late-stage neuroborreliosis

[PeterG]

I am trying to think of a way to word this so I won't come across like I am asking for medical advice (because I am not. I do not want medical advice).

I am just wondering if any of you have had experience with late-stage neuroborreliosis? I just tested positive for Lyme disease through Bowen Research. They offer a test that actually detects the antigen as opposed to relying on antibodies like the majority of tests.

The majority of my symptoms have been psychiatric up until recently when the fatigue/bladder problems replaced the bipolar symptoms.

I have been diagnosed as having depression and then later bipolar disorder. As well I have received diagnoses of chronic fatigue syndrome and Interstitial cystitis (I am female 26 years old). At present I am currently totally debilitated by sleep problems and urinary frequency that keeps me awake at night and horrendous fatigue. I have been sick for 2.5 years trying to find out what is wrong. I have probably had this since I was 12 years old.

I am wondering how typical my story is in your experience? Again, not looking for medical advice just wondering if you have dealt with "chronic" late-stage neuroborreliosis in your profession? It is my understanding that a great many Lyme patients are labelled bipolar etc only to find out later it was Lyme disease. I do not think my story is exceptional in this regard.

Thanks for reading.

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[Doc Samson]

I am trying to think of a way to word this so I won't come across like I am asking for medical advice (because I am not. I do not want medical advice).

I am just wondering if any of you have had experience with late-stage neuroborreliosis? I just tested positive for Lyme disease through Bowen Research. They offer a test that actually detects the antigen as opposed to relying on antibodies like the majority of tests.

The majority of my symptoms have been psychiatric up until recently when the fatigue/bladder problems replaced the bipolar symptoms.

I have been diagnosed as having depression and then later bipolar disorder. As well I have received diagnoses of chronic fatigue syndrome and Interstitial cystitis (I am female 26 years old). At present I am currently totally debilitated by sleep problems and urinary frequency that keeps me awake at night and horrendous fatigue. I have been sick for 2.5 years trying to find out what is wrong. I have probably had this since I was 12 years old.

I am wondering how typical my story is in your experience? Again, not looking for medical advice just wondering if you have dealt with "chronic" late-stage neuroborreliosis in your profession? It is my understanding that a great many Lyme patients are labelled bipolar etc only to find out later it was Lyme disease. I do not think my story is exceptional in this regard.

Thanks for reading.

Neuroborreliosis has been linked with a multitude of psychiatric symptoms across all domains (affective, psychotic, OCD, etc.), but the evidence of a specific causality still remains fairly nebulous. Given that so many people in endemic areas have a h/o Lyme infection, it stands to reason that a number of them would also develop mental illness based on genetic loading or other factors that would've occured whether they got bitten by a tick or not.

 

[PeterG]

Neuroborreliosis has been linked with a multitude of psychiatric symptoms across all domains (affective, psychotic, OCD, etc.), but the evidence of a specific causality still remains fairly nebulous. Given that so many people in endemic areas have a h/o Lyme infection, it stands to reason that a number of them would also develop mental illness based on genetic loading or other factors that would've occured whether they got bitten by a tick or not.

Yes there is a lot we don't know about Lyme (a whole lot). What does h/o Lyme infection mean? I just looked up - it means history of?

 

[soaringheights]

Yes

 

[PeterG]

No one seems interested in Lyme disease

 

[Anasazi23]

According to Kaplan & Sadock, you can use specific psychiatric medications to treat individual symptoms. This of course assumes that the patient is undergoing their doxycycline course, which results in a 90% cure rate. Not sure if this rate is the same for late stage.

Lyme screening for every depression or bipolar complaint is impractical. Unfortunately, unless the specific screening questions are asked, or unless a clinician sees the manifestation of this condition, it usually remains low on a psychiatrists' differential. This would most likely change if the patient lives in or visits an area where this is endemic.

 

[whopper]

I had a patient come into the psychiatry ward, and it turned out he had late stage Lyme disease. His symptoms were confused for psychiatric ones. I only found out about it because his symptoms seemed strange. They didn't seem like run of the mill depression symptoms and I kept thinking there had to be some type of 2ndary cause. I went out of my way--about an extra 3 hours of interview & a family meeting to figure this one out. (this is not the norm. Most inpatients get a 30 minute evaluation, and then only about 5-10 minute evaluations per day thereafter)

This is a particular disease that has strong psychiatric implications. It however is not something that psychiatry in general treats. Psychiatrists should though be on top of this disease to make sure we don't mistreat pateints (e.g. continually give them an antidepressant due to their "lack of energy" and "low mood"--when the cause is not an intrinsic depression but in fact Lyme disease).

I would refrain from talking too much on the subject. Again it is not typically our field and the other fields such as Infectious Disease better handle this area. I will though say that several patients who come in with "chronic fatigue syndrome" or other symptoms you mentioned may not be psychiatric but in fact from Lyme disease affecting the nervous system, and therefore, psychiatric medications, if used need to be done so with the knowledge that the psychiatric symptoms being treated are 2ndary to Lyme disease.

I would also reccomend psychiatrists in areas where Lyme disease is endemic to keep this in mind when diagnosing patients. I hate saying it, but the above patient I mentioned went through 3 doctors before he got to me and no one properly diagnosed him. (Resident makes the right diagnosis and its missed by 3 attendings--I gave myself a narcicistic pat on the back).

To my knowledge, the practice of keeping ourselves updated on this particular medical problem and several others that have psychiatric sequelae has been lacking in our field. I say this not to put down our field but as a wake up call to remind us to do better jobs. E.g. Wilson's disease can present with psychosis, but several psychiatrists I've seen never talked about it ever. One of the few medical problems we actively consider-thyroid disease from my own experience has been missed by several doctors when considering a possible medical cause to a mood disorder. I saw one particular patient that was on zoloft for 10 years with no benefit---and he had severe depression. Turned out his doctor never once checked his thyroid levels, and on top of it (and it makes the case even more sad) is he had every single symptom of hypothyroidism you can imagine--even the rare ones such as hair changes, and it was still not considered. Then adding even more insult--he was only tried on Zoloft. Standard of care dictates that if one antidepressant doesn't work, you need to consider a different one, or augmentation therapy. The doctor only kept with Zoloft, and eventually reached the maximum dose but kept it there for 10 years. Incredible. I sometimes wonder what the heck is going on with some people when we residents can get our butts kicked for the slightest mistake. (The doctor in question was not one affiliated with my program).

If I had another patient where I suspected Lyme disease, I would order the initial tests for workup--but if positive, I'd refer them to their primary care doctor to further treat the problem. I'd only give psychiatric meds with the explicit and distint understanding with the patient (and of course document!)that the psychiatric symptoms they suffer may all be due to the Lyme disease, and it in fact may even be inappropriate to treat them with such until the Lyme disease is resolved. I would also keep in contact with the doctor treating the Lyme disease.

Finally, Lyme disease--well there's a cure but there's also permanent sequelae, and the cure process can be long and hard. Psychiatric meds aren't exactly out of the question, especially when other diseases can occur such as fibromyalgia as a result of the Lyme disease, and several psychiatric meds are effective in the treatment of such.

 

[PeterG]

Thank you both for your posts. Whopper- excellent post. Very interesting. Thanks!

I live in Canada where patients are constantly told "oh you don't have Lyme disease it's so rare." The Canadian gov't seems to be really in denial that there is Lyme here. I think I contracted mine on the East Coast in Nova Scotia.

In the past 2.5 years trying to figure out what could be going on with me I saw 20 doctors and none of them mentioned Lyme testing. It was finally suggested to me by an American nurse practitioner who specializes in Interstitial Cystitis.

 

[whopper]

That bugs me. Where I am in NJ, Lyme disease is very endemic. IMHO, it should be actively asked about with any patient, and education should be done extensively. Lyme disease isn't around much in Atlantic City, but all the surrounding surburban areas--its highly prevalent. One of the local towns in my hospital's "jurisdiction"-well people say everyone in that town has gotten it.

2 people I knew got it late stage. Both I lost contact with--but both had permanent long term neuro sequelae. If that's your case, you may have some difficulties, but at least its been diagnosed properly.

 

[PeterG]

Thanks for your reply. Right now I am just in the process of trying to figure out how to treat it and am hoping I don't have any permanent damage.

Take care.