Aa
A Limbolanders poem
I am normally a happy and energetic person. Cup half full type of gal. I have been battling some health issues for a while now. I am hoping for answers regarding Lyme this week after having more tests done. In the meantime I decided to write about some feelings in a poem. (With a little inspiration) It may seem like I am in a dark place and yes I do struggle sometimes, but I was raised to be strong and I always will be. Life can get a person feeling down at times but I always come out on top. :) Luv ya!
What can be done about this affliction of mine
I feel like a failure, racked with pain all the time
Thoughts are all fuzzy like a fog rolling in
Trouble finding the right words and forgetting most things
My body is weak, tremors seen most in my hands
I wobble and struggle sometimes just to stand
Muscles will cramp and twitch, a crazy overload
Like my system is sending out an SOS in Morse code
My friends and my family give love and support
Yet I feel so alone, a constant ache in my heart
Just because you see a smile it doesn’t mean that all is well
It just means I’ve found a happy moment in this dimly lit cell
If you ask how I’m doing I will tell you “just fine”
But I have fears, I do worry, and in private I do cry
I felt like a winner at this life and its games
Now I battle a foe with no face and no name
If you could live in my skin you’d learn to understand
That it’s not in my head nor was it planned.
It’s just something that happened, a totally random affair.
I am trying my hardest to deal with it, OF THIS I DO SWEAR…….
What can be done about this affliction of mine
I feel like a failure, racked with pain all the time
Thoughts are all fuzzy like a fog rolling in
Trouble finding the right words and forgetting most things
My body is weak, tremors seen most in my hands
I wobble and struggle sometimes just to stand
Muscles will cramp and twitch, a crazy overload
Like my system is sending out an SOS in Morse code
My friends and my family give love and support
Yet I feel so alone, a constant ache in my heart
Just because you see a smile it doesn’t mean that all is well
It just means I’ve found a happy moment in this dimly lit cell
If you ask how I’m doing I will tell you “just fine”
But I have fears, I do worry, and in private I do cry
I felt like a winner at this life and its games
Now I battle a foe with no face and no name
If you could live in my skin you’d learn to understand
That it’s not in my head nor was it planned.
It’s just something that happened, a totally random affair.
I am trying my hardest to deal with it, OF THIS I DO SWEAR…….
Question for you:
You say above: "For [an antibiotic challenge test], they give a month of antibiotics, then a month off. Then redo the Western Blot. ... [I]n some people, the initial abx starts killing off spirochetes, triggering an immune response. ..."
Which meds are used for the challenge test? You've noted elsewhere that the bacteria leave the blood stream for intracellular hidey-holes, and so the antibodies trail off. You comment above indicates that cyst-busting meds like Flagyl would need to be given to reach the concealed bacteria, yes?
How does this fit with your earlier comments that the Lyme bacteria hide intracellularly, which I would take to be different from the slimy cysts they create for themselves? My previous readings have led me to think it is the slimy cyst arrangement that is the issue in testing. This does not rule out the intracellular concept, but cysts do not sound like the same thing as intracellular location. --???
You say above: "For [an antibiotic challenge test], they give a month of antibiotics, then a month off. Then redo the Western Blot. ... [I]n some people, the initial abx starts killing off spirochetes, triggering an immune response. ..."
Which meds are used for the challenge test? You've noted elsewhere that the bacteria leave the blood stream for intracellular hidey-holes, and so the antibodies trail off. You comment above indicates that cyst-busting meds like Flagyl would need to be given to reach the concealed bacteria, yes?
How does this fit with your earlier comments that the Lyme bacteria hide intracellularly, which I would take to be different from the slimy cysts they create for themselves? My previous readings have led me to think it is the slimy cyst arrangement that is the issue in testing. This does not rule out the intracellular concept, but cysts do not sound like the same thing as intracellular location. --???
I tested negative on a blood test and a cerebral spinal fluid test. When I finally got tested at IGeneX, I was CDC negative with only 1 band, but I showed positive on another Borrelia specific band that's not included in the IgM Western blot criteria and would not have been shown by most other labs. IGeneX and my LLMD says it shows I have Lyme.
I was so confident I had Lyme, that if I had not shown any antibodies for Borrelia, they would have done an antibiotic challenge test. For this, they give a month of antibiotics, then a month off. Then redo the Western Blot. It doesn't work in all cases, but in some people, the initial abx starts killing off spirochetes, triggering an immune response. Hopefully enough to show on a test. LLMDs don't usually do this unless they have eliminated other possibilities for the symptoms.
According to the IDSA and CDC, my IgM doesn't matter as I was sick more than a month and my IgG showed only 1 band (need 5 for CDC surveillance). CDC website says its "highly unlikely" that I have Lyme. It's obvious to me, though, as all my symptoms are consistent with Lyme, all alternatives have been eliminated, and I am getting better with antibiotics.
For lack of a good alternative, It might be worth it to get an IGeneX Lyme panel. Or if money isn't a problem, the new culture test from Advanced Laboratories, Inc. I think it's $595. If any of these were positive, you could be confident of the result.
One more thought... I don't remember your symptoms, but there is a toxic yeast condition that can cause some of the same symptoms as Lyme, esp. fatigue and brain fog. Jackie has described this. The LymeMD blogger has also mentioned it.
I was so confident I had Lyme, that if I had not shown any antibodies for Borrelia, they would have done an antibiotic challenge test. For this, they give a month of antibiotics, then a month off. Then redo the Western Blot. It doesn't work in all cases, but in some people, the initial abx starts killing off spirochetes, triggering an immune response. Hopefully enough to show on a test. LLMDs don't usually do this unless they have eliminated other possibilities for the symptoms.
According to the IDSA and CDC, my IgM doesn't matter as I was sick more than a month and my IgG showed only 1 band (need 5 for CDC surveillance). CDC website says its "highly unlikely" that I have Lyme. It's obvious to me, though, as all my symptoms are consistent with Lyme, all alternatives have been eliminated, and I am getting better with antibiotics.
For lack of a good alternative, It might be worth it to get an IGeneX Lyme panel. Or if money isn't a problem, the new culture test from Advanced Laboratories, Inc. I think it's $595. If any of these were positive, you could be confident of the result.
One more thought... I don't remember your symptoms, but there is a toxic yeast condition that can cause some of the same symptoms as Lyme, esp. fatigue and brain fog. Jackie has described this. The LymeMD blogger has also mentioned it.
I did not get copies while i was in there so I will call now and pick them up tomorrow. I will post the results on here to see if anyone has some advice.
She is my NL and seemed very sure that I would be positive for Lyme. She seemed to want to fight for it but after these last tests....just shut down like you said.
Thank you and I will keep you posted.
She is my NL and seemed very sure that I would be positive for Lyme. She seemed to want to fight for it but after these last tests....just shut down like you said.
Thank you and I will keep you posted.
Jen
I just did a really quick run through your earlier messages, and I'm not clear on what type of doc you saw and whether she's got 'progressive' views on Lyme.
Did you get copies of the test results? I believe by law you are entitled to them, and you should get and keep copies of them. If you want to post the specific test results here, we'd be glad to tell you what we would do.
Not all labs are created equal, and if your doc does not take the progressive view of Lyme, it would be normal for her to shut you down. I am not persuaded that she has the orientation that I would want in my own doc.
Please share this data with us, or send it by private message through this site if you don't want to post it publicly. There are many good docs who just dont' understand Lyme and how poor the tests are, esp. from some otherwise good labs.
Lyme will not just go away, and your health could degrade over time rather than stay at a tolerable level of misery.
I went through 20+ docs before I got a diagnosis, and it was by accident: the doc was a very nice, highly trained MD affiliated with a major medical center, and she had no clue what was wrong with me. In desperation she ran a standard Lyme test and it came back mildly positive (which happens when it's been a while since initial infection), but she said no, I didn't have Lyme, but she couldn't explain the positive result except that it wasn't positive ENOUGH. (Isn't that like being a little bit pregnant??)
I said 'thank you' and took the test result and found a Lyme specialist who properly diagnosed and treated me -- I am for a couple of years now my old impatient, cranky self again -- YAY!!!!!! It turns out I had babesiosis, which is similar to malaria, as well as Lyme. These things don't just go away without treatment.
Please share your data with us if you would --
I just did a really quick run through your earlier messages, and I'm not clear on what type of doc you saw and whether she's got 'progressive' views on Lyme.
Did you get copies of the test results? I believe by law you are entitled to them, and you should get and keep copies of them. If you want to post the specific test results here, we'd be glad to tell you what we would do.
Not all labs are created equal, and if your doc does not take the progressive view of Lyme, it would be normal for her to shut you down. I am not persuaded that she has the orientation that I would want in my own doc.
Please share this data with us, or send it by private message through this site if you don't want to post it publicly. There are many good docs who just dont' understand Lyme and how poor the tests are, esp. from some otherwise good labs.
Lyme will not just go away, and your health could degrade over time rather than stay at a tolerable level of misery.
I went through 20+ docs before I got a diagnosis, and it was by accident: the doc was a very nice, highly trained MD affiliated with a major medical center, and she had no clue what was wrong with me. In desperation she ran a standard Lyme test and it came back mildly positive (which happens when it's been a while since initial infection), but she said no, I didn't have Lyme, but she couldn't explain the positive result except that it wasn't positive ENOUGH. (Isn't that like being a little bit pregnant??)
I said 'thank you' and took the test result and found a Lyme specialist who properly diagnosed and treated me -- I am for a couple of years now my old impatient, cranky self again -- YAY!!!!!! It turns out I had babesiosis, which is similar to malaria, as well as Lyme. These things don't just go away without treatment.
Please share your data with us if you would --
I asked her about a false negative and if there were other tests and she said that for sure I am negative and there is no reason to test furthur.
Only because the tests were "so clearly negative" in her words
Only because the tests were "so clearly negative" in her words
What was the lab that the doc sent the blood work to?
Also, if you have been infected for some time, the standard Western blot and ELISA tests will often come back negative.
Did your doc mention some additional tests that can be done:
-- PCR testing through IGeneX labs in Palo Alto (they have a detailed website)
-- a newer test that others have mentioned here and can give more details on
Also, if you have been infected for some time, the standard Western blot and ELISA tests will often come back negative.
Did your doc mention some additional tests that can be done:
-- PCR testing through IGeneX labs in Palo Alto (they have a detailed website)
-- a newer test that others have mentioned here and can give more details on
Hello everyone. Glad to hear you are getting some help with all this.
Unfortunately I tested negative for western blot. My dr sent another set of blood work to a lab in new york and expected at least a couple bands that would be questionable but I was negative with all that too.
So my foe still has no name. Not sure where to go from here. Dr says on paper I am healthier than most but my neuro exam says something is wrong. She is as lost as I am.
Good luck to all. Maybe someday I will get answers too.
Jen
Unfortunately I tested negative for western blot. My dr sent another set of blood work to a lab in new york and expected at least a couple bands that would be questionable but I was negative with all that too.
So my foe still has no name. Not sure where to go from here. Dr says on paper I am healthier than most but my neuro exam says something is wrong. She is as lost as I am.
Good luck to all. Maybe someday I will get answers too.
Jen
I actually Did not have a hard time .
I did the first time when i lived in FL. , But once i moved up north its been very easy.
But also difficult because there is a very high chance that the doctor who is treating you knows Nothing about lyme .
Thats what happened to me
I did the first time when i lived in FL. , But once i moved up north its been very easy.
But also difficult because there is a very high chance that the doctor who is treating you knows Nothing about lyme .
Thats what happened to me
Thank You Both <3
I live in Connecticut .
If you Want to read my Full Story , it is posted on my profile <3 i appreaciate the welcoming .
I live in Connecticut .
If you Want to read my Full Story , it is posted on my profile <3 i appreaciate the welcoming .
Welcome... Now we have two Jackies!
I am so glad you have been diagnosed and are getting treatment. That is terrific! What state do you live in? Did you have a hard time finding a doctor to treat you? (Don't tell us his/her name...many treat Lyme patients quietly to avoid criticism for using long term antibiotics.)
I am so glad you have been diagnosed and are getting treatment. That is terrific! What state do you live in? Did you have a hard time finding a doctor to treat you? (Don't tell us his/her name...many treat Lyme patients quietly to avoid criticism for using long term antibiotics.)
Welcome! Sorry to hear all you are going through, but sounds like your doc is on top of the situation. Thanks for your post -- and all good wishes to you -- let us know how you do, okay?
Hi . my Name is Jackie !
I have had stage 3 lyme since i was 8 years Old .
Right now im turning 15 with a PICC Line in my Arm . Some symptoms i have are:
• hallucinating
• braing fog
• insomnia
• Chronic Migraine
• weakness
• Joint Pain
• many more symptoms
I have been showing signs of Neuropathy
And have been diagnosed with Lyme Arthritis Also . Lyme has changed my life . I went from being a normal teenager taking All honors classes
To being a teenager who cannot walk nor hold a pencil and write her name like she used to .
I hope you get answers .
And i hope you get treated properly .
I have had stage 3 lyme since i was 8 years Old .
Right now im turning 15 with a PICC Line in my Arm . Some symptoms i have are:
• hallucinating
• braing fog
• insomnia
• Chronic Migraine
• weakness
• Joint Pain
• many more symptoms
I have been showing signs of Neuropathy
And have been diagnosed with Lyme Arthritis Also . Lyme has changed my life . I went from being a normal teenager taking All honors classes
To being a teenager who cannot walk nor hold a pencil and write her name like she used to .
I hope you get answers .
And i hope you get treated properly .
Thank you for the comments.
JackieCalifornia......I hope to get a name and answers soon. Sometimes the worst part is not knowing for sure.
meggy1972... I know what you mean. I am not the person I used to be. I hope someday I will get some of that back. Cross my fingers. :)
Ricobord........believe me it took a while to do this and was probably a one time deal. LOL
JackieCalifornia......I hope to get a name and answers soon. Sometimes the worst part is not knowing for sure.
meggy1972... I know what you mean. I am not the person I used to be. I hope someday I will get some of that back. Cross my fingers. :)
Ricobord........believe me it took a while to do this and was probably a one time deal. LOL
Excellent poem! You can be encouraged that enough of your brain is still working that you can even write this! :)
I can relate to your well written poem. I turn fourty next month and my goal was to run a road race and be in great shape on my birthday, but I have not had the energy to run in months now. The people I love don't understand what I'm going through. Lyme is a very sad thing. Thank you for sharing.
Oh, I like this! Thank you for posting your poem.
You capture all the aspects and contradictions of Lyme ... well said.
You capture all the aspects and contradictions of Lyme ... well said.
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