Alison & Bee Lyme Disease Fund
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!
Alison and Bee
Of the co-infections, I have Babesia, Bartonella, and chronic Epstein-Barr virus. It's looking like I have about a year left of treatment before I am completely in remission though this disease is unpredictable. In the next few months, I'm starting some new drugs to annihilate the biofilms (protective shells that the Lyme bacteria create) and cyst forms of the bacteria. Also adding more coverage for the co-infections. Down the line, once I get to the point where most of the bacteria and viruses are killed, we'll start rebooting my immune system - one of the last steps to recovery.
In not as good news, Bee had a bit of a set back. A few weeks ago, his gut was steadily worsening which eventually led to an emergency endoscopy and biopsy. After several tests, it's not clear what caused the symptoms aside from severe inflammation, gastritis, and gerd (a common symptom with Lyme). He had to stop most of the Lyme treatment except for those awesome shots of Bicillin 3 x week in da butt. About a week ago, he started the elimination diet per this highly recommended book: Digestive Health with REAL Food. It seems to be helping. In two weeks he sees our LLMD and hopefully will start to slowly build back in more Lyme and co-infections treatment.
I extended our fundraising amount - though it will most likely cost much more than that. We do not expect any of you to donate any more than you already have so please do not. Just keeping it open for anyone else out there who may be sympathetic to our cause.
Last but not least, we both want to say a HUGE THANK YOU to all of you for donating to our fund. We would not have been able to continue treatment without you!! I am beyond ecstatic to see some positive results and can't wait to be back in good health. Bee will take much longer but he will get there too eventually! We are hanging tuff together and working hard every day to get better.
Endless thanks again everyone!! We are sending you tons of love and good health, Alison and Bee xoxo
P.S. Check out my design side-project - lymestats.org - for a ton of quick facts you can share with loved ones. There's a ton of misinfo out there by doctors and the CDC. Hopefully with the real truth of this disease making headlines (i.e. Avril Lavigne's story), awareness and NIH funding will grow, and less people will get it. There is no doubt in my mind that right now it is an absolute epidemic. Stay informed and watch out for flu-type feelings after ANY bug bite. If that happens, get to an LLMD immediately. ilads.org has a doctor referral page. xo
Some more info on where we are with things: attached is a photo of my current Lyme treatment which starts at wake-up and continues until bedtime. Bee’s looks pretty similar though he has less powders and more tinctures (herbal killers of the Lyme co-infectors = replacement for antibiotics if your gut can’t handle them). I’ve been off alcohol since last fall, off gluten, grains and carbs (except occasional brown rice), and a bunch of food that apparently I have a tested intolerance to via an Alcat Test. Absolutely no sugar is allowed. (FYI - Sugar feeds Lyme, yeast, parasites, bad bacteria.) Since November a few of my symptoms have indeed improved though I’m not out of the woods yet.
All of your donations will help us progress through treatment and I hope to really feel much better in the next few months! Bee and I both THANK YOU immensely!!
One scary part of this - I would NEVER have thought that I had Lyme if Bee’s doc hadn’t suggested it.
I believe more people have it than anyone knows. In fact, according to the CDC, the ISDA, most medical doctors, and insurance companies, what Bee and I suffer from every day does not exist. It’s an infuriating and ridiculous situation. The NIH spends more money researching Headaches each year than on Lyme Disease. This needs to change (i.e. better testing, more research, improved (and insurance-covered) treatment).
It’s crazy to think of so many people suffering from this difficult to treat, life-arresting disease and are told every day that it’s in their head - which is also what happened to us until we found the help we needed.
Please share with friends and loved ones. Maybe you or someone you love has strange symptoms that are un- or mis-diagnosed. If so, find a Lyme Literate Doctor (LLMD) and get the Igenex test to rule it out. We wish we had known this years ago.
Love you guys.
HUGE THANK YOU!!!!! to everyone who has donated already!!! Really means a lot to us. Alleviates a ton of the stress on how to pay for the upcoming couple months of treatment. We love and miss all of you. Can't wait to come visit everyone once treatment is through and we are better! XXX Love, Alison and Bee