It was looking really good for a while!
It’s been a tough couple of years for drug trials in fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS). The rapid approval of three drugs (Lyrica, Cymbalta, Savella) in the late 2000’s made FM seem like a good bet.
Four years ago the future looked bright. A pharmaceutical source predicted four new drugs (a new Flexeril, a better formulation of Lyrica (mirogabalin), an NSRI (SNRI) called TD-9855, and a time-release formulation of Lyrica) would be approved for fibromyalgia by now. (They were only off by four.)
Meanwhile ME/CFS had Rituximab and the Synergy trial going for it. All of the drugs bit the dust – some in spectacular fashion.
First came the TNX-102 failure and then the astounding collapse of mirogabalin.
Flexeril Reformulation Fails
An updated form of Flexeril, TNX-102 looked like a sure bet. The new sublingual format shot the drug straight into the body, allowing a significant reduction in the dose, and bypassing the problems that were relegating Flexeril to short-term use. Tonix – the drug’s manufacturer – was so confident that it reportedly started its phase III FM trial before the phase II trial had even ended. Refreshing sleep and reduced pain seemed to be on their way for FM patients.
The phase III trial did show benefits but failed to meet its primary endpoint – reducing pain significantly in at least 30% of the people taking it. Tonix’s stock price plunged by 70% on the news, wiping out $30 million in shareholder value. Its interest in FM apparently over, Tonix reported that it would try again with PTSD.
Daiichi’s Doomed Effort
Hubris appeared to have struck again with Daiichi Sankyo. The Japanese pharmaceutical was so confident in its more supposedly more effective, safer and longer-lasting formulation of Lyrica that it embarked on a global series of trials involving over 3,600 patients in 300 centers. Yen, dollars, Euros and who knows what other denominations were no doubt dancing in the Japanese pharmaceutical giant’s head as it contemplated taking over Pfizer’s $5 billion/year Lyrica market.
Instead the drug didn’t meet its mark and Daiichi pulled back from fibromyalgia – but not from other pain conditions. (See below.)
Rituximab’s Resounding Failure
Likewise, the Rituximab trial hopes in ME/CFS ended in spectacular fashion when the ME/CFS community learned to its dismay that substantially more patients benefited from the placebo than from the drug – which also had high rates of side effects to boot. (Then again, so did the placebo group – which shows that bad things are happening all the time to some people with ME/CFS.)
Synergy Sinks
Then Synergy ME/CFS trial (methylphenidate+supplements) failed in a different way: response rates were good, but the rates of placebo effectiveness were so high that the drug/supplement combo failed to produce significant results.
Brindcifovir Bombs
Just this year Brindcifovir – a new injectable version of Vistide – was supposed to be God’s gift to people with herpes virus infections. After the initial trial of transplant patients failed to reach its endpoint, the drug was thought to be wounded but not mortally stricken. This year, however, Chimerix, citing an inability to enroll enough patients for its latest trial (!), pulled the plug on Brincidofovir entirely and laid off 40% of its staff.
Phase III trials are clearly a tough gig! The news was not all gloomy, however. Like Lazarus rising from the dead…
TNX-102 is Back! Tonix’s Sleep & Pain Drug to Begin Fibromyalgia Trials
Ten days ago, Tonix announced that it wasn’t done with fibromyalgia after all. Citing the success of its PTSD trials, a promising re-analysis of its fibromyalgia study data, and the strong support from the FDA, Tonix announced it was back in the fibromyalgia drug creation business. (Thanks to Daniel for the tip :))
TNX-102 had not failed completely in it’s first phase III trial. It had shown benefits – particularly with sleep – but hadn’t met its crucial primary pain endpoint. Tonix reported there’s an easy way to fix that problem – simply double the dose. That doubled dose worked just fine in its PTSD trials – and relieved PTSD patients’ pain to boot. Only minor side effects showed.
The company couldn’t stop itself from gushing about how on board the FDA was with the drug moving forward.
“The FDA’s acceptance of the well-established safety information of currently-marketed oral cyclobenzaprine products and their agreement that TNX-102 SL 5.6 mg long-term exposure data from our PTSD studies may support the fibromyalgia indication are very reassuring.
“We have extensive clinical experience and data collected over the past seven years with TNX-102 SL in fibromyalgia and PTSD studies. In addition to the synergy between these two development programs, we are very pleased with the FDA’s clear guidance and support to help advance our lead product candidate, TNX-102 SL, in fibromyalgia and PTSD toward NDA approvals.”
With its ability to potentially effect two major symptoms in FM – sleep and pain – TNX-102 certainly is an enticing drug. Tonix said it would be submitting plans for the next trial to the FDA soon.
Mirogabalin Making Headway as Well
Nor did Daiichi pour God knows how many yen into mirogabalin just to walk away. It’s drug – called Tarlige – has been approved for neuropathic pain in Japan, and clinical trials into neuropathic pain and post-herpetic neuralgia have been successfully completed. The drug will probably make its way to the U.S. at some point – not for FM – but perhaps for the neuropathic pain often found in FM.
Daiichi is also giving Heptares Therapeutics $12 million to discover and develop small-molecule drug candidates that target G protein-coupled receptors (GPCR) for pain. These appear to be the same receptors involved in the new migraine drugs that are hitting the market.
Synergy Not Necessarily Sunk
Synergy is not necessarily sunk either. A re-analysis of the data suggested that the drug may have work better than believed – particularly in the worst off patients. Whether money can be found to mount another trial is another question.
Pridgen’s Drug Combo Reportedly Still Moving Forward
Pridgen has apparently failed thus far to convince funders to back the phase III trials needed to push his antiviral drug combo forward. When last heard from, though, Pridgen is moving forward with another phase II trial planned.
Conclusion
Tomnya (TNX-102) could break the string of high profile drug misses for FM and ME/CFS
Despite the failures of the past couple of years the good news is that the drug that people with fibromyalgia probably most would have wanted to succeed – TNX-102 or Tomnya – which Tonix reports can help with both sleep and pain is back into clinical trials. Plus, after several strong trials, mirogabalin will probably show up on these shores at some point as well.
Next check out a long list of future drug possibilities and a look at the clinical trials underway (or soon to be underway) for ME/CFS/FM/POTS and other fatigue and pain disorders.
Help us we are millions in so much pain.
The good news is that I think drug companies do know that. They’ve seen Lyrica – a drug which is not effective in many – and which often has side effects – bring in billions of dollars a year. A huge market for a good pain drug is out there.
I imagine that Tonix, which has already done a phase III trial in TNX – can get the next one ramped up pretty quickly.
Check out the next blog as well for future pain reducing possibilities and have hope – there is a huge need for better pain drugs.
Is tonix availeble at the international drug marked yet? I think every person with severe ME has a grade of PTSD and wouldlove some sleep 🙂 But I cannot find the name / brand in the (norwegian) medicine overview.
Thanks ❤❤
I agree! I don’t know how you can have this disease and not have some “PTSD”. I don’t believe it has been approved for use anywhere yet, though. Stay tuned, though, for a look at cannabis products that can help with anxiety, hopefully PTSD and pain as well. 🙂
I will stay tuned! Always ???
And we may not have PTSD but cronic-TSD ?
Hope IVIG and CBD oil can give some relief wating for CD38 / TNX102 or any given numer/letter-combination that can provide some real improvement
I have severe ME and high anxiety possibly PTSD. When will this new drug be available?
Jackie
It’s going to take some time for the drug to become available. Tonix will need to do at least one large phase III trial. On the bright side they should have the infrastructure ready to do that. I would guess 1-2 years at the earliest with 2 years being more likely.
“Likewise, the Rituximab trial hopes in ME/CFS ended in spectacular fashion when the ME/CFS community learned to its dismay that substantially more patients benefited from the placebo than from the drug – which also had high rates of side effects to boot.”
I’ll nag on restating a gut feeling I have once more:
The placebo was giving the patients regular doses of IV saline at an interval. If I understand it correctly, Rituximab is a medicine administered in IV saline as well.
So let me summarize this:
* Both Rituximab and IV saline (“placebo”) yielded clear and good results.
* So Rituximabe *again* succeeded improving patients a lot.
* Some studies (not enough time and energy to search for a link) show that the placebo effect in ME cases is exceptional small compared to other diseases.
* Several small to mid scale studies have shown long term success with IV saline for both POTS as ME/CFS; see:
https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/
https://www.researchgate.net/publication/313506555_Effects_of_intermittent_intravenous_saline_infusions_in_patients_with_medication-refractory_postural_tachycardia_syndrome
https://www.ncbi.nlm.nih.gov/pubmed/9292244
https://www.ncbi.nlm.nih.gov/pubmed?term=burklow%20saline
* Effects of long term “placebo IV saline” treatment were better
then those of Rituximab administered in IV saline.
* Side effects were high in both groups but higher in the Rituximab group.
=> So did Mella and Fluge observed the effect of the long term administration of regular doses of ‘Rituximab polluted” IV saline?
It at the very least begs a further in depth large scale research onto it’s (long term IV saline) effects and optimal dosing and intervals. Having IV-saline patients also reporting severe side effects is no proof of the placebo effect at all. Our bodies seem to turn down blood volumes a lot and may well do so in order to control the disease (for example prevent massive body wide inflammation as low blood flow provides compelling options to reduce inflammation IMO or just reduce chance of brain hemorrhage due to weakened capillaries (due to high amounts of oxidative stress). Purposely overriding this potential “safety mechanism” is likely to have side effects.
So please please someone write and get a NIH grant to further the previously done research. IV saline is cheap, available and doesn’t need years and years of research to get approval and be available to us patients if it was actually working. Full remission for some patients is nothing any of us would sneeze at and may be within grasp for part of the patients if this actually worked and were optimized for better results and lower side effects.
Micro-circulation of blood seems to be a big thing in ME/CFS. And as Ron Davis himself mentioned ME patients blood can let healthy peoples cells behave as if they were ME cells. He also mentioned there very likely was something in the blood propagating ME. I know it isn’t a magic end all solution, but “diluting” blood by giving regular IV saline injections is a simple way to temporarily decrease concentrations of this chemical Ron Davis suggests and may be sufficient to pull the least affected of us out of disease and/or to pull the more affected to a somewhat higher level of functioning.
A saline study is underway in ME/CFS – I’m pretty sure. It is possible to get saline IV’s without doctor prescriptions as well I believe. Need to look more into this.
Since Rituximab usually takes months to take effect I don’t see how a single or even a couple of infusions could make much of a difference as the effects of saline wear off quickly (???)
“Since Rituximab usually takes months to take effect I don’t see how a single or even a couple of infusions could make much of a difference as the effects of saline wear off quickly (???)”
Yet that is what previous small scale studies suggest. Effects of saline should wear off just as fast in POTS, but it seems it does provide long term benefits to part of the subjects in the study even after stopping using it.
ME seems to be a disease with a memory. It kinda remembers how sick you are and get locked into that state until something happens and you end up at a different state. That different states is most often lower, but their are cases enough were it is higher.
Improving something about blood flow or blood quality for as little as half a day per each treatment may offer small step-wise improvements. If half an hour of over-exertion can cause a very bad relapse then maybe half a day of a modest clinical improvement of parameters could trigger small step-wise improvements. It would fit the “memory-like” behavior of ME.
I must have missed evidence that short term use of saline can have long term benefits. I found this study – https://www.ncbi.nlm.nih.gov/pubmed/28185102 – which found that intermittent use was helpful but there’s this one – https://www.ncbi.nlm.nih.gov/pubmed/26446285 – which found the effects continued for many apparently. I guess the question is how many infusions does it take.
I think you bring up a very good point about “memory” but my guess is that the opposite is true – that so many bad “memories” have built up in ME/CFS over time that I would be very surprised if the few infusions in Rituximab would be sufficient to obliterate them and calm down the SNS permanently. It would be interesting to see what more infusions would do. I do know of people who have had many saline infusions who are still quite sick but it’s an intriguing idea.
Yes, I saw the iV saline study as well and a comment made by another researcher, Cindy Bateman if memory serves. She tells ME/CFS/FM patients to drink ice cold water quickly glub glub glub for energy. Has to be ice cold, can’t be sipped, must drink quickly. I forget recommended amount but it was about the size of my largest water bottle. I discussed w my MD and he was familiar w the idea and suggested I try it. I asked if it would make sense to use more salt. Since my Pottasium was low, he was ok w it. I’ve been doing this for about a year when I needed energy for a task or activity and it seems to work for me!
I think the idea first emerged bc hospital personnel noticed that ME/CFS/FM patients felt much better after receiving IV saline and before receiving any other treatment or meds!!
Best Regards, Cort. I think you are amazing. So many of us count on you to break down medical info and articles and studies for us. I am so grateful.
Ice cold water – no kidding! I will give it a try 🙂
dejurgen, I tend to agree with you about the strong possibility that it was the IV saline that was helpful to the placebo group; and sadly, the pharmaceutical might have negated the positive effect of a saline drip for the experimental group. I am becoming increasingly leery of pharmaceuticals and manmade chemicals in general and while it would be wonderful if there were a wonder drug, I wonder if drugs don’t cause more harm than good. The metabolomics research (give me a pass here, I realize its a longshot connection!) about not “fixing” the immune system too mechanically, for me buttresses my increasing suspicion of a pharmaceutical “solution” to ME/CFS; at the same time, each time Cort profiles a possible pharmaceutical, I do check it out with my docs. Don’t know what the better route is — hoping something will come out of the research being done now. I was really impressed by the research spotlighted at the early April NIH conference (though again, I’m a little leery of the Mestinon as a quick fix….)
As a PS, I was amazed how “good” I felt for about 12 hours after a colonocopy a couple of years ago, when I asked the doctor to give me an additional large bag of Saline in the recovery room. After that, I sought a way of getting periodic saline IV’s, but found it nearly impossible. A doctor of mine opined that it might not have been the saline actually that helped me, but the lasting effects of the anaesthesia — that I’d become inured to the constant pain I was carrying around and how tiring that was. Maybe he was right. I did wake up the next a.m. feeling the normal bad.
@cdax: next to impacting blood volume and blood flow IV-saline dilutes blood. That also includes hemoglobine and dissolved CO2.
Would you have happened to breath remarkable easy (low need to breath, slow breathing) and have had slow (calm, not too slow) hart pulse after the IV-saline? Would it have reduced anxiety and “wiredness in your head” a lot? Have created a sense of whole body calm?
As you obviously stated that you improved those above will likely have improved too, so my question is did these specific symptoms improve beyond what “just feeling better” should have done?
I believe our “hyperventilation” and hypocapnia may not be a mistake or the result of over-breathing due to anxiety. I believe there are quite a few reasons why our bodies would wish to reduce CO2 content in blood a lot below normal values.
On such reason could be that bicarbonate in combination with xanthine oxidase creates massive free radicals and xanthine oxidase is created for example in very large quantities in ischemia/reoxygenation episodes.
Using IV-saline could help lower blood bicarbonate enough (as it contains water and sodium chloride but no bicarbonate) to help our effort reducing CO2 levels and potentially associated strong production of free radical bicarbonate anions (worse then your average oxidative stress) offering a remarkable short term feeling of well-being plus some small amounts of longer term benefits by creating a temporarily relief in combined oxidative, free radicals and protein misfolding stress.
That in turn could create an opportunity for the body to replenish depleted levels of glutathione and ATP, providing a basis to “reset” to a slightly better level of functioning per each application.
Using oral saline is far more available but likely not as effective. Increased salt can upset our sensitive digestive systems and absorbing water from the gut does cost ATP or energy, something we lack.
I’ve seen (in the CNN article) Ron Davis uses IV-saline for his son for rehydration, probably on a daily basis so it is not a miracle drug. Yet, he would not do so if he didn’t believe it does offer some benefits.
It’s incredible to me to think that a couple of IV infusions could create such a strong placebo effect that it would be present six months later. Not with all the distress present in this disease.
Many people have had IV infusions, some even have pic lines introduced and I’ve never heard of IV saline mentioned as other than a temporary help.
cdax, I felt so great after my colonoscopy, just a few years ago. It was so good it makes me laugh.
Same question as for cdax: was really easy breathing and a clear whole body relaxed feeling part of the experience?
Maybe an even more important question: did you get IV-saline, anesthetics or both?
dejurgen, unfortunately that very good experience was several years ago. what i recall was feeling stronger and having more energy. wasn’t paying attention to my breathing, but the points you make are very interesting. will start paying attention.
dejurgen, I asked a body worker of mine (who is very knowledgeable and observant) about the possibility of over-breathing, and she remarked that my problem is rather the opposite – of not breathing enough. Relaxed breathing? I don’t know, but at least not hyperventilation. For whatever that is worth. I’d like to introduce a new question: that of our low sodium levels, at least I think that is characteristic of ME/CFS and know from an endocrinologist that that is characteristic of insufficient energy –and whether the IV Saline conceivably helps to balance that.h
“that of our low sodium levels, at least I think that is characteristic of ME/CFS ”
=> I am unaware that this is a characteristic of ME/CFS, but it could. If you could provide me more data it would be interesting (even if only in a sizeable subgroup) as it would help me to re-evaluate lung edema as a potential driver for ME hyperventilation and low blood volumes.
According to https://en.wikipedia.org/wiki/Saline_(medicine)
“In those with long-standing low blood sodium, excessive use may result in osmotic demyelination syndrome.”
That ain’t good at all. So might be careful with requesting an additional bag of saline. It doesn’t mention how low blood sodium has to be to be problematic or what doses of how strong (there are formulations with more or less NaCl then standard ones) IV-saline is bad but it certainly is something to keep in mind.
That would suggest it was in fact the anaesthesia. Some of us do really well with it, others get sick from it. Re the saline, in my case, I specifically asked the doctor to give me an additional large bag of IV Saline in the recovery room, which is why my first thought was to attribute feeling stronger to the saline.
Anesthesia -even dental anesthesia – does the same for me. I tend to feel more energetic, calmer, reduced pain etc.
I was wondering if anesthesia might do what the body tries to do at a somewhat more efficient way or allows the body to let our “emergency systems” rest.
What I was thinking: it seems our bodies try to put us in hibernation (or slow down our metabolic rate) and “inhibit us”. Anesthesia try to put us in a sort of hibernation too.
While anesthesia should reduce how much energy people have in the general population, it may allow the body to reach the same desired effect of (partial) hibernation without having to produce the chemicals itself. If there were no side effects of the anesthesia drugs (there clearly are and they can be really dangerous) then it would reduce the burden on our bodies to “reach” this state of partial hibernation the body theoretically wants to reach. I know it’s very hypothetical and full of pitfalls yet I decided to look around and see if I could get something.
First thing I found is that anesthesia are often relaxing muscles. For us that would be a mixed bag but could reduce net energy consumption in part of the patients.
But then I got this: https://www.sciencedirect.com/topics/nursing-and-health-professions/cerebral-metabolic-rate-of-oxygen
“Volatile anesthetics decrease cerebral metabolic rate of oxygen consumption (CMRO2; see Chapter 8). Because of flow-metabolism coupling this should result in a decrease in cerebral blood flow (CBF) and intracranial pressure (ICP). However, these effects are offset by the direct vasodilation effect of volatile anesthetics on the cerebral vasculature particularly at higher doses. Nitrous oxide increases cerebral blood flow with a mild increase in CMRO2. Coadministration of propofol, barbiturates, or opioids counteracts these vasodilatory effects.”
The combination of “dazing, calming down, slowing down” the brain, reducing it’s oxygen consumption and increasing cerebral blood flow may help the brain to get a “temporal relief” and get some “temporal margin” to recover a few percentage points.
Decreasing metabolic rate could reduce brain exhaustion during that period. Reducing oxygen consumption, as long as it does not fall below safe limits, may or may not reduce anaerobic metabolism, lactate buildup, production of oxidative stress, exhaustion of mitochondria…
Combine it with temporary increased blood flow (and my gut feeling says potentially more even blood flow in the brain, like not having small local spots in deep trouble) and we could have an episode of reduced toxin production and brain exhaustion with increased waste removal. Again, very theoretical but I wouldn’t dismiss the possibility. Also, risk of anesthesia let alone regular bouts of it are really high. Death or long lasting to permanent dementia is not uncommon after anesthesia. So this is absolutely not a do-it-yourself thing. But the concept might be worth looking into it and open new options for research. Remember some patients report they got into ME after surgery and anesthesia as a warning against experimenting!
As to feeling more energetic and focused with it, There is as said the reduced need of the body to produce chemicals putting the body in hibernation (under the assumption that that is a good but rather unpleasant thing for the body to do to us) and sensory overload is reduced. So that “liberates” some of our energy and a mild dose of anesthetics may put us no more in hibernation then our own bodies try and do without it. So it would not result in a loss of focus/energy but might free up some energy due to less sensory overload and chemical production.
Also, if my gut feeling is wright and anesthetics were able to inhibit our bodies more even then “we can do on our own” then it would reduce spots of very poor blood flow. In some recent posts I argued that strong variation in local blood flow likely present in ME may amplify symptoms and make “natural recovery” very difficult.
As the anesthetics in the research report to dilate blood vessels and many of us are already short on blood volume, then some amount of IV-saline often provided during surgery may prevent blood pressure to drop to dangerous low levels and both may, when getting a good mix, improve potential outcome for *select* ME patients. IV-saline on itself seems to be able to do remarkable things too when lucky. That effect could, in very lucky combinations, provide remarkable and sometimes even permanent results (as one patient mentioned in a recent comment).
But remember: getting this mix wright *IF* the idea even made sense is like playing reverse Russian roulette (with 5 bullets and 1 blank). Don’t try this at home and leave it to researchers to maybe pick this up and look into it.
Note: has anyone an idea how many patients of Fluge and Mella would have gotten (not necessarily at the exact same time) both regular Rituximab (IV-saline?) and some form of anesthetics to reduce pain symptoms?
This is a really inspiring idea. Except for the detail in the Nanoneedle report, wasn’t there a negative effect — of stressing the blood of the patients by adding salt? Do I have this detail right? (Comments please?)
On the bright side: There really could be practitioners out there who will let one have saline IVs. Maybe nurse practitioners, chiropractors? I had an integrative-minded M.D., a couple of years ago who gave me a saline IV because they found my blood pressure was very low. Now I’ll definitely ask if any practitioners in my network will let me have these IVs. They _just might_ want to start very small and gradually increase after that, which is totally fine — unless someone says otherwise…? We shall see.
“wasn’t there a negative effect — of stressing the blood of the patients by adding salt?”
Yes, but if I get it wright the whole idea of the salt stress test was to put the cell in salt concentrations that are a lot higher then what is normal in blood, so that the cell would easily become “flooded” with sodium and therefore has to work hard to move salt out of the cell into the surrounding liquid with high salt concentrations. That “working hard” does cost ATP and is the stress test itself.
One could say that the test was equivalent to putting the cell in “equilibrium salt concentrations” at start and then add salt without adding water.
IV-Saline contains equilibrium concentrations of salt and water, hence having this effect to a far far smaller degree.
The Rituximab study reported averse effects of the IV-saline placebo and those IMO were likely real. But *on average* and *for the used doses and intervals* results were positive. So keep in mind this still is *very* experimental with all possible consequences associated to it. The safest bet is to wait further research. At the very least it asks a knowledgeable doctor on IV-saline treatment. Notice that there are also different saline formulations available IMO and that could have quite an impact on results.
I think raising the issue of salt is important. My doctors (traditional orientation) are concerned about my low sodium levels, which are just always there. “Don’t drink too much water”, “eat more salt”, etc, but the feeling I get is that they don’t know what is going on or what to do about it, but know it’s not right. I’m not sure I’m inserting my comments into the right parts of this conversation, but what about IV Saline and blood sodium levels? I guess I’m asking dejurgen.
To be fair, the salt question is one I am struggling with myself too.
Some say they feel better when increasing salt intake. I don’t. But then again I’ve got severe gut issues. And a salty diet can be hard for the digestive tract. Mainly to the stomach, but I hear it can be hard for the gut too.
Also I have “in range” salt values in my blood, but had and have now to a lesser degree probably low blood volume. Low blood volume with normal salt per ml values means less total salt in the blood but if that does mean less salt in all of the body per kg of body weight I don’t know.
I think a major question is: what part does excrete salt, what type of salt and to what purpose?
It can be the kidneys that excrete salt, but it can also be the gut. NaCl provides Cl for HCl or stomach acid. Some Na loses it Cl and can become, among other, NaHCO3. The bowel needs to be far less acidic then the stomach. Stomach acid gets compensated by infusing the gut with alkali NaHCO3. This may be a more important route in my case (as with severe gut issues there is also a chance of the gut losing Cl in the gut that has to be compensated by dumping extra NaHCO3 into it).
But you said you are an under-breather. That points to excretion by the kidneys in your case IMO. Under-breathing and low salt volumes indicate the kidneys get a signal that the lungs are flooded by water. In order to drain it and allow proper breathing they increase a hormone I can’t remember it’s name to increase salt and hence water removal by the kidneys. That hormone is very expressed in the lungs.
A common response to increased water in the lungs is breathing faster, something you don’t do. But it seems your adrenals are (willfully or out of weakness) standing on the brake.
Would I be right that you are a person with a weak (I don’t say slow) pulse and that you have, for an ME patient, a rather weak fight-or-flight response? Rather then getting anxious and angry, a feeling of lethargy and not worrying much (considering the dire situation you live in) would be more common.
If I am correct, rather then increasing salt and water intake it might be better to learn to diaphragm breath. That allows you to use more surface area of your lungs and getting better oxygenation despite the hypothetical wet lungs and potentially if you do it well use even less energy breathing .
That doesn’t make lungs dryer all by itself, but it does reduce the urgency of draining the lungs of water so much as you get less shortage of oxygen. But using a higher surface area of your lungs would help vaporize supposed excess water from the lungs indirectly drying them up and reducing need to drain them from water. Living in a not to wet environment could help that as dry air takes up more water then wet air.
If you would use an air drier, don’t try and get below 40% relative humidity because that can harm skin and airways too.
Having air temperature (while monitoring air humidity, you don’t want to grow mold!) lower (no need to go crazy cold) helps too. Cold air you breath in contains few amounts of water even at “comfortable” relative humidity. When you breath it in you warm the air up and it can contain (and hence remove) more water.
Breathing in and out through the nose will help increasing the temperature of the air in your lungs. So it feels more comfortable to the lungs and can remove more water vapor at the same time.
Notice that evaporating water in the lungs will cost some energy and cause you body to cool down. That decreases inflammation but keep it in mind if you were already hypothermia. Removing water by the kidneys costs energy too but *maybe* less per amount lost.
Doing small amounts of circulation exercises should slowly improve body-wide circulation (slowly, over months, going too fast can be quite inflammatory) including blood circulation in the lungs. That both should improve breathing and water drainage in the lungs.
So, *IF* I get it wright the combination of:
* learning to diaphragm breath
* doing light circulation exercises spread over the day
Should improve both blood volumes and salt content over time (many many months, go slow and be patient!).
Do so under guidance of doctor and an good physical therapist. The doctor can evaluate health evolution and blood values. The !good! physical therapist can help you learning to breathe better (prime goal) and to do safe circulation exercises. Tell the therapist you have to start very very low and even then cut intensity and numbers by a factor 2 to 5 compared to suggested. Listen to how your body responds. I tried to learn to breathe better by myself (book), and that was an utter failure even while I consider myself to have really keen senses.
An important one I learned from experience: the goal is NOT to breath more, but to breath more efficient. When I learned to breath more I felt a quick improvement in condition and took that as a sign to try and breath even more. Result: big backslash as I unknowingly exhausted my “breathing apparatus” and due to that could breath less when I needed it the most (the night in my case).
Another quick one if you had the feeling that, as the night progresses, you get less and less oxygen: lay on your hart side late night. That improves hart prefill and hence blood circulation and consequentially improves breathing if it is hindered by circulation.
As sleeping only on my hart side causes my fibro pain to stack there, I do it late night/morning only. In order to divide the irritation from lying down at other moments when the need to breathe more is less I then lay either on my back or the other side.
If it would help you over the long term, please share your experiences. As this topic will die out, feel free to mail too user dejurgen on the general forum communication options.
Know I have absolutely no medical schooling. So it’s not medical advice, just ideas based on experience you can talk with your doctor about.
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Good news that drug development is continuing – let’s hope we get some good news before too long.
Just on the colonoscopies: I’ve had two, without anaesthesia, saline, or anything else. I felt great after both, but I’m sure it was just because my whole gut was empty. I wasn’t using energy trying to digest food, and no symptoms were being produced by anything in the food. A few hours after I resumed eating, I was back to normal…I’ve also experienced feeling much better after a nasty case of diarrhoea, probably for much the same reason!
Fiona
I had sigmoid colonoscopy where I had to do my own enema with a kit. I had no anaesthesia and also felt good. In the rare occasions I have had food poisoning / diarrhoea my pain vanishes. It is like system reset I feel light and supple. Had colonic therapy a while back which was downright awful. Don’t know I can do gentle enemas on a regular basis? I have a quite low weight.
Trying to skip doing real research and redo or repurpose old failed meds is just plain depressing to me. I tried cyclobenzaprine twice, different dosages, still knocked me out for day and half. .well, I didn’t feel pain while out like a light.
I was offered to be in the Tonix study but it required you to give up all meds for a month or longer, can’t remember. So people in what level of pain do you think participated in those trials??
Well, this is not really Flexeril anymore which means it’s repurposing either which means using an old drug for a different conditions. It’s a significant enough change that the FDA considers TNX-102 a new drug a new drug – hence the need to do these expensive studies.
I imagine many people in the study didn’t respond well to any of the drugs out there.
I have been taking 5 mg of Flexeril SUBLINGUALLY at bedtime for around 5 years, when I first read about a sublingual form of Flexeril was in the works.
Before that, I was swallowing 10 mg of Flexeril with water.
I find that taking 5 mg sublingually works much better than swallowing 10 mg.
It doesn’t taste bad at all. So, it is easy to let it dissolve under my tongue.
When I was in practice and treating CFS patients back in the 90’s,(*)giving IV Saline was a no-brainer. If your PCP can’t take your word that a liter of saline makes you feel better at whatever interval, you need another doctor. It is crucial for CFS/FM patients to have a an open-minded caregiver who understands that people challenged with FM/CFS are probably more knowledgable and motivated about their health issues than any other group of patients. You are the greatest asset to your care IF your docs will listen and be true advocates. The docs need to have an attitude of “what would be the harm” ito trying remedies that you guys learn about. Bring them articles or even anecdotal responses you’ve seen or heard. Let the doc do their due diligence ito finding out about possible downsides or drug interactions. I often spoke to the head of pharmacology at the hospital/medical school where I was affiliated for some input or even spoke directly with docs already using modalities with which I was not familiar.(eventually, I was subscribing to all the popular newsletters etc you guys read all the time). A relatively new resource ,for some perhaps,is Consumerlabs.com.It is my go-to source for nonprescription therapeutics. (* I have been retired since 2000). Good luck to all of you.