SURVIVING LYME DISEASE

I will be updating this post periodically.

When I recently contracted Lyme Disease and began doing research about it online, I realized something was very, very wrong. Lyme was “controversial.” Doctors, scientists and sufferers all seemed to be at war. It was difficult to get correct information, especially about effective treatment. I am currently finally being treated and my symptoms are slowly diminishing. I will be on antibiotics for at least another month. I have been conferring with a good friend who suffered horribly from Lyme several years ago. She was on: antibiotics for 3 months (with the possibility of going on intravenous antibiotics), Advil liquid-gels for the joint pain (her doc said it also protects the joints, just be sure to take with food), and steroids for the mild encephalitis (brain swelling). Her doctor told her to get plenty of extra rest as well so the body can assist the meds in healing itself. It took her 2 years to completely recover. It is possible!

I am praying for all of you who are suffering with this awful malady. I am on the mend--it seems--at this posting (because of hard-to-get proper treatment; see my story below), and I will never forget all those who are suffering. I sleep with a green rosary wrapped around my wrist now.

If you get BITTEN BY A TICK and get a telltale Lyme bulls-eye (BE SURE TO TAKE A PICTURE OF IT FOR WHEN IT FADES), it will be clear that you have been bitten by a tick infected with Lyme disease. If you show a doctor the bulls-eye, you will immediately be put on antibiotics (DOXYCYCLINE HYCLATE) and, if you caught it quickly enough (something like 24-72 hours), you may not develop any symptoms...and after your course of antibiotics you hopefully will have eradicated the bacteria from your system. If symptoms come back, you will have to go back on antibiotics (even for a long period of time).

If you DO NOT GET A BULLS-EYE at the site of the bite, are not even aware that you were bitten by a tick, wait longer than 24-72 hours, or don't find a doctor who understands Lyme and its treatment (or how antibiotics work), you are in a for a fight. The ONLY way to really ascertain if you have Lyme (if you didn't get a bulls-eye and show it to a doctor, or show up positive on any of the very sketchy Lyme tests) is by a lumbar puncture (spinal tap to draw fluid for an accurate examination/diagnosis) and doctors are loathe to do this procedure because of the risks involved. You will not even be told about this option.

TESTS for Lyme are tricky. You will have blood drawn. You most likely won't show up positive within the first three weeks or more of getting bitten. But you will probably already have horrible symptoms by then and no one will "believe" they're Lyme until you test positive and now your treatment will be postponed and then prolonged because you didn't catch it on time. There is more than one kind of blood test that needs to be done to determine Lyme, but they are notoriously inaccurate and can all show false-negatives. Lyme is kind of like rabies. You need to get on the drugs BEFORE you test positive. Once you have symptoms (for rabies, it's too late), Lyme Disease has gotten the upper hand and it's going to take a long time to conquer this now.

If you were bitten by some kind of unknown bug and have all the SYMPTOMS of Lyme (look them up, they also include more symptoms than the 4 or 5 commonly listed--but the symptoms continually morph and surprise you and recur and run rampant in your body, including your brain and heart)--you should definitely begin a course of antibiotics. If they begin to work? Well, the proof is in the pudding. Doctors often do this when they're not sure what you have or how to treat you. They TRY a likely medicine on you. But rarely for Lyme!

What kind of ANTIBIOTICS? DOXYCYCLINE HYCLATE is what works for Lyme. (Doxycycline mono does NOT work for Lyme.) 100mg twice a day, exactly every 12 hours. Sadly, the new protocol for Lyme (no matter if you just got bit or have been suffering with symptoms for a while) is 2 weeks and that's it (it used to be a standard 3). You will be booted off the medicine after 2 weeks, even if you had major symptoms before getting on the meds, and even if it has been working and your symptoms are starting to lessen. The symptoms will return with a vengeance, and you will be told you have PLDTS "Post Lyme Disease Treatment Syndrome," and you will suffer for the rest of your life. You will probably also be told that these morphing symptoms are all in your head and you are actually mentally ill. The very term "Post ANY Disease Treatment Syndrome" doesn't make sense. It means the treatment didn't work or wasn't long enough. Back to the drawing board! Healers are supposed to heal. Lyme disease is complex and has complex effects on the body, but its treatment is NOT that complicated! Start with antibiotics until the symptoms go away + a little longer (even one month!) to make sure the bacteria are dead/not reproducing or whatever the technical term is.

MY FIRST BIG PIECE OF ADVICE: If you don't have a bulls-eye or if you test negative for Lyme but know you got bit by a tick or some other insect and can't get any help, SKIP THE LYME DOCS AND INFECTIOUS DISEASE DOCS (at least at first) who will give you the runaround (they are trusting the sketchy Lyme tests even though they know they are sketchy, and they're also trusting this silly "2 weeks of antibiotics and no more" protocol that's coming down from "the top" of officialdom somewhere) and find yourself a REGULAR doctor who understands how antibiotics in general work, and will prescribe the DOX HYC for as long as needed. The possible side effects of long-term antibiotics is far less serious than leaving a horrible disease untreated. In fact, for any disease where you're taking antibiotics, you should be asymptomatic for at least one week before you go off them. For Lyme, you may need to be asymptomatic much longer. The bacteria associated with Lyme is incredibly stubborn (and does this "laying low" thing) once it gets into your system.

MY SECOND BIG PIECE OF ADVICE: Don't listen to all the blithe advice about how to avoid getting tick bites: "Just take a shower after hiking! Just spray on DEET! Just wear long sleeves and check yourself all over your (naked) body with a hand mirror after being outdoors!" NONE OF THESE REALLY WORK. It's true that ticks don't fly (they generally attach when you brush up against vegetation), but they do drop out of trees on you, are present on other surfaces besides vegetation, and they are little heat-seeking missiles that find you immediately and immediately attach to your shoe, pant-leg, etc., and begin climbing up you to a warm area: back of leg, neck, groin, armpit or anywhere. Ticks are master home-invaders (the temple of your body). "But I just stepped outside for 3 minutes and it wasn't even that overgrown!" Exactly.

MY THIRD BIG PIECE OF ADVICE: Stay out of nature. I mean, completely. Don't even put your foot on grass. Don't stand under a tree. I'm a big nature person. I was going to be an ornithologist and I love hiking, being outside, exercising outside, etc. Forget it. Lyme is not worth it. Ticks not only carry Lyme, but at least 8 other diseases AND TICKS CAN GIVE YOU MULTIPLE DISEASES WITH ONE BITE. Are you safe on the beach? Nope. Ticks are in those blades of grass around the beach AND man's best friend (woof!) drops ticks all over beaches where the ticks wait in the sand to attach to humans. Other critters and birds also drop ticks everywhere.

MY FOURTH BIG PIECE OF ADVICE: Lyme is EVERYWHERE and SPREADING, including in Europe (where they are being much more sane about properly treating people, and they're developing a vaccine). Take up URBAN HIKING. Strap on that backpack and hit the cement far from any greenery. Watch Animal Planet for your nature fix. Ticks are active from March to November (but supposedly not after the first hard frost, but they do awaken during the January thaw!). July/August is their peak month. I feel so sorry for the younger generation (esp. in New England and other Lyme hot-spots) who can't enjoy nature like we used to. We were never, ever bothered by ticks, not even disease-free ticks while I was a kid, teen and young adult. I spent hours and hours laying in the grass, climbing trees, bushwhacking, hiking, mountain climbing, running through fields, strolling through the woods. My family and I never saw a single tick EVER. Ticks were for dogs. I avoided asphalt like the plague when I was growing up. Never, ever again. Lyme is still a fairly new epidemic and it's only getting worse. I will literally be a prisoner now during the Summer. I will stay inside and enjoy looking at nature through glass and screens OR sip lemonade in the shade of skyscrapers downtown.

MY FIFTH BIG PIECE OF ADVICE: Be very, very careful how you present yourself when you go to the ER or any doctor about Lyme. Doctors are being instructed that many mental patients think they have Lyme and are making up their symptoms, or that your symptoms are psychosomatic symptoms (real, but brought on by a state of mind). You are going to be feeling crappy, scared as heck and perhaps even a bit incoherent (if the brain fog has set in). Bring a trusted, suave and brainy friend-advocate with you. Don't go alone unless YOU are suave and brainy. Joke around a little. This always works with doctors! It shows them you are normal and not obsessed. Almost act like you don't care about your health and you're not too worried (otherwise they can also think you're a hypochondriac). Remember, medical professionals only go by TESTS and Lyme tests are faulty.  HIDE HOW MUCH YOU MIGHT ALREADY KNOW ABOUT LYME. DON'T BE BOSSY OR PANICKY. DON'T LET YOUR TRUSTED, SUAVE AND BRAINY FRIEND-ADVOCATE BE  BOSSY OR PANICKY ON YOUR BEHALF. Be a cool cat. It might save your life and get you what you need.

A FINAL NOTE ABOUT LYME: The symptoms of Lyme are very creepy, scary, terrifying, serious, disconcerting and depressing. Every part of your body has been invaded and you can feel all the morphing, recurring action continually. But it's never too late to fight back--even if it has been years since you got bitten! Get on those antibiotics and stay on them! It will take weeks/months to feel better. You may need intravenous antibiotics. Read the stories and articles below (I personally know Diana and Lori). I've also heard that some homeopathic stuff helps, too, but DO THE LONG-TERM SCIENTIFCALLY-PROVEN ANTIBIOTICS FIRST. Find a "Lyme Literate Doctor" in your area ONLY from the www.ILADS.org (can't necessarily trust the others). They will email you a list of LLD's in your area and you can contact them by phone for an appointment. Much of it will be out-of-pocket payment.

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AMY TAN'S STORY: (Yes, Amy "Joy Luck Club" Tan)
If this can happen to someone as high-profile and intelligent and well-respected as Amy Tan, it can happen to anyone. Please read her extremely helpful and horrific account carefully. Please note that she was bitten by a tick in its "nymph" stage, didn't get a bulls-eye, how hard it was to get diagnosed even when she suspected Lyme, what happened each time when she went off the antibiotics too soon, how Lyme can initially affect different people in varying ways but all within consistent parameters. Also note how faulty the testing is (when you can even get it)! Also note the GOOD Lyme organization and "Lyme Literate Doctors" she mentions at the end of article. You can email www.ILADS.org and they will send you a list of Lyme Literate Doctors in your area. Be careful of any other Lyme organizations. There are other good ones, but I don't know which ones they are.

http://www.amytan.net/lyme-disease.html

DIANA'S STORY:
In 1999, a tick dropped out of a tree and bit her in Boston. She contracted Lyme, but it didn't show up until she was back in Miami a few days later. No one knew what was wrong with her and they put her on the wrong antibiotic. She grew sicker and sicker. She finally decided to go back to Boston where it happened and was lucky to connect with an excellent doctor who tested her for Lyme via lumbar puncture (she was positive), put her on months of oral DOXYCYCLINE HYCLATE (and told her if that didn't work he would start intravenous DH). She also needed steroids for some mild brain swelling/inflammation and Advil liquid-gels for the joint pain. She was exhausted all the time, gained a lot of weight, had brain fog and memory issues, took frequent naps, had no energy, and sported huge purple circles under her eyes. But the months of antibiotics worked. After she got off them, the Lyme did not return and it took her a full 2 years to get her energy back and feel like herself. Diana had "neurological Lyme":

"Neurological complications most often occur in the second stage of Lyme disease, with numbness, pain, weakness, Bell's palsy (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache."

LORI'S STORY:
Lisa lives in the U.S. South, got bit by a Lyme tick and was misdiagnosed. After 3 years without treatment she wound up in a wheelchair. Once she was diagnosed and began antibiotics, she got out of her wheelchair after several weeks and is now cured. She still has a little numbness and tingling at times, but that's it.

MY COUSIN'S WIFE (NEW JERSEY):
When my cousin's wife heard about my Lyme, she posted that she was in a wheelchair from Lyme also and it took 6 months of antibiotics and 6 months of physical therapy to be able to walk again. She's now 12 years Lyme free! (People talk like that because it can come back...and you have to go on the antibiotics again.)

MY STORY:
Two years ago in August, I got a clear-cut case of Lyme in Boston. I got bit on my calf one night outdoors around 8pm. (I felt it. It felt like pinchers or a sting, not like a mosquito bite). You often don't feel a tick bite, but if you're allergic to them--which I must be--you do feel them, and your bulls-eye can develop immediately. It was a little itchy, I didn't even look at it (I was wearing thick socks over nylon stockings just sprayed with DEET which the tick bit through within 10 minutes of my going outside). The next morning the site felt weird so I looked at it. A nice, large, clear Target-logo bulls-eye had formed. In under 24 hours, I went to the ER, the doc took one look and said: "We don't need to test you. Here's a prescription for the antibiotic DOXYCYCLINE HYCLATE." I took it for 2 weeks, no symptoms developed. Got off the DOX HYC after the 2 weeks. Nothing. No sweat. At this point in my life, and being from New England, I thought I knew something about Lyme Disease. But I didn't have a clue.

This August, again in Boston, I was carefully staying away from grass, woods, nature, vegetation and didn't walk on any vegetation, but was outdoors near woods with lots of overhanging trees. I made the fatal mistake of sitting on an outdoor wooden bench under a tree for about 15 minutes (again, I didn't so much as walk on grass to get to this bench and was being very, very careful as always). The (probably nymph) tick might have been on the bench (or fell from the tree) and crawled on me then, biting me 10 minutes later as I walked down the road. (See Amy Tan's story above about avoiding wooden benches!) I got bit on the back of my neck. I again felt the unusual (which DID feel like that first tick bite 2 years ago) and brushed the back of my neck with my hand. I didn't feel any tick there and it was all smooth. When I looked in the mirror (it was hard to see the spot and I should have asked someone else to look also) I saw the faintest bulls-eye in a large red (but not perfectly circular) area. I did not think this was a tick bite and just ignored it.

not my back (got this from online), but this is what it looked like, however, my bulls-eye was even fainter

It wasn't itchy at all. No symptoms for two days. The third day I woke up with horrible flu-like symptoms: burning up, sweating, muscle aches, joint pain, quasi-diarrhea, weird feelings coursing throughout my body, heart and head, very frequent urination, strange fatigue. The bite site was burning and 3 bumps with "heads" or "blisters" on them appeared that looked more like bedbug or spider bites (in an exactly even row). I knew my ailments were connected to the bite because of the intense burning and radiating from the bite site and the instantaneous, synchronous concurrence of everything. I still didn't think it was a tick. The symptoms were awful, but I hoped they'd just go away. They didn't.

this is my back

I waited a full 3 days before I went to Urgent Care on the 4th day (6 days after the bite). The Urgent Care P.A. was kind but not that helpful (was trying to separate my symptoms from the bite, and kept talking about tularemia for which I did not have symptoms), did a "Rapid Lyme Test" that came back negative and sent me on my way with no antibiotics. I began to realize my predicament! I was going to have to suffer for weeks and take multiple tests that might come back negative over and over, and therefore I wasn't going to get treatment! The bulls-eye had now faded into the 3 bumps that were now fading (I got the pic above to show future docs). ALTHOUGH MY CASE IS A BIT ATYPICAL, ESPECIALLY WITH THE WEIRD BUMPS, LYME ACTS DIFFERENTLY WITH EVERYONE'S UNIQUE DNA/METABOLISM, ETC., MAKING IT ALL THE MORE FRUSTRATING.

I waited 4 more days before trying again to get help (getting worse and worse with horrible nights--I had to take sleeping pills and even then I could feel everything still, but at least I could get a few hours of sleep). On the 9th and 10th nights, the worst symptom of all occurred: the warmth that was radiating from the site went up my neck up into my head until my brain felt like cold Jell-o, with the pressure building up in my head on all sides and feeling like it would explode (and I'm someone who never, ever gets headaches). So on the 11th day since the bite, I went to ER where a brilliant young P.A. gave me everything I needed in 5 minutes: "So, you got bit by something and are having these bad symptoms. It could just be some disgusting bug that infected you with some disgusting bacteria, but it seems like Lyme because it's moving around your body. That's very typical of Lyme. We need to get you on some antibiotics to feel better while you get more tests to figure out exactly what you have ." (She sent my blood out to a lab for West Nile, babesiois, and Lyme which all came back negative in several days.) She prescribed 2 weeks of DOXYCYCLINE HYCLATE, which I didn't know then was exactly for Lyme (I hadn't remembered which antibiotic I was on 2 years ago), and exactly what I needed. I took the capsules faithfully for 2 weeks and immediately the symptoms diminished to about 50-40% of their intensity, but just stayed at that level. As I was about to go off the meds all together (in the end, my symptoms had reduced to 10% on the last 2 days of the DOX HYC and I was having good nights), I returned to ER and asked a general practitioner ER doc what to do if I still had symptoms. I got a terrible answer: "Antibiotics aren't like aspirin: you pop it and the symptoms go away. With antibiotics, you do the course. In this case, it's two weeks. You will still have symptoms as you go off, but the antibiotic will continue to work and your symptoms will continue to decrease." I did not know what bad advice this was at the time, and even though I was skeptical, I decided to trust the doc and the "science."

The very first night when I missed my nightly dose? The Lyme symptoms came back with a vengeance. As soon as I lay down, I could feel "it" entering parts of my upper body where it hadn't been before: my shoulders, elbows, wrists, fingers, and my heart got worse (a kind of heaviness, racing and irregular heartbeat all at the same time). The next morning, I immediately tried to get back on the DOX HYC but a different, non-Lyme doctor (not from the Northeast) who was helping me was told by a pharmacist in Boston (Boston!) that I should be on DOXYCYCLINE MONO. My doc trusted the Boston pharmacist and I went on DOX MONO for 3 days (which did nothing and I continued to get exponentially worse). After 3 1/2 days off of DOX HYC, I got back on it for at least a month. (Thank God for my understanding doctor!) It was like starting from the very beginning again--the two weeks of progress had been wiped out--but it began working immediately again, bringing the symptoms down to about 50-40% of what they were off the DOX HYC. I am presently on DOX HYC for at least a month and slowly, slowly (it seems) getting better daily (and nightly). Although it's hard to tell because of the incredible MORPHING OF LYME!

Stay tuned.

I have carefully chosen the ARTICLES below (out of many, many articles and websites) because I found them chock full of the best info!


ARTICLES:

EXCELLENT ARTICLE ON WHY SOME LYME SUFFERERS AREN'T GETTING HELP AND HOW A LONG COURSE OF ANTIBIOTICS IS THE ONLY SCIENTIFIC TREATMENT FOR LYME:
https://www.nationalobserver.com/2018/03/07/news/ticks-creep-canada-bringing-lyme-disease-and-confusion-them

WHY TINY POPPYSEED-SIZED TICKS (IN NYMPH STAGE) ARE THE MOST DANGEROUS (AND OTHER GREAT INFO ON LYME): https://www.healthline.com/health/poppyseed-size-ticks-spread-lyme-disease#6

THIS IS WHAT CAN HAPPEN WHEN LYME GOES UNDIAGNOSED FOR LONG PERIODS OF TIME. THE DOCTOR IN THE ARTICLE TO WHOM THIS HAPPENED WROTE A BOOK ABOUT HIS EXPERIENCE:
https://www.cbsnews.com/news/lyme-disease-when-it-isnt-caught-early-fallout-can-be-scary/

GREAT ARTICLE FROM THE AMERICAN ACADEMY OF DERMATOLOGY ABOUT THE 3 STAGES OF LYME AND THE IMPORTANCE OF CATCHING IT EARLY:
https://www.aad.org/public/diseases/rashes/lyme-disease

VARIOUS LYME TESTS AVAILABLE (ALSO, SOME LABS ARE MORE ACCURATE THAN OTHERS!)
https://globallymealliance.org/about-lyme/diagnosis/testing/

GOOD NEWS: CORNELL U. HAS DEVELOPED AN ACCURATE TEST FOR LYME (WHERE YOU DON'T HAVE TO WAIT WEEKS FOR IT TO SHOW UP POSITIVE AND MEANWHILE WON'T BE GIVEN ANTIBIOTICS AS YOU GET SICKER AND SICKER)--BAD NEWS: IT'S NOT IN USE YET:
https://www.syracuse.com/news/2019/09/rapid-lyme-test-developed-at-cornell-could-be-major-breakthrough-in-treatment.html