Lyme and mental health issues

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Venetia
New Member


Date Joined Feb 2018
Total Posts : 5
   Posted 2/27/2018 2:59 PM (GMT -6)   
Hi Everyone, new here looking for suggestions for my DS15. He has recently be dxd by an llmd with Lyme, was neg on the CDC test, but has several known tick bites. He also had high myco levels. Problem is most of his symptoms are psych issues and he is currently inpatient for the 6th time in a year. His llmd has been treating him with abx for two months now, but I just found out yesterday from the inpatient doc that the llmd doesn't think his psychosis is related to Lyme. So now the theory is that he has some unknown psychiatric disorder and lyme.

This past year we were treating just for psych symptoms. He has been dxd with ADHD, anxiety, depression, psychosis and bipolar. He has intrusive thoughts, daily headaches, neck and back pain, some tremors, loss of interest in everything, trouble sleeping and is unable to focus. He hasn't been in school in a year now. Treatment has never been effective and no one really knows what is going on. When we stumbled on lyme I thought we were on the right path. I am so devastated that this doc doesn't think this is all related. And just because all that isn't enough, he has substance abuse issues.

I often feel like giving up, but how can I just leave him to a lifetime of mental health issues and hospitalizations? He often talks of overdosing and believes that he will die from that. I left the meeting yesterday with him holding back tears and mad at me for being in the hospital. I just need something to go right for him, but I can't seem to get him the help he needs. Anyone have thoughts or suggestions?

NotQuiteAntonio
Veteran Member


Date Joined Jan 2015
Total Posts : 1134
   Posted 2/27/2018 3:23 PM (GMT -6)   
I've experienced some of these things. I still do. Though, I can't speak to how they compare in severity to your loved one is going through. I've always been able to tell myself it's relative to my infections, and that I need to just focus on getting better as much as possible.

I've thought about seeking psychiatric therapy, but I've yet to follow through. I don't want to go through a phase of explaining everything to anyone who's completely in the dark, making an issue out of it, before we're able to get onto treating me. I can totally see a psychiatrist trying to get me to look at it as solely a mental health issue, rather than my having a very physical illness affecting my mental state.

It might help him, if you're willing, considering you find the right provider. Though, one to thing to question, at this point, whether these issues are r/t the Lyme disease or not, how will be able to differentiate?

You'd need the infections to be resolved in order to see what, if any, psychological conditions persist.

I mean, I guess, I don't know much about the matter. Diagnostic methods involved. Can you run a blood test for something like manic depression, schizophrenia, etc.? They're clinical diagnoses, correct? That's been my assumption.

What are you doing as far as treatment for the Lyme et coinfections? Consider alternative medicines, if anything, if your LLMD hasn't prescribed anything yet. I know I feel a lot better mentally when treatment is doing something. Not just because I feel better, but because there's an actual change in my brain chemistry, levels of inflammation, etc... which affect the way my brain works.

There's a reason I go from spending nights thinking about spilling my brains out and then talking about how grateful I am to still be alive, how I need to keep fighting, etc.

I don't mean to make it a personal thing. Just want to make the point that Lyme CAN do all those things to a person, and they can be resolved by proper treatment.

If the LLMD feels some of those things might not be caused by the infections, well.. I'd question how they came to that conclusion. Again, knowing what all Lyme/co can do to someone's mind, how can you rule anything out when the pt hasn't received.. again, adequate treatment?
Do the work, be the prize.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 2/27/2018 3:28 PM (GMT -6)   
Bartonella is a coinfection that often accompanies Lyme and can cause severe psychological symptoms. I'm so sorry to hear about the substance abuse. That is just more poison and toxins he is putting in his body and will surely hinder any efforts of treatment.

You may want to look for another LLMD who is experienced in working with coinfections and those with psychological issues, including substance abuse. He may need more than one Lyme literate health provider.

You can start a new post "Looking for LLMD near (your city or state)". Girlie is our moderator. You can email her and ask what LLMD's she knows of near you or any providers who may be a better fit for your son.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 2/27/2018 3:51 PM (GMT -6)   
Is there a family history of these mental health issues? Lyme and/or Bartonella can cause all of those.

“The two most common problems are encephalopathy and mental status alterations, in other words, headaches of varying severity and mental clarity problems. The full spectrum of neurological problems can be severe, including seizures (grand mal or otherwise), status epilepticus, epilepsia partialis continua, cerebral arteritis, acute mastoiditis, meningoencephalitis, peripheral facial nerve paralysis and/or palsy, coma, aseptic meningitis, hydrocephalus, ptosis, demyelination, transverse myelitis, neuralgia, dysesthesia, radiculitis, Guillain-Barré syndrome, paraparesis, paresthesia, ataxia, tremors, aphasia, torticollis, epidural abscess, acute hemiplegia, distal axonal sensomotor polyneuropathy, dementia, acute-onset personality changes, agitation, panic attacks, subcortical fronto-parietal lesions, motor impairment, neurologic amyotrophy (muscle wasting), severe headache, depression, psychosis. Hallucinations, sensory neuropathy (diminished tactile sensation), and transient paresis. Peripheral visual defects accompanied by depression, anxiety, mood swings, severe headaches, muscle spasms, and interphalangeal joint stiffness are a not uncommon constellation of symptoms. Examination of brain tissue commonly shows lesions in the white matter of the brain, basal ganglia, thalamus, and gray matter. Perivascular lymphocytic infiltrates and microglial nodules are common in such instances. It is not uncommon for the sensory and neurological systems to become exceptionally sensitive to any kind of external input. The cerebral spinal fluid, when tested, is usually normal.

“The most common neurological problems are similar to a number of Lyme symptoms such as headache from meningitis, brain fog, depression, and difficulty with problem solving and remembering. However there is often a lack of emotional control and episodes of unexplained rage in up to 40 percent of those that experience neurological involvement during bartonella infection. Misdiagnosis as multiple sclerosis (or similar conditions), schizophrenia, bipolar disorder, or the flu is common as is improper prescribing in response.”

-Stephen Harrod Buhner. “Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma”

Venetia
New Member


Date Joined Feb 2018
Total Posts : 5
   Posted 2/27/2018 5:01 PM (GMT -6)   
NotQuiteAntonio - thank you for sharing your experience and I'm sorry for all the suffering you have been through. It is validating to hear that his psych symptoms may be related to his lyme dx. He is currently on doxy, zithromax and nystatin. I do believe they have made small differences, but I may just be wanting to see that. It is so hard to tell right now.

WalkingbyFaith - thanks for your reply. His substance use is very infrequent. He just has a strong desire to self medicate and will do whatever he can to make himself feel better. He is almost never in a position to use, but sometimes he gets away. Hence why he is again inpatient. I have started looking for another provider, I just wasn't sure if I may be on the wrong path with thinking lyme and co infections may be the cause.

acarined - thanks for that information. I've been reading all I can about this and I thought it could cause his psych issues, so I was completely taken aback that the doc would say that. There is some mental health issues in our family, but nothing even close to what my son is going through. Even his psychiatrist says he is atypical and has no firm dx for him. Which is why I feel so strongly, after almost a year of treatment, that this isn't really just a mental health issue at all.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2116
   Posted 2/27/2018 6:15 PM (GMT -6)   
Hi and welcome to our forum,

Just want to say hang in there. Treatment for these infections can take some time, especially if Lyme and the co infections have been diagnosed and untreated for a long time.

Detoxing is very important when treating, when the treatment kills the bacteria it causes toxins in our bodies/brain and can increase symptoms.

We also encourage you to take a look at our "New to Lyme"start here thread at the top of the page.

It has very important and useful information on Detoxing, symptoms, Lyme and more.

Always feel free to ask questions and reach out for support, you and your family are not alone and our members are very helpful and caring.

Take care Jo

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 2/27/2018 6:37 PM (GMT -6)   
Hi
I'm so sorry to year your son is going through this.

My son's main sx for about 2 years has been anxiety/ocd. At his worst, he couldn't walk, read, had migraines every day for 6 months, extreme fatigue. His insomnia, hallucinations, anxiety and ocd have been crippling and have almost torn us apart.

His bathing routine would take two hours/day, it would take hours to go to sleep, and he would be shaking with anxiety and have horrible nightmares when he did sleep.

But!!! All of these symptoms have gradually fallen away, his he still gas anxiety/ocd, but it is about 20% of what it was. His remaining sx his LLND think may be PANDAS triggered by Bartonella not strep. So please consider this confection. He is currently taking japanese knotweed, gou teng, cats claw, houttuynia, Sida Acuta and ginseng. He recently took Bactrim for pathogenic bacteria in his stool (sorry tmi) but it was good to see if he herxed from it (he didn't)

What is your DS taking right now?

Please give him a big hug from all of us (my son gave me a hug yesterday-first one in two years-(used to be a super hugger-) because of his ocd/germaphobia) let him know this us going to get better and he will have a wonderful life again.

And as I have been reminded here so often -never never never give up!
15 yr old son sick no school Oct/15 Dx July/16
Migraines extreme brain fog anxiety/ocd insomnia extreme joint pain neuropathy stomach pain
Aug 3/16 Doxy Zithro BB Bab 2
Oct 5 Zithro and rifampin, Bab 2 anxiety/panic attacks -quit rif
Dec Zithro, Artesunate and finishing Bab 2 Mid Dec add japanese knotweed,gou teng
Feb 2017 80% normal back to school, added houttuynia

frikfrak
Regular Member


Date Joined Feb 2013
Total Posts : 47
   Posted 2/27/2018 6:38 PM (GMT -6)   
Hi,

If you want to can email me and I can tell you alittle about my son, 27....also only mentally affected by lyme.

frifrak

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 2/27/2018 6:45 PM (GMT -6)   
Oh sorry,

Where do you live? Anywhere near the pediatric llmd Dr. J?
I hear he is an angel! I bet if you told his front desk that your DS was hospitalized right now he may try to squeeze you in?

Post Edited (Lymiemomster) : 2/27/2018 7:25:23 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32635
   Posted 2/27/2018 8:18 PM (GMT -6)   
Venetia said...
Hi Everyone, new here looking for suggestions for my DS15. He has recently be dxd by an llmd with Lyme, was neg on the CDC test, but has several known tick bites. He also had high myco levels. Problem is most of his symptoms are psych issues and he is currently inpatient for the 6th time in a year. His llmd has been treating him with abx for two months now, but I just found out yesterday from the inpatient doc that the llmd doesn't think his psychosis is related to Lyme. So now the theory is that he has some unknown psychiatric disorder and lyme.

This past year we were treating just for psych symptoms. He has been dxd with ADHD, anxiety, depression, psychosis and bipolar. He has intrusive thoughts, daily headaches, neck and back pain, some tremors, loss of interest in everything, trouble sleeping and is unable to focus. He hasn't been in school in a year now. Treatment has never been effective and no one really knows what is going on. When we stumbled on lyme I thought we were on the right path. I am so devastated that this doc doesn't think this is all related. And just because all that isn't enough, he has substance abuse issues.

I often feel like giving up, but how can I just leave him to a lifetime of mental health issues and hospitalizations? He often talks of overdosing and believes that he will die from that. I left the meeting yesterday with him holding back tears and mad at me for being in the hospital. I just need something to go right for him, but I can't seem to get him the help he needs. Anyone have thoughts or suggestions?


You might want to consider getting a second opinion from another LLMD. There is one that is a Pediatric LLMD in Connecticut - not sure if he's taking any new patients.
There's also a Pediatric LLMD in the Jemsek Clinic now.

I'm concerned that his LLMD doesn't think his psychosis is from lyme. What????

Please email me if you want the contact info for the two LLMD's I mentioned.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Venetia
New Member


Date Joined Feb 2018
Total Posts : 5
   Posted 2/28/2018 1:31 PM (GMT -6)   
Girlie and frikfrak, I sent you both emails. Thank you.

Lymiemomster, would you be able to email me the full name of Dr. J? I could use an angel right about now smile I'm so happy to hear that your son was able to hug you again. There was a time when we couldn't touch my son because he wasn't sure if we were real or impostors.

My son is currently on doxy, zithromax and nystatin. They have taken him off all his psych meds and are going to do neuropsych testing to try and get a baseline for him. I'm kinda glad they did that. He is not showing much change since being off his meds, so I am guessing that the abx are helping a little. Trying to be positive.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32635
   Posted 2/28/2018 1:57 PM (GMT -6)   
Venetia - I just emailed you the contact information for Dr.J and also for the Pediatric Dr. J.

(As you see, I found your thread finally.)


If he is an inpatient...will you be able to take him out to see a LLMD?

I hope he stays the same off the psyche meds.....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 3/1/2018 12:28 AM (GMT -6)   
So the first couple of months on antibiotics were pretty tough for us. Are you able to incorporate some detoxing into his care? I guess it might be hard if he is in hospital. Is he taking probiotics?

Have you heard of Stephen Buhner the herbalist? Maybe you could look for his lyme and Bartonella books at the library? Those books might be helpful to explain what is going on for your son.

I think japanese knotweed (trans reservatrol) and gou teng were very good for my son to decrease the cytokine cascade and brain "inflammation".

Try to stay the course and stay positive smile. Can you keep a symptom checklist? Start from head to toe, with symptoms and severity -like -ice pick head ache left temporal, 7/10 , 2 hours
I think this makes it easier for you to explain symptoms to your doctor and is very encouraging to watch them decrease.

Take care!,
15 yr old son sick no school Oct/15 Dx July/16
Migraines extreme brain fog anxiety/ocd insomnia extreme joint pain neuropathy stomach pain
Aug 3/16 Doxy Zithro BB Bab 2
Oct 5 Zithro and rifampin, Bab 2 anxiety/panic attacks -quit rif
Dec Zithro, Artesunate and finishing Bab 2 Mid Dec add japanese knotweed,gou teng
Feb 2017 80% normal back to school, added houttuynia

Venetia
New Member


Date Joined Feb 2018
Total Posts : 5
   Posted 3/1/2018 10:32 AM (GMT -6)   
Lymiemomster said...
So the first couple of months on antibiotics were pretty tough for us. Are you able to incorporate some detoxing into his care? I guess it might be hard if he is in hospital. Is he taking probiotics?

Have you heard of Stephen Buhner the herbalist? Maybe you could look for his lyme and Bartonella books at the library? Those books might be helpful to explain what is going on for your son.

I think japanese knotweed (trans reservatrol) and gou teng were very good for my son to decrease the cytokine cascade and brain "inflammation".

Try to stay the course and stay positive smile. Can you keep a symptom checklist? Start from head to toe, with symptoms and severity -like -ice pick head ache left temporal, 7/10 , 2 hours
I think this makes it easier for you to explain symptoms to your doctor and is very encouraging to watch them decrease.

Take care!,


He is currently not doing any detoxing or probiotics. We were doing those at home, but yes it is hard while he is in the hospital. I had to fight with them to keep him on the abx, but now they OK with them. So I can try to get the probiotics going again.

As for keeping track of his symptoms, that would be almost impossible since I only see him or talk to him once a day and he doesn't like to share what is going on at the moment. It is really hard to not be around him all the time, keeping an eye out for what is happening with him. He fainted a couple of nights ago for the first time ever and I have no idea why. His BP was low, but he slept well and was fine yesterday so who knows at this point.

We will have another team meeting next week with the hospital and his outpatient team so between us we should be able to gauge his progress a little. But since most of his team think this is more of a mental thing, it is hard for me to convince them otherwise. Especially with the llmd saying he didn't think Lyme was connected to psychosis. Not at all helpful. Thanks for your suggestions.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, June 23, 2018 6:28 AM (GMT -6)
There are a total of 2,974,458 posts in 326,177 threads.
View Active Threads


Who's Online
This forum has 161278 registered members. Please welcome our newest member, centerfield.
336 Guest(s), 7 Registered Member(s) are currently online.  Details
Dahlias, sandyfeet, RobertC, Sherrine, RobLee, straydog, duke68