*I originally posted this under "General Support" but think this topic might be better suited for my rant Let me know if I've done something wrong by cross-posting!
Hello, I've just joined this forum after reading for several weeks. I'm sick and lost and have no clue where to turn. I am a 30 year old wife and mother of 4 and my life as I knew it disappeared 2 years ago. I've been to doctor after doctor and have had a multitude of tests run--all coming back "normal". I've several specialists, all who have deemed me a "puzzle" and have informed me there is nothing else they can do for me. Most recently, I went to the ER for chest pain, tightness, an irregular heartbeat (every other beat), tingling, dizziness and fogginess. While there, a nurse saw my chart and just a few of the strange symptoms I have been dealing with and came in to talk to me "off the record". She asked me if I had ever heard of or studied Lyme Disease. In fact, I have! I even had a neurologist run a routine blood panel for Lyme. She said it was negative and that was that. I've since learned that those tests aren't accurate. As for my nurse, she told me not to mention a word about our talk to the docs that were treating me. She told me to check into it, call around, find some support groups. She, in fact, was treated for Lyme after years of suffering and was drawn to me when she saw my chart. Needless to say, I'm concerned but how do I know if this is what's plaguing me?
I'm going to list my symptoms in hopes that some might be familiar to some of you. Should I consider a LLMD? A different specialist? Should I just give up and hope that this all goes away? I'm confused and frustrated and angry. I'm exhausted.
My symptoms started in April of 2008: Insomnia, flashing lights when I closed my eyes, tingling in my left hand.
July of 2008: I went to Cedar Point as a class chaperone and felt "off" from the get go. I went on a few rides and immediately was dizzy, cloudy, left hand tingling, nauseou. I spent the day feeling sick, using the bathroom and trying not to pass out. By nightfall, I was rushed to the ER via ambulance after my entire body was tingling and I was having difficult breathing. I thought I was going to die.
From that point, life has been hell. Since that night, I have experienced:
*Complete and utter exhaustion *Brain fog, forgetfullness, confusion *Heart palpitations *Racing heart at night *Shortness of breath, tightness in chest--during episodes of heart abnormalities, crampiness, sharp pains *Tingling mainly in my left hand but has also on the left side of my face and around my mouth *Headaches (worse than any headache I've ever experienced) *Cramps/aches in left hand *Pressure in my head/behind face (not sinus pressure)almost like my head will pop off *Extreme dry eyes--I can no longer wear contacts--also bloodshot *eyes--a glazed over feeling *Chronic swollen glands in neck *painful breasts (fibrocystic) with leakage *Swelling under left armpit *Swelling behind left knee *Petechiae on legs, feet and scattered on arms/chest *Ears turn red and are painful/hot *Sensitive to light (during an episode) *Sensitive to sound (during an episode) *Can no longer drink alcohol (Even a small glass of wine makes my heart beat funny, I see spots, I'm dizzy and I feel sick) *Exercise makes me feel like I'm going to die of a heart attack *Left calf pain--literally feels like something is moving around, aches, pounds *Right shoulder pain--no apparent reason *Left back pain--no apparent reason *Times of stiff neck--strange feeling--doesn't usually stick around for too long *Strange sensations--almost like someone is blowing on me while I am wet. Often from head to toe, sometimes just my legs. *Motion sickness/heights--never bothered me before--now even swinging at the park makes me feel like crap and nauseous. *Weight gain and feeling bloated *Strange menstrual cycles, often heavy
Honestly, I'm sure there are more that I am forgetting but I think you get the picture. This is all a vicious cycle and I don't have all of the symptoms all at the same time. The heart issues, for example. I'll have a really bad week--it'll take me a week to recover--I'll feel ok for a bit--almost normal for a couple of days--and then it all starts over. The other stuff is all frequent as well and ruining my life.
Please share your thoughts, opinions, ideas. At this point, I'm not sure where to turn.
Thanks so much!
Melanie
Posted by Melanie79 (Member # 25598) on :
I feel I should add that I have no recollection of being bit by a tick, nor have I experienced the bulls-eye rash.
My only known association with a tick is pulling one out of my daughter's scalp a few years ago. I was told she was fine and then she developed a huge glandular swelling near the bite. She was on antibiotics for 2 weeks. Now I worry [Frown]
Posted by sutherngrl (Member # 16270) on :
Melanie, did you post in "seeking a doctor"? Lyme Disease is a "clinical" diagnosis; and only a LLMD can make that diagnosis.
Many of your symptoms sound exactly like mine. Fatigue has always been a huge one for me. And the irregular heat beats and the pain. Lyme can present itself in many different ways and that is why you need a LLMD. I also never saw the tick or the rash.
The test are only used to back up the clinical diagnosis. Sometimes you have to take antibiotics for a while to have positive bands start to show up on your test.
Regular doctors do not know this stuff for some reason. They don't want to know! That is why if you suspected cancer you would go to a cancer specialist; if you suspect lyme, go to a lyme specialist!
Don't worry, just take the steps needed to find a LLMD!
I'm thinking that nurse was your angel!
Posted by Melanie79 (Member # 25598) on :
Yes, I have posted under "Seeking a Doctor". Thank you!
Have you noticed that your symptoms are worse at certain times? Mine are on a cycle, for sure, but are more often than not, horrendous in the later afternoon, evening, sometimes through the night.
I feel as if my nurse was a sign. My symptoms weren't that much worse than what I deal with on a daily basis. They just lasted longer and I was ****ed off. I drove myself to the ER. They transferred me to a neighboring hospital and I talked with her the next morning. I figure that's got to mean something, right?
Melanie
Posted by gatorade girl (Member # 24896) on :
Melanie, My symtpoms are very similiar to yours. I often feel like I am on a tea cup ride. I went from doctor to doctor...misdiagnosed with several things including Lupus. I ended up having Lyme and Babesia. Go to a LLMD and get it checked out. The nurse is a sign.
Posted by Wisconsin (Member # 14522) on :
Melanie,
Please go to an LLMD. There just isn't help right now through traditional channels. Don't waste any more of your precious time on them.
Yes...symptoms are often cyclical. You'll hear that time and time again.
Posted by Melanie79 (Member # 25598) on :
How can I find a GOOD LLMD? I've googled without much luck and I've posted on the "Seeking a Doctor" thread but so far no hits. I know I'm going to have to drive to see someone...I just want to make sure I'm not wasting my time, energy and money on someone who isn't going to be able to help me.
Thanks so much! It means a lot to know that there are people who understand what I am going through.
I went to my last doc when I developed petechiae all over my legs and had no clue what it was. He told me to use a different razor and to go home and look up the definition of a hypochondriac. I've been pretty down since then Posted by 17hens (Member # 23747) on :
Melanie,
I've had over 3/4 of the symptoms on your list. You are not crazy or alone. You just haven't found a doctor who has been trained to diagnose and treat lyme yet.
It took me 9 months to find the right doctor. Do whatever it takes to get to one asap. He'll likely save your life.
And although I'm sorry you've had to join our "club", welcome!
These people are great - so many who care and are willing to share their experiences to make it easier for the ones who come after. Such a blessing!
Posted by timaca (Member # 6911) on :
Also get tested for HHV-6, EBV, enteroviruses, Cpn etc. Do a search at lymenet using my member # and the words "viral testing" and you'll find some info.
Other pathogens can cause the symptoms you list.
Best, Timaca
Posted by Need Lots of Help (Member # 18603) on :
Melanie,
I have several of your symptoms. It took me 20 years to get a lyme diagnosis and I just got it Nov. 2008. I treated with oral antiboitics, and 4 days ago, I started IV.
Doctors are hard to find, but someone should come along with a list closest to you. Now, mind you, the closest doctor to me is 6 hours away. Where are you??
But, I drive the 6 hours because I want to get better. Next, most LLMDS will not accept your insurance. Just a few things to remember. Getting lyme treatment is tough and you need to become your own best activist. You have to fight for yourself.
Good luck
Posted by Melanie79 (Member # 25598) on :
Thank you all for the info, the welcome and for understanding
Timaca, I will do a search using your number. Thanks!
Need Lots of Help, I am in Indiana and willing to drive.
Posted by TF (Member # 14183) on :
You have named an awful lot of lyme symptoms. Look at the symptom list on pages 9-10 of the Burrascano lyme treatment guidelines found here:
See how many you have! I had terrible dry eye from lyme.
The swelling in your arm pit is most likely another swollen lymph gland. Same behind knee. The ears turning red and getting hot is also common, especially among children with lyme.
So, it really, really sounds like lyme to me. And, the symptoms do cycle.
Find the best lyme doc you can. It will be worth every penny to get your life back. Call the lyme support groups in your state (see Support Groups on left side of page) and talk to them about who has the best success rate.
Lots of doctors treat lyme disease, but not that many get rid of this disease for people.
I got rid of my lyme disease 5 years ago and I am still symptom-free, enjoying my life. That can be you too! (And, I never saw a tick or a bulls eye rash either. I had this illness undiagnosed for 10 years.)
Posted by dh in ga (Member # 25588) on :
Melanie, Do the research and find a LLMD asap. I spent 3 years and countless trips to every ologist in the state only to be told that I had g.o.k.(god only knows).I did the internet research and found a fibromyalgia doc that is treating me for lyme.Been on ABX for 5 months now.Lifes been h*ll for 3.5 yrs - wish i would have found a LLMD sooner. Best Wishes
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Let me know if I've done something wrong by cross-posting!![[Frown]](frown.gif)