• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Alexandru Matei

    Severe brain symptoms and still declining

    coQ10 does nothing, the brain symptoms in most people here I believe are from the tensed muscles in their neck and jaw. Some might have TMJ as well like me. The only thing that helps me with these are walking in fresh air, swimming, riding my bike and benzodiazepines.
  2. Alexandru Matei

    Burning spine?

    It didn't completely go away, I'm not sure if I posted this before but I do have several herniated disks in my cervical an thoracic spine but the burning it's not from there. They gave me a fibromyalgia diagnosis. When the burning started in 2014 October (when I fell severely ill) that was the...
  3. Alexandru Matei

    Severe brain symptoms and still declining

    It's that time of the year when I am flaring badly .. and just stumbled across this thread. My brain, spine and body is on fire and in pain. I might have systemic lupus since my last tests showed huge inflammation in my body with a positive ANA test. It's a hell what I am going through.
  4. Alexandru Matei

    Weak, trembly feeling, with twitches and shakes

    These symptoms scream Celiac. A lot of people are suffering from Celiac disease and they tend to believe they have chronic lyme or other viral infections. All of my symptoms scream Celiac too, I just cannot get tested since I gave up gluten for 2 days and will not ever ingest gluten again. I...
  5. Alexandru Matei

    USA & Norway Governments Show Post-Sepsis EBV and Rituximab

    CFS/ME is in fact post-sepsis syndrome that is the link between the study and EBV reactivation, nobody on the thread has read the articles. I am not here to debate I am here to post the latest news on successful ME/CFS stories using Rituximab.
  6. Alexandru Matei

    USA & Norway Governments Show Post-Sepsis EBV and Rituximab

    You haven't read the article in seems, at the very bottom there is a link to the full article. You can use Google as well to find more information about this trial ;) That's the main problem - people are in fact suffering from post-sepsis syndrome. The immune system is shut. I am in a hurry...
  7. Alexandru Matei

    USA & Norway Governments Show Post-Sepsis EBV and Rituximab

    We are certain you’ve all seen by now the final public admissions by the Governments of Norway and the United States that ME/CFS and Chronic Lyme are really the same thing as post-sepsis syndrome, with the terrible post-sepsis immunosuppression and chronic active herpes viruses, fungal-induced...
  8. Alexandru Matei

    Severe brain symptoms and still declining

    Having a positive Lyme test does not necessarily mean you are symptomatic or ill. (most lyme tests will come up negative) The way I see things - Even people that have been diagnosed with Lyme have some sort of immune dysfunction that allows the bacteria to spread even after years of treatment...
  9. Alexandru Matei

    Burning spine?

    I am still questioning my health issues so yes I do have to rule out lupus and other issues. I am also questioning if this is due to Lyme or another viral component, metal toxicity that I did not a diagnosis for. (or any combination of these conditions) It's hard to get to the root cause. Have...
  10. Alexandru Matei

    Severe brain symptoms and still declining

    I certainly believe that psychosis is possible with ME, I believe it would be more possible with Lyme though and other co-infections, I admit that I have been close to psychosis 2 times on two different flares.
  11. Alexandru Matei

    Burning spine?

    I tend to get the burning spine and head sensation and it intensifies even in the mornings when I just got out of bed, the posture might play a role too, what I have noticed in particular that 1) I only get it sitting down 2) I get it when I am really mentally fogged by noise (when two people...
  12. Alexandru Matei

    Severe brain symptoms and still declining

    hi, I was just giving my two cents - Dementia is far more severe than fog or severe dissociation states, it goes beyond. Hope you don't mind me asking - you're saying that you're on a ventilator? Is that because of ME? Al
  13. Alexandru Matei

    Burning spine?

    Sparrow, Thanks for your post, I am aware that the burning in my case might have several causes - I do have cervical issues (cervical spondylosis) and scoliosis. But the weird part is that this type of burning only comes with my flares, and it does subside while laying in bed, opiates also numb...
  14. Alexandru Matei

    Severe brain symptoms and still declining

    I doubt anyone with ME would get anywhere close to having dementia like states. I personally have seen two people with Dementia - old seniors - they did not know who they where, they were speaking about selling properties that they sold decades back, they did not recognize their family, they...
  15. Alexandru Matei

    Burning spine?

    Does anyone get an intense burning in their spine especially when sitting? I hurt all over, and this burning spine pain is taking my breath away, I get an impending sense of doom when I get it especially when sitting down. I am going to get an MRI of my cervical and thoracic spine to rule...
  16. Alexandru Matei

    Lunulas

    IMPORTANT: An absent lunula is perfectly natural on the little finger! Many people have 8 lunula, though some of them might be hidden under the cutticles - because the lunula are typically diminishing in size from the thumb to the little finger. Fewer than 8 lunula can signal various...
  17. Alexandru Matei

    Why this sudden feeling of severe agitation?

    I get agitated from confusion, pain, brain fog, anxiety and OI etc - there is a combination of factors some surely I have missed to list. I find myself feeling agitated especially sitting upright trying to talk with my family, it's hard to comprehend what they are saying and it just gets worse.
  18. Alexandru Matei

    pressure in head

    Neutropenia is out of question based on my lab work, I don't know much about immune deficiency in the immunoglobulin subclasses or other immune deficiencies, I do have chronic oral candida as well, that rarely goes away.
  19. Alexandru Matei

    pressure in head

    I believe many here might have sinus infections causing some of the pressure (I also have chronic sinusitis for ten years now) however sinus infections generally speaking should not affect the cognition, any doctor will tell you that. My opinion that many might have Lyme Disease or other...
  20. Alexandru Matei

    Burning on Head and Spine is driving me crazy

    I know this is an old thread but did anyone figure out what is causing this excruciating burning in the head and spine? In my case it comes with the flares, I am going to get tested for lupus. My MRI and MRA of the head came back clear except for chronic sinusitis. This flare started in October...
  21. Alexandru Matei

    Gallbladder: did you have issues with it during your CFS journey?

    I didn't have it inflammed. They found it with malformations that are common in many people. These malformations are since birth and seemingly something else triggered the attacks. I suppose that the Fluconazole along with other antifungals that I used in the past two months. Im now off all...
  22. Alexandru Matei

    Bulging Superficial Leg Veins

    The problem is that I live in Romania where medicine in general is a wack, they do just basic testing, I will ask my doctor to check my liver, kidney functions as well, apart from the colonoscopy that I have to get done. Something is definitely wrong and making me this sick. A lot of the tests...
  23. Alexandru Matei

    Bulging Superficial Leg Veins

    It's so hard to determine things without getting proper testing, my veins bulged for 3 weeks then stopped then started bulging again. My health went downhill since I started a fluconazole protocol for my candida overgrowth, stopped the fluconazole and started natural anti-microbials now I...
  24. Alexandru Matei

    Bulging Superficial Leg Veins

    Sorry to hear you ha DVT, how this this manifest in your case? DVT is not just bulging veins, it comes with swelling, redness and other symptoms. I stopped taking too much charcoal because I don't get bloated as much as I did in the past two months. Also started magnesium and vitamins to see...
  25. Alexandru Matei

    Bulging Superficial Leg Veins

    It doesn't look like DVT or phlebitis at all, no redness and no swelling - it just doesn't match. In the last few days it started to subside. My GP had me undressed looked at my veins and said that this is by no means DVT, phlebitis.. I suspect POTS, because POTS can cause this blood pooling...
  26. Alexandru Matei

    Gallbladder: did you have issues with it during your CFS journey?

    I just started getting galbladder attacks and they first told me I needed to have it removed, after 4 ER visits with galbladder attacks they ended up telling me that they won't remove it since I don't have stones. (still my gallbladder in non-functional) every radiologist and doctor told me...
  27. Alexandru Matei

    Bulging Superficial Leg Veins

    Thanks Gary, I will see my GP and see what I can do about this. Can certain medication induce bulging veins?
  28. Alexandru Matei

    Bulging Superficial Leg Veins

    It might be that too since I have smoked 15 years (and my body does not detoxify properly, I rarely sweat and I sweat on antifungal and antimicrobials mostly. But I believe bullging veins in my case has a lot to do with blood pooling from POTS or the systemic infections. Thanks for your...
  29. Alexandru Matei

    Bulging Superficial Leg Veins

    I'll ask my GP to test me for blood clotting disorders because this is not the first time I have bulging veins like this, I had them on everyone of my flares, but still no DVT signs or pulmonary embolism (they actually did 2 CT scans of my lungs in the ER recently and they both looked great as...
  30. Alexandru Matei

    Bulging Superficial Leg Veins

    hi - I don't think this could be DVT since it doesn't look like it - these are the symptoms in DVT pain, swelling and tenderness in one of your legs (usually your calf) a heavy ache in the affected area. warm skin in the area of the clot. redness of your skin, particularly at the back of your...