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I received my blood results back from the lab in New Zealand that has the proprietary method of culturing out mycobacterium from blood. This was their concluding remarks from their finding showing I did indeed have mycobacterium type 2 in my scleroderma blood. I also had been off antibiotics for at least 6 months, and on the Marshall Protocol using only an ARB (benicar q4-6).
The overall appearances are similar to those seen in a sample from a Crohn’s disease patient who may be on sub- optimal therapy and not in a “flareup” This sample is from a patient with the diagnosis of scleroderma. The 7DN medium, which we are evaluating as a biomarker, was moderately positive and showed some variant forms similar to those described as “form 2 mycobacteria”. We do see these in IBD, and not in healthy control patients. There are therefore aspects of the laboratory workup that argue for further work, and to that end I have sub-cultured the 7DN medium with an aim to grow sufficient organisms for DNA extraction and subsequent molecular analysis. I noted the appearance of “endospore-like” variant forms. This is a reference to a similar type of cell.
Most of this lab’s research has been on Crohn’s disease patients and finding positive results on them as well. Dr. Borody, a GI doctor in Australia has “cured” or put into remission with the anti-MAP (mycobacterium avian paratuberculosis) protocol using 5 antibiotics together over 2 years with great success. They’ve found positive results with the sarcoidosis patients and I know of a sarc patient (biomedical engineer from Australia) from the Marshall Protocol website that had stage 4 – end stage cardiac sarcoidosis who was on the Marshall Protocol. With his positive mycobacterium test, he was able to get a doctor to prescribe the anti-MAP and after 2 years on this protocol, his PET scan of his heart is completely normal.
I recently had a echo done and today I’m having a PFT done today. I’ve been feeling pretty badly with heart/lung symptoms.
John Aitken, the lab’s owner said that the NOD2 gene mutation is common in autoimmune disease.
Not sure where to go with this info next. I still feel like this disease has a pathogenic etiology and these findings reaffirm my feelings.
Martha
Here is the link for this man and his laboratory in NZhttps://www.stuff.co.nz/national/health/80201367/christchurch-microbiologist-may-have-cracked-crohns-disease?fbclid=IwAR2DgJCKqbh_tgV8jGeRfgtlvSmisp20y_bNFl4gl21BgJ9DjnRZymJL2Cc
Martina,
this is fascinating. how did you go about getting this test ordered? do you live in new Zealand also?Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinI found out about it from a biomedical engineer from Australia with end stage cardiac sarcoidosis who had previously been on the Marshall Protocol Boards. I also have been using the Marshall Protocol for years (benicar q4-6) and done fairly well on it. He had quit the MP over 2 years ago because he was deteriorating and in end stage of his disease. He found out about the test and anti-MAP (anti-para avium paratuberculosis) protocol from the GI doc, Dr. Thomas Borody in Australia having remarkable success with it for Crohn’s disease patients, nearly “curing” or achieving remission for all (over a 1,000 patients). After having a positive test result from his blood with mycobacterium, he was able to get on the anti-MAP and after 2 years, he’s “cured”. His recent PET scan of his heart was “normal” after 2 years on the protocol. The lab owner said that they’ve mostly done work and testing with Crohn’s Disease but they believe most AI disease has mycobacterium involvement and the AI disease manifests depending on your genetics. He said that the NOD2 genetic mutation is a biomarker in Crohn’s and sarcoidosis but could also be in other AI diseases.
I live in Southern Utah but had my doctor write the order to have the blood drawn and shipped it to NZ. It wasn’t cheap to ship, over $100 because I had to send it quickly (3days) for better results. The blood test was $250 and it took over a month to grow the culture with different mediums…
The director of the lab said that they had a few contacts in the USA and the testing was gaining traction. UCLA has been sending them samples.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFMartina, it is written that Bonicar is used for hypertension. Did you have hypertension? Also Marshal’s protocol recommends avoiding vitamin D. Is it good for us?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHi Linda;
My sister who has Lupus and MCTD had to use MP .Lupies are very sensitive to antibiotics and that is the only protocol where you use extremely low doses and benicar.She was in remission within a year and now only uses benicar to keep the remission.I also used benicar but not in such a high dose as MP and it did wonders.My BP is normally low and it did lower it a bit but was stable within a few months.You have to have your vitD test that covers the regular D3 and D1,25.If the latter is high benicar will bring it down in conjunction with antibiotics.If 1,25 is high it is a sighn of infection
https://mpkb.org/home/tests/125d
https://mpkb.org/home/lifestyle/light/photosensitivity
https://www.chronicillnessrecovery.org/index.php?option=com_content&view=article&id=177Linda,
I don’t take the benicar q4-6 for it’s anti hypertensive action, although that can’t hurt with collagen vascular disease. I’ve taken it as I’ve followed the MP over the years and Benicar (Olemetec) has helped immensely at palliating many of my symptoms. I never ate a lot of Vitamin D foods per the MP guidelines (Vitamin D is not a vitamin, it’s a secosteroid) but I don’t worry about it as much now as I’ve been eating keto/carnivore for 1.5 years now. I don’t supplement or go out of my way to eat Vitamin D foods. With the MP, you also cycle in much lower doses of antibiotics. I’ll probably never give up benicar in this lifetime. As for Vitamin D, I’m just not sure….Lynne, Still I cannot believe that high 1.25 Vit. D indicates infection. I’ve never had high 1.25 D and all the people with a chronic disease I know don’t have it. Strange. Martina, my BP is very low /usually 60/90/, so is it safe to take Bonicar?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHi Linda;
You might want to post that question on the MP board http://www.mpkb.orgLinda, I’ve always had low bp as well. The benicar never lowered it that much more (it’s not a great BP med) and I eat salt liberally and drink a lot of water. Benicar (Olemecip, Olemetec) is renal protective and it’s the same category of drug (ARB angiotensin receptor blocker) you see on the advertisements for CHF I don’t worry about my D-125 much anymore.
Martina, what symptoms has Benicar helped you with, if you can reveal it?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLinda,
About 15 years ago, even before I got the diagnosis of SD/MCTD from the Harvard doctor, my GP gave me a script for Minocin 100 mg BID. It was helping my aches and pains and my skin stay soft and normal. But after 2 years, I started having respiratory symptoms that concerned me. Around that same time, some of the people on this board were starting to add the Marshall Protocol into their antibiotic regimen. The addition of the benicar (I’ve used Olemecip/Olmetec) made those symptoms go away. My doctor didn’t go along/understand Marshall’s theory that the VDR was responsible for our immune systems being unable to eradicate the pleomorphic L forms of bacteria hiding in our WBC’s. He just knew that the addition of the ARB was a safe drug and might help with BP problems stemming from collagen vascular disease. So I’ve always been able to get the benicar script fairly easily as it’s such a safe drug and organ protective. Years ago my insurance stopped paying for it so I had to got resourceful. I remember a couple of scleroderma members on this board used ACE inhibitors to keep their BP down and help to protect their kidneys, etc. But the ACE inhibitor’s made me cough which can be an adverse side effect.
Interestingly, after adding the benicar to the antibiotics, I became pregnant 3 months later at 46 y/o. I hadn’t been pregnant for 16 years (not using BC because I thought I was infertile) and some of those years taking just Minocin. Obviously I wasn’t trying to become pregnant at 46…but the ARB must have normalized my hormones and somehow been beneficial to my system because I became pregnant so late in life. And, this is probably TMI 😉 but I only had had sex once that month!
Anyways, I was far from cured with the addition of Benicar, but I’m much better than without it. And over on the MP boards, they now are deep into EMF radiation waves being the reason some aren’t fully healing. They are probably onto something but I’m not going to build a Faraday cage and sleep in it or make my clothing from the EMF proof clothing. It just is too much for me at this time. When they get if figured out, I’ll jump on board and abstain from yet one more thing…
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