One of my favorite presentations at the recent IMMH/Integrative Medicine for Mental Health conference was Dr. Suruchi Chandra’s Neuropsychiatric Lyme Disease talk.
Here is the description of her presentation:
“Neuropsychiatric Lyme Disease and Associated Co-infections: Clinical Presentations, Diagnostic Challenges, and Treatment Options”
Lyme disease is one of the fastest growing infectious diseases in the United States. It can remain dormant for years and then later mimic a number of psychiatric illnesses, including anxiety disorders, mood disturbances, psychosis, and autism-like behaviors. It can be further complicated by the presence of co-infections. Both the diagnosis and treatment of these infections in the chronic stage can be challenging. We will review both standard treatment recommendations and integrative and holistic approaches, including dietary changes, herbal medicines, and nutritional supplements.
Dr. Chandra started by sharing the late stage neuropsychiatric symptoms of Lyme disease:
- Depression
- Mood swings
- Anxiety, panic attacks, OCD
- Psychosis
- Violent behaviors and irritability
- Chronic fatigue syndrome
- Fibromyalgia
- ADHD and autism like behaviors
- Seizures
- Sleep disorders
Here are some of the many very interesting facts she shared:
- Lyme disease is one of the fastest growing infectious diseases in the USA (and it doesn’t seem to be only an issue in the USA)
- Not everyone recalls a tick bite or bulls-eye rash
- Lyme disease is not only isolated to the Northeast – a year ago a Stanford study found the bacterium Borrelia miyamotoi, as well as burgdorferi, the bacterium that causes Lyme disease, in ticks they sampled throughout the San Francisco Bay area
- Lyme disease may be due to tick borne complex i.e. it is hypothesized that there are multiple co-infections
- Purple rashes that look like stretch marks are common with Bartonella
- There can be maternal-fetal transmission of the disease
- The involvement of the gut is under-rated with Lyme disease and cognitive decline is a big issue
- Lyme and co-infections affects serotonin levels, due to IDO being increased
- Low zinc (and high copper) and low manganese levels are often factors
Dr. Chandra is very unique in that she uses no antibiotics, “provokes” before testing and has some very interesting herbal protocols (many that are used with malaria). She stated that Lyme disease is worth treating even if there are no symptoms, simply because of the higher risk of Alzheimer’s disease.
She uses a wonderfully integrative approach with her patients who have chronic tick borne diseases:
Here is the last slide of her presentation: Consider Lyme disease and the associated co-infections when there is any severe or atypical psychiatric disease, and use a holistic and individualized approach.
Excellent presentation! This really is the top integrative mental health conference to attend!
Here are a few of my other favorite presentations include:
- Julie Matthews’ talk on “Oxalates, Phenols, and FODMAPs: Food Substances and Diets that Impact Mental Health Conditions”
- James Greenblatt’s talk “New Information on Nutritional Lithium for ADHD, Mood Disorders and Prevention of Cognitive Decline”
- Andrea Gruszecki’s talk on “The Effects of Stress on the Gut-Brain Microbiome”
- Dr Kurt Woeller’s talk on “Oxytocin and Cholesterol – Their Interactions and Effects on Mental Health and Autism Spectrum Disorders”
I’ll share some highlights from these in a future blog post.
All the presentations were recorded and I’ll let you know when the recordings are available for purchase. These presentations are not to be missed.
Please share what you know about Lyme disease or if you have been diagnosed with one of the co-infections. Feel free to ask questions too.
Laurie says
This is fascinating about Lyme Disease. Do you know of anyone who is treating asymptomatic Epstein Barr? What are you thoughts about treating asymptomatic Epstein Barr antibodies?
Thank you very much!
Trudy Scott says
Laurie
Glad you find this fascinating too. I have been aware about the Lyme mood connection and have a Lyme questionnaire I use with my clients but this presentation really consolidated so much for me. Unfortunately Dr Chandra did not mention treating asymptomatic Epstein Barr but this article discusses an Epstein Barr/MS connection http://www.webmd.com/multiple-sclerosis/news/20060410/epstein-barr-virus-may-trigger-ms
Laurie says
Thanks so very much Trudy for the link to that article, as I have read similar information about the possible connection. My concern is that it’s probably far from ideal to have high levels of antibodies (despite not having symptoms), but I have not yet discovered an effective or relatively benign way of reducing the antibodies. Are you familiar with any effective treatments? I certainly don’t want to disrupt anything and actually start causing symptoms and make the problem worse. Thanks again!
Trudy Scott says
Laurie
This is not an area of my expertise so it would be best to find someone who works with folks with EBV.
Common sense tells me to focus on immune boosting, good nourishment (possibly an autoimmune-type diet?) and addressing any nutritional deficiencies, good sleep and living stress-free.
Laurie says
Couldn’t agree more. I try to do all of that anyway as part of my healthy-living lifestyle. Since I haven’t found an EBV expert, I think I’ll just continue to do my best to boost my immune system and hope for the best. The EBV issue confuses me, since as I understand it, almost 90% of us test positive for the antibodies anyway and if that’s the case, I doubt 90% of us make the huge commitment needed to get it out of our bodies. it appears that most of us just live with it anyway as adults.
Thanks again!
Trudy Scott says
Laurie
I just came across this excellent blog post on EBV http://thyroidpharmacist.com/articles/epstein-barr-virus-and-hashimotos
Cindy Cavanaro says
I have tested negative for every Lyme infection except Babesia came back positive.
Should I Persue this?
Whatever I have, I have had for years. I look normal but just never feel good.
Trudy Scott says
Cindy
Based on what I heard from Dr Chandra I would follow-up and address this especially since you just never feel good. What symptoms do you have: anxiety? depression? fatigue? pain? cognitive issues?
She also discussed how many people never get a positive result on any of the testing so in one way you are fortunate to have this information.
Kellie says
Hi Trudy!I was diagnosed with neuro-Lyme in January. Not CDC positive, but through Igenex. It is a crazy disease. There are some great websites to help people. Lyme disease survival and wellness; Lyme disease group; Lyme disease awareness are a few. Babesia is a malaria like infection that attacks the red blood cells and needs to be treated. It is usually seen when patient has other tick-borne diseases. I have to travel 2 hours to see a Lyme-literate doctor. Might try to go see Dr.Chandra. Thank you so much for sharing this!
Trudy Scott says
Kellie
Thanks for sharing these resources! I will be sure to check them out. ILADS (International Lyme And Associated Diseases Society) is another good one.
I’m glad you mentioned CDC /IDSA (Infectious Diseases Society of America) testing vs IGeneX.
And yes it’s a crazy disease that is not well understood. Finding a good integrative Lyme-literate doctor is key. I’m very impressed with my first impressions of Dr Chandra and look forward to future collaborations with her. Please let us know if you do go and see her.
Lisa says
Thank you so much for drawing attention to this emerging disease. I have a good friend that has a daughter that has been struggling with Lyme Disease for over a year. Many of her issues have been neuropsychiatric in nature and many of the conventional doctors are dumbfounded by condition. The CDC says there are no cases of Lyme in GA, many doctors have been unwilling to identify it as such. I will be sharing this post with my friend. It will be such an encouragement to her. Thanks for sharing it with us, Trudy!
Trudy Scott says
You’re most welcome Lisa and thanks for sharing this with your good friend! More people need to know that this is a much bigger issue than what the CDC is saying – both those affected with Lyme (and co-infections) and doctors.
Trudy Scott says
Lisa – I just found this – Georgia Lyme Disease Association http://georgialymedisease.org/ and this article “The Confounding Debate Over Lyme Disease in the South” http://discovermagazine.com/2013/dec/14-southern-gothic
Terri says
I was diagnosed/started treatment for Lyme & multiple co-infections in 2011. After 1 year, I asked the question of why my none of my symptoms hadn’t started to subside at all & then the doctor/office wouldn’t return any of my phone calls/emails & I was stood up at my appointment as it mysteriously disappeared from their books. Of course I found another doctor (several), but their blood tests show negative to all (including Lyme) so I cannot find treatment. What would you recommend? I live in northern VA.
Trudy Scott says
Terri
I’m sorry to hear you were treated this way. If you still have symptoms I would continue to search for a Lyme-literate doctor and show them your original results. You don’t say what testing you’ve had done. Just be aware that not all testing is the same and not all testing is conclusive.
ILADS has a good document on testing and treatment http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf They do advocate antibiotics for treatment.
Dr Chandra does not use antibiotics. She uses herbals and cites Stephen Buhner’s work (http://buhnerhealinglyme.com/), the Byron White formulas, Dr William Lee Cowden and herbalist Susan McCamish.
I am in learning mode myself so can’t really give too much feedback. I can share that you are going to see and read conflicting information.
Terri says
Thank you so much for your feedback. I’ve learned that not all testing is the same/conclusive. The testing I had done is/was not recognized by the CDC; therefore, insurance wouldn’t cover it. The other tests that showed negative results were/are recognized by the CDC/covered by insurance, but, of course, since they show negative, nobody will treat me. Thank you for the idea of taking my original results to a lyme-literate doctor. Do you have a good reference point for where I can find a Lyme-literate in my area?
Brenda says
Terri .. as you reside in northern Va, contact Dr. Joseph Jemsek at http://www.jemsekspecialtyclinic.com Dr. J. has been my LLMD for 6 years & has helped me so much.
Janet says
Hi, I am so confused about GABA. I took the GABA challenge a few weeks ago and it made me very stimulated to the extent that my usual dose of Melatonin with L-Theanine and other ingredients did not allow me to sleep. Then the Functional Dr. gave me a spray to spray under my tongue to try. It was a lesser amount of GABA. I cannot tolerate this and have mega problems with insomnia. What can I do? My association with him is about to expire. I need to sleep. You have to be my savior. Thanks
Trudy Scott says
Janet
I’m sorry to hear this. I don’t advocate the GABA Challenge for this very reason. Please share how much you took, what form of GABA and over what period and I’ll try and provide some feedback. Please also share details of the GABA spray and how much. Are you still having sleep problems even though this all happened a few weeks ago? and nothing else changed?
Debbie says
Hi Trudy,
Thank you so much for sharing this information.
You mentioned that Dr. Chandra ” provokes” before testing, could you explain what that is?
Thank you!
Debbie
Trudy Scott says
Debbie
Dr Chandra shared that she has her patients use certain herbal products to provoke the organism and then she has them do the Lyme tests when they get a flare-up of symptoms.
She is also looking at other labs too (showing nutritional status, mitochondrial function etc)
Debbie says
Where can I find out more information. I have had severe CFS & MCS for 30 years. I am getting ready to do Lyme testing and would like to find out more.
Trudy Scott says
Debbie
I would suggest contacting Dr Chandra for a consult. Other resources in the comments may also be useful. For example, ILADS has a good document on testing and treatment http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf They do advocate antibiotics for treatment.
Sandi says
Trudy, how can I locate Dr. Chandra. I tried to google her but could never get a real website for her office. Do you have any contact info?
Thanks for all you do!
Sandi
Trudy Scott says
Sandi
http://www.chandramd.com it’s still under construction but I believe the phone number is correct
Sandi says
Thanks Trudy
Jack says
Hi Trudy,
Based on your research do you believe a microscope
Is accurate for Lyme diagnosis? I also heard that most of
All have small trace amounts of the bacteria. Is this true?
This if one of the worse things to deal with because
The diagnosis is so difficult – and the treatments are
No joke for those who are sensitive to herbs, antibiotics,
etc.
Trudy Scott says
Jack
This is not my area of expertise and I’d defer to the experts