Re: [rheumatoidarthritis-low dose naltrexone] No Success so far with LDN

[Guest guest]

Dear Tatiana:

Sorry for the long response but R/A is such a complicated/misunderstood ailment,

many words are necessary so here goes:  I started having RA symptoms

(feet/ankles; hands/wrists) in mid-Apr2007 and my Internist prescribed

prednisone 40 mgs/day.  I got a firm diagnosis (moderate case) from a referred

Rheumatologist in mid-May2007 who then prescribed Methotrexate (MX) at 15 mgs

one time per week and dropped the Prednisone down to 20 mgs.  Eventually, I was

weaned off the Prednisone but the Mx was increased to 20 mgs by late 2008.  The

Rheumy also prescribed 1 mg Folic Acid (because of the MX) and 50,000 IU's per

week of Vitamin D (I tested too low). The inflammation on the above regimen

seemed to improve at first but then started to get a little worse by the end of

2008.  By Feb2009, my Rheumatologist started pushing me to begin monthly

Humira. I outright refused Humira and essentially fired him because he refused

to help me pursue Dr.

McPherson Brown's antibiotic protocol.  Dr. Brown theorized the root cause for

many if not all rheumatic/autoimmue illnesses (including RA) was infection by

one/more organisms called MYCOPLASMA.  Your post indicated you tested positive

for mycoplasma infection and that's what caught my eye. To help you pursue other

avenues, please note the following:

*  Go to www.roadback.org and www.rheumatic.org to learn more about Dr. Browns'

Antibiotic Protocol (A/P).

* Enroll in the Group:  rheumatic to follow all the

stories of those who have followed A/P with success to treat Scleroderma, RA,

and a whole host of  other autoimmune diseases.

* I have not pursued A/P at this time mainly because my Internist would not

prescribe the needed MINOCIN as required under A/P, and I was not having good

luck in finding a doc in my area familiar with Dr. Brown's A/P and would be

willing to work with me. A/P can be tricky and one needs an MD well versed in

this protocol.  However, I am holding A/P as a future option.

* Minocin in the USA is around $8-10.00+ per capsule; most people mail order

from Canada (www.buylowdrugs.com). Get only the pelletized Minocin, 100 mg. Use

only brand name Minocin if possible as the generic (minocycline) has less

success (generics are NOT identical to brand names -- they are only

bioequivalent -- and that is why some people get no results using the less

costly generic).

* I learned about LDN through Dr. Mercola's newsletter and have been reading

the posts for both , low dose naltrexone and

rheumatoidarthritis-low dose naltrexone. I'm also holding LDN as a future option.

* Minocin (in tetracycline family) is bacterioSTATIC, meaning it keeps the

'bugs' from multiplying but does not kill them all.  Under A/P, you must rely on

your own immune system to get rid of any remaining organisms.  The Penicillin

antiobiotic family is baterioCIDAL -- this family of drugs actually kills the

bugs -- but apparently is ineffective on mycoplasma infections.

* Under the LDN protocol, naltrexone BOOSTS one's immune system and thus allows

the body to heal itself - which is how the human body was designed. This boost

may be knocking off any underlying infection that may be causing R/A.

* One person who posts on the rheumatic group has been taking Minocin for

years and recently started LDN (I thinks his name is -- not

sure).  He initially reported positive results while being on A/P and LDN.

* Because I'm having such a problem finding a regular doc familiar with A/P or

LDN, because it takes an average of 8 months to see results on Minocin anyways,

because both protocols seem to create other problems (e.g. yeast infections) and

because the main thrust of each protocol seems to be making sure one has a

healthy immune system, I started seeing a Dr. ph D. Krystosik

(chiropractor/natural medicine practioner in Solon, OH -  see his website:

www.drgoodcarbs.com) at the end-Fed/earlyMar2009. 

* Dr. Krystosik believes the root causes of R/A is hidden food allergies, leaky

gut syndrome (google Dr. Leo Galland), and the ratio of good-to-bad GI bacteria

being in the unhealthy range (aka dysbiosis; in the good range = symbiosis, or

living in balance).

* Dr. K sent my blood sample to Immuno Laboratory in St. sburg, FL to do

an E.L.I.S.A. Blood Test (Enzyme Linked Immunosuppresant Assay). Turns out I'm

allergic to: Amaranth, Cow's Milk, Eggs, Brewer's Yeast, Oatmeal, Sesame, and

any/all foods made using these things (I really miss the butter, sour cream,

pizza).  On Saturday March 14th I learned of these hidden food allergies and

stopped eating them that day.  By the next day, my pain and inflammation were

noticeably better. By that Monday, I was able to reduce my intake of Ibuprofen

from 2 tabs four times per day to 2 tabs twice per day.

* To reduce pain/inflammation, I stopped eating foods to which I am allergic

(this is only temporary)

* I take a ton of vitamins and other OTC supplements, including Milk Thistle to

protect my liver from Rx damage (it works).

* To heal Leaky Gut, I take 1 tablespoon of Aloe Vera Gel (not the liquid) by

Lily of the Desert Two Times per day (20 minutes before a meal or 1 hr 20

minutes after a meal).  Dr. K indicates the tears in the small intestine should

heal in 3-6 months, at which time I can slowly reintroduce those foods to which

I had previously tested positive. The tears in the small intestine allow

allergic food to directly enter the blood stream - thus triggering an immune

response (again, Google Dr. Leo Galland - leaky gut authority).

* To achieve GI bacterial balance, I take OrthoBiotic, a probiotic Once per

day.  Go to www.orthomolecularproducts.com to see ingredients.  This company

only sells to health care professionals.

* To eliminate parasites/yeast, I've been taking Paracid Forte, also by Ortho

Molecular Products. I will discontinue this once I finish this bottle per Dr. K.

* To further reduce pain/inflammation and in addition to Ibuprofen, I take 6

grams Omega 3 fatty acids/day, Turmeric Force (by New Chapter,

www.newchapter.com), Zyflamend (by New Chapter), Flax Seed Oil 4 grams/day,

Grape Seed Extract 100 mgs two times per day, InflammaBlox (Ortho Molecular

Products)

* I am following Dr. K's diet plan (50-75% raw foods; lots of fruits and dark

green veggies); I temporarily stopped eating beef, pork, chicken, lamb because

Dr. K says these kinds of proteins feed inflammation even though I am not

allergic -- and he was right!  The only protein I can eat is cold water fish

like salmon. No shellfish either. I also switched to Decaf Coffee as an article

I read stated that in addition to meat protein, Caffein feeds/promotes

inflammation -- I've notice a difference here, too.

* An article about food allergies stated that protein (like beef) binds to

antigens (foreign entities like bacteria, virus, larger then normal food

particles via leaky gut) and literally spreads the antigens into every nook and

cranny throughout the body.  This is why natural medicine/healing, while good,

takes time to flush out all these hidden antigens which my immune system

attacks.  Dr. K has stated in 6 months to a year, I won't need to take

anything for pain/inflammation. -- We'll see. 

* I am still taking the remainder of a Methotrexate prescription but am slowly

getting of these (started at 20 mgs 1 x per week -- now down to 7.5 mgs 1 x per

week).  Reduction of this Rx has NOT caused an increase in pain/inflammation;

and I wonder if taking it is actually counterproductive as far as the leaky gut

(Rx's, Ibuprofen, and other toxins do the damage).  However, Dr. K said not to

stop cold turkey but rather to listen to my body and slowly reduce Rx over time

which I am doing.

Well I know this is a lot of information but it's all I've got for now.  Keep

the faith and be sure to do your research to learn as much as possible about

alternative ways to deal with R/A before deciding which path to follow.  We are

all different so 'one size fits all' does not apply to dealing with R/A or any

other rheumatic/autoimmune condition.

 

All the best to you.

 

Diane Springob

 

________________________________

From: tpalma1717 <tpalma1717@...>

rheumatoidarthritis-low dose naltrexone

Sent: Monday, June 8, 2009 2:33:57 PM

Subject: [rheumatoidarthritis-low dose naltrexone] No Success so far with LDN

Hi,

I'm 55, female and have had RA since 1994. And tried all sorts of allopathic and

holistic methods to get some relief --- I can't even begin to name them all.

Humira was the only thing that calmed the RA down to a manageable level. But it

is a dangerous drug and I'd love not to have to go back on it.

I've been on LDN in various dosages since approx. mid-January of this year and

have yet to see any benefit (from 1.5---it was like drinking water---then up to

8.0 --- way too much, and have been on 4.5mg for the past 8 weeks). I stopped

taking Humira at the beginning of January and have been having one long and

increasingly painful flare since. Once I started LDN I could no longer go into a

deep and restful sleep (therefore no chance of restorative sleep), the spasms

and cramps in my feet, ankles and calves began almost immediately (at 1.5mg.),

the peeing at night has not really subsided, the pain, stiffness & indescribable

exhaustion has increased as the weeks go by. I've recently begun to get chilly &

freezing cold at night and then get really hot and sweaty when I take my morning

meds (hydrocortisone for adrenal failure and Tylenol). Since I've been on LDN

I've had to increase my dosage of hydrocortisone from 23mg. to 30+mg and now

take five or more

500mg. tablets of Tylenol a day (whereas before I only took one in the

morning.) I am not even semi-functional until approx. 6 pm and that is still

with a feeling of trying to move thru a tsunami.

I've had to have my left knee aspirated twice since January. He injected it with

40 mg. Kenalog (a steroid) --- and for as long as the steroid stayed in my

system was the length of time I felt any relief from the pain, stiffness and

fatigue during this entire LDN trial.

Until the past couple of weeks I was able to feel some relief only during the

early morning hours (beween 3-5:30 am) when I got up to pee. I no longer feel

that relief, only intense pain. Pain and stiffness so severe I can barely get

out of bed to go to the bathroom and it continues on throughout the day. It now

includes feeling cold and chilly. The Ra has expanded to include joints I never

had problems with before. I now have it all over my body: elbows, wrists, hands,

hips, back, knees, ankles and feet. I feel as if I'm being tortured.

Some have suggested that a virus or Candida may be to blame. I don't believe I

have Candida as I was not suffering from it prior to LDN and I keep away from

carbs. I have food allergies and stay away from the things I cannot eat. In

fact, I've lost weight (I cannot afford to lose) while on LDN (I've lost my

appetite --- the pain and fatigue are not conducive to eating for me). I had

been diagnosed with mycoplasma fermentens some fifteen years ago and, from what

I understand, that is implicated in the cause of RA. I don't know if the LDN has

made it proliferate. I'm at my wit's end with LDN; I cannot continue in this

state of intense pain. It is also making me quite depressed (which doesn't help

one's immune sysem).

Any suggestions, ideas, advice?

Thank you,

Tatiana