I have an interesting abnormal blood test result that my doctor thinks is connected to my ME/CFS
- Thread starter Eobara
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It was perfectly normal a year ago, but I haven't gotten it checked more recently.
Wayne
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Hi @Eobara -- I don't really know quite honestly. My first thought was whether you might be able to do very simple weight repetitions of some sort. Like doing leg lifts or something. I do them daily, and have found they increase the strength (and likely bone density) in my legs without being unduly taxing. It all depends I guess on whether you're able to do even a slight amount of resistance work. It's a conundrum for sure!
wabi-sabi
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This is really a question for your doc.
Given ME/CFS there may not be a better long term solution. Or put another way, the long term solution is exercise which you can't do, so the second best solution (which you can do) is the medication.
Tammy
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Personally, I would never take the medicine they give for bone health. As an alternative, I would take Orgono G5 Silica, and Nettle.
wabi-sabi
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Here's another interesting article. Emphasis mine:
Bone mass increases progressively during childhood, but mainly during adolescence when approximately 40% of total bone mass is accumulated. Peak bone mass is reached in late adolescence, and is a well recognised risk factor for osteoporosis later in life. Thus, increasing peak bone mass can prevent osteoporosis. The critical interpretation of bone mass measurements is a crucial factor for the diagnosis of osteopenia/osteoporosis in children and adolescents. To date, there are insufficient data to formally define osteopenia/osteoporosis in this patient group, and the guidelines used for adult patients are not applicable. In males and females aged <20 years the terminology 'low bone density for chronologic age' may be used if the Z-score is less than -2. For children and adolescents, this terminology is more appropriate than osteopenia/osteoporosis. Moreover, the T-score should not be used in children and adolescents. Many disorders, by various mechanisms, may affect the acquisition of bone mass during childhood and adolescence. Indeed, the number of disorders that have been identified as affecting bone mass in this age group is increasing as a consequence of the wide use of bone mass measurements. The increased survival of children and adolescents with chronic diseases or malignancies, as well as the use of some treatment regimens has resulted in an increase in the incidence of reduced bone mass in this age group. Experience in treating the various disorders associated with osteoporosis in childhood is limited at present. The first approach to osteoporosis management in children and adolescents should be aimed at treating the underlying disease. The use of bisphosphonates in children and adolescents with osteoporosis is increasing and their positive effect in improving bone mineral density is encouraging. Osteoporosis prevention is a key factor and it should begin in childhood. Pediatricians should have a fundamental role in the prevention of osteoporosis, suggesting strategies to achieve an optimal peak bone mass.
Citation: Baroncelli, G. I., Bertelloni, S., Sodini, F., & Saggese, G. (2005). Osteoporosis in children and adolescents: etiology and management. Paediatric drugs, 7(5), 295–323. https://doi.org/10.2165/00148581-200507050-00003
Upshot: treat the underlying disease casing the osteoporosis if you can. (Of course, then you need to know what that is...) If you can't treat the underlying disease or if you can't treat it enough (like ME/CFS) the prevent that disease from causing more harm than it needs to with medication.
Bone mass increases progressively during childhood, but mainly during adolescence when approximately 40% of total bone mass is accumulated. Peak bone mass is reached in late adolescence, and is a well recognised risk factor for osteoporosis later in life. Thus, increasing peak bone mass can prevent osteoporosis. The critical interpretation of bone mass measurements is a crucial factor for the diagnosis of osteopenia/osteoporosis in children and adolescents. To date, there are insufficient data to formally define osteopenia/osteoporosis in this patient group, and the guidelines used for adult patients are not applicable. In males and females aged <20 years the terminology 'low bone density for chronologic age' may be used if the Z-score is less than -2. For children and adolescents, this terminology is more appropriate than osteopenia/osteoporosis. Moreover, the T-score should not be used in children and adolescents. Many disorders, by various mechanisms, may affect the acquisition of bone mass during childhood and adolescence. Indeed, the number of disorders that have been identified as affecting bone mass in this age group is increasing as a consequence of the wide use of bone mass measurements. The increased survival of children and adolescents with chronic diseases or malignancies, as well as the use of some treatment regimens has resulted in an increase in the incidence of reduced bone mass in this age group. Experience in treating the various disorders associated with osteoporosis in childhood is limited at present. The first approach to osteoporosis management in children and adolescents should be aimed at treating the underlying disease. The use of bisphosphonates in children and adolescents with osteoporosis is increasing and their positive effect in improving bone mineral density is encouraging. Osteoporosis prevention is a key factor and it should begin in childhood. Pediatricians should have a fundamental role in the prevention of osteoporosis, suggesting strategies to achieve an optimal peak bone mass.
Citation: Baroncelli, G. I., Bertelloni, S., Sodini, F., & Saggese, G. (2005). Osteoporosis in children and adolescents: etiology and management. Paediatric drugs, 7(5), 295–323. https://doi.org/10.2165/00148581-200507050-00003
Upshot: treat the underlying disease casing the osteoporosis if you can. (Of course, then you need to know what that is...) If you can't treat the underlying disease or if you can't treat it enough (like ME/CFS) the prevent that disease from causing more harm than it needs to with medication.
Wayne
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Hi @Tammy, @Eobara -- I've read that if you don't have enough silica in your body, no amount of the other nutrients that contribute to bone health can even be used. I regularly put diatamaceous earth powder in many of my meals and smoothies, as it's one of the richest sources of silica (and ultra cheap).
I also add taurine, which is essential for bone health. Rounding out my own approach to bone health, I also regularly consume organic bone broth. I make it the easy way by purchasing organic chicken necks, and then blend it all up in my VitaMix. Saves tons of time trying to cook bones for hours on the stove.
Interestingly, even though bone broth contains many nutrients that are so good for our bones, it doesn't have a lot of calcium. So I pulverize (again in my VitaMix) organic egg shells. Just one of those shells contains enough calcium for a day.
Since starting this regimen several years ago, I don't feel concerned about my bone health going forward. I think I've got all the major nutrients covered, and in a very assimilable form. -- I think this regimen also supports the three tiny bones in the inner ear, which I feel is a good preventative measure as our ears age.
Shanti1
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@Eobara I hope your doctor will order a bone scan for you, it seems that is the next best step before starting intervention with a medication. It might also be worth checking some bone turnover markers like DPD or NTX. These are elevated when there is high bond turnover, for example in bone break down, or remodeling.
Doctors also use them to monitor a therapy since they can give an idea as to if a therapy is working sooner than the two-year time frame it takes to see changes on a DEXA bone scan. The idea is you get them measured before starting the therapy and then every few months to see if bone turnover is slowing. They can also be useful if someone decides to address bone loss with nutritional measures instead of a medication since you wouldn't want to wait two years for a DEXA only to find out that the "natural" measures weren't strong enough.
Regarding bone nutrients, here is a meta-analysis on K2 for bone density/osteoporosis: https://pubmed.ncbi.nlm.nih.gov/36033779/ The effective dose is 45mg/day. Adding in trace minerals associated with bone health (magnesium, boron, manganese, silica), D3, and type I collagen may have additional benefit.
Another thought, this is from a blog by one the top parathyroid specialist in the US. The data is data collected from his own patient population. What it shows is that young people have higher calcium levels than middle-age/older adults, but this is often not accounted for by lab reference ranges. I am not sure how this translates into ionized calcium though.
https://www.parathyroid.com/Normal-Blood-Calcium-Levels.htm
Do you have symptoms of hypercalcemia? Fatigue of course is one of them, but what about the more specific ones: gastric upset, nausea/GERD, headache, constipation, bone pain, muscle weakness...
Wishing you the best and hoping you solve this mystery.
Doctors also use them to monitor a therapy since they can give an idea as to if a therapy is working sooner than the two-year time frame it takes to see changes on a DEXA bone scan. The idea is you get them measured before starting the therapy and then every few months to see if bone turnover is slowing. They can also be useful if someone decides to address bone loss with nutritional measures instead of a medication since you wouldn't want to wait two years for a DEXA only to find out that the "natural" measures weren't strong enough.
Regarding bone nutrients, here is a meta-analysis on K2 for bone density/osteoporosis: https://pubmed.ncbi.nlm.nih.gov/36033779/ The effective dose is 45mg/day. Adding in trace minerals associated with bone health (magnesium, boron, manganese, silica), D3, and type I collagen may have additional benefit.
Another thought, this is from a blog by one the top parathyroid specialist in the US. The data is data collected from his own patient population. What it shows is that young people have higher calcium levels than middle-age/older adults, but this is often not accounted for by lab reference ranges. I am not sure how this translates into ionized calcium though.
https://www.parathyroid.com/Normal-Blood-Calcium-Levels.htm
Do you have symptoms of hypercalcemia? Fatigue of course is one of them, but what about the more specific ones: gastric upset, nausea/GERD, headache, constipation, bone pain, muscle weakness...
Wishing you the best and hoping you solve this mystery.
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I actually just met with my endocrinologist today and she recommended I do the DEXA bone scan and NTX test next! She actually said there is a decent chance my condition is mild enough that I probably would be fine without a medicine, but the bone tests will confirm the treatment path. I do have a lot of those symptoms, but POTS or ME/CFS could easily explain that. My calcium is only mildly elevated so according to the endocrinologist it is unlikely that my hypercalcemia is causing any of my symptoms. She also confirmed that the only I and not other ME/CFS patients have hypercalcemia is because of my age and good fitness before getting sick.
Shanti1
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That's good news and I'm gald they will be doing the testing.
So true.
Let us know how everything goes.
just noted in the long list of potential causes
the proper name for "cat scratch fever" is Bartonellosis. ie infection with the bacteria from the genus bartonella.
i mention it here as i have finally found my CFS is caused by bartonella (via direct physical imaging of bartonella bacteria in the blood) and my CFS is now responding to treatment.
after being almost housebound for years - i can now walk 3miles at a fast clip each day and do 30minute workouts 3x a week
there used to be only 2 or 3 species of bartonella known - until the 1980's - but it is regarded as an emerging zoonotic disease with more species being found every year.
there are something like 30 species now and around half are known to be pathogenic in humans
the medical text books are hopelessly out of date and typically regard it as a brief febrile illness that results after a cat scratch or bite or flea bite.
however, there is ample evidence that it can and does become chronic in humans.
Fatigue, PEM, and various pain issues - including SFN are all common in this patient cohort,
this video is the best primer on bartonella - its by two of the leading researchers and clinicians in the world on the topic
the proper name for "cat scratch fever" is Bartonellosis. ie infection with the bacteria from the genus bartonella.
i mention it here as i have finally found my CFS is caused by bartonella (via direct physical imaging of bartonella bacteria in the blood) and my CFS is now responding to treatment.
after being almost housebound for years - i can now walk 3miles at a fast clip each day and do 30minute workouts 3x a week
there used to be only 2 or 3 species of bartonella known - until the 1980's - but it is regarded as an emerging zoonotic disease with more species being found every year.
there are something like 30 species now and around half are known to be pathogenic in humans
the medical text books are hopelessly out of date and typically regard it as a brief febrile illness that results after a cat scratch or bite or flea bite.
however, there is ample evidence that it can and does become chronic in humans.
Fatigue, PEM, and various pain issues - including SFN are all common in this patient cohort,
this video is the best primer on bartonella - its by two of the leading researchers and clinicians in the world on the topic
a couple of follow ups in case its of help
my microscopy slides showing rings of clear vacuoles inside red blood cells - no other organism known does this - so it is highly diagnostic
the other diagnostic clue if you do not have access to an appropriate microscopy lab - is a particular streaky rash ( known as bartonella "striae" ) that occurs in maybe 25% of patients
unfortunately, only a small fraction of patients develop this characteristic rash, but if you have this then its better than a positive test result.
the rash is often confused with stretch marks - but stretch marks are not red/purple
the risk of exposure in the human population is very high
the majority of domestic cats that go outdoors are infected with one or more bartonella species - and humans can get infected from cat scratches or bites ( even superficial ones) or from bites from cat fleas or dog fleas.
it can also be spread from its animal hosts ( farm animals, rodents, small mammals, cats, dogs etc ) by a host of other arthropod vectors - biting flies, ticks, lice, even spiders have been documented -
humans can also contract it directly from exposure to the faeces of infected pets or other animals.
pet owners and particularly farm workers and veterinarians are at high risk
my microscopy slides showing rings of clear vacuoles inside red blood cells - no other organism known does this - so it is highly diagnostic
the other diagnostic clue if you do not have access to an appropriate microscopy lab - is a particular streaky rash ( known as bartonella "striae" ) that occurs in maybe 25% of patients
unfortunately, only a small fraction of patients develop this characteristic rash, but if you have this then its better than a positive test result.
the rash is often confused with stretch marks - but stretch marks are not red/purple
the risk of exposure in the human population is very high
the majority of domestic cats that go outdoors are infected with one or more bartonella species - and humans can get infected from cat scratches or bites ( even superficial ones) or from bites from cat fleas or dog fleas.
it can also be spread from its animal hosts ( farm animals, rodents, small mammals, cats, dogs etc ) by a host of other arthropod vectors - biting flies, ticks, lice, even spiders have been documented -
humans can also contract it directly from exposure to the faeces of infected pets or other animals.
pet owners and particularly farm workers and veterinarians are at high risk
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I got my dexa scan results and it does not look good... My z-score is -2.2 which essentially means osteoporosis, though I guess the correct terminology is 'low bone density for chronologic age' as pointed out in the article @wabi-sabi showed. My calcium also continues to go up and up. At least the good news is that my endocrinologist was probably correct and the cause of my hypercalcemia is explained.
This is so frustrating, and I don't want to add in another medicine, though now it seems like I might. It is hard for me not to feel guilty. I feel like it is my fault because I am prioritizing rest over exercise, and now I have this serious consequence.
I wonder how many other people with ME/CFS have osteoporosis (and hypercalcemia) and they don't even know it...
I am still waiting on my NTX test result and for my endocrinologist to go over everything. I will keep everyone updated.
This is so frustrating, and I don't want to add in another medicine, though now it seems like I might. It is hard for me not to feel guilty. I feel like it is my fault because I am prioritizing rest over exercise, and now I have this serious consequence.
I wonder how many other people with ME/CFS have osteoporosis (and hypercalcemia) and they don't even know it...
I am still waiting on my NTX test result and for my endocrinologist to go over everything. I will keep everyone updated.
wabi-sabi
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This is definitely not your fault. The lack of bone density is because you have a serious disease, ME/CFS, (also not your fault) and there aren't many good treatments for that disease, ME/CFS (also not your fault). You are not alone here. Think of all the other disabled people who cannot exercise and have health repercussions from not being able to exercise. This is on medicine and doctors to find a way for us to get the benefits of exercise without the damage.
I sympathize with you not wanting another medication, but your bones do need to be protected. Medication is a good way to do that right now. When we finally get a cure (or even just a good treatment) for ME/CFS you want your skeleton to be ready to go! You are young enough that I think something good will happen in your lifetime.
If it's safe for you, you can also work with someone like the Workwell Foundation, that knows about exercising safely for ME/CFS patients. There may be something you can do for your bones while stuck in bed. If that's not a possibility for you, then medication keeps your bones safe in the meantime.
But it's really, definitely not your fault.
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Ok so my NTX was normal. I am very confused. I guess that means that I have had low bone density for a long time? I have only been sick with ME/CFS for two years.
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Hi-
i have recently been diagnosed with a variety of Tbd’s and I think that your slides, besides showing bartonella, also show Babesia. I have a Babesia book for Lab diagnosing and it appears to me that you may possibly have it also.
hi, thanks for your input
i know it looks a bit like babesia in some of those views ( top right images) - but its actually artefacts from the staining process
i was using the drip method rather than the dip method - and it tends to cause lots of small dark blue fragments of the stain to be left on the slide - which could be mistaken for babesia. they are not babesia - do not differentially stain - and do not occur if i dip stain the slides.
i think you may be referring to the Schaller lab ref guide - if so that is the best source out there for detecting babesia via microscopy - the main problem being the v low levels of parasitaemia in peripheral blood in chronic patients - so its actually very hard to find - even if its there ( babesia sequesters in the capillaries rather than in the main venous blood supply so its very hard to find it in most blood draws - even in infected persons).
Dr Lindner has presented to ILADS on doing capillary blood smears to improve the chances of finding it - i have tried this also and still not found definitive examples of babesia - just a few suspicious could potentially be babesia type objects - it has many forms - but random bits of stuff that pick up stain - like platelets, stain artefacts, cellular debris etc are pretty common in slides - so its far from easy to get a definitive result - so i am still 50/50 on it at the moment - and looking for ways to make a more positive diagnosis
the pale blue chunks of fibrin in the slides above could be caused by either bartonella or babesia - so again suggestive - but not definitive.