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Familial Hypercholesterolemia?
Posted: Tue Dec 04, 2018 7:44 am
by cylon75
Hi,
I am a type 1 diabetic and not very good controlled but also not very very bad. My total cholesterol is quite high 8,2mm/l , HDL 1,71 mm/l and LDL 6,7 mm/l. This has been very high as long a I can remember until I used statins. Even before I was a diabetic.
First I had simvastatin but had a lot of muscle cramps. Then I had Ezetrol for years. Did not have a lot of trouble with this but slowly my cholesterol did rise again and I got a new doctor.
He wants to lower my risks because my cholesterol is way too high. I have had several statins from my new doctor but again I cannot tolerate them very well and they do not lower my cholesterol enough for a "diabetic". He wants it crazy low. I also had a elevated blood pressure around 138/92.
Looking for alternatives I discovered this site and thanks to Vit C it seems my blood pressure is dropping to around 123/82 for several measurements in the last few weeks.
My doctor makes me scared because in my family several people have died early on my fathers side and now wants to check me for FH. My father also had a massive hearth attack and he was the most healthy one in the family. Fortunately he survived.
What do you think about FH?
Depending on the result he wants me on injections. I think he means PCSK9 inhibitors. That doesn't sound very good. Are they even worse than statins?
I have been taking 12g Vit C for several months now and 2g Lysine and 2g Proline per day. Cholesterol did not drop a bit, only my bloodpressure dropped. Don't know if it's too early too tell. Also taking the recommended Vit A, Super B complex, Vit D, Alpha Lipoic Acid, Q10 and Vit E among others.
I think i have to up my Lysine intake to 6g but any tips how to increase Lysine intake without taking so many 500mg pills? I already have trouble with taking so much Vit C using a water bottle. It starts to irritate my stomach and throat.
Maybe I have to try liposomal Vit C because my insulin competes with the Vit C and to increase Vit C intake without having the stomach and bowel issues? It is too expensive to buy so I have to make my own.
Any tips?
Does Insulin really increase cholesterol levels?
Thanks!
Re: Familial Hypercholesterolemia?
Posted: Tue Dec 04, 2018 9:45 am
by pamojja
cylon75 wrote:Does Insulin really increase cholesterol levels?
It definitely increases calcification. Do you have any experiences in lifestyle-interventions (low-carb, excersise, herbals..) to get it at least a bid down?
I think i have to up my Lysine intake to 6g but any tips how to increase Lysine intake without taking so many 500mg pills? I already have trouble with taking so much Vit C using a water bottle. It starts to irritate my stomach and throat.
Don't forget a add good vitamin K2 product. If ascorbic acid powder irritates, start to add some bicarbonates (sodium or potassium) to reduce the acidity. Lysine in high doses is best taken as bulk powders:
https://purebulk.com/l-lysine-hcl-powder/https://www.bulkpowders.co.uk/l-lysine.html
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 2:00 am
by cylon75
I have tried many options.
Low carb doesn't work, too many hypo's.
I am trying to eat medium carb like 100-150 carbs a day.
I do not use a lot of insulin, about 25-33 units a day, somewhat less than average for a normal person.
I use openaps to control my sugar levels but mostly the levels are driven by outside factors like temperature. Insulin doesn't seem to work for a while until the temperature stabilizes. Often I need less insulin in the cold than in warm weather which normally is the other way around. Changes in the weather destabilizes my glucose values the most. It is either very high or very low for longer periods until the weather is the same for a few days. Hydration is also very important.
I went to several dietetics apart from the one in the hospital but mostly they get scared after seeing what it does to my sugar levels, getting a lot of hypo's and gain weight very fast. Normally this results in going back to my original food which isn't that bad but relatively high in carbs like bread and potato's. Carbs help when I want to do some exercise, without it my exercise is very short lived. And I turn my pump basal setting to 33% of normal 2 hours before the exercise.
Still going to a orthomolecular doctor and I do take K2.
I do walk a lot ( 1,5 - 2 hours a day) which is fine but high intensity activities always result in dropping my glucose levels very rapidly even when my pump cannot go any lower before it thinks my tube is blocked.
My cholesterol only dropped a little with high dosage statins or a diet for very obese persons but resulted in dropping 15Kg in 4 weeks. This diet was wrongly described (for obese type 2) when I was first diagnosed (I am type 1 and not obese).
Can I mix the l-lysine in my water bottle with Vit C?
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 8:11 am
by pamojja
cylon75 wrote:I have tried many options.
Did you try high-fat (meaning only healthy fats)?
cylon75 wrote:Can I mix the l-lysine in my water bottle with Vit C?
One can. Though the half-life of ascorbic acid is only half an hour. Therefore after half an hour you're already only getting half of what you put in, a quarter after an hour. Therefore I always mix ascorbic acid fresh in a glass of water and drink it all at once. And repeat later.
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 8:31 am
by ofonorow
Minor correction pamojja, the half-life in the human body is apparently 30 minutes, however, in a drink, according to Sherry Lewin and her 1976 book on vitamin C, the half life of vitamin C in solution is about 4 hours, but then it stabilize. See:
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 8:52 am
by ofonorow
cylon75 wrote:Hi,
I am a type 1 diabetic and not very good controlled but also not very very bad. My total cholesterol is quite high 8,2mm/l , HDL 1,71 mm/l and LDL 6,7 mm/l. This has been very high as long a I can remember until I used statins. Even before I was a diabetic.
.
.
.
Your research and knowledge is very thorough, (as it is with most Type 1 diabetics I know.) Glad you found about about Pauling's therapy, and I applaud your protocol.
Maybe you can help us? We recently had a report of elevated blood sugar in another Type 1 diabetic. This person found that adding proline (to vitamin C and lysine) substantially raised their blood sugars. If you have or gain any experience with proline, please share. Thank you.
I wasn't going to mention this until after I did a two-week fast, but I have started a fast. I have watched, and rewatched the documentary THE SCIENCE OF FASTING... https://youtu.be/t1b08X-GvRs (Which is enlightening, and ends with a bombshell - the discovery that fasting not only compliments chemotherapy, but can be a strong anti=-cancer therapy without chemo.)
My strategy is to start with a 12 day fast. According to the documentary, glucose levels go to zero in 2 days. I will be monitoring mu sugar levels, but if all goes as expected, I plan to eliminate all (or most) of my own insulin (40-50 units of long term, and 15-20 units of short term). The research reports that there is a regular "acidosis crisis" around days 2 and 3. I may add some extra sodium ascorbate to counter this phase. Which brings up the point that while I will only be drinking, mostly water, I will take most of my regular supplements, especially vitamin C.
According to the documentary, the body only cannibalizes 4% of our protein during a fast (while using 96% of stored fats). It also claims that the brain "must have glucose" but that ketone bodies are an alternate fuel?? With the new found knowledge that vitamin B5 promotes efficient lipid burning (and avoids ketosis) it will be interesting to see what happens, as I plan to try and take the 10 grams of vitamin B5 during the fast.
I can always start eating if there is a problem. (The B5 experiments showed no weakness, hunger or ketosis during a 1000 calorie per day diet.)
The Russian and German research and clinical/empirical experience shows that most people who fast "reset" their numbers to what is generally considered healthy (especially cholesterol, etc.)
My primary motivation is to see how much I can reduce my own hydrocortisone requirement during the fast.
I am not recommending that you try the fast at this time, but that documentary with previously unknown knowledge about Russian research is worth watching.
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 12:23 pm
by Johnwen
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 2:12 pm
by pamojja
Thanks for correcting me. Learning never ends.
ofonorow wrote:I wasn't going to mention this until after I did a two-week fast, but I have started a fast. I have watched, and rewatched the documentary THE SCIENCE OF FASTING... https://youtu.be/t1b08X-GvRs (Which is enlightening, and ends with a bombshell - the discovery that fasting not only compliments chemotherapy, but can be a strong anti=-cancer therapy without chemo.)
My strategy is to start with a 12 day fast. According to the documentary, glucose levels go to zero in 2 days.
When I was 21 I did a 21 days water fast (funny coincidence), which went just fine without problems. Though I didn't monitored labs at that time.
Therefore when I was diagnosed PAD 10 years ago I tried to water-fast again, this time with monitoring, for 1 week. A post I made that time on an other forum:
I'm 6 days into a tea fast and my glucose isn't getting much better:
2. day - 83
3. day - 72
4. day - 100
5. day - 65 (at last..so I thought)
6. day - 101
What could be the reason for such glucose reading while fasting for days?
After that real hell broke loose, with consistent fasting glucose readings of 130 mg/dl for about a year after, the 1 week fast having definitely transposed me into diabetic regions. Still don't know how that happened.
Could have been that my liver got really excellent in gluconeogenesis, or after the fast a kind of refeeding-syndrome causing complete metabolic havoc. Still don't know, but since got great respect from what a fast can do in such a short time.
Nevertheless, now I'm too playing with the thought to try it once more..
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 11:08 pm
by Johnwen
Re: Familial Hypercholesterolemia?
Posted: Wed Dec 05, 2018 11:51 pm
by Johnwen
Re: Familial Hypercholesterolemia?
Posted: Thu Dec 06, 2018 6:23 am
by pamojja
Re: Familial Hypercholesterolemia?
Posted: Thu Dec 06, 2018 11:43 am
by Johnwen
Re: Familial Hypercholesterolemia?
Posted: Thu Dec 06, 2018 1:38 pm
by pamojja
Re: Familial Hypercholesterolemia?
Posted: Thu Dec 06, 2018 2:25 pm
by cylon75
Re: Familial Hypercholesterolemia?
Posted: Thu Dec 06, 2018 4:30 pm
by pamojja
cylon75 wrote:But is there some more information about FH? and the PKCS9 inhibitors?
Statins Given for 5 Years for Heart Disease Prevention (With Known Heart Disease)83 for mortality
In Summary, for those who took the statin for 5 years:
Benefits in NNT
1 in 83 were helped (life saved)
1 in 39 were helped (preventing non-fatal heart attack)
1 in 125 were helped (preventing stroke)
Harms in NNH
1 in 100 were harmed (develop diabetes*)
1 in 10 were harmed (muscle damage)
*The development of diabetes is one such unanticipated harm found in a recent large study and it seems likely therefore that this applies to the data above, although this is a best guess.
PKCS9 are new and therefore don't have any hard mortality data like statins. Note: above number needed to treat only applies to those already having had an heart attack, without any event that number needed to treat (NNT) turns astronomical.
So even if I already had an heart attack, and considering the much greater likelihood of not benefiting in respect to mortality (a 1 in a 83 chance), for me the decision would be very easy to refuse treatment with a statin. With absolutely no hard data for PKCS9 inhibitors the more so. If I indeed have familial hypercholesterolemia I would probably take a second look too. But not before that being definite.
But this is a highly personal decision based on one's own risk/benefit evaluation, and one's propensities to taking risks and gambling.
Found some more information about PKCS9 inhibitors to dive into on the cureality forum (formerly TrackYourPlaque):
https://www.cureality.com/forum/topics.aspx?id=20621https://www.cureality.com/Forum/topics.aspx?ID=18468https://www.cureality.com/forum/topics. ... 7&PAGE=102Note: this is a forum for member fees, however each of the first posts are visible for the public.
By the way, did you try high dose immediate release nicotinic acid? In my case and together with other interventions it improved my lipids in average 40% the last 10 year (HDL up 52%, LDL and Trigs down 33% and 34% respectively).