Daughter's recovery details

[Celandine]

I'd mentioned over on the 'Welcome back Cort' thread that this place and Health Rising were instrumental in my daughter's recovery. A couple people wanted to know more so I'm starting a thread here rather than clogging that one up. This is long! Sorry.

I feel like I probably detailed her story somewhere on here a while back. She started getting sick around age 14/15. Repeated sore throats, extreme fatigue, stomach pain, worsening headaches, etc etc. She was in a woodwind orchestra so was playing a lot of clarinet and she would get very faint if she had to play standing up. Clarinet is basically doing the valsalva manoeuvre so that makes sense now. After going on a residential weekend with the orchestra where she was playing for hours, staying up late, getting yet another sore throat and also getting her period all at once something broke and she started getting very ill. Over the next months she had worsening of all symptoms and started getting PEM. Headaches were particularly brutal. Something new every day and I had no idea what was going on. Much more but you all know about that side of it.

Couple things that were on our side. One was that she was young when she first got really sick. I think young bodies have the potential to bounce back faster if given the opportunity. Second "lucky" break was that UNREST came out right around the time she started getting symptom after symptom. I remember vividly lying in my bed watching it with her just because I'd heard it was a good film. At the end I turned to her and said, "Well, just be glad you don't have THAT." And, ummm. Yeah. Watching UNREST speeded up my realisation that she had ME possibly by years. This was lucky because it meant I didn't push her to keep attending school so she was resting from early on. Also, seeing such severe cases in the film scared the crap out of me and I was hellbent on getting her out of this mess. But--and I know this isn't what many want to hear--probably starting to treat in various ways within a few months of the onset of serious illness made a big difference. But maybe not.

After realising that her GP and paediatric consultants were going to be useless (Got a "CFS" diagnosis and shunted over to Medically Unexplained Symptoms Clinic where she was offered some melatonin (did nothing) and OT (refused it) and nothing else) I started reading. Lots of Health Rising and Phoenix Rising.

I had a limited budget and she was a kid so I was searching for things that weren't crazy expensive and also things that might have big results with low chance of side effects. I saw lots of people getting extensive and very expensive tests. While the results were interesting, most of the people getting them were still sick. So I discounted that as not being value for money for us. Through the whole journey J has had very few tests beyond the basic. Also discounted long courses of antivirals because they were going to be hard to get in the UK and also risked side effects with a fairly small chance of resolving things. Rather than take you through the cupboard full of failed remedies I'll list what I think worked. This took years to work, though. She was moderate/severe/mostly bedbound for over two years which I know is a drop in the ocean compared to some of you, but I think it would have been much longer and she would still be home today if some of the below hadn't worked. And before you get your hopes up--none of this stuff is revolutionary. It's all been around. And it may only be the right combination of things for this one individiual. But anyway, things that helped in her particular case:

1) 1tsp liquorice root powder + 1/8 tsp salt dissolved in a big glass of plant milk daily. There's an Italian doctor with ME who basically cured himself with this. He wrote a paper on it. @Hip probably knows the paper I'm talking about. It's on here somewhere. We started this before I suspected POTS but it would have acted very similar to first line POTS treatment as liquorice acts similar to fludrocortisone and salt also helps retain fluids. This wasn't a cure for us but I could see a small difference in energy and some improvement in headache and it was the first thing to give a glimmer of hope.

2) Perrin Technique osteopathy for over a year. When I first heard about this treatment I thought it was absurd and scummy and totally discounted it. It made no sense to me. But then I read this article (https://www.healthrising.org/blog/2...rin-point-ray-perrin-me-cfs-and-fibromyalgia/) over at Health rising and listened to the embedded interview with Perrin and it started to make some sense. It connected with what I was seeing in my daughter. It's very frustrating to me that it gets lumped in with Lightning Process which it does not resemble in any way. There is no psychological component. It isn't secretive or crazy expensive. Another lucky break was that there happened to be a Perrin trained practitioner 10 minutes from us. Very lucky as we live fairly rural and there isn't another for many many miles. Again, it was something that could have big benefit with slim to no chance of side effects so it seemed worth trying.
I'm sure I've written about it on here elsewhere so I'll just hit a couple things that stick with me about it.
--- It's slow and you have to be patient. Weekly for the first at least 12 weeks. I've seen people go a few times and decide it isn't going to work. Maybe it wouldn't for them, but we stuck with it for a long time. Weekly then bi-weekly, then monthly etc.
---Part of why we stayed with it is because of the intense reaction to the first couple treatments. Daughter spiked a fever and got really nauseous. It's largely lymphatic drainage so something toxic must have been in her lymph to cause that reaction. Headaches gradually improved, as well. It wasn't a straight line of improvement, though. Many ups and downs.
--- @Hip mentioned on the other thread that the breast massage aspect was important and he remembered correctly! Daughter's practitioner was male and he didn't feel comfortable doing this on her as she was a teenage girl. So, after a few months of working with her in other ways, he taught her to do that herself. It is so ridiculously gentle and so subtle that a non-ME person wouldn't even consider it as therapy. It's basically four downward strokes of the upper breast on each side. Most people could do 100 strokes and think it was nothing. Daughter would do that in the shower and without fail the next day she would crash. It was unbelievable to me. She would have to strategise when to do it so she didn't do it if she had anything going on the next day. It was supposed to be daily but she managed it a few times a week. And what convinced me about Perrin was that her ability to do the breast massage without crashing directly correlated with her improvement in general. It felt like she'd gradually released all the "stuff' and had come out the other side. Shortly after that we stopped Perrin because we all agreed she had gotten what she could from it.
---Her osteopath said that in all his Perrin patients sleep was always the last thing to improve/regulate. He was right about that.
---My sense is that the manual therapy got her body to a place where it could respond to other therapies and have them really stick. I think it was important for her. Dr. Peter Rowe, the well known POTS specialist, has also talked about using manual therapies in his practice.

3) POTS Diagnosis and Treatment. This seems obvious but I still encounter many people with ME who have never looked into this. Paediatrician who diagnosed my daughter with CFS never bothered to check for it. When I contacted her to say I'd done a home test (just using a hone app heart rate after 10 mins lying down then for 10 mins standing) and think she has POTS doctor said it was just another syndrome like CFS and not worth pursuing. Aaarrghhhhh!!! Had I listened, daughter would still be bedbound. After getting a referral to an autonomic consultant daughter has ended up on Ivabradine, Midodrine and Salt tablets. Plus 2 litres of water/day. Started Ivabradine on its own but that actually made things worse because it slowed heart rate without increasing vasoconstriction. Initially I solved this by adding Swanson timed release Horsechestnut capsules (had to be this exact thing) which provided good vasoconstriction. eventually this was replaced with midodrine. Her supine heart rate is approx 65. Standing up to 160 without meds and sometimes even with meds. But treating POTS was a real game changer.

4) Palmitoylethanolamide(PEA). Another thing that came from Health Rising! It seemed pretty clear that neuroinflammation was an underlying factor in many ME and POTS symptoms. PEA reduces neuroinflammation and has been shown to reduce pain in fibromyalgia. Pain of all kinds, particularly spinal, were a big issue for my daughter. She couldn't sit at a desk for any length of time without the spinal pain getting too intense. PEA is yet another thing that has very slim chance of side effects but a good chance of doing some good. I bought Normast brand ultramicronised PEA from an Italian pharmacy. I can't say that it's super cheap but it seemed to have a good track record and seemed worth trying. Like Perrin, though, it isn't something that works immediately. It's subtle, so I have a feeling people give up on it. After two weeks of taking it I noticed daughter sitting at her desk drawing. She was there for over an hour without complaining of pain. She didn't notice this change, I did. So we stuck with it. It's something you build up then taper off. So she did 600mg am and 600pm for around 10 weeks then tapered down. Really improved pain for her. It also turned out to be useful for POTS flares after she was more recovered, It seemed to bring her down from those.

5) After she was tolerating the breast massage and on POTS meds and hoping to get back into education the thing that made me really hopeful that she was improving was that she got a "normal" cold. She hadn't been normal sick for two years at that point. So that was great, but it triggered a major relapse of headaches and POTS. Actual fainting POTS that time. Some time prior I'd been reading about intracranial pressure as a possible cause of POTS and so I'd ordered some Diamox (acetazolamide) online but never gave it to daughter. But I decided to try it. Just a quarter dose. Of all the things we've tried this was the most immediate, obvious, almost miraculous thing. Daughter said she could feel "crackling" in her head within about 20 minutes. Lots of urination and a lightening of symptoms within an hour. Some hours later she had a second dose and I could actually hear her neck making cracking noises. I think nobody believes this but it was true! It improved the relapse dramatically and brought her back to baseline. Took it for a couple more days until she started to get some side effects. Unfortunately, it never worked like that again. I also have no idea if it might have helped earlier in her illness by releasing intracranial pressure. It's almost doing the same thing as Perrin Technique but chemically instead of manually.

6) Continuous combination birth control pills. I know everyone reacts differently to this and daughter has experimented with different brands but her cycle was exacerbating every bad symptom so stopping periods was a huge help.

6) This is not a big curative thing and may be specific to my daughter, but the only thing that would get her to sleep when she was really bad was diphenhydramine. Having said that, she never wanted to try any of the big gun addictive things, so they could have helped as well.

7) POTS doctor had suggested she might have MCAS but sodium cromoglicate didn't do anything for her and, strangely, Ranitidine made her very groggy. But Famotidine seems to be doing something good for her so she's stuck with that as an H2 receptor blocker and occasionally adds an OTC H1 blocker, as well.

So, flash forward and my daughter is 21 now. She is at university in London. Living with friends. Miraculously well enough to have a pretty normal life. Health has been up and down over those years but she no longer meets the parameters for ME. No PEM and good restorative sleep for the most part. She still has POTS and is still on the above medications for that. She's just finished her second year and has had to take time off for POTS flares now and again but she's been able to keep up with uni work and has a part time job in a pub working lots of hours in a row on her feet right now. She's had Covid twice and recovered in the same way as her peers. Remembering how she was a few years back it feels like a miracle that we're where we are. If any of this helps even one person then it was worth writing it all down!

 

[lenora]

Thanks for taking the time and effort to write down what helped restore your daughter's health.

The best chance is you plus the early years of the illness. For whatever reason, you hit the jackpot.

I've used the opioids (low, low doses and backed off the same way). My pain wasn't helped and it just makes sense not to start something you don't know much about. Years later, I read the book about the Sackler family and was just sickened by how this was perpetrated on doctors and patients alike.

I've used an osteopath (with my now deceased neurologist's knowledge) for years. IF you get one who can do the very gentle therapy we need, then we're fortunate. Most male doctors and therapists are very careful about a female's breast area (lawsuits, etc.), so that may have been the reason. Anyway, I'm glad it worked.

Thanks for the after-report. I hope your daughter is health, happy and does good work at school.

Good for Mama! Yours, Lenora

.

 

[Hip]

---Part of why we stayed with it is because of the intense reaction to the first couple treatments. Daughter spiked a fever and got really nauseous. It's largely lymphatic drainage so something toxic must have been in her lymph to cause that reaction. Headaches gradually improved, as well. It wasn't a straight line of improvement, though. Many ups and downs.

--- @Hip mentioned on the other thread that the breast massage aspect was important and he remembered correctly! Daughter's practitioner was male and he didn't feel comfortable doing this on her as she was a teenage girl. So, after a few months of working with her in other ways, he taught her to do that herself. It is so ridiculously gentle and so subtle that a non-ME person wouldn't even consider it as therapy.

It's basically four downward strokes of the upper breast on each side. Most people could do 100 strokes and think it was nothing. Daughter would do that in the shower and without fail the next day she would crash. It was unbelievable to me. She would have to strategise when to do it so she didn't do it if she had anything going on the next day. It was supposed to be daily but she managed it a few times a week.

And what convinced me about Perrin was that her ability to do the breast massage without crashing directly correlated with her improvement in general. It felt like she'd gradually released all the "stuff' and had come out the other side. Shortly after that we stopped Perrin because we all agreed she had gotten what she could from it.

This is very interesting, the fact that just a few insignificant massage strokes of the breast area would lead to a major crash/PEM the next day.

As you say, this intense reaction to just a few gentle stokes of the breast seems like a good indication that something is amiss in the breast region, with regard toxins and lymph flow. If I had such a reaction, I too would think that I was onto something.

It would be interesting for ME/CFS patients to try such a Perrin Technique breast massage, and see if they too get a crash the next day. If they do, then that might indicate lymph issues, and might perhaps suggest they would be a good candidate for the Perrin Technique.

I wonder if ME/CFS patients who respond well to the Perrin Technique might be those who crash after a gentle breast massage, or after one of Perrin's other lymph moving massages? Does such crashing after a Perrin massage indicate that the patient has a lymph flow issue, and would thus benefit from the Perrin Technique?



I found a couple of videos demonstrating the Perrin Technique breast massage, this one at 4:02, and this one at 3:03. Is this the massage that your daughter was doing?


How much would you estimate the breast massage done at home was contributing to your daughter's recovery, @Celandine, compared to all the other massages that the Perrin practitioner did with your daughter, during the year that she was regularly visiting this practitioner? Or is that hard to say?

When your daughter visited the practitioner, did she also crash the next day after the therapy? Or was that crashing just with the breast massage?

If crashing indicates the level of toxins present in the tissues or lymph system, then perhaps the particular tissue massages that were causing the crashes might have been key therapies in the recovery.

 

[Rufous McKinney]

If crashing indicates the level of toxins present in the tissues or lymph system,

I pretty much always crash after any acupuncture treatment because it "moves something"...(I get very small treatments as I cannot tolerate a full treatment what so ever); I take lymph cleanse herbs and typically after about two days, crash from those. (or get brain bubble)

I am often working on lymph.

and now I have low grade B cell lymphoma diagnosis!

Tai Chi has a pretty direct effect on the lymphatic system as well.

POTS doctor

What type of doctor is that?

She's had Covid twice and recovered in the same way as her peers. Remembering how she was a few years back it feels like a miracle that we're where we are. If any of this helps even one person then it was worth writing it all down!

its wonderful to read about your daughter's improvement, and congratulations on managing to get there.

 

[Celandine]

I've used the opioids (low, low doses and backed off the same way). My pain wasn't helped and it just makes sense not to start something you don't know much about.

Yes, same thing. Codeine never helped. Turns out opioids are really big triggers of mast cells which might explain why people with ME often don't react well to them.

 

[Celandine]

How much would you estimate the breast massage done at home was contributing to your daughter's recovery, @Celandine, compared to all the other massages that the Perrin practitioner did with your daughter, during the year that she was regularly visiting this practitioner? Or is that hard to say?

When your daughter visited the practitioner, did she also crash the next day after the therapy? Or was that crashing just with the breast massage?

If crashing indicates the level of toxins present in the tissues or lymph system, then perhaps the particular tissue massages that were causing the crashes might have been key therapies in the recovery.

If you've read much about Perrin's theories he talks about the "Perrin Point". If you search here you'll find threads and a poll about it. It's a spot about three inches diagonal and towards the armpit from the left nipple and it's where (forgive me if my memory on all this is a bit loose!) there's, I think, a confluence of lymph ducts. If you poke people with fibromyalgia or ME in that spot they may scream! The poll I saw asked people with ME and healthy people to poke that spot to see if it was indeed true that it was particularly sensitive if you had ME. And it was. (They're probably more sensitive everywhere, though, so not that scientific!)So, anyway, that's right there in that breast area. I mean, it could be it was only the massage of the left breast near the Perrin point that was triggering the response. How would we know?

Yes, what's in the video is basically it but because her reaction was so intense he was only telling her to do a few strokes. Maybe she gradually upped it when it was less problematic.

After the first couple sessions she wouldn't crash after her non-breast Perrin sessions. These also included cranial massage. Manipulating the cribriform plate to release fluid. And there were also other home exercises that didn't trigger this response. One of the things I remember reading from Perrin was that in teenage girls there's all this new breast tissue growth and that could be part of the issue. Pre-covid, teenage girls were probably the biggest ME demographic and even bigger for POTS. I don't know. Worth reading his book if you're interested. Or listen to the interview in the link above. I think he might talk about it there.

I don't believe that only doing the breast massage would have sorted it. I think the whole body needed to be kind of loosened so things could start to flow. That's why he waited a while before introducing the breast thing. He needed to get things moving more efficiently all over first.

 

[Hip]

If you've read much about Perrin's theories he talks about the "Perrin Point". If you search here you'll find threads and a poll about it.

Yes, it was me who start the Perrin Point poll.

I found a tender spot at my own Perrin Point, but I get no adverse effects from massaging the breast area.

 

[Celandine]

I pretty much always crash after any acupuncture treatment because it "moves something"...(I get very small treatments as I cannot tolerate a full treatment what so ever); I take lymph cleanse herbs and typically after about two days, crash from those. (or get brain bubble)

I am often working on lymph.

and now I have low grade B cell lymphoma diagnosis!

Tai Chi has a pretty direct effect on the lymphatic system as well.

We didn't have luck with acupuncture. Didn't seem to help in her case. I don't really know what I'm talking about, but I feel like manual therapy rather than herbs or even Tai Chi is needed initially to manipulate the body into a place where it can actually get the lymphatic and glymphatic systems moving efficiently. If there are blockages of some kind it doesn't feel like herbs could actually move them.

What type of doctor is that?

Well, by POTS doctor in our case I mean a consultant who had a long running syncope clinic in a hospital near me. I think it was originally set up for elderly people who had syncope for different reasons. But POTS and EDS patients eventually became the bulk of the patients. So this general medicine doctor became an autonomic specialist over time. Strange, and sounds a bit rubbish, but this doctor was fantastic. Loved by all his patients. Actually cared about patients and was willing to be a bit experimental with medication because he understood the nature of these illnesses. Unfortunately, he was not really respected by the hospital and has been basically forced into retirement. With nobody to replace him! Patients campaigned hard to maintain an autonomic clinic but the hospital has not kept its word. Now the original doctor is available by email only for a very limited number of hours a week. Just keeping people's prescriptions up to date and dealing with emergencies. Very frustrating. Especially when long covid has created a whole new influx of patients with orthostatic intolerance.

 

[Celandine]

Yes, it was me who start the Perrin Point poll.

I found a tender spot at my own Perrin Point, but I get no adverse effects from massaging the breast area.

Ah ha! Of course it was you who started the poll!

It's probably because of my daughter's age and how quickly she started treatment that she got such a vivid response. Also, she did get ill during puberty so breast development may have played a role somehow. Her osteopath said that Perrin was much less likely to work if you've been ill for many years.

 

[Wayne]

---Part of why we stayed with it is because of the intense reaction to the first couple treatments. Daughter spiked a fever and got really nauseous. It's largely lymphatic drainage so something toxic must have been in her lymph to cause that reaction. Headaches gradually improved, as well. It wasn't a straight line of improvement, though. Many ups and downs.

Hi @Celandine -- Thank you for taking the time to outline your daughter's steps to recovery from ME/CFS, or at least substantial improvements. I've only perused this thread so far, with some of the discussion on lymphatic drainage being the most interesting to me at this time.

I recently ran across some videos by a young woman who had many of the symptoms of ME/CFS, though I don't know that she explicitly stated she had it. But she was bedridden and very ill. She eventually discovered castor oil packs, began to use them, and credited them with totally reversing her health situation for the better. Below is a link to one of her videos where she describes part of her health journey. Watching just a few minutes will give you the gist of her approach which totally changed the direction of her life.

How Castor Oil Packs Can Aid in Digestion and Detox

She credits castor oil packs' ability to support lymphatic drainage as key to her health improvements. Since then, she's started a company that sells organic castor oil, and a variety of castor oil wraps that are designed to be worn all night long. One of the wraps is one you can wear around your neck, and has apparently been used by people with thyroid disorders to completely restore their thyroid health.

In one of her videos, I seem to recall she mentions that 1/3 of all lymphatic drainage in the body occurs in the neck area. Makes me think of all the people on this forum who have various neck issues, especially those who have CCI. Could a big part of their array of symptoms be associated with impaired lymphatic drainage? I would think that would be likely.

Anyway, thanks again for sharing your daughter's journey to better health. I'm appreciating the discussion you started here on this thread.

 

[Celandine]

She eventually discovered castor oil packs, began to use them, and credited them with totally reversing her health situation for the better. Below is a link to one of her videos where she describes part of her health journey. Watching just a few minutes will give you the gist of her approach which totally changed the direction of her life.

Interesting you bring up castor oil packs. In her first year at university daughter was hit with severe lower left pelvic pain. Severe to the point of scary. She went to A&E and they did a scan and couldn't see her ovaries. Thought it could very well be endometriosis because periods had always been painful and a lot of people with POTS have endometriosis for some reason. Lots of overlap. The pain was constant. Couldn't laugh or cough without pain. She had to come home from uni because she couldn't cook for herself or get to lectures. This was probably the most heartbreaking moment for me because I thought we'd slayed the beast,. And here was another one coming for her.

Anyway, exploratory laparoscopy showed no evidence of endo but inexplicably her left ovary and fallopian tube were buried in adhesions. Surgeon untethered the adhesions and that resolved the pain...for 7 months. Then it came roaring back again. Adhesions had re-adhesed it seemed. So unlucky.

Since surgery causes adhesions, going that route again was not a great idea so I was looking for any other options. Castor oil packs was one thing I came across for this kind of pain. I have a container with the oil and a cloth soaking in it. But in the end it was such a messy proposition (the woman in the video seems to have a better set up than my homespun thing) that it never got used. It seemed like a long shot that it would get at deep adhesions. Ended up going for 8000FU/day nattokinase to break the scars down internally and a very good scar therapy physiotherapist to get at them externally. 6 months on and that plan has been working really well.

 

[CSMLSM]

Hi Celandine I myself am in full remission currently and it has been a 20+ year struggle to find answers.
A very important part of your approach I believe is the Palmitoylethanolamide-

Palmitoylethanolamide(PEA). Another thing that came from Health Rising! It seemed pretty clear that neuroinflammation was an underlying factor in many ME and POTS symptoms. PEA reduces neuroinflammation and has been shown to reduce pain in fibromyalgia.

Like Perrin, though, it isn't something that works immediately. It's subtle, so I have a feeling people give up on it. After two weeks of taking it I noticed daughter sitting at her desk drawing. She was there for over an hour without complaining of pain. She didn't notice this change, I did. So we stuck with it. It's something you build up then taper off. So she did 600mg am and 600pm for around 10 weeks then tapered down. Really improved pain for her. It also turned out to be useful for POTS flares after she was more recovered, It seemed to bring her down from those.

This fits with my experiences of my treatment approach which is closely related to your use of (PEA).

https://pubmed.ncbi.nlm.nih.gov/34842030/J Diet Suppl

2023;20(3):505-530.
doi: 10.1080/19390211.2021.2005733. Epub 2021 Nov 28.

Palmitoylethanolamide: A Potential Alternative to Cannabidiol​

Paul Clayton 1, Silma Subah 2, Ruchitha Venkatesh 3, Mariko Hill 2, Nathasha Bogoda 2
Affiliations expand

• PMID: 34842030
• DOI: 10.1080/19390211.2021.2005733

Abstract​

The endocannabinoid system (ECS) is a widespread cell signaling network that maintains homeostasis in response to endogenous and exogenous stressors. This has made the ECS an attractive therapeutic target for various disease states. The ECS is a well-known target of exogenous phytocannabinoids derived from cannabis plants, the most well characterized being Δ9-tetrahydrocannabinol (THC) and cannabidiol (CBD). However, the therapeutic efficacy of cannabis products comes with a risk of toxicity and high abuse potential due to the psychoactivity of THC. CBD, on the other hand, is reported to have beneficial medicinal properties including analgesic, neuroprotective, anxiolytic, anticonvulsant, and antipsychotic activities, while apparently lacking the toxicity of THC. Nevertheless, not only is the currently available scientific data concerning CBD's efficacy insufficient, there is also ambiguity surrounding its regulatory status and safety in humans that brings inherent risks to manufacturers. There is a demand for alternative compounds combining similar effects with a robust safety profile and regulatory approval. Palmitoylethanolamide (PEA) is an endocannabinoid-like lipid mediator, primarily known for its anti-inflammatory, analgesic and neuroprotective properties. It appears to have a multi-modal mechanism of action, by primarily activating the nuclear receptor PPAR-α while also potentially working through the ECS, thus targeting similar pathways as CBD. With proven efficacy in several therapeutic areas, its safety and tolerability profile and the development of formulations that maximize its bioavailability, PEA is a promising alternative to CBD.

I used CBD sublingually on its own with ok results for a few years, also taking time to work and also tapered amounts as time went on. I was much better than I had been but not completely well, like your daughter.

The breakthrough came when I added Caryophyllene and I use something called Copaiba essential oil to obtain this.

You can however get pure Caryophyllene and it is actually deemed very safe and is a food flavour additive.
Many things we use everyday contain small amounts such as black pepper, basil, clove oil, oregano however the other molecules in these sources makes their use not suitable.

Caryophyllene is a selective CB2 receptor agonist which acts on immune cells. One of the effects is that EBV infected cells are triggered to apoptose, basically irradicates the virus infected cell with enzymes and leaves nothing intact.

It also acts as an enzyme inhibitor to fatty acid amide hydrolase(FAAH).
https://www.nature.com/articles/s41386-020-00888-1

Abstract​

JNJ-42165279 is a selective inhibitor of fatty acid amide hydrolase (FAAH), the enzyme responsible for the degradation of fatty acid amides (FAA) including anandamide (AEA), palmitoylethanolamide (PEA), and N-oleoylethanolamide (OEA).

As you can see FAAH breaks down Palmitoylethanolamide so using an enzyme inhibitor of FAAH will naturally increase Palmitoylethanolamide. CBD also acts as a FAAH inhibitor.

Copaiba is also deemed safe and used to flavour food also. It has been used in folk medicine dating back to the 16th century by the natives of north and northeastern Brazil.

I have used copaiba sublingually but taste is not nice, swallowing it degrades the caryophyllene and it becomes inactive. I now vape the copaiba with a simple vape pen and it works very well.

I mix 1ml copaiba oil with 4ml base liquid and shake before use to make sure it is mixed. Best to place 1ml in a pod as heat degrades caryophyllene the pods can hold 2ml.

Here is exactly what I use, of course you will need a blunt ended wide needle and syringe to place the mixture into the vape cartridge.

https://www.amazon.co.uk/Greenwood-...4257&sprefix=copaiba+oil,aps,116&sr=8-11&th=1

https://www.amazon.co.uk/Nectar-Ref...1689674123&sprefix=nectar+hive,aps,200&sr=8-2

https://www.amazon.co.uk/Litre-Glyc...4186&sprefix=vape+liquid+base,aps,108&sr=8-16

I hope this is useful to you and others.
Congratulations for finding something that worked for your daughter I am very happy she has health again.

 

[Celandine]

Very interesting @CSMLSM ! I wish we'd found PEA earlier on. And this is the first I've heard of caryophyllene.

CBD oil wasn't a good fit for my daughter. Basically, we dropped anything that increased her headaches, and that was anything that caused vasodilation. CBD vasodilates. Loads of the popular herbal things do. Even magnesium does.

 

[CSMLSM]

@Celandine, CBD due to the FAAH inhibition raises Palmitoylethanolamide that already exists naturally endogenously I may try trialling Palmitoylethanolamide to see if it can replace CBD.

Caryophyllene was the difference between quite good and completely normal maybe it will play well with the Palmitoylethanolamide.

 

[Celandine]

Caryophyllene was the difference between quite good and completely normal maybe it will play well with the Palmitoylethanolamide.

Daughter doesn't need the PEA anymore but I'm putting this in the file of "stuff" in case she ever relapses. Thank you!

 

[Celandine]

You know, I mentioned diphenhydramine in my list as almost a throwaway. It was something that we used from very early on when she would be in my room at night in floods of tears because her headaches were so bad, but she couldn't sleep. Just needed to end her day ASAP, really. But, in hindsight, diphenhydramine could have been particularly effective because it's an antihistamine so would have helped with MCAS way before I'd even heard of MCAS. We tried all kinds of herbal sleep things as well as melatonin with no effect.

 

[Celandine]

@CSMLSM Did you use ultramicronized PEA? I think Normast and PeaPure are the two brands. I wonder if this makes a difference for absorption. That's what they claim but not sure there have been studies to back it up. Maybe your addition of caryophyllene would make up for a lack of ultramicronization?

 

[Rufous McKinney]

I think, a confluence of lymph ducts. If you poke people with fibromyalgia or ME in that spot they may scream!

I can easily feel the left Perrins point and yup, it's sore. Not at all the same on my right side. Something is definitely up with this area on the left.

 

[Seadragon]

@CSMLSM Did you use ultramicronized PEA? I think Normast and PeaPure are the two brands. I wonder if this makes a difference for absorption. That's what they claim but not sure there have been studies to back it up. Maybe your addition of caryophyllene would make up for a lack of ultramicronization?

Which brand of PEA did your daughter take if you don't mind me asking?

Thank you for this very interesting thread and what a wonderful mother you are @Celandine

So happy to read that your daughter is now doing really well.

 

[CSMLSM]

Did you use ultramicronized PEA?

I did not say I had used PEA before only that I may trial it in place of CBD. I did however point out the close relationship of the two molecules.

Maybe your addition of caryophyllene would make up for a lack of ultramicronization?

I very much doubt it will do anything to help the absorption of the PEA especially as taking caryophyllene orally renders its intended actions as a molecule void as the caryophyllene molecule is oxidised and then loses its ability to bind to CB2 receptors which is the main target with caryophyllene, which I also stated and explained that sublingual and vaporisation were the ways to take it effectively.

https://pubmed.ncbi.nlm.nih.gov/25164769/

Abstract​

Background: The fatty acid amide palmitoylethanolamide (PEA) has been studied extensively for its anti-inflammatory and neuroprotective actions. The lipidic nature and large particle size of PEA in the native state may limit its solubility and bioavailability when given orally, however. Micronized formulations of a drug enhance its rate of dissolution and reduce variability of absorption when orally administered. The present study was thus designed to evaluate the oral anti-inflammatory efficacy of micronized/ultramicronized versus nonmicronized PEA formulations.

I hope this helps you understand.