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

[Hipsman]

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 )
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?)

Spoiler: sinusitis protocol

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

 

[Wishful]

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.

 

[Hipsman]

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]

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.

 

[Hipsman]

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

 

[Hipsman]

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...

 

[Hipsman]

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!

 

[Wishful]

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.

 

[GloriaDG]

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/

 

[Hipsman]

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.

 

[GloriaDG]

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

 

[Hipsman]

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]

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.

 

[Hipsman]

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]

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.

 

[Hipsman]

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.

 

[Hipsman]

Update
Fish oil is working, benefits are remaining, thou it's not as effective as it was on first 5 days, but still very close to be considered as major improvement. For some reason it stopped working for a few days on day 5-6 may I had some sort of crash, but I don't remember now. All this time I have bee taking this 50% epa/dha fish oil, I was taking 10g, but on day 7 moved to 3g.
The way fish oil works for me is - I get the full benefits within an hour of taking it on first dose. Stops working completely if I don't take it for more then ~40h

I did LDN 3g for 2 weeks, but infectionist wasn't happy that I did it, so she asked me to stop.

- Double-Stranded (dsDNA) Antibodies
- Double-Stranded (dsDNA) Antibodies
- "Antibodies to denatured (single chain) DNA (Anti-ssDNA IgG)" - can't find proper english name
- 2 other...

All the above tests came back normal. The other 2 tests were antinuclear antibodies (IFA) and "expanded" blood test.
Note: I had elevated antinuclear antibodies (ELISA) of 1:320 (reference <1:100), but infectionist said it doesn't matter ELISA or IFA... so she thinks I don't have autoimmunity, I'm not against this becouse I don't have clears signs of autoimmunity, at least not that I can see.

Later infectionist ordered nose and throat swab, they came back without Streptococcus Pyogenes, so she thinks that there are two reasons for my problems - Intestinal dysbiosis and something with lymph...

Here is the treatment plan:
1) Erbisol (immunosimulant, immunomodulator)2ml x 2 times a day IM injection -10 days, on 11th day 2ml at evening - 10 days.
2) Traumeel (anti-inflammatory) 1 tablet x 3 times a day - 10 days, on 11th day 1 tablet x 2 times a day -10 days, on 21th day 1 tablet 1 time day - 10 days
3) some probiotic
I looked at the above drugs, they are safe, almost no side effects, I will give it a shot!

 

[Hipsman]

It's been two mounts since I finished the treatment plan above, probiotic did not improve my gut flora. Erbisol gave some improvements, but only when combined with nasal treatment, I explained what happened in detail here. I have tested positive (PCR, blood) for HHV-7 - 1000 copies. My infectionist says in med school they teach to treat with antivirals from 1000 copies, so considering that and my improvement after immunosimulant Erbisol we will try immunosimulant Immodin, she says it showed very good results when treating acute herpesviruses in hospital that she works in. It's also rated to treat CFS caused by immune dysfunction, but was never mentioned on this forums.

 

[Hipsman]

Immodin gave a noticeable improvement in energy, about 1/8 of a level on 3-level ME/CFS scale mild, moderate and severe. This improvement has faded after the last dose, but after I added vit D3 it went back up. Was it worth it? Probably.

 

[PisForPerseverance]

I suppose it’s still possible that tonsils are being chronically infected if I haven’t had sore throats in last 1-2 years?

My thought exactly. I have had some sore throats the last year or so but the constant sore throats stopped with a treatment that helped. I still get them occasionally. Did you get a biopsy? I think I'm going to do this. How's your ocd now? Your infectionist not thinking you have autoimmune causes of your symptoms because of only testing you for a few things doesn't make sense...to let you know. If you'd like to follow along this thread to investigate autoimmune causes of neurological symptoms more, would be great to have you. Especially for me to learn from people with the same symptoms. https://forums.phoenixrising.me/thr...s-to-get-the-care-we-need.84303/#post-2345795 I'll be reporting on whether my ocd gets better with autoimmunity treatment.