REFEEDING SYNDROME - The clues to healing via induced deficiencies

[alicec]

re potential cell damage from radioactive tracer or CT radiation.

I don't have any special knowledge of this. In general, the method that provides the least radiation for the shortest time that is able to give the information needed is the thing to go for.

As far as I know, PET scans provide information that is not available from other scanning techniques, so you may not have much option here. Yes there is a small amount of risk but the risk of not having the scan is likely to be far greater.

 

[Athene*]

Thanks @Freddd And good luck with your own test results. Hypokalemia is a nasty thing. I have experienced that 'organised' response before and a couple of times it coincided with regular blood tests which showed low red cell count. It took about a week to two weeks to heal the tissue, and the next red cell count a few weeks later, after resting up more, was much improved.

I managed to get another consultant radiologist to consider my questions and I'll hear his response shortly. I pointed out that I'm making new cells all the time, so much so that I have hypokalemia and hypophosphatemia, and it's these new cells I'm worried about.

The other choice I was given was to have a high resolution CT scan of lungs and then, if no other suspicious areas show up on the lung, they can biopsy the nodule, and if malignant, remove it by minimally invasive surgery. At least that way I would avoid radioactive stuff getting into my entire system.

I'm 52 now. The radioactive tracer they use in PET is FDG - half life of 110 minutes. Does having low glutathione affect the elimination of the stuff, or is that anything to do with it?

 

[Athene*]

I don't have any special knowledge of this. In general, the method that provides the least radiation for the shortest time that is able to give the information needed is the thing to go for.

As far as I know, PET scans provide information that is not available from other scanning techniques, so you may not have much option here. Yes there is a small amount of risk but the risk of not having the scan is likely to be far greater.

Thanks @alicec The PET is a very revealing scan for sure and I would jump at the chance to have it if I was 'normal' otherwise.

I've just read over my pathology report again and noticed the words 'in keeping with' (i.e. The features are in keeping with a malignant etc etc). As far as I can gather from researching online this indicates that it's a hypothesis i.e. not definitive. The first lab (local hospital) had 'query cancer' after 'it favours a diagnosis of (rare sarcomas mentioned)...' I was told that these neoplasms are notoriously difficult to classify and the local pathologist wasn't certain. So the tissue was sent to a sarcoma expert in UK for second opinion. I had no idea until now that even that opinion has ambiguity in it.

Now I'm half considering having a (third!) opinion from Sloane Kettering or somewhere similar, but it's expensive and my guess is they'll probably agree with UK. Still, I should have been made aware of the implication of the terminology used by the UK pathologist.

At least the oncologists (three varieties so far...) all understand I can't have anti-folate chemotherapy (not terribly successful with this type of thing anyhow, nor is radiation post-surgery - which is when it was discovered to be 'malignant'). The lung cancer specialist told me that radiation treatment for breast cancer, for example, has been found to cause sarcoma and other secondary cancers in a percentage of people, about 8 years later, but scans aren't risky, though I'm not convinced about that. I can't remember the percentage of secondary cancers caused by radiation treatment but I think it depends on age when treatment given, as @Freddd mentions re scans.

They're saying one of the cutting-edge treatments might be my best bet, but I won't be given any treatment until they know the full story, so as you say I may not have much choice with PET scan, unless they find a malignancy in lung with a high-res scan and biopsy, in which case they would have to treat me for a metastasis, systemically. Of course it's possible to have the bad luck of having a separate, unrelated cancer in the lung. Or, as they say, it might be benign.

Interestingly, the first oncologist I saw is now using methylcobalamin and methylfolate for his patients who have difficulty healing surgical wounds. He mentioned methylfolate being used now along with some kinds of chemo (I've forgotten details). Luckily he's interested in this. He was really amazed at how fast I healed my surgical wound.

It's ironic, but I'm doing really well now since pushing on with the refeeding nutrients. And my elevated ferritin (250 in range of 13-150) dropped to 100 after surgery, then 65 last week. I was always worried about that elevation. I don't want it to drop too far though. All other iron markers are improving so it looks like my liver is releasing iron at last. I'm hoping that's a good sign.

I'll sign off now, but thanks again, and if you have any comments on anything at all above, they're always welcome.

 

[Freddd]

@Athene* ,

Well, I'm in the process of getting scheduled for abdominal CT scan. And my docs will need to know that the MeCbl/methylfolate is stopped so is my cell forming. I had a malignancy antibody test and it is positive with 95% probability. Now they are looking for it (them) with CT scan after two other tests pointing towards them before the antibody test.

 

[Athene*]

It sounds like you're in good hands, @Freddd Whatever it is, I hope they get it sorted early. Did the docs tell you to stop MeCbl/Methylfolate in order to stop cell forming? My docs haven't a clue about how scans might affect my cells. Even today the radiologist I had hoped would know more just said 'you'll be fine'.

How long will you stop MeCbl/Methylfolate for? Will you stop all the co-factors too?

 

[Freddd]

It sounds like you're in good hands, @Freddd Whatever it is, I hope they get it sorted early. Did the docs tell you to stop MeCbl/Methylfolate in order to stop cell forming? My docs haven't a clue about how scans might affect my cells. Even today the radiologist I had hoped would know more just said 'you'll be fine'.

How long will you stop MeCbl/Methylfolate for? Will you stop all the co-factors too?

Stop the deadlock quartet? It's the only thing holding my neurology together, holding subacute combined degeneration in check. It makes my immune system work. I imagine I will be talking with other docs after we find out a diagnosis. I have not heard anything at all about stopping my body from working again. I was in the middle of poly organ damage and progressing neurological demyelination last times I was without sufficient MeCbl etc.

 

[Athene*]

I'm very relieved to hear that @Freddd! I got a fright when you said
'And my docs will need to know that the MeCbl/methylfolate is stopped so is my cell forming.'

When you wrote that I though you meant the docs had told you to temporarily halt your MeCbl/methylfolate in order to have the CT scan while there were no new cells forming, or something like that! I'm glad I misunderstood that because it scared me to think what would happen to you if you did that. I hope your CT scan goes well.

One of the most frightening things in all this engagement with the medical system is that some docs don't realise the importance of the Mecbl/methylfolate and the devastation which would happen without it.

I worry that if I had an allergic reaction/anaphylactic shock or some other adverse event from some treatment or test and was unconscious or otherwise disabled, I would not be able to get my injections etc into me. The docs were fine with me self-injecting in hospital after surgery in June but I had to bring my own Mecbl with me. They don't stock it in this country.

Can I ask, if anything were to happen during a hospital procedure and I wasn't physically able to get my MeCbl/Methylfolate etc, how many days/weeks would it be before it would be too late i.e. I saw you wrote somewhere that if you stop the Deadlcok Quartet for too long then 'start up' would not happen again?

 

[Freddd]

I'm very relieved to hear that @Freddd! I got a fright when you said
'And my docs will need to know that the MeCbl/methylfolate is stopped so is my cell forming.'

When you wrote that I though you meant the docs had told you to temporarily halt your MeCbl/methylfolate in order to have the CT scan while there were no new cells forming, or something like that! I'm glad I misunderstood that because it scared me to think what would happen to you if you did that. I hope your CT scan goes well.

One of the most frightening things in all this engagement with the medical system is that some docs don't realise the importance of the Mecbl/methylfolate and the devastation which would happen without it.

I worry that if I had an allergic reaction/anaphylactic shock or some other adverse event from some treatment or test and was unconscious or otherwise disabled, I would not be able to get my injections etc into me. The docs were fine with me self-injecting in hospital after surgery in June but I had to bring my own Mecbl with me. They don't stock it in this country.

Can I ask, if anything were to happen during a hospital procedure and I wasn't physically able to get my MeCbl/Methylfolate etc, how many days/weeks would it be before it would be too late i.e. I saw you wrote somewhere that if you stop the Deadlock Quartet for too long then 'start up' would not happen again?

@Athene* ,

I think there are some things mixed together not intended that way. I have had discussions about this with my doctors for years, as MeCbl etc.

Cell failures start up on 2nd or third day since last MeCbl dose for me. However, folate start failing at higher and higher rates as the dose decreases. If I skip a day's methylfolate cell failure starts. A dose of glutathione stops MeCbl-methylfolate cell formation in 2 hours. In 2 weeks it is damaging CNS nerves. I will likely be talking to on oncologist within a week or so. I expect those to be difficult discussions. Methylfolate deficiency causes hyper responses in some ways and can cause autoimmune and allergic reactions. After stopping the glutathione, much of the damage healed up over a year or so but I had copper deficiency symptoms and those caused lots of damage.

 

[Athene*]

No problem @Freddd Bad luck about that glutathione experience. Hope you have good luck this time round. I chickened out of the PET scan and cancelled it, but I'm going to have to face up to it again soon.

If a person didn't manage to get hold of their Deadlock Quartet items for whatever reason, would they be able to achieve 'start up' again, let's say after a couple of weeks or even longer, if they began the Deadlock Quartet again? I may have misread something you once wrote about that.

 

[Freddd]

No problem @Freddd Bad luck about that glutathione experience. Hope you have good luck this time round. I chickened out of the PET scan and cancelled it, but I'm going to have to face up to it again soon.

If a person didn't manage to get hold of their Deadlock Quartet items for whatever reason, would they be able to achieve 'start up' again, let's say after a couple of weeks or even longer, if they began the Deadlock Quartet again? I may have misread something you once wrote about that.

@Athene,

After the glutathione trial I did get most things to start up but that was when the copper went deficient and they kept getting worse. My remark was about people who stop the healing over and over seeking out all the variations that doesn't cause startup. After a while they have succeeded of conquering all healing. I selected items for maximum effect. People who select items for no unpleasant startup and refeeding syndrome can usually prevent healing. Whatever they stop startup for each time eventually the startup is not vigorous.

 

[Athene*]

Thanks for clarifying that @Freddd

Let's say a person has selected items for maximum effect as you have done, has pushed through the unpleasant startup and refeeding and has been healing steadily for a couple of years, but then let's say they go on holiday for 3 weeks, leaving their injections and supplements behind by mistake. So they begin to get cell failures on second or third day and by the time they get home they're in a bad way. If they begin the injections and all the refeeding supplements again, will they achieve vigorous startup again, given they're prepared to go through any necessary unpleasantness, or will the startup not be as vigorous this time round?

 

[Kathevans]

given they're prepared to go through any necessary unpleasantness, or will the startup not be as vigorous this time round?

We are certainly prepared to go through all sorts of unpleasantness! We’re familiar with that place from not having done anything!

 

[Freddd]

Thanks for clarifying that @Freddd

Let's say a person has selected items for maximum effect as you have done, has pushed through the unpleasant startup and refeeding and has been healing steadily for a couple of years, but then let's say they go on holiday for 3 weeks, leaving their injections and supplements behind by mistake. So they begin to get cell failures on second or third day and by the time they get home they're in a bad way. If they begin the injections and all the refeeding supplements again, will they achieve vigorous startup again, given they're prepared to go through any necessary unpleasantness, or will the startup not be as vigorous this time round?

@Athene* ,
When they start up again after 3 weeks, it's going to be at a different place. Some things will take up about where they left off, others things will happen in a different order and possibly it could be a startup with trace minerals that are unrecognizable. in several years of healing you have healed some things and some of them may be finished. Generally most of the probable symptoms will be folate and when that is brought to effective levels, refeeding will start up and you may be missing some item unfamiliar.

My healing had been goin on fine, then I tried glutathione. Healing and cell making ended in hours. When I stopped the glutathione trial, I got startup again over several days but this time some things were not healing, symptoms I wasn;'t familiar with, and I had substantial copper deficiency symptoms before recognizing it.

 

[Athene*]

Thanks @Freddd This is good to know. Sorry for all the questions. I'm trying to arm myself to deal with onslaught of further invasive tests and hospitalisations and trying to keep the refeeding going as efficiently as possible. What you went through with copper sounds so dangerous and frightening, not to mention the glutathione experience and now the latest worrying results which you must be finding stressful. I know I am.

I have no copper deficiency symptoms as yet. Still at the stage of having methylfolate fails intermittently with PEM. Continuing to titrate Ado and LCF (huge potassium demand). I take 2mg copper daily with 22mg zinc. I may need more zinc.

I'm not sure whether to increase copper just to say on the safe side of a future deficiency?

For future reference, can you say which copper you take? I remember you began with Solgar chelated copper but didn't you switch to another more stomach friendly one?

 

[pamojja]

I take 2mg copper daily with 22mg zinc. I may need more zinc.

Just a personal perspective without having major refeeding symptoms: Was consistently at the low end of normal zinc in serum, mean for copper, therefore titrated zinc up to 60 mg/d, where headaches started. Found just an additional 1 mg/d of copper ceased the headache. However, years later copper in serum had shoot up higher than normal and zinc even below. Since then I dropped the additional copper again. Now in total 10 years later I'm at 70 mg/d of supplemental zinc, no additional copper, but my serum levels still are where they been in the beginning.

Seems to be a very delicate and individual balancing act. At least do test for serum zinc and copper, if supplementing.

 

[sb4]

@pamojja Isn't B6 and magnesium important for zinc utilization?

 

[pamojja]

Isn't B6 and magnesium important for zinc utilization?

Not that I didn't take seemingly enough in that time-period - about 1.6 g/d of elemental Mg and 170 mg/d of B6 - with high B6 blood levels. Also not sure it's a problem with utilization or absorption and increased excretion. Despite did however suffer excruciating pain-full muscle-cramps from severe Mg-deficiency. Only Mg-sulfate IVs since November last year have ceased them completely. Still have to retest whole blood Mg. Just recent serum Zn and Cu tests still didn't change, yet.

 

[Kathevans]

Are serum tests for minerals the best? Or tests that show how cellular systems are working, like the NutrEval or Oat. I've heard that hair mineral analysis is not that reliable.

Any views?

 

[pamojja]

Each test has it's strength and weaknesses. Serum for electrolytes wont show a deficiency for a long time. In hair usually, but not always, is much better. For magnesium an RBC or whole blood is best. Iron for example a ferritin. Did hair, serum and whole blood zn and cu, and in this case all showed the same up and downs. Since this needs frequent retesting, haven't tried and compared to an much more expensive OAT yet.

 

[Kathevans]

Hi @Fredd,

I thought to post on this thread since it relates more specifically to refeeding, though it could be as applicable in the B-12 thread as well: https://forums.phoenixrising.me/ind...12-protocol-basics.10138/page-33#post-1010193

You have said that many things can drive one’s folate needs endlessly higher--too high lower Bs for example, or too high inositol. These have never seemed to be a problem for me in the past (which is not to say that now, after adding boron things haven’t changed), and I am currently taking 300mg riboflavin and 150 Benfotiamin and 200mg inositol.

My question is, have you seen any relationship between boron and folate? Or is it possible I am one of the lucky ones?!

After adding boron back in May at very tiny doses, my folate needs seemed to decrease. I say seemed, because after a couple of months of keeping the folate around 6000mcg/day, I was so exhausted and pain-ridden, suffering from muscular weakness etc, that the light bulb when on, and I immediately began to raise my folate levels, and the symptoms lessened. As I did this, it seemed that my boron needs increased as well (I did try holding the boron down and it seemed the ibs of refeeding worsened, but some of this is guess work, since I am facing this issue for the first time; it may be that I am simply continuing to reefed the boron as I may have been deficient for many years).

Amazingly, when I hit my previous high of 22-24000 mcg folate, where I used to get worsening ibs and wild whirring in my head, those symptoms seemed to no longer be applicable and I could ramp up on folate with only a lessening of the gut craziness that has occurred for the last couple of years that has led every evening to ibs, which would resolve and each day I’d start again…and that left me always thinking that something was missing...

So, as you see, I’m now up over 30,000mcg of folate per day (and have, thankfully ordered some MethylPro at higher doses/cap). Yesterday, for the first time in months I had no IBS whatsoever and a peaceful gut through the night. But today I am chasing supps again, enough folate, enough B-12 to handle the folate, enough boron—maybe.

I am going to try to hold the boron to about 6-7,000mg and see if the folate levels even off. But as I’ve said, if I find myself awake or with ibs, I’ll raise it again to see if it’s the culprit.

Here’s the acceleration: Wednesday October 17th, 2018 Total Folate 16000; Total Boron 2850mcg
Wednesday, October 24th, 2018 Total Folate 20800; Total Boron 6950mcg
Wednesday, October 31st, 2018 Total Folate 27200; Total Boron 7450mcg


Today I am on course to take higher folate and slightly lower Boron—if I can hold to these levels:
Friday, November 2, 2018 Total Folate 32000; Total Boron 6750mcg


To reiterate my question, which may have gotten lost in this ramble – have you seen too high boron drive folate levels higher and higher?

Or is my body just telling me to refeed what it wants?

Thank you so much, Freddd.

This refeeding and balancing is a tough one, and I know it’s totally individual, and without the breadcrumbs—I should say the wonderful loaves of bread—you’ve left behind, the rest of us would be clueless as to where we were going…(I'm looking for the Gingerbread House--without the witch!)

Kathleen