BPD May Actually be Lyme Disease
I just wanted to share with everyone that after close to 11 years of struggling with our DD12's mood issues, she has recently been diagnosed with lyme disease, which, if accurate, she likely has had for 11 years. The lyme doctors firmly beleive that her psychiatric issues are completely caused by the lyme and related co-infections. She has begun a 6-month course of IV and oral antibiotic treatment. The story is:
DD awoke in her crib on her first birthday with a 4cm x 4cm red welt on her thigh. I recall it vividly becasue it was alarming looking. We did not take her to the doctor that day as we were having lots of family over for a birthday celebration, but took her the following day and were told that she had a spider bite. End of story. My notes from her baby book, as I look back now, show that she was a delightful and happy baby (although strong-willed and a bit demanding), and at about 15 months (3 months after the suspected tick bite) started to become irritable and cranky and irrational, etc.
The story continues from there in a pattern many of you are familiar with. Diagnosis of general anxiety disorder with OCD and ADHD in early grade school (Celexa, Metadate). Raging beginning at the beginning of 4th grade. Subsequent BPD diagnosis. Trials of various mood disorder meds, settling on a combination of Lithium, Depakote and tiny amlount of Celexa. Raging gone but general state of agitation, irritability, anger, cognitive dulling, lethargy, mood cycling, etc. Consultation at the beginning of 5th grade with a fabuylous integrative pdoc who uncovered a myriad of systemic issues (yeast, gut issues, vitamin deficiencies, methylation process deficiencies, borderline hypothyroid, pyrolurria, etc.). A year of trying to treat all of that, to not much avail.
Then this past September (beginning of 6th grade), we consulted a new pdoc, who suggested we rule out Lyme disease. DD had been tested for Lyme in the past and came back negative on the tradtional testing with the ELISA and Western Blot. By chance, we ended up at what is called a Lyme Literate doc, who explained to us that there is a growing group of docs who believe and reasearch that shows that Lyme is severely underdiagnosed and mistreated, and can be the casue of many otherwise treatment resistent chronic illnesses, even psychiatric ones (MS, CFS, BPD, arthirtis, learning disabilities, etc.). Apparently, Lyme diagnosis and treatment is a controversial area, with these Lyme Litereate docs on one side and mainstream infectious disease deocs on the other. Based on the testing done by this doctor (by labs (not Quest, Labcorp, etc.) not used by other infectious disease docs), DD was highly positive for Lyme and three other tick-borne infections that commonly occur with Lyme. The doc also beleives that her symptoms present a clear case for the clinical diagnosis of Lyme, even though she does not have tons of "physical" symptoms (she has coccyx bone pain, jaw pain, lethargy, psychomotor weakness and coordiantion issues).
I have now done tons of research and spoken to many many people (patients and docs) who swear that Lyme can mimic many chronic diseases and need not present in the traditional arthritic/fever/rash way. While I remain skeptical about the diagnosis (we have ben told too many times that something would work and nothing has), we are hopeful that perhaps we are on the right path. It will take several months to know if there is real improvement, as recovery is apparently slow and the longer one has the disease the harder it is to erradicate it. However, if it turns out that her psychiatric issues all along have been caused by these bacterial infections, and if they are curable, we will be the "luckiest" people in the world but also quite upset at the 11 wasted and torturous years DD has been through.
Woiuld love to hear any stories of hope in this area, and if anyone out there knows of anyone who has been diagnosed with Lyme and presented in a predominantly psychiatric way.
MAP
Yep. I have been to Integrative Medical Conferences where the doctors have talked extensively about the neuropsychiatric presentation of lyme disease. It is difficult to diagnose, and can be difficult to treat. I talked with two people who had this problem.
It is one of many possible medical causes for the symptoms which can meet DSM diagnostic criteria. We talk about these things on the CAM board and why my own children (different issues) are angry -- WHY are the psychiatrists not acting like the medical doctors they are, and first run exhaustive testing to find the underlying biological causes of the mental symptoms. When my daughter complained of joint pains, muscle aches, and stomache pain, that was chalked up to being "mental." When my child slept excessively, that was "depression" and when she couldn't sleep it was "bipolar." But how do they KNOW? Of course it is "psychiatric" as long as it meets some DSM criteria, and nothing they know medical is accounting for the symptoms.... and they can't know anything medical unless a boatload of different conditions are looked into.
I am sorry it took this long to find the problem. I am impressed that it was a pdoc who thought to run the tests but am very surprised the Integrative MD you went to did not! I just went to my "List of Important Resources" and saw that lyme is mentioned in the first paragraph, but further down, I do have a link: Lyme Disease Information which has a lot of information.
As I said, I've talked to 2 people who have recovered from this, and you probably can find bloggers who share about their journeys through it.
One thing that I know happens with our sick children, though, is they have catching up to do after recovery, and they also can have emotional fallout from having been through the experiences they have gone through. On the positive side, I think they are more mature in other ways. They may be deeper, more thoughtful, more compassionate at a younger age. We are all shaped by our experiences.
--Jeanie aka "Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
Please keep us updated. I am hoping and praying that your daughter is on her way to recovery.
Just curious if fatigue was one of her symtoms. This is mentioned as a symptom.
Yes, my daughter has always had on and off fatigue, and of course we always chalked it up to side effects of all the meds. It isnt chronic and debilitating fatigue, but rather episodic sudden onset of general malaise and lack of energy that will last an hour or two. She also has ZERO physical stamina. Again, were told could be medication side effects. Who knows anymore. Naomi, our integrative doc DID say he thought she "had a little lyme," but that was not his first focus. It is really only this group of lyme literate doctors, most of whom are members of an organization called ILADS (International Lyme and Associated Diseases Society, I think), who go beyond the traditonal ELISA and Western Blot testing and CDC mandated diagnosis criteria. The lyme literate docs use others forms of testing, and also diagnose based on clinical symptoms even if testing is negative. If my daughter truly has lyme that is causing her psychiatric issues (which I think we wont know for sure until/unless she recovers substantially from the antibiotics over time), I feel the need to scream from the rooftops to everyone out there who suffers from treatment resistent chronic illness of any sort that you have to find the docs who are willing to take a chance and put their reputations on the line to do what is not accepted in the mainstream community. I just have no idea why the mainstream docs are so unwilling to consider CAM stuff and to asknowledge how much all of these issues are caused by systemic inflammation issues that are themselves caused by various things.
Yep. When I started writing my book it was because of a scream inside of me that wanted to come out. New docs had run tests... sleep study and extensive endocrine testing. The osteoporosis was found and numerous problems.... First, I wanted to scream from anguish. Then I wanted to scream warning and information from the mountaintops... especially after reading about all these "common" problems that the doctors ignore, even when they are "commonly associated with", "common causes", or "common side-effects".
Please do keep us updated. I wish you and your daughter the very very BEST.
--Jeanie aka"Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
Do you know anything about the alternative testing that was done? I'm curious partly for professional reasons- i'm a veterinarian and we rely on the standard testing for dogs.
--
Chris Stanley- DS 11 ADHD ( ?) ODD, Bipolar NOS
currently taking Lithium, Risperidone, Trileptal (weaning off), Melatonin
Christin: there are several labs the Lyme literate docs use, with the one I hear about the most called Igenex. Another one is Immunosciences. I am sure there are others. You can go on to ILADS.org for info.