SpinachHands
Senior Member
- Messages
- 216
- Location
- United Kingdom
If you've seen my posts over the past year, you know we've been through hell (and still are) trying to find out what is wrong with my partner and how to treat it.
Brief backstory: they have ME and long COVID, became bedbound from this late 2023. Over 2024 their energy and PEM improved with intense rest. However new symptoms started midway through 2024 that were not present when their ME/LC was at its worst. Even as their ME improved and they began being able to do more, these symptoms progressively worsened. Literally nothing we have tried has made any dent in these symptoms, and we have tried so so much.
My partner has not been diagnosed with a specific autoimmune disorder, but their T Cells are low across the board, their white cell count continues to drop, and their doctor thinks this could be autoimmunity arising from long COVID. She theorises a combination of severe autonomic dysfunction and autoimmune activity are causing these symptoms. I wanted to see if these symptoms resonated with anyone else with an autoimmune disease.
In particular, the biggest challenge is that eating and taking any medicines worsens all of these symptoms massively. Almost immediately when they start eating ANYTHING, no matter the food/portion size, the following symptoms (that are always present) worsen: an immense pressure in their head, great difficulty moving, weakness, shortness of breath, blurry/double vision, immense cognitive dysfunction (difficulty thinking, concentrating, with memory), uncharacteristic mood changes, and now as it's getting worse they often will uncontrollably fall asleep. This can happen from even just a few stalks of asparagus so is not carb/blood sugar/meal size related either. Will even happen with drinking water.
The same happens with meds to a more intense extent, regardless of the medicine. They'll feel it benefitting what it's supposed to do, but any benefit is massively overshadowed by this. They've tried a billion MCAS meds, which helped their MCAS, but worsened this. Recently tried fludrocortisone and midodrine, same thing. Helped OI, worsened all these symptoms.
We've been down the route of treating it as MCAS, and ruled that out as causing this, same with gastro issues, structural spine/brain issues, nutrition, etc.
I'm hoping their low white cell and T-cell count is enough to get them started on some autoimmune treatment, even without a specific diagnosis. They are bedbound and can barely function. We have run hundreds of blood tests, done CTs, MRIs, and are awaiting results from a lumbar puncture. The only consistent abnormalities are low white cell count, recent low RBC, recent low lymphocytes, low T-Cells across CD3, CD4 & CD8, high ALP. Their BP and HR are all over the place, but apparently not consistent with traditional diagnostic criteria for a POTS diagnosis (despite blacking out when trying to sit up in a chair...). Their B12 and B1 were both high, which I've heard can happen with low blood volume, as it increases concentration. Thyroid is fine, just a mildly elevated T3, so is pituitary function apart from a mildly low cortisol. CRP and ESR normal, ANA negative. Plasma viscosity is on the low end, and recent prothrombin clotting time was high (long time).
Does anyone with autoimmune issues have this same problem with eating and taking meds to this level of debilitating severity?
Anyone with experience/knowledge of autoimmunity think we're on the right track, or is there anything we're missing? Am speaking to a rheumatologist for the first time next week, as well as the Dr mentioned above who is hoping to make IVIG available for her patients (it's not currently used "off-label" in the UK).
This has needed urgent attention for a year now, and still nothing has made any improvements.
Brief backstory: they have ME and long COVID, became bedbound from this late 2023. Over 2024 their energy and PEM improved with intense rest. However new symptoms started midway through 2024 that were not present when their ME/LC was at its worst. Even as their ME improved and they began being able to do more, these symptoms progressively worsened. Literally nothing we have tried has made any dent in these symptoms, and we have tried so so much.
My partner has not been diagnosed with a specific autoimmune disorder, but their T Cells are low across the board, their white cell count continues to drop, and their doctor thinks this could be autoimmunity arising from long COVID. She theorises a combination of severe autonomic dysfunction and autoimmune activity are causing these symptoms. I wanted to see if these symptoms resonated with anyone else with an autoimmune disease.
In particular, the biggest challenge is that eating and taking any medicines worsens all of these symptoms massively. Almost immediately when they start eating ANYTHING, no matter the food/portion size, the following symptoms (that are always present) worsen: an immense pressure in their head, great difficulty moving, weakness, shortness of breath, blurry/double vision, immense cognitive dysfunction (difficulty thinking, concentrating, with memory), uncharacteristic mood changes, and now as it's getting worse they often will uncontrollably fall asleep. This can happen from even just a few stalks of asparagus so is not carb/blood sugar/meal size related either. Will even happen with drinking water.
The same happens with meds to a more intense extent, regardless of the medicine. They'll feel it benefitting what it's supposed to do, but any benefit is massively overshadowed by this. They've tried a billion MCAS meds, which helped their MCAS, but worsened this. Recently tried fludrocortisone and midodrine, same thing. Helped OI, worsened all these symptoms.
We've been down the route of treating it as MCAS, and ruled that out as causing this, same with gastro issues, structural spine/brain issues, nutrition, etc.
I'm hoping their low white cell and T-cell count is enough to get them started on some autoimmune treatment, even without a specific diagnosis. They are bedbound and can barely function. We have run hundreds of blood tests, done CTs, MRIs, and are awaiting results from a lumbar puncture. The only consistent abnormalities are low white cell count, recent low RBC, recent low lymphocytes, low T-Cells across CD3, CD4 & CD8, high ALP. Their BP and HR are all over the place, but apparently not consistent with traditional diagnostic criteria for a POTS diagnosis (despite blacking out when trying to sit up in a chair...). Their B12 and B1 were both high, which I've heard can happen with low blood volume, as it increases concentration. Thyroid is fine, just a mildly elevated T3, so is pituitary function apart from a mildly low cortisol. CRP and ESR normal, ANA negative. Plasma viscosity is on the low end, and recent prothrombin clotting time was high (long time).
Does anyone with autoimmune issues have this same problem with eating and taking meds to this level of debilitating severity?
Anyone with experience/knowledge of autoimmunity think we're on the right track, or is there anything we're missing? Am speaking to a rheumatologist for the first time next week, as well as the Dr mentioned above who is hoping to make IVIG available for her patients (it's not currently used "off-label" in the UK).
This has needed urgent attention for a year now, and still nothing has made any improvements.