Saturday, April 13, 2013

Top 10 Things Commonly Missed When Treating Lyme (i.e. Why Am I Not Getting Better?)

I MOST often hear from people with Lyme Disease that they (1) are just not getting better or (2) have improved but such improvement has come to a plateau. (Remember, it's normal, but oh so damn painful, to go in roller-coaster ups and downs with Lyme and co-infections). Often, people I meet with Lyme ask me how they should know when it's time to try a different antibiotic, different treatment, or even different doctor?

I'll address below what experience has taught me: 10 things that I find are most commonly missed when treating Lyme. Remember, YOU are your own best advocate AND doctor, and most in tune with what your body needs. Disclaimer: Nothing in this post or site should be construed as medical advice. Each individual should consult with his/her practitioner or doctor to work out a treatment plan that is right for them.

From my experience, with the benefit of hindsight, I can say the following: When I felt as ill as I did in roller coaster fashion over the past 5 years of treatment, I can say with certainty that I OFTEN felt like I was going nowhere and would NEVER get better. But I was wrong. I never believed I would get where I was today. I bet many of you feel the same thing. But you CAN and WILL get better.

I was so ill that I remember waking up one morning and putting a pen in the freezer and was often unable to make a piece of toast. I used a wheelchair to get around the airport and stores, and I could barely make the 45 second walk to my parents' mailbox. I felt like there was a blender in my brain on high speed while on a spaceship most nights. I felt such dark depression I felt I would rather die than endure such pain. Then the trajectory improved, slowly but surely. The ride got less rocky, and the bad days got fewer and farther between, to barely there at all.

With a lot of research, annoying amounts of positive thinking and spiritual readings, I got to where I am today, which is between 85 - 100%, depending on the day! I am working again, active, and enjoying and living life.

So to answer the questions above, here are some things that I believe all Lyme patients should make sure they are considering if they are not already. Please not I am NOT advocating to address ALL of many of these issues below at the same time. Doing so would have likely have horrific consequences and you would probably be very very ill. Just make sure you keep an eye on each of these issues, with a note to come back to it at some point in your treatment (your doctor may be great, but even they can forget). This is what I did. I had a HUGE binder of labs and doctor's notes, and typed up all my notes from doctor's appointments documenting what had to be done now, and in the future. Highly recommend doing this. I was very ill but had nobody there to do this for me. If you cannot do it, see if a friend or family member or even nurse can help you with this.

Note, I had to have 1 LLMD and 1 LLND (Naturopath) to be able to get all of this taken care of, and even, then, things were missed.

I know how overwhelming it is to be your own advocate and manage your own health to a tee, but it's ESSENTIAL. If you are not feeling as well as you think you should be, some things you should ask your practitioner about or research:

1. Hormone Imbalance - Adrenal fatigue and/or Thyroid Issues (often in tandem): Can cause extreme fatigue, dizziness, depression, anxiety, insomnia, cold extremities, immune weakness, inability to tolerate stress, memory issues (brain fog), and many other symptoms
2. Viruses - Chronic Viral infections, which many if not most Lyme patients have (HHV-6, Epstein-Barr, CMV, etc.): Biggest symptom for me was MAJOR fatigue. ***My LLND noted that when brain fog was associated with fatigue, it might be more viral. When the fatigue is not related to brain fog, it is most likely something else (Lyme, co-infections, other). This distinction was needed when I got better and had to differentiate between what was leftover Lyme and what was viral. It may not present when in the very very ill stage, but I thought it was a helpful tool for figuring out some of my symptoms as I got better.
3. Candida/Yeast or Mold: Can cause fatigue, depression, irritability, memory issues, and many other symptoms
4. Heavy Metals: Can cause tingling/numbness in extremities, fatigue, headache, immune weakness, and many other symptoms
5. Adequate Detoxification Protocol: I have a list of detox supplements and ideas in my blog posts and here. When I was NOT doing a detox routine, I almost died. I initially saw an LLMD who just put me on straight Mepron and Zithromax with no mention at ALL of detox supplements and protocols and I literally felt like I was dying for 3 months straight. My mother spoon-fed me daily and I crawled to the bathroom. NOT THE DESIRED RESULT. But I thought this was necessary to get better. I had just been diagnosed and had NO idea. I had NO detox routine, and had no idea that I was herxing so badly that it was counterproductive to my treatment. My LLMD did not tell me any of this. His staff did NOT call back when I called in with these symptoms, frantic and unable to move. Needless to say, I fired him!
6. Methylation Pathways : this is the way in which your body detoxes. Ask your practitioner or an ND about the test to do this. The 'fix' is an easy protocol of 5 affordable (relatively speaking) supplements taken together.
7. Unresolved Emotional Blocks to Healing: I could do a whole post on this one. It still surprises me how much emotional stress or turmoil can affect my health. It REALLY does. More so for some than others. For me, it's a big one.
8. Homocysteine levels: Often a marker of inflammation; again my LLND used this blood test (covered by insurance, hooray!) to see if there was something else going on after Lyme/co-infections had really gone under and I was in 'clean-up mode' (cleaning up all the other remaining things - viruses, parasites, etc. leftover). If you are at a point where you are not sure what is what (Lyme vs. viral fatigue, etc)., this might be useful.
9. Parasites: these can cause a lot of issues in many people. I know people without Lyme who have parasites either acquired in the first world or traveling abroad. Taking an anti-parasitic may help; but note killing off TOO much in your body (Lyme, parasites, viruses, etc.) all at ONCE can be very overwhelming. I, personally, experienced some horrific toxicity from taking an anti-parasitic prescription for a few weeks. It took me 2 months to recover and this was in early 2012, when I was doing quite well. I HIGHLY recommend taking any parasite protocol SLOW or holding off until your body can handle it. Even my LLND, who I ADORE and respect highly, got this one wrong. He knew I was sensitive, but it was just too much for my body for some reason. Again, this is just my experience. Yours may be different. One product I use now is A-P (I can tell you where to get this as I don't want to reveal my LLND's name due to sensitivity issues about Lyme treatment). It's an herbal, and very mild.
10. Food Intolerance: I used the Body Ecology Diet as my go-to-guide for eating when I was sick. I took out all gluten, dairy, almost all sugar, and many other inflammatory foods. Doing some basic food elimination can help you see what might be irritating your system.

As great as my LLMD and LLND (Naturopathic Lyme Doc) were, there were still times when they would overlook something or make a decision that didn't benefit me. I did not blame them; they were overwhelmed with so many very ill patients and so many with different stories. I often had to use my own intuitive hits on what I felt was right to try. I also consulted with my healers, and acupuncturists on their take as well. I have a great group I have worked with in San Franciso, that do what is called IMT. If you'd like their name, please email me.

I have a lot of advice on each subject listed above, but will not go into more details here. If you have questions, please email me. Again, please note that each of us is SO different that it is often a trial and error game. This is not comforting, but know that something will eventually work. And then that may not feel so great, and then it's time to address the next thing.

I hope this post was helpful (though I am sure very painful for those of you who do not want to be on the computer or read for a long time).

Disclaimer: Nothing in this post or site should be construed as medical advice. Each individual should consult with his/her practitioner or doctor to work out a treatment plan that is right for them.


  1. Excellent advice. Just found your site. Look forward to exploring your resources.

    -Roller Coaster Rider

  2. I am in treatment for lyme. I have been for 16 months. Every SINGLE item on your list is on my list. Viruses, metals, mold/biotoxin, parasites, detox, methylation, yeast, hormone issues, nutritional issues, diet.....every last thing listed have all helped me to get better. I am now functioning at 90%. I am sometimes at 100%. I am now phasing out some of the meds I have been on. I have been doing aggressive oral and IM treatment. The first to go is mepron. So far, so good. :) You sound like you are on the right path. You WILL get there. I was an active hiker before all this as I live in Colorado and I NEVER thought I'd make it back to a trail or even the gym. Well, I have and you will too!! You seem well informed and in good care. I am sending you good vibes. Excellent words of wisdom here.

  3. Hi Christina, Thanks for writing! I actually am at 90% already, and sometimes 100%! I have been off antibiotics for 2 years and feeling like this, so am very excited. I also never thought I'd make it back to a gym or trail and have now, and it's amazing. Sending you my best to stay completely healthy! Glad you liked the post, and for the validation that it helped you too!

    1. That is awesome that you are doing so well!! I'm so glad! I will happy when I get to the point of being off Meds. :-) I am hoping you stay healthy too!! I'm glad you've hit up the trails and can live a regular life!! Xoxo!

  4. all great info & very encouraging as we have just moved & need to finish cleaning out our old home b4 sale date in 10 days, we'll keep on moving on & will be setting up new ifrared sauna soon.

  5. I cannot fine your email, but would like the information from this part of your blog (see below)

    acupuncturists on their take as well. I have a great group I have worked with in San Franciso, that do what is called IMT. If you'd like their name, please email me.

    1. This comment has been removed by the author.

  6. Hi Teresa, please email me at I just added a Contact page so people know where to reach me. Also, if commenting, be sure to leave your email address so I know how to reach you. Thanks! Mona

  7. Hi Mona,
    So vary happy you are beating this horrible Lyme.
    I have had it for 50 years and it has done its dammage on my body and brain. I am at end stage now but so glad there are at least treatments that are working.
    I now need a heart transplant (not getting one). I have had a stroke, seazures, bells palzy and so many other things. I am just gald I am coming to the end of this. I will be 65 in a few months and I look like I am 90.
    I just pray they find a cure that will work for every one.
    When I got this there was no such thing as Lyme. Stoped going to docs a long time ago. One even said I was just hysterical. I finally got tested and turned out to be Lyme. By that time the damage had been done.
    Please stay strong. I pray for all who have Lyme. Myself included. Love, Donna

  8. Hey this is a really great post. I've in the 31st year of chronic illness and I've experienced some of these disasters myself particularly not understanding how difficult it is for me to detox toxins. I've recently done a parasite detox and nearly killed myself using the product "as directed"!! I've shared this on my FB Infexionconnexion. Thanks so much

    1. I am unable to find you on FB would you be kind enough to tell me how to get there? Thank you. Clarice

  9. Clarice, blogger does not provide your contact information, so you'll have to email me at to contact me. I have no way of contacting you. This info is on the Contact page as well. Thanks!

  10. Inspiring. Just diagnosed with late Lyme and Bartonella BLO (so far) lol Getting lost in supermarker. omg yes!