posted
[[Please scroll down for an easier to read version of this post! ]] Hello everyone! I've been an active reader of this forum for a while now, but haven't posted. I need some advice though, so please hang in there through this long post. I began treatment for Lyme in 2010 after years of fatigue, weakness, and behavioral problems (a lot of it was shrugged off as depression and being tired from figure skating, something I had done from the age of four). I was unable to care for myself properly and was brought home. After going to a doctor who did some testing, it was found out I had lyme disease. I was put on doxy- that didn't work. A longer dose didn't help, neither did another medicine. So it was suggested I see a specialist. I began seeing a NP who specialized in the treatment of Lyme and coinfections. That same summer I was hospitalized for major depression. My depression became a little better with some work of my own, and through treatment. I was treated for erlichia (not a bad case, cleared up quick), mycoplasma (cleared up relatively fast as well), bartonella, babesia, and lyme. The last three stuck with me for years. I had a PICC line once with that NP, as well as a variety of antibiotics and homeopathic treatments. After a while, we became a little uncomfortable with the treatments (garlic up the butt was what did it) and my parents felt I was doing well enough to stop treatment. After some talking with my therapist, who also had lyme (she improved so much throughout the time I saw her), she recommended a doctor upstate (I used to live in RI) who I began seeing. After being treated through her for a little while, my family decided to move. I stayed in NE and moved to NH with my boyfriend at the time and continued treatments. I became a little irregular about taking my medicine. I also found a tick on my arm in the summer of 2012. My NP prescribed an intramuscular shot of Bicillin LA, which she showed me how to give myself. Apparently, I gave it to myself too low, right in front of her (which she told me), but caused me a great deal of pain the next week, to the point that I needed crutches. I did not return to see her after her attitude regarding how I felt after the shot ("Well...if you feel that bad, maybe you should go to the ER." The way she said it was too bland, as if she didn't care). While I was seeing her, I also had another PICC line, and two SPECT scans (one a year) that showed increasing amounts of inflammation of the brain. I moved about a month later to pursue school where my parents live, in Greenville, NC. I recently went to a GP, who told me perhaps my symptoms were from depression. I'm worried if my titer comes back negative, she won't treat me appropriately. Or maybe I don't even have lyme anymore! I'm so confused and upset about feeling awful all the time, and it's interfering with my work, school, and relationship with my current boyfriend. My symptoms were not that bad, but over the past nine months, have gotten worse. In the past two months, on a daily basis, I experience: numbness in my arms, legs, feet and hands (sometimes all at once, usually in both arms or both legs, or in patches of my arms or legs) tingling, sort of pins and needles-ish chills my face has started to tingle at times, especially when I go from inside to the heat of the outside- my face tingles and feels so numb even when I touch it when this happens, that I've begun to worry extreme fatigue - if I can sleep, I'll sleep, even if it's all day. I wake up a lot at night sometimes, early morning mostly, but I'm always so tired muscle weakness - again, this is every day. muscle aches, pains, and spasms joint pain and swelling (swelling isn't as noticeable visually as it is a feeling- it's like a compression) I have a variety of cognitive issues like concentration, memory problems (I usually am unable to remember my mornings without a great deal of thinking), brain fog, word block, problems continuing conversation or staying "present" in them, and losing my train of thought. I overall feel very numb, drained, and tired. I get dizzy even when I'm laying down, like I'm still moving but I'm not. I get headaches quite a lot, and pain in my head. I find my coordination to be awful sometimes, and recently using my hands has started to become interesting. They feel numb, like they're too cold, and feel weird.
Thank you for reading all of this, I just don't know what to do. Should I try seeing a rheumatologist or another specialist, like a neurologist? I'm scared that I don't have lyme anymore and I have something else, but I'm also scared that I do have lyme and won't be able to receive appropriate treatment because of any test results and my inability to properly communicate my daily experiences (something I feel I was unable to do that day). What should I do, what does this sound like to all of you? Thank you again for reading!
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi lymiecat, I broke-up your post for you, a lot of people with lyme have vision problems and can't read it that way.
Hello everyone! I've been an active reader of this forum for a while now, but haven't posted. I need some advice though, so please hang in there through this long post.
I began treatment for Lyme in 2010 after years of fatigue, weakness, and behavioral problems (a lot of it was shrugged off as depression and being tired from figure skating, something I had done from the age of four). I was unable to care for myself properly and was brought home. After going to a doctor who did some testing, it was found out I had lyme disease.
I was put on doxy- that didn't work. A longer dose didn't help, neither did another medicine. So it was suggested I see a specialist.
I began seeing a NP who specialized in the treatment of Lyme and coinfections. That same summer I was hospitalized for major depression. My depression became a little better with some work of my own, and through treatment.
I was treated for erlichia (not a bad case, cleared up quick), mycoplasma (cleared up relatively fast as well), bartonella, babesia, and lyme. The last three stuck with me for years. I had a PICC line once with that NP, as well as a variety of antibiotics and homeopathic treatments.
After a while, we became a little uncomfortable with the treatments (garlic up the butt was what did it) and my parents felt I was doing well enough to stop treatment.
After some talking with my therapist, who also had lyme (she improved so much throughout the time I saw her), she recommended a doctor upstate (I used to live in RI) who I began seeing.
After being treated through her for a little while, my family decided to move. I stayed in NE and moved to NH with my boyfriend at the time and continued treatments. I became a little irregular about taking my medicine.
I also found a tick on my arm in the summer of 2012. My NP prescribed an intramuscular shot of Bicillin LA, which she showed me how to give myself. Apparently, I gave it to myself too low, right in front of her (which she told me), but caused me a great deal of pain the next week, to the point that I needed crutches.
I did not return to see her after her attitude regarding how I felt after the shot ("Well...if you feel that bad, maybe you should go to the ER." The way she said it was too bland, as if she didn't care).
While I was seeing her, I also had another PICC line, and two SPECT scans (one a year) that showed increasing amounts of inflammation of the brain. I moved about a month later to pursue school where my parents live, in Greenville, NC.
I recently went to a GP, who told me perhaps my symptoms were from depression. I'm worried if my titer comes back negative, she won't treat me appropriately. Or maybe I don't even have lyme anymore! I'm so confused and upset about feeling awful all the time, and it's interfering with my work, school, and relationship with my current boyfriend.
My symptoms were not that bad, but over the past nine months, have gotten worse. In the past two months, on a daily basis, I experience: numbness in my arms, legs, feet and hands (sometimes all at once, usually in both arms or both legs, or in patches of my arms or legs)
tingling, sort of pins and needles-ish chills my face has started to tingle at times, especially when I go from inside to the heat of the outside- my face tingles and feels so numb even when I touch it when this happens, that I've begun to worry extreme fatigue - if I can sleep, I'll sleep, even if it's all day.
I wake up a lot at night sometimes, early morning mostly, but I'm always so tired muscle weakness - again, this is every day. muscle aches, pains, and spasms joint pain and swelling (swelling isn't as noticeable visually as it is a feeling- it's like a compression)
I have a variety of cognitive issues like concentration, memory problems (I usually am unable to remember my mornings without a great deal of thinking), brain fog, word block, problems continuing conversation or staying "present" in them, and losing my train of thought.
I overall feel very numb, drained, and tired. I get dizzy even when I'm laying down, like I'm still moving but I'm not. I get headaches quite a lot, and pain in my head. I find my coordination to be awful sometimes, and recently using my hands has started to become interesting. They feel numb, like they're too cold, and feel weird.
Thank you for reading all of this, I just don't know what to do. Should I try seeing a rheumatologist or another specialist, like a neurologist? I'm scared that I don't have lyme anymore and I have something else, but I'm also scared that I do have lyme and won't be able to receive appropriate treatment because of any test results and my inability to properly communicate my daily experiences (something I feel I was unable to do that day).
What should I do, what does this sound like to all of you? Thank you again for reading!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It sounds like lyme and co's to me. I would start with finding a LLMD (post over in seeking a doctor).
posted
Thank you! Yes, I've read bits of it, just never the whole thing. I feel like I'm back to square one again with treatment and in feeling, it's upsetting. Thank you for the input and breaking up my post for me!
Posts: 10 | From Winterville, NC | Registered: Sep 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It sounds like lyme and company, so I would nix the rheum and neuro docs (clueless about lyme) and go straight for an ILADS doc--they are cutting edge when it comes to lyme and company. www.lymediseaseassociation.org
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I'm looking around at my options (my finances are very tight), but hopefully I can start seeing someone before the end of the year. Unfortunately, my lyme titer came back negative so there's probably no chance of convincing this doctor otherwise. I may try and see someone else that my friend highly recommends as a really good listener and see if that will help in the meantime.
Posts: 10 | From Winterville, NC | Registered: Sep 2013
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posted
I'm going to ask to be- babesia was something I never kicked and the symptoms seem more of a match than with lyme.
I was reviewing my labs and am a little concerned- my GFR is high, at 132. I did some reading and came up with some scary things about chronic kidney disease.
Has anybody else ever had a problem like that? All the concerning factors attached are fine (nothing suspicious in my urine), but my red blood cell count is low, as is my hematocrit.
Posts: 10 | From Winterville, NC | Registered: Sep 2013
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posted
Good to know. I did some more reading and my labs seem to match an infection (like babesia or bartonella). Thanks for the input.
Posts: 10 | From Winterville, NC | Registered: Sep 2013
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