. Take drops once per day now and OTC drops as needed.

Last 2 weeks of March 2014:

Developed a head cold with sinus congestion, big sneezing, mild cough and post nasal drip. Was afraid it was turning into another sinus infection but it ended up clearing on its own. The first symptom I noticed besides the runny nose was a mild sore throat. I had an ulcer on my tonsil that may or may not have been infection. I thought it was a tonsil stone and tried to poke it out with my finger (as I usually do) but it just irritated it so I left it alone. I could not take antihistamines for my congestion due to dry eyes. Throat was still irritated but I used salt-water rinses and honey. By the end of March the cold had cleared up and I was feeling some better. During these 2 weeks I experienced occasional bouts of abdominal cramping and watery, explosive diarrhea. Blamed it on something I ate as I had no fever and no one else was sick.

On Friday March 28 a stray dog showed up at our house. We have a border collie already but this one was a golden lab puppy. (can you be allergic to one breed of dog and not another?) A few days later my crazy symptoms started.

On Tuesday April 1:

I walked around outside around 5 p.m. for 15 minutes or so while my kids played in the yard. I am an active person and stay busy with cleaning for my grandmother, yard work (had just planted bulbs and trimmed bushes a few weeks ago) and exercise such as P90X when I'm feeling up to it. So I am used to more strenuous activity and spending time in the sun. That evening when I came inside I noticed I had a streaky rash on my sun exposed arms. I thought maybe the dog had scratched me when I was playing with it.

Wednesday April 2:

I rode the riding mower from 9 am to 10:30 a.m. Most time I have spent out in the sun all year, however I regret I did not wear sunscreen. I wasn't worried though because I have been out at that time of day before without sunscreen and have only gotten a few freckles or very mildly pink. By that afternoon the streaky rash on my arms were more intense. There were red vertical streaks on my shins that were exposed to the sun. My chest became red with splotches and small pink bumps (similar to the allergy reaction I have had to erythromycin). The rashes on my arms and chest slightly itched (like a tickle itch) but it was tender to scratch it so I did my best not to. I took Benadryl that night in hopes it would help make the rash go away. The rash stayed.

Friday April 4:

I went back outside that evening between 4 and 5 pm for about 15 minutes and threw frisbee with the dogs. Picking up the frisbee, I guess I squated more than I normally do. But I felt fine that night.

Sat April 5:

Sometime during the day - not sure when - I noticed my thighs were sore when I would go up and down the steps in my 2-story house. I blamed it on the 15 minutes of frisbee but I thought that was really weird that I would hurt so bad with so little workout! Frisbee? Really? I usually have very strong and defined thigh muscles.

Monday April 7:

At this point my thigh pain has become more severe. It has become so difficult to walk up and down steps that I was brought to tears. The pain seemed to spread down my legs into my calves, but the thigh pain was unbearable. I did not experience any pain at all when at rest. Only when using my muscles to walk or go up and down steps. Moving from a sitting and standing position was also unbearable. It was as if I had worked out extremely hard and had maxed out or injured my muscles. I was very confused how throwing a little frisbee could create so much pain, when I have done P90X workouts without any problem before.

Tuesday April 8:

Went to visit Dr. Ashley to discuss dry eyes and muscle pain and rash. He performed blood tests and all was normal. Except a few slightly off results:
Bun/creatinine ratio 20.9
MCHC 31.8
Sed Rate 25
other CMP and CBC results normal
TSH, Free T4, RA factor, ANA panel and sjogrens all normal.

Friday April 11:

Went to chiropractor for 1 hour massage and adjustment. Was nice but didn't help.

Saturday April 12:

By this time the muscle pain has spread from my thighs, well into my calves, my lower back is sore and my abs are sore when using those muscles as well. I woke up Friday night with fever between 99-100 and chills. My muscle aches seemed more intense. By this time the rash on my chest has become more red and spotty with bright red/purplish spots. It does not itch at this point but it is unsightly. The rash has spread to my face and neck and is red splotchy with red/pink bumps on my face and neck. I am concerned about the rash and the possibility of something other than auto-immune. I visit the express clinic and they test me for strep (negative) and put me on antibiotics (a cephalexin I believe) to treat me for strep anyway. Blood was drawn for RA and sed rate and results were considered "normal" although I don't know what they are exactly. I was given a cortisone shot and prescribed 800mg ibuprofen for pain. He said my iron and WBC were low.

I continued taking the antibiotic and ibuprofen and felt better on Sunday only because the fever broke. However rash and muscle pain/weakness persist. By Sunday night I felt I could not walk down the stairs due to pain and weakness so I was having to slide down the stairs on my hiney.

Monday April 14.

I awake again with low grade fever and feeling worse. Muscle pain and weakness have increased and spread to my back thighs and hiney. My left arm begins to feel somewhat painful when using it similar to the leg pain.
I visit my GP again and he prescribes Prednisone pack starting at 60 mg. He says to continue antibiotic. He tested urine and stool samples for infection and parasites...normal. He tested blood for Lyme disease, trichinella antibody, rocky mt. spotted fever, and mono.

Wednesday April 16 - The rash and muscle pain continues. It is at this time that I realize that the antibiotic is a close cousin to penicillin. I phone the pharmacists who suggests I discontinue the antibiotic because my rash became worse after taking it. The dr. at the express clinic had prescribed it to me before and assumed I could safely take although i'm allergic to penicllin. But my mom reminded me that he had prescribed that before when I had a sinus infection but we called the dr office and they suggested not to take it and prescribed something else instead. So I was not sure if this rash is getting worse due to the new antibiotic.

Thursday April 17:

Went to chiropractor for decompression therapy. This helped relieve some tension in lower back, but back remained sore when using muscles.

Between Monday April 14 and today Monday 4/21 my thigh pain has decreased but I still feel leg pain and weakness. My calves are still sore to walk (feels like I am about to have a charlie horse but I don't). My lower back remains sore and tense. My left arm is weak and sore, and slightly in my right arm. Doing things like drying my hair and holding things is difficult and painful. My hands feel unstable sometimes like I don't have full control of them. Like a weak feeling. I get out of breath at the simplest tasks. Like coming in the house from the car is exhausting. I am not able to go get groceries or do my usual activities (cooking and cleaning) without frequent breaks and feelings of exhaustion. My rash is severe and intense at this point. Over the weekend (4/18-20) my rash began to itch but it is too tender to really scratch it. I haved tried oral benadryl, hydrocortisone and found some leftover betamethasone I use for excema. The betameth seemed to help relieve the redness, pain and itchiness until after I had my shower. I did not put more on today as I had my appt and wanted him to see how severe my rash had become. It has spread more on my face and is even more red now. It is spreading to my back and back of neck. The skin on my v-neck is very irritated and the skin looks damaged although I have tried not to scratch. I lightly rub the skin instead. I have also used vaseline on the rash to keep it hydrated so it wouldn't dry out.

Monday 4/21:

Received results from tick and parasite tests.All were normal except Lyme Western blot was .97 (equivocal) meaning it was not negative nor positive. He wants to retest in a few weeks. In the meantime he Rx doxycycline in case this is Lyme. He is testing for dermatomyositis and my creatinine levels. I will see a rheumatologist on Wed 4/23. He also prescribed a cream to use for the rash.

Since this all began in April I have noticed that I have something going on with my mouth, but I'm not sure exactly when it began. Maybe around the time I was having fever. My tongue feels tender on the tip and I have lost some of my sense of taste. My sense of smell is not as it used to be when I got the head-cold in March. But the sense of taste is troubling me. I have a constant dry, bitter, salty taste in my mouth. It makes me want to drink more water to 'flush' the taste out, but water tastes horrible and bitter to drink. I did burn my tongue on Wed 4/16 when tasting homemade spaghetti sauce that was too hot. But I believe the mouth problem had started before then. I thought it was due to the medicines I was prescribed at the express clinic.

Other things of note - I feel strange like I'm in a dream. Not sure if it's the prednisone affecting me or what. It's a "is this real life?" feeling that is hard to explain.

I have also lost my appetite. Not sure if it's because my taste and smell are not up to par, but I have a hard time eating. My jaw muscles get tired of chewing. Although I have had minor TMJ troubles in the past I thought the TMJ was bothering me again due to maybe grinding my teeth from being in pain? The jaw muscle hurting when chewing seemed to start as soon as my leg pain started. Depending on what I eat, they may or may not hurt. Chewing meat makes them sore, but eating a banana does not, for example.

I have also gained 10 pounds since Dec'13. I contributed it to being sick and resting my back more due to the decompression therapy, but it may be related to everything else I have going on. I normally weigh right at 170 and have weighed that for around 8 years. I am 5'-8" and 35 years old.

So that's my story...If I think of something else, I will include it.

Any thoughts? Is this typical Lyme disease? I am more concerned about dermatomyositis. We live in a wooded area and usually find ticks on us during tick season. I can not remember if I did or did not have any small deer ticks on my last year, but I know I have found them before. Over 15 years ago I stepped into a bed of the bitty deer ticks and they were covered/crawling all over my shoes. I showered and tried to remove as many as possible. We have a dog that has tested positive for tick disease although she does not show signs of any problems with it. She takes flea/tick/worm medicine regularly and goes to all her check ups.

Throughout this April illness I had also experienced lymph node pain around the time I had low grade fever. I have always experienced shooting random pains in my body when I get sick. That is always a sign to me that I'm getting sick or am sick with something. Once the fevers stopped, the shooting random pains stopped. They are like shooting pains beneath the skin (not muscle or bone). Sometimes in my side, my arm, my leg or my neck under ears.

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Lyme Disease :: Western Blot Results?

I received my WB results from IGenex and have an apt with an LLD on the 21 of Oct But wanted some input. Here are the results:-

Lyme IgM WB
LINES
18 -
23-25-
28-
30-
**31-
**34-
**39+
**41+
45-
58-
66-
**83-93-

Lyme IgG WB
18-
**23-25-
28-30 -
**31 ind
**34-
**39 IND
**41+++
45-
58-
66-
**83-93 -

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