So, even though Ive been doing a lot of research lately, I've really dived head in since I've found a doctor that's finally labeled me. Funny how we try to not be "labeled" most the time, I am finding comfort in it. Being labelled- labeled? sp?- means I am not crazy! For so long I thought everything was in my head, or that I had worked out to hard, or was just being lazy (well, sometimes those are true, lol) but it's such a DEEP ache when I am flaring. Nothing like an overworked muscle. No amount of sleep can touch the fatigue and sometimes the insomnia is unbearable. Oh and one of the saddest things, for me anyway since I'd always been quite the donor before getting sick, was that Im no longer ALLOWED to donate blood for fear of infecting another person. They are only able to filter 97% of pathogens out of the blood at the banks.
I've known for months and months now, myself, that I have Lyme but the nurse (the doctor NEVER saw me at this medical facility in the 2 yrs Ive been going there now) said my tests came back fine. What I didn't know right then was that the testing for Lyme is extremely innacurate and has been altered to produce more false results! No this isn't something in my head- they really did take off multiple bands they test for because "too many" people were positive. The insurance companies do not want to pay for so many peoples weeks and weeks of antibiotics, for the research that needs to be done on this disease, and for the aftercare for people like me with chronic lyme disease and all that ensues. I've seen many others blogs and other activists liken it to the "new age HIV/AIDS" fight.
The infectious disease society of america says there is no such thing as chronic lyme disease because it can go into remission. However, studies show most people are only in "remission" for 4-5 weeks. The hold very tightly to the literal term of it being a period without symptoms- but we are still positive for the disease and when it cycles again in our systems we are either termed as relapsed or reinfected. Which is why their guidelines say not to treat with longterm antibiotics- that it won't do any good... however, it could save our joints cardiovascular and nervous systems!
Anyhow, I've been on a search for what "we" term as a lyme literate medical doctor. The closest Ive been able to come with my insurance is an infectious disease specialist in Tampa. He seems like a nice guy though he didn't listen very well... BUT he did have the knowledge to test me for any co-infections that are common from tickbites especially when Lyme is involved. He also started me on a high dose of doxycycline..which reminds me I still have to take tonights dose lol.
I went Tuesday and had my blood drawn (after almost a 2 hr wait) for ehrlichia, babesia, and bartonella.
I figured I would call when the office opens Monday and see if they have the results in...
Other than the nausea and really bad prickly/itchy skin when working out (Im assuming from the doxycyline) I'm doing pretty good right now. My joints- which it's usually my shoulder and hips- don't hurt. Yay! I've been getting naps in so I think that's making the insomnia worse- I seem to only be able to sleep 5am/pm-8am/pm so it totals up to 6 hrs a day lol.
My friends/ personal trainer and instructor went away last weekend for our network marketing meeting. I really wanted to go but it didn't work out that I was able- no one to room with, my family thought they could go then couldn't, and honestly I don't think I could've handled such a long time sitting ona plane/tarmac and sitting for the meetings. Hopefully next time will work out. It did give me opportunity though to just RELAX without "having" to go to the gym. I love going, it makes me feel good (usually), I love hanging out with my gym friends but sometimes it's too much of a strain and I feel Like I still have to go in order to keep up appearances.
So I slept- I took them to the airport thursday early evening, went home and slept til friday midday... then went back to bed and slept some more! I felt like such a lazy louse but I NEVER allow myself to tap out like that. I try to be in the middle of as much as possible in my circles of friends, I'm afraid that if I use this to start missing gym classes/ girls night outs/ect. that they'll stop asking but last weekend was me and the sandmans time. No one could ask me to be anywhere because they were all across country! well, most of them anyway, I did meet up for a movie with a small group of the girls at my friend nicoles house and we had sandwiches and chatted- then it was back to sleep : )
Anyhow, I do feel better now that I have been officially diagnosed.
Saturday, January 29, 2011
Sunday, January 16, 2011
Getting onto the subject of Lyme
About 5 yrs ago I became sick, had very achy hips and shoulders, gained weight ( though I've always been chunky), was very fatigued and experiencing some pretty bad headaches and memory loss.
My then-doctor, ran a blood panel and all that came back was epstein-barr positive and she concluded I "must" be getting over a mono. infection and for me to lose wieght. We assumed I had gained due to no longer being in high school marching band and starting college (im around 19 at this specific point in time 2006)
So a few months go by, I got a little better, then got a little worse... One thing that stands out it I had a major migraine episode while at work that turned into my mom having to come pick me up and being stuck in bed with flu-like symptoms again for around a week.
Again, Doc does nothing except test for lupus and rheumatoid arthritis which both come back negative ( actually the ANA for RA came back borderline, then normal).
More time goes by, more visits (averaging about 1 every 2-3months, which for me was A LOT as Id never really been sick) Somewhere in all this time however, we did re-discover that I have hashimotos hypothyroidism which is now regulated, Ive been hypothyroid since 14 yrs old but went off meds for awhile due to a quack doctor.
On to a new doctor in 2010 and after 2-3 visits to her (one of which was for the most excruciating shoulder pain in my life!) she tests for lyme- elisa is positive western blot igg negative (though 2 strains were reactive) and igm negative (1 strain reactive) she tells me I have Lyme but there is nothing to do for it.
Since then Ive read some blogs on people that have done extended periods of i.v./ oral antibiotics... I haven't read any that says they've been "cured" but they seem to have fewer flares and longer periods between. I'm currently looking for an infectious disease specialist that will do this protocol on me. It calls for I.v. antibiotics for a few months then a regimine of rotating oral antibiotics (though there is no timeframe for this part of treatment, most people have been taking them for quite a few yrs now)
Just to clarify-
I am epstein-barr positive
Elisa test pos. for lyme
Hashimotos Hypothyroid
I am able to go to the gym most of the time and have a very high pain tolerance and I do work (though I am only getting around 5 hrs a week due to economy- so I spend my free time at the gym) I have a wonderful friend and now my personal trainer (Jess) and an inspirational woman that pushes everyone to be their best in the multitude of classes she teaches, and I take (G. ) and I honestly contribute most of the health I have left to them. I can't imagine where I would be had I not met Jess and she not persuaded to join the gym and then subsequently meeting G. I know I would not feel nearly as good, would definetly be much heavier, and wouldn't have an outlet for getting rid of the frustrations I deal with.
The only medicine I am routinely taking is my thyroid medicine and a nutriceutical I believe is helping immensely.
My then-doctor, ran a blood panel and all that came back was epstein-barr positive and she concluded I "must" be getting over a mono. infection and for me to lose wieght. We assumed I had gained due to no longer being in high school marching band and starting college (im around 19 at this specific point in time 2006)
So a few months go by, I got a little better, then got a little worse... One thing that stands out it I had a major migraine episode while at work that turned into my mom having to come pick me up and being stuck in bed with flu-like symptoms again for around a week.
Again, Doc does nothing except test for lupus and rheumatoid arthritis which both come back negative ( actually the ANA for RA came back borderline, then normal).
More time goes by, more visits (averaging about 1 every 2-3months, which for me was A LOT as Id never really been sick) Somewhere in all this time however, we did re-discover that I have hashimotos hypothyroidism which is now regulated, Ive been hypothyroid since 14 yrs old but went off meds for awhile due to a quack doctor.
On to a new doctor in 2010 and after 2-3 visits to her (one of which was for the most excruciating shoulder pain in my life!) she tests for lyme- elisa is positive western blot igg negative (though 2 strains were reactive) and igm negative (1 strain reactive) she tells me I have Lyme but there is nothing to do for it.
Since then Ive read some blogs on people that have done extended periods of i.v./ oral antibiotics... I haven't read any that says they've been "cured" but they seem to have fewer flares and longer periods between. I'm currently looking for an infectious disease specialist that will do this protocol on me. It calls for I.v. antibiotics for a few months then a regimine of rotating oral antibiotics (though there is no timeframe for this part of treatment, most people have been taking them for quite a few yrs now)
Just to clarify-
I am epstein-barr positive
Elisa test pos. for lyme
Hashimotos Hypothyroid
I am able to go to the gym most of the time and have a very high pain tolerance and I do work (though I am only getting around 5 hrs a week due to economy- so I spend my free time at the gym) I have a wonderful friend and now my personal trainer (Jess) and an inspirational woman that pushes everyone to be their best in the multitude of classes she teaches, and I take (G. ) and I honestly contribute most of the health I have left to them. I can't imagine where I would be had I not met Jess and she not persuaded to join the gym and then subsequently meeting G. I know I would not feel nearly as good, would definetly be much heavier, and wouldn't have an outlet for getting rid of the frustrations I deal with.
The only medicine I am routinely taking is my thyroid medicine and a nutriceutical I believe is helping immensely.
First blog!
So, in this first blog let me tell you a little about myself. I have Lyme disease, Hashimotos hypothyroidism, epstein-barr virus and somehow in this mixture of things I've scarred the bottom lobes of my lungs up causing a few bouts of pneumonia (lyme spirochetes? but I get ahead of myself...) and was in an accident May '09 that herniated the disc in my thoracic spine.
Lucky aren't I?
On to other areas of my life besides medical- I am a veterinary technician ( just a few classes away from being able to be certified- as a technician, not insane : ) I've always wanted to be around animals. My first dog was a cocker named Angel who gave birth to my next 2 dogs Scooby and Butch but, alas, Angel was hit by a car, Scooby ran away, and we moved so Butch found a new family.
Now I have Daizey my 16 yr old chow mix and who I consider my furry sister (not to be confused with my less furry, human sister DeLayna) Daizey is your typical old dog, severe arthritis that makes getting up/down difficult and some heart and lungs problems but she's still bright eyed, loves her food, and occasionally rols onto her back and wiggles.
Tinker is my very neurotic bichon that I rescued from the first animal clinic I worked in, she was found wrapped up in a farmers fence. We guess the barb wire got stuck to her mats and she panicked. Since having her we've learned about seperation anxiety, how to fix french doors when she's tried to chew through them, and taught her to walk on a leash (she had a severe fear of anything aound her neck) She's pretty much DeLaynas dog and tries to be touching her at any given time.
Pandora is the newest child. She is around 1-2 yrs old, a shih-tzu, and paralyzed from her hips down. She was found as a stray, already paralyzed for some time and was on her way to animal services. Well, I know Daizey is on her way out of this world and so Pandora has come home to be the bridge for our family and Tinker for when the time comes that Daizey is no longer here. Pandora is the sweetest, funniest little mop I've ever had the pleasure of meeting.
So, wrapping this up, I'm hoping this blog will be therapeutic for me. With my medical issues (which I will go into in the next blog) coming to a head and trying to find a doctor to treat me, with Daizey not doing so well, and just my life in general... I hope to either help someone else out who may be in the same boat or at the very least help myself out by writing and getting it off my chest.
Be safe!
Lucky aren't I?
On to other areas of my life besides medical- I am a veterinary technician ( just a few classes away from being able to be certified- as a technician, not insane : ) I've always wanted to be around animals. My first dog was a cocker named Angel who gave birth to my next 2 dogs Scooby and Butch but, alas, Angel was hit by a car, Scooby ran away, and we moved so Butch found a new family.
Now I have Daizey my 16 yr old chow mix and who I consider my furry sister (not to be confused with my less furry, human sister DeLayna) Daizey is your typical old dog, severe arthritis that makes getting up/down difficult and some heart and lungs problems but she's still bright eyed, loves her food, and occasionally rols onto her back and wiggles.
Tinker is my very neurotic bichon that I rescued from the first animal clinic I worked in, she was found wrapped up in a farmers fence. We guess the barb wire got stuck to her mats and she panicked. Since having her we've learned about seperation anxiety, how to fix french doors when she's tried to chew through them, and taught her to walk on a leash (she had a severe fear of anything aound her neck) She's pretty much DeLaynas dog and tries to be touching her at any given time.
Pandora is the newest child. She is around 1-2 yrs old, a shih-tzu, and paralyzed from her hips down. She was found as a stray, already paralyzed for some time and was on her way to animal services. Well, I know Daizey is on her way out of this world and so Pandora has come home to be the bridge for our family and Tinker for when the time comes that Daizey is no longer here. Pandora is the sweetest, funniest little mop I've ever had the pleasure of meeting.
So, wrapping this up, I'm hoping this blog will be therapeutic for me. With my medical issues (which I will go into in the next blog) coming to a head and trying to find a doctor to treat me, with Daizey not doing so well, and just my life in general... I hope to either help someone else out who may be in the same boat or at the very least help myself out by writing and getting it off my chest.
Be safe!
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