Chronic Sinusitis +Streptococcus group A infection can cause my CFS?

Messages
39
Likes
40
Location
Kiev, Ukraine
Couldn't find any information on this, so I will tell why I'm optimistic that this is the cause of my CFS, and hopefully someone can relate or give helpful resource to study this further...
My background:
I developed chronic maxillary sinusitis after sleeping under air conditioner in a hotel when I was 7, had lots of green mucus until I was around 8-9, then it drifted away a bit, but still had some white mucus coming out every 20 mins in active hours, and around 16 y/o (2016) it got more frequent, I think. At the same time my CFS started to manifest with neurological problems like concentration fatigue, heightened anxiety, and similar things. Starting January 2017 I started feeling general fatigue and tiredness unrelieved by sleep, my activity level would be 5-6 from there on forward. In 2018 I discovered subfebrility (temperature elevated to 37.4°C during day), mild tachycardia and frequent urination (last two I think has to do with sympathetic nervous system dysfunction). These remain to this day.

I'm from Ukraine, and there is no restriction on seeing Drs, so you can see as many as you want, I did some examination and lots of tests, one Dr found selective deficit of NKT-cells(CD3 +, CD56 +), chronically reactivated HHV7 + TTV infection and streptococcus infection with PANDAS (that's group A streptococcus).
I think that Dr used this Antihyaluronidase test to diagnose PANDAS dsgdhgjhjk.PNG )
He wants to use ceftriaxone 1milion intravenously 10-14 days, then cefuroxime 500mg x2 daily 16-20 days to threat Streptococcus. I will discuss this with other docs.

Ok, so why do I think Sinusitis is the cause of my CFS?
I have treated my sinusitis with protocol below, and just after 3 days of starting I noticed big improvement in energy, unfortunately in only lasted 7 days, and it didn't improve my sympathetic nervous system function (I'm reading the Perrin technique book, and it says there that sympathetic nervous system is compromised by immune system deficit long before CFS develops, witch I think applies to me because infection that caused sinusitis probably stressed immune system all these years. Can Streptococcus group A do this?)
Take the onion juice, dark soap (household) - grind, add oil, alcohol, milk, honey. Put everything in one container. Make a "water bath" and wait for the soap to melt. When the mixture has cooled, it can be applied. Take a cotton swab and dip it into the ointment. Then three times a day, insert into each nostril for 15 minutes. This procedure should be done for three weeks
Very curious to hear your opinion :)
 
Last edited:

Wishful

Senior Member
Messages
1,766
Likes
2,844
I think that any immune system activation event has the potential to trigger ME. I also believe that a chronic infection can worsen ME symptoms, as well as the symptoms of the infection. Treating the chronic infection could reduce the extra symptoms, but probably won't cure ME, leaving the patient with some level of ME symptoms.

ME has the annoying feature of having treatments that work for a short period, and then stop working and never work again. We don't know why it works this way, it just does.
 
Messages
39
Likes
40
Location
Kiev, Ukraine
I think that any immune system activation event has the potential to trigger ME
ME has the annoying feature of having treatments that work for a short period, and then stop working and never work again. We don't know why it works this way, it just does.
Are you familiar with Perrin’s explanation of ME? he has studies validading his approach, here’s 6 part lecture.
Basically, it’s not the infection itself, but toxins produced by stress on immune system that have problem exiting our bodies, this build up of toxins cause problems, at least that’s true for most patience, I think the key in my case is to eliminate the active infection, that has lead to ME, then with Perrin technique I can drain away the toxins, and everything should work properly, witch will lead to remission. I will find out if this is the case in next 6 mounts.
I don’t know how to explain why I had partial 7 day remission if it’s toxins that are the cause, because they probably on the same level at that time. I will try it again and see if it works thou)
 

Wishful

Senior Member
Messages
1,766
Likes
2,844
No, I haven't heard of Perrin's explanation of ME before. Do any of his explanations say just what the toxins are, and why no one has yet been able to detect them and thus verify his theory?

I think I'll await evidence from controlled studies.
 
Messages
39
Likes
40
Location
Kiev, Ukraine
No, I haven't heard of Perrin's explanation of ME before. Do any of his explanations say just what the toxins are, and why no one has yet been able to detect them and thus verify his theory?
He explains what he calls "toxins" in his book. There were studies es early as 90s, in 2017 was one that made into popular medical magazines, I’m too lazy to look up names, but here’s good thread that critically discusses his technique
These "toxins" are in the brain, they travel via lymphatic system, everyone has them, but in ME they poorly travel from the brain away, witch causes bild up of toxins. He validated this in his 2017 study. Details in the lecture I linked
 
Last edited:
Messages
39
Likes
40
Location
Kiev, Ukraine
I have tried my sinusitis protocol again, and it worked! But only for 4 days this time:( It's like I have 20kg basket all the time on my head, and it has been lifted for 4 days, I felt relieved from head pressure, tiredness, brain fog and mostly from tics, chorea movements and blinking .
I simplified the recipe and discovered that it works better by keeping your head vertical while sitting, instead of lying down like I did it before. Also I did it for 5-6 mins instead of 15 like before.
Take onion juice (2 teaspoons), add oil(2 teaspoons), honey (1 teaspoon). Take a cotton swab and dip it into the ointment. Then three times a day, insert into each nostril for 6-5 minutes.
I also tried Sinus Massage, breathe in steam from a pot of warm water, and placing warm, wet towel on face; last one is the most effective of the 3
This therapy is for now, before antibiotic treatment.
Btw, subfebrility of 37.4 °C during day is gone now, it seems...
 
Last edited:
Messages
39
Likes
40
Location
Kiev, Ukraine
Update: My infectionist is not sure about imunologist's PANDAS diagnosis and abx treatment for it, she says that it would only work in (don't know the right translation)"aggravation" period of strep/sinusitis. She ordered tests to find out where autoimmunity is coming from
- Double-Stranded (dsDNA) Antibodies
- "Antibodies to denatured (single chain) DNA (Anti-ssDNA IgG)" - can't find proper english name

- 2 other...
I will post update from next consultation in about 3 weeks

My sinus protocol haven't worked since august update (infectionist thinks it's because my body gets used to it...)
I'm now doing fish oil 10g a day protocol from here it substantially improves my energy and brain fog. Now I can do lite work on computer without getting much tired, or restore energy by watching something. Before this protocol I needed to lie in quiet room with a pillow covering eyes to restore energy at about the same rate.

Also, I will not do any Perrin technique stuff, but have seen an osteopath to restore spine abnormality of one shoulder being 3 cm lower that other one. After spinal alignment I feel much better blood flow and a bit more energy for a few days.

Edit: shortly after sinus protocol in august suitability came back!
 
Last edited:

Wishful

Senior Member
Messages
1,766
Likes
2,844
My sinus protocol haven't worked since august update
ME is notorious for treatments that work well at the start, but then stop working after a period of time (week or two?) and then never work again. This nasty disease just seems to adapt and return us to the ME state. Your protocol might have altered cytokine levels or whatever, which reduced your ME symptoms, but then your body adjusted to that change and went back to making you feel ill.
 
Messages
39
Likes
40
Location
Kiev, Ukraine
Your protocol might have altered cytokine levels or whatever, which reduced your ME symptoms, but then your body adjusted to that change and went back to making you feel ill.
around a year ago I have tried 1g fish oil, worked for 3-4 weeks, still hopeful high dose will do better.
Hey! I would suggest you to read this story of a girl who found out that her cfs was caused by occult Strep infection (which became ultra resistant to antibiotics) and recovered fully by removing her tonsils. It might resonate with you.
https://forums.phoenixrising.me/thr...atment-occult-strep-infection-my-story.76909/
Fasinating story:). I suppose it’s still possible that tonsils are being chronically infected if I haven’t had sore throats in last 1-2 years? Otolaryngologist gave me tonsillitis diagnosis, but I dismissed it till now. I think tonsils biopsy may be the way to rule this out.
 
Last edited:
Messages
40
Likes
82
Fasinating story:). I suppose it’s still possible that tonsils are being chronically infected if I haven’t had sore throats in last 1-2 years? Otolaryngologist gave me tonsillitis diagnosis, but I dismissed it till now. I think tonsils biopsy may be the way to rule this out.
If you have a diagnosis of tonsillitis, maybe you can tell this anecdotal story to your doctor and see if there's a way to investigate this possibility. Well done on researching your own case anyway :)
 
Messages
39
Likes
40
Location
Kiev, Ukraine
ME is notorious for treatments that work well at the start, but then stop working after a period of time
Well done on researching your own case anyway :)
I think having safe and accessible treatments like this working, even if only for a day is tremendously helpful b/c we are most vulnerable when were lost and trying to find out what's wrong. I learned this when best immunologist for cfs (best in all post Soviet Union countries, has visitors coming from far lands of Russia) diagnosed and prescribed expensive (for my country) treatment plan(didn't publish it here, but it had medication manufactored by fab owend by his boss) if not for sinus protocol I would have done his treatment plan and while I can't say what the results would be, but I feel like now I'm doing it in a better way.
and then never work again
Unless your talking about different treatment, they do work again, sometimes.
 

Wishful

Senior Member
Messages
1,766
Likes
2,844
Unless your talking about different treatment, they do work again, sometimes.
We all respond differently, but for some of us, it seems that some treatments simply stop working and then never work again. Prednisone worked great for me the first two times, but I tried it again a couple of times months later and then years later (at double the dosage), and it had no effect. Several other treatments followed the same pattern. It doesn't guarantee that they absolutely will never start working again, but I think the probability is quite low.
 
Messages
39
Likes
40
Location
Kiev, Ukraine
High dose fish oil stopped working on 5-6th day, energy and brain fog is back just like before starting it. The only benefit still noticeable is I'm much less slow and better at phone calls and communicating face to face, I hope it remains.
I'm starting low-dose-naltrexone very soon, I'm doing a setup like this.
 

Hip

Senior Member
Messages
12,946
Likes
23,895
Have you seen my thread on an advanced technique for nasal irrigation? Maybe if you are getting benefits from addressing sinus issues, a thorough sinus washout might be helpful.

You can even add some bacterial biofilm busters to the nasal irrigation solution, such as say 0.5% N-acetyl-cysteine (NAC). So for example if you make up 100 ml of warm saline for nasal irrigation, you can add 500 mg of NAC. I've used 0.5% NAC for nasal irrigation myself.


Chronic sinusitis has certainly been linked to chronic fatigue — see this study.
 
Messages
39
Likes
40
Location
Kiev, Ukraine
Have you seen my thread on an advanced technique for nasal irrigation? Maybe if you are getting benefits from addressing sinus issues, a thorough sinus washout might be helpful.

You can even add some bacterial biofilm busters to the nasal irrigation solution, such as say 0.5% N-acetyl-cysteine (NAC). So for example if you make up 100 ml of warm saline for nasal irrigation, you can add 500 mg of NAC. I've used 0.5% NAC for nasal irrigation myself.


Chronic sinusitis has certainly been linked to chronic fatigue — see this study.
Thank you soooo much Hip, this is exactly what I am looking for! I feel bad for not finding your thread earlier, it's a rare gem of information and I'm definitely going to do it with NAC!! I will try to find the full paper and show it to my Dr. Using ncbi and other med sites is very different than online searching I'm used to, but I will learn.
Edit: Full study.
 
Last edited: