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Lyme Disease/Is this still lyme??


QUESTION: I was diagnosed about any and a half ago with Lyme after suffering for several months with debilitating bilateral hip bursitis.  I was treated by an LLNP for about a yr with oral antibiotics as well as IM injections.  After a yr I felt like I wasn't really making more progress so I decided to seek another opinion.After extensive testing it was discovered I have numerous food allergies including gluten, candida and leaky gut.  I have been working on these issues for several months.  In that time I have beendealing with horrible lower back pain around the SI joints.  I recently had a cat scan done which showed narrowing of the SI joints due to inflammation.  My Rheumatologist feels I should go on enbrel but I know for those with Lyme it is contraindicated.  I'm really at a loss as to what to do.  Could this be related to Lyme?  My Rheumy doesn't think so.

ANSWER: Dear Laurie,

Thank you for writing and I'll try and answer your questions to the best of my ability. :)

First off, hip bursitis seems to be a common issue with Lyme patients. I've known many people (including myself!) who developed very painful hip issues with Lyme Disease. I'm glad to know that you were able to find an LLNP who treated you with antibiotics for that long. There are Lyme patients in Vermont who I recently heard from that said they were given TWO Doxycycline pills, yes TWO! after they were bitten by a tick and even had the traditional EM rash (bullseye). So I'm always glad to to hear when people are treated by medical professionals who truly understand Lyme Disease.

As far as food allergies, that seems to be another common issue. Whether you had them already or developed them after you were infected with the borrelia burgdorferi bacteria, TBDs (tick borne diseases) seem to "turn on the switch" for all sorts of allergies. I went my whole life with ZERO allergies (except for bee stings!) and after Lyme, I suddenly developed pollen and other allergies.

Re: your lower back pain, I'm afraid that too seems to be a VERY common complaint amongst Lyme disease patients. I too experienced this about 5 months after I was initially bit by the infected tick; I remember the first day it presented, I was in HORRIBLE pain around my lower back and have continued to experience severe back pain intermittently ever since. I had all sorts of x-rays and MRIs done during the first year and half,  but nothing major was found. Like you, I saw a rheumatologist who suggested Enbrel but I had been told by my LLMD to ABSOLUTELY NEVER EVER, EVER take anything that was going to lower my immune system.

I have talked with Lyme patients who DID take medications like Enbrel and many are experiencing more severe symptoms because of it. Rheumatologists are trained to treat symptoms with medication and unfortunately that's all they know unless they understand Lyme Disease.  When I told a Rheumy that I had Lyme Disease and couldn't take any biologic response modifiers (aka biologics) he literally took my folder, closed it, and said "Well, there's nothing I can do to help you". At least he was honest.

Here is a link with information about Enbrel. I highly suggest you read this and understand the side effects as well as what it can do to an already compromised immune system.

Laurie, I'm not sure what part of the country you're in, but my advice to you is to get a second opinion from a Lyme Literate MEDICAL DOCTOR versus a N.P. Your decision to take a medication that could potentially worsen your symptoms is an important one and one that I would highly advise talking with a medical doctor who has experience in treating TBDs.

In summary, ALL of your symptoms are common with Lyme and it's possible that you may be experiencing symptoms of chronic Lyme. This is why I would advise against taking any biological modifiers (like Enbrel) and talk to an LLMD about your continued symptoms.

I hope this helps! And I wish you all the best,

---------- FOLLOW-UP ----------

QUESTION: Thanks Bonnie!  Your response was very helpful.  Another medication that was suggested was low dose naltrexone, do you know such about this one?  It seems like a lot of Lyme patients use it as well as those with rheumatic diseases.  I'm a little hesitant to go back on antibiotics due to all my stomach issues.  What is your opinion on herbals?  Are you able to recommend a LLMD/LLNP in the Mass/ RI area?

Hi Laurie, I'm glad I could help. I have a few additional suggestions for you.

If you haven't already done so, I would highly recommend reading Joseph Burrascano's Guidelines for Tick Borne Diseases. These are guidelines which are followed by many LLMDs and Dr. Burrascano is considered one of the most knowledgeable doctors in the country re: TBDs. You can read it at:

Additionally, you mentioned that you are in the Massachusetts, RI area. I would HIGHLY recommend that you search for a Lyme Disease support group whether they meet in person, or a local group on FaceBook. I've found so much support in meeting other Lyme patients and being able to exchange information and discuss doctors in the region is a good reason to find a "local" group versus some of the national groups. The national groups can be a great place to start, but I think it's more helpful to be around people in your area who understand the resources and practitioners available in your state.

Re: LDN or Low Dose Naltrexone, this is a medication that has been used by many of the Lyme patients I know, and I've actually heard very positive feedback. I've heard that it can be very beneficial for pain relief, as long as you aren't also taking prescription pain medicine at the same time. I personally have not tried it, but know many people who have, and I haven't heard any "negative" reports from the people who've used LDN.

You mentioned a concern about taking antibiotics because of stomach issues. There are a few options. One is IV antibiotics which bypass the stomach and go directly to your bloodstream. This option depends a lot on your LLMD, whether you can go to their office for the IV infusion a few days a week, or in other cases, doctors will recommend a PICC line or a PORT. These last options have an increased risk for infections, so this must be considered carefully.

A second option, as you mentioned, is to go the herbal route. I know of several people who have used homeopathic treatment and were able to successfully regain their health. There are two books I'd like to recommend if you're thinking of trying herbal remedies. One is by a wonderful author named Katina Makris who lives in the New England area. She was a homeopathic practitioner who was bitten by a tick and became very sick from Lyme Disease. She wrote a book called "Out of the Woods" which is all about her experiences and importantly, the homeopathic regimen that she followed. A second book is by Stephen Buhner, called "Healing Lyme". This book has an abundance of useful information about what types of natural remedies can be used and at what dosage.

The two most IMPORTANT things to remember is 1) You MUST rebuild your immune system. This means taking the proper amount of probiotics and supplements to replenish the good bacteria especially if you've been on long term antibiotics. 2) You MUST learn how to detox your body. Whether you are using antibiotics or natural remedies, you must quickly flush the toxins out of your body otherwise you will experience a herxing effect which is NOT pleasant at all. (I'm sure you're aware of this already!) There are tips on how to achieve both of these in the books I recommended above.

Unfortunately I'm not familiar with any LLMDs in your area, however, you can go to, click on FLASH DISCUSSIONS on the left side and it will take you to a page where you can request that information.

And finally, I'm sure you're aware of it, but if you haven't seen it, I would highly recommend watching the film "Under Our Skin" available on Netflix and other sites online.

Best of luck to you Laurie!

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.


I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

I have a blog called which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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