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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. viggster

    Marketplace radio wants people who made disability settlements in 2018

    Hello - The US radio show Marketplace (widely distributed) wants to talk to people who signed and received settlements with private disability insurance companies in 2018. The new tax law is making these settlements less attractive by now taxing the associated attorney's fees. (I found out the...
  2. viggster

    New US tax law - attorney's fees no longer deductible

    Well this is getting off-topic but the tax bill was done without any hearings, and largely in secret.
  3. viggster

    New US tax law - attorney's fees no longer deductible

    Yes, it's double taxation of the attorney's fees. One of many unintended consequences of a tax bill that got rammed through Congress without any hearings or any common sense.
  4. viggster

    New US tax law - attorney's fees no longer deductible

    No, long-term disability settlements are a different category than personal injury settlements. A personal injury settlement is when, e.g., a pedestrian gets hit by a car and the driver's insurance pays the injured party. Completely different situation.
  5. viggster

    New US tax law - attorney's fees no longer deductible

    Hello - This year I reached a settlement with Prudential over my long-term disability policy. That is, they bought me out of the policy after a favorable court ruling. My attorneys, who took my case on contingency, were paid 1/3 of the settlement. Well I just got a nasty shock from my...
  6. viggster

    started IVIG this week

    Yeah, I don't know how to proceed. I just lucked into 40g of the stuff and don't know what to do with it.
  7. viggster

    started IVIG this week

    I got one-and-a-half doses before Medicare cut me off. After 4-5 days of adverse effects, I did notice some improvements in weakness and fatigue and brain fog. I would expect the benefits to be cumulative over many months if I can figure out how to continue treatment. A friend donated the 40g...
  8. viggster

    started IVIG this week

    Well I managed to obtain 40g of immunoglobulin and have it in my fridge. I guess I'll try to administer to myself subcutaneously. Anyone have any idea how to get ahold of the necessary pump?
  9. viggster

    started IVIG this week

    Well, things were going a little too well. Medicare is now denying the IVIG. They told the infusion center my diagnoses do not qualify for treatment. I think the doctor wrote small-fiber neuropathy and myositis (not otherwise specified). So I guess we have to appeal. I don't have any experience...
  10. viggster

    NIH still needs patients

    I hope she explained that by "proof" they will take things like a documented visit to a doc who records a fever. That's what I had and they accepted it. I did not have any bloodwork that indicated an infection for my sudden onset.
  11. viggster

    NIH still needs patients

    Yes, participants get many results that can be helpful in guiding care: Tons of bloodwork, MRIs, tilt table tests, spinal fluid analysis, others. Patients do not see results classified as research, such as analysis of immune system proteins, for two reasons. First, the samples are being pooled...
  12. viggster

    started IVIG this week

    They gave me Tylenol and Benadryl before each infusion.
  13. viggster

    started IVIG this week

    They maxed out at 120 (cc's per hour? Some other unit??). Started at 30 and worked up. Each 40 g bottle took about 5 hours.
  14. viggster

    started IVIG this week

    Well I spoke too soon about how easy things have gone. Got a bad neck/headache starting on day two after treatment ended, and bad diarrhea on day three. Both are not unusual with IVIG. So now that I'm 6 days out from the end of the three infusions, I'm still having adverse effects. They can take...
  15. viggster

    started IVIG this week

    Three days, about five hours each day. The infusion center at my local hospital is very comfortable and the nurses are great. So it wasn't tough being there. The recliners vibrate. :) Felt extra-tired the first two evenings. The first two days after I was finished, I had a bad...
  16. viggster

    started IVIG this week

    Thanks. I think the main SFN symptoms have been: - Numbness and tingling in feet, legs - Sensitive skin (went through a period where even clothes were painful; better but still a problem now) - Stopped sweating. I think this is related to SFN. - Intense pain in legs, which is probably more...
  17. viggster

    started IVIG this week

    I had a muscle biopsy at Stanford in January that showed the inflammatory myopathy, and a skin biopsy last fall that showed the small fiber neuropathy. I repeated those biopsies at NIH but they'll be doing a lot more with the samples, especially the muscle. There are six or seven experiments...
  18. viggster

    started IVIG this week

    Just thought I'd let folks know I started IVIG this week. Two grams per kilogram induction dose followed every three weeks by 1g per kg. This is the emerging dosing schedule used for small-fiber neuropathy. If you download the latest "IG Living" magazine (yes, it's a thing!), there's a short...
  19. viggster

    NIH still needs patients

    International patients welcome in the NIH intramural ME/CFS study. Call/email Angelique Gavin: angelique.gavin@nih.gov and (301) 402-0880
  20. viggster

    NIH still needs patients

    Sure. It's a sealed room, a little like a 12' by 12' prison cell. :) Air is blown in (it's noisy) and collectors on the ceiling pull in and then analyze everything the occupant exhales. Calories coming in are counted and controlled. They feed you through a little airlock door. Turns out the...
  21. viggster

    NIH still needs patients

    Right, the exercise and PEM studies are integral to the study. So volunteers are signing up for some pain, but to deeply study PEM they need to see it. They do blood draws and interviews at 1 hour, 4 hours, 24, 48 and 72 hours after the exercise, trying to capture the shape over time of whatever...
  22. viggster

    NIH still needs patients

    It was hard but it's supposed to be. The testers ask participants to ride the bike until they can not ride anymore. I hit my limit after 7 minutes of increasing resistance.
  23. viggster

    NIH still needs patients

    Yes that requirement shrinks the patient pool substantially. Here is the NIH response in their FAQ as to why they're restricting the study to sudden onset cases: 1. Why is the focus of the study on post-infectious ME/CFS patients? People have symptoms of ME/CFS that arise from many potential...
  24. viggster

    NIH still needs patients

    I asked someone to post on S4me. If someone wants to post on Reddit, feel free to take my text.
  25. viggster

    NIH still needs patients

    Hi - I'm nearing the end of week 2, visit 2 of the NIH study. Thought that I'd reiterate to the community that the study is still recruiting and still needs patients. To volunteer, contact patient coordinator Angelique Gavin (who is lovely): angelique.gavin@nih.gov and (301) 402-0880. To...
  26. viggster

    ME:Unknown cause, no cure new hope

    You need to ask the publisher. Different publishers adhere to different rules.
  27. viggster

    Muscle atrophy not related to disuse

    Interesting. Which test includes these antibodies? I did the CellTrend panel and some other panel with Kaufman whose name I'm forgetting. I am going ahead with IVIG after I get back home from NIH in a few weeks. My local doc wrote a letter to Medicare to get it for me. I guess Medicare does not...
  28. viggster

    Muscle atrophy not related to disuse

    Hi...I recently had a muscle biopsy at Stanford that showed inflammatory myopathy and type II fiber atrophy. I will be going back to NIH March 3 for part 2 of the study. NIH is going to look at the slides from Stanford but they may decide to do another biopsy too because their procedures are...
  29. viggster

    MRI shows no signs of MS, but...

    Small fiber neuropathy can cause some of the problems you're describing. There's a test from a lab called Therapath that will show it. My doctor ordered the test - it's two small (3 millimeter by 1 millimeter deep) skin biopsies. This condition is common in ME/CFS - the small nerve endings near...
  30. viggster

    Dr Nath's intra-mural study at NIH is currently recruiting

    I don't think so. NIH staff told me they plan skin + muscle biopsies. What would you want to look for in lymph nodes? Those are typically biopsied in various cancers.