Lyme or?

[kittatt]

Thank you to anyone who reads this. It's kind of complicated, but I've been really stressed over this for so long and wanted to know others' opinions.

Prior to all of this, I was looking for a job and stressing over the fact I was (still am) unemployed. Though that made me feel stressed, I was quite optimistic and happy.

About two months ago I was listening to music with earbuds and noticed shortly after that I had slight ringing in my ears. I panicked after reading about tinnitus and how there is no cure. Went to a wedding later on and realized everything sounded way too loud. My ears hurt when people talked too loud and the music seemed terrible! I stayed out of the room a lot that night, feeling isolated and scared.
Thinking I damaged my ears even more from the wedding, I got even more stressed, anxious, and depressed. My hearing sensitivity remained for over a week. Things like pots and pans hitting eachother and people talking at normal levels made my ears feel weird.
I found out magnesium may help so I started taking that for a week--more than recommended dosage. A week later I noticed my wrists were clicking a lot. Randomly, but a lot more than I noticed before. A couple days later I noticed my knees were sore.
I had been holding my iphone a lot more than usual--researching tinnitus, so when I think about my wrists clicking and occasionally hurting, I wonder if it was caused by repetitive use, but still worry.

There are a lot of possible reasons for my knees. I've gone for long walks for years and around this time I had gotten new shoes that didn't fit right. Wore them a couple days and stopped because they hurt my feet. My old shoes were really worn out, but seemed more comfortable than the new ones, so I kept wearing them for about another week. My knees continued to ache, so I went to buy new shoes. While I was stressing about my ears, I didn't walk quite as much and sat around a lot. This could have contributed as well--(when I started walking again, I started out with too much too quickly maybe?)

I then noticed my knees would pop when I bent them backwards--so I freaked out, thinking maybe the magnesium I took weakened my muscles or something, causing all these symptoms. I felt like a hypochondriac, but I had already been really stressed over the ear ringing for weeks prior to this.
When I went to the doctor, he did some tests for magnesium, calcium, thyroid, and phosphorus--all normal, and diagnosed me with patellofemoral pain syndrome (pain in the knees). I started reading about that syndrome online a lot, finding out it could be chronic, which then fed my stress and anxiety. I started going to physical therapy and my knees haven't hurt like before. I am wondering if it really was just my shoes. My PT also said I had hypermobile joints--I can bend my knees back farther than normal.

What worries me still, however, is that all of this started around the same time and for many of these weeks I have been getting random muscle twitches throughout my body (legs, arms, back) and have been getting dull back aches as well. A couple days ago I even noticed my arms and hands were tingling. These could be the result of using the computer a lot, but I always use the computer and never had all of this happen before.

I was tested for lyme disease last week and it was negative, so it made me feel better. Last year I was bitten by two ticks--which I am pretty sure I pulled off right away. I'm still concerned about LD because I am always outside and like to hike on nature trails. This year I spotted two ticks sitting on blades of grass, but haven't noticed anymore on my body.

I would just like to know what anyone here thinks about my story. Could I just be overreacting? Could all of my recent symptoms be caused by constant stress and the contributing factors like bad shoes, posture, and overuse (of my phone and computer)?

I have had more energy lately--before I was so stressed I could hardly think about anything except the possibility I permanently damaged my knees and the ear ringing. I cried a lot, felt really exhausted and depressed.
I've always been an anxious person, stressing about a lot of little things. Depression isn't knew. I was fine before the past couple of months, however.

My knees don't hurt like they did. Went for a longer walk yesterday, but my wrists continue to act up--tingling and clicking with some pain and my muscles continue to twitch randomly throughout the day.
My ears still ring, but I'm getting used to it--it isn't loud, just scary and stressful at first.
I had no flu-like symptoms except headaches--possibly from stress...

Am I just being oversensitive? Is this stress or could this be something like lyme disease? I know LD can cause a lot of these things, but so can stress! I keep reading LD tests aren't always reliable and that starts to raise my stress level a lot. I really don't have terrible joint aches like a lot of LD symptom lists describe.

I know stress causes bad physical symptoms sometimes--muscle twitching included.

Thank you again for reading. Sorry if it is a little confusing! Just needed to talk to others about it.

[cave76]

I had discarded the Ehlers-Danlos Syndrome (EDS) since you said you didn't think it was a problem.

After your post today I revisited some sites and found that EDS is commonly associated with pain. A friend has EDS but almost no pain, so I just figured o.k.---- pain doesn't = EDS. I was wrong, oh so wrong! Just goes to show that there's no 'always' in our health.

Since EDS affects the collagen in the body and since Lyme also can lodge in the collagen/connective tissue of our bodies-----

I don't want to jump to any conclusions about your problems, Lyme or other, but if it were me I'd certainly get this looked into more.

"Chronic pain from EDS may be constant yet changeable throughout the day."
A chart at this pdf
http://www.inthefaceofpain.com/content/uploads/2011/12/factsheet_EDS.pdf

..... shows that knees account for 89% of the location of pain from EDS.

Since you belong to Kaiser you can't mention Lyme to your doctor but I'm pretty sure that EDS is a safe subject with them.

I hope you'll at least find out if EDS is a problem in your case. One thing to be crossed off your 'concern' list maybe.

[mojogal]

Hi, I am sorry for your problems but I can relate to your feeling of loneliness and feeling strange.

I had the same thing with my vision. It comes and goes with treatment. I am a different case then you, I was bitten over 20 years ago but didn't realize it until 18 months ago.

I have nerve damage which could permanently affect my vision so I see a specialist. I have friends whose vision was fine with treatment.

As for joints etc, in my 40's I had to have my right hip replaced. I now know that it was because the bugs love eating cartilage, again, that was because I had it for so long before starting treatment that it got to that point.

My knees and other joints are painful but that can't be seen in an X-ray. That can be a side effect of Lyme.

Its probably good to tell your PCP that you see a Lyme specialist because of medication interactions. He should know what you are taking and vice versa.

I wound up in the hospital last year and had to tell them I have Lyme. I was looked at funny by some but they had to live with it. Its better to be safe then sorry.

Feel better

[kittatt]

Hello again -- Another update

I went to my appointment. I forgot to ask for a copy of my tests, but my doctor said I had three positives and two INDs. He explained how I would be CDC positive if those two INDs were also positive.

I was prescribed Cefuroxime and Azithromycin for now and am going to be tested for co-infections in the next few weeks.

Also forgot to tell him about almost passing out! (ah!) There was so much do talk about and it was kind of rushed.
I will make sure to mention it to him soon when I get tested for the other things.


The morning before I took any antibiotics I noticed my vision was a little weird, like there is a slight "tv static" appearance to everything. I'm really hoping this will go away. Yesterday I got my eyes checked and have a little bit of nearsightedness, but it doesn't explain the static.

I've always had pretty good eyesight until recently...

Has anyone here experienced something like this with Lyme? Did it go away with treatment?

I've also noticed my knees seem to have gotten even worse today--still very little (or no) pain. It feels and sounds like there are rocks in there!
My thigh joints--or something--have been popping a lot more in the past couple of days too, like they're coming out of the socket. It's really starting to scare me.
All I have done this week is go for walks. Nothing strenuous.

I tried doing some strengthening exercises prescribed to me by my physical therapist because my original diagnoses was Chondromalacia patella (patello-femoral syndrome) or softening of kneecap cartilage, to see if it might help my knees.

This is when I noticed they, and my thigh/groin joints had gotten worse. Almost every time I straighten my right leg, it feels like something is catching.
I feel and hear a loud pop near my upper thighs too... They didn't do that a week ago.
It has to be Lyme. I don't understand how it could get worse so quickly if it wasn't.

I want to go to my PC doctor to get MRIs, but she already showed me my knee X-rays and told me I'm fine. I can't be fine if they're getting worse!

I feel like I need to know how much damage there is.

I am afraid to mention going to a separate doctor for Lyme. Is there a good way to explain this to my PC doctor?

Thank you so much for reading and for you support! This disease makes me feel lonely and strange all the time, but I am glad there are people here to talk to.

[JackieCalifornia]

Good!  Be careful driving -- and do relate these episodes to the doc so he's fully aware -- we'll be here when you get back.  Best to you -- J.

[kittatt]

Yes I am glad I finally know what this is! I will ask for copies of my test. I don't really understand how the tests work or how they are read but I am curious how my doctor figured out that I have lyme antibodies.

I'll talk to my doctor about being dizzy and mention orthostatic hypotension.

It was very weird. When it happened the second time all I could think about was finding the chair in the other room. Somehow I found it even though I couldn't see! It was definitely an "unavoidable need to sit or lie down" feeling.

It was very strange. I will make sure to be careful if it happens again.
I know it has to be lyme related in some way because it's never happened before; especially two days in a row.

I am seeing an LLMD in my area. When I talked to him on the phone he said I should be tested for the coinfections, so that's good. He also mentioned the antibiotics.

I will let you know how it goes. My appointment is tomorrow.

Thank you again!

[Ricobord]

I am so glad that your doctor recognizes Lyme antibodies, even when the overall CDC interpretation isn't "positive."

Lyme loves connective tissue, as it's a low oxygen environment and often protected from the immune system. It's probably why your joints feel loose. It's a blessing that you don't feel pain at this point, as some have described horrible joint pain that is crippling.

I have had a variety of different kinds of headaches in my Lyme and coinfection experience. Sometimes dull and low grade, other times sharp and specific.  Headaches are really common with Lyme.

Be sure to be careful when you feel dizzy or light headed.  For me, it would come on without warning.  Passing out and falling can result in a concussion, so you want to avoid that.  In Dr. Burrascano's Diagnostic Hints and Treatment Guidelines, he has a symptom list that includes "unavoidable need to sit or lie down."  You'll know it when you feel it.  I have a lot of experience with that one.  When you feel it coming, sit down, or lie down immediately.  It usually passes for me within a few minutes, but when I was sicker, it could last for a couple hours.

I am not sure if you're seeing a LLMD or not, but make sure that you do.  You'll invariably need more than a couple weeks of antibiotics given your symptoms.  Let us know how it goes!