IV saline for dysautonomia in ME/CFS and long COVID

There are no FDA-approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, a problem patients are acutely aware of. Despite this shortcoming, there is one treatment that has the potential to give people with these diseases a boost in physical and cognitive function: intravenous (IV) saline.

I wish people with ME/CFS and long COVID had better access to IV saline, one of the most helpful treatments I have found for dysautonomia, especially orthostatic intolerance (OI). OI is a worsening of lightheadedness, dizziness, cognition, nausea, and other symptoms when upright. Many cardiologists will not touch this debilitating problem beyond suggesting more salt, compression garments, and a limited set of medications that help some but not others. General practice doctors are reluctant to arrange hydration orders because OI, and the factors driving it, are often beyond their expertise. Even seasoned ME/CFS clinicians keep this function-giving therapy at arm’s length. Why?

I get it. IV access carries risks, can be challenging to get insurance to cover, and requires close oversight. Some of these concerns can be addressed, yet doctors often focus on the worst-case scenario: “You will get sepsis and die!” OK, it would be irresponsible for me or anyone else to minimize the risk of sepsis; I live in a healthy fear of it daily. However, throwing out the baby with the bathwater does come to mind as there are many ways of safely administering IV saline, some safer than others. One can mitigate many risks – but it requires a willingness and ability to take on that responsibility. In a subsequent piece, I discuss the ins and outs of different forms of IV access.

Doctors also need to weigh the risk of not allowing access to IV saline. Orthostatic intolerance can also carry significant risks. Syncope (fainting) can end with dire consequences. A lack of adequate perfusion to the brain makes everyday activities, such as driving and decision-making, challenging and dangerous. It’s hard to think and react with a brain deprived of adequate oxygen.

I often wonder if chronic illness specialists understand the importance of marginal gains in function. Ask any person with ME/CFS or long COVID, and they would eagerly tell you that even a 10% improvement would make a meaningful difference. Even small gains could allow sitting up long enough to visit with family or friends, prepare a simple meal, or bathe. We aren’t asking for much here – just a chance to do basic things. Given the paucity of efficacious treatments for these diseases, trialing IV saline seems like a no-brainer – at least as a consideration, if warranted.

In this piece, I explore a practical approach for building a case for trying IV saline. I assume that less invasive measures, such as taking prescription drugs (e.g., midodrine, fludrocortisone, desmopressin, beta-blockers – for an extensive list of medications used to treat dysautonomia, see Table 6), increasing electrolytes and fluids, and wearing compression garments, have been tried and are not cutting it. Similarly, it is worth evaluating drugs and supplements that may contribute to vasodilation and hypotension (low blood pressure), such as calcium channel blockers, ACE inhibitors, sympatholytic drugs, diuretics, and cannabis products, including CBD. These are essential first-line approaches before considering IV saline, which is more invasive.

For an in-depth review of critical papers on autonomic and hormonal drivers of OI in ME/CFS and long COVID, see Cort Johnson’s excellent series in Health Rising. See also the recent consensus statement on autonomic dysfunction (i.e., dysautonomia) in long COVID. I refer readers to this latter paper to understand how different forms of dysautonomia are assessed.

Building a case for IV saline: What is your angle?

I will be honest – getting insurance approval for IV saline requires some justification (= data). I warn readers that many infusion pharmacies in the United States are not filling hydration orders even if you get insurance approval, making it even more difficult to try this treatment. This problem has worsened with the pandemic due to supply and nursing shortages. Figuring out your angle for IV saline may help you and your doctor advocate better for this treatment.

Not everyone with ME/CFS and long COVID will benefit from IV saline, but several related and overlapping co-morbid conditions point to IV saline being helpful for many people:

Orthostatic hypotension (OH) can be primary or secondary. The pathway to orthostatic hypotension in ME/CFS and long COVID is likely secondary due to inflammatory/autoimmune and other mechanisms. The source for this figure is here.

Hypotension (low blood pressure): Some people with ME/CFS and long COVID have a type of dysautonomia called orthostatic hypotension. OH is a type of hypotension in which people have impaired regulation of standing blood pressure due to autonomic dysfunction. This can be due to primary or secondary causes, such as autoimmunity and inflammation. In this condition, blood pressure drops upon standing. Neurocardiogenic syncope (NCS) (also known as vasovagal syncope or fainting) can also be triggered by orthostatic (being upright) stress. These forms of hypotension are diagnosed during a tilt table test or a NASA lean test (which can substitute for a tilt table test in a pinch).

Some people also have low blood pressure even when lying flat. Others may experience post-prandial hypotension for an hour or so after eating.

How you feel when your blood pressure is low matters most. The low end of the normal range for BP is 90/60 mm Hg, which is hardly optimal for many of us. I have one friend who feels somewhat normal when her systolic BP is in the 80s, whereas I feel like death when my numbers get this low or lower. It’s easy to normalize feeling poorly over time if that is all you experience.

Unlike hypertension, there are not many pharmaceutical drugs that help a lot with hypotension. IV saline can help low blood pressure by increasing blood volume, but it also can stimulate the arterial baroreceptors that aid in controlling blood pressure, depending on the infusion rate. Baroreceptors are stretch receptors located on the aortic arch and internal carotid artery. These receptors sense and relay changes in pressure and trigger a cascade of communication among the brain, cranial nerves X (the Vagus nerve) and IX, the cardiac centers in the brainstem, the adrenal medulla, and finally, the heart and arterioles to regulate blood pressure.

If you suspect low blood pressure is worsened by being upright, get a decent blood pressure cuff. Autonomic specialists suggest taking blood pressure and heart rate while supine (lying flat) and at one-minute intervals after standing for at least 10 minutes in the morning, afternoon, and evening for a week or so. This may be a hardship for people with a more severe illness level; if so, try to do at least one standing test or adapt it to sitting upright. After using this approach initially, I now monitor my BP daily shortly after I wake up while lying flat because I find this most informative (for my case). Use the data table from the NASA lean test (see page 3) to document your patterns.

Collecting data on your responses to standing might also help with a referral to an autonomic specialist.

If you aim for insurance approval for IV saline, collect BP and heart rate data for several weeks before starting a trial with IV hydration. Continue recording BP after beginning the treatment to document any improvements. I used a similar approach to show that saline improved my BP, which helped to build a case for IV saline over the long term. I will discuss my personal journey with IV saline in a future blog.

POTS is a disabling condition with diverse symptoms impacting the quality of life.

Postural tachycardia syndrome (POTS). POTS is another autonomic nervous system disorder and is characterized by a 30-beat rise in heart rate upon standing. This simple definition captures only the tip of the iceberg regarding the suffering and myriad symptoms those with POTS experience. Few doctors seem to understand this.

Many people with POTS describe feeling much better on IV saline. As with orthostatic hypotension, POTS can be diagnosed using a tilt table or a NASA lean test. However, getting a formal diagnosis can take years, a problem only worsened by the pandemic, burgeoning long COVID cases, and a limited number of specialists with expertise in autonomic dysfunction. Dysautonomia International is an excellent resource for finding doctors, published studies, and support.

People with POTS often have blood pooling in their extremities. When this occurs, less blood is in circulation, mimicking low blood volume. IV saline can help offset blood pooling by plumping up plasma volume.

Dr. Sanjay Gupta, a cardiologist from York, UK, who treats POTS with IV saline, has many excellent educational resources that might help you justify IV saline to your doctor. 

Orthostatic intolerance (OI): OI is a severely disabling condition involving worsening symptoms when upright and relieved in a recumbent position. Symptoms include dizziness and presyncope; visual disturbances (including blurring, color changes, white-out, graying-out, enhanced brightness, darkening or blackening, and tunnel vision); hearing disturbances (including impaired hearing, crackles, and tinnitus); pain in the neck (occipital/paracervical and shoulder region), low back pain or sharp chest pains; weakness, fatigue, lethargy; palpitations and sweating; and syncope. These symptoms overlap considerably with ME/CFS and long COVID, suggesting many with these conditions may also suffer from OI.

OI is often conflated with POTS, but many factors, including low blood pressure, can contribute to it. Recent studies have shown profound OI with and without POTS in ME/CFS. A 2020 paper using Doppler imaging of the internal carotid and vertebral arteries during tilt testing found evidence of reduced cerebral blood flow, regardless of POTS. Another small study, including ME/CFS and long COVID subjects, showed the same decreased cerebral blood flow pattern in both groups, with and without POTS. Other studies have found that people with OI are likelier to suffer from low blood volume (see below), suggesting IV saline is worth trying for those who suffer from this condition. It is unclear if saline would help OI symptoms stemming from reduced blood flow to the brain, but the ultimate test is to do a trial and see if symptoms improve.

Exercise/exertion intolerance: If you have ME/CFS or long COVID that meets the diagnostic criteria for ME/CFS, you have some degree of exercise/exertion intolerance, as this is the core feature of both conditions. I know of only two treatments reported in the literature that improve exercise intolerance (though I touch on a third in other blogs). Ampligen, a drug seemingly caught in a neverending loop of underpowered studies and stalled FDA approval for ME/CFS, improves exertion intolerance. Hopefully, this drug will be approved for long COVID and, eventually, ME/CFS (I know, this sucks for ME/CFS, but this seems to be the track this drug is on presently).

The second treatment that improves exertion intolerance – you guessed it – is long-term IV saline! Workwell Foundation did a case study following a woman who administered IV saline regularly. She did a 2-day cardiopulmonary exercise test (CPET) at semi-regular intervals for over a year and found that her VO2 max increased over time! (VO2 measures how much oxygen your body can use). Many thanks to the poor woman who did so many CPETs! After stopping the saline, her VO2 max declined. Clearly, saline is not a cure, but it can help improve exertion intolerance and function.

This figure shows that OI is associated with three related measures of blood volume – blood volume, erythrocyte volume, and plasma volume. From VanCampen and Visser 2018.

The ultimate test showing exercise intolerance is a 2-day CPET. If you have had this test, the results could also be part of the justification for IV saline, depending on your findings.

Hypovolemia: You may wonder why I did not lead with this condition, as it could underly many of the problems we see in dysautonomia. The reason is simple: the test for low blood volume is rarely done. It is usually completed in a hospital in a nuclear medicine department. The test involves injecting a set volume and concentration of radioactive iodine tracer and comparing it to the concentration of the tracer after injection. Most ME clinicians assume that hypovolemia is common and rarely test for it. 

Low blood volume can be triggered by many causes, including blood loss (duh), hormonal dysregulation, dysautonomia, and chronic dehydration. If you suspect low blood volume, it might be worth additional tests to determine if there are other contributing factors.

Ideally, people suffering from the conditions outlined above would have had a thorough differential diagnosis to determine the most appropriate course of treatment. As someone obsessed with getting to the source of my medical problems, I have realized that medicine is focused on symptom management and often involves throwing treatments at the wall to see what sticks. Sometimes we find treatments that help but do not know the precise mechanism(s). I put IV saline in this category, but it is still worth pressing your doctors for more advanced testing in case other treatments are warranted.

Low blood pressure, POTS, orthostatic intolerance, exertion intolerance, and hypovolemia can be related and represent some of the diverse manifestations of dysautonomia, autoimmunity, vascular and hormonal dysregulation in ME/CFS, and long COVID. Documenting positional patterns of your symptoms, blood pressure, and heart rate is an excellent place to start building a case to try IV saline for dysautonomia if other treatments are not helping much.

Check back for upcoming blogs on IV access for saline and my journey to getting approved for long-term IV saline.

The usual disclaimer: I am not a medical professional, but I speak from my experience as a patient. ME/CFS and long COVID are multisystem diseases with diverse presentations. For this and other reasons, IV saline isn’t a one-size approach.

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