Psychosis and chronic lyme disease

Wow. Can I ever relate to your problem. We have a son who is now 40. His history is somewhat similar to what your son is all about, but in our case his symptoms were not as severe at our son's age in his twenties. We did not know it but wife and i both had long term lyme all our lives. We have been diagnosed with lyme only 1 1/2 years ago. As we see it, we both got our long term lyme from our own individual moms. This also seems to go back even further on both moms sides. We went through all kinds of problems with our son and we did not know lyme was the root at that time. At his age 21, he dropped out of college and he could not stimulate himself enough to get up to go to school. He hid this fact from us for half a year. After this, i hired him as an assistant in my home business full time, but his sick days were almost half of the time. He became very abusive towards his mom because she was full of advice as to what he should be doing. It was good advice, but because of the state of his mind, he could not take it. He became out of his own control. He developed real anger at wife which we feared could become deadly. He moved out of the house and got married. His wife could not take his mood swings, and in retaliation to this, one day he kicked her and her belongings into the street. He found another woman on the internet and he hooked up with her and within the year they had a baby. We were not informed about the baby son's arrival and when we asked him why he failed to let us know, he ended up taking us to court for threatening his life and safety. We fought this and we were not issued a peace bond, but all personal contact was lost. After working with me, he had two more jobs for the next 3 years, but at the end of those, he gave up looking for work. He went to many doctors and they assessed him as unable to work and he got a government pension for being disabled and meantime another son was born to him. It has been 12 years of no contact with him and he is living off the welfare system provided for the needy. He refuses any attempts of contact, and he moves often so that we now do not know where he lives.

Since becoming aware of our own lyme, we can see how lyme has woven a deadly path through wife's family. It seems that her strain produced many cases of mental illness, suicides, in her uncles, cousins, etc. On my side, this lyme has led to alzheimer claiming both my mom and my grandma early. I am in treatment for lyme as i do not want to follow that same fate. Any more aggressive methods to contact have led to him reporting us to the police and the threat then arises that we may be charged for stalking, and we definately do not want to have that happen.

Anyways, with our diagnosis of lyme, it is imperative that health officials get to him but how does one inform him that he may have lyme and he should get tested. We have tried letting him know this by posting messages to his door but last February he split with his woman, moved, and now has custody of the 2 boys. Where he is, we have no idea. We have tried to let him know that we would cover his full diagnosis and possible treatment for lyme if he would just get tested but we do not know if that message reached him. It is all so sad with us not knowing our grandchildren at all.

There is a somewhat parallel story regarding our daughter who is 3 years younger than him, but i will not go into that story now.

Getting back to today and to your problem, as i see it, because of condition of his mind, your son has developed a condition called anosognosia. What follows is a copy of the text re anosognosia on the web site
http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Schizophrenia9/Anosognosia_Fact_Sheet.htm It is the site of an organization called NAMI or National Alliance on Mental Illness.

When a person cannot appreciate that they have a serious psychiatric illness, a tremendous challenge to family members and caregivers follows. about one-half of people living with schizophrenia, and a smaller percentage who live with bipolar disorder, have this clinical feature. Individuals with Alzheimer's disease and dementia also often have this feature. The medical term for not seeing what ails you is anosognosia, or more commonly known as a lack of insight. Having a lack of awareness raises the risks of treatment and service nonadherence. From the person's point of view, if they feel they are not ill why should they go to appointments, take medication or engage in therapy?

Why can't a person see what is so apparent to those around them? The best thinking indicates this is a core feature of the neurobiology of the conditions. Frontal lobes organize information and help to interpret experiences. In conditions like schizophrenia and Alzheimer's disease, frontal lobe difficulty is central to the neurological processes that underlie the disorders. Psychological denial is not the reason for the lack of insight in these illnesses.

Efforts to get people to see that they are ill are frequently fraught with frustration and may be met with denial or anger. Approaching the person in a supportive way will be beneficial for your relationship. Finding out what goals a person has (for instance getting a job, forming relationships, living independently) can be a good place to start engaging in next steps. Check to see if the service system has outreach workers who work on engaging people who lack insight. Working with the person's goals does not mean you have to pretend he or she is well. For example, if the person applies for disability services, encourage the doctor to review the diagnosis; getting a person to agree to disagree can be a first step. You don't need to argue about diagnosis to have a person participate in-or respect-basic household chores and rules.

There are situations where a person's lack of insight can, at times, create dangerous situations. This combination of no insight and dangerous acts often requires intervention. In more than 40 states, there are laws for Assisted Outpatient Treatment (AOT), also known as outpatient commitment. AOT status requires a person to engage in treatment and gives the state authority to bring the person to a treatment center if they do not. All states that have these laws have protections and a process for assessing whether this intervention is appropriate. In most states, doctors are required to submit an affidavit of the person's state and the reasons for the requested AOT status and a judge decides.

NAMI has active support groups all across the nation and local NAMI members may have information on outreach services for service engagement or doctors who are interested in this issue. You do not need to worry alone with this difficult situation.

Now, based on our own experience, i suggest the following for you. If he leaves your home he becomes independent and as he is not a minor any more, if he decides that he does not want you in his life, then all he has to do is let the government know that he is asserting his rights to not have anything to do with that. I would therefore tone down my ultimatum to evict him. Instead, i would work at finding a lyme knowledgible naturopath for him. I would clue this medic as to what is going on, and i would then use all powers of persuasion to get your son to see him/her for betterment of his health via died and supplements. If this professional is alerted to what is going on, then maybe a treatment plan using herbals and supplements can be started and such a treatment can be just as successful in treating his lyme and thus reversing some that damage that has been done to his brain. I wish you the best. I apologize for this long post. xfmlg

Chicago 10. I don't know if you have read my threads, and many don't appear anymore I guess unless they are under the specific topic. My son is 16 and was infected 2010 and got a knee swell, my other son a rash (same tent in scout camp, same treatment when discovered) Older son, 22 is ok - so far, will not follow ASP Protocol to stay safe in spite of seeing his brother. Younger son recurred in 2013 sometime, hard to tell when it all really started. He was changing in 8th grade, on computer more, angry, grades sliding. By last fall, was raging, beating himself, basically nuts. We thought behavioral. Took him everywhere AND his blood work which was through the roof from just LabCorp!!!!!!!!!!! All said "he was cured" - yeah, right.

So it's been the year from hell, shredded our family, our marriage, etc. I now know a couple of people on line here "personally" and a couple from "the hood" here at home with raging daughters.

If you would like, my email is up there if you look under members, I'd be happy to walk the walk with you and try to help your son. Not sure you want to just post here.

My son has stopped raging - seven months on protocol - but is still on home instruction. He could have been top 10 in HS, star in the shows / productions in school, insanely amazing SAT's, popular... that is who he was. Now, friends are gone, he's barely getting home instruction done, but he smiles and jokes and laughs and says thanks when I bring him food, meds, herbs, detox and I could care less how long he takes to fully come back as long as I get a smile or a hug and my real son is back!


I don't know if it really would have happened, but I was terrified it would move to his automated nervous system like alzheimers and kill him.

Post Edited (Lovemychildren Mom) : 12/25/2014 9:03:13 PM (GMT-7)

Hi Chicago,
Welcome to our community!
First of all, I'm so very sorry for what you and your wife have been through and for what your son has endured up to this point. While I have experienced many of the same symptoms as your son from what you have said, they severity of my symptoms were not as bad. I had been infected at the age of 7 and didn't get effective treatments until the age of 47. There were many months where if my husband didn't tell me what to do each day, I couldn't figure it out on my own. I had severe cognitive dysfunction and couldn't even follow written or oral instructions, or follow a pattern of any sort. Scary times, but I - and others - have made it through.

Having come through the things that I have, I have a slightly different thought on all of this - what does your son want? What does he not want? At 22, although we are still quite young, we feel like we should be in charge of our own lives. If you can work with him, it might result in a better outcome. All you want is his healing and you both know he is ill.

As you've seen, you won't be able to force him into anything, so what does he want? You said he had a mental break - does he understand that he has infections that need to be treated?

And you should be aware that getting your son in treatment with a doctor that isn't ILADS (International Lyme and Associated Diseases Society) trained would be a disaster most likely. If they weren't keen to stick it out no matter how long it lasted with his treatments, besides not having the level of training the ILADS trained doc's have, it would mean having to find a new doc later down the road.

All, thanks for your comments. It's difficult to say what our son wants. He has no social life anymore. Since his first break 3.5 yrs ago, he hasn't seen any of his friends from high school or college. He lives with my with my wife and I and spends most if not all of his time in our home. He sees his 2 siblings when they come over and our friends but does not interact much. He doesn't work, is on disability and is isolated by his choice. Since being diagnosed with Lyme 3 months ago he now refuses to go to the family therapist, case manager or his psychiatrist or the ILADS doctor. Since he got the news that he has Lyme, and that the antibiotic and dietary protocol could take away his voices it's as if his psychosis has taken a stronger hold. He continues to take the Latuda,Olanzapine and Cymbalta he's been prescribed. It's his doctors hope that they will somehow reduce the psychosis. We are in discussion with his doctor about whether or not an intervention of some sort might be in order. We understand that he may have a desire to have some control over his life but he can't focus or engage. He has an infectious disease, he knows this, but says he wants to do it his way, but is unable to articulate a plan. Meanwhile, it's maddening to us to have him do nothing and know that the Lyme and it's effects on him will only get worse. Has anyone else dealt with this or have suggestions on how we can break through it to get our son on Lyme treatment? We have a refrigerator full of the antibiotics and supplements.

Chicago10 (and Lmc Mom)—

You already know that you're dealing with the psychosis of a sick mind. It is not your sons making these decisions, it's the infection. I lived my entire childhood with an older brother who had severe issues growing up and my parents did everything they could—except take charge. They didn't know any better and allowed him to run the show as he got older, because they just wanted to feel like they were being helpful and ran out of energy to argue. In retrospect, I know they wished they had deemed him mentally incapacitated and obtained power of attorney (which can have its own challenges).

And I agree Lmc Mom—you are such an inspiration. Not only does your son have a fighting chance with you as his caregiver, I am convinced you are building your future relationship every day. It is a very very difficult journey (I watched my mother do this for 40 years with my brother) but I guarantee you, one day he will evolve and will recognize your heroism. He will always love you—but he will eventually see that you saved him.

A 22 yr old is an adult so it's clear you are in a tough spot, Chicago10. Do you think he would be receptive to joining the forum here and reading conversations about other's experiences?

-p

LMC Mom - you are amazing for what you have managed to accomplish with your son - NEVER forget that!! This comes from those that understand what you were dealing with.

And, see? I'm not the only one that believes this. You have worked hard for your son, and you have made significant progress!!!

Thank you so much, LMC Mom!! I too hope that today is a good day for both you and your son!! We all have good days and bad - with and without Lyme.

A long, long road indeed. No, his siblings have tried to connect and reached out. He has pushed them away as well. Causing much frustration and sadness on there parts. His psychiatrist called today and suggested that perhaps we should try court ordered guardianship. He said we would make our case to the judge that his judgment is impaired do to his mental illness and confirmed lyme disease diagnosis. Not sure how he would respond to this but it seems like it's our last resort. Has anyone had experience with a court ordered guardianship? How has that worked out for you?

Thanks happyjo that's a good suggestion and one that just might work with my son. So much of the past 3.5 yrs have been about navigating and maneuvering around his mental state. Will keep you posted.

Happyjo, that is a perfect suggestion! I"m always blaming things on the school, not giving him any specific names, but that they make the decisions (and really, for the most part they do, but then they turn around and blame the dr. - don't want their legal hands messy) and I don't like to blame the doctors! He NEEDS them!

Traveler, I would have never thought of that - yes, need to be careful there, what a mess that could be.

Thanks, he's on a minimal - weakest dose of prozac for body movement and prazosin for intrusive thoughts. We have a bag full of the crap the other drs. gave him for OCD, ODD, TICS and Bipolar. He hid them, threw them out, raged, etc

So basically this dr. (was pres. of ILADS in the past) gave him the small doses of these two for the last 7 months. I expect he will be off of them by spring as he is so much better psych . wise. I personally did not want him on much as they can do a job on your body. I preferred the herbs from the LLMD

Both men are wonderful and saved our lives. It should be pretty easy for him to come off since the doses are so low, as long as we stay the course of the protocol for real healing, not masking symptoms.

I was lucky I guess that I figured it out in about 7 months, not years - less time for him to be suffering, but every day was like forever!

I'll keep you in mind though, I read Cure Unknown and saw Under Our Skin - Klinghardt is the best - my neighbor has been out to him twice in life, but costs a fortune, maybe practioner is cheaper. But Dr. B, ex pres of ILADS has practiced and done this 42 years, so we should be ok. He's published all over the internet and speaks at Lyme conferences with Burrescano.

Thank you for your good wishes - they mean so much to me!

Also personality changes are DOCUMENTED SYMPTOM of lyme. Do a search on it and you will find the disease can present this way:

What about psychological symptoms? Lyme disease can also cause startling changes in personality and mental health, including depression, self-mutilation, and panic attacks, says Leo Shea, PhD, president of the International Lyme and Associated Diseases Society. "There can be a decline in processes of brain function—attention and concentration problems, memory problems, and the inability to deal with multitasking." How? Lyme disease causes increased pressure in your head, and blood can't flow well into a high-pressure zone, says Andrea Gaito, MD, a New Jersey rheumatologist specializing in the treatment of Lyme disease.