06-16-2008, 05:05 PM
Join Date: Jan 2008
Location: Memphis, TN
Undxed Lyme? Help!
When symptoms started, sorry so long. Any advice would be greatly appreciated.
“Slapped Face” episodes begin. Starts with eye pain, left or right. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This happens every 3-6 months. I have not had a bad episode since New Years Day 06’.
I took a fall in the shower. I hit the right side of my head on the marble wall & the lower part of my spine on the side of the tub. Within a few days I start having migraines & a bobble head type feeling. Saw the chiropractor & found out that I had a few disks out of place. I started treatment & got better within a few months.
Left hip pain started. Like I step a funny way & it pops. When it pops, I have a shooting pain from my groin to my knee that stops me in my tracks. This only lasts 30 seconds or so. Then the joint hurts for up to 2 weeks. I can not lay flat on my back with both legs laying down. I have to squeeze my butt cheeks together so my hip pops & allows my left leg to lay flat. Ortho said that’s it’s arthritis & thinks I should move it more. (At the time I was running a home day care with 8+ children most days, not to mention 3 that don’t leave at the end of the day.)
At this time I also came down with a weird infection thing. My lymph nodes swelled up so big that it hurt to move me neck. I felt like I had the flu with out the sinus stuff. I run a low grade fever but not always. No doc has ever figured out what this is. My MVR was also dxed by an echo.
I began having issues with my eyes. I call it “googly eyes” because I feel like my eyes are doing their own thing. No rhyme or reason for when this happens. I could be fully awake or totally exhausted. Happens for days at a time then stops for days at a time. When I am in the shower, I close my eyes as tight as possible & water & soap still get in. Like my eyes are not sealing. Sometimes they feel like they are letting air out.
3 middle toes on left foot have been going to sleep for a while now. Left leg feels heavy when I am working out. Still having “slapped face.” Figuring all this neuro stuff may be vitamin def related, I bring it up to my GI doc. He refers me to a neuro to be evaluated for neuropathy & MS.
The neuro takes my history. I tell her about the chronic headaches I have had for years, “slapped face” & “googly eyes.“ She uses a tuning fork looking thing on my feet. She also tests my reflexes. Tells me that I need an EMG & MRI to test for neuropathy & MS.
EMG & MRI results are in. Normal for both. Neuro wants me to take 2 different meds for the headaches. I pass on both.
I see a neurological psychiatrist because I think I am going crazy. If I am “normal” then I must be imagining these weird symptoms. She prescribes Cymbalta. Best thing ever. Cymbalta took away my chronic everyday headaches.
I began having right shoulder pain. It would start with a burn. Not hot or red on the outside. It just felt very hot on the inside. It quickly moved to my elbow & wrist. My arm would be nearly useless. Very heavy, weak. I feel so fatigued when this is going on. It takes so much effort to use my arm. My left wrist will also hurt sometimes. My arm bones hurt, not just my joints. This will happen for days at a time then just go away. I also feel like my whole body is swollen when I feel this way.
I also start to have a weird shocking feeling from my left thumb to the bottom of my left jaw. 1st I would feel the shock in my thumb, then my jaw. The feeling would not travel from thumb to jaw, just throb between the 2.
My hip started killing me. I could not get any relief. I made an app. with a new Ortho because my insurance had changed. After x-rays he sends me for an MRI. He thinks that what he sees my be a possible birth defect in my lower spine. And that possibly due to the birth defect in my spine, my femoral head is flat instead of round. That due to the flattening, I have chronic bursitis. He prescribes 200mg Celebrex twice a day & a back brace. The back brace causes my knees to hurt terribly. He also tells me that I probably have Morton’s Neuroma(s) in my left foot & this is why my 3 middle toes go numb. He prescribes inserts for my shoes.
My left leg began to hurt. It started with electric like shocks on the side of my calve. Sometimes I have the shocks in my left thigh. I thought nothing of is until my right leg started doing the same thing. I am so uncomfortable. I am having trouble sleeping at night. I started taking Lortabs & Percocets with no pain relief at all.
Saw my 1st rheumatologist. Told her about everything. She asks me when I saw the neuro last & if anyone in my family has Lupus. She sends me for a ton of blood work & checks me for tender points. Tells me to wear better shoes & exercise more. I had to stop working 6 days a week at my mom’s restaurant because my legs were hurting me so bad. I went to 3 days. I feel like she assumed that since I am a little over weight that I am lazy & inactive.
I saw the rheumy to get results. She tells me that I am pre-Lupus & leaves it at that. She tells me that the pain in my shoulders is probably from my endo (yes, she’s crazy & I am never going back). She then tells me that I have mild arthritis & my legs would stop hurting if I were more active.
I get a PCP. I need help with the pain. I am taking 400mg Celebrex & up to 8 Advil a day. She vows to get to the bottom of whatever this is that is causing me so much pain. She orders my records from the Ortho, Neuro, & Rheumy. PCP put me on Requip for the leg pain. It did not help at all.
The 11th: My neck hurts, I am lethargic, my MVR is bothering me, my left eye is not googly but it is blurry, feels like someone is squeezing my left ribs.
14th: My heart would not stop bothering me. Around 2pm I started feeling really bad. My heart would not stop flip-flopping. I called the dr. & made an app. When I got to the school to pick up the girls, I could not breath good. No matter how hard I tried, I could not get a deep breath. My whole body got tingly. A friend had to drive me to my app. The dr. saw me right away. My blood pressure was super low. They gave me nitro & told me to go to the ER. I got better then had another heart episode. I was monitored for 7 hours. During this time I was given a CT & x-ray. The ER doc said that it looked neurological to him but I should still see a cardiologist.
18th: I see my PCP because I still feel horrible. No energy, lymph nodes swollen, feel like I have the flu. My left jaw line has electric shocks in it constantly. I am also having ticks, my head, arms & legs. She wants to do some kind of immuno test on me. She orders an echo & some other blood work.
PCP says that I need iron. That my ferritin is low & probably why my legs hurt. My echo showed my MVR. She also tells me that the crazy rheumy wrote in my file that I have Fibro, which I do not have. My PCP feels like she did that because she does not know what is wrong & figures I will be happy with a label for what is wrong with me.
June 11, 08’
It has began again. My whole body is swollen. My lymph nodes are slightly swollen. Every bone & every joint hurt. Cracking & popping everywhere. I am so tired & weak but I can not sleep. A new thing is sharp pains in my middle back when I bend or stretch. I feel like a big whinning hypo but I shouldn’t have to live like this. No one should.
I had the ELISA done a year ago & it was negative. I know that I can't be dxed here but any help or advice would be so appreciated.
06-16-2008, 07:57 PM
Senior Member (male)
Join Date: May 2008
Location: Worcester, MA
Re: Undxed Lyme? Help!
sorry to hear that you have not been feeling well for a few years
It looks like you have been keeping a lot of notes . .. awesome job! . . keep doing that- that will be extremely helpful as you and or your doctors try to figure things out more.
You definitely want to try to get linked up with a doctor that specializes in Lyme, or a Lyme literate MD, or at least a doctor that will listen to you and exhaust all possible avenues of tests/diagnosis.
I was wondering if you notice any kind of a pattern with your symptoms, or whether off and on throughout each month you feel plain crappy and there seems to be no etc. I noticed a couple of times you had the 11th of each month down. Do you feel worse say, approx the 11th through the 18th of each month?
ELISA tests are pretty unreliable. I have diagnosed clinically with Lyme, but have no real positive testing yet to speak of. . . real frustrating. Right now my doc and I are going more by clinical and how I feel while on antibiotics. What symptoms get worse, which ones get better etc.
It gets really tiring to write your symptoms and your thoughts down, but in the hands of a capable doctor, this will be very valuable information.
I went to at least 10 different doctors (ear/nose/throat, primary cares, gastroentologist, asthma/allergy, etc.) some end up going to lots more docs to figure out why they don't feel well, only to figure out they have Lyme and/or co-infections.
06-17-2008, 12:27 AM
Join Date: Feb 2008
Re: Undxed Lyme? Help!
The ELISA is useless for detecting Lyme. Your better off in that regard flipping a quarter (heads you have lyme tails you don't). Seriously, get tested at a reputable Lyme disease testing center like Igenex Labs in California. Look them up on the internet, call them they will send you a blood tube kit. Have a doctor test you for the Western Blot IgG, and IgM panels. This test will let you know if you have ever been exposed to the Lyme bacteria, either in a short term or in your case chronic long term. It directly measures if your body is producing antibodies to fight off the bacteria in Lyme. There are also co-infections associated with Lyme that you would need to be tested for also. But start off with the Western Blot IgG, IgM. Let us know your results.
Wishing that your health returns.
06-17-2008, 08:28 AM
Junior Member (female)
Join Date: Jun 2008
Location: Peekskill, NY
Re: Undxed Lyme? Help!
Find an LLMD and a Movement Disorder Specialist.
06-17-2008, 05:17 PM
Senior Veteran (female)
Join Date: Jan 2005
Re: Undxed Lyme? Help!
You do take great notes! When I try to think of when I was first bit or when my rash first appeared, I think "Duh ...... I dunno."
Your records are amazing.
I saw many different doctors and had a few misdiagnoses' along the way. I saw an infectious disease doctor, who looked at my rash and laughed and told me to get out of her office. I saw a neurologist who said I had dementia (ha! that one is my peronal fav). I was told I had ear infections; I was told I never had an ear infection; I was told I had brain tumors; I was told I had multiple sclerosis.
It was harrowing, scary and exhausting going from doctor to doctor in my quest for a diagnosis and treatment.
I'm sorry you're so sick and in so much pain. It stinks! I know.
If you want to rule out Lyme, I would recommend seeing an LLMD (Lyme Literate Medical Doctor) and have your blood sent to Igenex labs in Palo Alto California for Western Blot testing for Lyme and also for co-infections.
Lucky us ... we get bitten by ticks that have more than one bacteria. Ewww!!
I have vision trouble from Lyme, called oscillopsia. What happens to me is that everything I see moves with the motion of my head. It's like watching an old home movie when the motion control was turned off. Everything jiggles and shakes in time with the movement of my head.
Even if I sit very very still, I can see my field of vision move in time to my heart beat.
I found out about the oscillopsia before my Lyme diagnosis. Out of frustration, I went to Univ. of Penn. for a full day of balance testing. At the end of it all, the doctor sat across from me and simply said "Your balance mechanisms are completely broken".
My only response to that was "Duh!!!" Tell me something I don't know.
Shortly after, I tested negative for Lyme 3 times by local labs here in New Jersey.
Then I saw an LLMD and she sent my blood to Igenex and I tested CDC positive through Western Blot. CDC positive means I satisfy the Center for Disease Control definition of a Lyme infection. Western Blot is just the name of the test.
There's a thread at the top of these boards that lists good LLMD's around the country and then some.
I hope you find a doctor who tie it all together and give you a solid diagnosis and more importantly, treatment and some relief.
Please try to find an LLMD and get tested. Even if it's negative, at least you've ruled out Lyme and it's co-infections.
Hang in there. Feel free to post anytime you need to. We're always open - day & night.
Peace and health to you,
p.s. A good LLMD will treat you based on symptoms, not a blood test. Bear this in mind.
Last edited by 6Blues; 06-17-2008 at 05:24 PM.
06-18-2008, 02:11 PM
Join Date: Jan 2008
Location: Memphis, TN
Thanks for your replies!
I wrote that list of symptoms over several weeks. I would remember things here & there. I have always had a great long term memory. I can tell you a week from now exactly what I did today, what I ate, who I talked to, & so on. That list was not easy by a long shot.
I have been on different boards since about October of last year. I never "fit" in anywhere until someone suggested Lyme. Finaly, other people know how I feel. I've thought I was really crazy a few times. I am going to find a Lyme Literate doc. I'm in Memphis, TN if anyone knows 1.
I haven't noticed a pattern in my symptoms. I don't keep a journal because it depresses me. I'll fell "normal" for a few days then like poo for a week or more. Feeling like poo is actualy the new normal for me.
I've had symptoms long before April 07' but I did have a cicular rash. I started to think of all of the different types of rashes that I have had. I had a cicular rash for about 3 weeks around Easter of last year. It was a few inches above the inside of my right ankle. I looked a little like ring worm so I was self treating it as such. I did not itch at all like I remember my son's ring worm itching.
One of my customers is the local pharm so I had him take a look because it would just not go away. On top of that I got another rash on the inside of my right thigh that was purple & red, not circular, & itched like crazy. I could have torn my skin off & been happier. The pharm siad it didn't really look like ring worm but didn't offer an other opinion about it. I figured that it was some kind of fungal thing & eventualy it went away. I never even thought of Lyme. It was nowhere near as big as the pix I have seen of the "bull's eye rash." It did however look like the rashes on this site. It was only the size of a child's palm.
After that I had another rash that lasted a month. It looked most like Pityriasis Rosea from a rash book I went through.
I've had weird rashes all of my life so I think nothing of it. I was taking Zantrex, a diet pill, a few years ago. It was time to up my does to 2 a day. My knees, elbows & face got real hot within 30 mins of taking it. I lifted up my pants & my knees were bright red with 1 huge welp. My elbows & face did the same. Just the side of my face, ear & neck.
Just recently for about 3 weeks I had what looked like psoriasis patches on my right eye lid & beside my eye. It just popped up bright red 1 day. Well on that perticular day I was having an episode of "slapped face." After I had it a few days it really started to itch. Mostly when I got hot. Then I got a patch of it in the crease of my left arm pit. So I know it wasn't soemthing contact because I can't touch my eye to my other pit, lol.
So as far as rashes go, I could of had a lyme rash last year. The neuro stuff started before that but all the joint & bone issues started within 3 months of the rash.
Lyme best fits anything I've been reserching. I've only reserched stuff because the docs have asked about different things. Anyone in your family have MS, RA, Lupus, CFS, FM, yadda yadda.
I've gotten used to my crazy symptoms. Like when I went to the ER with my heart (or was it) I was "well, another symptom. Wonder what the next one will be." I just try to think as possitive as I can. There are so many others out there with much worse things going on.
Take care all. My wrist is hurting so bad now. I just had to type that about my rashes though. Figured that a few of you might be curious. I am a super curious person when it comes to medical stuff. I love this site!!!
Last edited by moderator2; 06-18-2008 at 03:18 PM.
Reason: disallowed website - please read the posting rules
06-23-2008, 06:38 AM
Join Date: Jan 2008
Location: Memphis, TN
Maybe another symptom
1 thing that I have atributed to Cymbalta is very vivid dreams. But as I really started thinking about when my symptoms started, this could be another symptom of whatever it is that I got going on. I had the rash in mid-April. Got on Cymbalta the 1st of May, cuz I litteraly thought I was going crazy after the neuro said I didn't have MS which I was sure I had because of the neuro symptoms.
The dreams started at the end of July when the joint & bone pain started. Vivid like I don't know where I am at when I wake up. Dreams that are so real that I can't tell the difference if it actualy happen or if I was just dreaming. I've posted on a vivid dream topic before. My movement disorder/low iron/they don't know is always incorporated in my dreams. I had a dream that my mom was driving my Suburban & wrecked it. I went to get out & started frailing about. Frailing is what my husband says I do when I'm sleeping. It's more like my limbs jerk about doing their own thing.
Anyhow, I was frailing so much when I got out of the Burb that I fell to the ground & busted my face open. My mom's boyfriend was also in the Burb when we wrecked. We when to the ER & mom & boyfriend were seen before me although I was bleeding & I couldn't walk well due tot he frailing. Then family members that I never even see showed up for flu shots & simple stuff & were seen before me. when I was finally seen, the doc said I was, you guessed it, NORMAL!!!!
I guess my frustration with docs & the fact that my mom has always put her boyfriends before me played a huge roll. The kids & I were rearended 2 days later. Freaky!! The night before I ended up in the ER, I had a dream that I had 2 stroaks. Then the next day I can't breath & my heart is flip flopping in my chest. Freaky!!!
I had a dream that my 12 year son got a gun from a friend & was trying to shoot me. I tried to get way & call the cops but he followed me everywhere. we ended up in the Burb & he started shooting me but I grabed his arm & he shot the sun roof a bunch of times. I had to close the sun roof shade for the longest time because I could see bullet holes. Now tell me that I am normal & nothing is wrong in my brain?
I am totaly rational. My son & I do not have issues. Nearly every night I have these vivid dreams. They are only bad every now & again. But nearly every morning I wake up & don't know what's going on. I sleep like crud when I have the bad ones. Like just a few hours. Even on pm's or Trazadone. I haven't had a bad one in a long time thankfuly. And I have been sleeping pretty good too.
Take care everyone! Have a wonderfuly blessed & pain free week!
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