The exercise physiologists at the Workwell Foundation are pretty darn good at providing thought provoking case reports. A couple of years ago, a Workwell case report indicated that a very ill ME/CFS patient was able, using Workwell’s heart rate-based exercise program, to not just halt the steady decline in her health but improve it – an improvement which even showed up in her cardiopulmonary test results. She was not well – she had not fixed her energy production problems – but she was much stronger and the results showed that.
Saline has been used for years to increase blood volume and ameliorate crashes in ME/CFS. Since anesthesia is known to reduce blood volume, Pat, for instance, provided a letter from her doctor prior to her surgery asking that she be given saline before and after surgery.
“She has a chronic low blood volume state, the severity is well predicted by her baseline pulse. She will be more hemodynamically stable with at least one liter of normal saline on board pre-op, and the line continued for 24 hours post-op to allow additional fluids, continuing fluids at 100 to 150 cc/hour to allow an additional 2 liters post-op. She should then push fluids with electrolytes for 3-4 days to improve her recovery rate.”
She didn’t experience a relapse from any of the three surgeries she ultimately went through. I know of another person whose severe post-surgical relapse was resolved after she received saline infusions.
Case Report
In their most recent case report Workwell assessed the effects of saline in a person with ME/CFS over almost two years. With the two-day cardiopulmonary exercise tests (CPETs) the folks at Workwell give for disability and research, they’re well aware of the help that saline infusions can give.
We know that low blood volume is common in ME/CFS – Hurwitz documented that over a decade ago – and is found in postural orthostatic tachycardia syndrome (POTS) as well. Since then, the evidence for it has only grown. The reduced preload, or reduced blood flows to the heart, and the microcirculatory problems Systrom found, are both suggestive of low blood volume. The reduced stroke volume sometimes seen in ME/CFS could, in part, be due to low blood volume.
Low blood volume isn’t the answer to ME/CFS – there’s more to the disease than that, but it does play a part. Getting blood up into your brain isn’t made any easier by not having enough blood to start with.
Saline has been used for years to increase blood volume and ameliorate crashes in ME/CFS. Workwell assessed the effects of saline in a person with ME/CFS over almost two years.
Saline infusions which increase blood volume have long been used to ameliorate crashes in people with ME/CFS. But what about using saline regularly? Could that help?
Workwell went to work with a perfect subject – a 38-year-old woman with a classic post-infectious onset: she came down with chronic fatigue syndrome (ME/CFS) after a bout of infectious mononucleosis when she was 21. At the time, she was a full-time college student and intercollegiate basketball player, who reveled in physical exercise.
She had all the symptoms of ME/CFS, plus chronically low blood pressure (and did not appear to have POTS). Subsequently, she became unable to engage in sustained exercise and was unable to work.
Fifteen years later or so, she was fitted with a central venous line and received a liter of 0.9% saline solution daily for almost two years (678 days). Thankfully, she was willing to have her condition monitored – and in the most taxing way. Ten times during that period (after 15, 55, 92, 125, 180, 248, 317, 157, 420, and 675 days) and 30 days after she stopped the IV saline, she did a maximal exercise test.
Workwell’s testing revealed that the saline helped physiologically. Her peak VO2 levels – the maximum energy output she could muster during the exercise test – soared from 72% of normal to 98%. Her peak heart rate rose from 87% to 104%. Her systolic blood pressure – a major problem for her – rose 50% (115 mmHg to 174 mmHg); plus, she cut her recovery time from the exercise test from 5 to 2 days. By the time she stopped the saline, her heart rate and systolic blood pressure were continuing to improve.
A few other measurements hit a plateau earlier, and had declined a bit, but were still well above her baseline. As Workwell did not report improvements in her VO2 max or her time to enter anaerobic threshold, those aspects of exertion apparently did not improve. Still, her brain fog reduced steadily, and symptomatically, she was in her best shape at the end of the treatment period.
The results suggested that her lower blood pressure and her inability to reach peak heart may have largely been the result of her low blood volume. Increasing her blood volume allowed her heart to fill with more blood – thus improving stroke volume. The increased sodium load may have helped with exercise as well.
Thirty days after going off saline, her peak heart rate, blood pressure and peak workload remained substantially improved. Other measurements, however, mostly returned to baseline.
Workwell proposed that neuroinflammation-induced damage to the nervous system, which damaged the “central autonomic control structures”, could explain the low blood volume and orthostatic intolerance seen in ME/CFS.
While it didn’t cure her, saline, then, helped this patient quite a bit – as it has many people with ME/CFS/FM.
Saline Studies
Despite the fact that saline is used regularly in ME/CFS, few studies have been done. A 1997 study found that giving 1200 mg. sodium chloride daily for three weeks resolved the orthostatic hypotension (low blood pressure upon standing) in half of the ME/CFS patients tested. (Those who did not improve had low renin levels).
Similarly, Burklow, in a 1999 study, found that giving saline to adolescents who were prone to fainting allowed all of them to pass a 30 minute tilt table test (TTT) without fainting. Burklow believed the saline was improving autonomic nervous system functioning.
A 2017 study found that simply giving saline infusions (between 1.1 and 2.1 L) every 10 days or so for three to six months dramatically improved the symptoms of young women with postural orthostatic tachycardia (POTS – increased heart rate during standing).
Over 90% of the participants experienced significant improvement in symptoms lasting an average of three days post infusion. The average orthostatic hypotension score dropped in half (from 6.6 to 3.1). Dizziness symptom scores dropped from 7.2 to 2.8, fatigue scores from 8.2 to 4.3, weakness from 6.3 to 3.4. The patients’ ability to stand for a long time and walk for a short or long time about doubled. 50% of the participants reported no need for further infusions – except during times of stress – within three to six months of starting the intermittent infusions.
Those were remarkable findings given the patient population involved: every participant had tried and failed to improve on at least four drugs used in POTS.
Despite the blood volume depletion and several intriguing study results, saline IVs – even for temporary relief – aren’t recommended or even discussed in several POTS journal and web overviews.
Getting a venous line inserted and then getting saline regularly obviously isn’t an option for the vast majority of us. But what if there was another easier and cheaper way of increasing blood volume? Recent studies in ME/CFS and POTS suggest one particular oral rehydration solution may work very well.
- Check out more resources on saline and ME/CFS/FM and POTS here.
Yes, we also thought it would help. So many CFS doctors spoke of it. My daughter was receiving saline drips, 500ml-1 litre for several years every second day. She had a pic line for another reason. But I can’t say that the saline helped at all, So, she had the pic line removed and due to having had it in for so long, has now developed a deformed shoulder; there is a term for this but it escapes me at the moment. She also had to have cortisone shots into the shoulder because the pain was so acute. This is the result of keeping the shoulder in a certain position, so as not to irritate the pic line. Thanks Cort for your hard work. Thank you.
Sorry to hear that. We tend to think of low blood volume as present in every one with ME/CFS but I don’t think Hurwitz found that. I think he found in a lot of people but not everyone. I hope your daughter has doing better. She’s lucky to have parents who have really dug into learning about ME/CFS.
… was it „ Frozen Shoulder“?
I had it for years, many women do, in Japan it’s a menopausal characteristic:/ like here our heatwaves.. BUT what helped me greatly to get back a painfree and fully(!) flexible shoulder were „functional integration“ lessons from an experienced FELDENKRAIS-teacher. I know nothing more soothing for CFS/ME constitution, when it comes to es-inhabit ones body in a friendlypainfree way… It’s passive movement, extremely slow pace, pauses belong to it, touch in intensity comparable to ostheopathic touches, totally individualized, and muscular tonus is ment to reduce and be reduced: instead – and this way even better:) – it’s neurological learning for the brain, to re-connect forgotten ways of moving or discovering habitually ignored ones so as to move with the lessest possible effort – smart brain:)))))) ( Read Norman Doidge on Feldenjrais for research:)) about 1 session a week and maybe a dozen should help greatly – for me, already the 1st opened worlds again.:) it’s all about reducing effort and forcing and learning like a baby again – to move freely, exploring strange new ways : maximum of gentleness, the parasympaticus is addressed to come to Ease:)))
I also have found Feldenkrais very helpful and over time my posture and also my ability to sit and stand comfortably is improving. Check out Afrons on YouTube.
Last year I did 1 liter of saline infusion every seven days for a month. The results were similar to the 2017 study mentioned here. The effects lasted about 2-3 days, and partially improved my symptoms of low blood pressure.
I switched to using Fludrocortisone when I have relapses, which had a similar effect.
I has surgery back in 2016 and my doctor kept me on saline afterward until I actually got into the wheelchair to go home – about 36 hours. I felt better for the next two weeks or so than I had felt when I walked in for the surgery. Since then, I ask for saline whenever it’s available. Most of my doctors have no objection and I can really tell a difference.
How about that? Have surgery and feel better afterwards! (lol)
Thanks for covering this, Cort. I have orthostatic hypotension and am fairly certain I have low blood volume. (I have been blaming this on my lack of exercise, and I’d be delighted to quit feeling guilty about it.) I eat a lot of salt and tried taking fludrocortisone, but it upset my stomach, so had to discontinue. I’m looking forward to hearing about the oral rehydration solution you mention. Thanks for all of your hard work keeping us all informed.
The ORS findings were very interesting. I’m going to give it a try.
When can we find out about the ORS, Cort….. may make the world
of difference to me.
Hi Billie, how are you? Tracey
Soon as I find out what the findings are, I’ll probably give it a try myself. Thanks again!
Apologies for slightly off topic, but I don’t think so many go back to old blog comments;
Got results of dysautonomia work-up and I am–negative–excepting for ‘altered heart rate.’ (I get the impression that this kind of work-up is more inclined to focus on syncope–kind of like sleep testing focusing on apnea).
Also talked to my PA at Stanford’s CFS Clinic and it seems that for now, I’m at the end of the line for their ‘clinical pathway’ trials. I’m rather disappointed but I’ll keep looking as something new is always bound to come up–if one can wait long enough.
In other news, here on the U.S. West Coast, after a day of bright orange skies from all the fires, we have settled in to just plain murky yellow grey horrible air quality. Warnings to stay inside.
So I don’t conclude on such a bummer report, here is a very good DYI for making your own indoor air filter; https://www.youtube.com/watch?v=4qr1Aj6Di7w
Time to just pet the cats and take a rest…
Sorry to hear there were no answers for you Nancy! I imagine they did not measure cerebral blood flows? That recent blog indicated that many people with ME/CFS without POTS or OH still have reduced blood flows to the brain.
This is a really intriguing topic. Stay tuned!
No cerebral blood flow measurements. I read–and forwarded to my doctors–your blog on that subject along with the link to to the actual research. Thanks!
My brain works fairly well (as apparently yours does too, given the quality and lucidity of your blogs!)–except for word finding and occasional hesitation. I know you mentioned that you got a negative result on your TTT test too. Maybe it IS the blood flow and not so much the autonomic system (although inexorably linked). I WILL stay tuned!
Regarding saline, I have a cat with malabsorption and give him sub-Q saline/electrolytes daily. If I miss a day it really makes a difference–and not in a good way. H2O and those minerals are so very important! For me magnesium has been especially helpful.
Yes I “passed” my tilt table test and felt horrible doing it. My twin, on the other hand, had no problems at all.
https://www.healthrising.org/blog/2020/08/30/chronic-fatigue-syndrome-orthostatic-tolerance-dizziness/
Hi Nancy,
Sorry you didn’t get more joy from Stanford but as you say – “I’ll keep looking as something new is always bound to come up.”
And what I’m picking up from this blog is maybe there are some things that we can do that can help some of us with our quality of life, on a daily basis – even though it may not be a ‘cure’. That’s my approach really – what can I do (that’s not dangerous) to enable me to function a bit better. It’s a bit muddly and imperfect, especially with a brain that struggles with holding a range of information at the same time!
As I function better, then some people think – see, there’s nothing wrong with her… If only they could witness behind the scenes of Tracey’s cobbled together DIY healthcare plan. However I don’t feel the need to prove myself so much anymore.
I do strongly believe there will be a greater understanding in the future and that gives me a feeling of hope and I’m better off in that frame of mind… I think we need to stay together, support each other and hang in there.
Hello Tracey Anne, you remembered me!! Good memory….. I’m travelling
rough….. hard times…… too many emotional disturbances, and not able to
get the help I need. In a big “crash”, but grateful to be living in Australia. lI feel this hydration thing is applicable to me. I hope you
are okay…..
My daughter (POTS, hEDS, MCAS) has been getting daily saline for the last two months and just had a port placed to continue indefinitely. It has made a major difference for her. For whatever reason, one of the quickest and most obvious changes for her was a dramatic drop in gut symptoms (pain, low appetite, nausea, etc.). It helps a lot of other things as well, but we weren’t really expecting the gut symptoms to improve so quickly or dramatically!
Congratulations. I wonder if her gut improvements are due to autonomic nervous system improvements. Some researchers think saline is able to do that.
When blood volumes are low AND people have high nor-adrenaline levels then this is very normal:
(Nor-)adrenaline shifts blood away from “less urgent” organs and sends it to “more urgent” organs. Among the less urgent organs are the entire digestive tract and the reproductive tract. Among the more urgent organs are the brain, liver and skeletal muscles.
Many ME/CFS patients are of the “fight or flight” type, indicating increased levels of (nor-)adrenaline. Note: (nor-)adrenaline is not only related to mental stress but also to biological stress. As said, it helps to push blood to the brain. That is a “good use case” for people with too few blood for enough of it to reach the brain.
The combination of chronically increased (nor-)adrenaline with chronical low blood volumes should leave the blood supply to the gut 24/7 in shambles. As the gut is so important in regulating things like inflammation, immune functioning, producing neurotransmitters and of course providing the body with nutrients a regular improvement in blood supply to the gut alone could be a large reason for long term intermittent saline users to improve in health. Thanks for bringing this up Ericka!!!
You’ll get to this on time Cort, but in the interim can I run my own experiments by drinking a litre of salt water a day?
Is it that simple?
Are there risks?
This is the first I’ve read of saline, and the numbers are startling. It gives me hope.
As sir, do you. ?
I was wondering the same thing Lee… waiting to hear the answer!
Cort, nice to hear what is ‘next up’
perrier,
thanks for sharing the complications of pic line.
hope your daughter is able to get enough pain relief to receive some sort of physio (think they have machines that are painfree that somehow break down scar tissue?— maybe infra red or ultrasound waves?)
Bear in mind….IV does not go via the stomach. Salt can be very irritating to the stomach and challenge the microbiome.
I just learned that drinking a lot of salt water is a no-no. It will cause fluid to accumulate in your tissues – not your circulation. Then excreting the salt could deplete your potassium.
The formula does include salt but other things as well. Coming up shortly.
Very interesting!
The likely reason salt water doesn’t add much to the circulation (nor does slowly dripped IV saline according to another commenter) seems to be clear: fluid (including blood water content arriving at the cells) recirculates by the veins AND the lympathic system. If the lympathic system is clogged by plenty of “debris” (due to chronic inflammation or infection…), then… …drainage by the lymphatic system drops AND blood volumes should reduce due to the need to reduce “inflow” of fluids to match removal of them.
Think of it: the lymph system is not a closed circuit unlike the blood flow system. All fluids removed by the lymph system must be supplied by something else: the arterial part of the blood flow?
If so, then the arterial blood flow “counts” on the lymph drainage to be sufficient. If not, blood pooling increases and reducing blood volume is a fair way to reduce blood pooling. What isn’t there can’t pool well.
It doesn’t seem like there’s a way to reply to a reply…
I’m trying to reply to “dejurgen” to say how interesting his theory is that the reduced blood volumes seen in many ME/CFS patients may be an adaption due to lymphatic clogging.
Is this written up somewhere? Should it be?
Yes, I would like the answer on that…I have always found drinking salt water (when I remember to)…does help the weakness/fatigue at least.
There is a potentially better way….Coming up on the next blog
What about Fludrocortisone with the salt? I only use it when I need to be upright for long periods of time like when traveling, etc. I occasionally get headaches and worsening insomnia as a side effects so I don’t use it daily. It definitely boosts my blood volume.
I have been using Gatorade for nausea for a few years now and find it helpful, although I am only moderately ill. My other favourite nausea buster is a fizzy tablet vitamin B drink called Berocca (which I think you can get outside Australasia?). Have been taking it for 27 years and it is the one and only supplement I have stuck with for all that time. I couldn’t stomach it every day but it takes the edge off the bad days.
Heh Debsw..
Have you tried peppermint tea or steeped ginger for nausea? Less additives than Berocca!
Good luck. Nausea really is yuk!
Can taking saline increase cholesterol or make blood pressure too high?
Like a previous commenter I felt wonderful after emergency saline rehydration (48 hours) and was able to stand/walk and mentally focus better for a few weeks afterward. That was in 2014. Since 2015 I have been paying for 500-750 ml of saline at least monthly at my ND office since my GP couldn’t understand the rationale & said she didn’t know of any way in the public (Canadian) medical system for me to access it.
Measurements include HR monitoring which I’ve been doing for many years, and routinely my resting HR improves by about 10-15 bpm after an IV. My blood pressure which is normally low, starts high at the start from walking into the treatment room, and gradually comes down to normal during the treatment. It remains in normal when I stand up & walk afterward.
Prior to starting IV saline I had been drinking 1-2 l of rehydration fluids daily (based on the WHO emergency rehydration recipe) for several years. I must continue to do this even with IV augmentation of blood volume as I sodium-waste (due to medication) and also lose fluids through frequent high-volume urination.
During the early weeks of COVID I had to go 7 weeks without my IV (then they opened the clinic one day just for me), and the difference in my mental and physical functioning was marked. My muscles became sluggish and my cognitive response time slowed, my PEM was more marked with less exertion.
To maximize retention of the extra fluids (and also to improve my quality of sleep by allowing me to stay in bed for more consecutive hours) I was prescribed a pediatric desmopressin nasal spray – like for bedwetting children although I hadn’t been wetting my bed – and that seems to help keep the digestive, cognitive, and upright benefits of the IV for about 10 days before they gradually wear off again over the next couple of weeks.
I will be very interested in whether the oral rehydration system mentioned above can rehydrate me better than my current system.
There are some parallels between
research findings in autism and ME/CFS,
even in treatment approaches
I was surprised to learn of MCAS in the autism community as well.
Sort of a parallel Cort for autism,
is Peter Lloyd Thomas and his blog Epiphany.
There are post on cerebral hypoperfusion
The one on cocoa I thought Tracey you might find relevant…
+ https://epiphanyasd.blogspot.com/2014/11/why-not-cocoa-flavanols-for-autism.html
+ https://epiphanyasd.blogspot.com/2015/11/brain-hypoperfusion-in-autism-cocoa.html
I’ve been on home health IV saline for 7 yrs and am positive it has helped me. I am much more functional on the days I receive it and have much more energy. I’m able to be upright longer without worsening of symptoms. I’m lucky to be able to get up to 2 liters twice/week.
PS days I don’t get the saline I drink unsweetened generic pedialyte and I add salt to everything bc my sodium is always low.
One more comment…dripping in the saline does not work as well in raising blood volume. Dr Peterson always said to get a liter in by an hour or less. I infuse it in about 40 minutes. If you have any cardiac issues or tend to have ankle swelling, then this is not for you. A slow drip may be good for hydration but not for adding volume.
Hi Meirav,
Yes they’re very interesting articles. Recently I received this article from Dr Brian Mowll The Diabetes Coach (who I subscribe to):
https://drmowll.com/is-dark-chocolate-healthy/
I became aware of the idea that dark chocolate contains antioxidants and can be anti-inflammatory and that it’s good for endothelial cells – that line the inside of our blood vessels – over the last few years or so. However I wasn’t aware that it increased blood flow as such, though I did know it put my blood pressure up (which I suppose is the same thing) When I was wired, not sleeping/not sleeping restoratively, if I ate some dark chocolate, my blood pressure soared. I also didn’t seem to be able to process it – I felt very unwell.
However now that I’m sleeping well and am not wired anymore (I can be stressed but not so wired), I seem to be able to process the darker chocolate. The 60% cocoa suits me best, which I know is not perfect. It can’t contain any milk. I do have a bit of a problem with the fructose but I sort of weigh up the pros and cons.
A few years ago I tried breaking down the ingredients of the chocolate, to work out which bits helped me. I might try that again and see if I can get some of that pure cocoa.
Currently, I get up at 6am and have my breakfast – 2 organic poached eggs, a spoonful of organic, grass fed beef, kale, psyllium husk, extra virgin olive oil, ginger, turmeric, apple cider vinegar and a stack of supplements, including CoQ10, a mug of Roibos tea (no milk) and then a couple of squares of dark chocolate, with another cup of Roibos tea. Throughout the morning I have more squares of chocolate to keep me going, otherwise my brain grinds to a halt. It doesn’t go so well if I eat the chocolate in the afternoon/evening as it then sets my sympathetic nervous system off and I can’t sleep. The choc chip cookies are not great, I know, and need to eliminate them from my diet!
I know I shouldn’t be running on dark choc but I have a problem with many carbohydrates and I don’t seem to be able to function on the very low carb diet. When I was younger and before all this started, I could function all day without eating. Long before intermittent fasting became fashionable, I just used to have days where I just wouldn’t eat anything – to lose weight. However now, I seem to have lost that ability to maintain the stamina to get through the day.
Anyway, you’re right I do find the articles relevant…
Tracey
Hi Tracey Anne,
When I was younger and still “healty”-ish I used to joke that chocolate is a medicine and should be refunded by health insurance. It could however go two ways: either I clearly improved after eating it or I clearly got worse. There was near no in between.
The main use of dark chocolate for me was head aches. Years later I learned that head aches induced by an upset stomach got worse with dark chocolate. Other head aches got better. The likely reason is simple: dark choclate can easily upset my stomach and gut.
Yes, I agree with you dejurgen, I think I’m the same. Sometimes the chocolate is good for me and sometimes it’s not. When it tastes really good, then it works for me. If I’ve already eaten too much (!) then I have a horrible taste on my tongue and I should know better not to eat any more…
This morning I felt fairly horrible as I’d had a bit of a reaction to drinking Lucozade and my eyes were puffy. Had a bit of chocolate and I felt a bit better.
However I have to remember eating chocolate is not a recreational activity!
I drink about 2 litres a day, I consider potato chips as a medication and use a lot of salt in my food. I also take 500mg of Naproxen, an anti-inflammatory. The side effects of anti-inflammatoires is salt and water retention. This retention increases my blood pressure and makes a huge difference in my cognitive experience . Almost 2 years of that regimen. Changed my life.
That’s so interesting. What do you drink 2 litres of?
I drink Mostly water and the almost daily beer.
Dejurgen:
What you’ve written about the lymphatic system sounds pretty important, but I’m having trouble following.
Is there another way to spell it out?
Thanks
Hi Lee,
The lymphatic system is also called the lymphoid system.
From Wikipedia(Lymphatic_system) (written like that to pass WordPress’ spam filter) I’ll try and summerize a few main points that are important in this idea of linking an overloaded or poor functioning lymphatic system to reduced blood volumes. The lymphatic system isn’t an easy system to understand however.
* “Unlike the cardiovascular system, the lymphatic system is not a closed system. The human circulatory system processes an average of 20 litres of blood per day through capillary filtration, which removes plasma from the blood. Roughly 17 litres of the filtered plasma is reabsorbed directly into the blood vessels, while the remaining three litres remain in the interstitial fluid. One of the main functions of the lymphatic system is to provide an accessory return route to the blood for the surplus three litres.”
See also Wikipedia(File:2202_Lymphatic_Capillaries_big.png), the picture under the title lymphatic vessels in the main linked Wikipedia article, for a better understanding how the lymph vessels look like.
=> From above points, it says that for every 20 liters of blood that is comming from the heart and “sips into the cells”, only 17 liters of that fluid is recovered by the capilaries leading the blood back to the heart. The remaining 3 litres “has to find it’s own (or another) way out of the cells”.
That removal of those 3 liters that are not recovered by the veins must be removed each day because pilling up 3 more liters of fluid in the body would get us hugely swollen up and make us become a huge bag of water.
* “The other main function is that of immune defense. Lymph is very similar to blood plasma, in that it contains waste products and cellular debris, together with bacteria and proteins.”
=> The lymph vessels collect “dirty fluid”, fluid contaminated with “debris”. As the finest lymph vessels are very small (see the linked picture), such “debris” can easily clog up these fine vessels and reduce the volume of lymph flow. That immediately reduces the volume of removed fluid. In other words, it’s getting very challenging to remove that 3 litres of “excess” fluid described above.
When for example the lymph vessels would only be able to remove 1.5 liters of fluid a day from the inside of the cells, then (very roughly) the amount of fresh blood siping into the inside of the cells has to be reduced to 10 liters a day where (roughly by assuming everything is proportional) only 8.5 liters returns by the veins to the heart and the other 1.5 liter is removed by the lymphatic system.
Important note: The heart pumps way more liters of blood around the body in 24 hours, but much of it “just rides the bloodstream without leaving” just like some homeless people keep circling the subway system without getting off in order to keep warm.
With ME/CFS people having likely plenty of inflammation and or infection around the body, plenty of that “3 liter fluid that has to be collected by the lymph system” is dirty and full of debris and sticky stuff reducing that 3 liter that is easily taken up by the lymphatic system in healthy people to lower amounts. So the 20 liters I quoted above is going to be too much in order for us “to not fill up like a baloon with liquid” and has to be reduced.
One way to reduce that 20 liters to get the fluid balance good again is reducing blood volumes (and blood pressure too).
I hope this is a bit more clear now. It remains a difficult topic.
Cort,
So glad to finally see an article like this to help me put some more of the pieces together. Fortunately, after reading “Safe uses of Cortisol” by William McK. Jeffries, M.D. some 14 years ago I began to understand my sodium wasting and resulting orthostatic hypotension which I had been experiencing since the sudden onset of ME/CFS approximately 18 months earlier. Jeffries discusses this in his book and recommends daily intake of 1/4 to 1 teaspoon of table salt (NaCl) daily. I have taken 1/2 tsp of salt ( 1.15 Grams sodium) in a glass of dilute fruit juice every am since and have never had another problem with it. I am 6’ tall and weigh 195 lbs. Additionally, the nausea which had been such a plague from the beginning in spite of every therapy I could find, resolved. I later discovered that low sodium levels often result in nausea. These days whenever I’m going to engage in any activity which will result in excessive sweating I take a salt tablet (1 Gm) before and after activity in addition to electrolyte replacement sports drinks and water. One liter of 0.9% NaCl solution contains 9 Grams NaCl, but I have to admit it is much easier and less costly to take it orally than I.V.
What might be seen as coincidence, this was at the same time that I finally found a provider who was willing to start me on a therapeutic dose of Cortisol/ Hydrocortisone. I started on 30 mg per day and remain on 40mg to this day. Because this is a therapeutic dose, much like HRT, I have never experienced any of the side effects of long term steroid use. If you are unaware, a 40 mg dose of Cortef/Hydrocortisone is basically equal to 10 mg methyl prednisone. MDs seem to have a VERY difficult time with this as a treatment concept. Fortunately this combination of the table salt, salt tablets and the Cortef have resulted in a dramatic improvement of my POTS type symptoms as well as the fatigue, weakness, loss of stamina, prolonged recovery time and brain fog. Today, at 66, I remain somewhat of a shadow of my previous self, but remain without the brain fog, able to “ pace” myself and accomplish many things around the house and community that I desire.
It’s my hope that this information will be of some help to the readers of this blog.
refined table salt is toxic. buy celtic sea salt and a jar of powder potassium, milion times better
I believe that water balance is a key factor in ME/CFS. I am constantly dehydrated yet as soon as I drink even a small amount, out it comes. Drawing blood is a nightmare because of the dehydration. This week I had to have 12 tubes of blood taken out of my hand because no vein in either arm worked. Not fun. My daughter has ME/CFS with the same water balance and poor vein symptoms. Dr. Cheney has said that it is like a kind of diabetes insipidus.
dejurgen:
Thanks for elucidating – that does indeed help. Appreciate. ?
Are you suggesting that the body might be reducing blood volume as a response to blood ‘pooled’ in a clogged lymphatic system?
How might one flush out ones lymphatics to get back to zero?
Thank you again.
Lee
Hi Lee,
More correctly said:
I think that the body might reduce blood volume as a response to blood (or better liquid derived from blood) pooled inside and in between CELLS when the lymphatic system fails to collect and drain it for example by being clogged up.
How to get it “reset”? If at all possible, that’s a hard one IMO. I’ll refer to https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/#comment-987813 for some ideas I wrote there.
Kind regards,
dejurgen
Hi Cort, I am wondering if you remember Alfred Blasi’s hydration salts from some years ago. They helped a lot of people and I am wondering if these are the same.?
Great info. this would expalin why celtic sea salt can give people so much better health when added to water.
No need for IV saline when we can add salt to our water. just bought a kilo !