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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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Hi @perrier it sounds horrendous. I am very sorry.my daughter has now had 6 bleeds, requiring multiple transfusions each time. The bleeding has lasted from 6 to 15 days. Hemoglobin dropping sometimes to 6.
These started 4 years ago.
Is this serious problem related to This illness.
Any leads would be appreciated.
The doctor now wants to do exploratory laporotomy.
She's so weak, I'm terrified she won't make it.
If someone know who this is, please post.@perrier
Just a thought - checking out autoantibodies might be worthwhile. I watched a very interesting video posted somewhere here just a couple of days ago. I think it was a British female professor who has been identifying autoantibodies in a number of people with intractable multi-system illnesses including psychiatric symptoms - and treating them with some significant success. Someone here may be able to point out where that video is - I can't find it.
She might be worth contacting; she seems compassionate and likely to take a moment to reply. Perhaps she could point to someone nearer you who could do similar testing.
One recognised cause of GI bleeding is autoimmunity (perhaps we discussed that on the other thread about GI bleeding).
I and my son are in that in-between zone where we are sick enough to have no energy to chase long shots and are not so seriously sick that we feel a pressing urgency to find an answer regardless. So we wait. But it sounds as though you and your daughter need something quickly.
Wishing you better times.
There are several thread here on auto-antibodies. If you check who posted on those threads, you'll have your answer!If someone know who this is, please post.
Hi @perrier, Steroids in general can cause stomach ulcers. Here is what a quick search yieldedThanks everyone. The other question I wonder about, is can hydrocortisone cause these bleeds. They are dramatic, though. My daughter was put on Cortef 15 mg
Just bumping this. Can anyone tell me where I can find this video about autoantibodies, searching for "autoantibodies" doesn't help find it.@perrier
Just a thought - checking out autoantibodies might be worthwhile. I watched a very interesting video posted somewhere here just a couple of days ago. I think it was a British female professor who has been identifying autoantibodies in a number of people with intractable multi-system illnesses including psychiatric symptoms - and treating them with some significant success. Someone here may be able to point out where that video is - I can't find it.
She might be worth contacting; she seems compassionate and likely to take a moment to reply. Perhaps she could point to someone nearer you who could do similar testing.
One recognised cause of GI bleeding is autoimmunity (perhaps we discussed that on the other thread about GI bleeding).
I and my son are in that in-between zone where we are sick enough to have no energy to chase long shots and are not so seriously sick that we feel a pressing urgency to find an answer regardless. So we wait. But it sounds as though you and your daughter need something quickly.
Wishing you better times.
Scheibenbogen is particularly interested in autoantibodies that might be attacking receptors on neurotransmitters in ME/CFS patients.
Thus far they’ve found increased levels of antibodies against two types of receptors in a subset of patients. The receptors were
- the beta 2 adrenergic receptor – this receptor binds with epinephrine (adrenaline) and plays a key role in regulating the blood flows, muscle activity and breathing.
- muscarinic acetylcholine receptors – these receptors regulate the activity of acetylcholine, the neurotransmitter associated with the parasympathetic nervous system.
Great article Cort. We have started checking the PANDAS autoantibody panel (Cunningham panel) and are finding a good correlation with symptoms (the test is expensive, however). Been hesitant to do Retuxamid because we have found almost all CFS/ME patients have abnormally low CD19/CD20 cells, so not sure if want to lower them even more?? This is great research. Been doing LDN, IVIG and peptide immune-modulators with some success. Looking into doing plasmaphoresis.
Thanks for the link Hutan, not as informative as I hoped though.found it in my youtube history
Jonathon Edwards posted somewhere in another discussion about autoantibodies that the adrenergic and muscarinic AChR antibodies found in that study were probably just a marker of an autoimmune condition rather than a causative factor.Have you seen Cort's latest blog on Health Rising about the IiME conference? It reinforces the likely importance of autantibodies in ME/CFS.
Gastrointestinal Manifestations in Systemic Autoimmune DiseasesI've been looking into antibodies known to cause chronic GI dysfunction but can't say that I have come across GI haemorrhage as a symptom.
In an autoimmune disease, the immune system attacks and harms the body's own tissues. The systemic autoimmune diseases include collagen vascular diseases, the systemic vasculitides, Wegener granulomatosis, and Churg-Strauss syndrome. These disorders can involve any part of the gastrointestinal tract, hepatobiliary system and pancreas. They can cause a variety of gastrointestinal manifestations that are influenced by the pathophysiologic characteristics of the underlying disease process. There is a wide variation of gastrointestinal manifestations from these autoimmune disorders including, but not limited to: oral ulcers, dysphagia, gastroesophageal reflux disease, abdominal pain, constipation, diarrhea, fecal incontinence, pseudo-obstruction, perforation and gastrointestinal bleeding. Clinical workup should be initiated by the patient's subjective complaints. In this review, we analyze the effects of autoimmune diseases on the gastrointestinal tract.
Yes, it isn't big on details. I liked a few things about it though. One thing was that, in the case studies, treatment for autoantibodies seemed to bring about quite quick and significant improvements in people who were in desperate situations and had a wide range of symptoms.Thanks for the link Hutan, not as informative as I hoped though.
Maybe they are just markers, but if they are markers for an autoimmune condition, then perhaps treatments like rituximab can help?Jonathon Edwards posted somewhere in another discussion about autoantibodies that the adrenergic and muscarinic AChR antibodies found in that study were probably just a marker of an autoimmune condition rather than a causative factor.
Thanks for all this. One doctor suggested the Cunningham panel a month ago.
But she's just out of the hospital after the 6 th Hemmorhage. And they are so cheap with the blood here,only gave her one unit when she needed more, at least one more minimum.
We are so exhausted chasing this test that test this doctor that doctor this supplement that supplement, and nothing helping just getting poorer.
I am so very sorry @perrier for your daughter's situation, it sounds just horrendous. I concur with our canadian health care system, it is just horrible. Here in BC my dr says there is a 2 years wait to see a GI specialist. 2 years! Unless you show up in emergency with an appropriately urgent condition, there is no possibility to see a GI.1) Thanks ever so much for your time and your concern. Thank you. I'm grateful for the confirmation that GI haemorrhage has nothing to do with ME.
2) The hydrocortisone was given to my daughter by a very well known CFS doctor in the USA who followed the work of Dr Jeffries ( the later arguing for the safety of hydrocortisone use). My daughter was flat on her back for two years unable to sit or stand. The doctor whom we saw ( after running around Canada and not getting anywhere) suggested that Cortef ( in her case compounded Hydrocortisone) would help.
Now I realize that the proper testing was not done, though morning cortisol was tested on a number of occasions. So she started with 5 mg and it kept going up as she got sicker. We saw several well known CFS doctors in the USA and without exception they kept reassuring me that hydrocortisone was used by ME patients because they had low cortisol.
It was when the haemorrhages began, and endocrinologists began to visit her bedside that we began questioning what the CFS doctors had prescribed.
Even at the Paracelsus clinic in Switzerland they suggested she needed hydrocortisone and bumped it up 20 mg. The saliva tests showed very abnormal cortisol readings.
Now does this mean that her adrenals have shut down somewhat? Obviously, the proper testing would need to be done.
But she's been bleeding so regularly and in the past 8 months, she has had 3 haemorrhages requiring multiple transfusions, as well as undergoing many tests, the hydrocortisone was increased in the hospital, to a stress dose for procedures. And though she is trying to wean it down, the process gets sabotaged by the next bleed.
( These episodes require a hospital stay from 8- 14 days generally.)
I have repeatedly asked physicians if the hydrocortisone could have caused these bleeds. Your comment suggests to me that it might be urgent to get to an endocrinologist and see if she really needs this hydrocortisone. I would prefer if she got off it.
3) The testing she has had is several colonoscopies, endoscopes, two balloon endoscopes: one from above one from below,CT scan, Meckels scan, 2 angiographies, and 3 video capsule tests. Of these only the video capsule test done in October of 2015 showed bleeding in the small bowel. By the time the hospital got around to do the angiography 3 days passed after the video capsule,despite my pleas to speed it up, as she bleeds intermittently during an episode.
Of the 6 bleeds two occurred in Canada, one in the UK, and 3 in the USA. The care was best in the USA, because we were in Miami or Tampa. They had the most resources. The care in Canada is so frightening,even though we live in a very large metropolis. The doctor told me during this last bleed that they didn't have access to a video capsule test! He told me resources go to cancer, primarily. They suggested that based on the video capsule of Oct 2015 done in the USA exploratory surgery was warranted. We refused because she is do weak, she is unable to walk,and is so underweight and frail. But in the follow up appointment we took the referral for the surgeon and will see what he says.
We sent the video capsule CD to the mayo clinic and the doctor suggested it might be a Gist, whereas the doctor in Tampa and here suggested AVM.
4) yes, it's a university based hospital but our system is " broken" to quote a GP I spoke with a week ago. It's virtually impossible to get to and to have time with the specialist or to get proper care in the hospital. I'd give anything to be in the USA, though I've heard Americans express the view that our Canadian system is better because it is free. Here twice now, in Toronto and in Montreal they sent her home with melena stool! Then she started to haemorrhage required an ambulance and ended up in ICU. They did it again just over a week ago. They sent her home and two days later we returned and then they finally admitted her. It's the worst medical system I have encountered.
5) my daughter does not take antiinflammatories. But if you think the hydrocortisone could be doing this, there is an urgency to address this, and to wonder if there has been erosion in the gut by these drugs. But her bleeds are profuse,with the hemoglobin having gone down to 6 in one episode. I don't know if that kind of bleeding presents with steroid use.
6) I mention you, Dr Edwards, in the family regularly. I wish I could bring my daughter, now an adult, to see you. Her life has been utterly destroyed by this savage disease.
7) I thank you for your comments and will try to set something up with an endocrinologist.
Thank you.