Labs Are Off to Igenex As We Speak!

I saw my LLMD again this morning, and he spent two hours with me Friday. We have gone through almost every aspect of my medical history, and other applicable data from my life... He's taking it ALL into consideration. He's going to be treating my whole body, and I really do believe that is key here. That's my opinion, and so I am thrilled to be in such capable hands.

Because of the comprehensive testing we did, and the subsequent conversations regarding the findings, and other concerns that were addressed,.. he had spent another two hours with me. Wow, that's some excellent doctor/patient attention going on there!

The comprehensive testing was really interesting, and he feels it is unlikely I have co-infections or the heavy metal toxicity as we feared last week. I did respond strongly to having Borrelia though.

Anyhoo,... we drew lots and lots of blood for all sorts of labs, we discussed several hormonal deficiencies, etc., and we talked about what treatment to start with for the Lyme.
I'm going to be starting several supplements over the weekend for my overall well being. Like I said, we suspect I am deficient is several areas, and so he's hoping to know by Friday so I start taking those right away and hopefully give me a head start on a "boost" before I leave for our holiday vaca next week.

I was going to start treatment today, but (and don't yell at me for this anyone), I really do not want to risk the possibility of any nasty herxing while on this vaca. I am systemic and have CNS involvement so I will likely not be feeling well. I honestly figure that if I've gone this long, 2 more weeks probably won't be the end of the world, JMO.

As soon as we get back, I will start on a combination of both Doxy and Samento. Don't know the dosages yet, but I do know we will keep treating until I feel better, and beyond, and then once we do take me off, we will watch in case I need to go back on. I will also be on various supplements, but don't have the list to tell you which ones yet. Oh, and a comprehensive probiotic, too. Plus, he wants me on an organic yogurt in addition to the probiotic.

Umm, labs for every possible organ, hormone, etc., and did the kit for Igenex and it got mailed off this afternoon, overnighted so they'll have it tomorrow.

Should have the results back when I return from the vaca!

Anyhoo,... think that's about it. Other bits & pieces, but overall, another very good appointment!
Think I'm going to kick back & watch a video shortly... Have a good evening everybody!

(((HUGS)))

What's BUGGING Me!

Well, as many of you know I finally had an appointment with an LLMD (ND), and that was this afternoon.

He is wonderful, and spent TWO HOURS with me today!! And,.. his office is only 9 minutes from my house! You gotta love that!


We went over my entire history, all 34 years of it... covered a lot of ground in those two hours!


So, I'm not going to keep you all waiting on what he said... He says Lyme (we knew it was, right?). What I didn't expect is that he highly suspects that I very well may have been infected with Lyme fo the past 20-25 years, and that may be where so many of my other medical issues have arisen from over all of these years. He thinks I have co-infections going on (we figured that, too). He does not think that the EM rash I had three years ago was the initial onset of the Lyme though. He thinks it was a reinfection to what I already had, and that at this point it is systemic Lyme. It is believd I have Lyme Arthritis, Neurological Lyme & Lyme Meningitis, and we obviously don't know yet how many co-infections.


He also thinks I am deficient in a number of areas. He couldn't even find my thyroid so we did an iodine test on my arm, and it is already almost completely gone. I can barely tell where it was now. He suspects several hormonal imbalances and also wants to test me for heavy metals toxicity. There's other things, too, but we are going to go into more of that when I see him again on Tuesday morning for further exams and to do various labs. After that, we'll work on a treatment plan.


Being an ND, he believes in treating the whole body, which is what I also believe. He also knows a LOT about Lyme, and many other things.... things other doctors have never taken the time to consider with me or listen to me... he is caring & compassionate, and I really feel like I am in good hands!


Today was overwhelming, and I learned a lot more about what is, and may be, going on with me than I anticipated, but what a relief it also was after my ordeal with my PCP's office & insurance and acting like I was nuts!


And so, I am finally taking steps toward a hopeful & eventual recovery.......... FINALLY!! And I feel SO validated... that feeling is so amazing!


(((HUGS)))

Tahnee

Hinesights 20/20

I decided to go back through old posts on my blogspot, and I came across a few from back in the beginning of 2007 where they had been running various tests to try to figure out what was wrong with me, prior to slapping me with severe FMS diagnosis... Of course, even in the absense of my remembering the bull's eye rash I had had a year and a half prior, they should have checked me for LD. This just keeps frustrating me.

Just thought I'd share.... I warn you though, it will be long. But, after getting to know me over the last 2-3 weeks, you're probably not surprised, LOL

This exerpt is from a post I made on 1/14/2007:

[quote]....Last night, the pain had intensified so bad that I didn't even have to move for the pain to literally take my breath away. I was having muscle spasms like you wouldn't believe,... if I coughed it felt like I was going to puncture a lung. The spasms grew so great that it felt as though I had weights on me, keeping my lungs from expanding... It hurt to breathe. It grew to a point where I was crying out quite a bit, and after awhile,.. just plain crying....quote]

Here's an exerpt from a post I made on 4/10/2007:

[quote]....This has gone on long enough, and it's clearly 'something' and so (before anyone starts yelling at me about it, lol) I DID go see my physician!

I've gotten much, much worse,... It hurts to move,.. EVERYthing hurts. All my bones, every joint, every muscle,.. my hands, fingers, wrists, elbows, arms, shoulders, neck, back, hips, knees, legs, ankles, feet, heels, and toes,.... I am exhausted beyond belief, and even with adequate sleep (7-9 hrs) I am still feeling wiped out and in need of (almost) daily naps,.. and STILL feel tired. My eyes are heavy & fuzzy, it's difficult to concentrate because I feel so awful. I don't even have to be moving to be in pain. Sometimes, it's tolerable, others it's excruciating, and I have to fight from bawling,.. and still other times I can't hold in back no matter how hard I try. My skin burns sometimes, some of my muscle tissue burns, I feel bruised on all pressure points on my bones/joints,.. I have stabbing pain in places that don't make sense, and in my fingers, hands, elbows, shoulders, and knees, feet & toes. It comes on sudden, stays a bit, and then fades. It hurts to hold a pen to write, it hurts to hold a phone, hurts to hold the steering wheel to drive, hurts to walk, even stepping on or off a curb, let alone the stairs. It hurts to type right now...

I saw my Dr last night, and she said I definitely have some sort of rheumatoid thing going on,.. question is, WHAT. She ran me through all sorts of clinical tests, which I could do, but not without a great deal of difficulty so much so that she told me to stop trying because she could see it was only hurting me. She said it's definitely effecting my connective tissue, and she's concerned... And she doesn't think it's just my osteoarthritis anymore. I got labs done,... they're running a battery of tests which I fully anticipated. The tech took about 7-8 viles,.. said they were running 10 different tests. I know they're checking for rheumatoid factors, cancer tags, Lupus, and a bunch of other possibilities. I should have some results tomorrow, and she's referring me to a rheumatologist, which I'll probably see next week. In the meantime, she put me on Rx IB, vicodin, and muscle relaxers,.... OTC stuff didn't do ANYthing to help, and actually, the prescriptives didn't do anything for me last night either until I was finally so drowsy I didn't care anymore and basically passed out. I still woke through the night with pain any time I moved.

Anyway,.. *fingers crossed* for them to figure me out & help me,............... I seem to get worse day by day. This has been going on for [a couple] years, but has been getting closer together and worse each time. This is by far the worst I've been yet....[/quote]

Then I added this post on 4/12/2007, here's an exerpt:

[quote]....my labs are back, and everything is normal except my ANA was high, not as high as it could be, but high. This eliminates me from a number of possibilities, yet also opens the door to many others. For now, the big one that my doctor was considering being a plausable cause, was MS, which she has now ruled out, thank goodness. But,.. this still leaves an open door to the original concern of it possibly being Lupus. Now, it certainly may not be,.. about 95% of people who test with a positive ANA do not get diagnosed with Lupus, but the concern here is that I do meet several criteria. Basically though, I still have a great big question mark plastered on me,.... I should be hearing from the Rheumatologist next week and seeing him shortly after. There will likely be many more tests,.. more poking & prodding before anyone can come to any sort of conclusion.

In the meantime, my medication has been changed. The Vicodin was doing NOTHING for me, except add to my drowsiness. I was still in horrid pain even though I was taking 800 mg of IB, 1,000 mg of Robaxin (a muscle relaxer) AND 1,000 mg of Vicodin.

I'm still on the IB & the Robaxin, but they've switched me from Vicodin to Oxycodone. It's about as close to Morphene as you can get in pill form, LOL. Although, I don't care for how it makes me feel (like I'm highly intoxicated), [but] it IS doing a fabulous job in numbing my pain so I am greatful....[/quote]

They slapped me with Fibromyalgia at that point, and never pursued anything else any further...... I never questioned it.

Why the abrupt hault, and then "here's your new 'label'"???

My ANAs were high and I obviously had a lot of neuropathy going on. Neuropathy and muskuloskeletal are two completely different things,.. I had BOTH. I was having cognitive difficulties even then, not near what I have now, but looking in other notes I have from then, I had a lot of red flags going up. I was also having the ear pain & hypersensitivity then that they could never explain. Why didn't they pursue things further??

Hinesight,... I tell ya, it'll bite you in the cheeks every time!!

I will NOT be a victim.

So, I've decided to start keeping track of what's going on with me, symptom-wise (as I'm sure you've noticed lately), periodically because I just plain forget later, and it's alwayschanging! I am determined to be my own best advocate now more than ever. I WILL BE HEARD.

I've had to use my cane a lot. My left knee kept getting that stabing, hot poker pain on & off, and then I begand getting what felt like shorter shin splints in the 2" right below my right knee, and so much so that I could not bare any weight on that leg, even in just standing still. I seem to be doing better with both knees yesterday & today though although they still hurt.

My eyes are killing me. The pain just keeps increasing. My orbs HURT. It especially hurts to move my eyes so I find myself turning my head instead so that I do not have to move my eyes,.. There is a constant aching pressure, and I am squinting a LOT. Light bothers me. I have turned my PC screen waaaay down to a suttle grey. The tiny font in most books? Forget that, I have to focus too hard now. Thank goodness, our textbooks are a larger font that I can still manage to do school with my kids! I am constantly rubbing my eyes... if I gently hold my hands over my eyes or gently rub it seems to relieve the pressure for a few seconds,.. but of course then I see spots afterward,... sort of like after a camera flashes. You can see, but there are these floating, dark, but transparent 'spots'. My eyes are my BIGGEST COMPLAINT today. They hurt SO bad.

I still have a dull headache. This has been constant for weeks, if not probably months now. It's the dull kind that is tolerable pain for the most part. I'm almost getting used to it being the norm now because it's always there. It gets stronger at times & sometimes I take something for it, but nothing ever really seems to help so I tend to not bother most of the time.

The pain & hypersensitivity in my left ear is continuing to increase again. I have not missed this, and am not looking forward to it causing me more grief. It has not built back up to the magnitude that it had a year and a half ago, and I truly pray it does not do so again, but it feels lke it may very well be headed back in that direction.

My hips keep locking up on me, or at least it feels that way. I can only be on my feet for about 10 minutes before I start getting sharp pains in them {my hips},.. like sciatic pain, plus a bone on bone feeling whenever I take a step. It has sent me into tears. Going to the grocery store and being on my feet for 30-45 minutes walking slowly..... I hurt so bad, and by the time I am ready to get into the car, I can barely move. I cannot lift my legs to get them into the car..... I literally have to lift them one at a time with my hands. Then, it's a struggle to get back out of the car once I get home. I have to immediately go lay down, and rely on the kids to unload the groceries. Thank goodness they've always enjoyed helping with that prior to me going so down hill again.

I have been getting shooting pains down my legs and "hot spots" in my legs, hips, fanny, back and arms. When I say "hot spots" I mean I suddenly get a very, very warm sensation in an isolated place, like a single nerve, or cluster of nerves.

The rib pain is still there, on both sides, just a few inches below my underarms, and I've been having muskuloskeletal pain on the left side of my sternum. I hate that feeling.

The fronts of my ankles, the very front and going up about 2-3" from the tops of my feet, is VERY tender. It hurts if anything touches them other than the covers, or my socks. My shoes hurt my ankles. They fit, my feet & ankles just hurt, and wearing shoes makes it worse. They are not visibly swollen,.. they just HURT. I don't put my shoes on unless I have to leave the house and I take them off as soon as I get back. My feet & ankles hurt enough barefoot. I have been very tempted to just wear my flip flops some more except that with the change in weather and as bad I get if I get cold, I can't afford to make things worse.

Still having the insomnia issue,... not being able to fall asleep until between midnight & 2:00 AM, but actually waking okay in the mornings. Not as early as I would like, but I'm not having to struggle & fight so that's a refreshing positive for a change.

I have calls in, and an email, to an LLMD clinic in Seattle. I am on the edge of my seat waiting for them to contact me back saying they can see me soon........ PLEASE! I have friends & family up there I can stay with,.. already have an offer from one, and I haven't seen her in WAY TOO LONG so I am SO READY to take her up on it!

I know treatment will be long. I know treatment will likely make me worse before I get better..... but I am getting worse anyway. I have got to get better! I want my life back......

I am just fighting right now to get it together enough for our family's Christmas trip to Disneyland in Dec......... I. WILL. GO. I don't care what I have to do,.. I'm going with them. I will NOT be the reason we cannot go. I will NOT take that from my children.

I will NOT be a victim.

RIP, Leslie

Leslie Rae Wermers, 7/7/1967 - 11/2/2008

Exerpt from UnderOurSkin.com:

Leslie Wermers, 41, died from heart failure in her sleep on November 2nd. It’s hard to imagine Leslie’s heart giving out, because for anyone who knew her she was all heart. A dear friend to so many and a tireless worker on behalf of the Minnesota and national Lyme communities, Leslie gave everything she had to help others who were sick. And everything she had was an abundant reserve of love and support–even as her own health waned.

Please visit this page to read the entire story, and see video highlights with Leslie in her work.

http://underourskin.com/blog/?p=67


From me:

Leslie’s passing is heartbreaking…..

I am one who is still struggling to be heard. I will not give up… Leslie has left a powerful legacy behind. Her passing is wounding, but I am encouraged by her strength.

Leslie obviously made a difference. We should all be inspired to help continue her efforts. We need to pick up the baton, and keep moving forward in Leslie’s honor. In honor of all those who have lost the battle against this awful disease. In honor of all those who continue to be bound by it’s clutches. The voice of Lyme suffers must be heard, and Leslie’s passing must not be in vain.

My prayers are with the family also. (((hugs)))

Patches & Treats

We got to enjoy two pumpkin patches this year... the first with our homeschool group down here in Marion County, and the second with our homeschool group up north in Washington County (where we'll be moving back to).

Oct 20th, we went to Bauman's with our S.H.I.N.E. homeschool group, where the kids got to play in hay mazes & whatnot, learned how to make fresh apple cider, got to sample it, pet farm animals, feed the pygmy goats, ride a ahy wagon out to the patch and retrieve a pumpkin, a gourd and pick an ear of indian corn off the stalk. Then we rode back and got to sample the farm's homemade apple cider donuts,... yumm!

It poured rain that morningm and so we thought we would have to cancel, but just as it was time to go, the skies cleared for us. And just long enough too, as no sooner did we get back from the patch, it began to pour again. The walking was hard for me, and I ended up in pain the rest of the day & the next, but we had fun.

Then, three days after that field trip, we went to Baggenstos Farms with our L.I.F.E. @ Home homeschool group, where the kids again got to play in hay mazes, climb hay rolls, and whatnot. We rode hay wagons out to the best pumpkin patch we've ever seen. The day was so beautiful, too. After pumpkins, we rode back to the main barns where we got to learn about potatoes, and the kids got to take home bags of red, yellow & purple potatoes.

We did their 5 acre corn maze, and it really didn't take as long as I was afraid it was going to. I was going to sit it out, but I didn't want to do that to my kids... I am determined to continue to participate in things! It did a number on me though, and I ended up in excruciating pain & bedridden for 5 days after. :(

They do a picture out of their corn maze every year, and then do an arial photograph of it. That's your 'map', and your only map... so you have to really pay attention. It was neat!

For trick-or-treating, Courtney dressed up as a veteranarian. Something she is thinking she may want to be when she grows up, and she is already planning to save her scrubs for when she starts volunteer work & internships at the humane society & local vet's office in a few years. Ashley dressed up as Lilo & Stitch... she wanted to be as authentic as possible, but I made her wear clothes underneath her grass skirt & coconut bra.... not warm enough in October here to be "nekkid" underneath, LOL! Brittney's costume cracked me up,... she decided to go as a 'Domestic Goddess'. It was a hoot!

I have still been doing so bad (pain & everything) that I didn't think I was going to be able to take them this year. Scott was going hunting for this last weekend, but he came home long enough to take the girls treating. And, he brought the scooter for me so I could go, too. I didn't want to have to use it, but I could not have handled going otherwise.

It ended up being a pleasant evening, and while the girls skipped from house to house around the neighborhood, my sweet hubby walked beside of me while I 'motored' along.

I think we need to get a new battery though because it didn't last as long as it used (when his mom used it a year ago). It did well enough, but ended up running out of juice & fizzled out on me about a block from home. I started to cross to the other side of the street and got to the middle where it just stopped, LOL. Poor Scott ended up having to push me the rest of the way back home!! It was so embarrassing, but yet it is really funny at the same time. He said, "It's okay, hun,... I still love you even though you're handi-crapped". Handi-crapped.......??? *rolls eyes* Poopy-head, LOL

I sure hope I can get in to the alternative clinics, and that these new treatments help me. I've got to be feeling better for DL in Dec! *ack*

Anyway,.... I've loaded new pics for those who want to see them.

(((hugs)))




Bauman Farms:

Baggenstos Farms:

And,... more of the costumes:

My Life in the "Lyme" Light (UNEDITED)

I just have so much running through me head again today that I decided to compile it all together... I am just raelly strugglnig here and want my life back.

I have been in debilitating states of health off and on, more on than off, for the past 3 years. A year and a half ago, they tested me for Mono, Lupus, MS & RA (all came back negative) before dignosing me with they called "severe" Fibromyalgia. Fibromyalgia seems to run in both sides of my family so I accepted it as such. However, I just cannot seem to get any better. I have always had something going on with me as long as I can remember. If you skim my profiule on MD Junct, you will see I've had something just about every year for at least the past 16+ years. I'm even missing a few things in that list, I'm sure,.. one being suspected of osteoarthritis since about 2000-2001 thereabouts as I had zero % cartlidge left in my left kneww and only 5% left in my right knee.

Anyway, despite all the health issues I've been through, none have ever had me in such the debilititaing states such as I have been for the past 3 years (apart from the Menorrhagia right before my hyst 7 1/2 years ago).

Each year, I seem to be getting worse now, especially in this past month, and that is why I had begun doing more extensive searches online in regards to the Fibro. Trying to find out if all my symptoms were really to be attributed to FMS or not because I have been feeling like this is so much more. I do not doubt that I have had fibro symptoms since highschool, but this just seems like SO MUCH MORE. That is when I started seeing things pop up pointing to Lyme, and that somewhere around 75% of FMS patients are really misdiagnsed Lyme. This caught my curiosity and so I looked further, then I became alarmed because I match so many of the symptoms,..... including suddenly remembering that I had a bull's eye rash right before all of this started.

I had not gone in to see a doctor then as my husband & I had just started our business a coupole of months prior and did not yet have health insurance. That came 6 months after the bite, and by then, I had forgotten about it. however, I recalled it after seeing the Lyme info here just a few weeks ago, and remembered that I had taken a digital photo of it and stored it in my old laptop. It took me half the day, but I finally found it, and I was also thankful to find that I had dated the photo in it;s filename: Aug 22nd 2005. Right before I started going downhill with all of my current problems.

I have proof of the EM rash, and I am very symptomatic of LD, yet my doctor refuses to see me. I had an appt., and they called and canceled me, telling me that unless it was for something other than Lyme, not to come in. I argued with them, and they said they would do a titer test, but that was it. They refused a westernblot and even more so, refused to gothrough igenex. This was only a few days ago, and I haven't gone in to the lab yet because I am so upset that they acted like I have brain damage and I was repeatedly told "there is no Lyme in Oregon". I thought if you had an EM rash, you were supposed to be treated with abx no questions asked?? From everything I have read so far (& that is a lot), I meet a solid criteria for clinical diagnosis yet my doctor will not see me for it.

I have found aLLMD naturopath who will see me (I have to wait until at least next week for after payday), and run labs through igenex. I haven't seen him yet, but based on my history (I just sent him key points - like I was going to post here although it appears I'm doing the long-winded thing again), and he said it strongly suggests Borrelia. he also said, we won't know for sure until all the tests are done.

These are the symptoms I have been experiencing the past three years since the bite,... some have mysteriously come & gone, some were for a short while then never recurred, and others have been continuous:

- EM Rash (bull's eye) (only last about 1-2 days if I can recall correclty)
- Picked a tiny black thing out of center... thought it was a scab at bite center, didn't examine it. It was not much bigger than the periods in these sentences.
- stiff, painful joints and muscles - freeze up on me
- cracking, crunching joints especially in neck and knees
- Burning bones sensations in arms, legs, hands, feet, and spine
- muscle & nerve twitching, not usually in face but have mostly other places, mostly my back & legs
- "crawly" sensations, maybe just blood flow in veins? feels creepy like bugs crawling on or under my skin sometimes.
- eye floaters, always had them, but they were pinprick-sized "dots", after bite had longer (maybe 1 cm so still small) wiggly ones,.. currently do not have them though.
- Pinched nerves easily in arms, hands & legs, go numb & tingling... have had constant half numb-half tingling in my left hand pinkie finger ever since bite. has never let up and continues even today
- headaches and sinus pressure without obvious reason
- Intense pressure in my head,.. feels like my brain will pop out of my skull at times
- Sharp pinging pains in my head, various locations, usually one place at a time
- Sharp eye pains, mostly strong pressure simialr to the brain pressure, feels like it's coming from the inside
- Unexplained fevers and chills,.. these are different feelings from when I know I am sick or having thyroid issues
- unexplained ear pain & hypersensitivity to sound (this lasted a year and a half then suddenyl stopped for a year and a half, and seems like it may be starting back up again. audotiry tests came back fine, no hearing loss even though at times I felt like I did, and others like i heard too well. told nothing was wrong so continued to suffer
- Sore throats, not so much sore but scratchy,.. comes and goes
- My hair continues to fall out even when my thyroid levels are fine (I am hypo - had grave's 8 years ago & RAI treatment). Thankfully, it seems to grow as fast or faster than it falls out so no balding.
- my glands in my throat are often mildly swollen, but mostly they are tender
- IBS: i go back and forth between constipation and diahrrea
- I seem to have all kinds of food sensitivities that i never had... i get nauseted and bloated, gassy, everything seems to make me not feel good after i eat
- only very periodic and rare, but i have had episodes of heart beating much too fast when i was just sitting, came on sudden, others it has seemed to skip beats. these episodes have been rare
- My ribs often hurt like they are bruised, especially high up within a few inches of my underarms
- I get horrific pain in my neck, shoulders, arms, hands, back, hips, knees, legs and feet
- My heels burn like they are fractured and can barely walk on them when they are like that. it's worse in the mornings, but can last all day sometimes
- i have been becoming increasingly off-balanced & lightheaded. I bump into things or catch myself. i have had episodes where i have felt I suddenly had no depth perecption and will fall past the last step or two on the stairs or off the curb, thankfully only scaring me more than injurying
- I have terrible brain fog. I often forget what i'm talking about mid senstence. I confuse things. I can forget something within moents of being told, not always but it has been hppening. I make mistakes. I've had to pull myself out of our business completely b/c of mistakes. I make spelling errors, typos and invert letters all the time. I used to be very proficient in elnglish. I usually go thorugh and try to edit to ctch what i can, but I still miss things. i can't seem to find all my mistakes even when checking over things a number of times. i am not editing this however just so you can get a feel for the all the numorous mistakes i have to go back and correct. this is not usualy for me. i feel dumb now I have to edit and re-edit all teh time now just for my writings to look half way decent or normal anymore. I lose a great deal of time going over and over my words trying to find all the errors and fixing them, and even then I am missing some. How this all looks has become the norm for me. Most people do not relaize becuase I work so hard and fight to correct it.
- I have severely alterterd and poor memory function, both long and short. I have been growing more and more concerned of this like I am going to end up with alzheimer's or dementia. it's scary to feel this way. I get confused and forget how to do things. I often feel like I am lsoing my mind or going crazy. I have VERY limited memories from my childhood, highscool and even from when my children were babies and toddlers................ it's like I wasn't even there for most of any of it anymore. Yet some things I can still recall great deal of. but it's like huge pockets of time are just gone!
- I can often know exacrtly what I want to say but cannot seem to get my words to correlate correctly with my brain.
- i often get an upset stomach or stomach pains after sex. I had never experienced anything like this before, and many things on my list of symptoms I never would have thought could be related until I saw them compiled together on lyme sypmtoms lists, but since they are i am now inclusing them
- My vison has been an issue. I have a stigmatism, but I've had basically the same Rx since I was 10 years old. I haven't gone back in b/c it seems as though this is related to my other issues and i'm hoping it will clear back up if i can get treated properly. things are fuzzy, blurry, my eyes hurt trying to read so I have really pulled back from trying much anymore other than helping my children with school or online stuff. thats' still quite a challenge.
- ear buzzing and ringing, apart from the pain and sensitivty complaints I also get a fuzzy noise, reminds me like, although much quieter, a bunch of crickets chirrping, sometimes it's a louder ringing tone, like if you struck a metal rod,.. that ringing, vibrating sort of sound
- I have been having breast pain, just in my left breast. Mammogram and ultrasound came back clear. I was told perhaps fibrostic cysts, but yet the scans were clear and I still feel pain & itching
- I have gained a lot of weight in the last two years, and I cannot figure out why, except the obvious lack of exercise, but still I am not an over-eter and I eat healthy mostof the time.
- I get night jolting frequewntly, some nights worse than others, some not at all, some just my legs, some my whole body
- I have sever insomnia sisues ever since the rash. I never had troubling sleeping in my life before that. I could usually fall asleep almost before my head would hit the pillow kind of thing. now, once I do finally fall asleep, I continue to wake consistantly through the night, then I have horrible time waking in the mornings and lose half my day just trying to get out bed. Some days I cannot even open my eyelids. Thankfully, that has not happened for quite awhile.
- I'm tired all the time, fatigued, moody, no energy
- depression is becoming an issue. i have not had to deal with any form of depression in 7 1/2 years since before my hysterectomy, none. but now i am feeling more and more alone in what's going on with me. I feel like a burden to my family now, and that I am letting them down. This is causing depression to set in although I try to fight it.
- I get stabbing pains in my neck, shoulders, back, legs, feet, but especially my knees lately. The pain is like a hot poker stabbing & twisting and has been enough that I have even screamed or cried during some episodes. I feel I have a fair threshhold for pain so to scream or cry tells me it is pretty intense pain. I usually try to hold it in, but more and more lately I find myself stopping and just leaning up against the wall trying to fight the pain, and tears will just start to roll down my face.
- most pain meds do not help enough. many don't even take the edge off. the only one that really seems to help is oxycodone and robaxin but I try to avoid them. I often feel drugs just make me non-functional, more so then what is already going on with me, although some relief from pain is necc at times.
- swollen joints... they don't tend to look puffy or red, but feel "full" a lot. I do deal with a lot of water retention altely though
- I have never been a big drinker, but on occasion I could always hold my own.... these days I have to be really careful because I feel quite tipsy after only one beer, or even half a glass of wine. It doesn't even really appeal to me anymore because I get nausetad from it and feel awful.
- bone pain.... they can ache so bad or burning sensations like the marrow itself is on fire. I get this the most in my arms and feet
- Feel like there is constant sinus pressure in the bridge of my nose and cheekbones/browbones and skull. Like I've been hit in the face with a shovel.
- my neck hurts so much. I have never experienced the kind of neck pain and stiffness I have been having, espcially this year. Some days my head feels so heavy on my neck that it is difficult to hold it up without holding my hand on the back of my neck to support it. I get "catches" in my neck at the base of my skull constantly.

I'm sure there are things I am forgetting, but as you can see, I am not well. Something is taking over me, and I really believe now that it is Lyme.

I live in Oregon, my doctor claims there is no Lyme in Oregon. The year I had the rash was 2005. It was August 2005 and that was the last year I had a large flourishing garden I spent nearly every day in. I tried to have one the folowing year., but I had to let it go becuse I have been declining so much. I was always an active person and a very hard worker. I handled most of the manual labor around the house, especially when it came to landscaping, moving furniture around, all sorts of heavy work, and I prided myself in it, as well as all the cooking & baking I used to do. Now, I can do NONE of it. My husband is away working most of the time so our yard & home look like crap most of the time. this stresses me out to no end. I have only managed to go on vacations with family this year by getting a lot of bedrest before and after and taking a hiugh amount of pain killers during, just so I can still be apart of making memories with my family. I don't want to become invisible.

I often use furniture to help me get around the house. I have a cane, although I avoid it's use in public. I am humialiated as I am only 34 years old and I have very stuborn pride. I had to use a mobile scooter just to be able to go trick-or-treating with my husband & kids this year.

Thankfully, we own one... my husband bought it for his mother to use on one of our last family trips together before she died of cancer because she wouldn't pay to rent one, and we knew she needed to use one. He figured at the rate I seemed to be declining, I may end up needing it myself later, and he was right. It has taken a year, but I have finally reached that point. I still avoid using anything most days, but I could not have gone with them without that assistance. I do have much better days where I can do more and enjoy life, but that was obviously one of my worse days.... and they seem to be incresing all the time.

What if my tests come back not Lyme,... this caanot just be Fibro!