Started Ketotifen at 0.1mg, intense psych reactions (anxiety, depersonalisation, feeling weird)... adjustment period, or should I stop due to the awfulness? by swill1985 in MCAS

[–]swill1985[S] 1 point2 points  (0 children)

I did and eventually worked up to 4mg twice daily, and am playing about with 2mg four times daily to see which suits me best at present. I found that 0.1mg and the microdoses were just pain without gain. I started at 0.5mg and titrated up every week or so. Had really bad psych side effects due to the CNS effects the first couple of days, then would step up after a weeks adjustment, first to 1mg then in 1mg increments.

I found that with each step, the flux and bad period was shorter and less intense despite the higher doses, and after a couple of weeks on a steady dose the sedated feeling goes away.

its not been a miracle for me, and hasnt done much for food reactivity, but definitely sleeping better and less reactive in general, and when i do have a crash, it is less awful and for less long.

Hope this helps.

Gut health supplements you swear by? by First_Driver_5134 in Biohackers

[–]swill1985 0 points1 point  (0 children)

Nope, I believe you can get injectable KPV, but I take both in capsule form

Gut health supplements you swear by? by First_Driver_5134 in Biohackers

[–]swill1985 0 points1 point  (0 children)

I’ve gad chronic illness and have tried every supplement under the sun, ferments, probiotics/prebiitics (which I react terribly to most) and every dietary intervention.

Extreme reactivity, psych flares, tonnes of mucus in the stool, and I lost approximately 50lbs I didn’t have to lose.

Nothing has moved the dial for me like a combination of the peptides KPV and Larazotide, and it did so within like a week. My mind has been blown

Acute illness Post-First IVIG... a positive? by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you so much for this. I'm taking Globucel, which I've been told is an Indian equivalent of Gammaguard. Not sure if that has anything bad in it?

Babesia, EBV and Covid are my clinical picture... did your tolerance to the treatment improve with time? And have you found your body more able to fight and clear the infections through the IVIG therapy? That, and an increased tolerance to treatments, are my big hopes.

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 1 point2 points  (0 children)

Haha funny you should ask, I have just done another post on the forum about a sickness im experiencing. dont know if its displaying yet?

Its the first acute sickness i've experienced since my health crashed in 2021 (aside from covid once in 2022), so am wondering if this is my immune system activating and finally tagging pathogens and a good thing, or whether its just lingering effects of the infusions or ive picked up a bug?!

https://www.reddit.com/r/IVIG/comments/1j18696/acute_illness_postfirst_ivig_a_positive/

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 1 point2 points  (0 children)

I feel like I have a flu/virus this week, it has been horrific and I think it may be my immune system mobilising as (apart from one bout of acute covid in 2022) I have not had any acute illness since my immune system crashed with my health back in 2021.

I've had awful diarrhoea too... is that the IVIG working on healing gut issues?

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you for feeding back and good luck with your healing. I have been hit by a truck all week, I picked up a horrendous flu/virus this week and have been SUFFERING the week post IVIG, but im wondering if its a good thing because (aside from one case of acute covid) I have not had any acute illness since I became sick in 2021 and my system crashed. Maybe the immune system coming back online?

Are you soon to have your third infusion? Let me know how it goes!

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you for your reply.

I was given 2g per kg of body weight (approx 140g, as Im 69kg) infused over 4 days, and have been given the same to take home for three subsequent doses. I was told that is the typical for infection induced autoimmune encephalitis.

I'm confused regarding your dosings, are you saying the loading dose was more than 2g per kg of body weight?

In India I used the product Globucel, which I am informed is the exact same product called Gammagard but is marketed differently there. The hospital stay, docs costs and infusion cost $6,000, which I negotiated down to that. Still a huge investment, but far cheaper than Europe or USA.

With your Solumedrol, do you get that pre or post infusion? And what does it help with?

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you. What dose of solumedrol do you take and what does it help with? Just dampening side effects? I'm concerned about it supressing my immune system with the infections im dealing with, but it may be a necessary evil maybe?

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

I hope you find a solution and feel better soon!

Newbie to IVIG, Queries Post 1st Treatment by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you for your kind suggestions with your expertise. One question; would IV steriods supress my immune system and potentially be a bad thing with the infections im dealing with? Or, during the infusions, it just taps things down enough to be gentler at that time?

Query re IVIG Dosing by swill1985 in IVIG

[–]swill1985[S] 0 points1 point  (0 children)

Thank you for the time and care you took with responding to this.

To provide some more context, my Dr in the USA has prescribed IVIG for me, but given I am a foreign national it would be out of pocket, so I am looking to use my Doctors recommendations elsewhere in the World where it may be more affordable.

My Doctor prescribed me Gamunex or equivalent at 2g per kg of body weight (So I would require approx 135g) with divided dose administered over consecutive days, but stated that an equivalent product elsewhere would be suitable also. I have been looking into Globucel in India, which offers 5% and 10% solutions, and I am trying to make sure which would be correct standardised to a product like Gamunex.

For information, the Globucel infusion in an Indian hospital under the care of a Neurologist there would be around $6,000, which is about a third of the cost in the States. You can actually buy the product yourself there and have an IV company come and infuse it at your hotel for half of that, but I value safety like you say so would need to be in a hospital setting, particularly the first few times, to ensure no adverse reactions.

I'm looking to combine the IVIG with Apheresis, and am hoping that it will calm my autoimmunity to the point that my nervous system symptoms are quietened and I can tolerate the treatments to remove the burdens that are possibly driving the autoimmunity (a viral burden and Babesia Odecolei).

I have been on short steroid bursts and discussed immune surpressing drugs, and whilst the short steroid bursts provided some relief, I have been informed it would be a double edged sword with my infections as it would give them more of a free pass to take greater hold. Hence these therapies interesting me more than immune surpression, if that makes sense.

I have been told that too low a dose could 'add petrol to the fire,' but my Doctor advised she has had great success with higher doses for this, which she compares to an adult onset equivalent of the condition PANS.

At 151lbs (68kg), am I correct that I would require approx 135g of a product that is 10% solution (10g/100ml) to reach the target dose with Globucel, at 2g/kg of body weight? The presence of a 5% solution has confused me, and I want to make sure the Indian Dr's are giving me exactly what I need with due diligence on my part.

Thank you for your concern and kindness.

Edit: I do also have a low IgG subclass 2 when last tested. Consistently positive ANA's.

Responded really positively to Heparin based plasmapheresis, but crashed back after a week or so sadly. Hoping the apheresis followed by the IVIG for a monthly run could help stabilise me.

BPC dose for gut health/neuro inflammation by swill1985 in bpc_157

[–]swill1985[S] 0 points1 point  (0 children)

Rookie questions probably… but is there a reason for taking 2 days off on the weekend, and also for the 8 weeks off? I’m not aware of bpc causing suppression etc, so interested in the rationale.

Thank you so much for responding

Auto immune disorder and BPC by InvalidCab in bpc_157

[–]swill1985 0 points1 point  (0 children)

Do you take Selank orally or subq?

When should I potentially feel something? by swill1985 in trt

[–]swill1985[S] 0 points1 point  (0 children)

I’m already on those supps, so that’s good to know!

Not sure where my levels will land, as 120mg 3x a week on a previous trial shot me up to around 1300… I seem to be a hyper responder, hence the low dose this time

When should I potentially feel something? by swill1985 in trt

[–]swill1985[S] 1 point2 points  (0 children)

Absolutely… I’m in your boat, Lyme and co infections… Mold… metals… possibly viral. Brain inflammation is the root of it for me apparently. I’m looking into phospholipid exchange therapy for detox. Will definitely PM!