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strongmama
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| Joined: | Sat Dec 16th, 2006 |
| Location: | Gardner, Kansas USA |
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Posted: Sat Dec 16th, 2006 17:02 |
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I just came across this site. We haven't done/can't afford testing.
Our daughter has chronic anterior bilateral uveitis.
arthralgias
possible chronic arthritis
sausage digit type toes
ANA of 1:320 in a homogenous pattern
cbc normal
sedimentation rate normal
elctrolyte and liver function test normal
angiotensin converting enzyme lightly elevated at 58 with a normal range being 7-46
P-ANCA and C-ANCA Negative
HLAB-27 Negative
Lyme antibodies negative
Toxocara Negative
Toxoplasma Negative
She is on pred forte and atropine eye drops for the serious vision threatening eye disease. We are trying to get her to an occular immunologist
She has frequent constipation.
she has been taking on and off the following supplements/treatments:
using our far infared/regular heavenly heat sauna
hylands homeopathic arthritis formula
homeopathic bioplasma cell salts
nordic naturals cod liver oil with added vitamin a and d 1-3 tsp daily
1000 mg liposomal vit C
flaxseed oil 1-3 tsp daily
natural factors learning factors vitamin shake, 1 scoop a day
curcumin/turmeric 200mg one to three times a day
shake made from raw whey homemade from raw cow milk
gluten and casein free diet, cheating with houstons enzymes
specific carbohydrate diet (right before her severe uveitis flare she was on this diet the previous 3 months)
Adding wheat and casein back into diet (since september to dec 2006)
We just took gluten back out of her diet 2 days ago.
super querciten with bromeilan one time a day
selineum
new beginnings calcium/magnesium supplement childrens chewable 333mg cal/50 mg mag/40 mg glycine
porters milk cure diet for 2 weeks with raw goat milk
raw colostral kefired goat milk shakes, one to three shakes a day
zinc (discontinued)
psyllium husks
castor oil packs (for constipation)
I am getting the gist here that the vitamin D and some other things we are doing might be bad for inflammation. Which of these should we continue, and which of these should we stop? I read the introduction to the marshall protocol, but wonder how to get a doc to implement it, and how it will interact with what we are already doing or plan to do, and if our plans need to adjust? What supplements, if any are safe then? I don't want to boost her immune system. I get that much.
I have scoured the internet for possible treatment measures that migh help uveitis, what do you think of these treatments and are they compatable with the marshall protocol?
immunomodulatory therapy (she is taking an angel flight to St. Louis to see a occular immunologist next week) They might use MTX, or remicade or the like
Next week, we were going to take her to an allergist and get a special allergy shot called LDA, which uses tiny amounts of bacteria and a process called molecular mimicry to turn off the T cells attacking the wrong tissue.
serrapeptase and nattokinase enzyme based therapy actually derived from bacteria
we read on an national arthritis trust website about a antimicrobial cure for arthritis, but can't find a local doc to implement it.
dmsa/ala chelation, low dose 1/4 mg to 1 mg per lb of body weight, requires high doses of vitamins and minerals to do protocol
Hulda clarks clarkia treatment for parasites/zapper devises
Valtrex or natural antivirals such as olive leaf extract or laurdicin, monolaurin
Brainchild nutritional vitamins/supplements
High dose vitamin C IV's as an osmoic agent; enhances hyaluronic acid and reduces it's viscosity
Naturopathic medicine
retesting for lymes from a more accurate testing facility
MSM
Glucosamine
White willow
licorice herb
boswellia herb
ginger root
devil's claw
reverse osmosis system for the whole house incase she's reacting to the flouride in the water (our city water is flouridated)
Revision formula containing: bupleurem,dong quai, white peoni, poria, atractylodes, licorice, tree peony, ginger, gardenia, coleus, ginko biloba, milk thistle, dandilion, eyebright, bilberry, heolen.
MSM eyedrops from ultra botanicals
vit Mb12
melatonin
coenzymeQ10
forskolin
salvia miltiorhiza
vitamins that reduce free radicals
red clover
As you can see it is an overwhelming list to sort out....along with all of the new information I am reading on this site.
Shelly
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parent of jra/uveitis child
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Aussie Barb
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Posted: Sat Dec 16th, 2006 18:10 |
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Shelly
Welcome to MP.com and Thank you for posting.. There is hope for you here. I will post some Links to Information for you and others will reply to you with personal experience also. The Links will be here for you in your own thread, so you dont have to go looking for them. Take your time to read the Information. we can give you more information as time goes on and you have more questions, but these are just the basics for now.
All of those symptoms are caused by the disease. see Hypervitaminosis-D Symptoms
Children on MP has Information for parents who have questions about using the Marshall Protocol with their children.
We have an Opthalmologist on our Drs List who is familiar with MP. REQUEST FOR DOCTORS LIST (click here) Please READ INSTRUCTIONS first.. thank you.. and your own Dr may even prescribe the MP.
to see Information re Standard treatments such as MTX and Remicade etcc, scroll down from that link..
ARTHRITIS and Th1 inflammation : has links to Member experiences.
EYE INFLAMMATION and Th1 diseases : see the first post re Uveitis and Information re a Dr: also scroll to links to Member experiences.
Dr Marshall wrote: "The MP is a curative therapy, we kill the bacteria underlying the disease process so that the patient is returned to full health. We are not talking about relieving the symptoms so that the patient can lurch from day to day.
Generally, anything you add to the MP tends to affect the very delicate balance which an MP patient sets up, a balance between the rate of killing the pathogens and the level of symptoms which the patient can handle." <<
With that in mind the supplements list and treatments list is easy to sort.. and with the money saved the D tests will be affordable. Why do I have to stop taking supplements? has links within.
Allergy shots: (immunotherapy) stimulate the immune system. They are to be avoided while on the Marshall Protocol.
Why has there been a sharp rise in the incidence of Th1 inflammatory diseases? see re vaccines.
Which diagnostic tests do I need?
What do my lab tests mean?
I'm constipated. What should I do? may have more tips.
THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS ON PERSONS WITH TH1 INFLAMMATORY DISEASE Incident Radiation Tutorial All light- infrared, visible and ultraviolet
THE IMPORTANCE OF AVOIDING VITAMIN D & FOLIC ACID and refined sugar, excess carbohydrates
Checklist: basic links for MP
Take your time. Let us know here at your own personal thread if you have any questions. all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Julia
Member in Phase 3
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Posted: Sat Dec 16th, 2006 18:19 |
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Hi Shelly Strongmama,
That's some list for a very little girl! My heart goes out to you, mama to mama.
I just want to share that I was completely cured of severe uveitis by the very first stages of the Marshall Protocol. In fact I hadn't even started the full MP with Benicar when my eyes began to heal quite dramatically, just on minocycline.
I notice your daughter is on cod liver oil. I suspect cod liver oil was a major cause in bringing my inflammatory disease to the point where normal life was no longer possible. It's just got too much vitamin D in it.
Now after a couple of years on the full MP, so many lifelong conditions have resolved! You've come to the right place. This website is a licence to hope.
 Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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tickbite
Member in Phase 2/3
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Posted: Sat Dec 16th, 2006 20:01 |
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Shelly,
Sorry, I can't help but write. Frankly, the "bacterial derived" treatments are dangerous. I wouldn't let them near my kid with 100 foot pole. Especially with a child like yours.
"uses tiny amounts of bacteria and a process called molecular mimicry to turn off the T cells attacking the wrong tissue."
You'll come to realize with research on this site that attacking the wrong tissue, is, well.........wrong. IMO, if you add more bacterial/viral soup to your 6 year old, it's going to get worse. Way worse. Gosh that scares me that people are doing this. I'm definitely not giving advice, because it's not my place. But i would take my child off of all of the supplements! and the far infrared treatment! Get her off the vit D, folic acid, reduce exposure to pollution, etc...research this site more. Oh, and looking for Lyme antibodies IMO is pointless and like looking for needles in a hay stack. Even if you find antibodies it will not tell you the whole picture.
Anyway, i'm so sorry you have to go through this. I really hope for the best for you and your family.
Good luck ~ Greg
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"Lyme","CFS", Meningitis
Phase3 8-2-07, MP on hold 11/2007
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Aunt Diana
Moderator
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Posted: Sat Dec 16th, 2006 22:09 |
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Shelly,
I feel for you and your poor little girl...and want to encourage you to listen to the people on this site.
I have had Lyme disease for 18 years.... and I have had dozens of Lyme tests.....they always came out negative. My belief is they do more harm because they simply give the doctor one more reason to rule out Lyme. They a total waste of time and money.
But, even more importantly....it doesn't even matter because if she has a TH1 illness, and there are many that fall into this category, she will respond to this protocol. I have been on it for a year and many of my symptoms have completely disappeared....I still have a ways to go yet but expect to be perfectly normal within a few years.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Foundation Staff
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Posted: Sat Dec 16th, 2006 22:28 |
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Welcome to our study website. This information in the following links should be helpful to you:
Remicade (infliximab)
Methotrexate
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jrfoutin
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Posted: Sat Dec 16th, 2006 23:08 |
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Shelly,
Aussie Barb and Meg Mangin gave you some very good links. Please read them.
Many of the self-help supplements and remedies you have listed are something to look at carefully. Even the curcumin and tumeric is problematic.
Why do I have to stop taking supplements?
D is a steroid. Vitamins, shakes, nutrient mixes, cod liver oil, flax seed, and infrared are sources to check that nutritional label. Sometimes labels list an ingredient you might not suspect, so do read info from this site carefully.
I can't imagine what it would be like to double up on any of these for me, but a little girl, it must be overwhelming.
Glad you found this site.--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Christina
Member in Phase 3
| Joined: | Wed Dec 7th, 2005 |
| Location: | St. Louis, MO, USA |
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Posted: Sun Dec 17th, 2006 06:04 |
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Hi Shelly,
I began having RA symptoms when I was 14 years old and I even had the chief rheumatologist at Washington University (St. Louis) tell me he believed I actually have JRA. I've had it now for over twenty years.
I have to tell you, my RA got worse after I started taking supplements. Maybe not immediately but it all caught up eventually. During the first eight years of having RA I went in and out of remission on my own. At that time I only took asprin and ibuprofen as the other big immune suppressants were not in existence. Little did I know that was actually a blessing. Once I finally sought help from a rheumatologist when I was 22 and he prescribed prednisone and other immune suppresants I've never recovered since. I only got worse and worse since that day forward. Now I know it had everything to do with all that immune suppression.
In my opinion (as medically unqualified as it may be) I would quit taking all the supplements and definitely avoid all sources of vitamin D. I used to take all sorts of supplements to combat this disease and I only ended up getting worse. I'm only nine months into the protocol but I can tell you I am responding. I feel better today than I did when I started. I have a long way to go, because not only is this protocol lengthy, I've been sick for A LONG time. I do believe it is worth it in the end for a full recovery as opposed to symptom suppression which is all I have been doing for the last 13 years. Believe me, it all catches up to you.
If you have specific JRA questions I'd be happy to speak with you, just send me a private message. Please read everything on this website. I know it can be overwhelming but it is so very important, especially since your daughter and the disease is young. According to the success stories, the earlier you catch it the sooner you recover. I wish MP had existed in 1985.
I too have a six year old daughter and I can tell you without hesitation that if she displayed any Th1 illness symptoms like RA, I'd start her on the MP. It's relatively safe and you have nothing to lose. All other therapies just cover up the symptoms. Why do that when you can cure it?
Good luck to you,
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Ival
Moderator
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Posted: Sun Dec 17th, 2006 17:57 |
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Hi Shelly
I found this site the same way you did I was looking for some answers to what was going on that would cause rheumatoid arthritis. I don’t think I turned my computer off for a month after I found this site reading all the information really made me understand what was going on.
The article on molecular mimicry I think is some excellent research. I do think a lot of that is going on in all of these TH1 diseases but it is not the cause it is an effect. The cause is cell wall deficient bacteria have become parasites in our white blood cells. The very cells that are supposed to kill them.
Take your time and read the information here and once you understand the concept. Go back and reread the article on molecular mimicry. Everywhere the author asked why or you see unknown mechanism yet to be discovered. Replace those words with 'because the white blood cells have a cell wall deficient bacteria parasites in them'. I think you’ll get your answer if this protocol is right for your daughter.
Good luck Ival
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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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John McDonald
Foundation Director
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Posted: Sun Dec 17th, 2006 19:17 |
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Hello Shelly,
My heart too aches to hear of your 6 year old's RA. How sad. But this is the place for answers. My RA is vastly improved now after 1 year on the MP and the first thing to improve was an infection in my eyes. The rheumatologists are wrong, it is not an immune system dysfunction. Your daughter's immune system is desperately trying to clear an infection, and the immune suppressing drugs just make it worse. Seeing is believing. This treatment works.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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strongmama
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Posted: Sun Dec 17th, 2006 22:03 |
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Christina- our daughter may be taking an angel flight to St. Louis on Dec 27-28th to see an occular immunologist, Dr. Van Gelder.
Aussie Barb-OK. I just finished reading all of the links. I guess we can keep the water kefir and probiotics which I forgot to mention.
What about raw milk (non pasturized-no additives no added vit a or d)? What about fermented, kefired milk? say 1/2 a cup in a shake 1 to 3 times a day or using for cooking. fermenting predigests the proteins, raises vitamin content by 10%, and adds probiotics.
What about colostrum, from goats with arthritis? My daughter's kefir shakes have been made from the kefired milk of a goat with CAE, basically goat encephalitis, which effects goats like arthritis. We've added colostrum from a non CAE goat. Theres no vitamin D added. Next spring I have the colostrum from this CAE goat ordered.
On the eyeglasses, will she need two, one for outside and one for inside? I am not understanding which ratings our daughter would need and how they differ?
So...even with special glasses on you shouldn't watch too much tv or computer?
I understand the whole only going out at night restictions.
until further notice, we are stopping the curcumin, infared sauna, cod liver oil, flax oil. We are out of the quercetan w/ bromelian, stopping adding the vitamins to the shakes. What about the regular heated sauna? I wonder, we have traditional heat sauna too and can turn the far infared off.
So I still don't know if it is ok to continue her calcium citrate 333 mg/magnesium glycinate 50 mg/glycine 40mg chewable (new beginnings) also containing cellulose, xylitol, fructose, beta carotene, natural orange-vanilla flavor, and vegetable stearate.
She only eats the whites of eggs anyway. We have some ogran egg replacer. tricky to watch out for eggs though, unless everything is made from scratch.
I signed up for doctor referrals.
is pure maple syrup allowed?
it seems like this diet would be compatable or similar to the specific carbohydrate diet, which we've done before
Our daughter had chicken pox which may have effected or worsened her uveitis. she didn't have eye pain or band keratopathy until during the chicken pox and a week after. Then she was diagnosed.
What if it is a virus, along with bacteria, causing the inflammation? How does the marshall protocol adress viruses?
Downside of this therapy seems like it would be if the person's inflammation had several combined causes, only one being bacteria, it would no be addressing all of the causes. Is there anyone that the Marshall protocol does not work for?
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parent of jra/uveitis child
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Aussie Barb
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Posted: Sun Dec 17th, 2006 22:40 |
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Thank you Shelly
I will reply to your Qs. It is a big shift to make to change the diet and supplements etc, but as Members are telling you it is successful and worth throwing the supplements away..
I have sent you the contact details of the NY Opthalmologist ... which, if you can manage it would be our recommendation unless your Dr is willing to work with the MP to reach the goal of no inflammation. see EYE INFLAMMATION and Th1 diseases for information.
Will the immunopathological response cause increased eye inflammation?
What is an ocular immunologist?
says "An ocular immunologist is an ophthalmologist (uveitis specialist) who has specifically trained both in ophthalmology (subspecialized in uveitis) and in internal medicine (immunology), and is knowledgeable and experienced in the prescribing and monitoring of immunomodulatory therapy.
Medications (NSAIDs, steroids, steroid-sparing agents ~ immunomodulators) are given to reach our goal of no inflammation." <<<
Milk and Calcium see: Calcium requirements for children
colostrum is considered a supplement..
Glasses: NoIRs 2% outdoor. 10% indoor and optional 40% extras.
can use glasses to watch TV and use computer along with switch down contrast and brightness.
Heat can increase immune response in some.. moderation is recommended.
Should I take vitamins?
egg whites are used by some here.
check labels of egg replacers for added D or call the manufacturer.
Will the Marshall Protocol treat co-infections?
maple syrup is for?: see
FOOD TIPS Helpful hints
Dairy Products
Carbohydrates
THE IMPORTANCE OF AVOIDING VITAMIN D & FOLIC ACID
and refined sugar, excess carbohydrates
Thank you, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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strongmama
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Posted: Sun Dec 17th, 2006 22:44 |
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Ival! I know! I recognize the similarity that this might be treating the actual cause of the molecular mimicry. I had previously read the arthritis trust website also, and tried to find a doctor who used their methods of antibiotics and couldn't find one locally...it sounds like this treatment is along the same lines with the vit d stuff added.
We took our daughter to a applied kineseologist last week who said no dairy, no gluten and no vitamin d......and that the source of her inflammation was her large intestine. I started avoiding gluten right away, but it's hard to stop the milk with 5 gallons of kefir in the fridge and all that homemade whey...which, I guess i won't give her the whey or is it ok? argh...if you only knew how hard that was to make, left with 1 cup of kefir on the counter for 3-4 days followed by straining the curd from whey from raw organic cow milk (unpasturized, no additives).
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parent of jra/uveitis child
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strongmama
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Posted: Sun Dec 17th, 2006 23:14 |
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So from what I understand for children who must have calcium for growing bones we can calcium supplement and use raw upasturized un fortified milk in the diet to the rda of D only or is it the rda of calcium only? and nothing over the rda.
The raw milk, when kefired is very tart. It takes a couple tablespoons of maple syrup to make it palatable along with a frozen banana and some ice. We have been using honey as a sweetenter for other things, I see that's not allowed..argh. We sometimes add maple syrup our homemade spagetti sauce.
We were making wheat bread with a sourdough starter, we sweetened the bread with maple syrup or honey. This is a yeast free bread. You can't make gluten free breads with a sourdough starter though
What do you think of the new research being done on oxalates, like the no oxalate diets? I say because our daughter loves almond milk but we took it out of the diet because of oxalates.
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parent of jra/uveitis child
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strongmama
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Posted: Sun Dec 17th, 2006 23:20 |
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Is the reason why you prefer the occular immunologist in new york because the herx reaction initially increases the inflammation during the treatment?
Isn't this a big concern? Has anyone ever gone blind or lost vision from a severe herx reaction when beginning this treatment?
Then, of course we would start this treatment, she could get a flare, and then the doc will have her on mtx or immunosuppressants so fast our heads will spin.
Our daughter already has so much scarring that if she gets any more at all she will have vision loss. We have no room for error.
It is really encouraging to read the stories of how the eye inflammation goes first though.
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parent of jra/uveitis child
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Aussie Barb
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Posted: Sun Dec 17th, 2006 23:31 |
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Thanks Shelly
Re eyes: The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
and as you can see in the above Eye links that is achieved with a Dr willing to work with the MP to reach the goal of achieving lowest possible inflammation in conjunction with using steroid or other drops etc if it is necessary while achieving healing as you have seen..
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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strongmama
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Posted: Sun Dec 17th, 2006 23:35 |
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| I know they sell powdered colostrum as a supplement, but how can raw goat colostrum be considered a supplement? A supplement is over the counter, but if the colostrum comes straight from the goat on day 2 after they have the baby goats, it seems like its more of a whole food, it is just a little thicker yellower looking milk. no additives, no fortification.
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parent of jra/uveitis child
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strongmama
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Posted: Sun Dec 17th, 2006 23:43 |
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Does anyone know if Dr. Van Gelder in St. Louis (occular immunologist) works with the MP?
So basically, we won't be able to do this treatment unless we are using rhuematologists and opthomologists who will work with the marshall protocol, otherwise they may subscribe drugs in conflict the treatment.
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parent of jra/uveitis child
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Aussie Barb
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Posted: Sun Dec 17th, 2006 23:46 |
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Shelly
It takes some time to absorb the information and to understand why and how the MP works without the use of all these extras, but it is necessary to leave these all behind to be successful. .
see the 2nd post in the FAQ Why do I have to stop taking supplements? addresses:
The Dietary Supplement Health and Education Act defines dietary supplements.
Dr Marshall wrote: "The MP is a curative therapy, we kill the bacteria underlying the disease process so that the patient is returned to full health. Generally, anything you add to the MP tends to affect the very delicate balance which an MP patient sets up, a balance between the rate of killing the pathogens and the level of symptoms which the patient can handle."
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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strongmama
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Posted: Mon Dec 18th, 2006 00:06 |
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I see. It is difficult to "get it" when it comes to the beloved supplements. I have seen our child with aspergers improve greatly through the andy cutler chelation protocol this year with fistfuls of supplements, and low dose ala/dmsa chelation. I know that supplements do have a place, just maybe not a place with autoimmune disease. I find the claim on this site that nobody gets well with supplements to may be true when it comes to autoimmune, but they are curing autism right now with supplements, through the DAN protocol, defeat autism now. However, that said, autoimmune disease seems to be quite the weird thing, it's opposite world. Heck, you'd think we ought to tear down the immune system however we could and just live as unhealthily as possible and we'd be miles ahead. Well you're correct that with all the money saved buying supplements, we should be able to manage the Vit D tests. 
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parent of jra/uveitis child
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