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S-VV's desperation medicine

Discussion in 'General ME/CFS Discussion' started by S-VV, Oct 11, 2018.

  1. S-VV

    S-VV Senior Member

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    Hello everyone!

    I am starting this thread to document my efforts to achieve a long lasting remission. First, a bit about me. I am 21 years old, and study mathematics. I have always had problems with fatigue but two episodes stand out in my life:

    • Keto diet: I started the Keto diet at 18 to deal with hypoglycemic crashes after eating. As many of you know, the first few days of low carb eating, you get what is called the "keto flu". I however, got another unexpected symptom: my lymph nodes enlarged, and they have stayed that way ever since. I was unable to continue the keto diet for more than two months due to a complete lack of energy. Once I upped my carb intake my health improved significantly
    • Treating SIBO: Two years after the keto fiasco I was dealing with some extreme bloating (I looked 9 months preggo). I decided to go the natural antimicrobial route, employing Allicin, olive leaf extract, oregano, neem etc... During the two weeks I felt miserable, consoling myself that once the treatment was over, I would get better. Only I didn't. At this point I was about 50% functional, but over the next few months my energy and aerobic threshold gradually declined further.
    • Lactic acid probiotics: Hoping to "rebuild" my flora, I took some standard probiotics. big mistake. They lower by aerobic threshold so bad I couldn't walk more that 10 minutes without what felt like a sever lactic acid buildup. In hindsight, the last thing I should have done was to introduce D-lactic-acid probiotics to my already acidic microbiome.
    A new symptom appeared that confirmed my long time suspicion of ME/CFS: Inmune activation after exertion. That is, sore throat, painful lymphatic glands etc..

    My hypothesis is simple: I have a profound state of stable dysbiosis. It is known that diet changes radically impact the microbiome, and what could be more radical than dropping all carbs+fibre for the keto trial. Then, of course, the antimicrobials didn't help. Also, I have had IBS since I can remember, and was heavily treated with antibiotics as a child.

    What is my objective? To go from a stable disbyosis to a stable eubyosis. I don't want the fanciest microbiome. To be honest, I don't care if I develop Rheumathoid Arthritis or chrohn's 30 years later. All I want is to salvage what I can out of my life before it all comes crumbling down.

    My protocol consists of two broad phases:

    • Phase 1: Antibiotics. Inspired by Ken Lassesens success stories, plus many anecdotal reports, I will go on a Jadin like protocol, rotating antibiotics and taking very specific probiotics (symbioflor-2 and C. butycurum ). I will use three main classes of antibiotics: tetracyclines, macrolides and azoles. Before starting the antibiotics, I will do one week of Nystatin 10^6 IU two times a day plus fluconazole 100mg once a day to prevent yeast problems. I will continue taking the nystatin during the totality of phase 1 and rotating the fluconazole two weeks on, two weeks off to avoid liver damage.
    • Phase 2: If the antibiotics by themselves are not enough, I will do a DIY homemade FMT taking great care to preserve the anaerobic component, and using the delivery system pioneered by @Master4thDegree .
    Of course, this microbiome restructuring project is embedded in a larger health framework inspired by this graph:


    Treatment Plan.png

    Tomorrow I will be procuring the Nystatin + Fluconazole and on Sunday I will begin the one week Yeast-only part of Phase 1.

    Thank you for reading and any advice is very welcome.

    Tagging @Learner1, @ljimbo423 and @Master4thDegree because I really value your input.
     
  2. Learner1

    Learner1 Forum Support Assistant

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    Since you asked, I am not a fan of antibiotics unless there is no other option. I'm not sure what you are trying to kill, but I'll bet you'll be quite successful in killing not only it, but a lot of other stuff too. Bacteria live in your mouth, sinuses, and a lot of other places in your body, too, doing a variety of jobs.

    My gut was in really good shape until I took a combo of azithromycin, doxycycline, and rifampin for a chronic chlamydia pneumoniae infection. Afterwards, I had 17% diversity, no lacto and bifidobacteria, and 10 months of high potency high quality probiotics and prebiotics has not been able to rebuild it.

    The Nystatin and fluconazole can be useful if you have Candida. My doctors typically prescribe a rotation of them over a couple of months.

    Did you start with a DNA stool test? Do you have any parasites? Food allergies? Celiac?

    You may wish to start by working on the problems you actually have rather than trying a generic protocol for what you think you have but maybe you don't...all I know is I have the utmost respect for what Mother Nature has done and have found just how hard it is to rebuild ones gut.

    Best wishes, and keep us posted!
     
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  3. S-VV

    S-VV Senior Member

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    Thanks for commenting @Learner1 !!!

    My reasons for taking antibiotics are twofold: I want to take antibiotics to disrupt the stable dysbiosis I have. My objective is not to kill everything but rather introduce enough instability to the system so that there is a real chance that my microbiome will topple over to a healthy steady state.

    Of course, I could kill whats left of the good flora, so there is some serious risk involved.

    My second reason is that I have Lyme (Either Borrelia afzelii or Borrelia garinii ), verified by a Lymphocyte Transformation Test and the horrible Morgellons symptoms. However I do not believe that Lyme is a primary cause of my symptoms, rather an opportunistic pathogen.
     
    pibee likes this.
  4. S-VV

    S-VV Senior Member

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    You are very right in how difficult it is to rebuild the microbiome, or even if it is possible at all. My current theory is that many diseases are caused by degenerate microbiome steady states, and so my objective is to escape the ME/CFS equilibrium.

    But you are right. I need to prepare for the possibility that I wipe out my remaining beneficial gut flora. For that, I have access to fecal material of a healthy, slim young woman, but with no genetic ties to me. So if the antibiotic experiment doesn't pan out, I can try a fecal matter transplant.
     
  5. S-VV

    S-VV Senior Member

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    As for focusing on other issues, I think my protocol is already a bit maxxed out. Here is what I take:

    • Nutritional deficiencies: I track my mineral status via HTMA and supplement according to the interpretations of the analysis. I also supplement with fat soluble vitamins A, E, D, K and all the B's in a ratio that I have found beneficial + the methyl forms of B12 and folate. Vitamin C I take about 2 grams a day, more when I have flu symptoms.
    • Mitochondrial support: For ATP production I take Nicotinamide Riboside, reduced CoQ10, PQQ and methylene blue. For antioxidant regeneration I take R-lipolic-acid, glutathione, and c60 oil. For membrane support I take a bit of fish oil and a phospholipid complex
    • Autoimmunity: I take low dose naltrexone, sadly I cannot afford IVIG
    • Viral infections: Rotating protocol of Inosine Pranobex plus the pridgen protocol: Colexib, Valtrex 1500 mgs and Famvir 500 mgs.
    • Blood coagulation/flow: I don't think I have a blood coagulation problem because I bleed very easily, but I believe that reduced blood flow to the brain is an important part of ME/CFS, thats why I take Nimodipine and Piracetam.
    • Toxins: I have a portable infrared sauna which I use once per day. I plan to start using a bile sequestrant à la Shoemaker to help with gastric toxin elimination.
     
  6. S-VV

    S-VV Senior Member

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    Fortunately I don't have any food intolerances or allergies. I am not celiac, but I abstain from gluten as a precaution. I did a very heavy parasite cleanse (mebendazole + Hulda Clark) when my morgellons symptoms appeared, as I had no idea they were related to lyme, and they felt, well, like bugs under my skin.

    I Iive in Europe so I don't have easy access to DNA stool tests. I did do a local stool test. Here are the results. Some of it is cultured, some of it is PCR:

    Captura de pantalla 2018-10-12 a las 16.32.33.png

    I tried the prebiotic remedies to increase Akkermansia and as a result I felt worse. I was not a herx because it lasted a long time and there was no improvement at the end.

    The only thing that is interesting from this report is that the number of total organisms "Numero total de microorganismos", is reduced. This, according to a microbiologist, is indicative of profound dysbyosis and possibly aberrant excess of a few species that are keeping the rest of the species supressed.
     
    Last edited: Oct 12, 2018
  7. S-VV

    S-VV Senior Member

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    Did you feel better afterwards? Or was the negative impact on the microbiome worse than getting rid of c. pneumoniae?
     
  8. Wishful

    Wishful Senior Member

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    The antibiotics regime sounds like it might be dangerous overkill. I accidentally cured my type IV food sensitivity by eating some curry made with slightly spoiled coconut milk. There are probably safer methods of 'flushing' one's digestive tract or otherwise causing a drastic change in the microbiome, but even mild food poisoning seems safer than massive antibiotic assaults.

    My guess is that I had a large population of something that was causing problems, and the flushing reduced their numbers enough for good bacteria to regain control. I'd taken several types of antibiotics (for tooth infections) before that, with no effect on the food sensitivity. Maybe you need to open a can of coconut milk and leave it in the fridge until it looks a bit yellow, and then make some curry... :wide-eyed:

    It's your body. You can decide which method should be the first try, and which the last-chance desperation method. Maybe also follow the idea from another thread about putting the probiotic capsule inside another capsule (and maybe more) to allow the probiotics to survive long enough to reach further along the digestive tract.
     
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  9. S-VV

    S-VV Senior Member

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    Yes, at first it may appear that antibiotics kill everything. However, a review of the literature suggests otherwise. see this table from Ken Lassesens website (https://cfsremission.com/treatment/antibiotics-for-cfs/):

    Captura de pantalla 2018-10-12 a las 20.46.18.png
    The same author also did a small survey on antibiotics and their effects on PWC (https://cfsremission.com/2016/07/23/first-survey-results-on-antibiotics/):

    Captura de pantalla 2018-10-12 a las 20.50.00.png


    From the survey we gather that metronidazole (and maybe other azoles) and macrolides in general have a low chance of having a negative effect. Tetracyclines are a bit of a mixed bag, with both positive and negative responses.
     
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  10. S-VV

    S-VV Senior Member

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    Exactly. We don't want to kill everything. just disrupt things to give the good bacterium a chance to gain territory. Thats why the choice of antibiotic is very important.

    What antibiotics did you take for your tooth infections and for how long?
     
  11. S-VV

    S-VV Senior Member

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    Yes!! If the antibiotic protocol fails, I will do a fecal matter transplant using the triple encapsulation that was explained in the thread about a recovery using FMT.
     
  12. Wishful

    Wishful Senior Member

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    For the tooth infections (failed root canals) I recall penicillin and amoxicillin, and I had one of the cephalosporins. That was quite a few years ago, so I forget the specifics. I took them for the standard prescribed length (one week?). They gave me mild digestive disturbance, but no effect on my ME symptoms.

    I also had ciprofloxacin (bladder infection) last year, two tabs a day for a week. Effective for that infection, but not on the ME symptoms, and I don't recall digestive disturbances. I did drink lots of cranberry juice with that, but didn't find any actual scientific support for that.

    The list of what the antibiotics treat and don't treat is interesting. Given how poorly understood the microbiome still is, we may have bacteria whose resistance is unknown, so it's hard to know which antibiotic to try.

    I just thought of another way to kill off bacteria. I suggest you put high-dosage radiation at the bottom of your list of methods to try. :eek:


    I do wish you good luck with your experiments.
     
  13. S-VV

    S-VV Senior Member

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    Thanks!

    Hahaha, I'll keep the radiation in mind ;)
     
  14. ljimbo423

    ljimbo423 Senior Member

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    Are you sure your GI tract is acidic? I ask because I've seen a few PH tests here that people have posted and they were all alkaline, as was mine. Mine was 7.9 and the range was 6 - 7.2

    I'm actually thinking about trying a short course of antibiotics myself, to speed up the improvements I'm getting from antibiotic herbs.

    I'm thinking about taking one antibiotic for maybe 5 days. Then wait for 3-4 weeks and see if I feel better. If I do, I might repeat that same 5 day course.

    If I don't feel better, that will be it. I'm very weary about messing with the microbiome but I completely understand your sense of urgency.

    I think a low carb diet, as Ken Lassesen talks about, is crucial to getting rid of dysbiosis and keeping the dysbiosis from returning. Like you though, I don't do well with keto at all. Low carb I'm fine with.

    I also think prebiotics are incredible important. I didn't start taking them until I had been treating SIBO/dysbiosis for about 6 months. To make sure I wasn't feeding mostly pathogenic bacteria.

    As I understand it, prebiotics are the best and fastest way to increase your healthy microbiome numbers. I think that works best though, once the pathogenic bacterial overgrowth is significantly reduced.

    Probiotics, as you might already know. Don't colonize the gut, they are transient and are gone in a week or 2.

    Whatever you do, I wish you all the best in it!!
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    You might want to save the radiation as a last resort.:lol::thumbsup:
     
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  16. S-VV

    S-VV Senior Member

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    Thanks for commenting @ljimbo423 !

    With respect to the acidic microbiome/intestine, I started taking lactic acid bacteria after receiving my report and seeing that my stool had a pH of 8 (very basic), but after one week of a mixture of bifidobacterium and lactobacillus I had very strong symptoms of lactic acidosis. In fact, they were so bad I was unable to hold my phone in my hand for more than 30 seconds because my biceps would give out!

    It is true that most probiotics don't colonize, but I had the (mis)fortune of taking human sourced strains that showed colonization and persistence. Specifically, a l.fermentum strain available in Spain that seems to be very adept at colonizing
     
  17. S-VV

    S-VV Senior Member

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    Yeah, prebitotics are very important. I was actually just thinking about them. If our objective is to destibilize the microbiome to give the good bacteria a chance, it makes sense to give them favorable conditions.
     
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  18. S-VV

    S-VV Senior Member

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    Im sure you already know, but stay way from penicillin/b-lactams! They didn't fare very well in Ken's survey

    Also maybe one course isn't enough. Maybe each short course serves to further destabilize our dysbiosis. I will try at least a few courses unless I get serious side effects
     
    Last edited: Oct 12, 2018
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  19. S-VV

    S-VV Senior Member

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    Very interesting about your improvement with the low carb diet. I actually do better on a high carb diet. Even though it may feed the bad bacteria, my body just cannot adapt to lower carb intakes, and I have tried many times.

    One interesting thing I have noticed is that some days I get mini-remissions, with a noticeable improvement in symptoms. While I'm normaly constipated, when these mini-remissions occur, I have diarrhea for the day. This small anecdote has convinced me that the gut plays a pivotal role, and that there is some hope for my microbiome. Have you noticed something similar?
     
  20. ljimbo423

    ljimbo423 Senior Member

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    You might be right that you were experiencing lactic acidosis from the probiotics. My view is that both probiotics and antibacterial herbs kill off gram negative bacteria in the gut.

    The lipopolysaccharides(LPS) from the bacteria that are killed off, get into the bloodstream.

    Once in the bloodstream, the LPS cause an up-regulation of pyruvate kinases. Which impairs PDH and causes the switch to anaerobic glycolysis that Fluge and Mella found in there study.

    This switch to anaerobic glycolysis causes an increase in lactic acid to be created from pyruvate because it can't be converted to Acetyl CoA and used in the krebs cycle.

    So when I use a muscle say for brushing my teeth or almost any muscle, lactic acid builds up very quickly from anaerobic glycolysis. Especially when LPS levels are high. Causing the tell tale burn, ache etc. from it. I experience this quite often from killing off bacteria in my gut with antibacterial herbs.

    I think Fluge and Mella talk about how lactic acid levels in ME/CFS are normal until there is a bigger demand for energy in the muscle. Then it rises fast. Which would make sense if the lactic acid was being produced in the mito. when there is a bigger demand for energy.
     
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