Theresa made a promise that if she ever got better she would find a way to treat ME/CFS and FM patients.
The most common inquiry Health Rising gets is how to find a doctor with ME/CFS/FM expertise. Chronic fatigue syndrome (ME/CFS) has never had anything remotely approaching an adequate doctor base. With the Institute of Medicine report on ME/CFS finding that fewer than one-third of medical schools and less than half of medical textbooks provide any information on ME/CFS, it’s not hard to understand why.
Even when doctors know about the disease, they often, in the IOM’s words, “lack essential knowledge about how to diagnose and treat it”. With several longtime ME/CFS doctors retiring (Dr. Cheney, Dr. Lapp – thankfully replaced) or passing away (Dr. Lerner) recently, the need for younger practitioners to step up has never been greater.
It’s very good news, then, when a new practitioner joins the fold. The fact that this new doctor understands ME/CFS in an extraordinarily intimate way – she has it – is an added bonus.
Theresa Dowell DNP
In 2003 Theresa Dowell was a physical therapist in Flagstaff, Arizona when a hormone shot unexpectedly propelled her into a severe case of ME/CFS. Functioning, she estimated, at about 20% of normal, she went from helping people recover from injuries to not being able to do simple things for herself such as grocery shopping or seeing a doctor.
At some point, she bumped into somebody seeing Dr. Montoya at Stanford who was on Valcyte. She convinced a local Flagstaff physician to get her some, and then saw Montoya herself. She ended up being a Valcyte responder – a late responder, as it took 8 months before her body began to respond – but when it did, her physical functioning improved. Her cognition, however, remained in the dumps.
A Valcyte Interlude
The results from Dr. Montoya’s original 2006 Valcyte study were astonishing. Nine of 12 patients experienced a “near-resolution” of their symptoms. The results of the larger, more rigorous, 6-month follow-up study published in 2013 found only significantly different “trajectories” of improvement in cognition and mental fatigue – a huge change from the initial study.
An analysis indicating that patient improvements were increasing at the 6-month mark suggested that the second trial might have been too short. This wasn’t entirely surprising; Dr. Lerner said that it often took a long time for the drug to work.
The promise gave the ME/CFS community their first glimpse of the perils of relying on small clinical trials. After Valcyte, Synergy and Rituximab follow-up trials failed after producing excellent results in the earlier trials. So did two fibromyalgia drugs (Mirogabalin, TNX-102). The Japanese company was so sure of Mirogabalin’s success that it had 10,000 FM patients across the globe participate in its trial.
Equilibrant Works
A tissue biopsy at Dr. Montoya’s that found evidence of HHV-6 and a coxsackie virus sent Theresa travelling down south to our enterovirus expert – Dr. John Chia. Equilibrant – a Chinese herbal product Dr. Chia created and which Theresa is still on – made a big difference. Her sore throat disappeared entirely and slowly, slowly she improved.
A Bold Promise
As she’d struggled through the really dark three or four years in the beginning of her illness, Theresa made a bold promise to herself and others who were sick. If she ever got better, she was going to go back to school and learn how to treat people with these illnesses.
Medical school was out of the question – it was too tough – but a registered nurse practitioner (RNP) program was feasible. In Arizona, RNP’s can open their own practice and prescribe drugs – becoming one was her easiest and quickest shot at helping others.
Registered nurse practitioners, it turns out, can prescribe drugs in all 50 states. The latitude with which they can do so, however, is different in different states. In some states (California, Texas, Florida) RNP’s must have an agreement with a collaborating doctor to prescribe medications. Other states (Vermont, New York) require a supervised probationary period. In Arizona and other states (Colorado, Wyoming, Oregon) once an RNP has made it through their training they can hang up their shingle and start practicing.
The 1 1/2 year RNP program was tough. Theresa couldn’t do anything other than go to school and rest, but she made it through and then got accepted to Duke University where she received her Masters of Science in Nursing (MSN) and finished off a doctorate in the clinic-based Doctor of Nursing Practice (DNP). Since Theresa’s focus is on family medicine, she can treat chronic diseases like chronic fatigue syndrome (ME/CFS).
Theresa encouraged other RNP’s to open their own practices focused exclusively on treating FM and ME/CFS patients.
Eager to Learn
She started “shadowing” ME/CFS practitioners – observing them as they worked. After shadowing Dr. Montoya a few times, she turned to Dr. John Chia, whom she shadowed once a month over the next two years or so. Beside saying how gracious Dr. Chia is, she remarked on how darn smart he is, on his amazing ability to retain information, and how fascinating it was to observe him.
Her first hope was to open a chronic fatigue syndrome clinic within a larger organization. That hope was dashed (after a year long stint in an infectious disease clinic in a hospital) when the infectious disease doctor decided to tell her he didn’t believe in ME/CFS (!). (Reminding him that she had it didn’t change his mind.)
At that point, she decided to open her new practice but felt the need to learn more. A call to Lucinda Bateman, MD resulted in a week-long stint shadowing her and then follow-up stints every two to three months. She exclaimed at Dr. Bateman’s generosity and, like Dr. Chia, her knowledge. Dr. Bateman, she said, “knows this disease inside out.”
Theresa Dowell opened her “Four Peaks Health Care Associates” practice in fibromyalgia and chronic fatigue syndrome in Flagstaff in 2016 – not, it must be said, to much acclaim in the community. Confusion would be a better term, as local doctors and residents tried and failed to get their head around the idea of treating “fatigue”.
The news spread that northern Arizona has an ME/CFS/FM expert, though, and she’s become busier and busier and her waiting list is growing. As of June, her next new patient appointment was in October.
Her biggest advantage, she feels, is that she’s also a patient. She knows what other patients are going through, what their symptoms mean. Plus she’s created a network of ME/CFS experts she can go to for advice.
The local medical community has come around and she’s getting referrals from local doctors. She also has a whole group of physical therapists who have bought into the disease.
That crazy idea she had lying in bed a decade ago has borne fruit.
Eager To Learn
It helps a great deal that Theresa Dowell is obviously eager to learn. The only reason I know of her is because I kept bumping into her at conferences. My guess is that she’s been at every U.S. conference over at least the past five years. She and Dr. Kaufman were the only ME/CFS practitioners to attend the 2018 Dysautonomia International Conference. Last year, she and ten other doctors attended the Bateman Horne Center’s two-day “Clinician Coalition“.
Her next stop was Staci Stevens and Workwell Foundation to learn about cardiopulmonary exercise testing (CPET). After that she’ll attend the Open Medicine Foundation’s Stanford Symposium.
Treatments
None of her patients have been cured but improvements are common. She uses the Bateman model of looking at all the symptoms and then trying to address each one. She has more of a focus on supplements but will prescribe antivirals and other drugs when called for. (She does not prescribe opioids.)
Glutathione
Glutathione is an intriguing compound Theresa’s keeping a close eye on. Glutathione is the major antioxidant in the body. From Dr. Cheney to Rich Van Konynenburg, glutathione supplementation has a rich history in ME/CFS.
Dr. Shungu’s findings of high lactate and low glutathione levels in the ventricles of the brains of ME/CFS patients suggest: a) high rates of oxidative stress are present in the brains of ME/CFS patients; and b) glutathione is being overwhelmed. At the 2016 IACFS/ME conference, Shungu reported that 4 weeks of NAC supplementation (1800 mgs/day) significantly increased glutathione levels, reduced lactate levels in ME/CFS patients’ brains, and improved symptoms.
Theresa Dowell came to glutathione after learning about its possible effectiveness in Parkinson’s disease and finding it was, to her great surprise, effective for herself. (Decreased brain GSH levels are amongst the abnormalities seen in Parkinson’s). She reported that Nancy Klimas finds that it provides about 90% of her patients about a 20% improvement in fatigue and cognition. Most patients notice improvement in 6-8 weeks, but a three-month trial is called for.
Glutathione has to be provided intranasally, transdermally or via IV, but she believes IV dumps too much of it too quickly, causing adverse initial reactions. She prescribes compounded intranasal glutathione, 250 mg/ml, two sprays in each nostril three times per day. (Dr. Klimas uses the Key Compounding Pharmacy in Seattle). Calling it her baby research project, she said she was tracking its effectiveness in her patients and will have results later this month.
When the target in question is the brain, sinuses or upper respiratory tract, intranasal glutathione may be more effective than other forms as that form of administration provides easier access to the brain. It was apparently first used in 2003 for multiple chemical sensitivity. Since then it’s been tried in several central nervous system disorders. One study found dramatically increased levels of brain glutathione shortly after administration. One review which found it to be safe, stated intranasal glutathione is:
“inexpensive (∼$50/month), can be self-administered, and may be a novel method of directly reaching target tissues of the respiratory tract and central nervous system.”
As to her health, Dr. Dowell describes herself as “functional”. She’s still on Equilibrant and feels like she’s still improving. Her sleep, though, is still not refreshing. (It would be nice, she said, to experience refreshing sleep (just once :)). She can do light exercise but anything that causes her to break a sweat puts her into a flare. She’s a work in progress…
Any new additions to the ME/CFS/FM practitioner field you’d like Health Rising to highlight? Please let us know.
The 2018 Dysautonomia International Conference
The Nashville conference provided a gold mine of information, inspiring new insights and the below articles. (One more article on IVIG in ME/CFS/FM and POTS is coming up). The upside was a lot of learning; the downside was travel expenses which Health Rising has hardly begun to make up. Conferences provide the latest research and treatment findings and important networking opportunities, but travel is very expensive for a small organization like Health Rising. If you find conference reports helpful, please support Health Rising.
- 2018 Dysautonomia International Conference I: Small Fiber Neuropathy, POTS, MCAS and Vagus Nerve Stimulation
- The 2018 Dysautonomia Conference Pt. II: Could You Have a Spinal Fluid Leak? An ME/CFS, POTS, FM Perspective
- Dysautonomia International Conference Pt III: The Autoimmunity Revolution in POTS
- “Sticky Blood” – Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome and Fibromyalgia – The Dysautonomia Conference #4
- Stagnant Hypoxia – Where Chronic Fatigue Syndrome and Hyperadrenergic POTS Meet?
- Promise Fulfilled – A New Chronic Fatigue Syndrome / Fibromyalgia Practitioner Steps Forth
Reverse glutathione? I’ve never heard of that.
I’ve have heard of reduced glutathione and liposomal glutathione.
Does anyone know what this is?
Blaine, I’m familiar with Liposomal Glutathione too. The product is developed by Dr. Chris Shade of Quicksilver Scientific and is a superior product used in addition to other products developed for his safe Mercury and heavy metals chelation protocols. It’s approx. 40-50 Dollars available through QS’s website or Amazon.
I forgot to mention it’s dispersed sublingually and due to it’s nano-emulsion quality is delivered instantly.
Could anyone supply the name(s) of a doctor in NC or SC? My Dr is getting ready to retire. I live near Charlotte, NC. But I cannot afford to see a Dr that doesn’t take Medicare Insurance. I live on a very limited income/disability. Thank you. pmmelchor@yahoo.com
I saw a lot of information on this topic shared on the Facebook group #MEAction North Carolina. Find the discussions on this on that site. I just remember someone in the Charlotte area shared.
There is a product out there that is used cosmetically called reverse glutathione but I was unable to find anything else. Perhaps my notes were wrong.
My sense from our conversation was that the most important thing was that the glutathione was delivered intranasally. I checked out several intranasal glutathione sprays and didn’t see anything regarding reversed or reduced. Until I hear from Theresa I’m going to remove the ‘reverse’ from the blog and emphasize that the intransal formulation aspect.
A Parkinson’s study showed that it does get into the brain and substantially (as in 2 x’s higher) raise GSH levels there when delivered that way. Both Shungu’s studies and evidence of neuroinflammation in the brain suggest that increasing GSH levels there might be a good idea.
I came across this video explanation of Dr. Chia’s results with ‘Equilibrant’ that Theresa Dowell is still taking. Just fascinating. Has anybody here tried it ?
https://www.youtube.com/watch?v=fXTX6n1Y8LY
Cool – thanks for posting that! I will put it on Health Rising’s Equilibriant page. Oxymatrine (Equilibriant) is fascinating. Not only does it appear to have antiviral properties it also appears to be help with blood vessels and the cardiovascular system. I don’t know why I haven’t tried it yet actually.
Where does one get intranasal glutathione?
I’d like to know if she has looked into B12 injections with so many symptoms the same as ME/cfs?
My daugther gets great benifit from B 12 injections. She gets them from her doctor frozen and keeps them in the freezer or themos bottle for travel. B12 is unstable at higher temperatures so this is important.
She injects herself freely as needed, just like a diabetic would with insulin.
She gets a very quick response in energy rise but has to be careful that she doesnt overdo it and induce a crash so it is wise to be a bit cautious but io think of it as pouring water on a wilted plant.
I think I get more excited these days about a new doctor interested in educated in ME/CFS than I even do about a hopeful new treatment! Thank you. Cort for writing this up.
I too would be more interested in this intranasal glutathione. Is it “supplement” like that we could try ourselves? I see sprays on Amazon that are for the mouth, but they say you can buy a nasal sprayer and use it in the nose. I don’t want to jump and do something stupid, so maybe you could explore this topic a bit more for us?
Thank yiu! Your work is highly appreciated!
I don’t know much about internasal glutathione either! I will try and get in touch with Theresa and find out what brand she recommends.
Thanks so much Cort for sharing Theresa’s story with all of us! We are so lucky to have your writing skills in our community.
I would definitely be curious what brands Theresa recommends (or if it’s prescription) – please do share if you’re able to! 🙂
It’s from Key Compounding Pharmacy as noted in the article. You do need a doctor to prescribe it.
During this summers extreme heat I learned a new trick for myself: how to use cold for better regeneration.
It’s nothing new, but I did before find cold/heat treatments to be confusing, hard to predict and often random in its effects good or bad.
During previous years I did learn:
* The importance of good hydration. We easily get dehydrated in hot weather. But during this excessive heat I drank so much that I had to pee large volumes a day so I guess that I didn’t had dehydration.
* The importance of good breathing. But in the past year and a half I made great progress in practicing and improving breathing efficiency. I felt this summer few impact on my breathing. During the night, when ozone levels are down my exhaustion and confusion was still truly excessive compared to normal weather.
=> So my two usual suspects didn’t seem to cause my strong troubles with this heat. My body temperature was normal (didn’t measure it but in house I did not even sweat a lot) so I wasn’t overheated.
My head *felt* like it was truly overheated (without being remarkably hot). At the start of this summer I’ve been working (and posting) on my ideas about ME patients having truly excessive oxidative stress. That consumes plenty of glutathione.
I believe this very high glutathione consumption requires very high NADPH regeneration rates, far in excess of what is needed in healthy people. When NADPH falls too low, NADH/ATP generation has to be shut down as generating NADH is a very oxidative process.
Therefore excessive oxidative stress indirectly sends the body in a mode that it deliberately must shut down both glycolisis and the NADH generating part of the Krebbs cycle and switch to maximum usage of the NADPH generating pentose phosphate pathway and the NADPH generating part of the Krebbs cycle. That may explain why trying to fix our energy production backfires so often. That could also help explain why the sickest of patients have a very high caloric need: maybe they invest huge amount of calories into producing NADPH rather then ATP? That, and poor digestion.
As a former hypothermia patient I know forcefully upping my body temperature or trying to strongly stimulate my blood flow resulted in almost immediate strong upflaring of inflammation. So my body seems to be trapped between having to burn plenty of calories and keeping its temperature down. Hence the logical solution to me was: cool it down considerably.
At those days outside temperature was 35°C+ (with body temperature 36 to 37°C) I filled my bath tub with 5 cm (about 2 inch) of cold water and slowly laid in it. First feet and bottoms, then legs, then feet and back without legs… Just to reduce the cold shock on blood vessels and hart. And no more water in order to limit the cold shock and prevent drowning in case it overwhelmed me. So heat was removed gradually by using time over icy temperatures.
The effects were more then good. It was more then just refreshing. At first it took some courage but after 5 to 10 minutes it felt actually nice. Energy flowed back into my body. I also made my head and hair a bit wet so my brain cooled too. I was much less confused.
I did so a few times a day when the heat was at worst. After these days I kept my head dry. And went to two times a day. Even then, my heat just became clearer each time, just less spectacularly. I strongly doubt it was the drop in blood/brain temperature that is the cause. Rather I believe it is cooling the muscles that allows to create plenty of extra NADPH. Muscles are prime producers of NADPH. Note that men have a higher average ratio muscle to body weight then women, so they have a natural higher production of NADPH. And higher testosterone levels are linked to being less prone to ME as well as to higher muscle mass.
Later I did two showers a day with slowly flowing water a bit above room temperature. Or mixed some other cold sources, like sleeping with less clothes or sheets. It makes it a bit harder to fall asleep for me and I have to increase clothing/sheets in the middle of the night but it works well. Cooling the head “the old Chinese way” works better for me than those cold packs. The old Chinese way is to drink room temperature water and “chew on it until it becomes solid”. Next to generate saliva that helps the gut it’s an excellent way to cool the head.
The best? It clearly increased my week-to-week rate of improvement ;-). I also am a lot less prone to the common cold, a strong weakness of mine. Now I can get outside in normal summer weather without looking like I’m dressed for fall and still get a cold. I think it’s all due to activating the NADPH generating pathways. As the pentose phosphor pathway is the main source of it I guess it’ll work best for people on a non-keto diet with sufficient slow carbs. As converting excess glucose to fat is a main consumer of NADPH, I think keeping blood glucose levels on a moderate level all day and night is important too. So no spikes during the day and preventing strong dips during the night.
Biggest disadvantage: increased muscles sourness from my FM part. So before “exercising” I have to do a small warm-up every time to prevent “soft injury”. But over time it tends to improve my FM a bit too, just not as clear as my ME.
For my ME it has a lot of the advantages of exercising and feels as “healthy exercising” without the clear disadvantages. Stimulating my blood flow previously failed, now a slow improvement in blood flow is probably a free gift with the technique.
As to how much: I feel if my body doesn’t warms up itself and I don’t feel better shortly after the cold treatment, it was not good. So for some that may be only dipping feet shortly in a tub of water.
I’ll be writing about it in the forum too. Guess the “why it is better to sleep in a cold room” topic might be best suited?
Dejurgen thank you for sharing your experience and thoughts with regards to NADPH and cold. I have been researching the link between NADPH availability, glutathione recycling and high glutamate levels for the last couple of days but never made the link with bodytemperature. NADPH levels may explain why glutathione supplementation makes me feel less cold shortly after but more cold a couple of hours later. Possibly because there is not enough NADPH to recycle oxidized glutathione which would lead to glutathionylation (and inhibition) of enzymes involved in energy production . I will start trying cold footbaths to support glutathione recycling Thank you once more for this tip!
Thanks for mentionning glutathionylation, never heard of it before. If I get it wright from my quick search, glutathionylation uses reduced glutathione to add to proteins. Thereby it protects them from irreversible oxidation and changes their properties/actions.
That sounds like a buffer taking up surplus glutathione if any existed after a quick release glutathione shot. The reversible aspect would act as a buffer flattening peaks at administration and reducing dips in the “aftermath”. I guess that would be a reasonable good thing and happen in the first short phase of feeling better at first glance.
Your temperature thing may depend on availability of oxidative stress (following the reverse of glutathione peaks and dips), producing HOCL; in bacteria that shuts down respiration and glucose oxidation and doing other nasty stuff.
The really interesting part of your response is the “…hours later…” thing. That may give me an answer to following question I had:
* upping glutathione temporarely strongly boosts both glutathione and the ratio reduced to oxidized gluatathione
* the ratio reduced to oxidized gluatathione is *very* important for proper anti-oxidant functioning
* when this extra reduced glutathione is used, it would convert to a glut of oxidized glutathione if glutathione recycling rate remains the same; that would sink glutathione anti-oxidant powers significantly below the already paltry low anti-oxidant powers before the glutathione shot
=> my questions were:
* would/could this really happen (long term effect of IV glutathione is debated)?
* how fast would it happen?
Your answer seems to indicate that glutathione turnover ratio in ME patients is *huge* and in your case this effect happens in mere hours.
=> That probably explains why results of IV glutathione are not as good as hoped long term in many patients
=> That may also indicate why this doctors/nurse “slow” release approach is better: lower peaks and more time to remove/burn oxidized glutathione
=> Spreading a single slow release dose over multiple moments a day may further improve success rate; are there slow release skin patches? anybody experiences with it?
=> It may also explain Rich Van K’s success with a protocol to increase indigenous glutathione production: that’s near even spread production over 24 hours
=> That’s why I still believe in NADPH/glutathione recycling as a cheap and potentially even better alternative.
=> I also believe that NADPH/gluatathione dips are an important thing in unrefreshing sleep. Would sleep refreshing be one of the symptoms best improved with keto diets? Any experiences on it from our keto friends?
Thanks for all the info ;-).
As to the cold thing: I do consider self heating after it to be important. No rubbing, sitting near the fire place… and it works better on hot days as one has already reduced “heat-loss” margins. It also helped that I have done a few gentle circulation exercises spread over the day for over a year (for enabling self heating). Starting with the feet is a good idea: by wearing shoes all day they’re often above “natural temperature” most of the day. It further restricts feet and lower leg muscle movement. For a body part that is hit by gravity worse then legs that doesn’t promote good health/blood flow. Note: I don’t directly try to improve blood flow! Bad experiences with it.
Dejurgen, a thought about glutathione recycling issues, unrefreshing sleep and insomnia: Glutatione oxidation could lead to NADPH depletion, leading to NADH depletion, leading to tryptophane being shuttled into the kynurenine pathway, leading to a dip in serotonin and subsequently melatonin. 5-HTP supplementation could support the body with glutathione recycling via increase of the NAD and NADP pool (as does supplemention with Nicotinamide Riboside). This helped me so far but not enough (and may not be applicable to everyone!) I started looking into the role of too high levels of glutamate amd alpha-ketoglutarate in the body. When other compounds are converted to glutamate or alpha-ketoglutarate, then NADPH is generated which is needed for glutathione recycling.
Look into pyruvate and AMPK in regards to ME/CFS.
You will find a lot of similarities increasing AMPK and what you’ve found to help.
Copied from above, “Shungu reported that 4 weeks of NAC supplementation (1800 mgs/day) significantly increased glutathione levels, reduced lactate levels in ME/CFS patients’ brains, and improved symptoms.”
If NAC worked so well why is it now being ignored for glutathione production? Thank you for your input.
I was thinking the same thing. It sounded in the article like Dr. Klimas is using the NAC but was it referring to the intranasal gluthathione and not the NAC?
Dr. Vera, one of the clinicians that works and doctor Klimas’s clinic, prescribes intranasal glutathione. I know a patient of hers who was prescribed it.
I was prescribed intranasal glutathione by Dr. Klimas. It came from a compounding pharmacy in Texas. It has to be kept in the refrigerator. I didn’t last very long on it because I’m very sensitive to smells and glutathione smells terrible. Plus when it’s cold it’s awful. I’ve also been on Equilibrant but didn’t notice any improvement. I know my problem is that I give up on things too early and that it takes a while to notice improvement. I’m back on Valtrex because my cytokines improved even though I didn’t notice an improvement in 2 months.
@Dana ” Plus when it’s cold it’s awful.”
What do you mean by that? Does it taste or smel awful when the glutathione itself is cold or does it make you feel very bad when it’s cold weather?
The glutathione is refrigerated so when it’s sprayed into your nose it’s a little painful.
I don’t think it’s being ignored. I think people are trying different things. NAC may work very well, it may be all you need, but since it is a precursor, it makes sense that if you can get the real thing into your system easier with an intranasal spray it might work better.
I guess it depends on which one you prefer to try.
Just would like to share my experience with you all. Dr. Montoya clinic’s treatment did nothing on me. My appointments were with an NP. I couldn’t figure out what clue they got from all the lab tests. All researchers should provide big data analysis. Onesie twosie hearsay are just misleading.
Dr. Montoya has a lot of experience but you might want to check out Doctor Kaufman in Mountain View as well. You probably have most of the tests you need done so it wouldn’t be as expensive. Kaufman seems very up on everything and has gotten some really good reviews.
I have tried oral NAC in the past but found that even doses of 600mg did not agree with me and felt nauseous after each dose–even with food.
Regarding the internasal dosing, I’m wondering if dissolving NAC capsules into a neti pot and doing a version of nasal cleaning (but tilting ones head back to hold the infusion in the nose and sinuses for a minute or two) might work. I’m too worried about it causing a sinus infection to try it without confirmation–but maybe it would work…
I did nebulized glutathione for a while. It was reduced glutathione mixed with baking soda at about 4:1 and dissolved in saline. Very cheap!
Cheap is good! Glad to hear that.
Did it help?
I too would love to know where to get the internasal glutathione.
Very cheap is good, but did it work?
If you tried a more conventional glutathione treatment, were results different?
Cort, thank you for writing all these articles. You have a way of making things easy to read no matter how simple or complicated the subject.
Thanks. Writing them helps me understand the subject better that’s for sure. (Now if I could only retain what I read and wrote….)
Cort–:-) I can certainly identify with that as many others here too most likely! I enjoyed this post– very helpful, thank you.
Uhm, reading my comment and the responses back with a clearer mind today….maybe ‘topic’ would have been a better choice of words than ‘subject’….. 🙂 🙂 🙂
Gosh, here I am thinking I got the English language down, clearly not entirely. Had a good laugh just now. Anyway, looking forward to your next article Cort and yes Lynn, enjoyable would be a good description :-).
In doing a quick google search, I found one brand of intranasal glutathione that you can buy without a prescription. Otherwise, you have to get it from a compounding pharmacy.
For more information on glutathione, and there is a link in the post to a compounding pharmacy in Florida that makes the intranasal spray, see this blog post by Sue Jackson. http://livewithcfs.blogspot.com/2018/02/great-news-glutathione-now-available-as.html
Here is another pharmacy you can get it from with a prescription:
https://www.woodlandhillspharmacy.com/compounds/other-compounds/glutathione-spray/
You can buy it here directly, but it is more expensive and it has 2plant essences which may be problematic for some people:
https://glutagenic.com/product/glutaquick-nasal-spray/
Dr. Vera who works with Dr. Klimas – has compounding pharmacies make it. In the U.S. I know they recommend Skip’s Pharmacy in Florida.
How did Djunga get 1800 mg of NAC into people? That’s one heck of a lot. I can’t imagine getting it through pills.
Cort, thank you for sharing Theresa Dowell’s story. I am very interested in supplementation therapy for my fibromyalgia. If, I am not mistaken, glutathione, an antioxidant, is a tripeptide: derived from glutamic acid, cysteine and glycine. One of the aforementioned amino acids glutathione is derived from, glutamic acid and is closely related to another amino acid, glutamine, in a chemical sense. I currently use L-Glutamine for digestive and neurotransmitter heatlh. It works wonders for a few of my fibro related symptoms. I understand L-Glutamine is NOT glutathione. Since I don’t know much about glutathione, and am interested in using it, I have two questions I was hoping you or Theresa Dowell could answer for me. Can I use the antooxidant Glutathione in conjunction with the amino acid L-Glutamine? The second question I have involves a concern and possible misperception I may have about glutathione. Is monosodium glutamate derived from one of the building blocks of glutathione that I mentioned earlier, glutamate? Growing up as a kid in the Bay Area, I was always told by others to stay away from MSG, an ingredient often found in Chinese food. I don’t understand the complete molecular chain and structured relationship between antioxidants and amino acids yet. However, all I know and that I can sincerely attest to is that a recent combination of amino acids, vitamins, mineral, herbal supplements, and an anti-viral medication is helping me to exponentially combat my fibromyalgia and fatigue. Any data you may have in response to my questions about glutathione would be greatly appreciated. Pending your feedback. Just to reiterate, thanks for what you both do and thank you so much for sharing! 🙂
Chris – I am glad you have found what helps with fatigue that is making me more and more bed bound. The combination was given to you by a Dr.? and what are the supplements and vitamins you are taking?
Faf,
First, let me start off by saying that I hope you get better. The antiviral therapy I use was provided by a fibro specialist in AL named Dr. Skip Pridgen. Dr. Pridgen is working on a new FMS drug that is both antiviral and anti inflammatory. It is very promising and is in its final FDA approval process right now. One of my doctor’s signed an NDA to get the combo from him. Look Dr. Pridgen up on Google to get more data about this. I believe his website is called Inceptive or Innovative Concepts. I currently see 8 different specialists for my Fibromyalgia and suspected ME. I had a very loose diagnosis of ME in 1996 and I was formally diagnosed by a rheumatologist, a neurologist, and an infectious disease doctor with Fibromyalgia starting in 2013, three separate formal diagnosis if FM between 2013-2017. I am very fortunate to have medical insurance that covers my treatment. I spent 26 years Active Army and have 5 years of combat time, to include multiple tours in Iraq and Afghanistan. I don’t mention my insurance coverage to throw it in peoples’ faces, rather; I do this to emphasize a point. All my doctors are great, however; they all emphasize managing the illness as opposed to treating the root causes and beating the disease. As you already know, it is disheartening, devastating, and discouraging to have an illness that is defined via idiopathic symptoms. The unknown cause of my illness is killing me. So…. I decided to try a holistic approach to healing. I was previously on 14 different pharma medications to treat my fibro. I slowly, under doctor supervision, weened myself off of all of them. Please do NOT attempt this yourself. I am NOT a doctor. I am a Soldier. We all have different case histories. We all experience different levels of severity when it comes to our illness, whether it is FM or ME. And we all have unique biological makeups to include our: brain, gut microbiome, and immune system. Below is what I am currently taking supplement wise. It is working wonders for me but it is still too early to tell if it will help long term. And… to use the following analogy- supplementing for me is like putting fuel in an auto. This is the best way I can explain my experience so far. The gas runs out eventually but when it is running, oh my… Just to reiterate: This Is Not Medical Advice. And… you have to take these on an empty stomach between meals. Free form pharmaceutical powder is the best form. I do not buy products that combine supplements because I cant verify what is in them. I only buy from sources that have a legit reputation, that I trust, and that are health based businesses as opposed to bodybuilding type stores. Each amino acid or vitamin serves a unique purpose and targets the three areas I mentioned earlier. A few target the circulatory system. A good web site that I recommend that provides an extremely specific and detailed report of each ingredient is examine.com. There is also an excellent “amino acid therapy chart”. I found for free via Google images. You can always look me up on Twitter @spartan36 if you need to just talk to someone. The only reason I have that Twitter account is because of my illness. I don’t do FB. My wife will tell you I’m not big on social media :). However, I want to help people with moral support and to personally get help from others who are out there and are experts in their field, patients with stories to tell, or disseminators of information like Cort. So I am learning to slowly like social media :). My aologies Cort for the long thread. I’m just trying to help. Faf please see below:
L-Tyrosine (500 mg twice daily)
L-Argine (600 mg twice daily)
L Citruline (225 mg three x daily)
Menthylcobalamin B12 2500 mcgs (MICRO grams) twice daily
CoQ10 100mg twice daily
Glutamine 5 grams twice daily
Oligofructose 4000mg twice daily once before breakfast, once before dinner
L-Theanine 100mg 3 times day
L-Lysine 500mg before bed. Do NOT take this if you are taking an antiviral med that fights either EBV/VZV/HSV or Cytomegalovirus or HHV6.
600 mg Magnesium (MALIC form) night
1 mg Melatonin night
2.88 Malic Acid once a day
L-Proline 500 mg twice daily
Milk Thistle 175mg twice daily
There are some herbs I also take but I don’t want to mention them because they may potentiate differently for you.
Do NOT take any of these supplements if you are currently taking SSNRIs or any other type of prescription medication that targets neurotransmitters reuptake inhibition. In fact, do NOT take any of these supplements without clearing it first with a qualified MD first. Beware of anyone using a “PSCD” title in place of MD. These guys are predators and will take your money. PSCD stands for Pastoral Science Certified Doctors. We have a lot of these salesmen in Texas. If you do decide to supplement then start slowly. I also recommend that you get a complete metabolic workup every month. All my doctors know I take these supplements and they monitor me very closely. You have to keep a close eye on your liver, kidney, gallbladder, and urinary tract anytime you supplement with amino acids because of the high amount of protein that your body will process as a result of the absorption. These building blocks cause a lot of ammonia that needs to be excreted via the urea.
Finally, I encourage you to do extensive research on each of the aforementioned supplements. It is your body Faf. Before I started my journey, I did a lot, lot, lot, lot, lot of research about what I was going to put into MY body. Well, brother or sister, I hope this helps. Never lose hope faf. Never let others doubt the severity of your illness. Find doctors that care. If you can’t afford these doctors thaen find a friend. I’ m always available if you need me. Cheers! 🙂
Hi Chris, why do you say to not take lysine if you may have hhv6? I thought that extra lysine inhibits HHVs.
Ruth,
Hi. You are absolutely correct. L-Lysine does indeed inhibit HHVs (to include HHV6). I recommended not to take L-Lysine under one condition, that being if you are currently taking anti-viral meds (specifically those that already target HSV replication). Personally, I am hesitant to use L-Lysine in conjunction with prescibed anti-viral meds beause I don’t know if an interaction can occur that may potentially affect the prescribed dosage. I apologize for any confusion and for speaking a little too emphatically. On another note, I forgot to mention that I also take Branched Chain Amino Acids. BCAAs help me to substantially combat muscle pain and fatigue. Most people take BCAAs post workout. I can’t do much exercise right now but I still take them at specific intervals twice a day on an empty stomach to regulate pain. Wish you well. Thanks for listening. ?
Hi Chris, firstly thank you for serving your country.can I ask…,we’re you one of many soldiers that got mandatory
Vaccines? And..,how many did you get, if in fact you did?
Surely you are aware of gulf war illness?… which is identical to me/cfs as far as symptoms goes
Hi Chris, congratulations on finding a good combination of supplements that work. I don’t know what the building blocks of glutathione are but I never heard of it mentioned in combination with monosodium glutamate. I don’t think that’s a problem. Continued good luck with your search for health!
I see several people were asking about intranasal glutathione. Most of the top ME/CFS experts in the US are now prescribing it instead of intramuscular injections. Our doctor, Dr. Susan Levine, said – as stated here in the article – that it is more effective when administered through a nose spray. Watch out for any that you find online – if you search “glutathione nose spray” on Amazon for instance, what comes up are a bunch of mouth sprays – which are useless since the pH of the mouth destroys the glutathione.
Glutathione as a nose spray can be ordered from a compounding pharmacy. Skip’s in FL (well-known in our community for compounding LDN) is one provider. What we get from Skip’s is 100 mg/ml.
Here is a blog post I wrote about glutathione with lots of ways to supplement it and increase it – the note at the end has details of the nasal sprays:
http://livewithcfs.blogspot.com/2017/03/increasing-glutathione-in-mecfs-related.html
Hope that helps a bit – it is working well for us!
Sue Jackson
Thanks Sue! I’ll link to your blog on HR’s resource glutathione resource page.
Thanks for mentioning Skip’s. It’s got a great reputation.
Thanks Sue…my daughter used to take nebulized glutathione…and yes…the results were amazing (more speech, etc.)…if compounded…I would prefer a spray if it was ever possible. I read the direction for the liposomal…I don’t think I could get her to hold it for 30 seconds in her mouth….sigh
This is EXACTLY the connection for my husband (CFS) and my daughter with special needs (epileptic-connection HHV6 and responded to antiviral therapy…seizure meds removed)…this is the treatment that my hubby needs since we know that our daughter responded. She had Roseola and Cocksackie viruses as a baby/toddler…did the bloodwork for husband as well.
I was diagnosed with CFS/ME in 2008 after working full time and caring for both of my parents since January, 2002. I suspect that it was a 2nd flare and that the first was in 1975 but went undiagnosed. In August 2009, I went to a functional medicine doctor, an MD, who thought he’d have me “turned around” in 6 months. After 1 and 1/2 years of treatment, he declared me a “difficult case.” Only after I started IV glutathione with methylated B vitamins did I get any energy back. The first few times were brutal–I passed out the first and had to have a reduced amount the 2nd time. But he finally figured out the right dosage, and I got a series of 10 infusions, one week apart and now monthly. This treatment has gotten me out of my apartment and back into living. Nothing else helped. Of course, I take methyl or hydroxy B12 shots a couple times a week and other supplements, but the IV glutathione has been the key to my recovery. My MD carries the liposomal variety, but it does nothing for me. I’ve never heard of or tried the intranasal type. It sounds promising for a between treatment pick-me-up. Thanks for sharing this information, Cort. I wish Theresa the best in her new practice and appreciate the information about Skip Pridgen from Chris. I have friends with fibro who may be helped by him.
I too was somebody who doctors thought would be a relatively easy turn around. 30 + years later I’m still waiting for that turn around! Thanks for sharing your experiences with intravenous glutathione.
Nowadays everyone wants a doctor with ME/CFS/FM expertise. But everyone is not able to afford the costs of their treatments. In such case the seniors can take the health insurance plans from the company like The Health Exchange Agency https://www.thehealthexchangeagency.com/mutual-of-omaha-plan-f, which guides and provides the health plans with deductions.
This is an older link I came upon when reading about the nasal Glutathione. I just want to mention that EquilibrI ant from Dr. Chia did not help me at all.
Hello. I am Helen, a 67-year-old diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I live in a small town with no access to medical treatment for CFS. Dallas, Texas is one hour away; Temple, Texas is thirty minutes away. Do you have medical staff near these locations that treat CFS?
My email is helen.arnold.@gmail.com.
Please add me to your email list.
Thank you.