Phosphatidylcholine bad reaction, or detox reaction

Madmaxx said...
So I’ve tried phosphatidylcholine orally and now IV, I’m doing a PK protocol my Dr claims will get me to 90+% that’s working for many of his patients. I just can’t handle it though, it gives me awful insomnia, I can fall asleep but can’t get into deep sleep and then just totally run down, constipated.

He says I’m the only patient who’s reported this and says it should be tolerated well. So I can’t figure out if this is a bad reaction I’m having or if it’s just my body reacting to the detox. Just seems a little different than normal detox reactions I have so not sure if I should push on at a lower dose or if I’ll just make myself worse. Would love any feedback

Hi, Madmaxx, welcome to the forum.

I would be surprised if that one substance would get you to remission.

i have had reaction to taking a similar phospholipids orally in high doses - phosphatidylserine

people with lyme etc can become sensitive to just about anything - and one person can find things cause reactions that others find helpful

indeed it is difficult to tell if things that cause bad reactions initially - actually help in the long run.
like for instance antibiotics typically do. or if things that seem to make us feel worse are simply to be avoided.

i don't think there is a single answer - instead we have to figure out what works for us
the only way i have been able to do this is by doing very careful systematic trials where i hold all other variables stable and change one thing at a time for a few weeks - recording symptoms and in particular objective measures daily - like how much, sleep i am able to get and how much exercise am able to do.
after a few weeks there is usually a clear pattern of either slight improvements or non/worsening

of course, there is no point in doing this is the reactions are unmanageable - i which case i would suggest careful systematic trials with a much lower dose.

i have to say i am not sure about the claim that IV phospholipids are curative for Lyme disease - i think they may have some utility for helping with mitochondrial dysfunction after infections have been treated adequately - for some people - but i doubt they are effective as primary treatment.

and IV treatments are generally v expensive - so there is always a strong financial incentive acting on the doctors prescribing them - which i would have to weigh in my decision process.

all the best!

I’ve been through the PK protocol. It definitely caused a detox reaction, and we increased IV dose pretty fast and my liver enzymes went crazy. Doctor made me stop for 2 weeks.

I have other thoughts on the PK protocol but since OP only posted concern about detox, I will keep feedback to that.

Madmaxx said...

Now you have to tell me your other thoughts on PK haha I’m very invested financially and now physically/emotionally haha

What’s crazy for me is I did one IV of 750mg and was fine, then a week later did an IV of 1250mg and now it’s been 10 days and I still feel like hell, like knocked back to zero. It’s not like we’re doing any killing, could a detox be that heavy on me to take me from 2k steps/day to basically I can hardly move without feeling like crap. I’d like to follow through with the protocol which is supposed to go up to 2500mg per IV for 18 more IVs but I’m like this is absolutely impossible I’m hanging on by a thread as is. I’d go much slower if I continued or course but, still, will I be helping myself or poisoning myself?

It worries me the most that the doctor says he’s never seen this before in anyone, if he did see this in people it would give me comfort it’s a normal reaction, to me though it sounds abnormal now and like I shouldn’t be using phos.

I guess the question is does this sounds like a detox reaction: insomnia for a week (now getting better), waking up feeling like hit by a truck, brain fog, terribly exacerbated PEM and Me/cfs for 10 days now and hardly getting better. All because of one IV 10 days ago?

Thank you all so much

I believe it was 1500 mg that sent me into a two week hole. So I'd give yourself 2 weeks. Also if you're supplementing orally still - might want to pause.

It also depends why you're doing the PK protocol? Did you do the IGL & Neurolipid labs?

I believe I started the PK protocol before adequately finding/addressing infections. I don't know if one can ever be certain in all that either.

I found the process to be very $ expensive and rough on my veins.

After the protocol & upon redoing labs. I did have a lower free DNA. My IGL was clearer broadly speaking, although the two DNA adducts that we set out to clear were replaced by two others (and at a higher content).

I found moderate improvement in Chemical sensitivity - but could also attribute that to DNRS.

This was also the last straw of "chasing" mold for me.

I think the protocol is probably good for everyone on some level.. But I wouldn't have done it knowing what I know now. Given everyones situation is a bit different.. And I could see PC being useful in certain instances in my past and future. It just didn't move the needle for me at that time, as my issues were more complex than what PC was able to do for me.

WalkingbyFaith said...
loski,

Since you mentioned your experience with IV phosphatidylcholine as part of a mold protocol and you’re one of the few people who have been down the mold hole, I wanted to ask. Did you ever do IV ozone and ultraviolet blood irradiation? I know of two other people who had mold problems who found that very helpful. Since you’ve done a broad spectrum of treatment, I wondered if you ever did that and what your experience was.

Hi WBF,

I have not done either of those. Early on I briefly saw an integrative group who was big on the IV rotations (C, silver, ozone etc..). Silver made me herx and loose hair, I stopped going before trying ozone. ND at the time had me locked in on mold + my labs were negative for infections from MDL at the time so I thought that was more certain than it was. Shoemaker seemed to make the most sense given all that data.

To my understanding a lot of ozone improvements come from the ozone interacting with the mitochondria. I've read and heard mixed opinions on this from voices I trust - so I don't really have a set perspective. Some swear by the ability for it to almost act like an NK cell (balancing th1/th2 ratio), or as an autovaccine of sorts. But some also say your blood deactivates the ozone before it could even do that, or that you could have a metabolic condition which IV ozone could increase the risk of cancer (if I'm saying that correctly). Or that if the infections aren't actually in the blood stream does the ozone even reach them? Now we're back to improvements coming from increasing mitochondrial resiliency vs actually detoxing/fighting infections. Could the mitochondria working better naturally make the body better at detoxing or fighting infections?

I haven't given as much thought to UV blood treatment nor heard as much on it.

loski01 said...
I’ve been through the PK protocol. It definitely caused a detox reaction, and we increased IV dose pretty fast and my liver enzymes went crazy. Doctor made me stop for 2 weeks.

I have other thoughts on the PK protocol but since OP only posted concern about detox, I will keep feedback to that.

It’s great to talk to someone who has done the protocol, I did the IGL labs and my biggest issue was toxins, I was high on every single one, my dr. Said it’s the highest he’s ever seen. Everything else was pretty fine though.

How many sessions did you end up doing of pc? My doc wants me to do 18 more sessions of 2500mg, idk how that’ll ever be possible. One other thing worth noting, the IV nurse gave me the 1250mg of PC in only 20 minutes so I was really unwell, sweating and almost vomited, they gave me zofran though and I was fine in an hour. I know now it’s supposed to take 1-2 hours to administer. I don’t know if how fast you administer the pc makes a difference as far as symptoms you’re having 10 days later though.

So if you were me, would you try to keep going on this protocol? Obviously lower and slower. You know how it is, if you know something is helping you and it’s a herx or detox, even though you feel like crap it’s good knowing things will trend upward at some point. Right now though I just question if I’m poisoning myself and I’ll regret this down the road. Money aside and it’s ok if it doesn’t fully fix me, even if it helps me take a step forward it would be worth it, just don’t want to take a step back

Madmaxx said...


It’s great to talk to someone who has done the protocol, I did the IGL labs and my biggest issue was toxins, I was high on every single one, my dr. Said it’s the highest he’s ever seen. Everything else was pretty fine though.

How many sessions did you end up doing of pc? My doc wants me to do 18 more sessions of 2500mg, idk how that’ll ever be possible. One other thing worth noting, the IV nurse gave me the 1250mg of PC in only 20 minutes so I was really unwell, sweating and almost vomited, they gave me zofran though and I was fine in an hour. I know now it’s supposed to take 1-2 hours to administer. I don’t know if how fast you administer the pc makes a difference as far as symptoms you’re having 10 days later though.

So if you were me, would you try to keep going on this protocol? Obviously lower and slower. You know how it is, if you know something is helping you and it’s a herx or detox, even though you feel like crap it’s good knowing things will trend upward at some point. Right now though I just question if I’m poisoning myself and I’ll regret this down the road. Money aside and it’s ok if it doesn’t fully fix me, even if it helps me take a step forward it would be worth it, just don’t want to take a step back

I did around 12 I believe. The process was usually 2-3 hours. Butyrate IV before, 3amp pc push after main PC bag + glutathione push + b12 injection.

I'm hesitant to tell people what to do or not to do as each of our cases are very complex, and that internal compass has value.

It sounds like with your ozone experience - you're thinking infection issues have to be in check after doing so many? Maybe they are.. But hearing you say that improvement disappear rather quickly when not continuing ozone (I'd assume you see the improvement come back quickly also?). What may be happening here is the ozone is interacting with the mitochondria - and that's making your feel better. I'd be curious how you reacted to herbals at this point. (disclaimer I am not educated on ozone - this is my perspective from my own research).

If indeed there's still infections causing issues - the PK protocol will "improve the terrain" but it's a guessing game whether that's enough to move the needle on overall health. For me it was not.

emma blonde voyage said...
Hi Madmaxx, I don't have any advice for you re the phospholipids but I would love hear if the rectal ozone helps you as much as IV as I'm planning on starting ozone insufflations at home soon (have done them at a clinic previously but now have my own machine) but I've never done IV ozone so I don't have much to compare it to in terms of effectiveness

I’ll let you know soon! I’ll know in a few weeks. I think after my first insufflation I had a similar effect, not as strong but similar and mostly the relief was in my stomach but I’ll see as the ozone has really been a systemic build up effect for me.

What have you seen the insufflations help with? And also…if you pass gas after 30 minutes is that ok lol or does that mean your body didn’t absorb the ozone?

Madmaxx,

You mentioned you have mold. Are you still being exposed to the mold? If you are, that could very well be why the improvements are short lived.

emma blonde voyage said...
I totally get it, yes please keep us updated over time!

One of my main issues is ME/CFS - I found ozone mainly helpful with energy so my level of functioning and activity increased

The doctor who was doing the insufflations would do it until I felt like I needed the toilet (sorry if TMI), then she would say go to the toilet and empty out whatever it killed off in the gut

but what I didn't know at the time that I know now is that I have slow transit constipation so I couldn't empty my bowels after the ozone, this would lead to a lot of pain for days following the treatments because I couldn't get rid of what had been killed off out of my body, I also experienced gas for at least 24 hours after each treatment so I think this part is normal? But I might ask my friends who have been doing ozone insufflations at home for a long time to double check! I can report back

This time around when I start doing ozone myself at home, I will make sure I do the ozone around the same time I have bowel movements so I can empty out whatever it killed afterwards (I take medication for BM so this is how I can time them) sorry again if TMI!

Not too much TMI at all lol!!

I deal with constipation too and can only have a BM if I drink celery juice first thing in the morning, it’s a life saver for me.

It’s funny what you say about the ozone because I did have to go to the bathroom after which was nice haha but I had awful cramps for 30 minutes first while I tried to hold in all the ozone. I was just worried afterwards that I let the ozone out haha like was the ozone not absorbed if you pass gas after? I’m assuming what came out was the air that went in.

That’s amazing that it gives you energy, MECFS is my main issue too and that’s why I did the ozone IVs, it kept me going. And I’m talking I can only walk 2k steps per day and work like 50% from home so without it I’m much worse. I’m excited to see if this continues to give that same energy as the IVs, I read a lot online that says it should give similar systemic effects

Madmaxx said...
this house now that was perfect upon moving in has a leaking ceiling now so we basically assume we have to move again.

^^^^

That leaking ceiling is definitely causing mold exposure. That’s your biggest problem, IMHO.

Yes. It is very difficult to find a house that doesn’t have mold or water damage and keep it that way. Especially if you aren’t rich.

loski01 said...
Yes leaks need to be properly repaired as mentioned. Good catch WBF

I’d prioritize resources to an active leak before resuming PK IV’s.

So it’s sort of crazy I’m on day 14 since the PC IV and the symptoms keep progressing, I’m getting so hot all night especially my back and can’t sleep, lasts into the morning, bad SOB and waking up with bad heart burn and indigestion which is just so new and peculiar.

My Dr. Mentioned these detoxes can potentially mess with biofilms, same with Dmsa for heavy metals which also makes me feel like hell. Is it possible this is all a lyme or coinfection reaction? Maybe stirred things up or removed biofilms. My dr. Suggests getting a colonic to ease this or a prednisone burst for 4 days