My husband, Bee, was diagnosed with Lyme Disease in June of 2014. His symptoms date back to many years ago. While playing guitar in his band Antelope, and on tour with Blonde Redhead, his hands would seize up during concerts. He had migraines and digestive issues on the regular. A couple years passed and severe body aches and pains started - his legs and arms would seize up with inflammation. Digestive issues became chronic IBS. He couldn’t seem to eat enough and feel full.
Then we moved to Berlin. Things became worse. And I started showing symptoms as well.
One day severe stomach cramping left him writhing in pain on the bathroom floor. A few months later, he picked up a mean case of Campylobacter. (I ended up getting the stomach bug too so at least we were quarantined off together in the hospital!) About a month later, we visited a spa resort near the North Sea hoping it would be relaxing after the last year of a stressful relocation. Bee came down with Shingles. At least Coming To America dubbed into German was on the tele. "Ja, das ist meine Geburtstag!" Once the rash and pain went away, he was left with Postherpetic Neuralgia (the feeling of your hair standing on end - but all over your body - for months afterwards).
We found an American doctor and took many trips to see her. “What, do you have arthritis?” “I think you are under stress, why don’t you go see this Psychiatrist.” Bee had a colonoscopy, endoscopy, and went to see the shrink who said, “You are stressed because of your health, not the other way around.” A tiny victory. The scopy’s came back negative. No answers.
Bee's health deteriorated and he was bedridden for months except for a couple more trips to the ER for unstoppable stomach cramping and diarrhea. With no answers from doctors and while internet self-doctoring, we surmised that gluten may be a culprit. We stopped eating it. He was slowly able to walk downstairs again, then up the block, then to Alexanderplatz, then around Berlin again. But the tingling arms, numb hands, body pains, skin rashes, gut issues, depression, rage, migraines, chest pain, "air hunger", months of constant nausea all remained.
At that point, we didn’t know who to talk to. What the hell did he have? If we went back to the US, at least the language barrier would dissipate.
Settling in Los Angeles with very little cash, we had enough to pay for a sublet and a friend-recommended nutritionist/bio-chemist who pointed Bee in a good direction diet wise - no carbs, no grains - which did help slightly but only slightly. Bee was plagued with what we now know is Leaky Gut. Molecules of food were entering his bloodstream. His immune system kicked in to purge it all from his body, and he would be on the toilet for days. A couple more trips to the ER - and this time it wasn’t free. Our GP had no idea what his problem was. The ER docs gave him drugs for pain and nausea - no answers. (If they didn't know what you have, you must not have anything.)
We found an Integrative Medicine Gastroenterologist. Over the course of 8 months, we managed several office vists, tons of tests, buttloads of supplements - all not covered by insurance. We borrowed money from family and friends at times (thank you!). Bee got about 60% better. By the spring of 2014, the gastro doc had just come back from a Lyme conference in Germany (insert irony emoticon here) and suggested that he get tested for Lyme. We thought that to be preposterous but what the hell. Rule it out.
A few weeks (and one more trip to the ER for symptoms similar to Lyme-indused heart block) later, we got word that he was positive. He was transferred to an Infectious Disease Specialist in LA. She healed his leaky gut, then started him on antibiotic shots: one shot in the butt twice a week for many months. The shots were $185 each and I was soon to learn not covered by insurance. As treatment progressed with mountains of pills, powders, and tinctures, (again nothing covered by insurance), Bee was starting to show improvement. However, new symptoms emerged as part of the die-off reaction: brain fog, memory issues, stuttering, word loss, etc. I started submitting all of our tests and receipts to insurance with the response of “No - does not qualify as a medical emergency”. I appealed and still no.
My own symptoms were subtle at first but gained traction since our time in Berlin: “dizziness with the need to sit down”, gut issues, horrendous PMS, intense anxiety with racing heart beat, night sweats, heart palpitations, swollen glands, etc. I assumed these were due to the stress of working full-time and moving a million times while going through all of this. The Lyme doc suggested I get tested so we saved up and I got tested a few months later. Positive!
We are six months into Bee’s Lyme treatment. He has to go up to three shots a week (and then potentially switch to IV), plus take other herbal killers for all the co-infections. If you have had it for a long time, Lyme is tricky to treat. It can hide and move around burrowing deep into tissue throughout your body. It can knowingly avoid treatment areas and create biofilms to protect itself. It mimics non-threatening cells so it is not attacked by your body’s natural fighting mechanisms. Lyme also comes with co-infectors which burrow into other systems. We both have two of the usual suspects, Babesia and Bartonella.
Now there are two of us in the trenches. I am on three different oral antibiotics daily, plus pills, powders, tinctures, and hormone treatment. We bought two of those giant-sized pill organizers and have a drug regimen that starts at wakeup, and continues every couple of hours until bedtime. Already after a couple months of Lyme treatment, the dizziness, most of the brain fog, and PMS are gone! We don’t know how long Bee will have to go through treatment but it’s not looking like ending any time soon. And of course, none of this is covered by insurance.
In 2014, we spent approximately $50,000 on the gastro and lyme docs and treatments. Unfortunately, the upcoming expense is adding up to beyond what we can pull in through jobs. So we very reluctantly ask for help. Anything at all would help us out so much. What we are hoping is to get some assistance so that we can complete this very expensive treatment.
That’s our epic journey so far. If anyone has any questions about Lyme or treatment, please contact us. As far as how we got it, Bee was potentially bit by ticks in Maine in the early 90s. I was never bitten by a tick as far as I know. There are new studies finding it to be an STD. The CDC, medical, pharmaceutical, and insurance industries all claim that Chronic Lyme Disease does not exist.
The Lyme doc says Bee’s hand/arm numbness and inflammation should hopefully go away once treatment is completed, and he should be able to return to playing guitar. In the meantime he is doing graphic design and illustration and is looking to take on new clients. I'm continuing with my full-time job which I'm lucky to have been able to maintain throughout treatment, thanks to an understanding and supportive group of awesome co-workers!
Thanks so much to all of you who have helped us over the years. We are fighting every day!