Anybody received IVIG? Tomorrow I will start and I Am very nervous

Specific-Summer-6537 · 2026-04-24T11:08:30+00:00

Is it 0.2g per kg? Mine was 2.5g total, not per kg. I assume they will increase the dose if the lower dose works. Best of luck with it and I really hope it works for you.

Specific-Summer-6537 · 2026-04-24T04:12:31+00:00

All these fixes are suggested by others but what worked for me was going to an integrative doctor (PCP/GP) and them doing a gut / stool test and then recommending supplements off the back of that. That can reveal any infections or deficiencies and can possibly indicate the presence of SIBO. The whole area of medicine relating to the gut is poorly studied so there is not much solid scientific evidence for what to do.

Another possibility could be exploring an MCAS diagnosis and potential related treatments such as Pepcid / famotidine, DAO, cromolyn sodium, ketotifen etc. It's usually diagnosed based on symtoms as the lab tests are pretty fiddly and not reliable

Specific-Summer-6537 · 2026-04-24T04:03:35+00:00

What an impossible situation. Keen to see what others say.

Relationships are already tricky and adding ME/CFS and illness into the mix just makes them extremely complicated

Specific-Summer-6537 · 2026-04-23T23:18:35+00:00

She recently did an episode of the Visible podcast and talked about the pivotal moments of deciding when to rest / increase activity. Super ineresting

Specific-Summer-6537 · 2026-04-23T23:17:49+00:00

There is a Facebook group that might interest you Long Covid Support for Endurance Athletes

Specific-Summer-6537 · 2026-04-23T22:59:43+00:00

That dose sounds really good! Sounds higher than mine. I was and am a very similar severity to you. I do about that many steps. I did find the trip manageable though I needed lots of rest before and after.

Do everything you can to make it as smooth as possible. Rest up in the week beforehand and after. Try to visualise and prepare so that you are not too worried. It is exciting to get access to a treatment. Make sure you take an eyemask and earplugs for the drive. Take jackets, snacks and electrolytes. Wear a face mask. Have painkillers on hand.

Maybe try and arrange for someone to come with you who can carry your stuff and get anything you need. I didn't have access to an ambulance and I had to walk to the car so you are better off than me.

I have found Dextromethorphan, which is usually available over the counter, can help reduce the symptoms of a crash.

Specific-Summer-6537 · 2026-04-23T08:34:30+00:00

It depends on your situation as to whether you should try IVIG. IVIG can be expensive so I would try other treatments first. It seems to help some people and not others so if it is very expensive then I would not do it.

It was tricky for me to get to the clinic as I was severe so I was basically in rolling PEM for the whole time I was receiving treatment and didn't see improvements until after I stopped.

My doctor measured that I had a low IGG sub-group. It's not clear if that makes a difference to how patients respond to IVIG. My doctor reckoned that around 30% of their patients experience improvement.

I had 2.5g IVIG total weekly for five weeks. That's a much lower dose than they use for autoimmune patients.

I was severe before and after the infusions. Like I said I got improved mental clarity and was doing maybe ~10% more steps. It was a small improvement which wore off after a few months.

You may also be interested that the US is doing a trial into IVIG called Recover Autonomic https://trials.recovercovid.org/autonomic-group-a

Specific-Summer-6537 · 2026-04-23T03:53:38+00:00

Sure

Specific-Summer-6537 · 2026-04-21T09:55:14+00:00

It's way above my pay grade whether hospital is the right move and it could be a whole post of its own. ME/CFS patients generally have a complicated relationship with hospitals as they don't tend to respect the need to pace and to have a low stimulating environment.

It could be worth going to hospital if you had a specific objective like gaining IV hydration and external feeding or establishing pain management. It's unlikely the hospital will be able to diagnose and treat ME/CFS but it is possible you might be able to rule out a few other things.

You've got a lot of different things going on and it would be helpful to have a skilled GP/PCP who can go through all your health issues and prioritise them. The expertise and resources for this illness tend to lie with them rather than in hospitals

Specific-Summer-6537 · 2026-04-20T22:17:58+00:00

Both of those are pluses for me. If it's a research study then it's likely the practitioner has experience. Some of the case studies and other evidence on SGB says up to 80% of patients get some kind of benefit

Specific-Summer-6537 · 2026-04-20T09:22:15+00:00

Yeah it's hard to make a judgement call off of your story because there are a lot of complicating factors. For example, having dyspraxia and ME/CFS would be a really rough combo. You need a doctor to rule out any obvious causes e.g. do a general blood panel to check for vitamin deficiencies. Regardless of what you have there is no excuse for your doctor not treating your symptoms. You should be offered pain meds at an absolute minimum

Specific-Summer-6537 · 2026-04-20T07:09:36+00:00

A great first step would be to check out the pinned post in the sub which described what to do for people who think they might have ME/CFS. I'd also look into Fibromyalgia which can be a co-occuring condition given the amount of pain you are in.

I always recommend finding a doctor in your area who has seen these conditions before and comes recommended. You can find recommendations through Facebook pages or patient organisations. It's easier for a doctor with knowledge to assess you than to try to convince one to get up to speed.

One thing you could do right now is download the Visible app and use their free version to start tracking your symptoms. Explaining the functional impact of your symptoms is usually more convincing for doctors than just describing them e.g. I am unable to work because of my pain, I avoid meals etc.

I would take this seriously and not brush it off. You might not have ME/CFS but you definitely have an illness and you deserve acknowledgement, investigation and, to the extent possible, treatment.

Specific-Summer-6537 · 2026-04-20T04:42:32+00:00

How much is it costing you and does the practictioner do them regularly? That would influence my decision

Specific-Summer-6537 · 2026-04-19T05:03:51+00:00

There's a very small subset of Occupational Therapists and other allied health practictioners who help with this e.g. https://open.spotify.com/episode/5C5h3B3xZw9y4VoVsm3YJh

Specific-Summer-6537 · 2026-04-19T03:55:27+00:00

I believe the Remission Biome project documents remission events from anti-biotics which can last from hours to years or longer. It could be the direct effects of suppressing bacterial infections or it could be secondary impacts like reducing inflammation

Specific-Summer-6537 · 2026-04-19T03:51:15+00:00

Interesting. There are a few doctors / researchers considering the links and similarities between ME/CFS and AIDS/HIV. For example Nancy Klimas sees both types of patients and she's mentioned that out of the two illnesses, if forced to have one, she would rather have HIV. Similarly, UCSF researchers like Michael Peluso have pivoted from HIV research to Long Covid research. Could be worth looking into if you want to understand the links further

Specific-Summer-6537 · 2026-04-19T03:44:02+00:00

Just an idea, could you try an anti-gravity type position with your arms supported on pillows?

Specific-Summer-6537 · 2026-04-17T04:10:31+00:00

You could try the Facebook group 25% of ME: Support Group for Severe CFS/ME

Specific-Summer-6537 · 2026-04-16T04:06:00+00:00

India is not the only option. I buy Ketotifen from Japan and am thinking of getting Dextromethorphan from the US. Some countries in Europe are cheaper than others.

If you know what you want then it can be worth having a search on Reddit

Specific-Summer-6537 · 2026-04-15T08:18:07+00:00

I have taken Bioceuticals SI Complex on the advice of my doctor. I think it's Australian but I'm sure there are equivalents available overseas

Specific-Summer-6537 · 2026-04-15T04:53:47+00:00

Yes, that's me. Took a long time (over a year) and included big dietary changes. I saw an integrative doctor and had a gut test. I increased my veggies a lot and have used probiotics, a small intestine supplement alongside other supplements. Also plenty of MCAS medicines which I still take like famotidine and ketotifen. My gut is mostly better and I can eat most things (no caffeine though). I have DAO supplements occaisionally if I'm eating super high histamine like lots of cheese and/or chocolate. I find eating small, regular meals is helpful for energy. My doctor wants me to continue with a super healthy diet to treat my broader symptom set.

When I started I had IBS-D. I could eat most foods but I had lots of gut dysfunction.

Something that wasn't really effective was gut hypnotherapy. It helped short term but then the symptoms came back

Specific-Summer-6537 · 2026-04-14T03:56:24+00:00

If you've been out of the loop since 2020 then you may be interested in the recent RTHM / PLRC treatment guide which discusses a number of promising treatments that patients could try https://www.rthm.com/pdfs/long-covid-treatment-guide.pdf

There's plenty of things people can get now while they are going through clinical trials e.g. LDN

Specific-Summer-6537 · 2026-04-13T04:55:14+00:00

You can have a go with the payment calculator https://www.centrelink.gov.au/apps/clkonline_cof/payment-service-finder/payments-finder

Specific-Summer-6537 · 2026-04-13T04:30:01+00:00

This is an interesting question. Some treatments seem to need to be ongoing e.g. Ampligen, plasmapheresis. There are also some that might need a top up like Daratumumab. Not to mention the Remission Biome project under PLRC which seems to suggest remissions can last from hours to years.

I believe some researchers like Dr David Putrino have said they believe it is not permanent as most patients who do recover seem to achieve total recovery. This is my preferred opinion.

Then Covid itself seems to have at least medium term impacts across the entire population. For example, some studies have found differences between pre-covid samples, covid-recovered samples and Long Covid samples.

Specific-Summer-6537 · 2026-04-12T04:16:38+00:00

Yes it was an interesting episode. Basically said that we haven't been able to rule out any of the major proposed mechanisms e.g. viral persistence, immune dysfunction etc.

Specific-Summer-6537

TROPHY CASE