{"id":12768,"date":"2017-04-28T08:25:59","date_gmt":"2017-04-28T08:25:59","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=12768"},"modified":"2017-04-28T08:25:59","modified_gmt":"2017-04-28T08:25:59","slug":"regular-use-of-saline-may-reduce-symptoms-boost-energy-in-pots-mecfs","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/regular-use-of-saline-may-reduce-symptoms-boost-energy-in-pots-mecfs\/","title":{"rendered":"Regular use of saline may reduce symptoms, boost energy in POTS (& ME\/CFS?)"},"content":{"rendered":"

Health rising<\/strong> blog post by Cort Johnson, 15 April 2017: Regular use of saline may reduce symptoms, boost energy in POTS (& ME\/CFS?)<\/a><\/h3>\n

ME\/CFS and POTS patients have used saline for years to feel better and recover from relapses. That\u2019s really no surprise. The documented low blood volume in both groups suggests that saline would be an excellent temporary help. One chronic fatigue syndrome (ME\/CFS) patient suffered a relapse after surgery that lasted and lasted until she got on saline, after which she recovered quickly. That, in retrospect, was no surprise, either. Anesthesia can be dehydrating and most of us are, as Dr. Klimas says, a quart or so low in blood volume.<\/p>\n

Saline is no panacea: it often helps but does not cure ME\/CFS or POTS and its effects don\u2019t last long. Still, it\u2019s a kind of secret weapon that many ME\/CFS practitioners use to give their patients temporary relief.<\/p>\n

That appears to be unusual for a disease. Check out a web page<\/a> on saline and you probably won\u2019t see any diseases mentioned.\u00a0 (Search \u201csaline IV\u201d on Bing, however, and the first disease that pops up is Chronic Fatigue Syndrome.)\u00a0 Saline IV\u2019s are generally used in medicine when patients can\u2019t take water by mouth or when they\u2019re dehydrated\u00a0or to\u00a0transmit medicines,.\u00a0 Almost always used in \u201cacute\u201d situations where blood volume has dropped precipitously due to blood loss or other reasons,\u00a0saline IV\u2019s are\u00a0rarely used chronically.\u00a0 In fact, the authors of the study below stated that medical authorities\u00a0do not recommend other than temporary use of saline<\/p>\n

Although saline has been used in ME\/CFS\/POTS for decades by ME\/CFS experts. research has been minimal.\u00a0 \u00a0A 1997 study<\/a> found that giving 1200 mg sodium chloride daily for three weeks enabled half of the ME\/CFS patients with low blood pressure upon standing (orthostatic hypotension) who had failed a tilt table test to pass it.\u00a0 (Those who did not improve had problems with low renin levels). Similarly, Burklow, in a 1999 study,<\/a> found that giving adolescents saline allowed all of them to pass a 30 minute tilt table test without fainting.<\/p>\n

More recently, a 2014 study<\/a> found that a single saline infusion did not significantly improve POTS patients\u2019 ability to exercise a couple of hours later. (The authors speculated that POTS patients might feel better but still not be able to exercise, and that repeated infusions might be needed to help with exercise.)<\/p>\n

Now comes a 2017 saline study in POTS which suggests that regular saline use might be very helpful indeed.<\/p>\n

The Study<\/strong><\/p>\n

Effects of intermittent intravenous saline infusions in patients with medication \u2014 refractory postural tachycardia syndrome<\/a>. Mohammed Ruzieh1,2 & Aaron Baugh1 & Osama Dasa1 & Rachel L. Parker1 & Joseph T. Perrault1 & Anas Renno1 & Beverly L. Karabin1 & Blair Grubb1. J Interv Card Electrophysiol (2017) 48:255\u2013260 DOI 10.1007\/s10840-017-0225-y<\/p>\n

In this study the average patient received between 1.1 and 2.1 L of saline every 10 days or so for three to six months. The Orthostatic Hypotension Questionnaire (OHQ) which evaluates symptoms and functionality, and the short-form SF-36 which evaluates quality of life were used to assess the effects of the saline. No control group was used.<\/p>\n

Mostly younger females with idiopathic POTS participated, but a significant number (25%) also had Ehlers Danlos Syndrome (EDS).\u00a0\u00a0 They were followed for 3-12 months and were allowed to have infusions when requested.<\/p>\n

Results<\/strong><\/p>\n

In conclusion, intermittent IV infusions of saline dramatically reduce symptoms in patients suffering from postural tachycardia syndrome. Paired with its relative safety and low cost, this makes it an ideal candidate for bridge therapy to allow the implementation of long-term interventions in highly symptomatic patients.<\/em>\u00a0 The authors<\/p>\n

\u00a0The results were impressive. Over 90% of the participants experienced significant improvement in symptoms lasting an average of three days. The average OHO 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.\u00a0 The patients\u2019 ability to stand for a long time and walk for a short or long time about doubled.<\/p>\n

The consistentcy of the response was remarkable given the high failure rate of other medications in this condition. Almost 70% had tried and failed to improve on beta blockers. Fifty percent had failed with midodrine, 44% with SSRI\u2019s and SNRI\u2019s, 42% with desmopressin and 30% with fludrocortisone.\u00a0 Each patient had tried and failed to improve on almost\u00a0four drugs.<\/p>\n

At some point 50 of the participants reported no need for further infusions, except during times of stress, within six months of starting the infusions.<\/p>\n

A Bridge Therapy?<\/strong>
\nSo how did the authors believe that IV infusions every ten days or so which provided symptom relief for about three days translate into long-term relief? They didn\u2019t know, but their best idea was that IV infusions gave the POTS patients a window to increase their activity levels and relieve the effects of deconditioning that often come with the disease. Ultimately, many didn\u2019t feel the need to have more IV infusions at all.<\/p>\n

The authors noted that deconditioning is common in POTS and poses significant problems. Plus, reduced stroke volume \u2013 a common finding in POTS \u2013 can be improved by exercise.<\/p>\n

The exercise situation in POTS, though, is complex. Because many people\u2019s POTS symptoms get worse during exercise or any activity that involves standing, they very naturally stop those activities altogether, which can lead to deconditioning and symptom worsening.<\/p>\n

Exercise\u00a0is\u00a0commonly used as a therapeutic intervention in POTS.\u00a0\u00a0That\u2019s not to say that exercise is easy to accomplish in this illness or that it works in all POTS patients. POTS patients are told at one clinic that it will take five weeks of exercise<\/a> before they\u2019ll feel better and that they will feel worse at first. That\u2019s obviously a tough gig. Why exactly it works isn\u2019t clear. (I\u2019ve been told that some researchers believe long-term exercise programs cause epigenetic changes in the immune response.) One study found 71% of POTS patients experienced a remission of their symptoms during exercise therapy, but almost 25% dropped out.<\/p>\n

Earlier Health Rising reported the story of a young man with infection induced POTS who found that iron infusions helped him exercise again. (He was unable to tolerate much exercise before the infusions.)\u00a0 The final step in that young man\u2019s journey to health, though, was a long-term stay at a Mayo clinic that featured, among other things, regular exercise.<\/p>\n

Have doctors been missing the boat on saline IV\u2019s and POTS?<\/strong>
\nThe authors of this study believe that the relief experienced after the IV infusions may have allowed the POTS patients to increase their activity levels, which then allowed them to improve further.\u00a0 (Exercise, interestingly, does increase blood volume). The POTS patients were not well; they still experienced symptom problems from their POTS, but their symptoms scores suggested their orthostatic intolerance, fatigue, weakness and other symptoms were much improved.<\/p>\n

This study has some significant limitations. Because no placebo-controlled group was present, placebo effects may have contributed to the patients\u2019 symptom reduction. The study group was also relatively young (average age mid-30\u2019s) and healthy (few other comorbidities).\u00a0 It\u2019s not clear if ME\/CFS\/POTS patients were part of the study or not.<\/p>\n

Because there was no attempt to assess exercise levels, no objective evidence backs up the authors\u2019 belief that IV infusions increased exercise levels, which then had additional positive effects. Because medication use was not tracked, it\u2019s possible (but not likely) that other medications contributed to their improved health as well.<\/p>\n

Saline\u00a0IV\u2019s Largely Ignored as POTS Treatment<\/strong>
\nDespite the blood volume depletion and several intriguing study results, saline IV\u2019s \u2013 even for temporary relief \u2013 aren\u2019t\u00a0 recommended or even discussed<\/a> in several POTS journal<\/a>\u00a0 and web overviews<\/a>.<\/p>\n

Time to Rethink Saline?<\/strong>
\nIs it time to consider regular use of saline in POTS and chronic fatigue syndrome (ME\/CFS)? Bigger and better studies are clearly needed, but saline IV\u2019s are cheap and safe (when PICT Lines are not needed).\u00a0 Because blood volume is low in ME\/CFS a similar result \u2013 a positive feedback loop resulting in\u00a0increased activity levels over time \u2013 might be possible.\u00a0 If increasing blood volume\u00a0allows more activity or exercise and if activity\/exercise in turn\u00a0increases blood volume then might some consistent improvement emerge?<\/p>\n

There are other ways to increase blood volume. Medow recently scored an NIH grant to assess the effects of oral rehydration solution in ME\/CFS\/POTS.\u00a0 The World Health Organization formula for oral rehydration solution <\/a>is stunningly cheap and easy to make.<\/p>\n

Check out more on measuring blood volume and blood volume enhancement<\/a> here. Plus check out our section on IV saline solution and more resources below.<\/p>\n

\u00b7\u00a0\u00a0\u00a0IV Saline Solution for Chronic Fatigue Syndrome<\/a><\/p>\n

Take the\u00a0Health Rising<\/em>\u00a0POTS and ME\/CFS Saline IV Poll<\/a>\u00a0\u00a0\u00a0Scroll to the bottom of the page<\/p>\n","protected":false},"excerpt":{"rendered":"

Health rising blog post by Cort Johnson, 15 April 2017: Regular use of saline may reduce symptoms, boost energy in POTS (& ME\/CFS?) ME\/CFS and POTS patients have used saline for years to feel better and recover from relapses. That\u2019s … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[618,3726,492,331,3725],"class_list":["post-12768","post","type-post","status-publish","format-standard","hentry","category-news","tag-cort-johnson","tag-low-blood-volume","tag-orthostatic-intolerance","tag-pots","tag-saline-solution"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-3jW","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12768","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=12768"}],"version-history":[{"count":2,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12768\/revisions"}],"predecessor-version":[{"id":12773,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12768\/revisions\/12773"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=12768"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=12768"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=12768"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}