Help – 15 months in…

[PhilC]

Hi,

rushnik wrote:

I also added LDN and a supplement program…

When did you start the LDN, and what dose are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Spiffy]

I guess we all need to have to these tests run every so often. The symptoms look very much like the symptoms that made many of us begin the minocin therapy anyway.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[rushnik]

Hi Phil,

I really do believe that the way LDN works makes sense and I like the idea of the provoked natural response. I started with liquid 1mg for two weeks, then added 0.5mg every week until I reached 3mg. I never aimed to go above this level because in the reading I did, it does seem like anything above 3mg can be counter-productive (I know the ‘recommended’ dose is 4.5mg). At first I found that I was having vivid dreams but that went away quickly and now I notice no side-effects at all.

I noticed a difference in my energy almost as soon as I introduced it. Can’t explain the difference it made but it made me feel much less lethargic and more mentally enthusiastic about life again…

[Linda L]

Phil,
It’s a very good article. Does it mean that DIL is quite common after taking Minocycline?
Linda L

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 heterozygous

[Maz]

Linda L wrote:

Phil,
It’s a very good article. Does it mean that DIL is quite common after taking Minocycline?
Linda L

Hi Linda,

Check out FAQ #17, here, for some info on DILE and rates of prevalence as stated by the American College of Osteopathic Dermatology:

https://www.roadback.org/faqs/

[Linda L]

Thank you Maz. Is it possible that DILE happens more often to the people who are homo- or heterozygous? Are you one of them?
Linda L

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 heterozygous

[Spiffy]

Linda, I would possibly think it had more to do with your HLA pattern. Those of us who were unlucky enough to inherit the DR4 autoimmune gene I am going to guess get DILE more so than other groups. That is not just with Mino but other RA drugs as well. If I could give back one of my mutations, that one would certainly be it. I also feel that just as we have discovered genes for celiac such as the DQ8 or DQ2…. One day they will know more about the triggers for DR4. What if we had not figured out gluten? Doctors would still be saying those that carry the 2 or 8 just develop these symptoms. Their bodies simply begin attacking self tissues. I feel it is the same for DR4. Most people probably live their entire life with DR4 and never know it. For example, no one else in my family has ever had RA, but obviously I would not be the first to carry it. I am the first to have the 31 and 34 bands for Lyme. I am the first in my family to live in the NE. Maybe it was the genetics between my mom and dad. Maybe that was the first time a Celiac gene had been paired with the DR4. There is no way to know. But one things for sure, I was a living bullseye for it. Everything that could lead to RA I have. I am just thankful I was 44 when my world crashed and not younger. I have to be thankful. I still wish I could have grown older more gracefully, but I will just keep fighting it. I am doing okay now. Some days more fatigue than others. I believe my small finger joints are beginning to feel it ever so slightly. Still baby my left ankle even though it is doing very well at the moment. Beginning to feel some small joints on my right foot very slightly. Slight hip stiffness upon standing after sitting for awhile, especially since I started walking 2 miles most days. I am in it for the long haul, but I will keep chugging. One thing I have noticed….an area on both my hands had gotten white, tight, and shiny as well as my face being pulled tight and mask like before my diet change and months of mino last year. This has since gone away. This makes me happy. What is weird though, is the skin on my hands that replaced it came back so wrinkly. That is okay. I will take it. But it looks like an artist cross hatched me. I will always wonder what helped me the most….antibiotics or diet change. I am considering the LEAP MRT testing for more food allergies. Another 500 bucks.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Cathlo]

Hi NIkki,

Sorry to read this. I would definitely email Dr S in Iowa – or at least find someone that knows more about antibiotic protocol than Dr E – much as he is helpful, he has never convinced me that he has an indepth knowledge of it. However, he does do IV minocine, which if I remember rightly from The New Arthritis Breakthrough, was Dr Brown’s first point of action when people were suffering.
Do get in touch if i can help in any way
x

2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.

[rushnik]

Hi Cathlo,

Thanks for replying.. Yes I get that sense from DR E also so am reticent to go back. I e-mailed Dr S last year but I never got a response so I assumed he was too busy. I guess I can try again… How have you been?

N.

[Cathlo]

There must be someone else other than Dr S who is an expert – and you could email (if he is not replying) – any suggestions anyone…?? or is Dr S so much better/more experienced than anyone? We – doctors – are a bit behind the times here in the UK, and there are very few prescribing AP/or with great knowledge of it… crazy as it is one of the few places where minocin is affordable by the sounds of it!
I am doing ok… haven’t seen Dr E for a while, and came off AP a a few months ago, to give my body a break, and concentrate on diet, as it has such an affect for me. Will probably go back on it, but can’t say I am missing it at the moment. x

2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.

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