Not CFS, Rhodotorula mucilaginosa infection

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

  1. Pgrovetom

    Pgrovetom New 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
  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 Active 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.