For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

jjxx

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My bumpy road towards increasing acetylcholine, finally with success

Thanks @South, @Richard7 and @Gondwanaland for all your interest in my experiences. That motivated me a lot to find some time in between of doctor's appointments to write it all down. Sorry for the long delay: Badly enough, I suffered a new setback: choline inhibited my motility. What? It is supposed to improve that. So I did not feel it would be responsible to announce my experiences when all I have to offer is risk and suffering. It should at least work for a single person, that is, me. Now, read below: I am glad to say this hurdle is taken and I am now happy with my new self-treatment.

References will follow:
To most things below I have meanwhile collected some research and will post it here as soon as I have a little time. My newest happy research find: increasing acetylcholine may increase alpha-msh, which is the gut's natural defense against pathogenic biofilms. So instead of going to Kenny De Meirleir and swallowing his well-intended antibiotics for many months, one has this natural antibiotic which accomplishes what the pills are not so good at: demolish biofilms. This however may also explain the bad chills I had at high doses. So, increasing natural alpa-msh may be no better at avoiding die-offs. But much better in so far as that antibiotics ruin also the healthy parts of the gut flora and one cannot take them forever. I red posts by people geting out of CFS on Meirleir's treatment and then gliding into CFS again after stopping antibiotics for a while. I appreciate De Meirleir for what he brought in such as popularizing the connection between CFS and gut bacteria. Highly appreciated! But do you want to keep De Meirleir treating you forever...? :eek:
- ok, this was just an appetizer. I need to do more work on this. Concrete research with references will follow.

1. I measured my choline intake from food using cronometer.com. Choline data is sometimes missing, so the nutritional tables posted in this thread (thanks to @Richard7 !) do help to doubly verify. I found my intake to be badly low. -> indication to increase choline. This is a widespread issue:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782876/
"A recent analysis of data from NHANES 2003–2004 revealed that for older children, men, women and pregnant women, mean choline intakes are far below the AI. Ten percent or fewer had usual choline intakes at or above the AI"

2. I take AGP choline (= alpha GPC = Alpha-Glyceryl Phosphoryl Choline). I do not know if any other choline would do better or worse. This is the form Dr Diana Driscoll uses in Parasym Plus and it is said to resorb well.

3. I take it transdermally. Oral intake from food or pills can grow bad bacteria
I open the capsule and sprinkle the powder on skin just anywhere, drip a tiny amount of water and rub it in until it becomes a layer that feels greasy. Choline is eaten by bad gut bacteria. One won't notice the bad effects immediately but would damage oneself. I have experience with carnitine, which has this same effect. I damaged myself for a year or so before I understood where my small but slowly accumulating deteriorations came from... :(
And before taking AGP choline transdermally, I tried eating duck fat and brain, both high in choline. I ran into digestive issues compatible with feeding bad bugs. This was my first try and my first setback on this acetylcholine path... I was not well and hope my experiences save you suffering.
As a precautionary measure to avoid changes in skin microbiome, I cycle the skin area (left thigh, right thigh, left calf, ...).

4. I apply it some 0-30 min before protein-rich meals only:
Acetylcholine and serotonine antagonise each other. When I took it before salad meals (no tryptophane to produce serotonine) It didn't improve but inhibited upper gut motility (that "wonderful" stone-in-the-stomach feeling). Good motility needs serotonine and acetylcholine.
Regarding the 0-30 min before meals, I did not experiment with other times. At the beginning when I started choline transdermally, I clearly noticed the effect coming. It came fast. So I know that it resorbs fast. I want the choline to arrive with the tryptophan from food. It is possible that smearing it right after the meal would be even better...?
All this attention to tryptophan - choline balance may be a particular issue in me: My 5hiaa was almost nonexistent already before taking choline. Maybe this is why I need to be so careful, maybe other people do not need to care about this.

5. It was good to start ridiculously low:
I started at 75 mg/day (no effect), then was unresponsible to increase to 600 mg/day (wonderful, but bad side effects, see below. Lost much time as I had to stop completely), then found my current optimum dosage at 1x150 mg/day. Other people take 600 or 1200mg doses:
https://examine.com/supplements/alpha-gpc/
Recommended daily choline intakes: 550 for men, 425 for women:
https://www.nrv.gov.au/nutrients/choline

6. Having found a well tolerated dosage, I plan to increase it only very slowly:
I found the body needs quite a while to adjust. My current dosage of 1x150mg/day I keep since 2 weeks and will increase only if everything feels fully settled. Concretely, I have sometimes small feelings as if a flu would start. I will wait until these do not come any more and increase only then.

7. No other experiment / changes at the same time:
Choline effects so many systems that one would never know what causes what. Just think of all the effects below...

8. Look out for the following effects:
- Now, on my current optimum dosage (1x150mg/day), I have the following. All these effects are mild, nothing big: more relaxed, better digestion, better gastric emptying, heart pumping more forcefully in a pleasant way, improved blood flow (I have poor intestinal blood flow, I can tell from symptoms that it improved), my too low nightly blood pressure improved as measured by 24h BP, more energy, less chills and less feeling cold.
negative: sometimes a bit of a body feeling as if a flu would be approaching (no chills, no throat issues). Seems to be mostly gone meanwhile.
- In me, when I overdid (600mg/day): surprising, strong and very pleasant deep relaxed peace inside, but then really bad die-offs (exactly the same as when I take anything that kills intestinal bugs in me. Mostly chills such that I need three pullovers in hot summer!)

9. i do not take huperzine A
I had my cholinesterase measured. It was in the lower normal range, see a few posts above for the numbers. Adding to this, I achieved already a good effect with increasing choline. So I do not want to take any huperzine A. Taking choline is a dietary thing. Taking a cholinesterase inhibitor is a poison. Poison can be medicine and yes, people feel better. But there are reports of people who suffered bad damage fom huperzine A:
http://forums.phoenixrising.me/index.php?threads/acetylcholine-caused-crash.43104/
All the positive reviews on amazon.com for Parasym Plus are from a short-time intake! Hippocrates was a wise guy to say: First, cause no harm.
My guess is that cholinesterase inhibitors are for people with increased cholinesterase, or for cases where increasing choline is exhausted. Why not exhaust first the low-risk treatment before going to the risky one?
Thanks for sharing this, I am glad that I persist on digging more of your information on choline. My mom and I will start trying this tomorrow. How long did it take you to be able to handle 400-500g meat? I will be happy if I can handle 37g hydrolyzed whey protein without generating gas. But I will dream about that much meat tonight. Good night and thanks again!
 

Gondwanaland

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I will be happy if I can handle 37g hydrolyzed whey protein without generating gas.
I think taking whey might have been one of the causes of the thickening of the soft tissues around my right Greater Trochanter shown in an MRI. I suspect that to be uric acid deposition since taking magnesium malate apparently solubilized it and the pain there is now much more tolerable - but all the solubilized uric acid has been a nightmare :ill:
 

jjxx

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I think taking whey might have been one of the causes of the thickening of the soft tissues around my right Greater Trochanter shown in an MRI. I suspect that to be uric acid deposition since taking magnesium malate apparently solubilized it and the pain there is now much more tolerable - but all the solubilized uric acid has been a nightmare :ill:
If your uric acid production is overly active, I see the point of avoid certain A.A, in this case, whey protein. That's why "one's meat can be other's poison". Have you done food sensitivity test? I am curious if you have connect some deficiency with your uric acid overproduction? I have strong reaction to 3 foods/chemicals: egg, sulfite, and gelatin. Egg is sulfur rich too and I wonder if my sulfite production is overactive too? I know sulfite sensitivity is found in some of those folks with upregulated CBS, but not all. Thanks for reminding me of the relation of B6 defficiency to gelatin sensitivity. Together with some other signs that I investigated, most importantly, my improvement with B6 supplementation, it becomes clear that I have been B6 deficient.

By the way, have you done Zn supplementation or anybody else ? If so, can you give me some idea. If not, can you guide me where to find the most reliable infomation? My mom needs Zn badly. Thanks!
 

Gondwanaland

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I have strong reaction to 3 foods/chemicals: egg, sulfite, and gelatin. Egg is sulfur rich too and I wonder if my sulfite production is overactive too?
I haven't had tests done.
It seems that molybdenum is being diverted from its function in processing sulfites to the xanthine oxidase enzyme (increased uric acid production). I feel that manganese directs molybdenum to sulfite processing based on an experience I had with eating chickpeas. I don't know how chickpeas differ from soy, but I get a nice effect from chickpeas and feel horrible on soy (organic tofu). Soy is listed in the no-no gout lists, while chickpea isn't. So my anedocte is that after eating chickpeas for dinner, in the following morning I was chopping onions without tears!

Eggs still have vit A on top of sulfites. See in the enclosed paper a chart for xanthine oxidase synthesis.

Gelatin also usually contains sulfites... Gelatin/collagen make me very ill - feels like poison. Hydroxyproline is turned into oxalates endogenously if B6 is deficient or if its metabolism is impaired.
 

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Eastman

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Gondwanaland

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Eastman

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There are a ton of studies showing that if legumes and grains are excluded from the diet, meat isn't a problem...
Can I trouble you to provide links to those studies? Because the studies I have seen, if anything, point in the other direction. Apart from the previously-linked study, here are the other studies with their extracted conclusions:

Effect of Tofu (bean curd) ingestion and on uric acid metabolism in healthy and gouty subjects.

The effect of Tofu (bean curd) ingestion on uric acid metabolism was examined in 8 healthy and 10 gout subjects. Ingestion of Tofu increased plasma concentration of uric acid, together with increases in uric acid clearance and urinary excretion of uric acid. However, the increase in plasma concentration of uric acid was fairy small. Interestingly, no significant rise in the plasma, urinary and clearance of uric acid was observed in gout patients with uric acid clearance > 6.0 mL/min (lower normal limit). The results suggest that tofu is a preferable source of protein, especially in gout patients with uric acid clearance > 6.0 mL/min.
Purine-rich foods, dairy and protein intake, and the risk of gout in men.

Higher levels of meat and seafood consumption are associated with an increased risk of gout, whereas a higher level of consumption of dairy products is associated with a decreased risk. Moderate intake of purine-rich vegetables or protein is not associated with an increased risk of gout.
Purine-rich foods, protein intake, and the prevalence of hyperuricemia: The Shanghai Men’s Health Study

In conclusion, consumption of animal protein and seafood were associated with higher prevalence of hyperuricemia, while consumption of soy products was associated with lower prevalence of hyperuricemia among middle-aged Chinese men.
Soyfoods, hyperuricemia and gout: a review of the epidemiologic and clinical data.

Data from the five human intervention studies evaluated indicate soy protein does elevate serum uric levels, but in response to amounts comparable to Asian intake, the expected rise would almost certainly be clinically irrelevant. Although there is a need for long-term research, on the basis of the existing data there is no reason for individuals with gout or at risk of developing gout to avoid soyfoods.
Trends in hyperuricemia and gout prevalence: Nutrition and Health Survey in Taiwan from 1993-1996 to 2005-2008.

Frequency of consumption of lean meat, soy products and soymilk, milk, eggs, vegetables, carrots, mushrooms, fruit and coffee were negatively associated with hyperuricemia, whereas consumption of organ meats, bamboo shoots, and soft drinks were positively associated with hyperuricemia.
Purine-rich foods intake and recurrent gout attacks

In conclusion, our study findings suggest that acute purine intake increases the risk of recurrent gout attacks by almost five times among patients with gout. The impact from animal purine sources was substantially greater than that from plant purine sources. Avoiding or reducing purine-rich foods intake, especially of animal origin, may help reduce the risk of recurrent gout attacks.
 
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Gondwanaland

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Can I trouble you to provide links to those studies? Because the studies I have seen, if anything, point in the other direction. Apart from the previously-linked study, here are the other studies with their extracted conclusions:
I appreciate the links you posted, and don't want to sound impolite, but I don't have the energy to post links of my research since one of my main problems is organizing the info. I just can't properly document my research. But I pretty much follow the low carb research. Important things I remember reading is:
* fructose/glucose and uric acid share one transporter and the body prefers to dump fructose first 1, 2, 3 (@Lolinda )
* milk homogenization creates a lot of xanthine oxidase in the end product so this would favor increased uric acid production in the consumer's body. I think this is why defatted dairy is recommended, and in fact consuming white cheese proved to me to be very relieving.
 
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This is probably old news to you guys but I want to share this link Dr. D sent me. I seem to have better luck cutting my Alpha GPC dosage in half and only taking every other day along with B12 (I read somewhere on NCBI it's required to assist in the breakdown of choline).

As soon as I'm done breastfeeding I'm getting Parasym Plus. If it treats this it is worth every penny. I just have so much respect for Dr. D and how tirelessly she works to help us find answers. She's such a godsend!

https://chronicdiseasedigest.org
 

Lolinda

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As soon as I'm done breastfeeding I'm getting Parasym Plus. If it treats this it is worth every penny. I just have so much respect for Dr. D and how tirelessly she works to help us find answers. She's such a godsend!

https://chronicdiseasedigest.org
She definitively works tirelessly and I learned much from her work and appreciate it. But Parasym Plus is dangerous, specifically the acetylcholinesterase-inhibitor in it. Just search a bit, and you will find people here on PR who desperately try to recover from lasting damage induced by acetylcholineesterase-inhibitors. And all the tons of furiously positive reviews on Parasym Plus on Amazon are from people who used the product for a very short term. Having checked them at the time of opening this thread, I did not find a single (!) of those dozens of reviews being written from a long term user. So there is no indication of longterm safety. Adding to that, I would disregard all the positive reviews on Amazon alltogether: you will read at the end of those reviews a statement like "I received this and that for my honest and free opinion". Sounds good and very correct, or? But as a researcher I tell you that this is not necessarily so good. In fact, many scientific studies use a method to publish falsely positive results: select people with a positive initial response and positive attitude (or they select themselves by volunteering). And then, surprise, a positive outcome will result ... So, who guarantees us that these surprsingly many people who received sthg from D for their free opinions were not selected? Amazon is swamped by them. This is marketing. Honest negative experiences about damage you get here on PR.
(To say it very clearly, I absolutaly do not state anything that D did sthg wrong. Marketing is legit. But I am just so familiar how completely wrong impressions can arise even without any intentional falsification. Just imagine, there could be some self-selection effect, such that users with (chances for) positive outcomes are more likely to accept Dianas offer for compensation for some reason. And the best explanation for all the positive reviews could be: I hope and preassume that D did careful lab testing of her patients to select those for giving them Parasym Plus who really can and should take it)

But even more important than these academic nuances:
- if you need a reduced dosage of choline (as btw I did in the beginning) then god beware to potentiate the effect by acetylcholinesterase-inhibitors
- before even thinking of any product containing acetylcholinesterase-inhibitors, get tested. A doctor can test your acetylcholineesterase levels. If they are deficient it could make sense to prep them up. But probably they will be fine. And then do not mess up what works in.you...!
- check with a doc first. I mean, really do. This is toxic stuff: poisonous mushrooms and agricultural chemicals kill pests and people via acetylcholineesterase-inhibition!! (this will not happen with medical dosages, but still there is lasting damage in a very few peole. Dont be one of them.)
 
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Wow @Lolinda that is VERY good to know. Thank you!!!!

I just don't get it, I have every symptom of a choline deficiency but can hardly even handle 150 mg of Alpha GPC every other day. I was so excited when reading her book thinking this would be the answer to my prayers.

Were you able to develop a tolerance to choline and did it help you?

I also found this study, again I'm sure it's old news to most of you but it makes me wonder if choline is in fact that root of my problems and I just need to figure out how to break it down and utilize it correctly.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4415014/
 

Sidereal

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There is also the problem of vascular supersensitivity to acetylcholine in ME/CFS. So, whilst you may be deficient in choline, when you supplement it may make you feel a lot worse.

Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome.
Khan F, et al. Clin Physiol Funct Imaging. 2003.

Authors
Khan F1, Spence V, Kennedy G, Belch JJ.
Author information
  • 1Vascular Diseases Research Unit, University Department of Medicine, Ninewells Hospital and Medical School, Dundee, UK. f.khan@dundee.ac.uk
Citation
Clin Physiol Funct Imaging. 2003 Sep;23(5):282-5.

Abstract
Although the aetiology of chronic fatigue syndrome (CFS) is unknown, there have been a number of reports of blood flow abnormalities within the cerebral circulation and systemic blood pressure defects manifesting as orthostatic intolerance. Neither of these phenomena has been explained adequately, but recent reports have linked cerebral hypoperfusion to abnormalities in cholinergic metabolism. Our group has previously reported enhanced skin vasodilatation in response to cumulative doses of transdermally applied acetylcholine (ACh), implying an alteration of peripheral cholinergic function. To investigate this further, we studied the time course of ACh-induced vasodilatation following a single dose of ACh in 30 patients with CFS and 30 age- and gender-matched healthy control subjects. No differences in peak blood flow was seen between patients and controls, but the time taken for the ACh response to recover to baseline was significantly longer in the CFS patients than in control subjects. The time taken to decay to 75% of the peak response in patients and controls was 13.7 +/- 11.3 versus 8.9 +/- 3.7 min (P = 0.03), respectively, and time taken to decay to 50% of the peak response was 24.5 +/- 18.8 versus 15.1 +/- 8.9 min (P = 0.03), respectively. Prolongation of ACh-induced vasodilatation is suggestive of a disturbance to cholinergic pathways, perhaps within the vascular endothelium of patients with CFS, and might be related to some of the unusual vascular symptoms, such as hypotension and orthostatic intolerance, which are characteristic of the condition.

PMID
12950326 [PubMed - indexed for MEDLINE]
 
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Thank you for sharing! So it sounds like Dr Driscoll is on the right path but just isn't quite there yet with the cure. I know I'm heterozygous for PEMT mutation. I'm curious how many people with POSTS/CFS have mutations in these pathways.

I read another study somewhere linking B12 deficiency to difficulty properly using choline. I wonder if there's other co-factors we're missing.
 

xrayspex

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I don't tolerate supplements nor a lot of foods well anymore.......I have to go back and finish reading all of this thread, but am curious if people have any successes to report with trying to balance and supplement their deficit needs, ie if choline or anything else with foods....I am getting into making more smoothies and soups and experimenting what makes me feel better or worse
 
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jjxx

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I haven't had tests done.
It seems that molybdenum is being diverted from its function in processing sulfites to the xanthine oxidase enzyme (increased uric acid production). I feel that manganese directs molybdenum to sulfite processing based on an experience I had with eating chickpeas. I don't know how chickpeas differ from soy, but I get a nice effect from chickpeas and feel horrible on soy (organic tofu). Soy is listed in the no-no gout lists, while chickpea isn't. So my anedocte is that after eating chickpeas for dinner, in the following morning I was chopping onions without tears!

Eggs still have vit A on top of sulfites. See in the enclosed paper a chart for xanthine oxidase synthesis.

Gelatin also usually contains sulfites... Gelatin/collagen make me very ill - feels like poison. Hydroxyproline is turned into oxalates endogenously if B6 is deficient or if its metabolism is impaired.
It sounds like your reaction to sulfites is way much stronger. I would not even know I am reactive to sulfites without the test. Then, I am curious what do take and do to the condition?
 

Gondwanaland

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what do take and do to the condition?
I sincerely don't know... I think that what works for me is B6, molybdenum and manganese, but I don't supplement with these metals, just focus on food, and take a little B6 every now and then (less than 1 mg).
 

Lolinda

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Wow @Lolinda that is VERY good to know. Thank you!!!!

I just don't get it, I have every symptom of a choline deficiency but can hardly even handle 150 mg of Alpha GPC every other day. I was so excited when reading her book thinking this would be the answer to my prayers.

Were you able to develop a tolerance to choline and did it help you?

I also found this study, again I'm sure it's old news to most of you but it makes me wonder if choline is in fact that root of my problems and I just need to figure out how to break it down and utilize it correctly.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4415014/
Thanks @MissCB so much for posting this study! I didnt have this one so far. What I really like is posting some information to the benefit of others and getting such a gem in return :) Why gem? I had many doctors search for some mitochondriopathies in me, but never nothing was found in spite of everyone being convinced that I had issues. This paper may explain it. Also the paper presents how researchers measure choline deficiency: they test choline status in the POTS patients by phosphatidylcholine, choline and betaine in blood. I feel it is very useful to not only supplement but always test as well as this is possible if one still has deficiencies or not. Unfortunately, no single lab for any of these in Europe.... All we have is a phospholipides test by Synlab. Does anyone know a lab testing for choline? In the USA, there is the lymphocyte proliferation test by Spectracell. I really like the smart idea of that test, and it has choline in the panel. Do you know that test? They do not simply test what swims around in the blood - which reflects in the case of many nutrients just the intake of the last few days (dont know how choline behaves in this regard?). Spectracell tests how much is actually available in the cells in a tricky way: they make your wbc multiply and then see when they run out of which nutrient. So they know about the actual sufficiency of those nutrients in cells. Scientifically, this is called "lymphocyte proliferation test". Not exactly cheap, but I learned a lot.

A big sorry for my extremely belated reply (..... if even a simple thing like a heartfelt thank you comes so late, you can imagine how much is going on in my life currently...... :eek: :) )
 
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jjxx

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@Lolinda Hi Linda, I just wanted to thank you and let you know my protein/fat digestion has improved greatly after taking lecithin as you recommended. The positive effect can be felt within days, following with constant improvement. Currently, I can easily digest 100-200g protein/fat without any complaint. Before I started it, 37g hydrolyzed whey protein was enough to upset my whole system.
 

Lolinda

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I am glad it did good for you! Please let me know:
  • which lecithin product did you use? How much, how many times, oral/transdermal, diluted in what, let it sit on skin how long?
  • Did only your protein intake increase or your caloric intake too? Would you desire the latter or not?
  • Did you have any other changes, let that be nutrition habits, work efficiency, mood, psych, ... ? For example, I had a surprising effect that I call "happy stretching", see at the end of this post. It then got really strong since I have been smearing lecithin on my skin 4x prr day)

I am not only curious:), but your answer may help to find out what causes the effects. I am currently researching this here.

(I made often the experience that finding out how things work pays. Sometimes it helped me to find out about root causes of the issues in me, at other times it helped to simplify the treatment without losing effect, and, finally, it can be useful when needing to invent sthg new in case the effect wears off. Plenty of good reasons to meticulously write down which person does things in exactly which way and gets which effects...)
 
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