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Joined: Sep 2015
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Fourth_Degree_AS_Kicker
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Good morning All:

Yes, as L33 points out that the author, Gabriel Martins, of the book stated that he needed about a year for his body to do a lot of repair after his immune dysfunction was remedied.

Arindam has said similar in his post, AS Controlled, https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=518341#Post518341

A couple of days ago I finally downloaded Gabriel's book. It took only half an hour to read. If two medical experts can diagnose him with AS and he can cure himself with antibiotics then more doctors need to open their minds to the idea that there is more than a single cause and that doctors have to be willing to practice individual, customized medicine for illness related to dysregulated immune system.

I think that Dr Richard Horrowitz is leading the pack on the concept of Multi Systemic Infectious Disease Syndrome -- MSIDS -- where the syndrome is the different diseases of AS, ALS, Diabetes (type 1), Lupus, Lyme, Parkinsons, MS, Reactive Arthritis, Sjorgens Syndrome, etc., and how infections drive those symptoms through a persons immune system to their genetic weak spots.

Of course there are some disease that do not need an environmental trigger. Are they more rare than environmentally triggered ones?


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
Joined: Sep 2015
Posts: 305
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Fourth_Degree_AS_Kicker
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L33:

How would you rank the following on a scale of 0 to 10 at two points in time. Immediately after finishing the antibiotics and now (30 days later).

Disease activity:
Burning:
Inflammation:
Stiffness:
Pain:
Gut health:

Perhaps those are too general.

I would have expected burning, inflammation and related pain symptoms to immediately go away by the time you were done antibiotics if infection is the cause. Stiffness and some minor related pain would take a lot of time to reduce as rehabilitation occurs, undoing the damage that long-term inflammation has caused.

Would you consider that the effect of the antibiotics was really suppressing your immune system hence suppressing inflammation and pain? After the immune system recovered then the symptoms should return to what they were prior to the antibiotics; I imagine!

Since my pain is not so serious and my life is not in threat I am about to opt for trying colostrum as an antibiotic source instead of a pharmaceutical. My concern is finding medical grade sources of colostrum. My best result so far is by Jarrow at the Thrive Market but I just ordered some from New Zealand since it is closer to me and requires less customs hassle. I'll report my results on another thread.


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
Joined: Mar 2018
Posts: 106
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Journeyman_AS_Kicker
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still munching Azithromycin - yum yum . Still getting cold symtoms in the morning - Isn't a cold wet nose supposed to be healthy?
Feel slightly run down with again a slightly elevated temperature.
- Thats what antibiotics do anyway - Isn't it?
One more day on - 1 pill then it's the 'big hit' 4 yum yum's - I think that might be a quiet day .
This stuffs certainly doing 'something' Aye but there's the rub as Robin points out the conditions unpredictable . After 7 (7???) months Lets assume its a sunny day in heaven and I feel much better
how on earth am to to know with any certainty its -Azithromycin- 'wot done it '? GMs approach seems to be - for the cost and effort involved just 'do it' - Well I am doing but thats not really how I wanted the thing to 'Pan out' I was hoping I could report quite quickly -- A or B - yes or no . Its not going to unfold like that is it?
' Suck it and see' - and the best of luck sir !

Last edited by Duncan; 04/24/18 05:37 AM.
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PS>
And then this Idea - Mad cap It may be -- but perhaps with a little help? -- This is probably the biggest AS sufferers platform in the world. There are medical people reading - and part of and afflicted too , I'm sure.
Is it possible - feasible even that we on forum could arrange a 'clinical trial' a big one ?
preferably with a 'Medico' holding the strings? There is a speed bump pointed out by L33 - obtaining Azithromycin. ( and I guess if the trials to be 'true and honest' placebo's ) - I think it can be done - by the big box full .
There's a line of a song that comes to mind ' Be careful when bending the law' -still


And you'll excuse I'm sure - but a dark dingy place is exactly 'It to a tee' - keeping all that in mind -- can what I am doing , what GM , what L33 has done along with the report from China be turned to credible scientific reality? , By us an on line community ?. Its a big ask especially as the forum must be infiltrated by 'Big Pharma' who really don't want to see a 'cure' especially by 'abusing one of their own concoctions'
I don't think its ever been attempted , perhaps I go several steps to far -- but - but - but .
Hows the alternatives looking anyway ? - Please give it some quiet thought and believe me, I welcome response from folks ready to fight and scrap with this [*bleep*].
Kindest regards Duncan

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Hi Robbin to answer your question:

After the antibiotics: My pain moved from my lower back to my upper back and ribs with the pain staying at Level 5.

30 days after the antibiotics : My pain went from 5 to 3. I noticed a reduction in pain and I could walk without my walking stick since the pain moved up to my ribs. In retrospect the pain was at level 5 concentrated on my lower back and I could hardly walk without the help of a walking stick.... The Antibiotics made a strange difference as my pain moved and lowered a bit.

Currently I can not comment further on the Antibiotic since Saturday 21/04/2018 I have started No-starch diet since I needed my pain to go down further.

Now 4 days later after starting NSD my pain has gone down to 1.5 from 3(after the antibiotic).

I am only eating steamed chicken + lettuce + cucumber + olives for 7 days, then I'm going to have lamb + salad for 7 days, then beef + salad for 7 days, then Turkey + Salad for 7 days that makes one month of NSD.I am doing Elimination, if one of the meats give me problems I will eliminate it and revert to chicken as my safe food. My goal is to do NSD for 3 Months to see if I can bring my pain down to 0

Already I my pain has gone down and my body is starting to loosen up....

For me the Antibiotic was not a cure 30 days later hence I started NSD....

Best Regards

Lee


Last edited by L33; 04/24/18 08:05 AM.

HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22

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Hi again lee - I also came across this report -which yo might find interesting
If true these figures are astonishing - Photon therapy - case study AS sufferer
I guess try try and try again! - Best wishes Duncan

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Fourth_Degree_AS_Kicker
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My "take away" from this photon therapy study is that I need to play in the sunlight a few times a week.

In fact, I do notice an improvement when I go for a walk at noon time around the part that surround a lake and I play Jimi Hendrix, Kiss the Sky!


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
Joined: Jul 2013
Posts: 178
Likes: 3
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L33 Offline OP
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Hi Guys I am considering buying x 2 ultra violet lamps 5 feet long around 650 nano meter wavelength, and mount on my wall next to my bed and lie next to it for 30min/day apparently photon therapy reduces inflamation markers thanks Duncan.

Yes Robin you are right playing in the SUN will make a difference its the best light source.


HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22

Joined: Sep 2015
Posts: 305
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Fourth_Degree_AS_Kicker
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Hello Duncan:

I am curious as to how your experiment with azithromycin concluded.

L33 was targeting a specific pathogen related to an STD but did not seem to have the same success as the author of the inspiring book at the beginning of this thread, but time will tell.

Taking antibiotics with a target in mind might give results only because one of the target's friends got hit; for sure you realize that.

Such a case is with blastocystis -- sometimes a patient tests positive for B. Hominis, gets treated, then tests negative but the symptoms persist.

The theory is that it is a different culprit causing the symptoms. But another very good theory, that is valid and proven in many other disease due to chronic, low-level stealth infections is Mast Cell Activation Syndrome (MCAS).

Right now I am trying Arindam's diet. I feel that the sugar from the morning fruits is having a negative effect of increasing burning and crunching -- much like gout. But the positive side effect is better nutrition and hence I rid myself of a very bad chronic respiratory infection. The fiber is good for our gut too. I tried introducing Thai glutenous rice into my diet but it made me want to die!! Arindam seems to be eating any starch he wants. I will try again but try just steaming the rice and eating it cold as a rice pudding. My only attempt at eating the rice was making rice pancakes: pre-boiled rice, butter, egg and spices mixed together and then fried in coconut oil. It tasted great but was not worth the increase in inflammation.

And as to your morning sniffles while taking azithromycin, do you think that could have been due to the paradoxical immmune system suppression side-effect of taking antibiotics? Did the morning cold symptoms go away in a few days after finishing the azithromycin?

May the Force be with you!
Robin

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I’m surprised that there is so little discussion about the connection to AS and infections. I was glad to find this post and read the ebook. Thanks to the person who posted it.

The problem with AS and the infection connection is that there is not a single bacteria and therefore not a single antibiotic that can help it. The author was very lucky to even have his particular infection identified and so easily. Also sounds like he caught it early and is maybe rather young when it happened. The sooner it’s treated, the easier a remission or even a cure. But the author might be surprised to have it come back at some point in his life.

Most research I have read most often shows klebsiella as the bacteria responsible. But as the author of the ebook has shown, that is not always the case. And sometimes it is multiple infections and often times they never show up in tests. I was lucky enough to have klebsiella show up in one test over 20 years. But I also believe I have more than one infection.

I think the key thing the author said was “ reactive arthritis”. After many discussions with my rheum doc over the years, he finally flat out said that AS and ReA are the same thing. This is a rheum doc who really doesn’t treat most of his patients with antibiotics but has paid enough attention to understand the connection between the two.

I made the mistake of thinking I was in remission from the infections and stopped my AP protocol. I am now back on it and improving again. Not as rapidly this time, but I am lots older now and my body has taken a beating. I should never have taken the break and should have kept up with booster antibiotics.

Anyway, interesting discussion and thanks again for the link to the ebook.

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