Important NY Times Article!

[Anonymous]

@wib411 wrote:

So far, 8 months of AP have shown no results but I am still hoping.

I hope you get better with this protocol!

[Trudi]

@wib411 wrote:

My thought is that a strong antibiotic, CIPRO, unbalanced my biome and I developed RA as a result.

I wonder if you have received damage from taking Cipro, which is called “floxing.” I wrote about it here–
https://www.roadback.org/forum/viewtopic.php?f=1&t=7460&p=62055
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

@Trudi wrote:

@wib411 wrote:

My thought is that a strong antibiotic, CIPRO, unbalanced my biome and I developed RA as a result.

I wonder if you have received damage from taking Cipro, which is called “floxing.” I wrote about it here–
https://www.roadback.org/forum/viewtopic.php?f=1&t=7460&p=62055
Take care,
Trudi

Trudi, this is a very good point….the fluoroquinolones have black box warnings for tendon rupture, which speaks to their toxicity in some folks. A good friend of mine wound up with plantar fasciitis after a round of cipro for a UTI. This is an abx that is used by LLMDs for bartonella, which also loves to hole up in tendons. I have wondered if this reaction could even be a kind of mega-herx or if it’s purely a chemical toxic reaction. The risks are higher for over 60s and anyone using corticosteroids. Would be nice to have some research on this stuff, eh?

[lynnie_sydney]

Interestingly, the addition of cipro in May last year – albeit it pulsed and in very small amounts (see signature line) – has made a huge positive difference to my wellbeing. I was feeling pretty lousy between late Jan and May last year. On testing,what was picked up as active in my system was a re-activation of CPn and one of the meningococci (!) following a huge period of physical overload. No wonder I was feeling like I was moving through honey! Cipro has been a lifesaver for me this last year and, hopefully, I wont need to be on it for too long. But have had no side effect problems from it thus far.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Trudi]

@lynnie_sydney wrote:

Interestingly, the addition of cipro in May last year – albeit it pulsed and in very small amounts (see signature line) – has made a huge positive difference to my wellbeing…Cipro has been a lifesaver for me this last year and, hopefully, I wont need to be on it for too long. But have had no side effect problems from it thus far.

Hi Lynnie–
I was on Cipro in the early ’90’s and agree it was a lifesaver for me too. However, from what I have researched it may have laid the foundation for future problems. As I described in my earlier post, I started taking Cat’s Claw in place of the antibiotics that I just could not tolerate. Cat’s Claw contains quinovic acid, the same that Cipro is made from. In hindsight, the doctor should have guessed that something was way wrong when I deteriorated over the year’s time while on it. I kept on thinking it was herxing– 🙁 –a very long herx.

There is no way to be sure that Cipro/Cat’s Claw caused the shape I am in. My chiropractor confirms that my ligaments and tendons are a mess; not until I saw the NewsHour segment did I start to put 2 and 2 together. Time is now my healer–hope it does not take the 5 to 10 years as I’ve read–or even permanent–that would be awful!

Hi Maz–
Remember the testing I did with the Bartonella–who knows, maybe that is an underlying player, even though I tested negative. While I was seeing the chiropractor, I did go on low-dose hydrocortisone and got worse. Not until I did a whole lot of research, last fall, did I read about what could exacerbate the “floxing” condition. Enough of it rang a bell.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[reemoshe]

Hello Trudi
Yes, My husband and I read this same article and were elated to finally see an article that deals with RA and alternate therapies that helped little Shepard from his pain.
Thanks for sharing it with the community.

[wib411]

Trudi, Thanks for your comment. Enbrel stabilized my RA for 5 years. Somewhere in that time, I was on another course of Cipro, and I did develop three serious side effects: intense itching, insomnia and tendenitis. I had read the literature, and stopped taking it. Those side effects stopped almost immediately. Long term, I am not so sure. The prescribing doc’s office claimed they had never had a patient experience that. I did an adverse reaction report to the FDA. The Human Biome research now underway should help turn the tide against not well thought out use of antibiotics, and still a long way to go.

[evalon]

THANKS SO MUCH for posting this…brought back some very hard times for me..as our story is soooo much the same (daughter was 18 months old when symptoms began..) Took us a year to find the road back..cured..totally with antibiotics..we ALSO went to see Dr at NY Pres…HORRIBLE DOC..HORRIBLE HUMAN BEING..the day I left that wicked woman’s office was the lowest point of my daughter’s illness..so not surprised that she has done so much and so little to devastate so many parents. Any parent reading this should NOT consider seeing that awful woman. I considered sending her and her bosses at the hospital a letter detailing how wrong and uncaring she is..but..was in the middle of healing my child..didn’t want that negative energy..reading the article just burns me up..maybe I shoudl write that letter after all!! THANKS for letting mne vent! ev

[Maz]

@evalon wrote:

Took us a year to find the road back..cured..totally with antibiotics..

Evalon, it is always great when you stop by with updates. It just warms my heart to hear your little gal is doing so well. What a nightmare you went through and your story is one with such a happy ending. When you put pen to paper to write about the “horrible doc,” would you also consider jotting a little summary of your daughter’s AP story for the main website? It would be a real gem to have it in lights for so many other worried parents. 🙂

Please give your little one a hug from us here and one for you, too! 🙂

[evalon]

Hi MAZ!!! YES!!!!! I won’t waste my time with that horrible woman!! Instead,,will write our tale and let everyone know that abx works and my healthy 5 year old is proof of Dr Brown’s work!! I am on school vacation next week..will post our story!!! We had such ahappy ending..other parents should know..thanks!!! With love and always grateful to YOU and the love and support I found here…I still can’t believe how that article is so close to our story…I remember dialing YOUR number and bursting into tears that I finally found someone that understood. Will do next week…peace, yvette (evalon)

[Maz]

@evalon wrote:

YES!!!!!

I am on school vacation next week..will post our story!!!

YAY! Thanks so much!!! 😀

[Anonymous]

Four marvels powder is also called Si Miao Wan in TCM. But be careful, you can only take it when you have hot model RA.

@Valsmum wrote:

Great article.
I am feeling so much better eating the same way the little guy in the article eats. What is the “four marvels powder”? I never heard of it.

[Anonymous]

Good article. Thanks!

[Suzanne]

The author will be on Dr. Oz today.

http://www.doctoroz.com/episode/disease-your-doctor-cant-diagnose

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

I think this is a pretty good recap of the segment:

http://www.drozfans.com/dr-oz-kids-health/dr-oz-leaky-gut-symptoms-juvenile-arthritis-vs-leaky-gut-syndrome/?utm_source=feedburner&utm_medium=twitter&utm_campaign=Feed%3A+DrOzFans+(Dr+Oz+Fans)

“Susannah Meadows told Dr. Oz that she cannot be truly certain of what cured Shepherd since he was taking Methotrexate and following an alternative medicine protocol at the same time, but in her heart she believes it was the dietary and supplement changes that truly made the difference for her son. Dr. Oz added that there is something of a war going on with our health today because of the constant battle between conventional medicine and alternative medicine. Dr. Oz said that conventional doctors simply do not have enough knowledge when it comes to alternative methods, so they are really in no place to shoot down a treatment just because they do not understand how it works.”

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Author]

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