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

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  1. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    to update.... I saw dr. Elson, and stayed with him. I didn't really agree with Dr. Enlander. He told me I was classic CFS/Fibro. I have pain, but it does not seem to be consistant with Fibro. I followed my gut. He ran igenex labs for lyme, I came back poss igm wb, but neg igg. Which...
  2. G

    Can you combine treatments from two drs? Is it safe?

    hi... I have been now seeing a functional md. This seems to be helping where he is looking at a lot of different things and treating them all together. I chose a new pcp and she seemed fine with everything. Maybe not so if things change,,,, we'll see
  3. G

    confused! 2 doctors, different lab results???

    yes, I would absolutely share. As soon as I get the second set I will be able to see them side by side and I will post them
  4. G

    confused! 2 doctors, different lab results???

    yes, I have the copy of the first set of labs and the copy from the other set coming in the mail to me. THank you
  5. G

    confused! 2 doctors, different lab results???

    yes, I agree with that because I have been dealing with dr.'s like this for some time now. But I have two dr.s, who deal with CFS patients, and they are running blood tests on the same viruses. How can a lab show there is no virus present one day, and then show it 6 times the normal range on...
  6. G

    confused! 2 doctors, different lab results???

    As if I couldn't get more confused. I saw two different doctors for consults. Dr. Elson at Northampton Wellness, and Dr. Enlander. They both ran numerous labs. They both had completely different reports back with labs. Dr. Elson reported that I did not have any of the viruses commonly...
  7. G

    Positive antinuclear antibody (ANA )result?

    My ANA is high, 1280, diffused. This is the highest it has been. Though for the past 2.5 yrs it has hovered 640, 320, now 1280. Tests for lupus, ra, sjorgens all neg. Oddly, when my symptoms flare, the ANA goes up. They tell me it's a phenomenon that makes more work for the Rheumatologists...
  8. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    No, no toxic mold, I don't think...though the allergy tests all came back fine
  9. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Thank you for that. You have no idea how helpful that information was to me.
  10. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Thank you...I am learning this. It is just so hard when I feel like I have lost so much valuable time over the past 3 yrs being passed from dr. to dr. I am looking forward to some sort of guidance and direction. Where my pcp could offer none.
  11. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Oh I forgot to add, I have celiac disease and have been 100% gluten free! skin care, makeup hair products as well. Am really mostly paleo bc tried taking the other grains out as well. They thought I was having problems with trace glutens so they took me off all processed foods. Oddly, every...
  12. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    I spent 5 hours in Enlanders office. 2 hours until I spoke to him, 3 hours later my exam...they sent the tech home and couldn't do the nerve test....It was a nightmare. I felt the same way, that he is just treating the masses with the same bandaid. Which I think that a lot of dr's do, and...
  13. G

    Can you combine treatments from two drs? Is it safe?

    Thank you for all of your input. This has been a whirlwind of a week. I learn so much as I go. My husband for the life of him can't understand why I "seem" worse today than the other day. I'm not sure he will ever get it. Sometimes I have to remind him..."You know I'm sick, right?" I...
  14. G

    Can you combine treatments from two drs? Is it safe?

    to be honest, I was trying to make appointments with doctors to see who could help me. Pcp diagnosed CFS through exclusion and told me the only thing I could do was take antidepressants and get acupuncture. The appointments were originally a month apart. But got changed. I am at the point...
  15. G

    Can you combine treatments from two drs? Is it safe?

    I went from no dr. offering me help to 2 dr's promising to help. Now I'm confused. Can someone advise me on what they may have done, or what to be wary of? I saw Dr Elson at Northampton Wellness in MA. He had a lot of thoughts about what has happened to me. Thinks there is definitely an...
  16. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    I made some calls today. Left a lot of messages all over the state of MA. But more important I have an appointment with Dr. Enlander on Jan 28th
  17. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    what is the general consensus between Klimas and Enlander?
  18. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Thank you all so much. It's nice not to feel so alone. JT, I can't tell you how much those caps help. I am starting to recover from a really bad few weeks. I had another endoscopy on Tues. I've been incapacitated since then. Yesterday I could speak more. Today I can walk better. Still...
  19. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    I had looked into Enlander I think that I will give his office a call. I know that all of these appointments will take time. I just need to find someone local to start me off on the the right path while waiting for more direction.
  20. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Thanks for the reality check. I feel like my world is spinning out of control. I will take control of this though. Thank you. I did look into the Mayo, and from everything I have heard, I was very suspicious. I don't need another doctor to make me feel like I'm depressed or psychosomatic...
  21. G

    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    I have been through the ringer. my health has been spiraling downward for the past 3 years. There was a period of a few months when things started to even out and even improve slightly. I actually went to Target. Now since this summer, I'm on a steady decline. Been through all the tests...
  22. G

    Good Doctor on Cape Cod?

    I'm curious, did you find anyone good on the cape or south shore/ boston/ new England? I am in Plymouth.
  23. G

    Have been very ill for 3 years since MRSA/ odd "episodes"

    thank you for all of your input. Saw my primary and she is sending me back to oncology to take a look at my bone marrow, due to the bone and spine pain. However, she has already put in my file that through the process of elimination she is diagnosing me as CFS. Told me to get a massage, and...
  24. G

    Have been very ill for 3 years since MRSA/ odd "episodes"

    Thank you for the responses. I have had a tilt table test...ugh that was awful. My bp dropped on the table but stabilized quickly. So they were not concerned about my autonomic function. Right now I am waiting in the immunologist who did some more testing. She was the one dr that was...
  25. G

    Have been very ill for 3 years since MRSA/ odd "episodes"

    Thank you for allowing me to join this board. Two doctors have suggested My CFS to me. I have not been diagnosed formally. I have since the bottom fell out, been diagnosed with celiac disease. I have been tested for lupus, ms, seizures, metabolic myopothies, Lyme, myasthenia gravis, and am...