I'm between the devil and the deep blue sea with getting weekly IVs. I know they would help but my veins are shot from chemo three years ago, and my immune system doesn't work that well either. But, boy, is it hard to drink enough!
I can relate to how hard it is to drink enough. We are seeing more research about the issues with the endothelial cells which affect our veins, plus the dysautonomia that seems to be telling my body to only maintain a low blood volume. The added damage from chemo is tough. I wonder if over time the veins heal.
I’m not a physician, but I see patients with cancer and chronic illnesses in psychotherapy. I’m curious whether drinking water, even if you drink plenty, may not work because it doesn’t get absorbed properly. I’ve wondered if this might be a problem for someone with ME/CFS, LC, or other post-infection chronic illness syndromes. It’s certainly worth exploring with your doctor. :)
We could certainly use more research about why we aren't absorbing (or holding) blood volume normally. There is research showing that red blood cells of people with ME don't keep normal shape. There are also indications we may have microclots. No idea if that is a factor in the abnormal blood volume. We also have seen there is something in our blood that is not in healthy blood. ME affects multiple systems and blood volume affects many things.
I'm finding that normal water is cleared quickly, by for example having to urinate three times during the night, and salted water stays in my longer, only having to urinate once or twice per night.
I fear it is very rare that doctors understand the usefulness of IV saline (or lactated ringers) to help manage ME symptoms. I hope the more who learn about this will help get the word out.
It gets even more complicated and frustrating! When the first people with post-acute infection chronic illness in the US were diagnosed, they were diagnosed with ‘Chronic Epstein-Barr Virus.’ It was because most had tested positive for active EBV and then never fully recovered. Later on, some researchers wondered if it was a different virus that reactivated the EBV, and with a lack of consensus (and lack of research funding), doctors changed the diagnosis to ‘Chronic Fatigue Syndrome.’
At the time, there was little to no awareness that in Europe, physicians were calling the same condition ‘Myalgic encephalomyelitis.’ In the meantime, here in the US, due to the discovery that CFS was associated with significant dysregulation of the immune system, many physicians began calling it ‘CFIDS’ or ‘Chronic Fatigue Immune Dysfunction Syndrome.’
All of this is maddening. Infectious disease specialists had always known that there were post-infection syndromes that included recurrent or persistent low-grade fever, tender and painful lymph nodes, bilateral joint pain, post-exertional malaise, etc. It was swept into the dustbin of medical research.
Now, with LC (Long Covid), it is more in the public eye than ever. LC patients are suffering similar symptoms, including Post-Exertional Malaise. I am concerned that the tides are going in the other direction now, and patients will be viewed skeptically by physicians who discount their LC symptoms.
It is reasonable to be concerned that physicians may discount LC symptoms. We need widespread education about the reality of ME as defined by experts in the International Consensus Criteria (not CFS) and well funded research into both ME & LC.
I wonder why insurance won’t cover IV hydration for people with ME/CFS but will cover it for POTS?
Given the overlap between the diagnostic criteria for both syndromes, it would make sense to cover it for chronically ill patients who meet the requirements.
I have noticed that, to a certain extent, medical specialists use different diagnostic nomenclature. Infectious Disease doctors see things through one lens, Cardiologists through another. Also, I know a few neurologists who use ‘Dysautonomia’ and ‘Autonomic Neuropathy’ interchangeably. I wonder if this may be a part of what makes treatment reimbursement challenging.
It is frustrating. There is so much systemic bias with a strong hold over of viewing ME/CFS & CFS as psychological. The thinking seems to be no need to cover medical treatments for something that is treated with exercise & therapy.
ME & CFS used to have different ICD codes. Now they are lumped together so it seems the insurance decided to make the code fall under similar to what CFS was... which included unbillable for fluids. In my experience very little medical treatment was covered under the CFS code.
I'm between the devil and the deep blue sea with getting weekly IVs. I know they would help but my veins are shot from chemo three years ago, and my immune system doesn't work that well either. But, boy, is it hard to drink enough!
I can relate to how hard it is to drink enough. We are seeing more research about the issues with the endothelial cells which affect our veins, plus the dysautonomia that seems to be telling my body to only maintain a low blood volume. The added damage from chemo is tough. I wonder if over time the veins heal.
I’m not a physician, but I see patients with cancer and chronic illnesses in psychotherapy. I’m curious whether drinking water, even if you drink plenty, may not work because it doesn’t get absorbed properly. I’ve wondered if this might be a problem for someone with ME/CFS, LC, or other post-infection chronic illness syndromes. It’s certainly worth exploring with your doctor. :)
We could certainly use more research about why we aren't absorbing (or holding) blood volume normally. There is research showing that red blood cells of people with ME don't keep normal shape. There are also indications we may have microclots. No idea if that is a factor in the abnormal blood volume. We also have seen there is something in our blood that is not in healthy blood. ME affects multiple systems and blood volume affects many things.
I have low platelets now, my oncologist tells me.
I am sorry to hear you have that added issue. None of this is easy.
I'm finding that normal water is cleared quickly, by for example having to urinate three times during the night, and salted water stays in my longer, only having to urinate once or twice per night.
I find what you have said very interesting.
In addition to having ME, I have POTS and sitting is difficult.
Where I live it is a utopia that doctors understand that intravenous saline infusions can help us.
Instead, they only propose transcranial magnetic stimulation.
Me parece súper interesante lo que has expuesto.
Además de tener ME, tengo POTS y estar sentada es complicado.
Donde yo vivo es una utopÃa que los médicos entiendan que las infusiones salinas intravenosas, pueden ayudarnos.
En lugar de eso, sólo me proponen estimulación magnética transcraneal.
I fear it is very rare that doctors understand the usefulness of IV saline (or lactated ringers) to help manage ME symptoms. I hope the more who learn about this will help get the word out.
It gets even more complicated and frustrating! When the first people with post-acute infection chronic illness in the US were diagnosed, they were diagnosed with ‘Chronic Epstein-Barr Virus.’ It was because most had tested positive for active EBV and then never fully recovered. Later on, some researchers wondered if it was a different virus that reactivated the EBV, and with a lack of consensus (and lack of research funding), doctors changed the diagnosis to ‘Chronic Fatigue Syndrome.’
At the time, there was little to no awareness that in Europe, physicians were calling the same condition ‘Myalgic encephalomyelitis.’ In the meantime, here in the US, due to the discovery that CFS was associated with significant dysregulation of the immune system, many physicians began calling it ‘CFIDS’ or ‘Chronic Fatigue Immune Dysfunction Syndrome.’
All of this is maddening. Infectious disease specialists had always known that there were post-infection syndromes that included recurrent or persistent low-grade fever, tender and painful lymph nodes, bilateral joint pain, post-exertional malaise, etc. It was swept into the dustbin of medical research.
Now, with LC (Long Covid), it is more in the public eye than ever. LC patients are suffering similar symptoms, including Post-Exertional Malaise. I am concerned that the tides are going in the other direction now, and patients will be viewed skeptically by physicians who discount their LC symptoms.
It is reasonable to be concerned that physicians may discount LC symptoms. We need widespread education about the reality of ME as defined by experts in the International Consensus Criteria (not CFS) and well funded research into both ME & LC.
I wonder why insurance won’t cover IV hydration for people with ME/CFS but will cover it for POTS?
Given the overlap between the diagnostic criteria for both syndromes, it would make sense to cover it for chronically ill patients who meet the requirements.
I have noticed that, to a certain extent, medical specialists use different diagnostic nomenclature. Infectious Disease doctors see things through one lens, Cardiologists through another. Also, I know a few neurologists who use ‘Dysautonomia’ and ‘Autonomic Neuropathy’ interchangeably. I wonder if this may be a part of what makes treatment reimbursement challenging.
It is frustrating. There is so much systemic bias with a strong hold over of viewing ME/CFS & CFS as psychological. The thinking seems to be no need to cover medical treatments for something that is treated with exercise & therapy.
ME & CFS used to have different ICD codes. Now they are lumped together so it seems the insurance decided to make the code fall under similar to what CFS was... which included unbillable for fluids. In my experience very little medical treatment was covered under the CFS code.