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Exercise Intolerance + CF and signs of Lyme
Since the end of May (it is now end of Oct as of this writing) I have gradually slid into illness and am working with doctors but have gotten nowhere in diagnosing an issue as I wait weeks for an available appointment with the next specialist. I am getting desperate.
The main symptom I have is chronic fatigue, especially as it comes to exercise. I can walk and do the basic things in life, I can even sprint a few paces after my young son, but as soon as I go to run for exercise, my body is as if it shuts down. I Googled around to see that it is Exercise Intolerance. I have a few bad moments during the day, especially in the morning and again in the evening, where I yawn uncontrollably, have headaches, back and sometimes muscle aches and feel hung over (even though I did not drink alcohol), and feel nausea and dizzy, and sometimes mildly with foggy brain. It has gradually gotten worse, noticeable, say, ever second week.
I have been working with my PCP doctor. We did all the usual blood and urine tests (roughly 50-75 in total) to "rule out" kidney, liver, Lyme (tests three separate times over last 5 months) and so much more. All levels check perfect. The only level that we are keeping an eye on is Vitamin D, which is only slightly elevated but still in healthy range. (I did spend a lot of time outside over the last few weeks, and I do consume Vitamin D in food and vitamin, so this might be just a function of that.)
I am getting frustrated at the glacial pace of my treatment. Because I am not an emergency case, I need to wait until the next specialist after the previous found nothing. I have been to my regular doctor several times, the Endocrinologist twice, and next up is Rheumatologist. I suspect I'll continue to be bounced around.
I'm not sure what to do. Of course I am waiting for the next appointment, but I am ill and getting worse and no longer wan to wait. I am hoping somebody reads this and has an idea.
More information:
I am a long time runner who has 25 consistent years of running along with many marathons. I had a normal year, where I logged two marathons this year, the last being in May, and now I cannot even run a mile. It's as if my lungs do not process oxygen to the muscles. I just cannot feel comfortable no matter how slow I go. I am unable to get my heart rate up. What's strange about this is that I can do physical activities. In the last few months, I built a patio. I did okay even though I struggled through some symptoms. My legs feel heavy, as if congested, but there is no noticeable swelling. This came on gradually, and to be honest I think I noticed this on and off, albeit very mildly, over the last three years.
Speaking of which, three years ago I came down with Lyme Disease. I caught it right away, as it knocked me into my bed with deathly symptoms. I was on medication before the bullseye came. But the disease ran rough. Many of the symptoms I have now mirror those then, though I realize many conditions do. I have to be fair and say that since then I always think about Lyme and if I am still being impacted by it, as every once in a while something in the body reminds me of it symptom wise. Recently I was tested three times, and each time it came back negative. Is it possible to have Lyme but test negative? I was told I had tests that would look for Lyme in the blood AND another test to check for markers to indicate Lyme had been there. And both are negative each time.
The main symptom I have is chronic fatigue, especially as it comes to exercise. I can walk and do the basic things in life, I can even sprint a few paces after my young son, but as soon as I go to run for exercise, my body is as if it shuts down. I Googled around to see that it is Exercise Intolerance. I have a few bad moments during the day, especially in the morning and again in the evening, where I yawn uncontrollably, have headaches, back and sometimes muscle aches and feel hung over (even though I did not drink alcohol), and feel nausea and dizzy, and sometimes mildly with foggy brain. It has gradually gotten worse, noticeable, say, ever second week.
I have been working with my PCP doctor. We did all the usual blood and urine tests (roughly 50-75 in total) to "rule out" kidney, liver, Lyme (tests three separate times over last 5 months) and so much more. All levels check perfect. The only level that we are keeping an eye on is Vitamin D, which is only slightly elevated but still in healthy range. (I did spend a lot of time outside over the last few weeks, and I do consume Vitamin D in food and vitamin, so this might be just a function of that.)
I am getting frustrated at the glacial pace of my treatment. Because I am not an emergency case, I need to wait until the next specialist after the previous found nothing. I have been to my regular doctor several times, the Endocrinologist twice, and next up is Rheumatologist. I suspect I'll continue to be bounced around.
I'm not sure what to do. Of course I am waiting for the next appointment, but I am ill and getting worse and no longer wan to wait. I am hoping somebody reads this and has an idea.
More information:
I am a long time runner who has 25 consistent years of running along with many marathons. I had a normal year, where I logged two marathons this year, the last being in May, and now I cannot even run a mile. It's as if my lungs do not process oxygen to the muscles. I just cannot feel comfortable no matter how slow I go. I am unable to get my heart rate up. What's strange about this is that I can do physical activities. In the last few months, I built a patio. I did okay even though I struggled through some symptoms. My legs feel heavy, as if congested, but there is no noticeable swelling. This came on gradually, and to be honest I think I noticed this on and off, albeit very mildly, over the last three years.
Speaking of which, three years ago I came down with Lyme Disease. I caught it right away, as it knocked me into my bed with deathly symptoms. I was on medication before the bullseye came. But the disease ran rough. Many of the symptoms I have now mirror those then, though I realize many conditions do. I have to be fair and say that since then I always think about Lyme and if I am still being impacted by it, as every once in a while something in the body reminds me of it symptom wise. Recently I was tested three times, and each time it came back negative. Is it possible to have Lyme but test negative? I was told I had tests that would look for Lyme in the blood AND another test to check for markers to indicate Lyme had been there. And both are negative each time.
Ah ha. No links. Thanks.
Vitamin D, 25 Hydroxy is 76 with a healthy range of 20-60 ng/mL. One doctor has said a few times that this is a level we need to keep track of, and now after Googling around I understand some of the reasons why. Of roughly 75 other levels, this is the only one that is out of range of healthy. It wasn't alarmingly high, as the doctor said, but was something we should keep an eye on as it might shed light.
Vitamin D resistance? I don't know if this was thought of or checked. My Cortisol tested 17 of 5 - 25 ug/dL in the morning, which is normal. My cholesterol is good, and I am not at all obese (long distance runner for many, many years).
Current treatment is... nothing. Not a thing because everything to this point has tested negative.
Also, a big thank you to circling back here with more thoughts. I appreciate it. I am seeing a Rheumatologist next week and will ask about Lyme and the co-infections and mention much of what I spoke about here. At this point I am getting desperate, so if the next appointment yields no action, nothing positive, or no seeming direction as opposed to just being passed to the next specialist, I plan to contact separately through another hospital a LLMD. I live in the Boston area where we have decent hospitals, and thanks to you I have found some doctors I can make appointments with if my current course doesn't move me forward. I am just fearful that if this is a Lyme manifestation, even a stray variant, that time is money here in terms of my long term health.
Vitamin D, 25 Hydroxy is 76 with a healthy range of 20-60 ng/mL. One doctor has said a few times that this is a level we need to keep track of, and now after Googling around I understand some of the reasons why. Of roughly 75 other levels, this is the only one that is out of range of healthy. It wasn't alarmingly high, as the doctor said, but was something we should keep an eye on as it might shed light.
Vitamin D resistance? I don't know if this was thought of or checked. My Cortisol tested 17 of 5 - 25 ug/dL in the morning, which is normal. My cholesterol is good, and I am not at all obese (long distance runner for many, many years).
Current treatment is... nothing. Not a thing because everything to this point has tested negative.
Also, a big thank you to circling back here with more thoughts. I appreciate it. I am seeing a Rheumatologist next week and will ask about Lyme and the co-infections and mention much of what I spoke about here. At this point I am getting desperate, so if the next appointment yields no action, nothing positive, or no seeming direction as opposed to just being passed to the next specialist, I plan to contact separately through another hospital a LLMD. I live in the Boston area where we have decent hospitals, and thanks to you I have found some doctors I can make appointments with if my current course doesn't move me forward. I am just fearful that if this is a Lyme manifestation, even a stray variant, that time is money here in terms of my long term health.
Hey Run365, don't mention it.
Could you post your D levels?
Have you considered the possibility of Vitamin D resistance?
The usual causes are:
High cortisol, obesity, low cholesterol and vitamin D receptor polymorphism.
You also did not mention your current treatment, unless I missed it.
BTW, I do not post links to websites, as it is against forum rules.
I got kicked out of 2 other health forums because of this ;(
Medhelp is more usually lenient and sometimes lets the robo-sensors just block out the links or "illegal" text (but not always)
Cheers.
Niko
Could you post your D levels?
Have you considered the possibility of Vitamin D resistance?
The usual causes are:
High cortisol, obesity, low cholesterol and vitamin D receptor polymorphism.
You also did not mention your current treatment, unless I missed it.
BTW, I do not post links to websites, as it is against forum rules.
I got kicked out of 2 other health forums because of this ;(
Medhelp is more usually lenient and sometimes lets the robo-sensors just block out the links or "illegal" text (but not always)
Cheers.
Niko
In case others are interested, the chart is here:
"Comparison Chart of Lyme Disease and Co-infections Symptoms"
http://www.lyme-symptoms.com/LymeCoinfectionChart.html
"Comparison Chart of Lyme Disease and Co-infections Symptoms"
http://www.lyme-symptoms.com/LymeCoinfectionChart.html
Thank you so much for taking time to read and comment. I will absolutely search around on the terms you mention. I think you could very well be right. Also, I will continue my current path of treatment but also start pursuing this in parallel. I'll post here with some of my findings and steps.
Oh, I forgot to mention that you can get a
"Comparison Chart of Lyme Disease and Co-infections Symptoms", if you search under this.
It is a great resource, packed with tons of information on all of the co-infections and differential diagnoses under one site.
"Comparison Chart of Lyme Disease and Co-infections Symptoms", if you search under this.
It is a great resource, packed with tons of information on all of the co-infections and differential diagnoses under one site.
It sounds like you have some unfinished business with one of Lymes Co-Infections.
Borellia is rarely alone w/o any... company.
Unfortunately, most tests will reveal very little as these pathogens are the...Houdinis of infectious organisms, evading detection, by both the immune system and blood tests, since they hide deep in the tissues.
The Pathogenic Mycoplasma species in particular are notorious for this; they envelope themselves in cellular membrane, disguised as normal cells !!!
You may be unsymptomatic for a while, as these invaders
remain inactive, or experience gradually increasing symptoms, as their activation and their growth takes place at a rather slow rate.
You may search here in MedHelp under Dr. Garth Nicolson,
an expert in this field and also a part-time contributing Doctor in this forum.
My opinion is to seek an LLMD and get a complete Lyme and Co-infections Panel through IGeneX Labs.
This is only my opinion and is not intended as replacement
for medical advice.
Best wishes.
Niko
Borellia is rarely alone w/o any... company.
Unfortunately, most tests will reveal very little as these pathogens are the...Houdinis of infectious organisms, evading detection, by both the immune system and blood tests, since they hide deep in the tissues.
The Pathogenic Mycoplasma species in particular are notorious for this; they envelope themselves in cellular membrane, disguised as normal cells !!!
You may be unsymptomatic for a while, as these invaders
remain inactive, or experience gradually increasing symptoms, as their activation and their growth takes place at a rather slow rate.
You may search here in MedHelp under Dr. Garth Nicolson,
an expert in this field and also a part-time contributing Doctor in this forum.
My opinion is to seek an LLMD and get a complete Lyme and Co-infections Panel through IGeneX Labs.
This is only my opinion and is not intended as replacement
for medical advice.
Best wishes.
Niko
Should also add:
o Very dull and manageable headache at most times during the day
o Weight remains the same
o Tests for adrenal, rheumatoid factor, thyroid -- all good -- plus liver and kidney, good
o Strength in muscles good, like lifting weights or objects, but the muscles do feel more fatigued than normal -- I notice this either in the gym (trying to) lift weights and holding my daugther (muscles fatigue quicker).
o Blood pressure and pulse same
o Some joint stiffness in knuckles of both hands after lifting things and in knees noticeable on full bend.
o I can walk briskly but cannot run.
o Very dull and manageable headache at most times during the day
o Weight remains the same
o Tests for adrenal, rheumatoid factor, thyroid -- all good -- plus liver and kidney, good
o Strength in muscles good, like lifting weights or objects, but the muscles do feel more fatigued than normal -- I notice this either in the gym (trying to) lift weights and holding my daugther (muscles fatigue quicker).
o Blood pressure and pulse same
o Some joint stiffness in knuckles of both hands after lifting things and in knees noticeable on full bend.
o I can walk briskly but cannot run.
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