LDN

[chuckles333]

Is anyone familiar with treatment using LDN? Is this stuff for real?

[Frank J. Perrotta]

Hello pureblueh2o,
This is a very old thread.
If you would like to start a new post you should go to the top of the page where you can find an orange button titled "Post a Question".

My HepC is undetectable after treatment but I am in terrible health from the meds and am just about to start LDN. My doc has researched it a lot (as well as contacted friends at Mayo Clinic - where they are using it for HepC P.I.S. patients) and found some good research that helps with inflammation.

As you know the issue is with getting it prescribed. I have a great pain doc who is in conference with my GP soooo hopefully they will work things out. If not (and if anyone is interested I have some links for prescribing docs as well as compounding pharmacies) I will get LDN and my doc will work with me. We will start very slow at 1.5mg and may go as high as 3mg. In my reading, as well as my docs, there is very little sides so little to lose.

Hope you find a way to get on a better path to health, f

[pureblueh2o]

Hello, first time ever commenting. I, myself sound so much like you back in 2009. Chronic HCV genotype 1, stage 3/4 chronic liver disease, 12 week non responder of interferon/ribavirin ( it almost killed me), last v. load 6 million. I am a 48 yr old white female .
           I  was going to start the ****** protocol but the institute said I need to go to the clinic and to not start from home, can't afford the clinic at this time( still sending all of my med records and bw to see what ****** doc has to say) so found LDN. My latest doctor will not give me a script yet, only been to him once, so I have acquired some on my own. At this time the only other supplement I am doing is milk thistle. I was taking a cocktail of about 12 other supplements, vitamins and herpes but was not seeming to help.   I am eating a 90% organ diet and just started juicing. I don't do yoga or even go for walks anymore, I use to at least be able to do that.  

I just wondering how your treatment and quality of life is now of days?

Just ordered the book by Stephen Buhner " Herps for hepatitis C and the Liver"

I would like to do the IV treatments but do not know if ill be able to find a doctor right away. I have not had the best luck with  finding a good doctor. Have not been able to find a allopathic doctor yet.

I am so ready to get my healing started, my liver and my quality of life is getting worse by the day.

                                                                                Thank you

[jerialice]

the only thing i can say is that most of us can't afford the healthy supplements and special care you are getting. i was never an AMA type and would gladly do some of that you are doing, (but i would combine that with some of the newer tx coming out that have no sides, short duration and in some cases 100% Und at EOT). Just waiting now on SVR to show up for those new options.

I'd love to do all you are doing while waiting- but its not in my economy. i imagine until real health care comes along we will be limited by insurance, wellness, location and many other factors.
i'd love a nice long month of TLC- everything hurts most of the time and i just grind along. from what i've heard. many people are excited about losing a lot of those symptoms after SVR. I do eat very healthy and do what i can- can't wait fro more!

[Willy50]

Mike H no longer posts here and so I doubt he will answer.

There are other LDN threads here which you can use the board search engine to find.  You could also more easily search his old posts.

I would also suggest doing other searches of the web.  There are some utubes on LDN as well.  

I have never seen evidence that it is harmful.  There is not a lot of long term large studies which might prove it to be beneficial.  If the did exist one would have to agree what measurements one would use, what endpoints would would ascribe to prove benefit.  One would have to assess the numbers of people, the numbers of years they treated and somehow assert that the people treating got better, or didn't get abs bad as fast as the control group.  I have seen no such trials.

It would seem to me that merely slowing progression would be a good or worthwhile thing, but all I have ever seen is anecdotal stories of this.  Even if one had a fibrosure or fibroscan many people here would tell you that you could not rely on those.  

The number of people of people who would treat w/ LDN and have before and after biopsies would be a pretty small number I would wager.  : /

Finally, LDN is a prescription drug.  Almost any pharmacist can formulate it for you.  A doctor would need to prescribe it however, at least in the U S of A.

willy

[daveg719]

I saw one of your post that said: The good thing is that it costs only $30 a month, without insurance

Please tell me where I can buy this LDN?
Dave G

[daveg719]

I saw one of your post that said: The good thing is that it costs only $30 a month, without insurance

Please tell me where I can buy this LDN?
Dave G

[mimic64]

If I have extreme ensaumnia and can not sleep at night will LDN still work even though I stay awake at night or does it work only when I am sleeping?

[CanaryParker]

I don't have any documentation but someone I know from a support group who did tx which did not work and she suffers from many problems from the tx itself and the hcv went in for her routine tests and also had a biopsy due to being severely tired, in pain and in general not well.
To see if liver histology has worsened, a biopsy was done and the one and only sample came back as having reversed by 2 stages.
The sample was taken from the same area that was done last biopsy.
She is not doing anything special except taking meds for the spinal degenaration and pain. Her diet is not all that health oriented..more convenience style.
in reality, there still isn't enough known and as it is being spoken and written about more...that each person is different and that therapies and treatments done individually based is the route to take.
Just as allopathic medicines do not always work for all, the same for 'alternatives'.
Just as some can be life threatening for some, some can be life savers.
It's choice and needs. So very individual.

And the algae spoken of is part of my diet. Good stuff and can tell the difference when I do not take it. Spirulina, blue green algae, barley, wheat grass juices  and broken cell wall chlorella also go into my health drinks/smoothies or taken in veg gel caps.
It's not a cure but excellant foods for ME that help to be nourished and so feel better.
These are farmed in clean waters and certified usda organic cultivated with strict standards.
They are not only nutritious but good for detoxing the body.
And as far as the PC supplement...it reads
''This category of liver damage is char-
acterized by extensive fibrosis, which effec-
tively stifles whole zones of the liver.  Some-
times aggressive inflammatory changes are
also present.  This stage can be reached as a
consequence of persistent alcohol intake, per-
sistent viral infection, or the unchecked toxic
effects of any of the many other agents that
can damage the liver.  Given the severity of
the structural and functional damage to the
liver at this stage, lesser benefits are to be ex-
pected from PC supplementation than at ear-
lier stages.''
So, it helped with viral infections too..what types?
Like Milk Thistle, medicinal mushrooms and other helpful agents well known today..it's not a cure...but numbers of docs suggest taking milk thistle while on tx...and it is standard with many with hcv.
If some things that are helpful for those of us who cannot do the 'soc', can't do it again or those who choose not too, why get defensive and out of kilter about 'alternatives' that are found to be helping?
No one on this thread is selling anything nor saying to others to not or to do anything.
It's individual..and an individual choice.

[cindyh113]

I couldn't have paid good money and gotten the education I just did in 30min. Thank you all! And its in writting!
I have brain fog and can't remember x@! (anything). The tx did a job on that but it was bad anyway.
Thank you all for ana-lillies! My own words.

[mikesimon]

I didn't see Hepatitis C mentioned - did I miss it?
I won't comment on the methodology except to say that I am accustomed to seeing a significantly greater degree of specificity when assessing liver architecture.
I am not the least bit impressed or persuaded but you probably knew that anyway.
I am finished with this "discussion".
Mike

[Trinity4]

You're entitled to equal amounts of air time too.  

No comment on the pond scum.

[Rockerforlife]

Watch this and let the fun begin....LOL

http://adfare03.adfare.com/ads/brian/bmi45.htm

[Trinity4]

Dating back to 1972 and they still haven't introduced it as part of SOC.  Where are the studies regarding reversal of fibrosis and damage specifically attributed to the hepc virus?

[mhudnall]

months, with favorable effects on the usual
enzyme indicators of liver damage.
In summary, the experiences from the
clinical trials discussed above concur with
findings from others36-40 to paint a clear pic-
ture of PC as an effective and safe nutrient for
liver damage of all degrees of severity.

[mhudnall]

Here's the next chapter:

Controlled Trials with PC Against
Severe Liver Damage

This category of liver damage is char-
acterized by extensive fibrosis, which effec-
tively stifles whole zones of the liver.  Some-
times aggressive inflammatory changes are
also present.  This stage can be reached as a
consequence of persistent alcohol intake, per-
sistent viral infection, or the unchecked toxic
effects of any of the many other agents that
can damage the liver.  Given the severity of
the structural and functional damage to the
liver at this stage, lesser benefits are to be ex-
pected from PC supplementation than at ear-
lier stages. Yet still PC proved beneficial.
Fassati and collaborators in 1981 in a
controlled trial conducted in Prague, Czecho-
slovakia, studied 61 subjects with moderately
severe to severe functional breakdown of the
liver.33  The degree of advanced liver damage
(extensive fibrosis, inflammation, elevated en-
zymes) was assessed by biopsy and by a wide
range of blood biochemical tests.  Thirty-four
(34) subjects were given fortified PC (900 mg
per day), and 27 subjects served as controls.
The trial ran for 4 months, with each patient
serving as their own control for statistical
analysis.
Biochemical re-testing conducted at
the end of the trial showed that except for the
bilirubin values, all the other biochemical in-
dicators were significantly improved (p<0.01).
These included the albumin/globulin ratio, al-
bumin, bromsulfalein (BSP) clearance, SGPT,
and SGOT. The number of subjects positive
for HBsAg in the blood moved from 8 of 34
to 3 of 34 in the PC group; that of the controls
moved from 7 of  27 to 6 of 27. The trend
apparent in the PC group was not statistically
significant due to the small numbers of
HBsAg-positive subjects in both groups from
the beginning of the trial. The investigators
commented that fortified PC was the only in-
tervention they were aware of that seemed to
bring down viral antigen levels, and they urged
further investigation of this possible benefit
with larger groups of subjects.
In 1991, Ilic and Begic-Janev con-
ducted a randomized, double-blind, placebo-
controlled trial.34  They recruited 50 subjects,
all positive for HBsAg (hepatitis B virus anti-
gen) who had extremely severe liver damage
as verified by biopsy and immunologic test-
ing.  The test group was administered 1350
mg of fortified PC, and the control group re-
ceived a placebo.  Both groups were followed
for 1 year, with periodic sampling for lab as-
sessments, then at the end of the 12 months
they were biopsied again.
After 12 months the subjects given PC
had experienced considerably greater benefit,
as assessed both from the structural biopsy
findings and from the lab findings (p <0.001).
Among the PC group, 20 of 25 were judged
good to moderately good, versus 6 of 25 be-
ing moderately improved in the placebo group.
Six of the 25 in the PC group also lost the
HBsAg viral antigen, versus only 3 of 25 for
the placebo group.  Such “seroconversion”
indicated marked clinical improvement for
these fortunate subjects.  A number of cell-
structural, biochemical, immunologic, and
hematologic parameters were significantly
improved in the PC group as compared with
the placebo group.  Improvement in the PC
group continued well past the end of the trial.
As a rule, researchers working with
such severely affected subjects obtained bet-
ter results by maintaining the subjects on com-
bined intravenous PC and oral supplementa-
tion until substantial improvement had begun.
Other trials with severe liver damage,
though not controlled, are worthy of note.
Wallnoefer and Hanusch in their pioneering
study administered PC both intravenously and
orally to 130 subjects with advanced, fibrotic
liver damage.7 Once the clinical indicators
began returning to normal, they switched to
purely oral administration at relatively low
intakes (450-700 mg), which was continued
for months to years as necessary.  PC produced
benefits for 17.5% of these subjects, as con-
firmed from normalized enzyme levels and
improved tissue structure on biopsy.  Using a
similar strategy, they achieved benefit for 35.3
percent of their subjects with chronic viral in-
fection of a kind that was positive for viral
antigen and has an aggressive tendency to
progress to severe liver damage.  Kuntz re-
ported in 1989 on 10 subjects to whom he gave
PC intravenously at 2,800 mg per day.3  Im-
provements were seen as early as the seventh
day, and at the end of the 28-day trial period 3
subjects showed “dramatic, life-saving” im-
provement, 2 had “increasingly rapid improve-
ment,” 2 had gradual improvement, 2 had no
change; and 1 of the 10 subjects had died.
Kalab and Cervinka worked with 30
subjects who had advanced liver damage for
which pharmaceutical treatments had failed.35
Orally administered fortified PC (1350 mg
daily) produced clinical improvement after 6

[mhudnall]

Sure, Mike no problem,

Alternative Medicine Review, Volume 1, Number 4, 1996

(PC stands for phosphatidylcholine)

This chapter is in regards to viral liver damage. I will also post the next chapter regarding severe liver damage;

Controlled Trials with PC in Viral
Liver Damage

A number of viruses can damage the
liver, by precipitating widespread inflamma-
tory breakdown which is further complicated
by overactivation of the immune system (au-
toimmune complications).  Once successfully
installed in the liver parenchyma, such viruses
can become chronic and very hard to dislodge.
Liver viruses (here simply called LV) can
wreak havoc with the liver’s functions.  Medi-
cal weapons for eliminating LV from the liver,
or for ameliorating their progressive damage,
have been limited.  Controlled clinical trials
have unequivocally established PC as safe and
reliable nutritional support for the liver against
the damage initiated by LV.
Mueting and collaborators in 1972
gave 16 subjects with chronic, aggressive LV
a relatively high intake of PC (2,050 mg per
day) for an average 8 months.26     A number
of clinical parameters improved, including
measures of the liver’s detoxification pathways
that metabolize amino acids and phenols, and
the authors concluded that PC was having a
“normalizing” effect on the liver as a whole.
From their large open study reported in 1973,
over the course of which some subjects re-
ceived PC for up to 5 years, Wallnoefer and
Hanusch noted a success rate for chronic, ag-
gressive LV infection of 35.3 percent.7
Hirayama, Yano and collaborators con-
ducted a double-blind trial in Japan in 1978,
using 124 subjects with various LV.27,28  They
gave PC (1350 mg per day) to a group of 58
subjects and placebo to 66 subjects, for twelve
weeks.  The PC group experienced significant
reductions in SGOT and SGPT levels when
compared with the placebo group; those with
higher enzyme values to begin with appeared
to benefit the most.  A subsequent blinded bi-
opsy assessment after 6 months confirmed that
in the PC subjects, the liver parenchymal tis-
sue had partially recovered from its earlier
damage; focal necrosis/cell death was lessened
in the PC group, and these subjects showed
signs of liver regeneration.
In 1981, Kosina and collaborators con-
ducted a sophisticated trial in Czechoslova-
kia that compared PC against drugs for the
management of viral-related liver inflamma-
tion.  They recruited 80 subjects with pre-
sumed acute LV infection (viruses hepatitis A
and hepatitis B), and divided them into four
groups of  20 subjects each.29 The first 2
groups were drawn from subjects whose bi-
lirubin levels were low (below 250 micro-
moles per liter) and were judged “moderately
serious.”  Subjects in Group I were adminis-
tered fortified PC (1350 mg) along with the
“standard treatment” that involved diet, rest,
vitamins, and glucose; Group II received the
standard treatment only.  Groups III and IV
were judged “serious,” with bilirubin levels
above 250 micromoles per liter.  Group III
received fortified PC and 580 mg daily of the
immunosuppressive drug prednisone (a drug
option for the suspected immune system
overactivation from LV); Group IV received
prednisone plus the standard treatment.
PC had a clearly favorable effect in this
trial.  Concerning the resolution of viral dam-
age, both Group I subjects (less severe) and
Group III (more severe) had their liver tests
return to normal markedly faster than the cor-
responding groups that did not receive PC.
Subjects who did not receive PC were more
likely to relapse (10% in the less severe, 25%
in the severe), while no relapses occurred in
the PC groups.  Upset stomach, jaundice, and
liver swelling, as well as the lab tests, all re-
solved faster in the groups treated with PC.
There was a trend towards lower occurrence
of the hepatitis B surface antigen (HBsAg) in
the PC groups as treatment progressed.
Jenkins and collaborators at King’s
College, London did a double-blind trial in
1982 on 30 subjects with progressing liverdamage from chronic LV (hepatitis B virus,
negative for HBsAg), as verified by biopsy.30
They randomly divided the subjects into two
groups of 15 each, kept them on the standard
immunosuppressive therapy (prednisolone or
azathioprine), then gave one group PC (2,300
mg per day) and the other placebo, for 1 year.
At the end of this period, the group given PC
had no clinical changes, while the placebo
(control) group had worsened.  Biopsies re-
vealed significant improvement of the liver
structure in the PC group, versus no improve-
ment for the controls.  More of the PC sub-
jects reported improved well-being than did
the controls (62% versus 43%).  In 3 of the 15
subjects given PC the viral infection was
judged to be inactive at the end of the trial,
while no subjects were judged inactive from
the placebo group.  Thus in this small con-
trolled trial, PC halted and partly reversed
chronic LV damage, improved overall well-
being, and “turned off” the virus in as many as
20% of the subjects.
In 1985, Visco and collaborators as-
sembled 60 subjects who were positive for
hepatitis B virus (assessed as presence of
HBsAg) and who had acute LV liver damage,
and divided them into two groups.31  Within
10 days from the onset of jaundice, on a
double-blind basis the subjects were started on
either fortified PC (1350 mg) or placebo cap-
sules.  Lab tests were conducted frequently,
and immune evaluations and clinical exams
were done at 30, 90, and 180 days (6 months,
end of trial).
By the 30-day mark, the group given
PC was significantly more improved than the
placebo group, with 50% being negative for
HBsAg versus 25% for the controls (p<0.05).
PC improved the rate of clearance of virus
antigen from the blood. The immune param-
eters were not significantly different, though
liver enzyme tests showed trends favoring PC.
In 1990, Hantak and collaborators in
Yugoslavia used PC to manage 24 subjects
with LV (hepatitis B virus).32  All the subjects
were chronically infected—they all had been
virus carriers for at least 6 months.  Seven had
viral antigens (HBeAg) which indicated a rela-
tively high degree of active infection.  The
other 17 subjects had no viral antigens and had
antibodies to the virus (anti-HBeAg), indicat-
ing that they were in a stage of relative viral
inactivity.  All subjects received  900 mg of
fortified PC per day.  After 4 months, the less
severely affected, antibody-positive subgroup
showed statistically significant improvements
in SGOT, SGPT, albumins, gamma-globulins,
and other biochemical measures.  The sub-
group that began the study with active virus
had statistically significant improvements in
immune measures, suggestive of clinical ben-
efit from PC.  The effects of PC in this small
and not well controlled trial were judged en-
couraging, and might have been more dramatic
had the daily intake been as high as in other
trials (a minimum 1350 mg of fortified PC,
rather than the 900 mg that was given).

[mikesimon]

I am still waiting for you to post a reputable study showing even just one HCV patient with documented improved histology who is not SVR.

[Rockerforlife]

Check out the stem enchance....I HAVE...ive been on it for 2 years before i started my current SOC

[Rockerforlife]

Some people have no choice but to use alternative choices....its either that or the grave...SOC TX just dont work for alot

[mhudnall]

Thanks everybody,

and good luck to you all.

I'll post my next labs and stir things up again next time. Communication is good!

Mike H

[Trinity4]

If those treating with SOC now or triple therapy in the future are fortunate enough to SVR the battle between virus verses liver is over.  They may face other hurdles but most assuredly they will not be facing transplant.   I suspect your battle will still be raging even with LDN therapy.

Good Luck in your pursuits.

Trinity

[Rockerforlife]

You speak words of wisdom.

[mhudnall]

Yeah, of course a biopsy is the definitive test - even though it is highly variable and possibly inconsistent.

And Trinity, if you want to see studies, just follow my links in my last post. Many people claim there is no science based solely on the fact that they refuse to look at what is there. Follow my links and then investigate it in PubMed and do some research for yourself.

And I would like to make a point regarding a fundamental understanding about science literature, however.

The drug approval process generates the studies that concern the medical community, but those studies are a small subset of the science studies being performed. Just because the system has been designed to ignore all other types of science, does not mean that important research is not being done that support a wide number of valid therapies.

Science means looking at the evidence, not ignoring it.

Mike H

[Trinity4]

"My doctor is the best on the planet, I believe. He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition fame.He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition."

I would not go to a podiatrist for a pap smear even though us ladies refer to the gyno as the toe doctor but you get my drift.

One of my doctors is a brilliant hepatologist in this country with published studies and does take the time for every one of his patients so your statement that all doctors are too busy and not very interested is not true.  It is important to be proactive in the care and treatment of hepc but I would much rather have the support from published studies and a renowned hepatologist than the simple testimony on a technique for lowering viral load which is not accepted or used within the hepc world wide medical community.
I'm keep paddling towards a cure....but no back paddling for me.