My son's story: Lyme, Costo, AS, Reactive Arthritis.

[marypart]

I last updated my son’s story in 2013. I haven’t been on Roadback for a long time and wanted to update to inspire and give hope to others. My son has now been in a total remission. Since 2012. Seven years. He is unaffected by diet. He can eat anything and has no symptoms of arthritis. He is a fulltime Registered Nurse, married, and going to graduate school soon.

Here is my son’s story as I wrote it in 2013.:

In 7th grade he was a gifted basketball player and he had a severe case of bilateral Osgood-Schlatters. He spent one full year resting.. no jumping or running, no PE. He got better. He played 4 years on his high school varsity team and was the team MVP every year.

He had lower back pain sophomore year that went away with steroids and some rest.

Senior year, at the end of the year, ready to go to college and play ball, he came down with a severe reactive arthritis. He was 19 he developed the hallmarks of AS including costochondritis and enthesitis in multiple joints. Both ankles, both knees, both hip flexors, both shoulder enthesitis, and the worst part (and most scary given my family history of undifferentiated spondyloarthropy) costochondritis. The costo was the most painful and the most disabling part.

The immediate trigger was a very bad gastroenteritis with diarrhea.

3 years later and he has no symptoms. He’s back playing intramural basketball and soccer at college and he’s been well for about 10 months. Maybe it’s a remission, but we’ll take it.

The key is to find the right doctor… one who is open to and experienced with a wider array of treatments than the mainstream rheumatologists.

I come from a family with lots of arthritis. I’m 55 and have 4 siblings with serious arthritis, two have Crohn’s disease as well, and two have had the diagnosis of AS. One has a completely fused ribcage and three have been sick since their teens.

I knew from previous research that there were many doctors out there that believe in antibiotic protocols for arthritis. I found roadback.org — a forum for patients using those protocols– and I wrote to them for a doctor.

We chose one, a rheumatologist in Northern Virginia, just outside DC, who is not only an AP doctor, but also a well-known Lyme doctor. She tested my son for all kinds of infections, and it turned out that one of his problems was untreated Lyme Disease. She treated him with IV and oral antibiotics, anti-parasitics, anti-fungals, and anti-virals over a period of two years. (Four months of IV for the Lyme.)

Remember, a negative test result does not mean you don’t have Lyme. In Virginia they just passed a state law forcing doctors to explain to patients that a negative test does not prove that you don’t have Lyme.

He now has no symptoms of arthritis… he will be 22 in June. He’s back at college fulltime and playing intramural basketball and soccer. I urge you to find one of these doctors and ask for a doctor on roadback.org.

[Spiffy1]

Thank you so much for this encouragement. This will mean a lot to so many people! If you get a chance you might consider adding this to our stories section. We love good news!

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, minoMWF

[Luck20]

Thanks so much for taking the time to share his story. I’m so glad to hear he is doing well. It takes a lot of courage and determination to not give in to negativity and search out an answer. Your an inspiration to us all!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Pinkmoth]

great news Mary. I am so happy to hear of your son’s recovery. you did a great job advocating for him by finding the right path to take for treatment.

I sent you a Private Message through the forum as well

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, biocidin

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