Saturday, July 16, 2011

My Tick Bite: A Quarter Million Dollar Nightmare

By Alix, SpiroChicks Co-founder

Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group at a Fortune 100 company, I became disabled with mysterious symptoms -- cognitive dysfunction, nausea, headaches, joint pain, and excessive sleepiness. Eighteen years after the bite and thirteen years after becoming disabled, I was finally diagnosed with late disseminated Lyme Disease.

Since my diagnosis, I've spent about $2,000 per month on treatment. Since 1996, I've spent upwards of a quarter million dollars trying to regain my health. Yet, I'm still unable to work full time due to central nervous system involvement.

The toll this disease has taken on my life is unfathomable. If I'd only known what to do when I saw my raised pink rash, I imagine I'd still be on my career trajectory, which I thought would include running a major high tech company in Silicon Valley. I mourn the loss of my career to this day.

A few times a year, a friend will call to report a tick embedded in his or her skin. I tell them to get to a Lyme literate doctor. Most go into denial. They recite the myths to me: "It was only attached for an hour," "It was brown," or "There is no Lyme in this state." Or, they make things worse: "I killed it then I took it off." In Lyme, denial is not your friend.

Though I still don't consider myself a Lyme expert, I wish I'd known what to do for a tick bite:

  1. Perform tick checks after hiking, gardening or doing other outdoor activities. When doing tick checks on the body, include places "the sun don't shine" like the crotch, armpits, and belly button. Hair is a great place for ticks to hide, and a difficult place to see them.
  2. Do not squeeze an embedded tick, as that injects the potentially infectious contents of the tick's stomach into you. Pull it out by the head with tweezers.
  3. Save the tick in a baggie. Have it tested by your local vector control ($25-50) and/or by IgeneX Lab ($65). Though not foolproof, this is the least expensive and best way to know if your tick carried diseases that could make you sick. A tick can be ground-up and tested, but once you are infected, the evidence leaves your bloodstream rapidly and we can't put you through a meat grinder to find conclusive evidence of Lyme Disease.
  4. Call a Lyme-literate medical doctor (LLMD) and make an appointment. Many have immediate openings for those with a potential new infection. Your LLMD will help you weigh the cost-benefit of prophylactic antibiotics. Geography, how long the tick was attached, the season, and the tick's life stage are factors in determining your protocol for testing, treatment, and re-testing. 
  5. Do not rely on Urgent Care, your local doctor, or an infectious diseases specialist to treat you. In a third of cases, the current treatment guidelines lead to undertreatment - and chronic illness.
I also wish I'd known that:
  1. Though Lyme is associated classically with a bull's eye rash, only half of those infected report one. Much of the time, it resembles the Target logo - a bull's eye - but any large pink welt can also be a Lyme rash. The rash does not occur immediately.
  2. At first, untreated Lyme can lead to a "summer flu," joint aches, or headache.
  3. A third of patients who get the standard treatment - a couple weeks of antibiotics - will relapse and become chronic. Lyme-literate physicians will prescribe 4 - 6 weeks of antibiotics for a new infection, greatly reducing the chances of treatment failure.
  4. If Lyme is not fully treated while it is still accessible to antibiotics (in the bloodstream), the Lyme spirochete - a spiral-shaped bacteria - will drill into your joints, organs, and central nervous system. It will begin to disable your immune system.
  5. When the spirochetes are no longer in your bloodstream, testing becomes unreliable, but you will become wildly symptomatic.
  6. Seemingly unrelated symptoms, from joint pain to digestive issues to headaches to exhaustion, will become your daily norm. That the symptoms seem to play tag team will make it maddening for you and easy for a physician to diagnose you with hypochondria.
  7. Longer term, you will have severe cognitive issues, neurological issues, and possibly suffer heart problems. 
  8. You will be tested for every known disease, be declared perfectly healthy, and join the hundreds of thousands of new annual chronic Lyme Disease victims.
  9. As a rule, every year you go untreated, you need three months of treatment.
  10. If you are "lucky" to get a chronic Lyme diagnosis, insurance applies a double standard. They will pay for a month of antibiotics then deny you could still have Lyme after that. However, in the face of failed treatment, if you ever find yourself uninsured you will be denied insurance due to your pre-existing condition.
  11. After the first month, 100% of costs of treating Lyme - medication and supplements - are typically paid out of pocket.
Just remember this is all preventable with prompt and thorough Lyme treatment. If I'd known what my rash was and what to do about it, my case of Lyme would have cost less than $100 to treat and the course of my life would not have been ruined by this illness. I'd have been an asset to our economy instead of a drain.


huesofnature said...

Alix, the next time I field a tick bite question, it will include a link to this post. You are right on target, no pun intended. Denial can be as dangerous as the bite. Thank you for sharing such critical life-saving advice!!!

Kim said...

Alix, thank you again for the new favorite resource!!! I apologize for choosing the wrong identity when posting my comment above.

Molly said...

Yes, so true. Even before your mystery illness was diagnosed you most likely spent thousands. It is daunting to look forward. My husband and I are in our mid-50's and our biggest concern is our ability to provide care for our daughter. We will never retire and hope to maintain our health so we can continue to care for our sweetheart. I am not sure I want to know the cost of care to date. Let's just say, tuition at a private college pales in comparison.
I also want to mention that my daughter WAS diagnosed immediately-10 years ago. The treatment she was given at that time evidently was not enough to eradicate the spirochetes. She also was not tested for co-infections at that time (we had no idea). Her health continued to deteriorate over the next 7 years and then she was re-diagnosed with Lyme and several other issues.
Thank you for such a great article.

Karen M. said...

Oh, Alix. This is beautiful, wise, and heartbreaking--thank you so much for creating it.

Dat said...

i posted this on my fb page "pretty much the best, to-the-point, most comprehensive article--on tick bites/ lyme--- i've read so far. if you skip over all my lyme education posts(i would too if i didn't have it), this would be the ONE to read."

thanks so much for this blog... my favorite resource for lyme info, lyme humor and lyme reality.

Alix said...

Thanks for the great comments everyone! You are making my day. I'm so happy this is going to be a helpful resource for people.

Feel free to add any points I left out. I remembered one this morning: do not wear potentially exposed clothes without laundering them and checking for stray hiding ticks. From what I understand, dryer heat may not be hot enough to kill them. This is possibly my route of infection - a pair of hiking socks that may have harbored a tick from a previous hike.

carrie garman said...

I did the same thing. Tried 8 drs locally then two herbalists before in the mean time 3 years had past without correct treatment. I lost my loan offices, all my employees, 3 properties I owned and still losing the one im in and my savings is gone now and ALL went to treatments. If I had went to lyme specialist in first month or so I would still have everything I have since lost. I have come across people who get bit that do the same as you explained and just treat themselves. I pray they dont end up losing everything like we did. I am in the same boat as you. Selling things around the house to pay for doctors visits isn't where I thought I would be 4 Years ago when I had found an engorged tick that had been on me for 4 days prior to finding it. I had been cutting firewood and 4 days after found the tick, after being in bed unable to walk for the four days, unable to move my hands, and lethargic. DNA says I had been infected prior 4 years prior to that infection thats why my reaction to that tick was so severe. I thought I was dieing. I am tired of being sick, tired of paying all the money I make on disability on drs and meds and tired of not being able to take care of my kids and put them through school like I had planned. The kids and I were set for life and it was all ripped from us by a tiny little bug that I never feared until now. If only I had been educated before hand. I never thought I would be going to food drives to feed my kids. EVER! I thought we would be selling our lands and living the good life by now. Please who ever reads this, if your bitten its worth the Lyme Specialist visit no matter how much the first fee is to go make sure your treated correctly quickly before your entire life is torn out from under you!

Kimberly said...

This article makes me feel a little better. I don't ever recall being bit by a tick but I used to be a camp counselor in Pennsylvania. I am thousands and thousands of dollars in debt to Stanford Hospital and they refuse to test for Lyme because they act like they don't believe in it :( My insurance doesn't cover any local Lyme docs, and I'm so close to giving up.

Alix said...

@ carrie, I'm so sorry you were hit so severely both medically and financially. It is just not fair. This disease robs us of everything.

@ Kimberly, I had that same experience at Stanford and it delayed my treatment for another two (unnecessary) years. I hope you can find a way to have an initial appt with an LLMD - don't let this get worse. As I mentioned in the article, every year it goes untreated is 3 months of treatment. Add up how much that would be and cut your losses now.

Christina said...

I am so sorry for all of your suffering. That is awful!
I haven't found a tick. But I did go camping 4th of July weekend and about a week later I felt irritated in the crease of my upper (tmi) butt crack. It's been a few weeks now and I see what looks like an oval reddish rash and it hurts. Does this sound like it could have been a tick even though I didn't find one? Or could it just be another bug bite or maybe even a heat rash? I am getting worried and I leave town tomorrow for a week. I am wondering if I should get to the dr right away or if I should wait it out until I get back and see what's going on? Advice would be appreciated.

Alix said...

@ Christina - I hope you subscribed to the comments on this post. Please go see an LLMD immediately. That is exactly how my case began. I never saw the tick, only a raised oval rash. Mine was on my ankle, going up my shin. The camping, timing, location of the rash, and description all sound highly suspicious. Please take photos ASAP! You never know when you might need to prove you had a rash. Make sure you get one with your face in it, too - I know that's particularly difficult with the location of your rash, but do it. Most of all, call a Lyme Literate doctor right now so you don't start a years-long nightmare.

Alix said...

Here are the treatment guidelines from ILADS. You can likely find a Lyme-literate doctor on their site or by calling them.

Ryan T. said...

Hello Alix,

Have you ever been to this website?

Ryan T. said...

Hello Alix,

Here is a website.

Ryan T. said...

Hello Alix,

Please try a zapper.

Ajadi Gardens said...

This is so true and so sad at the same time. I have spent the last 25 years trying to get better and work at the same time and now work is not a possibility for me. So, you have to make decisions like cashing in your 401k knowing the possibility of making that up are slim. If the financial costs aren't enough, along comes the broken relationships because people don't really understand the depth of the toll this disease inflicts. I am now known as the health nut sister of my family and everyone thinks I am bit crazy and concentrate just a little too much on my health. But I try to understand that they don't realize that inside I am really gasping for air from air hunger, slowly starving because I don't absorb food properly, have insane insomnia and in severe pain. Who would have thought you could be that ill for so long from a little tick bite. But with all the negative Lyme brings to your life, you can find some positives. It definitely slows you down and makes you concentrate on the really important things in life and hold onto any small things that may bless your day. I can say it has made me more compassionate and given me a drive to help others as I help myself. I believe this is the case with many of us as we are able. But I try to concentrate on what I can do for that day and except the things I can't. Some days I am more successful than others. I have met some truly exceptional people on this path and I am sure many more will pass my path. I hope in turn to inspire others as we are all in this together. Thanks Alix for putting into words what we all want our families/friends to understand but don't have the energy to tell them.

Currently I am doing the Gerson therapy which is very helpful for detox and nourishing the body. Of course its not cheap either. Another good read is the Wellness Warrior and I thought this article may be interesting to some. It also tells the high price of healing in a more natural way.

Alix said...

"Ajadi" thanks so much for that link. That is a great run down of how much it costs to switch to a health-giving protocol, no matter what condition we are fighting. There was a commenter who said it was bad to post how much money the Gerson protocol costs, but I totally disagree. Her post got me thinking there is a book in our collective stories of how much we are spending on alternatives, how much we are benefiting, and how much it is SAVING the system to shoulder the entire burden of our healthcare ourselves. It's really a crime that natural modalities are not covered by insurance.

Anonymous said...

One other important thing. Even if you are treated with antibiotics, unless you treat the co-infections with them (which require different antibiotics), the infection will stay. My daughter has had lyme 13 yrs without treatment (except for one month of doxy in 2009 when I begged for it), but since she was never tested for co-infections until 2010 (but not the right ones), she continues to suffer to this day with encephalopathy, PANS, hypometabolism and hypoperfusion of the brain, Her cognitive abilities are shot; she has severe lyme insomnia, bonecrushing fatigue and hair follicle pain and memory loss. She is finally on meds for bart and babs, but is going to 19 and has had to defer college. She will start IV rocephin soon. This disease angers me so much. Yolanda H Foster (Beverly Hills housewife) is good to follow on twitter. She can afford any treatment and has tried both allopathic and complementary, and she still suffers. She is currently in a clinical trial that has healed about 70% of the people in the trial. Good luck everyone!