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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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  1. Antares in NYC

    Spinal tab / lumbar puncture scheduled - what panels should I request?

    The nurse practitioner I talked to on the phone told me they are looking at titres for Lyme only.
  2. Antares in NYC

    Spinal tab / lumbar puncture scheduled - what panels should I request?

    Hi everyone, My new neurologist is scheduling me for a lumbar puncture to analyze my cerebro-spinal fluid next week. She asked me to reach out to my other doctors (ME/infectious disease specialist, LLMD) so they can add their requests for panels and tests to run. We are trying to piggyback as...
  3. Antares in NYC

    What is your normal temperature?

    Between 96.8 and 97.5F on a regular day. Anything above that and I feel feverish, which confuses my doctors when I tell them I'm running a fever with chills and sweats but the thermometer barely raises above 99F.
  4. Antares in NYC

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    Hi Duncan, do you think I can reach out to him directly? Is he responsive that way, or do I need to set up an appointment and travel to Baltimore to talk to him? Thanks.
  5. Antares in NYC

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    Hi @Valentijn, I'm starting to believe that at this point I'm dealing with one of two things: moderate ME/CFS, or the resulting damage of having untreated Lyme for so many years, often leading to auto-immune conditions and systemic problems. I really wish there was a clear and reliable test to...
  6. Antares in NYC

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    Thanks for the words of support. It means a lot. I'm really sinking here but not willing to give up the fight. Can anyone recommend me any LLMD specialist in NYC, or by extension southern CT and northern NJ, willing to try other abx protocols and keep pursuing a solution to this nightmare...
  7. Antares in NYC

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    Hi there. I haven't posted in these forums much lately. I've had a horrible year so far, and just got even more bad news today. I don't even know where to start, so I guess I will start from the beginning: I joined Phoenix Rising three years ago this summer. Both my girlfriend and I had been...
  8. Antares in NYC

    Non Restorative Sleep

    Hello Cubbies2016, Unfortunately I have to report that non-restorative sleep has been one of my main symptoms since day one. It's also one of the worse symptoms I experience, in addition to neuro-cognitive, memory, and fatigue issues. All that you explained matches my sleep patterns: more...
  9. Antares in NYC

    Doctor that prescribes vancomyacin?

    Sorry to report that I I did almost two months of IV vancomycin recently and it didn't do anything for me. I'm starting to fear I'm beyond repair. We have tried several combinations of IV antibiotics and I'm not any better. I think We waited too long until a proper diagnosis, and now my immune...
  10. Antares in NYC

    Another celebrity comes out: Kris Kristofferson finds Lyme treatment has improved his failing memory

    He was first misdiagnosed with Alzheimer’s and dementia. Turns out he had Lyme, and the treatment is improving his severe memory issues:
  11. Antares in NYC

    Great ME/CFS & Lyme awareness videos by Ren Gill - must see

    Hi gang, I have not posted here in a while. I'm not doing well. My health continues on its spiral down despite heavy treatment, got horrible news regarding brain lesions observable via SPECT scan, and on top of things I lost my job, which now puts me in a very precarious position while drowning...
  12. Antares in NYC

    Extremely upsetting SPECT scan results: brain lesions! What now??

    I'm so upset and shaken I can't even type this note right. I just read the reports from two tests that I had at a major hospital last week. I haven't talked to any of my doctors yet (waiting lists) but left them voicemails to call me back when they can. The test were conducted to assess my...
  13. Antares in NYC

    Comment by 'Antares in NYC' in 'Help me solve this riddle: the medications that kept me symptom-free for a full week'

    Hi @Enough_is_Enough: no they didn't use that for general anesthetic. They used Midazolam and Hydromorphone for the anesthesia, only during the first 24 hours of my hospital stay.
  14. Antares in NYC

    This disease is bizarre!

    Yes, yes, yes! I experienced something very similar in three occasions, but the last one of the three was the clearest and longer lasting remission. I totally feel your pain. I had a taste of full normalcy, only to be taken away again. I did share those experiences with Phoenix Rising in these...
  15. Antares in NYC

    Rituximab with a TBD

    This may tell us that very specific subsets of CFS folks will not benefit from Rituximab, particularly those with an active infection, specially those TBD infections that cause immune suppression in the first place. For once I don't feel like throwing something at my computer screen at the mere...
  16. Antares in NYC

    Scared after reading this - brain fog linked to dementia and Korsakoff's psychosis??

    Hi @clairelou: If it serves you of any consolation, I have had severe brainfog since I first fell ill 17 years ago. Seventeen! Time flies, dammit! During these 17 years, I have had three unique instances when the brainfog lifted. Two of those instances were moderate, but the last one was...
  17. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    I suggest you guys check the comments section for the replies to this study. Mostly come from doctors. They are nailing it: http://www.nejm.org/doi/full/10.1056/NEJMoa1505425#t=comments Most comments point one interesting thing about the study that seems to completely contradict its premise...
  18. Antares in NYC

    Science Deniers (CFS and CBT/GET?)

    I mean, when they consider a FOIA request for data on their own research studies a "vexatious" insult to their professional integrity... well, then anything can be turned into a "threat". Mind you, I don't doubt there are people out there inappropriately expressing their anger at the neglect of...
  19. Antares in NYC

    Science Deniers (CFS and CBT/GET?)

    I mean, the article is so heavily patient- and victim-blaming that it's shocking. Yet zero evidence in regards to the alleged threats and harassment, as usual.
  20. Antares in NYC

    Science Deniers (CFS and CBT/GET?)

    I had a chance to read that aberration of an article before it was pulled out. It would make your blood boil. It reads as if dictated by Wesseley himself, even denying that ME/CFS had any physical components, all psych. The author of that thing, Julian Vigo, should change her title from...
  21. Antares in NYC

    Dr. Horowitz on Chronic Lyme

    What? Dr. Horowitz pushing his books and website? You don't say! (clutching pearls) :rolleyes: The guy knows his stuff, but boy is he a persistent self-promoter. While this is something I don't personally like about him, I have to say it has gone a long way to inform the public about Lyme, TBDs...
  22. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    The problem Duncan, is that 200 media organizations are not going to parrot what Lorraine or Dr. Lewis, or Dr. McDonald have to say about this study. The IDSA folks, as you well know, know the media game very well. All you have to do is feed them pre-chewed media morsels they will publish...
  23. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    Very, very good point. I think it would be wise for ILADS and other Lyme patient associations to start getting ready, because IDSA will use their full media power on that release, just like they have done this week. The same day this Dutch study was published by the NEJM, there were articles in...
  24. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    Some folks are posting some very good comments in response to the study: http://www.nejm.org/doi/full/10.1056/NEJMoa1505425#t=comments
  25. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    Whatever. Thanks for your opinion and your apologetic stance towards IDSA. At this point, based on your very transparent position, I don't care about continuing a conversation with you. I've suffered with this for years, and it has ruined my life. I have tested CDC positive consistently.
  26. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    I hear your anecdotal evidence, but I also have anecdotal evidence of my own: I have met two people who recovered from years of Lyme hell by long term antibiotics, at about 18 months in average. One of them --a former nurse-- is now training for the NYC marathon! All this study tell us that a...
  27. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    That would be awesome if they actually did spend money to study chronic Lyme properly. Unfortunately, that is not the case. Over the last 20 years most official efforts by IDSA/NIH/CDC have overwhelmingly gone towards denying the existence of chronic Lyme, discard chronic patients as lunatics...
  28. Antares in NYC

    March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

    That actually didn't take too long. The execrable Wormser was at the ready to give his opinion that people with long term symptoms of Lyme don't really have Lyme: http://www.webmd.com/arthritis/news/20160330/study-longer-term-antibiotics-wont-ease-chronic-lyme-disease And Dr. Charles Ericsson...
  29. Antares in NYC

    Results for Lyme...

    I'm not sure if it's only specific to that species, Duncan, but the fact that this new microbe is known to eat away the cellular mitochondria (the "motor" of the cell) just keeps me thinking. One of the main effects of Lyme is mitochondrial dysfunction... Lyme: Inflammation, Oxidative Stress...