Would like to get to know you. :)

Welcome Alhanna. This forum was truly a lifesaver for me. I am an avid gardener and remember a poison ivy type rash, but with black tips (tick larvae?) in May of 2000. That month proved extremely stressful with a death in the family so when I felt horrible I chalked it up to stress. I didn't really start severe symptoms until 2005 with an infection in my mouth and a feeling of weak legs. Started lots of dental work and ended up in ER with stabbing chest pains and severe anxiety. Over the next 4 years, I went to numerous numerous doctors, and was told menopause, anxiety, possible thyroid, you name it. Couldn't move my neck, visited chiropractor. No estrogen, started HRT. Finished dental work. More and more strange symptoms including joint pain, insomnia, daily headache, severe fatigue, tight jaw, facial pain and numbness, visual problems, just to name a few. It was only after finding a great endocrinologist did she insist on lyme testing. I told her I had already been tested and decided to get a copy of my lab work from 4 years prior. BAM! 3 lyme bands! I never knew the controversy surrounding lyme and its diagnosis and treatment. I have been in treatment since March 2009, first LLMD who I didn't like, then infectious disease (ugh) and finally the LLMD I have now and LOVE. I am feeling really well. I am not without symptoms but that's ok. My husband and son were both diagnosed this summer so the journey continues.

Alhanna,

This board has been extremely helpful for me as well. Sometimes being this sick around "normal" people gets really scary, but somehow coming here and knowing that other people have experienced the same things and survived makes it a lot less scary. Sometimes being alone in this can be the scariest part.

My story is a long one, and I'm still working to accept the fact that this infection could have been cleared so many years ago if not for...let's call them unsatisfactory...medical professionals. I was diagnosed with Lyme 8 years ago, treated for a short while by a very reputable LLMD, but then when insurance denied IV antibiotic coverage, I was referred (by my insurance company) to an infectious disease specialist who basically canceled out my Lyme diagnosis. She diagnosed me with mycoplasma pneumonia (still active), parvovirus, hypoglycemia (which I don't actually have) and called me a "deconditioned teenager." She couldn't help me. Next doctor: chronic fatigue syndrome. No help. Next diagnosis: Fibromyalgia. SO MANY MEDICATIONS, SO MANY SUPPLEMENTS...no help. During roughly a 6 year period I tried every treatment under the sun, and the one thing that did help me was weekly IV vitamin C therapy, for EBV (which I still have/have again now).

FINALLY about 6 months ago one way or another I found my way back to Lyme, and have been working with a new LLMD ever since. I was bitten by a tick when I was 10. They gave me antibiotics and as far as I know I didn't show any symptoms (as far as my parents remember anyway - I was 10 I have very little memory of that time). By 12 I was having chest pain (diagnosed with asthma...another condition I don't actually have) and joint pain (they called it growing pains). By 14 I was having a lot of psychiatric symptoms, which I'll never know the cause of. Could've been Lyme. Could've been genetic predisposition. Could've been teenage hormones. At 17 I got mono, didn't rest like I should've, and that's when things went downhill. Fatigue and pain like crazy. I missed more than half of my senior year of high school (still managed to graduate, although I went from an A student to getting my first -and only!- D...traumatic for an overacheiver!) This was when I was doing vitamin C therapy and I was still pretty sick, but I managed to scrape by, living what I call a part-time life.

In the last couple of years I've been under a lot of (unrelated) stress, and was living in a house that had 2-3 serious floods a year. I think the combination of stress and mold toxins, mixed with all the old unresolved symptoms was responsible for this downward spiral. The cognitive/neurological symptoms have only really started in the last few years but at this point I feel like a total idiot 24/7, like I was born yesterday and don't know anything anymore. And most recent has been the super low blood pressure, poor circulation, constant pins and needles, and total weakness.

That's my experience with Lyme (and who knows what else). I only wish our society would take Lyme a lot more seriously...I've always thought my experience was so out of the ordinary, but it seems like everyone who ends up having Lyme has a similar experience...it doesn't seem like it should be THAT HARD to diagnose. I think the hardest part is that everyone's so quick to go out of their way to try to prove that all of this is psychological. I wish you all the best and sorry for the long rant...one of the side effects of Lyme for me seems to be that I can't really think/talk about anything else.

 

Alhanna,

My story began in the spring of 2005. I started getting strange tingling, prickly feelings on my feet and legs. My face felt like I had walked through a spider web, I was always brushing away something that wasn't there. At times it felt like someone was drawing on my face. Then I had an inner vibration all over my feet and legs and prickly sensations. It now covers my entire body. I made many doctor appointments but no one could come up with anything. Soon I was having pain in my upper back on my spine and under my left "wing" as I call it. An x-ray and a CT scan showed nothing. In August of that year, my sweet Mother passed away suddenly. That's when I had my first panic attack. I went to the ER in the wee hours. That was my first trip to the ER as well. I have had many since. After that, everything went south. I was at work and had what I thought was a stroke. I had such pressure in my head it was pushing me down to the ground and it felt like my brain was moving around. I was dizzy and couldn't hardly walk. I had a seizure on my right side and just felt completely out of control. I instantly developed bells palsy and couldn't talk properly or hold my head up. I went to the ER, had a CT scan of my brain, but nothing showed up. I saw a neurologist and she said I was depressed. NO DOUBT! Then I paid for a MRI of my brain because I thought maybe it was MS. Nothing showed. That was Sept. 2005. I haven't worked since. I had such pain everywhere, I couldn't get enough sleep. Such deep fatigue I had never felt before, with the inner strong vibrations and ringing in the ears. I hated being in my own skin.

In the following June I saw a reumotologist (sp) who diagnosed me with Fibromyalgia/Chronic Fatigue syndrome. I was so happy to finally know what I was up against. I was in tears. Things went on, I slept and slept and slept, and took lots of baths for the pains. I have been on every neuro drug there is. Nothing has seemed to help. I have had an MRI of my brain and spine almost every year, nothing shows.

In July of last year, I had reserched Lyme and was amazed to see that I had or had had, about 60 of the symptoms. Reading peoples stories it felt like I had come home. We have a cottage in the mountains and I had always checked my children for tics, but I guess I must have missed myself. I asked my MD to be tested. He of course did, the ELISE, and of course it was negative. That was the end of that. He would not go any further. I carried on, not knowing just how insensitive it was, and thought I must be wrong. Only I got worse. The head pressure, pushing me down, tremors, inner vibes and all over feeling like I was being attacked got worse. It would get really bad for about a week every couple of months. Very scarey and dibilitating. By the end of December of last year, I decided I needed to look into this more, and talked with dear Dr. M. here in BC for over an hour, and he told me in his opinion, I had Lyme Disease. He told me what tests to have done at Igenex and my MD agreed to sign the requisition. It came back Positive for the CDC as well for the IGg and negative for the IGm. My MD started me on 30 days of Biaxin and Flagyl (under consultation with Dr. M) but that is all he would do. I now have a LLND who is treating me with abx and I also am taking chinese and holistic meds along with accupuncture. I am in month eight and hanging on to hope that I will have some relief. Now I can't sleep. Insomnia is hard to deal with. Oh yes, I also saw an ID doc who did have more co-infection testing done, all negative, but other than that, said no way I had Lyme. His only reason was that Igenex wasn't the top of the field? What does that mean??? He didn't offer to tell me who was though. Anyway, my MD is not happy with me that I am taking abx, but is kind of working with me. My LLND is wonderful, thank goodness for him. Sorry this is so long. I think it is my therapy for the night. Not doing too well. Thanks for listening.

I hope your night is a good one.
Maxine