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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. LHCTom

    Curious if my story rings any bells with others?

    My history adds additional evidence in support of some kind of underlying normally immune controlled infection being activated. Shortly after my problems began, my blood tests showed elevated muscle enzymes (CK), high creatinine, low testosterone, sporadically high EOS, very positive IgG for...
  2. LHCTom

    Curious if my story rings any bells with others?

    Its not as simple as "The fact that hyperbaric oxygen therapy (HBOT) does not help ME/CFS very much seems to indicate that oxygen shortage is not the issue in ME/CFS." HBOT therapy only provides excessive O2 to your lungs but there are a variety of downstream factors that could interfere with...
  3. LHCTom

    Curious if my story rings any bells with others?

    Anion Gap Calculator without K at http://www.globalrph.com/anion_gap.cgi Anion Gap Calculator with K at http://www.ebmconsult.com/app/medical-calculators/anion-gap-calculator 2015 - AG = 18 2016 - AG = 19 Increased Anion Gap: Generally considered to be >12 ± 2 mEq/L or mmol/L and reflect the...
  4. LHCTom

    Curious if my story rings any bells with others?

    Duncan, How are you doing? Better - Worse? How high is your C6? Mine was 2.2 ( <.91 = negative) when first checked at Columbia at Stony Brook Labs who used the Immunetics kit. I had follow up tests at Quest and iGenex who both use the Immunetics kit also. It began to fall after my first 2.2 in...
  5. LHCTom

    Curious if my story rings any bells with others?

    Telling you that its caused by hyperventillation is beyond absurd, its stupid! Where has creativity gone - under a rock! Is that you Duncan from the LymeNet Forum? Send me the values on some metabolic panels you have had over the year and years. I need the Sodium, Potasium, Chloride and Total...
  6. LHCTom

    Curious if my story rings any bells with others?

    Understood... Ideas welcome!
  7. LHCTom

    Curious if my story rings any bells with others?

    As you know, @@LHCTom , we share several common elements in the arc of our diseases. It would seem still another is an abnormal CO2 value - only mine consistently comes in as low. Not quite sure what role CO2 plays - as a marker or otherwise - but it's of at least potential interest, or perhaps...
  8. LHCTom

    Curious if my story rings any bells with others?

    I was diagnosed with Chronic Fatigue by multiple doctors including one at Stanford, OMI, multiple integrative clinics, Kaiser among others. But even though my symptoms match the criteria, other symptoms do not. I was one of the patients in Dr. Naviaux’s recent metabolomics CFS study and helped...
  9. LHCTom

    Has Anyone Seen Dr. Kogelnik?

    I've been around and chased down a wide range of possible underlying problems/causes/aggravating factors for my diagnosed CFS and would not recommend AK as someone to analyze your condition and follow up. I had one blood test and received minimal reporting and no follow up. Got the distinct...
  10. LHCTom

    Cort Johnson: An Eye on "The Mitochondria Man" : Robert Naviaux & Chronic Fatigue Syndrome (ME/CFS)

    The study analyzed over 600 endogenous metabolites in each ME/CFS patient using HILIC-ESI-MS/MS on a ABSCIEX 5500 QTRAP tandem mass spectrometer. It measured the ME/CFS cohort metabolite levels in selected pathways and compared them against age matched controls. The metabolites comparisons were...
  11. LHCTom

    A Patient driven study

    I've been disgnosed with CFS/ME by 2 top West Coast doctors. I've investigated many aspects of my illness and have an interrest in finding a group of well defined CFS/ME patients who would like to get together and perform a microbiome study using ubiome.com. They are only able to detect bacteria...
  12. LHCTom

    Expanded Study Confirms that Lyme Disease May Be Sexually Transmitted

    First, I am a Lyme sufferer an by no means do I not think the question of sexual transmisison is not an important question and yes it does deserve real research. Nothing is black and white. Its certainly possible that Lyme could be transmitted sexually given the right conditions. So the question...
  13. LHCTom

    Expanded Study Confirms that Lyme Disease May Be Sexually Transmitted

    That study was effectively an attempt to scare everyone and the CDC into more action. Even if spirochetes were found in semen and vaginal fluids, Borrelia spirochetes are not adapted to the second half of the journey and evading the innate immune system as they try and enter the sex organ...
  14. LHCTom

    Anyone use Advanced Laboratory Services to test for Borellia?

    Here are my views on the CDC Assessment of the Culture. http://puurelyrandom.wordpress.com/ Whether it works or not, a properly designed culture is the most straightforward path to detremining if Lyme persists. For the CDC scientists to imply the culture is bad because of contamination is bad...
  15. LHCTom

    mycotoxin test from realtime labs

    I am also seeing Dr N. at Gordon Medical and the office only charged $525 for the Real Time test? Did your test show any mycotoxins and if so, what was the treatment? My test showed .66ppb of Trichothecene Group and negative for Ochratoxin and Aflatoxin. I purchased the Pro-lab kit and taped...
  16. LHCTom

    mycotoxin test from realtime labs

    Here is a summary of some of the home mold testing products available. http://mold-test-kits-review.toptenreviews.com/
  17. LHCTom

    mycotoxin test from realtime labs

    The $500 is for the Real Time test. And yes the next step is determining if its your home. The Pro-Lab culture from Amazon is $7.99. If it grows mold, you can send it to them and they will identify the type of mold for $40. Most homes have some kind of mold spores so it will probably grow and...
  18. LHCTom

    mycotoxin test from realtime labs

    The petri dishes only show if there are mold spores in your home. They don't tell you if you were exposed somewhere else or at a different time. The Real Time Labs test actually tests your urine looking for the Mycotoxins in your body using an ELISA. So its not the same. Its best to do both if...
  19. LHCTom

    Black Mold Poisoning

    The test is done by Real Time Labs by using a standard ELISA. http://www.realtimelab.com/healthcare-mold-and-mycotoxin-information I suggest calling them to ask about reliability. ELISA's are among the most common types of tests done and are based on antibodies. They are normally reliable for...
  20. LHCTom

    Slide Presentation on Mold Toxicity and CIRS

    My test from Real Time showed .66ppb for Trichotthecene which is a mycotoxin from Stachybotrys chartarum aka "black mold". I ordered a Pro-Lab test kit and sent it in for analysis. It contains a a petri dish which I taped to my forced air duct for 15 minutes and then let it grow for 3 days. It...
  21. LHCTom

    Anyone recovered after discovering residential toxic mold exposure?

    My test from Real Time showed .66ppb for Trichotthecene which is a mycotoxin from Stachybotrys chartarum aka "black mold". I ordered a Pro-Lab test kit and sent it in for analysis. It contains a a petri dish which I taped to my forced air duct for 15 minutes and then let it grow for 3 days. It...
  22. LHCTom

    Black Mold Poisoning

    My test from Real Time showed .66ppb for Trichotthecene which is a mycotoxin from Stachybotrys chartarum aka "black mold". I ordered a Pro-Lab test kit and sent it in for analysis. It contains a a petri dish which I taped to my forced air duct for 15 minutes and then let it grow for 3 days. It...
  23. LHCTom

    VO2 Max and AT test

    My test from Real Time showed .66ppb for Trichotthecene which is a mycotoxin from Stachybotrys chartarum aka "black mold". I ordered a Pro-Lab test kit and sent it in for analysis. It contains a a petri dish which I taped to my forced air duct for 15 minutes and then let it grow for 3 days. It...
  24. LHCTom

    mycotoxin test from realtime labs

    My test from Real Time showed .66ppb for Trichotthecene which is a mycotoxin from Stachybotrys chartarum aka "black mold". I ordered a Pro-Lab test kit and sent it in for analysis. It contains a a petri dish which I taped to my forced air duct for 15 minutes and then let it grow for 3 days. It...
  25. LHCTom

    Infectolab test results (borrelia etc) -what is OspC bg?

    OspC Bg is the Outer surface protein C or OspC for Borrelia garinii. The "g", "b", and "a" are the genospecies. The European Euroline includes the OspC antigens for all 3 genospecies found in Europe. So the results should also have OspC Bb for burgdorferi and OspC Ba for azfellii. Sorry for...
  26. LHCTom

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    One of the problems with Lyme is the spirochetes are able to find hiding places from both the immune system and antibiotics. This is common with other pathogens. If the Lyme spirochete is stopped with antibiotics before it widely disseminates, its not difficult to kill. Think about the Herpes 1...
  27. LHCTom

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    I suggest the new ALS Lyme culture with the PCR and Eurofins sequencing option. It appears to be the best test to determine an active infection and does not suffer from the multitude of indirect tests: see: Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum...
  28. LHCTom

    Best forum for Lyme?

    What do you mean by cDNA? PCR tests that utilize DNA are 30% sensitive at best. The ALS culture seems to be the best if the PCR option is used to verify and identify the Borrelia. Even with DNA, its still possible depending on the primers used, to miss some species. A positive culture that is...
  29. LHCTom

    Best forum for Lyme?

    The Lyme situation is sad. I am now convinced Lyme is my primary problem. The testing is a disaster and treatment is even worse. Its very hard to get competent help. Most mainstream doctors don't know how to properly test for Lyme if you can convince them to do it. Then they do the CDC 2 tier...