Daughter's recovery details

[lenora]

Back to giving your daughter dyphindramine. I've been taking one tablet/night myself. I think it helps with sleep. We have a lot of allergies, so it's possible that she had sinus problems.

Going back to the very beginning (of this particular outbreak), what at the time of the AIDS outbreak?, one of the first meds prescribed was guafenesin.....always found in something like Coricidin or any other antihistamines. The idea was that our secretions needed to be liquified, so people took it by prescription and the researchers and doctors later changed their minds.

I do take guafenesin alone (can be bought OTC cheaper than something like Mucinex). Personally, without realizing it, I do think they were on to something. Eventually, almost all of us have bad sinus problems or allergies of another type. Sinus is a particular problem, so your daughter may have been suffering from an earlier age than you assume.

Apparently it is now making a comeback....who knows?

Does anyone know which meds or vitamins were used during the outbreak in Los Angeles in the l940's (I believe) or the Royal Free Hospital in London....post polio? It would be most interesting to know, wouldn't it.
Yours, Lenora

 

[Celandine]

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.

Ah, I totally misread you! Thanks for the clarification.

 

[almost]

A couple people wanted to know more so I'm starting a thread here rather than clogging that one up. This is long! Sorry.

Thank you Celandine for posting your daughter's narrative. I found it compelling with several interesting nuggets inside that affirm some of what I am doing, and also warrant further investigation for me. It has also germinated many salient replies. I'm happy for your family that she is doing as well as she is.

 

[CSMLSM]

Yes, thank you for posting your success with using an endogenous cannabinoid (Palmitoylethanolamide)
https://pubmed.ncbi.nlm.nih.gov/238...owing,it acts as an agonist at TRPV1 receptor.

Palmitoylethanolamide: from endogenous cannabimimetic substance to innovative medicine for the treatment of cannabis dependence​

Palmitoylethanolamide (PEA) is a fatty acid amide showing some pharmacodynamic similarities with Δ9-tetrahydrocannabinol, the principal psychoactive compound present in the cannabis plant. Like Δ9-tetrahydrocannabinol, PEA can produce a direct or indirect activation of cannabinoid receptors. Furthermore, it acts as an agonist at TRPV1 receptor.

I am curious to know if you were aware of this and if not would this knowledge have affected your choice of using it for her recovery.

There is much stigma even with the mention of this vital system(Endogenous cannabinoid system) in the body.
It gets in the way of sensible discussion.

When you asked before what PEA I used and I said I had not in a way that is not entirely true as the use of the two molecules I use act as fatty acid amide hydrolase (FAAH) inhibitors and thus would raise the endogenous levels of PEA that would already exist in my body so technically I have used PEA but it was endogenous and not exogenous like what you used, if you know what I mean.

 

[Celandine]

Yes, thank you for posting your success with using an endogenous cannabinoid (Palmitoylethanolamide)
https://pubmed.ncbi.nlm.nih.gov/23896215/#:~:text=Palmitoylethanolamide (PEA) is a fatty acid amide showing,it acts as an agonist at TRPV1 receptor.

I am curious to know if you were aware of this and if not would this knowledge have affected your choice of using it for her recovery.

There is much stigma even with the mention of this vital system(Endogenous cannabinoid system) in the body.
It gets in the way of sensible discussion.

When you asked before what PEA I used and I said I had not in a way that is not entirely true as the use of the two molecules I use act as fatty acid amide hydrolase (FAAH) inhibitors and thus would raise the endogenous levels of PEA that would already exist in my body so technically I have used PEA but it was endogenous and not exogenous like what you used, if you know what I mean.

No, wasn't aware, but I have no issue with cannabis, so it wouldn't have been a moral issue for us. I think the stigma around cannabis has been clearly linked to the pharmaceutical industry trying to suppress a very helpful but unpatentable substance so they can continue to peddle their wares.

Daughter never reported any THC type psychoactive effects. To be honest, she was in such misery I would have been happy if she had! Interesting, though, as I've been taking it for the last week or so for a totally different reason and have been feeling very zoned out and depressed even. Daughter and I react very differently to things so that could be the issue for me. I'll stop it and see if my mental state lifts.

Another story---I'd ordered quite a few boxes of Normast in a pre-Brexit panic and had some spare so gave a box to my son's girlfriend to try. She has fibromyalgia and other immunomodulation issues like recurrent shingles and severe eczema. Very similar effect to that of my daughter with Normast. She didn't notice any big difference taking it but when I asked her some questions it became clear it was helping quite significantly with pain. She was working a retail job and it came out that her legs would be in a lot of pain within an hour of working. After taking the PEA for maybe 6 weeks she was reporting that she could do an 8 hour shift with no significant pain. But the reduction was so gradual that she hadn't even made the connection. And to connect back to your post, she is a nightly cannabis smoker and feels it helps significantly with pain and sleep. But she really struggles to wake in the morning. She had run out of cannabis while on Normast and found she was sleeping better and also able to wake much easier on Normast alone. (Though this didn't stop her going back to nightly cannabis when she was able to re-up!)

And one more PEA thing. Side effect for my daughter after using it for a couple months would be an increase in acne. Quite a significant increase. I looked into this via Pubmed when it was happening and it did link back to cannabinoid receptors somehow. No memory of the details. When she tapered and stopped the acne died down. And then it would increase when she seemed to get to the required loading dose again. It was almost the "tell" for when to taper for us. But then I've never seen acne reported as a side effect of PEA anywhere else so not likely something to worry about for most people.

 

[keepswimming]

2) Perrin Technique osteopathy

Hi @Celandine , since reading your post I have been looking into the Perrin Technique with some interest.

Do you think some effect could be seen from following the instructions in his book, or is seeing a practicioner vital?

I would prefer to test it at home before deciding if it's worth the time and energy of seeing a practitioner!

 

[Celandine]

Hi @Celandine , since reading your post I have been looking into the Perrin Technique with some interest.

Do you think some effect could be seen from following the instructions in his book, or is seeing a practicioner vital?

I would prefer to test it at home before deciding if it's worth the time and energy of seeing a practitioner!

I think if you do that you'll never really know. You might think it didn't work but how would you know for sure? You couldn't do the cranial stuff on yourself, for instance, and that seems a fairly important component. The practitioner also spends a lot of time assessing your body initially. Daughter's osteopath and Perrin himself says that almost all his ME patients have a certain thing (sorry can't remember what it was now) going on with their thoracic spine posture. Flattened, maybe? I feel like GPs and even consultants barely look at the body anymore. I remember doctors used to always examine your actual body. Now it seems cursory or not at all. So, in that regard, it's actually a nice thing to have someone examine you and see what they can see.

The role of the practitioner is also to observe how your body reacts to the manoeuvres and then to react to that. A constant back and forth interplay. It's not a one way process. You absolutely can't get that by doing exercises yourself.

My way of testing was to do an initial appointment. It was maybe £55, I think, for the initial then £40 for the subsequent ones. If you get no "bad" reaction from an initial treatment session then chances are lower that you'll be a responder. That's what I read when I was looking into Perrin back when. Most of the initial appointment was spent with examination and taking a history rather than treatment. But I was able to have a free 20 minute (or more) phone call prior to that for us both to judge whether Perrin Technique would likely be helpful. You could try that as a first approach. One way to save energy and money if it isn't likely to help in your particular case.

Daughter's osteopath went very minimal on the at home exercises. Only the breast aspect was really essential. Other practitioners are much bigger on that side of things. It could have been because my daughter was young and also very ill a the time she started. He didn't want to overload her. Or it could just be his style. He was the first person we saw who seemed to actually "get" ME which was such a relief to us both. I can't speak for other practitioners, but the Perrin training would certainly be not to push people beyond their limits. It was always about going slow.

It certainly doesn't harm to get the book and see what you think. There's a recent updated one that I don't have.

I guess, also, my daughter had the benefit of me driving her to the appointments and helping her. Harder if you're fully under your own limited steam. This is actually making me remember how, early on, she wouldn't be able to make it back to the car even if I was parked half a block away. I'd have to leave her there and pull right up to the door. That was a marker for us as time went on. She started to be able to make it back to the car. Then up a slight incline, Then to get a hot chocolate after the appointment before going home, etc etc. Over a very long period, though. Nothing is fast with this.

 

[keepswimming]

@Celandine that all makes sense, thank you I have ordered the book and will take it from there.

 

[lenora]

I just wanted to let everyone know that carriers that you strap to you can be found on Amazon. This is a problem for many people....the messiness. I hope it will help someone. Yours, Lenora

 

[lenora]

Why can't I be clear? In the above I'm talking about a way to keep most of messiness of castor oil packs away from us. I'm that I don' know the price.

Also, I've been to 3 different osteopaths (especially gentle ones, experts in their field). The first one literally saved my life. I had to find the 3rd one because the other 2 died.

Most of us can learn the different techniques used by osteopaths. However, I would like to warn you that it takes time and special gentleness. In this case, more is definitely not better. Your neck does not have to cracked, they have far more gentle ways of accomplishing the same thing.

To help you with pain, I'll recommend the Ace Ice Bandages....already wrapped in blue canvas and do not get as hard as a rock. They come in different sizes. I wrap mine in a very light cloth, and to stop pain in most places you can actually lay on it directly over the spinal column. 15-20 min. on and then off. These have been lifesavers for me and I always have some in the freezer. These can be frozen over and over again.

Acupressure is another good one to learn...probably much like the Perrin Technique, but be gentle and don't move too fast. Try different sites, but study diagrams first. I had no luck with 3 true rounds of acupuncture or massage, for that matter. However, we're all different.

My neurologist listened and encouraged me to try alternative medicine. He was very open minded. Wishing all of you pain free days. Yours, Lenora

 

[Celandine]

@keepswimming Also wanted to say that supporting your liver with Milk Thistle and also making sure to drink lots of water when doing Perrin/lymphatic drainage is important.

 

[Mick]

What do I do after performing Perrin/lymphatic drainage? I got some kind of malaise that I usually get when I get PEM but it's not PEM yet. So should I rest and let the fluids drain out or should I continue with the drainage? Well, I guess I could try both ways on two separate occassions. Obviously this should get better with time (or not - our bodies react differently). Problem with the lymphatic system is for sure one of the parts of my problem with CFS. It's a pity that I figured out this so late.

 

[Mick]

Is it possible that this inflammation caused by lymphatic system blockage is so severe that it causes inflammation in muscles? It feels this way - first I get "lymphatic inflammation" then muscle inflammation (tenderness) then it ends with PEM.
What is the mechanism behind PEM in this case? Is it purely inflammatory? Can increased inflammation cause even more blockage in the lymphatic system thus causing positive feedback loop? (more blockage will then cause even more inflammation etc.)
I know, these questions do not have good answers yet, but don't hesitate to speculate.

 

[keepswimming]

Since reading this post I have looked into the Perrin Technique in some detail, and decided to try doing the home exercises. I built up slowly, as I heard the toxic drainage symptoms can be heavy (although a positive sign that it's working).

My first impression of the exercises was doubting they would do anything! They seem very gentle. However, as soon as I started the lymphatic drainage I got toxic drainage symptoms. They made me feel very sick, and spots appeared on my face. Within minutes of doing the exercises my tonsils would swell up. This convinced me they must be doing something.

I have now been doing the exercises for four months and I have had some small but significant improvements. Every month my step count has increased - I haven't been deliberately doing more, so I must be pottering around at home more. I do a lot of writing, normally I lie down and type on my phone, but recently I have been able to do much more handwriting, sitting upright. My recovery times have also improved. Things that would have taken me three days to recover from are now taking one.

After five years of illness this is the first time I've seen any kind of improvement, so I have decided to go for it and do the full treatment with a practitioner. I start in January.

 

[keepswimming]

@Mick I'm no expert! However my understanding is that increased symptoms after the exercises is a good sign that it's working, however you want to keep it at a level you can cope with and not overload. So I would say it depends how bad your symptoms are, whether you decide to continue, or alternatively ease up on the exercises and give yourself chance to recover. Personally I built up very slowly with the exercises and only increased once my initial symptoms had calmed down.

I'm not sure about your questions about muscle inflammation and PEM. I will say if you want to know more about the theory behind the technique it's worth buying Dr Perrins most recent book (he has two, one is a smaller handbook for patients, but the other is for practitioners and patients which has his theory in it in detail). I know he believes there is a backflow of lymph caused by a disfunctional nervous system, and he does talk a lot about reducing inflammation.

 

[Mick]

Oh, boy, last night was terrible for me. I stopped taking meloxicam and it wore off right in the middle of the night and the pain in the fat/subdermal tissue became unbearable. I twisted and turned like crazy, I could barely sleep. Now I'm back on meloxicam and back on other things (more on that later).

So, the conclusion is that it's some kind of panniculitis (subdermal tissue inflammation) due to antitrypsin deficiency. I've known for decades (literally) that I have antitrypsin deficiency, I also have a genetic confirmation, I am MZ genotype. Last time I tested antytripsin in blood, the result was 0,85 g/l and the normal range is 0,9-2,0 g/l for this lab. So, it looks like that is below normal range but actually you can find normal ranges as low as 0,75-1,5 g/l.

The problem with antitrypsin as low as mine is this: I may need much more, like 1,5 g/l, all the time, and even more if I there was strenous physical activity or a disease. If I have such prolonged functional deficiency then my fat tissue may and will be degraded by proteases over long run. And I these more severe symptoms when the fat tissue burns started around 2 years ago. But 25 years ago many lipomas started to develop and I associate them with this antitrypsin deficiency because it always went like this: injury or phyical strain -> local inflammation of fat tissue -> lipoma.

But I never associated antitrypsin deficiency (even though one might call it subclinical) with panniculitis.
The problem is that even though I'm sure this is it, actually it is a very low grade panniculitis.

If you take a look at the picture here:
https://openres.ersjournals.com/content/9/2/00546-2022

the guy there has lesions. I don't have any lesions. But his antitrypsin level is zero and he got panniculitis at age of 17. I first noticed the symptoms for real at age of 41 years.

When it comes to lymphatic drainage of the tissue, it is sometimes recommended:
https://www.lpgmedical.com/en/wp-co...2016/09/1439210468873marquez_rebollo_2014.pdf

But notice that it's not lymphatic drainage/massage per se, it's something called endermology. Some kind of vacuum suction.
But for now I guess I will not try any drainage nor anything like that.

I will take more elastase inhibitors even though I take them all the time.
ECGC (green tea) is effective here and many others like white tea which is supposed to be the best in this respect. So, maybe it's worth a try.

I will also have antitrypsin tested on Monday (unfortunately today is Saturday, past office hours, what a bad luck). Even if antitrypsin is high (because during inflammation it tends to get high) then it will prove that it is possible for me to have higher values. And if it's even lower than that's fine too.

And what else can I do?
Usually this is investigated by performing a subdermal tissue biopsy. But one needs to have a referral.
That will be a problem if I don't have lesions.
And even if I was able to get some doctor to perform a biopsy which part of the body should be biopsied? That's the question.

Here:
https://www.webmd.com/skin-problems-and-treatments/what-to-know-about-panniculitis
they say:
Panniculitis often takes multiple biopsies to diagnose, which can be difficult because of the tissue samples needed.

Just great... I bet they order multiple biopsies... right after the first one which will be inconclusive they will send me away...

Maybe I could get a prescription for steroids? I don't know...

So these are the problems with a disease that is not clearly showing...

And yes, this problem with antitrypsin seems to cause fatigue and inflammation throughout my body. This is a known cause of fatigue but there's not much one can do about it. Antytripsin infusions could help but the price and availability are prohibitive.

 

[chilove]

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-



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


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

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-Essential-Copaifera-officinalis-Therapeutic/dp/B08KY3MGYG/ref=sr_1_11?crid=2I9C97GB3I4RS&keywords=copaiba+oil&qid=1689674257&sprefix=copaiba+oil,aps,116&sr=8-11&th=1

https://www.amazon.co.uk/Nectar-Refillable-Charger-1000mAh-Activation/dp/B09N2WNRRF/ref=sr_1_2?crid=269P6RYD3HFTQ&keywords=nectar+hive&qid=1689674123&sprefix=nectar+hive,aps,200&sr=8-2

https://www.amazon.co.uk/Litre-Glycerine-Glycol-Liquid-PHARMA/dp/B07JNMXYXM/ref=sr_1_16?crid=2JB5HNA0UC86G&keywords=vape+liquid+base&qid=1689674186&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.

Hi! I'm interested in trying the vaping method but the links aren't working for me because I'm in the US. Can you please tell me what I need? Looks like vape liquid and a vape charger and the actual oil maybe?

How many hits do take each time and how many times per day?

Thanks so much,

Audrey

 

[Emeline]

A friend of mine had major improvement (going for mostly bed bound to remission) from the Perrin Technique, which triggered me looking into it. There are no Perrin Technique practitioners locally for me, but a lot of the Perrin Technique is lympathic drainage, so starting today, I'm seeing a physical therapist specializing in lymphedema.

I got my first massage today and here are my notes, both for myself and anyone who’s interested.

- Key lympathic areas coordinate with key arteries, so neck, armpits, and upper thigh/groin.

- if you want to wear more than underpants for modesty go with low waisted, loose shorts and a loose top.

- it’s important to drink a lot of water before and after so that the toxins that get moved by the massage can be filtered by the kidneys and peed out.

- during the massage I was instructed to do belly breathing (she called it something else I can’t recall) (breath in through the nose into the belly (not the chest) and the out through the mouth like blowing out a candle)

- sometimes during the massage you can feel tissue breaking up apparently? I was focused on breathing correctly and didn’t notice anything.

- immediately afterwards my upper chest felt looser and the lymph nodes in my neck felt funny. Not good or bad, just different

It’s only been two hours since I finished but I’d like to track this as I go

 

[keepswimming]

@Emeline thank you for sharing your experience, I hope it helps you.

Some interesting points there, thank you. I have had three sessions with a Perrin practitioner so far. I'm going to be more mindful of drinking plenty in future, thank you for the advice

Just one thing to be aware of, I'm not sure but I believe some of the strokes Dr Perrin recommends may be in the opposite direction to a normal lymphatic massage, as he believes there is a back flow of lymph which needs correcting... If there are no Perrin practitioners nearby he advises that a professional may be able to follow the instructions just from his book, the treatment is explained in full in there.

 

[Emeline]

Just one thing to be aware of, I'm not sure but I believe some of the strokes Dr Perrin recommends may be in the opposite direction to a normal lymphatic massage, as he believes there is a back flow of lymph which needs correcting

I didn’t know this! Thank you for telling me, I’ll let my PT know so she can look into that!