In April of 2013, Jen was officially, FINALLY, diagnosed with advanced late-stage Lyme disease. But the SOLUTION to Lyme disease is another story entirely. She's had 9 very difficult and costly months of treatment, with another 9-12 months to go. Help her make it to HEALTH again.
Jen spent summers as a kid at her grandparents' house on a wooded lake, where ticks were a regular pest, and learning how to safely remove them was the only thing they had to worry about. But just as Jen was growing up getting "normal" tick bites, researchers were finally putting the pieces together that a specific set of symptoms that were present in children in Old Lyme Connecticut were an independent disease which they cleverly named Lyme Disease.
By the time they learned that Lyme disease was a tick borne illness, and one that was not limited to the northeast, Jen was in Jr. High, age 12. She had already been through 3 surgeries and one very serious kidney disease brought on by toxic overload (they thought) from having strep 5 times in one year. No one stopped to ask why her immune system was so weak she had such severe strep that it caused her kidneys to shut down.
From there it was just surgery after surgery, illness after illness, looks of bewilderment, shock, frustration, and downright stupidity in some cases, became the rule of the day when something else went wrong and she had to write her full health history down. But there were always times that she felt great, and it never made sense when things broke down. The last example will take us to present day.
In May 2011, she learned everything she could about eating clean and the paleo movement, and began eating super clean, respecting her body, and things started to change. By November 2011 she had lost 43 lbs, and had started lifting heavy with Wendler's 5/3/1 program. Even with a surgery in between, by May of 2012 she was squatting 145#, dead lifting 165#, and could flip a 365# tire.
November 2011, Jen has lost 43 lbs, is lifting heavy, doing tabata sprints, building full on outdoor playhouses for her daughter. And then....she started to hurt. It wasn't something that could be stretched out or massaged out or rested out. It was her endometriosis, but she refused any hormonal treatment after previous months of painful and unpredictable fertility treatments. She chose an IUD which was supposed to help, but instead the mere insertion set off this chain of events that still, 2 years later isn't over.
They took it out after over a week of begging because they said it was "in place" and the doctor literally said to her "I don't know what to tell ya sister!". We fired that doctor and went to a surgeon. It was time to say goodbye, and face the big H: Hysterectomy. At 35 it was an emotional journey, and one the she thought was the end of the pain. Post surgery results showed she had endometriosis (endometrial cells growing outside the uterus), adenomyosis (endometrial tissue inside the uterine muscles), fibroids, and tubes overrun with tissue/cysts, with a huge portion on her kidney across the ureter.
Her recovery from surgery seemed like kind of a miracle at first, she stopped taking pain meds in 10 days, and aside from being tired, didn't have any pain. Felt great! Then at 4 weeks, an infection. They gave her Biaxin, which is a lyme treatment , so the radicals were calmed for a few months. Then by June, it all started again. She went back to the surgeon, and he basically said, "oh, did we not do the interstitial cystitis test in surgery? we usually do as a precaution. That's probably what it is. Here, go see our Urogynecologist." Who is booked 8 weeks out.
She found a great doctor that got her in the next day to get her into some pain treatment, and then officially diagnosed her through an outpatient procedure. Interstitial cystitis and pelvic floor dysfunction, all common side effects of difficult surgeries, none of which was made clear prior to surgery. Treatment? Twice weekly catheter injections, and for flares a pill that makes your pee turn blue. Fun. Pelvic floor dysfunction, is not a fun thing. It was described to be as the abs between your legs, and it can control everything from your posture to shooting pain down your legs, and can cause incontinence. And then there's the part where you can't sit in hard chairs. It all goes on and on.
Did we mention that the hysterectomy was done orthroscopicaly, which is where the abdomen is filled with Carbon Dioxide gas to clear the area while they work instead of a full open surgery, giant scar, and longer recovery. The surgery took over 4 hours. Lyme thrives on Carbon Dioxide and scar tissue, and connective tissues. Can you see where this is headed?
From there we moved to Seattle and started over. She was diagnosed, in addition to all previous noted: Fibromyalgia, Rheumatoid Arthritis, Hypothyroidism, Chronic Fatigue, Sleep Apnea, Delayed Sleep Phase Syndrome, MTHFR genetic deficiency, and finally LYME DISEASE!
The treatment is long and painful. Jen is a trooper, but 65 pills a day, heavy anti-microbials, probiotics, things to fight the Lyme, and co infections Bartonella, Babesia, and Candida Albicans....
Lyme is a the great imitator, and all of the diseases and diagnoses Jen has, those symptoms are still there. It's all finally grouped under one Monster Dx, but the treatment is against the spirochete bacteria, Borrelia bergdorferi, that is the base of all the mystery, the reason the pain never went away, because we were still treating symptoms, while giving the bacteria time to really sink in. Lyme has caused all of the auto-immune disorders and in turn all of the pain Jen is in. It has even crossed the blood/brain barrier and is causing neurological and memory issues.
There are too many things to go on, but please take a minute, even if you just skimmed this. There will be people who will never read the whole thing. And that's okay. But we hope that you will SHARE it. Give others the gift of knowledge, to keep them safe. And yes, we hope you'll buy an awesome T-shirt (seriously, have you seen them?), we need to build up our medical fund because we are really scraping the bottom and have a year and $1000 per month to go!
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