Finally "found" something?

[Thinktank]

I've been having difficulty breathing and experiencing "air hunger" for quite a while now. No doctor has ever recommended me to do a basic yet very important test; an x-ray of the chest.
I did one last week during a routine health checkup with EKG and exercise stress test. Everything came back normal except the chest x-ray. Compared to my previous CT/PET scan from August it looks like something is growing somewhere deep inside my lungs.

I've been to a very good pulmonologist today and he was speechless about the approach and testing methods of the doctors i've seen before. He took more than an hour to discuss my medical history and told me he tries to see and treat the body as a whole. I've heard functional practitioners, naturopaths etc. saying that but a conventional doctor? He must be good then! He even showed interest in all the testing i've done with private labs like genova and metametrix which he made copies from.

He believes i've some kind of viral or bacterial infection or a combination thereof that has gone systemic. The first thing to do is to rule out the most common infections like TB and KP. Got a DPP skin test, a series of x-rays and a sputum test for culture today and have a follow-up on friday with a complete pulmonory function test.

Is there anyone here who has or had a serious bacterial/viral/yeast infection in the lungs that has spread to other parts of the body?

 

[Thinktank]

I did a complete pulmonary test today that took around 1.5 hours to do. It really sucked the life out of me.
The test came back abnormal, based on the test and my medical history and symptoms i seem to been having asthma... my whole life long. Also my nostrils seem to have thickened up probably due to allergies.

Docs in my home country always told me i have "sensitive" airways with episodes of bronchitis but never really tested me and now i'm paying the price for their incompetence.

The series of x-rays show the stuff is still growing inside my lungs which also look unclear. I don't smoke and stay away from volatile fumes so the doc. is puzzled about that.
He wants me to do a CT-scan and probably a bronchoscopy with biopsy to find out more.

He prescribed me some medications like singulair, claritine, avamys nasal spray and symbiocort turbohaler but i'm not going to use it yet. I'll probably feel better on it but i have an appointment with Dr. KDM soon and i want to hear his opinion. On top of that he wants me to use an antibiotic to get rid of the klebsiella pneum. that showed a very high growth in my last stool exam.

If it's asthma then maybe that's the reason why i breathe so well while on a good quality NAC supplement.

 

[Thinktank]

Forgot to mention, Tuberculosis PCR came back negative as well as the DPP skin test for TB.
So what might there be growing? I think the best way is to go with the bronchoscopy and biopsy and then have it cultivated.

 

[Asklipia]

Hi Thinktank,
I am glad that you finally found something. This is a very positive development.
And I do believe that at least whatever was wrong with me and my husband had to do with the lungs. So you might be on the right track there.
We both had parents who had had TB and are immune to this. My husband's lungs were kind of underdeveloped for his size. I have very fine lungs with big capacity and never a problem (I was a long distance swimmer all my life, and I practiced yoga of the breath and singing all along).
When we met 25 years ago he stopped smoking and his problems slowly appeared. I never smoked.

I did notice though that all the people I met with ME did not smoke. Or got ME when they stopped smoking. Of course tobacco is a powerful antiviral and antifungal.

Any amount of fake folates (and this includes MSG and folic acid) will lower resistance to mycoplasma and mycobacteria. We most probably were hosts to those long before we got sick, but increased stress and sudden huge amounts of MSG and folic acid added to our food, plus maybe the dissemination of new types of mycoplasma made us sick.

I have been practicing daily an exercise to unblock the lymphatic pump behind the heart for more than 120 days now. After two weeks I found I was coughing up greenish or white sputum while doing it and even all day long. I was very surprised because I thought that my lungs were fine. No doctor I went to ever found anything wrong with them, I have absolutely no asthma and breathe more slowly than anyone I know. Never ever out of breath. I can only think that this exercise brings out lymph into the lungs from the pump behind the heart and disposes of it that way.
This has lasted for about three months until I felt all was clear.

I am still doing this exercise because I feel that if I do not do it for more than 3 days, I start bringing up phlegm again when I do it.
I think the hypotheses of Dr Perrin are right. And that there is or are infectious whatever living in the lymphatic system and that by pumping them out you gain the upper hand.

Obviously if you can identify them (which I could not for a lack of any doctor ready to look for them) and attack them with the proper chemical, all the better.
The only thing I would do next, if I had such a chemical, would be to try to deliver it not orally but directly by inhalation.
At the moment after my exercise, when my lungs are very irrigated by the movement and emptied of stagnant mucous as much as can be, I have added an inhalation of vapour (not smoke) of a kind of oregano. A very tiny bit of it because it is quite corrosive but a fantastic antifungal and antiviral.
This inhalation I do not do every day. I have done this for about three weeks now and I think it is extremely beneficial.
I noticed yesterday that I could memorize a whole song in one hour, enough to improvise on it, something that I could not do for the last ten years. If oregano does this to the brain, it means that whatever is wrong is at least partly due to an infection.

To sum it up, I think that we can act on the lymphatic system through the lungs and that the problem is probably not in the lungs themselves (even though it might come to that, and that they might be the point of entry of whatever infection is going on).
And I think that a mechanical action is not to be despised, along with chemicals. At least you can't poison yourself with a set of exercises.

Lots of good wishes! May you be cured completely very soon!
Thanks for providing all these details about your search.
Asklipia

 

[Thinktank]

Asklipia,

Yes, i'm glad i finally found something but it's yet another piece to add to the puzzle.

Could you please tell me the name of the lymphatic exercise you are referring to? I had a whole body PET/ct scan done not so long ago and it didn't show any abnormalities in my lymphatic system. Maybe it can look all normal but still harbor pathogens?

I've borderline IgG ab for mycoplasma, don't know if it means anything in relation to lymphatic infection?

soon I'll be tested extensively for bacterial and viral infections, i'm sure something will come up.
Doesn't the oregano sting your lungs? I tried it as oral drops but couldn't stand the burning feeling.

 

[heapsreal]

Chlamydia pneumonia is a common chest infection which can go systemic and is a common bacterial infection found in cfsers. This infection isnt related to sexual chlamydia infection. Generally long doses of multiple antibiotics are used.

Cheers

 

[heapsreal]

Also mycoplasma pneumonia.

 

[Asklipia]

Thinktank
The exercise is a Yoga exercise, fairly rare and there is no real link on the Internet. You can see it here :
http://kriyas.ru/node/202
But there are no pictures. If you send me a PM with an email I shall send you a pdf with drawings and my copious explanations, most of them to explain how and why this exercise works on the lymphatic system in a way beneficial to us.
I have discussed my experience with it on the LED thread: http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/page-2 and it goes on. You can PM the people who have tried it, they may have kept doing it.

And here : http://forums.phoenixrising.me/index.php?threads/i-have-half-of-a-sore-throat.24089/#post-369111
If you want to understand how lymph and ME/CFS may be related you could do a search on Dr. Perrin.

Oregano stings awfully. I only use ONE leaf to vaporize it. I do not burn it and smoke it. I do NOT use oil. And this only every other day. It does not sting that way.
I also used for years a Vicks inhaler, like a lipstick tube that you stick in one nostril. Quite relaxing and now I understand why I got relief from this. Careful that there are different compositions for this Vicks stick, depending on the country in which you buy it. Some I do not approve of.

I have tried all kinds of things orally over the years. This is not helpful on the stomach to say the least.
I found that the good old methods work best, that I used to resort to when I was my only doctor around :
1 - If you think you are really cured, try a couple of beers with a few sweet cakes : if the nasty is still alive, you relapse.
2 - Testing very much depends on the person looking at the slides - this is half of the problem : never entirely believe the result of a test, the laboratory assistants in different countries are trained to watch for different things so if you can afford it it is a good idea to have the same tests done elsewhere, if possible in countries where they do not learn from the same US manuals. In the old times before all this testing was available doctors would prescribe half penicillin half cortisone. Get rid of the infection if possible, or of the inflammation that allows it to perpetuate itself, or both. Very often effective.
3 - Increase blood flow in situ for oxygenation.
4 - Keep the patient hopeful while it lasts.

I found that after a few years #4 was the hardest. The fact that I am now deliriously optimistic, even if it is not a sign of a total cure, is certainly one of the ways to achieve it.

#1 I tried several times, and it is for me the sure proof that something nasty was feeding on sugar and alcohol in our case.
#2 I did not try because I would have preferred to know exactly what was the problem and the antibiotic related to it before medication. Gobbling up that stuff can be bad in the long run, and I did not want to reduce our chances of total recovery but taking just whatever the last medical salesman had recommended to my doctor.

So I tried #3. Of course being fatigued did not help with exercise. I tried a bit of oxygen therapy but it was not helpful at the time. Somehow I felt it was forcefully depleting my last reserves of energy.
BUT I found a way to increase oxygenation at cell level with the Bohr effect. I felt better doing yogic breath work which increases NO and thus oxygenates without burning (so I felt).

I found much relief from a #5 (described here : http://forums.phoenixrising.me/index.php?threads/bains-dérivatifs.15574/) which is a way to get rid of lymph (not tiring even if you are nearly bed ridden).

And I have added a #6 from reading Perrin's book: I realized I had learnt an exercise that was just doing what Perrin advises : to drain stagnant lymph from the head into the liver. I could not do it when I learnt it, not even for 3 minutes, actually I passed out the first time I tried. But having read Perrin, I thought my exercise was worth a try, and as I am fairly obstinate I kept at it until a few weeks later I was able to do it with the full timings.

So waiting for the ideal doctor we have done a maximum of #3-5-6. And I think we are cured. Certainly there were infections and they might still be here, but we can drink beers and eat cakes, so I suppose life is tolerable We have considerable stamina and very happy mood.

I am sure there is a viral/bacterial/fungal component to this.

Good luck and best wishes!
Asklipia

 

[Thinktank]

Asklipia, thanks for all the info. I will take a look at Perrin's book.
Are there any studies done on the exercise you are doing?

It's great to hear you are cured and still sharing valuable information on the forum, thank you for that. I think most people who get cured or improve usually just vanish without sharing what has helped them so much.
I will send you a PM soon.

I've seen the pulmonologist and neurologist today again and also got the results from my brain MRI, brain EEG and montreal cognitive assessment test.
Neurologist said my brain MRI is clean, EEG is normal and i scored highest 30 out of 30 with the Montreal cognitive assessment test. That's a big relieve for me because i've inflammation and unspecific lesions in almost every organ in my body. It's unclear to me though why i scored 30 / 30 with the cognitive test because i'm having brain fog all the time and can't even remember my mobile phone number.
The neurologist therefore "labeled" me with ADD (LOL) and some other psychocrap. She therefore referred me to a psychiatrist (LOL again) who probably wants to put me on a range of psychotropic medications. I just said thank you for your time and left the office.

I tried to explain i have CFIDS and there are loads of causes that might contribute to my cognitive impairment. For example the inflammation in my gut irritates the enteric nervous system that can lead to a list of cognitive symptoms. I have bacterial dysbiosis, bacterial and viral infections that also lead to cognitive impairment. My liver is probably not functioning well due to the innumerable lesions etc. and the list goes on.
The whole medical system is so messed up. "Specialists" don't know how the body really works, they fail to understand or see the connections, then prescribe you wrong medications and that's how you get sick - going a downward spiral.

The pulmonologist who does see and understand the connections in the body had to laugh about the neurologists diagnosis, shook his head and reassured me i'm not crazy. Or am i?

 

[Asklipia]

Thinktank
First let me reassure you that you do not sound more crazy than the next person (that being me the touchstone of all normalcy of course).

I will take a look at Perrin's book.

There is little in his book more than what you can find explained in all the posts everywhere written by people who liked/disliked his theory BUT it is all in one place, did not take such a long time to read, and since I heartily agree with him, I am glad that some money went to him and that in this way this goes towards insuring that the book gets reprinted/distributed and that more people can be helped by his methods.
http://www.amazon.com/The-Perrin-Technique-chronic-syndrome-ebook/dp/B00APDUOOY
I had found his theories interesting but it is only when I started reading the book (which I bought because his theories looked interesting) that I understood the link with the exercise I had learnt years ago. The book made me think.

Are there any studies done on the exercise you are doing?

Zero. This exercise is a Yoga sequence supposed to help the upper body. I was taught that exercise years ago and told it was a good way to improve the back and neck of people who had calcification/osteoporosis problems in that area (in fact problems with the dissemination of calcium leaving its proper place and being stuck where it should not be). Now this is fact is related to ME/CFS I found out.
When I read Perrin's book I understood immediately that that exercise could IN PART replace the Perrin Technique as offered by a trained professional. At that point I felt cured but I thought : if Perrin is right, and if I am cured, then I should not encounter terrible difficulties doing that old exercise! Let's see, let's do it and fix my dowager's hump and prove that I am cured!
So I did it and I COULD do it!!!!!! Of course I started with reduced timings but after a few weeks I could do it properly every day and I felt all my strength and clarity coming back (maybe I was 95% cured then and now I feel 110%).
Having read Perrin's book I now understand how subtly the exercise works, and that it works on lymphatic distribution.
This has a Pandora's box of new understandings and ideas. Including that the exercise, by fixing the problem of calcium deposits and osteoporosis, is doing that NOT ONLY in the neck, but elsewhere too, that is REVERSING the flow of calcium when it is going in the wrong direction. Priceless! It takes time to get the full effects but it worked on me. And it worked even more because it proved to me that my hypotheses were right.
I have two students who have done it for more that 4 months every day. Both have received benefits, huge benefits but they never had ME/CFS in a visible way (could have been on the way to it though), so this is the total of my study!!! One of them has seen her vision improve considerably. The other has become extremely happy and optimistic.
Perrin himself says he does not know why the lymph stops flowing as it should, or rather, why after being misdirected because of an accident of life the lymph does not go back to normal. He just says, make the lymph flow as it should, and most of the nasties that live in it when it is not flowing will disappear. It is worth a try I thought.

It's unclear to me though why i scored 30 / 30 with the cognitive test because i'm having brain fog all the time and can't even remember my mobile phone number.

I am really happy that you are not as damaged as you think. Of course, this is one of the reasons why we cannot get proper medical help. I have up to now not ever met a doctor who was not vaguely jealous of my physical appearance, because I did not look as bad as I felt. Maybe they were not feeling that good either?
There is a moving distance between how we feel and how we could feel, given the same exact exterior.
This is why ME/CFS is being relegated to the psychological area. But we feel with neurotransmitters and feeling is physical.
Now you have made me say it : I do not believe there is ANYTHING purely psychological.

This is too long and too much information at once. Sorry if it brings brain fog. Just read it part by part.
Lots of good wishes and keep plenty of hope!
Many thanks for sharing your trials : these are nuggets of knowledge I shall make good use of if I can. Seeds for more thought.
Asklipia

PS : If I could undo all the massages I had in my life, even paying for that reversal with good money, I would do it. I now know that having someone else push around in my body lymph that might have been contaminated and that my body might have good reason not to allow in some places was not a good idea.