Hi Brian,
Congratulations on feeling better!Nice to hear!
I'm new to this, I have posted my specifics, look for HELP, I NEED
YOUR WISDOM, that's me.
I'm thinking about going on the antibotics, and my RA Dr. said there
were side effects from the anibiotics too, would you mind explaining
to me what blood creatinine levels are? Thank
Lissa
Thanks to all of you for sending such valuable information and the
words of encouragement. I'm overwelmed by your concern and kindness.
It's been a long 6 months and a loney 6 months as I am taking this
journey as a single women with no family remotely close by. My work
family doesn't understand the deepth of autoimmune diseases and keep
expecting me to show up my bubbly old self, all healed and better. It's
nice to be able to let my guard down a little with good folks who
understand that this journey for me is just beginning.
AGAIN, I SINCERELY THANK YOU ALL FOR YOUR SUPPORT!
I have another question. I have seen a lung specialist as they found 1
very large and 2 small nodules on my lungs. This Dr. told me that he
has never seen a case like mine in his 20+ yrs. He believes my RA
started in my lungs and is working its way out. I have no nodules on
the outside of my body, but my fingers are twisting outward a little
and I have a small amount of pain in them as well as my feet I do not
have the blood factor for RA, but it showed in x-rays. He suggested I
go to UCLA or somewhere that specialize in RA & Lung associated
problems. He had no referral for me. Can anyone give me any
recommendations or a starting point? I live in Bakersfield, CA.
Lissa
Hi gang,
I am back to the group after being away for over five years. I am
happy to report that I stopped the antibiotics in 2002 and am still
pain free. I had a blood test in October and my rheumatoid factor
was only slightly positive (27 versus 200 when I had RA).
I do have new concern and that is that my blood creatinine levels
have become elevated and my doctors think that it may have something
to do with being on antibiotics for a long period of time. Has
anyone else noticed this problem?
I have it on my to do list to update my story for posting sometime in
2008, i am happy to say that I still get calls from people looking
for moral support over the phone and I am always happy to oblige.
All the best to everyone for the holiday season.
Thanks.
Brian Howlett
Hi,
I don't know if you can get the same in Britain. But here in the US
if you get the generic Minocin made by RanBaxy company it is the same
as the brand name. It is a white capsule and will bear the name
RanBaxy. Believe me they work, though the other generic
manufacturer's of Minocin I have tried don't work. Well except for
Watson's Minocin which worked fairly well, but I was told they have
quit making it.
I was put back on the Minocin last week after a couple months off it
and within 2-3 days the inflammation in my knee was reduced so I can
vouch that RanBaxy Minocin works!
Best wishes,
Angela
Harold,
Wow, thank you for responding so fast.
What do you mean, your blood tests came back normal? I may have
incorrectly said Rh instead of RF. Is it the RF factor that 80% of RA
patients have in thier blood? Humm, still new and confussed, bear
with me. My blood tests were normal as well, RA did not show up in my
blood. It was only diagnosed by the xrays of the joints of my
hands.Since then, I have started getting pain in my fingers, wrists
and toes.
So what were you finally diagnosed with? How did you know your
diagnosis was incorrect? I'm fasinated!
Hi Everyone,
My name is Lissa and I'm new to the disease of Rhuematory Artritis.
Diagnosed 6 months ago,which now seems a lifetime ago. Here are some
specifics on myself;
Just turned 49 female
No Rh factory in blood, diagnosed from x-rays
Further x-rays found 1 very large nodule and 2 smaller nodules on lungs.
First real symptom was outurning of fingers and EXTREME EXTREME
exhastion, which has not stopped.
What I've done so far;
Lung needle biopsy revealed non-cancerous nodules, thank you Lord!
Have Rhuem. Dr.
Dr. of Nutrition
Dr. of Acupunture
Totally changed diet to raw foods, organtic foods and food high in
Omega 3.
Tried Methotrexate, horrible side effects, so stopped after 3 weeks and
no drugs since except for Provigil which is getting me through my work
day.
I'M NEW TO THIS! Besides trying to keep an optimistic and updeat
attitude and trying to laugh as much as possible, I don't know which
way to turn, so here's my question to anyone that might have a few
minutes to help me;
IF YOU KNEW NOW WHAT YOU WISH YOU WOULD HAVE KNOWN WHEN YOU WHERE FIRST
DIAGNOSED WITH RA...HOW WOULD YOU HAVE APPROACHED AND FOUGHT IT?
So, that's my question...thank you all in advanced!
This is an 8-min or so quick quiz on the facts (vs. the hype) of global warming.
It is time well invested.
http://www.geocraft.com/WVFossils/GlobWarmTest/start.html
The original Minocin came off the shelves in Britain in February and I
had to take a generic instead. In the last two weeks, pain and lack of
mobiltity was very bad and chronic fatigue set in. My left knee would
ache from 4-6 am daily. On Sunday, someone told me the original was
back in the pharmacists. Yesterday, I took one of them, this morning I
sprung out of bed, no pain, and much more agility. One capsule of the
brand name has led to an 80% improvement overnight, quite remarkable.
The generics did not seem to have the same efficacy as the original.
You are quite right about the fact that antix does not work for a lot
of people.
Dear Linda,
I can echo every word of your comment. I am a transsexual
woman but only living part time due to domestic considerations
hence although I attend numerous consultants and clinics
dressed, my records are in my male name, In spite of that, I
have always experienced courtesy and acceptance from all.
Regards,
Janice
You said:-
I just want to say that I have lived in England, which has real
socialized medicine (that's where doctors work for the state,
which is not true in the other countries that have a different
form of single payer healthcare--i.e., publiclly funded but
privately delivered). In England everyone who worked for the
NHS that I dealt with was always polite and wonderful.
Dear Group,
This is much belated response to earlier
correspondence about three different types of oil
for RA: fish oil, flax seed oil, and olive oil.
Fish oil is superior to flaxseed oil. Combining
fish oil with olive oil is even better.
A brief Google search brings up pages like the following:
<http://www.omega-3-fish-oil-guide.com/Fish_oil_vs_flax_seed_oil.html
.omega-3-fish-oil-guide.com/Fish_oil_vs_flax_seed_oil.html
"...This has led to the fish oil vs flax seed oil
debate. You see, flax seed oil is rich in omega
3's just as fish oils are. So, to answer the
question about flax oil vs fish oil, we need to
dig a little deeper, because there is not always
a clear-cut answer... First, the type of omega
3's vary in each. In flax seed oil, the omega 3's
come in the form of ALA. In fish oils, they come
in the form of DHA and EPA. ALA needs to be
converted by the body into DHA and EPA. This
conversion does not always happen easily or
smoothly for people, particularly those people
with less than optimal health, which often
includes elderly folk. For this reason, many
(including us here) argue that high quality fish
oils are a better source of omega 3's than flax
seed oil because you are getting DHA and EPA
directly without need for conversion."
<http://www.mind1st.co.uk/Flax_Seed_Oil_v_Fish_Oil.asp
Flax_Seed_Oil_v_Fish_Oil.asp
"Fish oil contains two omega-3 fatty acids known
as eicosapentaenoic acid (EPA) and
docosahexaenoic acid (DHA). Flaxseed oil, on the
other hand, is rich in alpha-linolenic acid
(ALA), which is the parent fatty acid to DHA and
EPA. Although similar in structure, the benefits
of alpha-linolenic acid, EPA, and DHA are not the
same. Your body converts alpha-linolenic acid
rapidly into EPA, and more slowly into DHA.
Roughly 11 grams of alpha-linolenic acid are
needed to produce one gram of DHA and EPA.
However, other foods in your diet can easily put
the brakes on this conversion process. A diet
that's rich in trans-fatty fatty acids, for
instance, will interfere with the conversion of
alpha-linolenic acid into EPA and DHA.
Trans-fatty acids are found in foods such as
cookies, some types of margarine, chips, cakes,
and popcorn. When you see hydrogenated oil on the
ingredients label of a food, there are probably some trans-fatty
acids in there somewhere."
http://www.journals.elsevierhealth.com/periodicals/nut/article/PIIS0899900704002\
588/abstract
"OBJECTIVE
This study evaluated whether supplementation with
olive oil could improve clinical and laboratory
parameters of disease activity in patients who
had rheumatoid arthritis and were using fish oil supplements.
METHODS
Forty-three patients (34 female, 9 male; mean age
= 49 ± 19y) were investigated in a parallel
randomized design. Patients were assigned to one
of three groups. In addition to their usual
medication, the first group (G1) received placebo
(soy oil), the second group (G2) received fish
oil -3 fatty acids (3 g/d), and the third group
(G3) received fish oil -3 fatty acids (3 g/d) and
9.6 mL of olive oil. Disease activity was
measured by clinical and laboratory indicators at
the beginning of the study and after 12 and 24
wk. Patients' satisfaction in activities of daily living was also measured.
RESULTS
There was a statistically significant improvement
(P < 0.05) in G2 and G3 in relation to G1 with
respect to joint pain intensity, right and left
handgrip strength after 12 and 24 wk, duration of
morning stiffness, onset of fatigue, Ritchie's
articular index for pain joints after 24 wk,
ability to bend down to pick up clothing from the
floor, and getting in and out of a car after 24
wk. G3, but not G2, in relation to G1 showed
additional improvements with respect to duration
of morning stiffness after 12 wk, patient global
assessment after 12 and 24 wk, ability to turn
faucets on and off after 24 wk, and rheumatoid
factor after 24 wk. In addition, G3 showed a
significant improvement in patient global
assessment in relation to G2 after 12 wk.
CONCLUSIONS
Ingestion of fish oil -3 fatty acids relieved
several clinical parameters used in the present
study. However, patients showed a more precocious
and accentuated improvement when fish oil
supplements were used in combination with olive oil."
http://www.arthritis.org/olive-oil-and-inflammation.php
"HOW OLIVE OIL REDUCES INFLAMMATION
While tasting extra-virgin olive oils in Sicily,
Gary Beauchamp, PhD, director of the Monell
Chemical Senses Center in Philadelphia, noticed a
ticklish, peppery sensation in the back of his
throat. It was nearly identical to the sting
hed felt when swallowing a liquid form of
nonsteroidal anti-inflammatory drugs (NSAIDs),
such as ibuprofen and aspirin, during previous
sensory studies. Further studies revealed that a
compound in the oil, called oleocanthal, prevents
the production of pro-inflammatory COX-1 and
COX-2 enzymes the same way NSAIDs work. By
inhibiting these enzymes, inflammation and the
increase in pain sensitivity associated with them
is dampened, says Paul Breslin, PhD, co-author
of the study. Researchers found the intensity of
the throaty bite in an oil is directly related
to the amount of oleocanthal it contains.
Stronger-flavored oils from Tuscany or other
regions that use the same olive varietal, have
the highest oleocanthal levels, says Breslin.
The studys researchers say that 50 milliliters
(ml), which is about 3-1/2 Tbsp., is equal to a
200-mg tablet of ibuprofen. Breslin points out
that amount of oil has more than 400 calories a
lot if you add this healthy fat without giving up
others. To avoid excess calories, use
extra-virgin olive oil in lieu of other fats, such as butter."
Sincerely, Harald
I was able to convince my dr to order a test for pulmonary hypertension
after I told him I had talked to others with Crest and was told I need
to be tested yearly. I also found notes from a previous cardio from 2
yrs ago that suggest I had the P.H. symptoms when he tested me (even
though verbally he had a nurse tell me nothing was wrong with me).
Anyway I need to know do I need to stop taking Diltiazem before I have
the echocardiogram done? Diltiazem is a calcium channel blocker which I
understand is somethings used to treat P.H., but I was given it for
Raynauds plus having a high heart rate from having bad heart valve. Was
thinking maybe if I am on the meds it will hide if I have P.H. How long
should I stay off the med before I have the test done?
Thanks,
Angela
Chris,
Do you have a list of doctors in Minnesota?
Thank-You
Rose
Hi,
I emailed the roadback.org folks and have read the book. I was hoping
to find a doctor in the Phoenix area that is treating patients with
low dose antibiotics. Actually, any place in Arizona would help. I
could then call that office and see if they knew of some one more
local or we could take her there if necessary.
How do I go about finding one if no one here knows of one? So far no
one has replied to me at the roadback. She is suffering so much and
has already had multiple surgeries. I would like to find some relief
for her suffering. She is unable to take pain pills and can't take any
more shots.
Thanks for you help,
Debi
Kathy,
If the lymph glands in your neck are hurting that means your body is
very busy fighting an infection. I have gotten that a lot since
starting abx for Lyme. When my glands have gotten really sore I rub
some SSKI on my neck where the glands are and it helps.
Angela
I guess maybe its a herx, I have bad post nasal drip that i feel like Im choking
and cant sleep. my glands in my neck hurt, slight sore throat, hands hurt. I did
have something last month too and thought it was a cold, was treated for sinus
infection. but this doesnt really feel like a cold to me, and also very
tired..... thanks for the input. Kathy
Sometimes its hard to tell. But for me if I start hurting bad in the
knees and shoulder joints, muscles hurt all over and feel tired even
though I have adequate rest then I know its a herx. Herxes generally
happened every 21-28 days. Women also tend to herx while they are
menstruating. Spirochetes reproduce every 3-4 weeks is why the herx is
timed like it is. But it varies depending on if you're spirochetes are
going in or out of thie cysts otherwise known as L-form.
Another thing- my LLMD kept telling me I didn't have a sinus infection
but that the sinus pain and running nose is part of the herx. If you
get green sinus discharge you know it is an infection, otherwise could
be the herx. So I will get postnasal drip during a bad herx and I
noticed I will also sneeze constantly. Taking half a dose of childrens
liquid Benedryl (dye free) will ease a herx. If you find you actually
quit hurting after taking Benedryl that's a good way to know you are
herxing. Because if you have a cold, that is a virus and Benedryl will
not help that.
Angela
how does one tell if they are having a "herx" or just 'coming down with
something"?
Ive been trying to increase my mino gradually, but I havent been feeling so well
lately so im stay at 150mg till i feel better, Im supposed to be taking 200 a
day. if its a herx how long will it last? Kathy
who uses antibiotics to treat rheum problems?? Mine wants to put me
on Plaquenil and I am scared of it.
Honestly I would look for a doctor in that area that treats Lyme or is
listed with one of the Lyme foundations. I'm NOT suggesting you have
Lyme. Its merely that Lyme drs are about the only ones not afraid to
prescribe long term antibiotics & Lyme docs generally all realize that
the rheum disorders are bacterial in origin. Plaquenil is highly
dangerous and should be considered the last thing to try after
exhausting all other possibilities, so I applaud you looking at all
your options first.
Angela
Is there anyone else, besides Debbie, who has been on, or is on,
photopheresis?
Linda, a long time member using antiboitics and photo. in remission
Speaking of B vitamins, does anyone know a brand that has all B
vitamins and folic acid in one easy to swallow gel capsule or even
softgel? My dr did advise me to take the all in one B that has
B1,2,3,6&12 and to make sure it was balanced with folic acid to
improve my thinking and ease neuropathy. The bottle I have is long
tablets which are not enteric coated and are extremely hard to get
down. It starts dissolving as soon as its in my mouth and of course
it takes horrendous. Plus it just doesn't glide down the throat well.
Angela
Cooky,
I just discovered 5 more of what I think are Lipomas. 4 more in the
same arm and then another 1 in the opposite arm. I haven't heard
from the second surgeon so I beginning to think nothing will ever
get done about this. But I will ask him about what you said if I can
ever get a second appointment.
Angela
Linda,
Are you taking any other meds? I take mino along with two other
meds.
Serena-
I don't think the yellow liquid was pus/plasma. I would say my dr had
seen her share of pus filled wounds in the past to know pus when she
sees it. The fact she was shocked by it says something. It was BRIGHT
YELLOW like egg yolk and more like the consistancy of oil you would use
to lubricate motor parts. Pus tends to be more watery and lighter in
color.
I found something very ironic about the whole experience since several
nurses had scolded me that I was overreacting to a little bump and it
was nothing. When the dr lanced it she was expecting a cyst, but
surprise look what came out!
Angela
Hi group,
I know many people have commented on "brain fog" as a symptom of the disease
process itself. Many of you have mentioned short term memory loss, difficulty
concentrating, etc. I'm wondering though, among those of you who have
recovered, does this too resolve completely? I'm thrilled with my progress
physically,
but find that my brain is working no better then when I was at my sickest.
This is of great concern, as I was planning on spending the next ten years in
school, getting an MD and PhD. I'm starting to wonder what good my health is
without my brain! Wondering if I will ever perform like I did before the
illness.
Wondering if I should forget being an academic. The whole hope, of course, is
to become a physician to help people like us. I'm only in month 7 of AP.
Hoping there is still more progress to come.
Thanks all,
Emma
**************************************
See what's new at
http://www.aol.com
Hi, I'm not sure how a angiolypoma differs from a Lipoma, but I am
going to look it up. I had what I was told was a Lipoma on my thigh
years ago and it was painful because my pants rubbed against it. I
couldn't stand for the doctor to even examine it. I had no problem
getting that one removed. But now one surgeon has refused to remove
the one in my arm because its not next to the skin and prominent.
Its not obvious by looking that something is under the skin. So he
thinks I'm crazy apparently and says it must be something else like
carpal tunnel. ?? Since when does that cause a knot under the skin?
The fact that having ultrasound treatments on it makes the
thing "angry" and increases pain suggests that it is a tumor of some
sort. Another dr had insisted it was tendonitis hence I was sent to
PT for ultrasound treatments to reduce the inflammation.
Angela
Hi Angela,
painful.<<<
Not too bad at this point...just an annoyance, because there is a taut
feeling when stretching out the fingers and I can see the constriction to blood
flow. Not complaining, though, because at least I can stretch out my fingers
now!!
When I got Lyme, which triggered very severe RA, my hands were clenched into
painful, swollen claws. Now, I have no sign of inflammation in my hands, all
but for one index finger that occasionally plays up. I probably won't have the
nodule removed unless it gets a lot bigger or starts to cause a contracture
in that finger.
sores and lumps. I was active on a Lyme board till it sorta fizzled
out but there was several people posting they had same bumps as me
and we were in about the same stage of Lyme treatment ie: similar
lengths of time on abx and similar abx used.<<<
Interestingly, there have been a few posting on the Road Back BB this past
year who have mentioned strange bumps and lumps - including people who haven't
got Lyme, but are on abx. So, is it the Lyme encapsulating, a reaction to the
abx or die-off toxins from mycos? Would make some sense, as well, that toxins
(from whatever source) would be released through the skin. I also get
ridiculously sweaty palms and soles, so I figured it must be my body just trying
to get
rid of the toxins via sweat glands.
started getting the pimply bumps on the bottoms of my forearms
mostly. Those would ooze out the clearish waxy stuff when squeezed. Once the
stuff came out they would dry up quickly and heal over.<<<
These sound very much like what I get, as well, only mine are initially itchy
and swell like little mosquito bites before healing over...the slight,
short-lived itch is what alerts me to them, as they are so small.
was as bright yellow as egg yolk and had the consistency and sheen of oil.<<<
Poor you...what a nasty thing to have to go through. As Cookey says, if this
happens again...and hopefully not!...may be good to get a dermatologist to
excise it and send off the "results" for labs. Whenever I've had any kind of
lump, bump, wart removed, he automatically sends it off for testing. Could the
"yellow liquid" have been pus/plasma or swimming with spirochetes trying to make
their escape? Sure would be interesting to find out.
stuff come out of her knee and the orthopedist told her "Looks like
you have Lyme disease". <<<
WOW - that's very interesting. My knees are still like grapefruits and I've
wondered about getting them drained and having the fluid tested. I just saw an
orthopedist with my daughter who had a sports injury...while chatting, he told
me chronic Lyme doesn't exist and to see a rheumy he recommended at Yale
(where the school of thought originated that chronic Lyme doesn't exist and from
where my LLMD fortunately escaped after his medical training and microbiology
research on Lyme!!!). Inwardly, I didn't know whether to laugh or cry...these
guys can be so hard and fast in their medical opinions....so I just nodded and
figured it wasn't worth the fight with this guy...the world was flat until it
became round! Thank God for LLMDs!
Yes, there really is a blurry line - Lyme mimics so many so-called
"autoimmune" diseases. Same for my RA, although LLMD is convinced that once we
get the
Lyme under control that my RA should go into remission. I know one thing,
Angela....I'm convinced abx therapy is the way to go for our diseases. Although
it's been a year and I still have days where I feel like I'm back at square one,
the days are increasing in number where I can actually see the light and I'm
at 80% functioning again.
Again, thanks for sharing with me. With this kind of open sharing of our
experiences, I hope to continue learning about this wretched disease and how
best
to conquer it.
Many blessings, Maz
Hi Maz,
Thanks for the post. That article on Dupuytren's nodules was
frightening. It looks really painful.
It would be interesting to hear from others if they have had weird
sores and lumps. I was active on a Lyme board till it sorta fizzled
out but there was several people posting they had same bumps as me
and we were in about the same stage of Lyme treatment ie: similar
lengths of time on abx and similar abx used.
Right after I first started abx well a few months into treatment I
started getting the pimply bumps on the bottoms of my forearms
mostly. Those would ooze out the clearish waxy stuff when squeezed.
Once the stuff came out they would dry up quickly and heal over.
Then this angry red, hot infected lump appeared on my elbow. Since
my LLMD was 2000 miles away he advised me to get someone local to
take care of it. I was refused by several drs until I convinced an
ob/gyn to lance it. She was freaking out and cussing the whole time
saying "I have never seen such #$*% in all my life", etc. And she
was a very skilled surgeon who had seen all sorts of tumors no
doubt.
The lump looked about the size of a dime raised above the skin. She
picked and scraped out bunches of tiny white things that looked like
aquarium gravel or kosher salt. She piled all the "stuff" on a gauze
pad. There was a circle of the stuff on the guaze about big as the
circumference of a silver dollar and piled almost an inch high of
what look like little white gravels. It was an incredible amount of
stuff to come out of what was such a relatively small bump. Now if
that wasn't weird enough as she announced "I think I got all that
crap cleaned outta there" this oily bright yellow liquid started
pouring out of the wound!! She was totally freaked out as this had
never happened to one of her patients. She's like catching the stuff
as fast as she could on guaze. I would say 2-3 ounces of the liquid
came out. It was as bright yellow as egg yolk and had the
consistency and sheen of oil.
I later talked to someone online who had a relative had yellow oily
stuff come out of her knee and the orthopedist told her "Looks like
you have Lyme disease". The weird thing is those white gravel I had
in elbow look exactly like the photo on the Scerderma Network
website on the CREST page of calcinosis granuales where there is a
tiny piece photographed against a dime. That's what the stuff in my
elbow looked like yet there is a connnection of the yellow oil that
also came out with Lyme. So the division between the two diseases
gets blurry IMO.
Angela
Hi Angela,
Thanks for your post!
formed of?
No, I'd never heard of these either until one started forming. I found this
website, which has a pretty good explanation, with diagrams, of what this is.
Doesn't say what it's formed of, but I suspect its fibrous tissue.
www.indianahandcenter.com/medical_dupuytrens.html
treatment going for you? <<<
Oh, you must have missed my email in reply to you a few weeks ago. I still
have it in my outbox, I think, so will paste it below for you.
starting Doxy and yes there was waxy stuff come out of some of the
smaller bumps.<<<
Thanks for mentioning this, because you've described exactly what I've been
getting! I've been getting these tiny little bumps that start out kind of
itchy. They look almost like small pimples. When I scratch them, the waxy stuff
appears and then they sort of look like little mosquito bites that have swelled
up. Next day the itchy swelling goes down and they have a tiny scab formed. I
wondered if I might be developing a sensitivity to the penicillin, so I
mentioned this to my LLMD. He did a bloodtest to check for antibodies, but
hasn't
called, so I'm assuming it's not that and just die-off. Nice, eh? LOL Thank
goodness I only get a few of them, usually on my arms and thighs, but had one on
my belly yesterday. They clear up pretty quickly. Anyway, thanks for mentioning
this, because I was a little concerned about this new development.
Will paste earlier email below now. I included some links I found about a
possible connection between scleroderma and Lyme.
All the best to you,
Maz
Subj: For Angela - Re: Overdue introduction.
Date: 10/18/2007 10:52:41 AM Eastern Standard Time
From: XXXXXX
was reading about them recently and one article suggested a link
between Lipomas and parasite infections.<<<
Hi Angela,
I have Lyme/RA (1 year/abx) and, although I don't have lipomas, as far as I
know, I have recently developed a Dupuytren's nodule on the palm, below my left
ring finger, attached to a tendon. If it gets too big, I will have to have it
removed, as they can cause contractures. It is supposed to be genetic, but I
know of no one in my family ancestory who has had this and it's too
synchronous that it formed months after getting Lyme. After reading Scammel's
book, The
New Arthritis Breakthrough, I was interested to hear that rheumatoid nodules
are the body's attempt to encapsulate the infection and I would think it would
make very good sense that other types of nodular growth follow a similar
pattern. I have also read on various Lyme symptom lists that nodules can be the
result of Lyme Disease.
I've been on a variation of the Shardt protocol, as well, since July. I pulse
two weeks on Diflucan - a washout week - then two weeks on tetracycline and
biaxin - another washout week and then repeat, along with weekly bicillin
shots. My LLMD is trying to elicit some major herxing and all I can say is that
it
is working! Feel pretty crappy most of the time, but have days where the
light shines through and I'm about 80% improved. Knees are being the most
persistant and still look like grapefruits.
All the best to you and hope you continue to improve on your Lyme protocol!!
Peace, Maz
Today my new rheumatologist told me I have polyarthritis and
fibromyalgia. He explained that polyarthritis is a mild RA that does
not deform the joints like RA. He said that 1 out of 10 get worse but
most stay the same and even some get off meds altogether. Can anyone
tell me more about polyarthritis.
I must say this doctor has been the best. He has done several tests
and x-rays and did more in my first visit (today was my second) than
the other two did in two in half years. And, he's for the mino. So,
I'm satisfied with him. He is concerned with my vitamin D deficiency
and is addressing that first and foremost right now to get my levels
back up.
Any info is appreciated on polyarthritis.
Thanks,
Serena
Does anyone else get Lipomas? Lipomas are fatty, noncancerous tumors. I
was reading about them recently and one article suggested a link
between Lipomas and parasite infections. And since I have Lyme and its
bacterial but at the same time spirochetes behave almost parasitically.
Then I've read RA is some sort of infection. Makes me think there is
more to this! I was diagnosed by an ortho with tendonitis in my arm but
after physical therapy didn't make it feel better I asked another dr. I
told him I could feel a knot in my arm and he discovered I have a
Lipoma and apparently it has wrapped around the tendon. I had one
before in my thigh and it really hurt too.
Anyone else had this?
Angela
Someone posted about her book yesterday...thank you very much...I remember
her...Dr Whitman had told me about her years ago...and we spoke...
I checked into the book today at Barnes and Noble...they have to order it, you
prepay it..$13.99 plus shipping for 3.95...so maybe Amazon is less expensive...
I think Amazon has free shipping?
Thanks for posting...was it Susan? Appreciate it very much.
Debbie
Fibromyalgia Pain Caused By Neuron Mismatch, Suggests Study
Main Category: Pain / Anesthetics News
Article Date: 31 Oct 2007
http://www.medicalnewstoday.com/articles/87058.php
Hi, I have diffuse scleroderma without internal involvement. I was
soooo sick at first...it came on like a vengence. I was given
disability very fast and I know why....they thought I was on the road
to death. Now, that was in 2001. Yes, I have claw hands and tight
skin. Yes, I have had at least 2 episodes of remission and the sd
coming back. My research doc says she would love to know why I get
better and the next patient doesn't. These diseases are so
individual. I really believe we need to think before we advise
anyone...because it scares you so much. I remember people asking me
how long I had to live. No one knows that answer.
Susan
Has anyone tried LDM-100? In researching it is, it is supposed to be a plant
based antibiotic. Looks promising and wonder if anyone has had success with it?
Thanks
Roni
I've been reading alot about the benefits of taking plant sterols/sterolins. I
just purchased some and want to start taking them as soon as they arrive.
Just wondering if anybody else takes this OR aloe vera??
Thanks!
Beth
A Canadian study has shown that minocycline seems to be helping to prevent
relapses and more damage in MS patients. A larger 14 city study is now planned.
Linda
Hi Daniel,
I've never taken Plaquenil. The rheumatologist refused to treat me
with medication even though he admits I have CREST. My GPs have also
said it was too risky to take Plaquenil and the Lyme specialist I
saw said it would make the Lyme worse. Right now I am on the
Schardt protocol for Lyme that is 50 days on high dose Diflucan and
alternate 50 days with Minocycline. The Mino seems to reduce my
joint inflammation, however, I think on the months I am on mino my
skin symptoms of CREST get worse. I also notice the extreme stress I
have been under the past two weeks has triggered skin flares, yet
when I tested ANA 5 weeks ago it was negative. My drs tend not to
test ANA more than once a year these days because they say its
worthless info as there is nothing much they can do for me anyway.
I also take Voltaren for inflammation and a number of supplements. I
think the JointMD has helped a lot with my knees. I am going back on
the tart cherry extract soon and may try to use Boswellian instead
of the Voltaren because Voltaren causes leaky gut syndrome and
lowers my platelets too much.
Angela
Hi all, I just registered all our phones on the "do not call list" its good for
5 yrs. you can go to www.donotcall.gov and register all your phones at once, or
you can phone 888-382-1222 but you must call with the phone you are registering
, so youd have to call from each of your phones. Kathy
Has anyone else experienced when their ANA levels are low they feel
terrible and have bad symptoms of the autoimmune illness such as
inflammation, pain and skin symptoms? Yet when the ANA is sky high
they feel better? I am going through this now where my ANA is reading
negative currently, but when it was over 2,000 I felt much better and
was able to be more active and have lower pain level.
This is crazy. I do not understand what is going on.
Angela
Hi Mary,
You don't have to register to go to the chat. Go to
www.rheumaticsupport.net and click on "chat". That takes you to the
chat sign in. If you have java you can get right in, if not, download
that free at www.java.com. Go earlier in the day to check out the chat.
If you want to go to the board, click on "board" and you will get
instructions on registering. At the top of the page in blue is a link
"register"..upper right, click that. All it takes is a user name and a
password.
Any problems, email me right away and i will get back with you as soon
as i see it..
Jan
Hello Everyone,
You all are invited to come to the doctor chat Thursday, Oct. 25, 9pm
eastern at rheumaticsupport.net. Click Chat. Dr. A of SE Florida will
be with us from 9pm eastern taking questions, or just come to "listen"
and take notes.
Besides doing oral and IV AP, he specializes in chelation, the tx of
Nanobacteria, hypercoagulation, thyroid and bioidentical hormones.
Jan
http://rheumaticsupport.net/chat.html
Seems on topic to me. Energy is a big issue for many of us,
especially when combined with hormone changes. Though some may not
want to discuss rheumatic symptoms as they apply to sex and
hormones, these are important issues for some to discuss. If a
reader has no interest in a specific rheumatic issue, he could
easily hit the delete button.
Hi everyone. It has been a while since I had a question. But here it
is, have any women out there experienced low testosterone(sp?) Quit
frankly, I have been feeling tired and of course no desire for
romance. So I went to my medical doctor and she called yesterday with
the results saying that I had low levels. Come in and lets discuss
our options for taking testosterone. Injections, creams, that is what
I read. IS this good or bad? What is safe?
Any advice?
Thanks,
Teresa in Texas
AP 5 years
DM
I have these weird sores on my scalp. If I get the calcinosis from
CREST it has always involved white stuff inside the sore aka:calcium.
However, I get these large sores on my scalp that hurt till I squeeze
them. Tons of clear fluid comes out then they make very large scabs on
my scalp. What the heck is this?
I told my dr about it before and he thought maybe it was a fungal
infection. But my scalp had healed by the time he could examine me.
Well it started up again and its larger sores and his office keeps
rescheduling my appointment so again I am not able to go to him when
the bumps are huge and oozing. I don't think this is fungal!
Angela
Dear Chris
Nowdays, My wife condition is worse.
My wife has Cleocin IV 900mg every month.
The pain in the middle fingers in both hands is extreme.
Pain relief medication is not working now.
She even can't digest food well.
When she eat, there is stomach pains.
When she eat some food, she vomit it.
Her legs are powerless.
Two weeks ago, she feels all of her body painful.
She don't want to go to local hospital.
Because she don't believe Korean Doctors.
Is there any way to solve this problem ?
Do you recommend any medication or any Doctor ?
Thank you vey much
Jae-Ho Yoon
Seoul, Korea
23th Oct. 2007
Hi Janet here:
Is Olive oil just as good as taking Omega 3 pills? I was just wondering as we
use only olive oil to cook with and I also take 2 Omega 3 caplets a day and
thought I would check with the experts. Thanks, you folks are the best.
If you are a patient of A. Robert Franco, M.D. or Andre Lallande, D.O., or are
considering visiting one of them, I have received notice that effective November
1, 2007 they will be moving their offices to Medical Park at Riverwalk.
11725 Slate Avnue
Riverside, CA 92505-7100
The phone number remains unchanged - 951-788-0850
Dr. Franco advises that mapquest directions are incorrect. If you need them, I
would suggest you call the office if they don't appear on his web page when it
is updated. www.thearthritiscenter.com.
Ethel
since I replied to a post finally thought I should at least identify
myself. I'm a 38 yr old woman with Lyme disease, severe arthritis, an a
rare autoimmune illness called CREST Syndrome. Except some of my drs
debate that the autoimmune illness isn't the real deal and think it was
brought on my the Lyme.<<<
Hi Angela,
Thanks for your post! I, too, have Lyme, which triggered severe, swift onset
RA, last year. I'm a 47 year old woman seeing a Lyme Literate Physician, here
in CT....previously the picture of health and very fit until finding a rash
on my stomach and back, very stiff neck, low grade temp and general malaise...
and then a couple weeks later starting with migraiting arthralgias and
myalgias. Doc refused antibiotics till my Lyme titre returned positive. It was
equivocal on ELISA twice. By the 6 week mark, the arthralgias had settled into
all
my joints and I couldn't move. I went back to my PCP with a chest infection and
he then prescribed doxy, saying if I had Lyme it would kill two birds with
one stone....by then, it was too late.
The protocol I am currently on is: 2 weeks Diflucan (generic fluconazole) 100
mg twice a day for two weeks. Then, I do a washout week before going on two
weeks of Biaxin 250mg twice a day and Tetracycline 750 twice a day. Another
washout week and repeat. Every week, I also have a bicillin shot in the rump.
Since Dec, my RF has come down from 550 to 67 and my cardio CRP is down from 26
to 9.
The purpose of pulsing everything is to elicit herxes. My doc likes to change
up the protocol every few months to keep these stealth-like organisms on the
run. I have had moments of just giving up, tired of the pain and wanting to
see an AP doc to go on minocin - my LLMD doesn't like minocin in the high doses
needed for Lyme, because of higher risk of mino-induced lupus symptoms. I
trust him...he's brought me to 80% functioning again since last December when I
was frozen in pain everywhere and had to lie in bed with arms and legs on
pillows. I just have to be more patient.
So, we have something in common, Angela! I read recently on a Lyme support
group that 10% of those infected with Lyme/coinfections will go on to develop
an autoimmune disease. Lyme triggers certain genes that this 10% of people
carry and voila! The very sad part for many is that not everyone tests positive
for Lyme, so the usual rheumatologic immunsuppressives only wind up making
these patients much sicker. This was the main reason I chose an LLMD over a
regular rheumatologist when my PCP said he couldn't help me any further (after 4
weeks of doxy when I got significantly worse). When I asked him if I could be
herxing, he had no clue what I was talking about.
There are a few of us Lymies over on the Road Back Foundation bulletin board
(roadback.org) and recently there have been one or two asking about
scleroderma and Lyme. Here are a couple of interesting articles on PubMed that
seem to
indicate a possible link between scleroderma and Lyme:
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&
dopt=AbstractPlus&list_uids=15649200
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&
dopt=AbstractPlus&list_uids=15009307
These are fairly recent studies, which is interesting, because prior to this,
studies in the late 80s and early 90s showed no connection.
Wishing you well, Angela! I don't post here often, as I get the daily digest
and scrolling through reams of posts and reposts can sometimes get
overwhelming. So, I generally just lurk and learn.
Peace, Maz
Hi all,
Thank you all for replies. I am glad that I can get useful information
which I cannot get in my country. I was right to ask about it before
buying them,,.
Thank you:-)
CHI
Hi Jae-Ho yoon,
I don't know why but I cannnot send to your mail address, so I post it
here.
Thank you for a reply. Your wife's experience helps a lot.
I cannot walk without crutches now,,. I hope I will succeed on AP
therapy.
Say hello to your wife.
Thank you.
CHI
Hi Debbie,
I've never had contact with anyone before who had Crest. May I ask what
kind of treatments you have been given for it? Anything you recommend?
Does your ANA go up and down? The highest ANA I've had was over 2,000
something weird like 2,650...I can't remember exactly because it was a
weird number. I tested last month and its now negative. It bounces up
and down constantly.
I've received little treatment except for my dr treating me for
arthritis and Lyme has started trying to keep an eye on the Crest. I
went to a rheumatologist who said "there's nothing I can do for you"
charged me $350 and dismissed me.
I'm actually have trouble getting the basic care for Crest. I have to
travel long distance to my dr. So when something flares up I've had
difficulty getting treatment here in town like with the Calcinosis
nodules that have to be removed. I had a painful, infected one on my
elbow that I finally convinced a ob/gyn to remove as she is the only
one in town who will see me for anything now. The other drs in town
find out I have Lyme and Crest and they tell me they don't want
to/can't treat me or have never heard of either illness and think I am
making it up. I'm made to feel like some kind of monster for having
these illnesses.
Angela
Hi,
Just wanted to add I also had a huge increase in tinnitus (already
had some tinnitus) when taking Disalcid that interfered with my
hearing. I was put on Disalcid several times and each time it did
this. That was part of the reason I was switched to Voltaren as my
daily NSAID that and the Disalcid quit working against the pain and
inflammation.
Angela
Just wanted to say hello to all here. I've been lurking on and off, but
since I replied to a post finally thought I should at least identify
myself. I'm a 38 yr old woman with Lyme disease, severe arthritis, an a
rare autoimmune illness called CREST Syndrome. Except some of my drs
debate that the autoimmune illness isn't the real deal and think it was
brought on my the Lyme. I have been on antibiotics for 2.5 yrs for the
Lyme. I had it 16 yrs before I could get a diagnosis despite approx 18
tick bites and several rashes! I have also had Bartonella which
finally got rid of I think and also mycoplasm infections. Its been
interesting to see some symptoms I had for years go away with long-term
antibiotic treatment.
I'm currently on the Schardt protocol for Lyme using Diflucan 200mg
daily for 50 days then alternating 50 days with an antibiotic which
currently is Minocin. Schardt suggests alternating with a penicillin
abx, but I am allergic to those. Minocin is also experimentally used to
treat CREST plus I have severe CNS issues so the dr felt Minocin was
the logical choice with its anti-inflammatory properties and ability to
cross the blood-brain barrier.
Is there anyone here with similar illness? Any doctors here who have
suggestions or comments on my treatment?
Angela
Hi all,
This is from Japan. I am suffering from RA.
I found this in the internet.
http://www.wobenzymonline.com/joints.htm
It says the supplement is good for RA. Is it popular in the US? Has
anyone tried this? Is it so effective? I really want to know.
In Japan, we can't get this at any shop. I need to import through the
internet from the US.
I will thank you for any information.
CHI
Hi all;
I am from Japan. I have been suffering from severe RA.
First, I'll tell you about my AP therapy story.
I tried antibiotic therapy for 8 months. Herx reactions started
immediately at the same time, my knee joint became much more stiff.
After doing it for a while, I started to have acupuncture and massage
every week, then I still felt siffness, but the pain was reduced very
much.
In June, I reduced the amount of the antibiotic that made my
condition better. Then in July since I thought also acupuncture was
very effective, I stopped having antibiotic to try only acupuncture.
And now, I'm getting worse,,though I still continue acupuncure. Worse
than before starting anticiotic therapy. That's scaring thing.
I will start antibiotic therapy again, but I wonder I will not be
able to stop it forever,,then I will be much worse when I stop it.
I want to know that there are some people who could stop antibiotic
therapy after doing it for years.
By the way, in Japan, I think that there are few people doing this
therapy. There are no groups like this. I need to get information in
English.
Thank you for reading.
CHI
my most recent pulmonary function tests show that the pulmonary fibrosis is
getting worse after being stable for 4 years.
would those of you who have pulmonary fibrosis share w/me what you have done
besides the AP (I've been on AP for 8 years)? E.G. diet changes,
supplements, breathing exercises, oxygen, walking, etc.?
I would appreciate all the help I can get. thx.
Sandy Decker
I saved it - so I could go back and investigate after more feed back was
given.
K
Did you take 250 mg per day three times a week or 2x250 mg per day?
Thanks, Edith-
Hi.....haven't heard much from anyone about the oil pulling or those foot
pads some of us were using. Anybody continuing to do either and any good (or
other) feedback and results?
The foot pads gave off such a dark color for me for quite awhile but I
stopped when spring/summer began b/c I just didn't feel like wearing sox
overnight, but I think I"ll start up again soon. (mainly b/c IF it's accurate,
I'd
like to have the pads clear in the morning)
thanks,
Judy
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Hello all,
I have been on minocyclin (100 mg/day 7days/wk) for quite a few yrs.
Used to be 200mg/day but I seem to forget the morning one....and 100mg
dose worked well for me until about 6 months ago. Now I have to make a
change as things are getting worse. Before agreeing to MT I thought
I'd try adding zythromax as I have read about that. My MD is great and
willing to try the protocol but by mistake I got a prescription for
250mg 2x/wk (1x for tues and 1x for thur) then I read about 2x 250 mg
twice a week but those people also take 100mg mino only the other
three days apparently....what about the week-end? Any thoughts or
feedback? I was thinking on staying on my current dose of 100 mg mino
(mo, wed, fri, sat, sun) but substituting 250 mg zythro. on tues and
thurs. would that be enough for this trial?
Thanks for any help, Edith
Christine,
I would have a hard time trusting a doctor that told me, "herxes don't
exist anymore."
They are very real, and definitely exist. And if 200mg of Minocycline
per day doesn't cause one, I'd be surprised!
Good luck,
Lisa in Western Australia
Hi folks,
One more question ...
I saw an AP doctor recently and I am feeling uncomfortable with the
whole visit. He ran no blood tests whatsoever and wrote out a
prescription that was different than what I have read in the Road
Home. He wanted me to take 200 mg. Minocycline daily. I asked about
herxing and he told me that that doesn't happen anymore. It was
because of an older medicine. Also, he told me if this doesn't work,
then I should try something else in 4 months.
I went to him despite the fact that I have a wonderful
rheumatologist who was willing to try the AP because I wanted to go
to someone who had experience. I am feeling uneasy now and am
wondering what you folks think about the things he had to say.
Thanks,
Christine
Hi folks,
I have recently started the AP. I am taking Minocin, 100mg.on M,W,F.
The first week I ran a low grade fever and felt like I had a flu. I
have just headed into my second week and I am struggling with nausea
and underarm pain.
I am wondering if anyone else has had this underarm pain. Is this
swollen lymph nodes? Is the nausea herx or a side effect of the
Minocin?
Thanks,
:o) Christine
hello every1
i'm looking for something to help my pain besides the 2 lortabs i take
daily.a male friend of mine from pakistan told me about useing curry
power in soups it works.when i feel really crapy i use alot of it and
it helps when my head is suff up.i went off of meantoetixed about 4
years ago cuz i was bleeding for two weeks every time i had my monthly
and would have these bout of sadness i would cry for no reson at all i
call the doc that had then and he told me throw pills away witch i
did.i tired both shots humaner and emable.the emable stop working for
me and the humaner didnot help at all.i'm very small i have both r a
and both forms of lupus my sle form is actacking my joins as well as r
a.i'm only 1 in my family with these illness i'm 4"10".mom and i dont
have alot money i want too get hottub butt its only us and she works
part time to pay bills.were going have it really bad this year if she
cant work during winter with riseing in oil price were going have kept
the heat down are last oil bill was over $500.00 for 150 gals of oil.we
need a exteme home makeover done.i have retired horse and three cats we
are trying make ends meet.i'm looking in to getting a cci dog to help
me get around..i'm sad cuz i have alot on my mind cuz i'm moving my
horse next monday to aother barn so she can injoy rest of her life at a
retiremeant home for horses.
plz prayer that my mom and i come in to money that we can use to pay
off the bills and so my mom can stop working so she can relx and injoy
her grandchilden
tty jackie
Soheila
SD seldom has herxing, do you suppose you could be having yeast
symptoms? They mimic our disease symptoms. Have you been taking
probiotics (LOTS OF IT) from the beginning? You might want to see if
you can get your doc to prescribe diflucan to see it that helps. If
not the natural antifungals might help you. Then be careful of carbs
in your diet. JMHO. Jan
...or have knowledge about it?
Jeannie
Hello Group
I have SD and been on minocine for almost 6 months.
after 3 months I noticed improvements. It just lasted
2 months. A month ago I had a flu-like symptons and my
hands and feets start swelling and ache. I reduced the
dose og minocine to 100 mg a day on my Doc suggestion.
I don't know if it is herx reaction to antibiotic or
flu
trigered the sd. I have pain in my hands and feets and
if I don't take 800mg iboprofen I wouldn't be able to
walk. I like to know about your experiment with herx
and your sugestion.
Thank you
soheila
is OLE good for fighting yeast? how does it compare to oregano oil?
another question - ethel - when you 1st started whey did you find it
flared your joints? i get major joint and muscle pain when i try it.
thanks
monique
Oxidative stress and mycoplasma fermentans survival.
http://cat.inist.fr/?aModele=afficheN&cpsidt=17838549
Geoff
What amazing and wonderful news! I am happy for you and your family!
Linda
What do you recommend these days for OLE brand/s?
TIA
Denise
www.bestdogcookies.com
After a month long bout with in the hospital, I can honestly ay the reports
of my death have been wildly exaggerated. Thank goodness!! Thanks to all
who wrote my family. At one time no one was sure I Would make it out....now
after reviewing the whole mess, this is what I have learned.
......because of the meds I have been on over the years...less is always
best .
As I get older and my system changes , I will try to stay on the
least meds that keep me up and going.
I must be responsible for my own health.
Again, thanks for all your support and prayers. Martha
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Hi, I was recently diagnosed with Psoriatic arthritis. I'm only 31
years old and the thought of going on the TNF Blockers for the rest of
my life is a pretty scary. I'm interested in finding a new
rheumatologist that will try the antibiotic treatment. I live north
of Philadelphia in the Willow Grove area. Can anyone recommend
someone I can go see? Thanks,
Seth
Within the last couple weeks there was some discussion about aloe juice. I know
Ethel said that Coat's was the best.
I have COPD and I remember reading about someone that was bringing up mucous
and then a gob of something.
Everytime I get an xray I have a spot on my lung. It has been bioped and it
is not cancer or anything to be concerned about but I thought that possibly this
would do the trick of possibly clearing up my lungs somewhat. I know it is not
the magic bullet but it sure wouldn't hurt me.
If someone happened to save this, would they forward it to me?
Thanks
jan
I created this cool friends network and added you to my friends network. Hit-up
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Following up on my post re aloe vera, I found this email sent to me by 'bg' who
was on the list for years.
[Interesting post. Read article on Aloe at bottom of page.]
From: "H. Lynn Knapp" <lynnknapp@m...
Date: Fri Jul 11, 2003 5:21 am
Subject: Group Discount Offer From Allied Pharmacy For Pharmaceutical
Grade Aloe Vera: Contact Info, Background Info, and Lynn Shares
ADVERTISEMENT
Dear Group:
Jerry Jackson, R.Ph. of Allied Pharmacy, who specializes in
Pharmaceutical grade Aloe, is offering a discount to group members of 10% if you
buy two bottles. This is quite a savings and the product is the best grade and
most potent Aloe I have been able to find, as well as having the reputation of
Allied Pharmacy along with it.
I have shared with you repeatedly how much it has helped loosen the
mucus in my sinuses and lungs from my depressed MSH, ('MSH' STANDS FOR
"MELANOCYTE-STIMULATING HORMONE"), from A Neurotoxin Mediated Illness. I can
not recommend it enough.
Aloe at such high concentrations is also a powerful cytokine
suppressor. This has been well documented by Dr. Danhof,MD, Ph.D. the expert
researcher on the uses of Aloe. One capsule in equal to one bottle of Aloe. 2
capsules 4x daily is the highest recommended dose for Immune support,
inflammatory cytokine suppression and the movement of congestion and
detoxification.
I have told this story before, but it has been awhile. So here
goes. When the Aloe was first given to me 3 yrs. ago as part of my Stealth
therapy with IV Ganciclovir, I almost choked to death so much mucus was released
and needed to be expectorated. I wanted to stop it as I thought the Aloe was
causing the mucus, but my physician asked me not to. I coughed up mucus in
gobs. I coughed so hard, I thought I would brake a rib. Finally one day I
coughed so hard, I coughed up something that had been deep in my lungs for
countless years. It was a hard piece of mucus, green in color and looked like a
fish skin. It was about 2-3" in length. It was smooth on one side, but the
other had these deep circles imprinted in it giving it a fish scaly look. My
physician explained it was mucus from maybe 10 years in the sides or bottom of
my lung that had hardened over time and was green from containing infection.
The circles were the imprint of the lining of my lung.
Since then, nothing that dramatic has occurred, but over the years
the Aloe of Allied Pharmacy which is the strongest and purest capsules at 400mg
each, has been able to loosen and move the mysterious continuous build up of
mucus in my lungs and sinuses.
It was not until I began the Neurotoxin therapy and I began to
almost choke to death again, with abundant amounts of mucus coming up out of my
lungs and draining out of my sinuses, did I learn the mysterious cause to my
mucus problem. Neurotoxin Mediated Illness affects your hypothalamus and causes
a deficiency in MSH, a hormone that regulates the mucus. As Dr. Shoemaker
defined MSH: "MSH is a hypothalamic neuroregulatory/cytokine regulatory/mucus
membrane regulatory hormone. This causes a continuous build up of mucus in the
lungs, and sinuses and I would guess the intestines too. As you begin to treat
the Neurotoxin disease, the MSH level begins to raise, and the regulation of
mucus improves and the mucus expectoration takes place.. For me this intense
mucus expelling lasted the first 2-3 weeks of my Neurotoxin therapy. It is
still occurring to a lesser degree. I believe my taking the Aloe has helped me
in this expectoration process of the mucus and has made the treatment process
easier.
Please keep in mind that Aloe helps Stealth Virus also by producing
anti-inflammatory cytokines, which may help the Neurotoxin Illness also as with
the Neurotoxin Illness, there is a big cytokine problem which is why taking
Actos concomitantly with the Cholestyramine is so important as Actos suppresses
TNF, a major inflammatory cytokine.
As to the dose, I take 2 400mg. capsules 4x daily. This is the
highest recommended dose. I hope this explanation helps some, and so does the
Aloe.
ALLIED PHARMACY SERVICES, INC. : JERRY JACKSON, R.Ph. and owner
Allied Pharmacy specializes in Pharmaceutical Compounding. He also is an
expert on the use of ALOE VERA (whole leaf lyophilized) in the treatment of
disorders of the Immune System. His Aloe Vera comes in 400mg capsules, and each
capsule is stronger than a whole liter of Aloe juice! Aloe is long known for its
healing properties, and more recently is being investigated as a very powerful
Immune System enhancer. It is well documented in the literature that Aloe may
play a critical role in fighting infection, both bacterial and viral. According
to Dr. Atkins, a leading "Alternative Medicine" expert, in his book,
"Vita-Nutrient Solution" he says, and I quote: "Some of the more recent Aloe
research points to the plants capabilities against Immune weakness, Viral
Infections, and even Cancer. Stronger preparations are necessary here...The
effective is at least 800mg, the equivalent of drinking 3 pints of aloe juice .
The Aloe must be sure to contain "acemannan" which is chemically unstable." To
be sure you are receiving chemically stable acemannan, the Aloe must be
"Pharmaceutical Grade." The Aloe Vera capsules from "Allied Pharmacy" are 400mg
per capsule and pharmaceutical grade. Allied Pharmacy is located : 801 Stadium
Dr. #111, Arlington, Texas 76011-6245, phone: 1-800-428-6331; Fax: 817-860-1275.
Jerry's Aloe is 100% pure and organic.
http://alliedrx@flash.net
ALOE AND CYTOKINE LEVELS
Dr. Danhof, M.D., Ph.D.
In a variety of chronic disease entities, the cytokine, TNF-alpha, is a
major pro-inflammatory agent responsible for various symptoms of the disease.
For example, in Crohn's disease, the TNF-alpha levels are very much elevated,
and the levels correlate very well with the symptoms and severity of the
disease; similarly the levels of another cytokine, transforming growth factor
(TFG), which is anti-inflammatory, are very low.
The administration of aloe to Crohn's disease patients has a rapid and
profoundly beneficial effect in these patients owing to the "immune modulation"
action of the aloe, i.e., it substantially lowers the level of TNF-alpha, and
simultaneously increases the level of TGF, restoring the balance between the
pro-inflammatory and the anti-inflammatory cytokines which is associated with
the onset of remission of the disease.
The restorative modulation by aloe of competing cytokine levels in such
diseases as chronic fatigue syndrome, systemic lupus erythematosis, chronic
ulcerative colitis, rheumatoid arthritis, etc., reduces the abnormal elevation
and increases abnormally low cytokine values thereby inducing the remarkable and
salubrious modulatory actions of aloe polysaccharides on the immune system.
Allied Pharmacy and Aloe Vera Jaumave: www.aloejaumave.com
This is the product information on the Aloe Vera used by Allied Pharmacy
Lynn
hi vicki
i am sorry to hear this. don't give up. you can find something. what did
marge say re curing her sjogren's?
monique
i found mercola didn't help at all. i went in late 03 and he made me pay
for a bunch of expensive nutrit and EFT consults and they did nothing.
he refused to put me on ap. says he can cure RA without it. don't think
so. a friend of mine had the same problem.
monique
Hi I wanted to ask if anyone is on humira...I have now caught a cold, do I need
to worry about this? anything I should be doing differently? I see my local
rhuemy on tuesday (bloodwork on monday) but Im also waiting to go to DC next
week to see an AP DR. But while on Humira it says to watch for any infections
and i am not sure if a cold counts as something to watch for. Kathy
Wow! This is very interesting since this comes from coconut oil and I have just
been
reading about coconut oil as antibiotic use. We started using coconut oil in
the last couple
of months for cooking, etc. and are very happy with it... now wondering about
using more
of it.....
Anyway, just wanted to say please keep us posted.....
Rhea
Heather, thanks for letting us know so we don't wonder. Martha was an
asset to this group giving many RA patients hope that they too can get
well. Just 2 weeks ago she was posting. It's all unbelievable. I know
many people here will miss her. I wish you and your family the best
during this difficult time. Please come back and let us know if there
is anything we can do.
vicki
have you posted on the MP board? they are best equipped to answer
questions re MP. this board is more for ap.the doc in vancouver who
treats with MP - he and his wife are also on it - says he too felt best
in sun as D can act as a seco-steroid so you feel better initially but
it makes you worse over long run. every fall/winter i feel worse and he
says that is why - the steroid - in the form of the sun - is being taken
away.
monique
My husband has been tenetively diagnosed with scleroderma and I have
some yet to be labled autoimmune condition. We were trying to deal
with all of this when Hurricane Ivan took the roof off our house and
put us in a trailer for a year. After two more evacuations, we fled up
here to the northwest Chicago suburbs in front of Hurricane Katrina.
My husband transfered up here and then found a much better job.
Getting established up here all over again where we don't know anyone
while being sick has been difficult but trying to figure out who might
actually help us has been mind numbing. Thanks in advance to anyone
with advice.
Hi everyone,
first of all, Monica, I had my app't w/Dr. Brownstein 2 days ago. He does
not "do" Marshall Protocol per say, and works mostly w/minocin, doxy, zithromax,
etc. Right now I'm on doxy M/W/F and zithromax Tu/Th. Then, he introducted
"Lauricidin" which he is using with many of his patients now and has had
good results. He explained it all and of course, at home, I did my own research
on the interent. Lauricidin is not a drug but a dietary supplement and has
anti-fungal, anti-bacterial and anti-viral properties in it. It's itsy-bitsy
white pellets which is taken w/water with or without food. Anyway, I began two
days ago, and will see if I feel a difference.
Anyone in the group taking it or have heard of it? I hadn't till I spoke
w/him.
His rule for Vit D is "labor day thru memorial Day" supplement, and the
other mths regular sunlight. We're here in Mi so I'm sure it depends on what
state you're in....can get very dreary here in the winter but summer very
sunny.
To everyone's health!!
Judy
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Hi Ute,
A few of us at rheumaticsupport.net are trying the oil pulling as
well. Some results in just a few days have been increased energy and
the teeth whitening. None of us have used sesame yet, but coconut oil.
I will be interested in your ongoing progress!
Jan RA~lyme/AP 2 years.
Hello friends,
I recently came upon this Ayurvedic technique I never heard of before.
Within a few days it came to my attention from several unrelated sources,
so I thought I check it out. Since it is fairly easy to implement, and
inexpensive to boot, I thought to give it a try. The idea of being able to
detox that way is attractive. I have only done it for one week, so I can't
report a miraculous cure yet ;-), but what blew me away was that after just
a couple of days swishing with sesame oil twice a day, my teeth became
markedly whiter including the tooth that had discoloration from the
Minocin!!! I'm impressed. My teeth feel also very clean. Relating this to
the recent conversation about root canals. It may be a good practice for
those of you who have root canals that don't seem to give you trouble (that
you know of, yet). Off course I wouldn't mind having the other benefits,
too. It says that Dr Karsch cured himself of arthritis. I'll let you know
how it goes :-)
Take care,
Ute
http://www.oilpulling.com/
http://www.earthclinic.com/Remedies/oil_pulling.html
This is worth reading. Be sure to read to the end. You will be amazed.
Let's hear it for Costco!! (This is just mind-boggling!) Make sure you read
all the way past the list of the drugs The woman that signed below is a
Budget Analyst out of federal
Washington , DC offices.
Did you ever wonder how much it costs a drug company for the active
ingredient in prescription medications? Some people think it must cost a lot,
since
many drugs sell for more than $2.00 per tablet. We did a search of
offshore chemical synthesizers that supply the active ingredients found in
drugs approved by the FDA. As we have revealed in past issues of
Life Extension, a significant percentage of drugs sold in the United States
contain active ingredients made in other countries. In our
independent investigation of how much profit drug companies really make, we
obtained the actual price of active ingredients used in some
of the most popular drugs sold in America
The data below speaks for itself.
Celebrex: 100 mg
Consumer price (100 tablets): $130.27
Cost of general active ingredients: $0.60
Percent markup: 21,712%
Claritin: 10 mg
Consumer Price (100 tablets): $215.17
Cost of general active ingredients: $0.71
Percent markup: 30,306%
Keflex: 250 mg
Consumer Price (100 tablets): $157.39
Cost of general active ingredients: $1.88
Percent markup: 8,372%
Lipitor: 20 mg
Consumer Price (100 tablets): $272.37
Cost of general active ingredients: $5.80
Percent markup: 4,696%
Norvasc: 10 mg
Consumer price (100 tablets): $188.29
Cost of general active ingredients: $0.14
Percent markup: 134,493%
Paxil: 20 mg
Consumer price (100 tablets): $220.27
Cost of general active ingredients: $7.60
Percent markup: 2,898%
Prevacid: 30 mg
Consumer price (100 tablets): $44.77
Cost of general active ingredients: $1.01
Percent markup: 34,136%
Prilosec : 20 mg
Consumer price (100 tablets): $360.97
Cost of general active ingredients $0.52
Percent markup: 69,417%
Prozac: 20 mg
Consumer price (100 tablets) : $247.47
Cost of general active ingredients: $0.11
Percent markup: 224,973%
Tenormin: 50 mg
Consumer price (100 tablets): $104.47
Cost of general active ingredients: $0.13
Percent markup: 80,362%
Vasotec: 10 mg
Consumer price (100 tablets): $102.37
Cost of general active ingredients: $0.20
Percent markup: 51,185%
Xanax: 1 mg
Consumer price (100 tablets) : $136.79
Cost of general active ingredients: $0.024
Percent markup: 569,958%
Zestril: 20 mg
Consumer price (100 tablets) $89.89
Cost of general active ingredients $3.20
Percent markup: 2,809
Zithromax: 600 mg
Consumer price (100 tablets): $1,482.19
Cost of general active ingredients: $18.78
Percent markup: 7,892%
Zocor: 40 mg
Consumer price (100 tablets): $350.27
Cost of general active ingredients: $8.63
Percent markup: 4,059%
Zoloft: 50 mg
Consumer price: $206.87
Cost of general active ingredients: $1.75
Percent markup: 11,821%
Since the cost of prescription drugs is so outrageous, I thought everyone
should know about this. Please read the following and pass it on.
It pays to shop around. This helps to solve the mystery as to why they can
afford to put a Walgreen's on every corner. On Monday night,
Steve Wilson, an investigative reporter for Channel 7 News in Detroit, did a
story on generic drug price gouging by pharmacies. He found in his
investigation, that some of these generic drugs were marked up as much as
3,000% or
more. Yes, that's not a typo.....three thousand percent! So often, we blame the
drug companies for the high cost of drugs, and usually rightfully so. But in
this case, the fault clearly lies with the pharmacies themselves. For
example, if you had to buy a prescription
drug, and bought the name brand, you might pay $100 for 100 pills.
The pharmacist might tell you that if you get the generic equivalent, they
would only cost $80, making you think you are "saving" $20. What
the pharmacist is not telling you is that those 100 generic pills may have
only cost him $10!
At the end of the report, one of the anchors asked Mr. Wilson whether, or
not there were any pharmacies that did not adhere to this practice, and he said
that Costco consistently charged little over their cost for the generic
drugs.
Going to try this again as I don't think my message came through. Sorry!
Sandra
I went to the Costco site, where you can look up any drug, and get its
online price. It says that the in-store prices are consistent with the
online prices. I was appalled. Just to give you one example from my own
experience, I had to use the drug, Compazine, which helps prevent nausea in
chemo
patients.
I used the generic equivalent, which cost $54.99 for 60 pills at CVS. I
checked the price at Costco, and I could have bought 100 pills for $19.89. For
145 of my pain pills, I paid
$72.57. I could have got 150 at Costco for $28.08.
I would like to mention, that although Costco is a "membership" type store,
you do NOT have to be a member to buy prescriptions there,
as it is a federally regulated substance. You just tell them at the door
that you wish to use the pharmacy, and they will let you in. (this is
true)
I went there this past Thursday and asked them. I am asking each of you to
please help me by copying this letter, and passing it into your own e-mail,
and send it to everyone you know with an e-mail address.
Sharon L. Davis
Budget Analyst
U.S. Department of Commerce
Room 6839
Office Ph: 202-482-4458
Office Fax: 202-482-5480
E-mail Address: _sdavis@..._ (mailto:sdavis@...)
I am forwarding this on to you for your own information and decisions. I
received this in the email today. My own medications are so very high but
seeing this, I may just have to do an investigation on my own. Sandra
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cleanse would be beneficial since it would wipe out those spores and
infection. I found a product on the internet called OxyPowder that is supposed
to be
good and do the job. Any suggestions or experience on doing a colon cleanse
while trying to rid the CDiff spores?<<<
Hi Roni,
I've used oxy-powder prior to doing a liver flush, as a colon cleanser, and
continued using it in a low maintenance dose for about a year. It's an
excellent product (a great safe alternative to a colonic) and I found Global
Healing
Center to be very helpful when calling to ask for advice. If you're unsure of
dosing or just whether to use this product with your condition, a quick call
through to them should help.
Hope you feel well soon!
Peace, Maz
I am looking for someone that would like to get to know each other. If you would
like to know me more, please check myspace here:
http://dikerfladdy.googlepages.com/passion.htm
Hello,
I have been on minocycline (not Minocin) for about 4 years. It worked
great in the beginning but in the last year it hasn't. I went back on
the higher dose without improvement and now I need to make a change.
The rheumatologist is preaching for methotrexate which I don't want so
they offer Asulfidine (sulfasalazine) while my naturopath wants to try
low dose cortisol (my adrenals are pretty shot) but even though I have
little doubt about hormomnes being a big part of the problem, I am
quite reluctant to start messing up with them. Someone else suggested
trying other AB such as biaxin or zythromax...any experience with
those? I would be more tempted to continue the AB approach.
Thanks for any help.
You should be able to remove yourself from the group I believe.
I seem to be having a problem getting my e-mails through to the group. This is
just checking to see if it makes it to the group.
Thanks
Roni
Hi youn's guys as we say in Pittsburgh,
I visited my AP doc today and he suggested I look up lowdosenaltrexone.org
on the internet and tell him what I thought.
So I did and am impressed. I do not sell this. It actually is a
prescription. What I noticed was that it increased endorphins that auto
immuners lack or have a low level of. Most of us developed our diseases
after an emotional trauma and what does that do to endorphans?.I think it
would lower them.
Anyway I need to talk more to my doc about maybe ordering this. I will let
you know if I try it and what happens. In the mean time if anyone has a
cooperative doc and wants to try it let us also know what happens.
Cooky
AP10 yys
--Roni, C. diff. as you suspected was most likely caused by the
Cliny, As it can knock out the bacteria in the GI tract that keeps C.
diff, under control. The stress you mentioned can always add to
making any of our conditions worse, Hopefully you are on a very good
pro-biotic. Adjunct Professor Emeritus-Laboratory Science, Carol Fisch
I was diagnosed with RA in 2005, The Rhuemy doctor started me on
Methotrexate shots, I was started at 5 and finally moved up to 20
after that I was so sick from t