Yeah, I thought I was actually going to get this one covered in yesterday's post but I didn't. After typing out that symptoms list I was pretty much done. Really. I try to live in the moment (note to self: add "Resilience" as a topic if I haven't already have and forgotten about it.) But it was upsetting. I'm all about spreading the word and raising awareness but it does come at a personal cost. One I'm willing to pay ... but, ouch.
So, before I launch into research writing mode some quick updates from my household.
1. I talked to my LLMD yesterday for my first follow up phone visit. My LLMD is in another state as we, the pandemic state of MI, don't HAVE any LLMDs. This will segue nicely into WHY I'm chronic.
But, I truly love my LLMD and love that she pays attention to ALL of me, not just my spirochetes and other infections. She doesn't want me "dying on the vine while killing bugs." As one who grew up in a "challenging" family this feels extra good. The only performance needed is to follow her treatment guidelines. No, I don't have to keep my hair out of my face at dinner or be banished from the table. No, she will not refuse to treat me or love me. No, I am not an "ungrateful bastard." I'm that woman in MI with an M.Ed and a master's hood in a plastic bag in the garage because Lyme Disease stole that career path. (NOT that there won't be another!!!)
So. I have both the dreaded genome that renders me unable to detox mold (I taught in a school filed with black mold for years ... this was a major issue) and I have the "the worst" MTHFR gene. Yes, we both pronounce it as it sounds. Really. If one doesn't want the name of a gene spoken of in terms of "a swear" then name it something else. Please.
Yet, I am detoxing like a CHAMP. Yes, I do drink a lot of water and yes, that nifty smoothie keeps things flowing freely in the bathroom but it's the SWEATING that shocks us both. Who am I to sweat???? I could run a 5k and not break a sweat ... but now? Five minutes in the tub and I'm a veritable font.
ALL good. So very, very good that she believes it's time to "move forward" and start detoxing mold from my system now that I'm in a safe enviroment, and add the next drug. Yes, it appears to be covered by my insurance (very nice) and yes, we are now attacking Lyme as well as the three bacterial infections. YEAH. I read what I wrote yesterday. I know what's going to happen and I say BRING IT. Because when on tx (treatment!!) when one is "sick" one is healing.
There's a reason my blog is called "Chronically Living" and this is it. HEALING is a journey ... and I'm chronically healing. Chronically Living. And yes, I did get invited to attend the local TED event in September and I am PUMPED. Who cares if I haven't been vertical that long for close to a decade. If I can't handle it an ENTIRE roomful of "movers and shakers" will get to watch how Lyme Disease attacks a life.
2. I bought a jigsaw puzzle. Unlike my ME/CFS doctor who told me NOT to use my brain, my LLMD says "you've lost a ton, start building it back up." So yeah. A 500 piece puzzle my 23 year old could put together in 15 minutes is still unfinished but it's about 3/4 complete!
3. I can exercise. I'm doing pretty well in the weight lifting department and am definitely gaining ground. But it is true, I will not run again. Ever. Even after 20 years of having recovered from Lyme, my "take that, bitches" LLMD won't do aerobic exercise either. And she's a Bad Ass if there ever one one. But that's ok. A walk on the Zen side might be worthy ...
The Subject Du Jour and w/out Further Ado: The Three Stages of Lyme Disease. AKA ... There ARE No Stages. One is Acute or Chronic.
Early localized Lyme disease develops days to weeks after you become infected.
- An expanding, circular red rash camera (erythema migrans) is the most common sign of early Lyme disease.
- Flu-like symptoms such as fever, chills, and headache may also occur at this stage.
(A note from Ruth: given that we know that up to 50% of Lyme positive patients MAY develop a bulls-eye rash eliminates that as "the most common sign of early Lyme Disease.")
Early disseminated Lyme disease is the second stage. It may develop several weeks or months after you become infected and can cause:
- Skin problems, such as an expanding, circular rash at the site of the bite. More rashes can then appear on other parts of your body as the infection spreads. More serious skin problems from Lyme disease are rare in the United States but can include swelling in the earlobes and near the nipples, and severe thinning of the skin on the hands and feet.
- Joint problems, which are common and include brief episodes of pain, redness, and swelling in one or more large joints-most often the knee. Joint symptoms usually improve with antibiotic treatment.
- Early nervous system problems, such as pain and weakness in the arms and legs caused by nerve inflammation.
- Heart problems, most commonly a slow or irregular heartbeat (arrhythmia). Heart problems caused by Lyme disease are rare and are even rarer if you did not already have a weakened heart before you got Lyme disease.
(A note from Ruth: again with the rash nonsense.)
Late persistent Lyme disease is the last and often the most serious stage of the disease. It may develop weeks, months, or (rarely) years after the initial infection and can cause:
- Joint problems, such as early arthritis that most often affects the knee. A small number of people eventually get chronic Lyme arthritis, which usually improves with antibiotic treatment. But joints that have been badly damaged may take a long time to heal or may not respond to antibiotics. Joint surgery is sometimes tried in these cases.
- Late nervous system problems, such as pain, weakness, or numbness in the arms or legs that can occur when the bacterial infection has spread to the nerves or spinal cord. Bad headaches, fatigue, or problems with vision, hearing, memory, concentration, and thinking can also arise. Serious nervous system problems can cause severe headache and stiff neck due to swollen tissues surrounding the brain and spinal cord (meningitis); paralysis of the nerves that control the muscles in the face; and inflammation of the brain (encephalitis). But these problems sometimes go away on their own. If not, they usually improve after antibiotic treatment.
- Heart problems, which are rare but can occur months to even years after being bitten by an infected tick. The most serious heart problems-such as inflammation of the structures surrounding the heart (pericarditis)-usually resolve without any lifelong damage. Unfortunately, heart problems can be the first sign of Lyme disease in a small number of people who did not have early symptoms.
(A note from Ruth: This is *#*#^$*^$# nonsense. "Usually resolve?" Like how? Like with 28 days of antibiotics? Note to self: Burrascano's Treatment Protocol/How to Choose an LLMD is a must do post. How, how is it possible that stages be assigned to something that HAS none. One is either acute or chronic. Period. This ain't cancer, people, it's Lyme Disease.)
Why did I include this if I think it's CRAZY inaccurate? Because this is how doctors are taught to think and miss MOST Lyme diagnoses.
http://www.webmd.com/a-to-z-guides/stages-of-lyme-disease-topic-overview (A site clearly run by those who align themselves with the IDSA: Infectious Disease Society of America.)
In stage 1, people may have any combination of the following signs and symptoms:
- spreading rash
- aching joints and muscles and fatigue.
These signs and symptoms may disappear altogether, or they may reoccur intermittently for several months. A characteristic red rash, called erythema migrans (EM) may appear within 3 to 32 days after a person is bitten by an infected tick. The rash is circular in shape and can attain a diameter of 2 to 20 inches. EM is not restricted to the bite site and more than one lesion may occur on the body. Up to 30% of the people who have Lyme disease do not develop EM lesions, making diagnosis more difficult.
In stage 2 (weeks to months after initial exposure to the bacterium or after the first symptoms appear), some people may develop complications involving :
- heart and/or nervous system disorders including but not limited to: various degrees of heart block, nervous system abnormalities such as meningitis, encephalitis and facial paralysis (Bell's palsy)
- conditions involving peripheral nerves
- painful joints, tendons, or muscles m
- Arthritis is the most commonly recognized long-term sign of Lyme disease (stage 3). From one month to several years after their first symptoms appear, people may experience repeated attacks of arthritis.
(A note from Ruth: I have been in stage three for over a decade and don't have any arthritis. Really. Note how different IDSA "experts" can't agree on what is experienced when?)
A reader in a forum asked, "How long do Lyme symptoms last?"
Answer: "Without treatment, forever. With treatment it's a crap shoot."
I'm deadly serious ... if you have questions about ANY of this, please ask me in the comments and I will do my very best to direct you to either a resource site or individual. It doesn't matter what your age, your race, your sexual orientation, your income bracket, or religion/creed. Ticks are an equal opportunistic parasite.
So now I get to go cross THIS off my list of "what to talk about" and add in ILADS. A Lyme patient's best friend and source of all treatment that LASTS.