Not CFS, Rhodotorula mucilaginosa infection

Discussion in 'General Discussion' started by Pgrovetom, Jan 23, 2018.

  1. Pgrovetom

    Pgrovetom Member

    I was diagnosed with CFS/ME at the Stanford CFS Clinic and confirmed by a metabolomics study I helped fund but believe I have found my actual problem after years of struggles and searching. I've always been concerned at the ease by which I was diagnosed with CFS/ME without what seemed a serious and thorough differential diagnosis. I've been to dozens of doctors at UCSF, Stanford, Mayo Clinic and many others. Once I received a variety of diagnosis and my "list" became long, I got the impression I was not being taken serious. So I have done my own diagnosis using doctors as needed.

    I've had some blood tests that were not consistent with CFS/ME but I always believed were suspicious. They included wildly varying total IgE between 300-1200, IL-4 as high as 25X normal and wild pulses of EOS >20% but without any sufficient allergy testing to explain properly. In addition to CFS/ME, I was diagnosed with a dozen things plus IBS and had chronic sinus problems including an cyst that showed on scans over years. One TH1/TH2 cytokine test post prednisone showed IL-4=96 = 24x normal, Il-5=12 =3x normal, IL-10=66 = 3.5x normal, INF-g=51 = 2x normal, and TNF-a = 34 = 1.5x normal.

    I was tested for everything for both allergies and and infection ( and more) without any results that explain my problems. Lots of indications and feelings suggested a growing infection. ID doctors are not the most flexible gang. The problems also included asthma, body wide muscle and joint pain that moved slowly throughout body, constant severe fatigue, and anxiety with a dizzy-like feelings and more. The anxiety and dizzy feeling seemed sensitive to the foods I ate especially sugars and some carbs. I took high dose prednisone and it went crazy with cardiac affects including a permanent right branch bundle block plus tachycardia and arythmias. I stopped the prednisone and only the right branch bundle block was permanent.

    Tests suggested a possible fungal infection and or allergy but none was found to explain. I recently went to the Mayo Clinic where a stool test found a Rhodotorula mucilaginosa positive culture. I had had partial remission due to Fluconazole but the symptoms always returned quickly. Many things made me suspicious of a yeast or fungal infection that was difficult to find and treat. I had regular yeast-like sores especially post antibiotics. It wasn't Candida as expected. ???

    I researched Rhodotorula mucilaginosa and found it was not possible to achieve a MIC with oral azoles to clear an infection. Only Amphercetin B. is truly effective against Rhod. mucil. but its only available in IV formulations with serious potential side affects. No doctor would ever give me it based on a stool culture only. I discovered it is available in a oral low bioavailability compounded version. A local doctor ordered it for me at 250mg 3 times a day. After one day, my sinuses hurt so much I could barely take it. It was throughout my face in 100% of my sinuses. Then the pain resolved and my sinuses drained in an extraordinary way. When I increased the dosage this recurred to a lesser degree a resolved more quickly. It was throughout my sinuses. The reservor???.

    I had been having severe GI symptoms upon eating which also began to improve. In my gut was known. My fatigue lifted for some half day periods. This is something I had not experienced. I had been having renewed cardiac problems which also seem to improve. Apparently the oral Amphercetin B. has enough bioavailability to have some systemic results. The body muscle and joint pain first became severe followed by bouts of resolution. Its not clear if the infection was in body or just my GI+Sinuses. The cytokines could have been causing the body pain or the Rhod. mucil. may have entered my body but not yet my blood. Its hard to say so far. I've reached out some ID doctors to get more help. Good luck!

    It turns out ILC2 cells produce IL-4 in response to fungal infections ( like helminths) which in turn would explain my IL-4 and IgE which is pruduced in response to IL-4. A non allergy allergy??? This in turn can affect both Mast and Eosinophils which can explain EOS and cytokine storms and that were sporadic and worse after prednisone which disabled my immune system temporarily.

    I'm curious what others think of all this and has anyone pursued oral Amphorcetin B. for Mold/Fungus/Yeast for CFS on the premise Azoles don't work. Many suspect Mold but mine remained hidden from doctors for 10+ years until a lucky catch. You would have needed to know this plus convince a doctor to order an oral compounded conventional low bioavailablity Amp. B. or you would have never known for years like me. It would appear it all started in my sinuses and that inoculated my gut and possibly my body. I had had many fungal indicators including high mycotoxins and sores. But I was baffled by the failure of Azoles until I found out the actual fungus and that it was Azole resistant. Could others have a similar problem?

    Hope you find this interesting and I'm curious of thoughts given anyone could have a fungal infection only responsive to a anti-fungal not easily available that could cause it to be missed even if a fungal treatment was tried. Again, many are supicious of Molds/fungus/yeast and resulting immune system impacts such as cytokines, Mast cell activation and degranulation and Eosinophil degranulation.
     
    Last edited: Jan 23, 2018
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  2. Not dead yet!

    Not dead yet! Well-Known Member

    You might be interested to know:

    Article: Natural preserved products are becoming increasingly desired by consumers. Because of this, scientists are studying antifungal lactic acid bacteria and their preservative properties. Since lactic acid bacteria typically can survive at wide range of temperatures and pH levels where some food spoilage yeasts are found, lactic acid bacteria are being studied to determine if they can inhibit growth of undesirable yeast. L. plantarum, a lactic acid bacterium, produces antifungal activity that can be substituted for potentially harmful preservatives that are found in food products [8]. A study in 2012 examined L. plantarum to determine if it had the ability to inhibit the growth of Rhodotorula mucilaginosa (R. mucilaginosa), a yeast that spoils dairy products and orange juice. After isolating and determining the viability of two strands of L. plantarum (strand 16 and 62), this group determined its affect on the activity of R. mucilaginosa by using the antiyeast bacteria as dairy starter adjuncts in yogurt and inoculants in orange juice. Inhibition of R. mucilaginosa by L. plantarum was tested against commercial, FDA approved preservatives such as sodium benzoate and potassium sorbate. The study demonstrated that L. plantarum, in fact, had a more significant impact on the inhibition of the growth of R. mucilaginosa compared to the FDA preservatives. It also decreased the rate of spoilage in both orange juice and yogurt (Figure 5) [8]. Since the inhibition of R. mucilaginosa was more effective than sodium benzoate and potassium sorbate, this bacterium has the potential to increase shelf life of yogurt and orange juice. However, it is important to note that the antifungal compounds produced by L. plantarum are unknown and currently being investigated.


    Obviously you've been treated, but this may be like h pylorii, you might become easily reinfected by tainted OJ or milk. You might like to know that Potassium Sorbate can be bought from Amazon in many countries. It is used to stop the fermentation of wine. When I was making a lot of homemade juice, I would add a bit to each batch so I could keep it for a day without much loss. Juicing 3x a day with sound sensitivity is not fun. :)

    I'm glad you found out what worked for you. I wish it was that easy for me. I think one way we can benefit medicine in general is to stop this "dozens of doctors" madness. People shouldn't have to go to Mayo Clinic for a diagnosis of a pathogen. If the insurance companies think they're saving money by limiting access to tests or diagnostic procedures, they are wrong. Congratulations to you.
     
  3. TJ_in_UT

    TJ_in_UT Well-Known Member

    I've been working with an ENT lately. CT scans show some gunk in my sinuses that shouldn't be there, and it didn't budge after a round of Augmentin. My scans don't look like a typical fungal sinusitis, but I have to wonder if that's part of it, considering my sensitivity to mold. Apparently, fatigue is a major symptom of sinusitis, and is often resolved with sinus surgery.
     
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  4. Mindi

    Mindi New Member

    Hello,

    I wanted to thank you for this post and see where you are at in your journey. I’ve had health issues for years and knew that my micribiome was out of balance but couldn’t find relief. I cried when I read the symptoms you describe because they fit exactly how I feel. After lots of the dr to do more testing, I received this diagnosis August if 2018. I know that I’ve had it a long time and was relieved to finally have a label because I was considered “crazy” then. My ND put me on an herbal supplement and the die off was too much and I got really sick. Ive been attempting other less invasive treatments but am honestly scared with how bad I feel. I’m not sure if I’m effectively treating it or if my body can even handle the detox. I’ve honestly been feeling so terrible that I have to get in bed around 3pm each day from fatigue and nausea. It’s been really debilitating especially with a 4 and 6 year old. I hope that you have found relief and would be so appreciative if you are able to share.
    Mindi

     
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  5. Pgrovetom

    Pgrovetom Member

    I was able to rid myself of the fungus Rhodotorula mucilaginosa but many of my symptoms continued. So I've moved on an have tried to systematically try and treat and or isolate the causes of my symptoms. First I did a home done FMT followed by 3x daily prebiotic free Saccharomyces boulardii and bifidobacterium blend and this seems to have calmed down my gut symptoms as long as I avoid sugars. Through testing and uBiome sequencing, I discovered I had some rather unpleasant bacteria in my gut. It included a number of nasty Enterobacteriaceae including Klebsiella Pn. I did SIBO testing but it came up negative.

    Another prominent symptom included something that was apparently happening while I was sleeping making me ill, headaches, fatigue, sometimes confused and a variety of neurological symptoms. They all emanated from something while I slept. I did an overnight SPO2 test at the Mayo Clinic plus I purchased my own overnight recording SPO2 and heart rate monitor to see if I had sleep apnea. The Mayo Clinic study was normal but I discovered I had mild apnea when I slept flat on my bed. By raising my head, I was able to get zero to minimal O2 desat events ruling out apnea as a cause. Even while wearing my SPO2 monitor, I was awakening feeling very ill. The SPO2 monitor showed nothing unusual and I even did a few videos of me sleeping and I could neither see, hear nor catch anything unusual on my monitor. Something seems to be happening in my brain while asleep but its not obvious what it is as my body doesn't seem to show it.

    So I wondered if this was a neurological problem or something in my body was poisoning or inflaming my brain. So I checked cytokines and complement system on a bad ill morning and my immune system did not appear very active. I checked for ammonia to see if my liver was having a problem poisoning my brain with ammonia. My ammonia was also normal on a bad morning. So it did not appear my liver was causing the problem or my gut was releasing something like gram negative LPS triggering my immune system aggravating my brain.

    So the mystery continues. My next suspicion is; am I having small seizures while in deep sleep or something like vasospasms which restrict O2 to my brain but doesn't effect my finger SPO2 O2? I have partially tested these by taking phenylephrine and coffee before bed. The coffee helped but not the phenylephrine. I also tried Dipyridamole to increase my adenosine while sleeping without any effect. I then tried .5mg Clonazapam and it almost completely stopped my morning ill feeling. That seems to support the micro-seize hypothesis. So now I'm going to buy my own EEG monitor and try looking for seizures or unusual EEG activity. I've also made an appointment with a neurologist but I'm not hopeful as I've told some of this story to many doctors and they seem to role their eyes or ignore me. This includes at the Mayo Clinic, Stanford, UCSF and John Hopkins plus local doctors.

    I'm curious if anyone has explored anything like micro-seizures or vasospasms while sleeping as a possible cause of CFS/ME?
     
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  6. TJ_in_UT

    TJ_in_UT Well-Known Member

    I had sinus surgery in late September last year. My wife and I were very hopeful that it would be the cure I needed, but I haven't improved. The lab work on the material removed from my sinus/nasal passages found no fungal or bacterial infections, only high levels of eosinophils, suggesting an unknown allergen. My allergy skin prick test panel was negative for everything tested, but there's apparently something going on. I'm now on daily antihistamines and montelukast, which seems to help a bit with inflammation. Unfortunately, I've developed a nasal perforation as a result of the surgery, so my nose whistles, and that sometimes disturbs my sleep. :shifty:
     
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  7. Not dead yet!

    Not dead yet! Well-Known Member

    I also have Klebsiella, that much I know because many tests have shown that some of my infections are from that one. I think it can be resident in a person, or just escaping from the gut to cause trouble. A lot of it stopped when I went gluten free, and I can't be sure if that's because I have Celaic, or if that happens to everyone. Reports on that vary.

    On apnea, I have to use a CPAP, even though I'm only borderline on any sleep study test. I think those machines need to be made available to everyone. They can stop the pressure at 9 for consumer models if they want, for safety, but this begging for treatment has to stop.

    Thank you for sharing your experience.