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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    I need to sleep! Help !!!!!

    What did they find with your sinuses and what did they do? Did you get an oral appliance for your mouth? What type of doctor did you go for that? Did you get a sleep oximeter they gave you to test you at home? Did all your health problems go away like brain fog, fatigue, muscle pain etc? Thanks
  2. S

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yeah I know her and the site in the comments. Ascor is the fda approved prescription. Otherwise do ampules but need filter and hypodermic needles then https://vitaminb12direct.com/product/injection-vitamin-c-500mg-50-amps/...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    You can't absorb much orally, though you can absorb more in liposomal form, but I can't because of my small fiber neuropathy from anti-vinculin. has trouble with fats, including lecithin. The idea is to use it as an immunomodular. Perhaps lowering il-2 and raising interferon type 1. Ampligen...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I did the upright dynamic MRI. It came out normal, but I didn't take it to any surgeons specialized in this and I don't exactly trust them. There is a person who has a lot of videos on EDS and ME/CFS and got some of these surgeries, which I really hoped she wouldn't get. It looks like it didn't...
  5. S

    Anything new in cfs research ie Antibiotics

    Many people have heard of Dr. Teitelbaum in the ME/CFS world. I just found this article of his from over 10 years talking about using statins to treat a chronic viral infection as a new idea for ME/CFS. I haven't heard any updates though...
  6. S

    Anything new in cfs research ie Antibiotics

    I was just looking up to see if anybody was posting about pneumoniae infections causing ME/CFS / fibromyalgia etc. I have heard of these many times over the years but just saw a video from a doctor saying that based on when your symptoms started if you had mono then think Epstein Barr and if you...
  7. S

    Where can I buy high-quality melatonin online? I am in the UK.

    @daveu The 300mcg is coming from the Sundown bottle. I'm pretty sure that is the exact patented dosage. It may be 270mcg or something, but that is right. Some of their bottles even had a logo saying patented level. I learned about this from reading an article many years ago talking about the...
  8. S

    Where can I buy high-quality melatonin online? I am in the UK.

    @daveu You may be able to try an alternative approach that does not use melatonin. Some D3 for blood levels between 60ng/ml to 80ng/ml and magnesium glycinate may help. You can also try B-complex vitamins, but B6 can be dangerous, so I would avoid that, which is unfortunate because it can be the...
  9. S

    Where can I buy high-quality melatonin online? I am in the UK.

    I don't know who will ship to the UK. But one of the few brands which sells the correct dosage is Sundown. The correct dosage is 300mcg. Most brands sell tablets with 10 to 20, or more times the correct dosage in order to avoid paying the patent fee. Melatonin should be the most effect with the...
  10. S

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    This is exactly what I was thinking. Everybody produces some level of antibodies I believe for most things, or they are detected as such. However, it is only when they are elevated beyond some determined point it is considered to be pathological. Thus, the compression may be trying to...
  11. S

    Tongue Issues

    I developed gographic tongue after developing ME/CFS/Dysautonomia. It doesn't look like white stuff normally. It is more like spots that are extra red. The rest of the tongue can look white a little depending on how white your tongue is. But that is because that is the regular part of your...
  12. S

    Results of the German Cell Trend laboratory for POTS

    Very interesting. Did you get the whole panel tested like I did? What were the numbers? Also even if there are these antibodies I believe the root of the problem can still be in the neck and testing for craniocervical instability and similar condition s is important which I will do. MRI upright...
  13. S

    Results of the German Cell Trend laboratory for POTS

    You can see my results login to see. I have the AT1R highly elevated as well as the Alpha-Adrenergic-1 and Muscarinic-Cholinergic-4 antibodies. These latter two are elevated in people with dysautonomia according to presentations from Dysautonomia International. So, as far as I'm concerned I...
  14. S

    Is ME/CFS a Rich Man’s Disease?

    You may want to look for a dysautonomia specialist instead of just ME/CFS. As far as being a state resident, who know. Obviously it is easier for people who are in state to make return visits long term.
  15. S

    Potential Clinical Sign for ME/CFS

    I just learned about all this and I looking for people who also know about this. As far as the point, I think I have more a tender point on the right side. I thought I might have craniocervical instability because my earliest symptoms seemed to start with stiff neck and pain between shoulder...
  16. S

    Tongue Symptoms

    @Charcey97 I'm not sure I have craniocervical instability. I've been learning about it though. I think there is something going on with the neck. I was going to get a dynamic (flexion, extension, rotation) standing MRI scan, but I'm not sure now. I think the neck could be part of it. However, I...
  17. S

    numbness

    I don't think you need b12 unless you are a vegetarian. You should know though that if you are vegetarian you can't test b12 directly because it will be false negative. There is some other test. I don't remember the name, but it is very important. Also, if you really had a vegetarian b12...
  18. S

    Brain Damage?

    @crypt0cu1t Sounds like low blood to the brain. You should find a dysautonomia specialist. They are often cardiolgists or neurologists. https://www.dinet.org/ has a list. That should be good for a start. There are also some major hospital centers which are probably even better. I went to a...
  19. S

    Disability/Wisconsin

    If you became disabled while you were employed then the coverage should be good. Though, I'm not sure why you left or where you talk about that. You would normally want to transition to short term disability and then long term. If you have any doctor's visits documenting your condition, even if...
  20. S

    Tongue Symptoms

    @Belle72 I get the tongue numbness and stinging. It is related to the neck. When I start poking around on certain parts of the back of my neck it causes it. I back of quickly as I'm afraid to cause damage and have it last. I also have face numbness and stinging below the eyes that comes and...
  21. S

    Attention Deficit Disorder (ADD) or just part of CFS?

    @helios No, I had intense energy and euphoria in the years after once I stopped taking the medications. I now want to investigate cervical instability and brain stem issues. I meant to investigate that a while back. I need to get a scan and see a neurosurgeon who is knowledgeable on that. It is...
  22. S

    Attention Deficit Disorder (ADD) or just part of CFS?

    @Webdog I'm not sure, but I think the hypomania, eurphoria etc may have been caused by taking adderall and then concerta. When I stopped taking them (because they caused anxiety) I started developing depression and then about a year later extreme euphoria. I believed that perhaps thost drugs...
  23. S

    Attention Deficit Disorder (ADD) or just part of CFS?

    @Webdog I had ADD (brain fog, not ADHD), random tinnitus bursts and weird vision contrast/tint attacks for decades, since birth essentially. Then I started experiencing some weird bipolar stuff in late teens and early twenties for a few years that felt like extreme depression, amazing euphoria...
  24. S

    Celltrend Results - I am very happy

    Also, another update on the shipping. Fedex invoiced CellTrend $50 for my delivery, which makes no sense. FedEx and Germany keeps acting like I'm importing some sort of commercial product subject to tariff of some sort. I think the FedEx guy shipped it wrong. Also, FedEx said they would call me...
  25. S

    Celltrend Results - I am very happy

    It looks like they do them in batches periodically. At the website it says next determination on 8 -Nov, so I'm guessing that is when you will get your results. https://www.celltrend.de/en/next-sample-determination-on-08-11-18/
  26. S

    Celltrend Results - I am very happy

    I got my results today. Some things are positive. Here are the results. CellTrendResultsPNG by scisolver posted Oct 25, 2018 at 10:08 PM
  27. S

    Celltrend Results - I am very happy

    @Gingergrrl @Forçe e Honra I got a response yesterday that my sample arrived at CellTrend in good condition and they are going to proceed with testing I responded asking for confirmation that the sample arriving after 6 days was not a problem and they confirmed it was not. So, that was...
  28. S

    Celltrend Results - I am very happy

    @Gingergrrl I used the one on the instructions lab-service at celltrend dot de @Forçe e Honra I'm going to go to a different location next time. There is another shipping center. I just went where the closest FedEx office told me to go, but there is another. I couldn't drop it off at the FedEx...
  29. S

    Celltrend Results - I am very happy

    The other frustrating thing was the clerk at FedEx insisted I show a home utility bill as proof of home address to ship. That is rediculous and I talked him out of it, but he said he would only do it this one time for me. I called the manager later and worked it out and they said that is not...
  30. S

    Celltrend worth it if I don't have POTS or PEM?

    @Gingergrrl Yes, I'm in the USA and I'm on the east coast, so I'm closer to Germany than you are.