Seeking Advice in Recalibrating Treatment Strategy

Water

New Member
Hi all. I'm currently in a crashy period and have hit a wall finding an attentive, knowledgeable doctor who can help me recalibrate my treatment and lifestyle regimens in search of some relief, so I'm turning to you all! I hope you enjoy solving puzzles... ;)
I'm diagnosed with ME/CFS, POTS, Orthostatic Hypertension, Hypovolemia/Low Blood Volume and Hashimoto's thyroiditis (all illnesses followed a severe upper respiratory infection in 2013; diagnoses circa 2015). In 2016 I achieved full remission from all conditions except for the thyroiditis after becoming bedridden for eight months due to 'pushing through' my symptoms for two years characterized by misdiagnoses and medical malpractice. I achieved this remission thanks to monthly IVIG, extreme bedrest and frequent IV saline hydration, which in turn enabled me to exercise gradually and get back in shape, improving my physical conditioning.
Unsurprisingly I relapsed due to overexerting myself when I thought I was 'cured', and I have only seen mediocre improvement since, despite doubling my dosage and frequency of IVIG.
Nowadays I'm housebound with moderate orthostatic hypertension and POTS, and bad cumulative PEM. I'm on 100g IVIG every two weeks, natural dessicated thyroid medication, beta blockers (currently trying out corlanor after toporol made me gain too much weight), 1000mg Valtrex daily, 6mg LDN daily, VitD, Plaquenil 400mg daily, Prozac 60mg and occasional benzos for sleep. This -- according to specialists at Stanford -- is 'an excellent anti-viral and anti-inflammatory treatment protocol', which also addresses the POTS.
My current predicament:
I am currently having a flareup after driving far distances to get Hyperbaric Oxygen Therapy 6x/week for the past month.
A recent sleep study revealed hypersomnia (no shit!) the morning after the typical unrefreshing night's sleep, with excessive REM sleep during naps. Sleep is indeed terrible for me -- I wake up drenched in sweat feeling more PEM'd than before falling asleep. I only get better quality sleep when on Benzos, but I've become dependent on them before and therefore try to take them max twice a week. I tried going on Adderall/Vyvanse for the hypersomnia, but this made my hypertension worse and was only a band-aid which helped me push through the fatigue thereby making me crash more. It seems even though I am on an anti-inflammatory regimen of IVIG and plaquenil I am still highly inflamed -- some days you can see the inflammation in my face in the form of edema. Exercise wise, being in bed all day is making me fat and out of shape, which makes me out of breath, which surely isn't helping the POTS.
I have no idea what else to do beyond what I'm doing now. The hyperbaric oxygen was helping for a few hours following each treatment, but it was only a band-aid treatment that ended up hurting my due to overexerting. Stanford docs. say 'just rest and continue doing what you're doing' but surely this does not feel like enough.
I've been considering trying plasmapheresis. Also, some people mentioned I should look into Mast Cell Activation Disorder. Do you guys have any thoughts on these two directions, or treatment advice beyond them? Furthermore, how do I balance this intolerance for activity, even for being upright, with avoiding further deconditioning?
Thanks in advance.
 

Remy

Administrator
Hi all. I'm currently in a crashy period and have hit a wall finding an attentive, knowledgeable doctor who can help me recalibrate my treatment and lifestyle regimens in search of some relief, so I'm turning to you all! I hope you enjoy solving puzzles... ;)
I'm diagnosed with ME/CFS, POTS, Orthostatic Hypertension, Hypovolemia/Low Blood Volume and Hashimoto's thyroiditis (all illnesses followed a severe upper respiratory infection in 2013; diagnoses circa 2015). In 2016 I achieved full remission from all conditions except for the thyroiditis after becoming bedridden for eight months due to 'pushing through' my symptoms for two years characterized by misdiagnoses and medical malpractice. I achieved this remission thanks to monthly IVIG, extreme bedrest and frequent IV saline hydration, which in turn enabled me to exercise gradually and get back in shape, improving my physical conditioning.
Unsurprisingly I relapsed due to overexerting myself when I thought I was 'cured', and I have only seen mediocre improvement since, despite doubling my dosage and frequency of IVIG.
Nowadays I'm housebound with moderate orthostatic hypertension and POTS, and bad cumulative PEM. I'm on 100g IVIG every two weeks, natural dessicated thyroid medication, beta blockers (currently trying out corlanor after toporol made me gain too much weight), 1000mg Valtrex daily, 6mg LDN daily, VitD, Plaquenil 400mg daily, Prozac 60mg and occasional benzos for sleep. This -- according to specialists at Stanford -- is 'an excellent anti-viral and anti-inflammatory treatment protocol', which also addresses the POTS.
My current predicament:
I am currently having a flareup after driving far distances to get Hyperbaric Oxygen Therapy 6x/week for the past month.
A recent sleep study revealed hypersomnia (no shit!) the morning after the typical unrefreshing night's sleep, with excessive REM sleep during naps. Sleep is indeed terrible for me -- I wake up drenched in sweat feeling more PEM'd than before falling asleep. I only get better quality sleep when on Benzos, but I've become dependent on them before and therefore try to take them max twice a week. I tried going on Adderall/Vyvanse for the hypersomnia, but this made my hypertension worse and was only a band-aid which helped me push through the fatigue thereby making me crash more. It seems even though I am on an anti-inflammatory regimen of IVIG and plaquenil I am still highly inflamed -- some days you can see the inflammation in my face in the form of edema. Exercise wise, being in bed all day is making me fat and out of shape, which makes me out of breath, which surely isn't helping the POTS.
I have no idea what else to do beyond what I'm doing now. The hyperbaric oxygen was helping for a few hours following each treatment, but it was only a band-aid treatment that ended up hurting my due to overexerting. Stanford docs. say 'just rest and continue doing what you're doing' but surely this does not feel like enough.
I've been considering trying plasmapheresis. Also, some people mentioned I should look into Mast Cell Activation Disorder. Do you guys have any thoughts on these two directions, or treatment advice beyond them? Furthermore, how do I balance this intolerance for activity, even for being upright, with avoiding further deconditioning?
Thanks in advance.
I wonder if that’s too much IVIG, 200 g/mo is a whopping dose and the body has to process it all. I feel wiped after IVIG myself. Have you considered going back down? Sometimes less can be more with this illness.

Maybe colchicine is something to consider for inflammation?
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top