The Six Stages of Grief for Chronic Lyme Disease

The Six Stages of Grief for Chronic Lyme Disease

I recently read a great article called, “The Six Stages of Chronic Lyme Disease” on a blog called Lyme Knowledge (see article here), and it gave me goose bumps as I have discussed this with many other sufferers of chronic Lyme disease.The article is very thoughtful but I felt incredibly sad when reading the author’s callous dismissal of the importance of antibiotics for treatment and the associated judgement that is naturally implied with such a stance.  To be fair the author uses the term “antibiotic-only treatment” but it is a rare bird who doesn’t take multiple herbs, supplements and probiotics to go along with any antibiotic treatment.

I have tried many different protocols over the last decade of illness and can speak with lots of personal experience. I tried Doxy, IV Rocephin, shots of Bicillin, and multiple combinations (along with herbs and supplements) but after initially getting much, much worse, it was seven years before I started to improve.  I am quite sure that I would still be in a wheelchair if I hadn’t persisted with antibiotic treatment.

I may seem defensive, but the use of antibiotics is at the heart of the medical controversy that has bogged down all advancement of treatment, and even definition of chronic Lyme disease. 

Anti Chronic Lyme Doctors preach damnation and brim-fire (for the Lyme Loonies and their LLMDs) and  preach about the over-use of antibiotics.  They warn of the coming apocalypse which will be delivered by antibiotic resistant strains of bacteria and wage legal battles with the doctors who have the gall to treat people who mistakenly believe they have chronic Lyme disease. “It doesn’t exist!” they cry. Their King is Dr. Alan Steere who is the top dog at the IDSA, and he has successfully maintained the incredibly inefficient two-tier Lyme testing standard which is the major culprit for chronic Lyme disease.  [Note: I believe that chronic Lyme would be cut in half if the standard treatment for people who test positive (or see the bulls-eye rash) were given 6 – 8 weeks of Doxy instead of 3 – 6 weeks, and twice the dose to really crush it at the outset.]

The hallmark of the Lyme Literate Doctor is compassion.  Yes, they prescribe a combination of antibiotics, herbs, supplements and pro-biotics (and frequently more intense pharmaceuticals for the myriad of symptoms), and they are vilified as quacks.  But thank God for the doctors who are willing to go against the mainstream! Perhaps the King was Dr. Willy Burgdorfer who has sadly passed, or Dr. Joe Burrascano, or one of the other founding ILADS doctors, but they all agree that antibiotics are the first and best defense.

The key factor to understand with Lyme treatment is that everybody is different due to strain of bacteria, length of infection, immune system and co-infections.  Another factor that rarely gets discussed is the incredible complications that arise from parasitic infections (even benign parasites).

I always ask people if they would take antibiotics if they contracted syphilis – not one person says, “I would only take herbs!” – so what gives?

I think that antibiotics get a bad rap when people don’t improve immediately – they lose faith and begin to treatment-hop.  Meanwhile the University medical centers have finally gotten a handle on persistent forms of Borrelia, and they are finally publishing on the best combinations of antibiotics for Lyme disease (see previous posts on Johns Hopkins and Stanford).

Treatment for chronic Lyme is very personal and I agree that herbs and supplements are an important part of treatment but I have yet to meet someone who has totally recovered without antibiotics.

 

 

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7 Responses to The Six Stages of Grief for Chronic Lyme Disease

  1. Doreen Kirkpatrick says:

    I read over and over about the importance of antibiotics in lyme treatment but I cant find a dr in san diego that is lyme literate that will prescribe antibiotic? I have tried for several years. Illad gives me the same 4 dr every time i adk and all are worthless. Any suggestions?

  2. Daniele says:

    I totally agree with your comment on your article. I have myself been in treatment for five years, with antibiotic and a few pain medications and a bunch of supplements and dietary restrictions. However, there is one person who recovered without the antibiotics, her name is Perry Fields, she has a website. From my experience I would not recommend to anyone on antibiotic treatment to drop the antibiotics, but some of Perry Fields recommendations and products (particularly the oils) work wonders. I use both the antibiotics and the natural treatments. Lyme has to be attacked from all directions and with all possible means. I am 90% better than I was five years ago, I still have some joint pain and I know Lyme is still in my brain, but I can function normally now and I feel A LOT better. To all those who have recently been diagnosed with Lyme and are starting treatment, I want to tell you to hang in there and follow the protocols given to you to the letter, you will get better and better, just be patient and kind to yourself.

  3. Ciska Glachant says:

    Thank you very much for your blog, research and evidence based information. Here in France it’s even worse and non LLMD treatments are not even covered. I try to resume, translate and share valuable information to get it to the patients and the MD’s who are willing to face facts. Thanks again for your blog !!!
    Kind regards,
    Ciska Glachant
    France

  4. Tina says:

    I couldn’t agree more. After 15 years undiagnosed Bartonella and Lyme disease, it took 6 years of pulsed antibiotics before I could say I was 75% better and able to live a relatively normal life. A subsequent tick bite, 2014 and spider bite in 2015 set me back but that’s another story.

  5. Gregg Kirk says:

    Hi Jenna, I’m the author of the “Six Stages to Chronic Lyme Healing ” blog and I wanted to thank you for sharing the link to it and for providing commentary on it. I would also like to clarify a few things you mentioned about your disappointment in my “callous dismissal of the importance of antibiotics for treatment” and that it is a “rare bird” who is on antibiotic-only treatment.

    I was on antibiotic-only treatment for seven years from 2005 to 2012 and during that time I almost died several times from the treatment, not the disease. After stopping ABX treatment and going into complete remission from a combination of energy healing and herbal treatments, I have been helping hundreds of Lyme patients a year with emotional counseling, treatment support and financial aid through the Ticked Off Foundation that I started in 2015. Almost all of the patients I meet who have extreme neurological issues and are suicidal are on multiple antibiotics and pharmaceutical meds, and they routinely improve after going off of them and turning to natural treatments. Even still, I respect people’s free will when they request they stay on antibiotics. In December of 2016, I was trained by Dr. Lee Cowden, and he showed our group of doctor’s what happens to the Lyme bacteria when long-term antibiotics are introduced. You can read the details in the following blog post.

    http://www.lymeknowledge.com/antibiotics-and-treating-chronic-lyme-disease/

    I understand that the disease itself is such a moving target and that no one reacts the same way to the pathogens and treatment, so I try to be careful about respecting everyone’s opinion about what is best for them. I would also like to point out that I see a place for antibiotic treatment in the early days of Lyme infection, especially with pulse therapy, but I’m seeing more and more damage caused by them the longer patients stay on them and especially if they are not rotated in treatment.

    I just wanted to show you were I was coming from… with my own personal experience and that I wasn’t coming down hard or judging anyone who decides to take antibiotics. And I certainly agree with you that everyone is different, and to point out that now you’ve met someone who totally recovered without antibiotics! 🙂

    • Jenna Seaver says:

      Thank you Gregg for the excellent article and your feedback! Lucky you for getting to attend Dr. Cowden’s training – I have tons of respect for him and the work he does. I have seen so many people struggle through multiple “natural” treatments and am always delighted to see people actually recover – unfortunately so many people either stop/change treatment before it can become effective. My perspective is also based on personal experience and am happy to agree that we are all very different and need to work towards recovery using combinations of what works best – thankfully antibiotics have given me back my life but I agree that they must be used very carefully or can cause terrible damage. As you know, people who are in the depths of despair would rather die than continue with the debilitating pain and frustration of Lyme disease – until chronic Lyme is taken seriously I don’t see things changing much.

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