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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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What is the better solution/long term solution? I know the best solution is exercise, but I can't do that right now due to my PEM.
This is really a question for your doc.What is the better solution/long term solution?
Personally, I would never take the medicine they give for bone health. As an alternative, I would take Orgono G5 Silica, and Nettle.
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.@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.
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.
That's good news and I'm gald they will be doing the testing.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.
So true.I do have a lot of those symptoms, but POTS or ME/CFS could easily explain that.
Granulomatous diseases: cat scratch fever;
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.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.
Hi-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
View attachment 50240
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
View attachment 50241
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
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.