posted
My 18 year-old was just released from a psychiatric hospital after a 3 week stay. She has been diagnosed with bipolar 1 with psychotic features, and also ADHD.
Her Lyme tests(two)done at the hospital were highly positive for IgM, with the 41 band IgG. Amazingly the psychiatrist even said that Lyme can cause psychiatric symptoms. I am surprised that he even did the tests. It seems that some MD's have actually learned something.
This child had Lyme (highly positive IgM)8 years ago, which was treated for one month with amoxicillin, relapsed as soon as the meds were stopped, then two or three months of tetracycline, which resolved all symptoms for several years.
The mania and depression and episodes of delusions/hallucinations began two years ago. She ingested what is considered a fatal dose of lithium liquid three weeks ago, due to depression, and thank God, is alive and okay. Lithium seems to be helping.Other meds haven't helped much (Lamictal, Trileptal).
There is a family history of bipolar (my father). Her sister became psychotic and bipolar on tetracycline while treated for Lyme in 2002. We took her off after 3 months, and sanity returned completely. The sister now has seizures that involve long periods of amnesia.
I was treated for 6 years, and still have residual symptoms, but am off meds.
We all have positive ANA'S and I and the older daughter clearly have autoimmune stuff, diagnosed as lupus, with sun sickness.
Long way of saying we have been through a lot of Lyme stuff and aren't newbies, I guess, and that we are at this point unsure about whether to even do antibiotics.
If anyone has a child, teen or adult who has had serious psychiatric problems from Lyme, I would so appreciate hearing your story. I am just not sure how to proceed, and am trying to decide. Thank you.
Posts: 7 | From Northeast | Registered: Mar 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
First of all let me just say that I am so sorry for all your families suffering; and wish you all well.
After dealing with LD for several years, I developed what is considered soft bi-polar, or cyclothymia. I am treating both the lyme and the mental side of it.
I started experiencing major mood swings several times a day or at least several times a week. I would be depressed and then out of nowhere I would be on a high that would leave me completely exhausted.
I tried Lamictal and had a severe side effect from it, and am now taking Risperdal which has really helped.
I truly believe that LD causes psychiatric disorders in some ppl, thus you must treat both the mental side and the Lyme in order to get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
When I was a child, I had severe ADD/ADHD after the bite, later developed a histrionic type complex followed by bipolar disorder, OCD and now, schizoid disorder, based on my fear of large crowds and personal connections with others.
All of these feel to me that they are blown out of proportion by the Drs. For instance, I feel the real reason of the "schizoid" behavior is simply that I don't want to become a burden to others with my LD and it's hard for others to understand given some days I act and appear "fine." So I just tend to my issues solo without burdening others.
Posts: 14 | From Illinois | Registered: Feb 2011
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posted
My wife is seeing an excellent Lyme Literate Psychiatrist in NY. If you need the name send me a note.
Posts: 31 | From NY | Registered: Jul 2005
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posted
Thank you all for the responses. Her PCP seems to know that IgM can mean a new infection, or an active older infection, but also seems to think it can be from a residual antibody response from an infection that is gone. I have never heard that IgM bands can result from a resolved, past infection(I thought that would be an IgG response, not IgM).
Our Lyme doctor is away for a couple of weeks. I am asking the PCP to at least treat her until the LLMD gets back.
I wish I had more confidence in antibiotics!
Posts: 7 | From Northeast | Registered: Mar 2011
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posted
How long has she been on doxy? What happens if she stops? How long has she been on Flagyl? My concern is that we have not found antibiotics to be that helpful over the long term, and symptoms tend to return. Are you finding them permanently helpful for your daughter? How old is she now? Sorry for all the questions, and thank you!
Posts: 7 | From Northeast | Registered: Mar 2011
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posted
I hope they are aware of the study done about anti-neuronal antibodies in patients with Lyme. This is very similar to how PANDAS occurs. It becomes an autoimmune issue.
Posts: 306 | From NY | Registered: Sep 2010
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posted
NY b'ball, does that mean psych. problems from continuing autoimmunity after the infection is treated and gone?
I forget how PANDAS is treated. Antibiotics or OCD meds or both? Thanks.
Posts: 7 | From Northeast | Registered: Mar 2011
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chiquita incognita
Unregistered
posted
I am soooooo sorry to read about the extreme hardships you all have endured, together and individually! Our hearts are with you and hopefully, as one human chain, we can support and help each other along the way. I cannot offer medical advice, but do wish to steer you to some sources.
Of course we all know that lyme can cause or contribute to neuropsychiatric symptoms. So this info below is additional information (this is not a complete list, and I am not a doctor. This is only for information, take this to your doctor and ask about it, it's not medical advice).
Here is a really cutting edge article by an MD/psychiatrist about bipolar, this is truly fantastic. The doctor figured out certain enzymes missing in bipolar patients and therefore adrenalin is not properly broken down, resulting in the mood swings. Supplements can help the liver to produce more of the glutathione and other secretions necessary to aid this breakdown. And more cutting edge info:
Here is a doctor's webpage showing multiple studies about fish oils in bipolar and recovery rates related to them. He states that he chose the weakest studies on purpose for a non-biased result, but the results are still impressive enough:
There are also several sources where I read that schizophrenia (even if this is not your child's diagnosis, but the point is that there may be hope in your daughter's case too) can be caused by gluten intolerance.
Read Elizabeth Lipski, CCN MS's booklet Leaky Gut Syndrome. This is short and an excellent education in digestive physiology, and will enable you to ask more empowering questions of your doctors.
AUto-immune disorders can also be offshoots of leaky gut, and often are, according to Lipski (even if there also can be other causes).
I also read about the schizophrenia matter related to gluten intolerance in Paul Pitchford's marvellous book, Healing with Whole Foods.
The Nutrition Almanac has a section about mental illness and which nutrient supplements, imbalances have been seen to be the pattern in various kinds of mental illness. It may sound so simplistic, but in fact if the body is out of balance this way the brain can suffer impact. And it can recover.
Other sources you could read about mental illness and ADHD:
Giant reference manual, in libraries or healthfood stores: Alternative Medicine, THe Definitive Guide
Healthy Healing by Linda Rector Page, ND in healthfood stores, reference book.She also has a page about lupus with good hope for recovery.
Do you know, the more I read on this forum, I hate to say it but hte more I believe that the abx alone are not the solution. Reading Buhner's book, it seems that using the herbs to help the delivery of abx to certain areas of the body where the bugs hang out, is key to preventing relapse. Further, some of the herbs will target specific immune cells and once these are balanced again, the patients who were previously unresponsive to abx start to get well, according to Buhner.
I myself am really happy with the progress I am making on Healthy Directions' Bar 1 for bartonella. The only time when I got really sick, and sicker, was after using abx. I have had no problem wiht the herbs and progress has been really good.
I am not selling herbs and have no commercial interests.
I hope this helps.
I will be praying for you, your family and your daughter.
Sincere best wishes, CI
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease.
posted
Thank you for the information on alternative approaches. My other daughter has been cared for by an integrative/functional medicine MD, including IV;s, glutathione and both of us gave up dairy, gluten and other foods. Leaky gut was a big problem, but it came after very high autoimmune tests. Antibiotics played a big role in developing leaky gut and food reactions, so that is why we are hesitant.
The trouble with herbs, and alternatives in general, is cost. We used to have a good income, but my husband has had two strokes in 2 years.
I am thinking a reasonable course would be to start with 3 months of antibiotics and see what happens. Even if the moods are not Lyme related, chances are that the fatigue and trouble with focus might be.
Posts: 7 | From Northeast | Registered: Mar 2011
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posted
I really think with this history that you should involve a lyme literate psychiatrist.
Posts: 8430 | From Not available | Registered: Oct 2000
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I'm so sorry for this. It's bad when there's genetic predisposition and Lyme. It's like a no win situation. I have Lyme Bart and anxiety, and OCD genetically. Hoping my psych could put the pieces back together. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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