Friday, April 19, 2013

The Stages of Lyme Disease AKA There ARE No Stages; One is Either Acute or Chronic.

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.

Stage One:

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.")

Stage Two:

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.)

Stage Three:

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.

Reference: (A site clearly run by those who align themselves with the IDSA: Infectious Disease Society of America.)

Stage One

In stage 1, people may have any combination of the following signs and symptoms:
- headache
- nausea
- fever
- 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.

Stage Two

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

Stage Three

- 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.


  1. Wow. It's amazing the amount of knowledge you have amassed over the years and how much time and effort you have expended to get relief. You are truly a hero and quite inspiring. Praying for continued improvement and health...


  2. Thanks, Jenna! Lyme is a formidable foe. If caught early one can have a pretty normal life again. Mine is forever changed, not necessarily for the worse (long term) but it's a wild ride!

    I really, really appreciate your prayers. I do believe I will see great improvements!

  3. Ruth, Just read through several posts, including your brave expedition to restaurant land. OMG it made me laugh and learn a ton about what you and those with Lyme's go through on a daily basis! I have an older friend in his 70s now who went through Lyme's disease some years back and somehow had the strength to keep working as the local pizza delivery man- he did dishes and trekked up condo stairs, how the ?!?## did he do it? I remember he could hardly get out of bed some days. Being as flaming as he is/was, it might have had something to do with all the cute boys working in the kitchen... ! He was definitely chronically alive back then! He has since lost his will to live sadly, but even during his disease years he was a powerful force in the community down in Carolina Beach, NC giving away his paychecks to those in need and sitting with mentally and physically addicted people for days on end, talking to them and loving them as they were and giving them hope. It is amazing to see the life force that shines through the pain. And kind of puts life into perspective for the healthy (or relatively more healthy) friends and family around you! We are capable of so much more than we can even dream or hope for, what a wonder! I hope you keep writing. It is a wonderful gift you have.

    Technical question: 'I have both the dreaded genome that renders me unable to detox mold'... WHAT? You get tested for all this too with Lyme's? Caught my eye because I work in a leaky old medical building and there was a leak above my desk for MONTHS this winter... I get migraines and very nauseous/pukey whilst sitting at my desk speaking to clients, go home and sleep it off and then feel fine. I am the only one who reacts that way while sitting in that room. FINALLY after lots of insistence on my part my employer says they are going to test for mold... makes me nervous about what could be going on inside my body. Mold is nothing to bat your eyes at...

  4. Hey Kel ...

    People are diagnosed at different times during their disease. I now know I worked for YEARS w/Lyme wondering about all my imaginary symptoms until I literally could no longer get up.

    Re: techie stuff. My first area of medical research was mold. I read, "Desperation Medicine" by Dr. Ritchie Shoemaker" and then his "Mold Warriors." I knew I was reading about myself and flew to MD to meet him. I was tested there but one can do a preliminary test online for about $15 at

    We'll talk more ...

  5. Hi Ruth,

    I got bit by a tick back in 2004 (I was 21 years old) and had the whole red rash, fatigue, etc. I went to my GP and she told me "well it could be mono, or it could be lyme." Turns out it was lyme. I got treated for I think a month or two? My memory is complete crap by the way but I think it was one to two months. Went for a blood test at the time and came back clear.

    Just recently I've been feeling really not right. Lots of anxiety, lethargic, losing weight (even though I don't exercise and eat badly), and symptoms that seemed like a hyperthyroid problem.
    So my GP sent me in for a blood test, check my vitamin levels, and also...and this surprised me...a lyme test.

    I had no idea it could come back. So I started doing some online research. I knew once you had lyme it would always be with you. But at the time I had no idea it could possibly resurface and cause symptoms.

    I got a call back from my GP and they said that my lyme might be going from acute to chronic? Again, I didn't know that was possible, or really know what that means. And they want me in for another blood test in about two weeks. At that point I guess they'll run some different more specific tests?

    This just happened today and I'm not sure what to do. I mean, regardless I'm going for that testing. But, can lyme go from acute to chronic? Why does that happen?

    Thanks for any advice,
    - Danielle

  6. Hi Danielle,

    I'm so sorry to hear you're symptomatic again!

    From what I've read acute Lyme is promptly diagnosed and treated with ILADS appropriate antibiotics until symptoms resolve. Did you feel your symptoms resolved w/in that time frame?

    Chronic Lyme is different ... most patients who are not diagnosed promptly go years w/out treatment leaving them "chronic."

    Lyme Disease is a clinical diagnosis and testing, while not reliable, MAY be used to support a diagnosis. The fact that your physician thought to test you a second time for Lyme is telling for one would couldn't distinguish between mono (easily tested for) and Lyme Disease.

    I'm glad you're seeing a doctor. Is there a chance you could see an LLMD (Lyme Literate Medical Doctor?)

    Best wishes and here's a link that does support that one can go from acute to chronic Lyme Disease.

  7. Thanks for the well wishes, I appreciate it!

    It feels like ages ago since I was treated but I thought I remember feeling better afterwards. Three things I do definitely remember was a little ways into the start of the antibiotics I was noticing a muscle twitch in my lip whenever I smiled, like it would have a mind of its own(which might have been a side effect of the meds).

    I was so worried that it wouldn't go away. Secondly, I was dead tired and my throat was super sore.
    And all that cleared up after I was done with my treatment.

    It's only been this past year or two that I've been feeling really run down. Like I would have to take a nap in the middle of the day and my anxiety is much worse. And my memory as I mentioned before is just the pits.

    So I don't know if it was a matter of I was treated but it wasn't enough, or it worked but something triggered a relapse. I've been reading one possible theory that high stress or illness can make the lyme symptoms resurface. Now whether or not my anxiety was the cause of this or is a symptom of this, I can't say. But it's something to mull over at least.

    I've seen LLMDs mentioned here and there but haven't looked into one yet. I think depending on how all this goes I'll seriously consider checking one out.

    Thanks for the article link, gives me even more to mull over. And I always believed arming yourself with knowledge is one of the best defenses.

    1. I do, too. When it comes to Lyme and its co-infections one has to absolutely be one's own best friend and advocate.

      It's not an easy road to walk ...

      Best wishes!

  8. I have a question...Have you ever used infra red sauna to help with detoxing? I have read that the toxins bypass the liver and kidneys and exit through the skin. I am looking for ways for my girls to detox--I believe at least one, if not both of my girls, cannot detox biotoxins. I still need to test their HLA, MSH, and VIP to get more answers and clues, but based on what I have read and their symptoms, they are not able to detox.
    Also, do you know the specific name of the HLA test I need to get done? My doctor's office needs to know the test name, but I am having trouble finding it online.

  9. Yes, I do use an infar-red sauna every day.

    One detoxes four ways:
    Bowel movements
    Sweating (Sweat contains MANY more toxins than anything else.

    While I don't know the specific name of the test your looking for I'm pretty certain it's listed on Dr. Ritchie Shoemaker'site:

    Best wishes to you and your girls!