Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Help identify this rash please

Discussion in 'General ME/CFS Discussion' started by roonie, Oct 29, 2016.

  1. roonie

    roonie

    Messages:
    74
    Likes:
    30
    Hello..i keep getting this rash everytime i have a relapse. Since most of you have been searching for a very long time and are much more educated than many GPs i thought i would post this in hopes of someone knowing what illness this rash may be associated with. thanks so much.[​IMG][​IMG]
     
  2. erin

    erin Senior Member

    Messages:
    752
    Likes:
    2,117
    Looks like urticaria. Do you have other symptoms as well as the rash?
     
  3. roonie

    roonie

    Messages:
    74
    Likes:
    30
    oh yes...ive been through hell and back with this for many years with severe chemical sensativities, gut problems, nightmares, fever and on and on and on......AND NO HELP FROM THE CANADIAN HEALTH SYSTEM !!!!!!!!!
    I will let others reply before telling what i believe it to be.
     
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,007
    Likes:
    5,084
    USA
    No one can make a diagnosis or give medical advice, but maybe @Jonathan Edwards can have a look.
     
  5. roonie

    roonie

    Messages:
    74
    Likes:
    30
    im not looking for medical advice...just hoping someone may have seen this before and get me in the correct direction. If we dont start talking outside the doctors office we are doomed. Thats how all of these websites got started in the first place...desperate people with little to no help.
     
  6. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Hi @Ronnie, the thing is we know nothing about your medical history, what meds you take, whether you take supplements, whether you are allergic to anything, what laundry soap you use, how long you've had it, what makes it worse, whether food can make it worse, and whether it's itchy.

    That's why visiting a professional is important, so they can assess and treat appropriately.
    Best wishes.
     
  7. Dechi

    Dechi Senior Member

    Messages:
    944
    Likes:
    1,720
    Have you been checked for SAMA ? I know it gives various skin rashes and breakouts.
     
  8. Tammy

    Tammy Senior Member

    Messages:
    1,074
    Likes:
    1,406
    New Mexico
    Is the rash itself painful?
     
  9. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,405
    Vancouver, British Columbia
    @roonie Rashes can be very hard to diagnose. You can't blame the Cdn Health care system for that. My mom suffers with rashes and so far none of the dermatologists she has seen have been able to tell her what causes them for her.
     
    alkt likes this.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,910
    Likes:
    12,761
    Sth Australia
    best to give more info on the rash. ..is it itchy etc . Its hard to even guess what a rash could be just looking at it.

    Doctors often struggle to diagnose rashes, I once had a rash on my arm and saw 3 different doctors about it and got told 3 completely different things. It turned out all 3 doctors were wrong as I finally worked out the answer for myself, Im sure it was a darier sign which is seen in systemic mastocytosis people (the stupid doctors should of biopsied it as it would of probably lead to me having a mast cell disorder diagnoses now).

    .....

    I used to get rashes looking exactly like the one in your pic and a dr told me it was heat rash (mine would often get itchy but Ive read that heat rash isnt always itchy). The chest is probably the most common place to get heat rash though can appear in other places too
     
    Last edited: Oct 30, 2016
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,232
    Likes:
    31,933
    This could be a common allergy to medication, food or washing powder or it could be a sign of some serious disease. It has nothing to do with ME/CFS as far as I know. You need to get a medical opinion. As the others have said we do not give advice on diagnosis or treatment.
     
    CFS_for_19_years and aimossy like this.
  12. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,310
    Likes:
    12,093
    U.K
    Rash with chemical sensitivity, gut problems etc rings alarm bells with me for MCAS/Mastocytosis. Have you considered this as a possibility?

    MCAS has been linked with ME in some patients.
     
    Dechi and aimossy like this.
  13. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    @justy you may have seen I agree with @Jonathan Edwards here's a bit of fresh info re ME/CFS and Allergy. I'm just planting this here because it's new info. I also feel you have to get a rash like that checked out for things like Jonathan Edwards said.

    Tweets from the IACFSME conference regarding a 200 cohort paper from Levine, Hornig et all paper, via Cort Johnson. Plus also a paper abstract from the IACFSME programme on Allergic Phenotypes.
    Tweets from Cort:

    "Levine - Allergic subgroup - not IgE mediated more associated w/ non-allerginic rhinitus, Mast Cell activation, autonomic

    Levine - Big study! @200 patients in 5 sites- 80% - "any allergy, Sinusitis and hives best distinguished ME/CFS and HC's

    Levine - ME/CFS patients with sinusitis or hives experience greater pain than patients without sinusitis/hives

    Levine - Plus these patients had much, much higher prevalence of migraine and fibromyalgia..suggests histamine/mast cell

    Levine - mast cell may contribute plus GI symptoms also occur - and could be due to histamine, next step - immune testing

    Levine - both mast cells and neurons secrete nerve growth factor and substance P plus there's tryptase"

    Page 50 IACFSME Programme, papers and posters abstracts http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx

    "Allergic disorder phenotypes in ME/CFS and patterns of medical comorbidity and clinical dysfunction


    Susan Levine,1 Joy Ukaigwe,2 Xiaoyu Che,2 W. Ian Lipkin,2,3,4 Mady Hornig2,4 Affiliations: 1Levine Clinic, New York, NY; 2Center for Infection and Immunity, Columbia University Mailman School of Public Health, New York, NY; 3Departments of Neurology and Pathology, College of Physicians & Surgeons, Columbia University, New York, NY; 4Department of Epidemiology, Columbia University Mailman School of Public Health, New York, NY

    Background: Atopic disorders are more common in ME/CFS and have been associated with autonomic disturbances in some studies. Assessment of clinical characteristics and comorbidity among ME/CFS subjects with allergic diatheses may improve differential diagnosis and treatment selection.

    Objective: To determine whether certain allergic disorders are more common in ME/CFS than in controls, and to compare clinical characteristics (severity and pain ratings; medical comorbidities) among ME/CFS subjects with and without certain allergic comorbidities.

    Methods: Questionnaire data from the Chronic Fatigue Initiative (CFI) Cohort study (five US sites) were used to compare the frequency of allergic and other somatic conditions in ME/CFS (n=202 meeting Fukuda and/or Canadian criteria) and control subjects (n=202). Machine learning techniques (LASSO, Random Forest) were used to derive phenotypic subsets that differed between ME/CFS and control groups. SF-36 subdomain scores (Wilcoxon rank-sum tests) and prevalence of medical comorbidities (chi-squared tests) were compared between case groups meeting criteria for the two derived ME/CFS phenotypes. Orthostatic pulse changes from physical exams were also compared across phenotypic subsets. Adjustments were made for multiple comparisons.

    Results: Machine learning approaches identified chronic sinusitis and hives as the allergic disorders that best discriminated cases from controls. ME/CFS subjects with sinusitis/hives (ME+S/H) had more severe pain (SF-36) and gastrointestinal disturbances, endocrine and inflammatory problems (DSQ) (all padjusted=0.029) than those without these allergic comorbidities. ME+S/H cases also had higher prevalence relative to ME subjects without sinusitis/hives of fibromyalgia (p=0.029); migraine (p <0.0001); tension headaches (p=0.0002), low back pain (p=0.002) and neck pain (p=0.003). Pain ratings were also higher in ME+S/H cases. Orthostatic pulse changes were equally common in ME/CFS with and without sinusitis/hives.

    Discussion: A history of sinusitis and hives is predictive of an ME/CFS diagnosis and appears to define a novel phenotypic subset of ME/CFS with distinct patterns of comorbidity and exaggerated pain symptoms. Future studies will investigate whether S/H features are associated with altered immunity (Th2 dominance), including secretion of mast cell products that alter pain pathways. ME+S/H cases may represent a distinct subgroup with unique patterns of somatic comorbidity that may help predict response to selected therapeutic approaches.
    Acknowledgments: Hutchins Family Foundation/Chronic Fatigue Initiative and the Chronic Fatigue Initiative"
     
    Last edited: Oct 30, 2016
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,232
    Likes:
    31,933
    The difficulty I have with this sort of report is that Dr Levine is of course an allergist. Of all the people I looked after when I was practicing who I would now include in an ME/CFS diagnosis I do not remember any having allergies or sinusitis. They all had joint pain - because I was a rheumatologist and that is where people with joint pain go.

    I think there is also a problem asking patients and controls about these things. If my GP asked me 'do you suffer from bouts of hives or sinusitis' as part of a health check I would so no. But if she said 'if you think back have you had repeated episodes of hives or sinusitis' I would say 'well actually yes, I used to get hives a lot as a kid in the sun and a few years back I kept getting muck coming from my sinuses for weeks after colds.'

    This is why we need carefully documented population based research. Allergic conditions may be associated with chronic fatigue in the way that lupus and multiple sclerosis are associated with chronic fatigue. I am not sure one can say more than that.
     
    Hutan and aimossy like this.
  15. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    Good points Jonathan.
    The paper isn't published yet just the conference abstract. It would be easy to find something your looking for and we don't know what sorts of questioning was going on with this, maybe it's going to lead to something else.

    Anecdotally I could class myself easily into what's being described although was sent to rheumatology due to certain symptoms and bloods along with arthralgia. Pain I wouldn't say is at Fibro level though for me.

    Your last paragraph @Jonathan Edwards is particularly frustratingly savy. Ha!
     
    Last edited: Oct 30, 2016
  16. roonie

    roonie

    Messages:
    74
    Likes:
    30
    I have been told by an immunologist that i have cfs. I get this rash after what seems like a flu flair up. The rash shows up about 5 days after getting the "flu". The rash stays for about 6-10 days then subsides. After hundreds of doctor visits while trying to find out what was wrong with my body (slow onset cfs) i found out from my mother recently that i had scarlet fever as a child. I finally punched in the words "scarlet fever" into google images and my rash matches to a tee. I then went to a couple sites (webmd etc.) and read about scarlet fever. I now believe this to be what i have is scarlet fever that keeps rearing its ugly head. That is why everytime i go on antibiotics, i improve but then over time fall back into poor health. I have this through my joints, my lymph system is jambed up (lumps). Interestingly enough while place in hospital for a herniated disc way back in 1993 my body did not want to eat. I stopped eating completely and on the fifth day i began to eat again as the nurses were concerned. When i began to eat again my jambed up immune system began to work again. I left the hospital with no back pain whatsoever and everything that was supposed to work seemed to be working in my body.

    I forgot to mention that my slow onset of cfs began way back in a motel room in a small town with well water. I got very sick on evening (vommetting, diehrea)(1980ish) then developed an ulcer about a month later. Been tested for Hpylori several times.
    So after getting the ulcer my life just slowly began to get worse with chemical sensativities, sore joints, aching jaw and gums until i moved to a home with hardwood floors that i decided i would refinish myself. I was applying the polyuerothane finish and a dust storm blew up outside which prompted me to close the windows. It was this overexposure to this chemical that started my immune system to fight and fight and never stop. I like most had to sleep in a tent in the back yard because everytime i would go in that house i would break out in this rash you see in the above pictures.The floor finish had benzene and tolyuene both carcenagenic by todays standards.
    I am so very curious about this rash because it and all the symptoms of scarlet fever seem to match. The fact that eurothrymycin is the drug that seems to help me is the drug used to treat scarlet fever. I had scarlet fever as a child. All of us three children had scarlet fever. My brother and I did not do to well in school and my brother had it the worst. He ended up in a school for slow kids back in the early 70s. I quit in grade 9 and had no drive to succeed whatsever.I now know this illness to be the reason. Ive been unwell all my life.
    When i get these flare ups with rash etc. my ESR becomes elevated which is seen with scarlet fever. Its almost as if scarlet fever pops up in my body when things get stressed. Living with this is a big stress. I cannot work due to my chemical sensativities etc.gut issues etc.
    Ive been poor for so very long. This has effected my whole family in ways i cannot describe.
    The only other thing i have to add is that when i was 17 a doctor gave me more than a years worth of tetracycline for acne i had on my back. The tetracycline never did take my acne away...sunlight did. Could it be that the drug tetracycline killed all my good gut bacteria? It seems the medical establishment here has now , well lets say, blacklisted me and washed their hands of me up here in Canada like they have with most of us. The worst thing i did was go see a phyciatrist and they decided to tell me i had a mood disorder...Yes...people get moody after not getting any answers for something as severe as this!!! I have one doc here that listens to me and is not a part of the medical system here. I now have low C3 level which he tells me is linked to lupus and other immune disorders. AND THATS ALL I HAVE TO SAY ABOUT THIS..lol. You see i still have my sense of humor. lol just hoping someone may have some insight to this rash on this websight. thanks so much
     
  17. roonie

    roonie

    Messages:
    74
    Likes:
    30
    Ive never heard of this MCAS..tell me more please
     
  18. erin

    erin Senior Member

    Messages:
    752
    Likes:
    2,117
    @roonie sorry to hear your story. Scarlet fever sounds pretty bad.
     
  19. roonie

    roonie

    Messages:
    74
    Likes:
    30
    its ok...i googled it. Yes i believe i have this. I had a complete blow up of my immune system...fight...fight...fight until there is nothing left of me. The fight gaps are very wide now. It one point i could feel the fight and the resting of the immune system getting ready for the next fight. That was many moons ago. Sadly i was told it was all in my head. My bedroom smelt like burning rubber tires...thats the only way i can describe the smell. My bedsheets would be brown after a week. I think im in big trouble now. My immune system has been drained for a long time now. To this day i can rub my skin and smell this odor that spilled over into where it should not be.
     
  20. gregh286

    gregh286 Senior Member

    Messages:
    606
    Likes:
    844
    Londonderry, Northern Ireland.
    hi roonie.
    i have angioedema.
    if this is urticaria that you have then angioedema is a close relative.
    i also craah in angioedema attacks.
    when.i questioned a specialist about it there is not a connection of urticaria..angioedema to cfs.
    actually urticaria pretty common.
    get a definitive diagnosis on the rash and take from there.
     
    merylg likes this.

See more popular forum discussions.

Share This Page