Lyme Awareness Day: Do you have Lyme? Does a loved one have Lyme?

Undiagnosed Lyme is often the culprit behind chronic diseases. Do you have symptoms of any of the following: Chronic fatigue,  Fibromyalgia,  MS,  ALS,  Chemical sensitivities, Chronic yeast, Lupus, or Early on-set dementia? Lyme might be behind your symptoms. Here are a few things to do and a few things not to do when looking into a chronic Lyme diagnosis. 

What not to do #1:

Do not go to your GP. General practitioners are not trained to recognize chronic Lyme. They may have been told by Center for Disease Control (CDC) or the Infectious Diseases Society of America (IDSA) that it does not exist or they may be trying to protect their practices in the current political climate where it is often illegal to treat this devastating (but treatable) condition. Your GP will likely tell you that it’s something else, often something that, like fibro or CF, isn’t treatable and you could be stuck getting worse with this degenerative condition. 

What to do instead:

Go to a certified Lyme Literate Medical Doctor. Those who are certified are trained to recognize the differing constellations of symptoms that can make up chronic Lyme. Because of the rotten cultural climate, some doctors don’t widely advertise this specialization. The International Lyme and Associated Diseases Society help you find the closest expert to you. http://ilads.org/ilads_media/physician-referral/

What not to do #2:

Do not take the standard issue CDC test. These tests only catch early Lyme (in the first 3 weeks) and they only catch early Lyme 50% of the time. By the time the infection is systemic, Lyme is undetectable on the CDC test. I talk to a lot of people with chemical sensitivities or with MS or a host of other symptoms who say, “I was tested but my test came back negative (or inconclusive).” That’s because you are not in the early stage. The CDC blood test is completely unreliable.

What to do instead: 

Go to a certified Lyme Literate Medical Doctor! They may use the IgenX lab test. These tests can show if your body has recently been fighting a Lyme-type infection: they are indicators for Lyme but also inconclusive. With the current stage of medical research, Lyme must be diagnosed through skilled clinical assessment that can include, but is not limited to, interpretation of an IgenX lab test. 

What not to do #3:

Compare your symptoms with someone else who has chronic Lyme and decide not to pursue diagnosis if your symptoms do not match theirs. Chronic Lyme looks different for everyone. Lyme often comes along with a variety of co-infections that make the set of symptoms vary much more widely than symptoms vary with other diseases. 

What to do instead:

Any guesses? Go to a Lyme Literate Medical Doctor. This cannot be substituted for an immunologist, an allergist, a neurologist, or another specialist due to the cultural climate that results in a lack of practitioners with skills in the diagnosis and treatment of Lyme. Have you been to a LLMD and didn’t like them? Get a second opinion, or get a third! Educate yourself and be persistent. 

What not to do #4:

Do not dismiss your symptoms! This includes the following sentiments:

  • “But I don’t remember a tick!” Neither do I. Many are teeny-tiny and many fall out.
  • “But I never got a bulls-eye rash!” Neither did I. Less than half of folks with Lyme ever do. My initial flare felt like I got a combination of food poisoning and the flu. After the initial week I was deeply fatigued and had an unending migraine followed by the development of debilitating chemical sensitivities. Again, it looks different for everyone. images
  • “But I’ve never been to a tick heavy area/ an area with Lyme.” No such place!
    With global warming more ticks are in more places and more carry Lyme than ever before. I got Lyme on Salt Spring island on the Southwest coast of British Columbia in December. 

What to do Instead:

Educate yourself! This can include the following:

[It’s worth noting that the literature can be super alienating, talking about people with Lyme as “the host.” I encourage you to find ways to counter this for yourself. I talk more about this issue here: https://chronicyogiblog.wordpress.com/2016/01/19/feeling-at-home-in-your-body-is-your-freaking-birthright/]

What not to do #5:

Don’t figure that if you’ve taken antibiotics and not gotten well then you’ve done all you can do. Lyme is super complicated:

  • Lyme can be protected by co-infections that cover the bacteria with a shell. The co-infections need to be treated, sometimes one at a time, for Lyme treatment to be effective (I take an anti-biotic, an herbal tincture, and a herbal supplement for mine);
  • Lyme has a bio-film that coats it as well (I take 3 different herbal supplements for this);

    10462418_10153070877577597_296744048462295172_n
    A space-pod shaped little infrared sauna can help with cytokines.
  • Lyme can deplete your body’s resources (I take a slew of immune support supplements and vitamins for this);
  • Lyme releases cytokines as it dies that can make you feel worse than you have in your life. Your body needs help flushing these out of your system (I also take a slew of vitamins and do a bunch of detoxing for this);
  • Getting Lyme into remission can take a long time! (I have been on the antibiotic I use specifically for Lyme for over a year and am improving but nowhere near full-remission yet).

What to do instead:

Become your own expert. Some people heal by taking a combination of anti-microbial herbs and vitamin supports, other people need a variety of antibiotics and naturopathic remedies. Some people need high doses of medicine in order to fight this disease, other people can heal with very low doses. If you do well with a low dose, it does not mean your infection is “too big” or “too complex” to handle a high dose, likewise if you need a high dose it does not mean you are “too sick” to recover on a low dose. Different bodies need different tools with Lyme. It may take time to find the right approach for you, but don’t give up! 

What not to do #6:

Do not wait! Lyme is degenerative. You may have symptoms that would be reversible with treatment that will become permanent over time. I cannot describe my joy when my ability to write academically came back and I discovered that the loss of this ability was not due to permenant damage. I’ve published articles and completed my book revisions that had been in a holding pattern while my publisher patiently waited and did not cancel my contract. Seeking a diagnosis is scary but can be oh-so-worth it. Sooner is better! 

What to do instead:

Ask for support. It does matter from who: biological or logical (chosen) family, a friend, someone online. Bring an advocate to your appointments, but make them. 

This is a hard road. I know. Seriously hard. I’ve been on it for awhile. Please feel free to send me a message if you are looking for some extra support in decoding research, finding resources, and making sense of this whole mess. I mean it! 

Cer3-42.jpg
Holding everyone in this struggle in my thoughts! 

 

 

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3 thoughts on “Lyme Awareness Day: Do you have Lyme? Does a loved one have Lyme?

  1. Thank you for posting this info and research! Lyme disease is so very tricky as I’ve found from my own journey with it that started in 2013 when I was first diagnosed. My first doctor told me that I most likely had the flu and would not test me for Lyme, even though I brought in the tick that had bitten me the week before. I told him it was unlike any flu I ever had. I went to another doctor for a second opinion. He also thought it was a bad flu and said, Lyme disease is not in this area (Santa Cruz Mountains, California). I insisted that I be tested for Lyme anyway.
    A week or so after being tested (Western Blot), he looked quite surprised when the markers showed up positive. He prescribed three weeks of doxycyclene, assuring me that I would be fine afterwards. Oh My God!
    Three weeks of doxycyclene helped with the initial bouts of high fever but I was not prepared for the onslaught of ongoing symptoms that came like an avalanche! Hallucinations, voices in my head, foggy mind, extreme fatigue, joint pain, etc. etc.!
    I was not able to afford a Lyme Literate Doctor and so did my own research and talked to a lot of Lyme sufferers. There are a lot of us out here!
    What helped me most was a combination of a lot of things: Rife Machine, getting off sugar, homeopathy, cats claw, certain South American plant medicines, infra-red sauna and…patience and gentleness with self.
    As of now, I feel free of the spirochetes and main symptoms, although I’ve not gone back for any testing. My strength is returning slowly as well as my mental focus. There was a time when I could not remember the name of the U.S. President! Pretty scary!
    Anyway, thanks again Chronic Yogi!

    Liked by 1 person

    1. Thank you for your post. These experiences are far too common!!

      There really needs to be more warning as to the initial deluge of symptoms with the first round of treatment: I had an episode where my legs paralyzed while I had visual disturbances at dusk in a park that seemed straight out of a horror movie and shook me to my core!

      That’s wonderful that your symptoms have ebbed. Congratulations! My understanding is that since the tests can only determine whether or not your body has recently fought a lyme-type infection, they are not useful for determining remission… but reduced symptoms are useful! The going theory is that they bacteria never entirely goes away but that successful treatment can achieve remission. With some vigilance and attention to preventative measures (which it sounds like you are well-versed in), folks seem to be able to then keep the bacteria low enough to remain virtually free from symptoms. I’m still hoping to get there.

      It’s amazing to regain mental clarity, isn’t it? For me not being able to think the way I know myself to think was among the scariest parts of all of it. I still have many symptoms and am in pain everyday with torture level herxing every night, so the process is far from behind me. Having my brain back makes such a huge difference to my being able to get through it.

      Thanks for reading and engaging. I hope you continue to regain strength, energy, and clarity!

      Liked by 1 person

      1. So sorry to hear that you’re still having to deal with the herxing pains everyday! I feel for you!
        Yes, it is amazing to regain mental clarity. I also agree that that was one of the most scariest symptoms, experiencing the deterioration of the mind.
        An unusual symptom that I did not mention in my first comment is something I’ve not heard about in the experiences of other Lyme sufferers. I can only express it now, looking back at my experience. There seemed to by an “entity” aspect to Lyme disease. I would hear voices that I knew were not my own or anyone else’s. I’ve never suffered from hallucinations before, nor since. I even “saw” once the form of the Lyme entity. I asked it “Why are you doing this to me?” It answered, “This is what we do.” Without further words, I received that it was extremely intelligent, devoid of any human feelings. I noticed that its head was shaped in the form of a Nazi helmet. I got that somehow it “fed” on our deep suffering. This is something I felt down to my very bones! I also felt this entity stuck to my shoulder area, like a kind of goo.
        Needless to say, I’m very grateful to be rid of this symptom. Very strange!
        Thanks again for blogging this much needed information regarding Lyme Disease!
        Sending lots of love and prayers for your healing!

        Like

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