posted
I'm diagnosed with Bartonella and Lyme and reoccuring mono. Does anyone else out there have trouble with obsessive, unwanted thoughts? I feel like I'm going crazy. Clearly, if I didn't care what I was thinking, this wouldn't be a problem. I wasn't this way until I got sick. I remember what it used to be like to be normal. I feel like I'm on the verge of Tourette's as well. I have to change words in order not to say horrible things.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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surprise
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posted
Are you currently in treatment/ on antibiotics?
The obsessive, unwanted thoughts, and compulsions, sound like a Pediatric disorder called PANDAS (strep induced) or PANS (lyme and co- infections induced)
basically it is the infections causing inflammation in the brain, causing rouge antibodies to attack the basal ganglia, creating a onset of specific symptoms, such as OCD, tics, etc.
Ibuprofen can help alliveate it slightly, but treating the infections is paramount. Azithromycin, Biaxin, have been helpful to my daughter with this condition specifically.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thanks. Yes, I'm on triple antibiotic therapy. I am taking Biaxin. Sometimes I smile too, at things I shouldn't, and it feels uncontrollable. If I were not sick I would think I was possessed. I did have multiple strep infections over the last three years. I just want the insanity to be over. Emotionally it is very difficult to be Christian, and try to keep this under control.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
I've been having recurrent ruminating thoughts lately. It definitely feels like it has to be a symptom of something. Like I have some kind of new chemical imbalance.
I realize that the scenario I keep replaying is apparently something I haven't fully processed and made peace with but it's bizarre that it's now randomly popping up mid lyme treatment. And that my mind is focusing on it so intently.
I had been supplementing with Methylcobalamin which is B12 and Methylfolate. My LLMD said my levels were low. B vitamins can make me really anxious.
I have a bottle of Jarrow brand B - complex in my medicine cabinet that I wrote "ANXIETY" across it with a black sharpie.
With my Lyme brain I'd go through phases where I'd think "Gee maybe it would be a good idea to take a B supplement" and then I'd again have to relearn that no it's not a good idea, they make me crazy.
The single B12 and Folate weren't so bad for a while but I think they built up in my system and at least added to my insomnia and were probably adding to these ruminating thoughts I've been having.
I've stopped taking them and am feeling a bit better. Still distracted but I think eliminating that supplement helped somewhat.
I switched over to a non-methylated version of B12. Adenysocobalamin. If anything it made me feel a little groggy at first which feels better than tweaked out.
Some people can't process methyl donors depending on their genetic mutations. I don't think I have the mutations that cause you to not process methyl donors but I obvisouly have something going on with B vitamins.
Anyway, I don't know if lyme or a co-infection is causing the problem, I certainly wouldn't doubt that they could, but it may be helpful to also look at other things you may be taking and see if they could potentially cause similar side effects.
Posts: 154 | From Boston | Registered: May 2014
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posted
I've also started wondering about the effects antibiotics have on our enteric nervous system. This is the system of neurons that govern our digestive system.
It's known as the "second brain". According to Wikipedia:
The enteric nervous system also makes use of more than 30 neurotransmitters, most of which are identical to the ones found in CNS, such as acetylcholine, dopamine, and serotonin.
More than 90% of the body's serotonin lies in the gut, as well as about 50% of the body's dopamine, which is currently being studied to further our understanding of its utility in the brain.
We are killing of the microbiome that exists in our gut. If you look at the wikipedia page for microbiome it talks about how disrupting the balance of bacteria in our digestive system can cause cognitive problems like anxiety and depression.
I was surprised to see this sentence in the microbiome wikipedia page. "The pathogenic bacteria Borrelia burgdorferi causes Lyme disease which causes depression in up to 2/3 of all cases."
I remember reading the book about The Specific Carbohydrate Diet by Elaine Gottschall and she mentioned that children with extreme cases of systemic candida would exhibit tourettes like behavior that her diet would cure.
If you're on antibiotics it seems important to take a lot of probiotics. And I think being mindful of your diet, making sure you're not eating foods that could potentially feed yeast like sugar and heavy carbs is helpful.
Posts: 154 | From Boston | Registered: May 2014
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posted
Since google is my guru/therapist I also came across the concept of Avoidance Coping Style. I was looking up ruminating thoughts and saw that it was listed as a possible negative response to a stressful situation. A coping style that can be more common in situations that a person isn't capable of changing like illness.
This is taken directly from wikipedias avoidance coping page.
Literature on coping often distinguishes coping avenues into two broad categories: approach/active coping and avoidance/passive coping.[11][12] Approach coping includes behaviors that attempt to reduce stress by alleviating the problem directly, and avoidance coping includes behaviors that reduce stress by distancing oneself from the problem.[13]
Traditionally, approach coping has been seen as the healthiest and most beneficial way to reduce stress, while avoidance coping has been associated with negative personality traits, potentially harmful activities, and generally poorer outcomes.[14]
However, research has shown that some types of avoidance coping have beneficial outcomes.[15][16] A study by Long and Haney found that both jogging and relaxation techniques were equally successful at lessening anxiety and increasing feelings of self-efficacy.[17] Therefore, it seems that positive forms of passive coping such as exercise and meditation have qualitatively different outcomes from negative forms such as binge eating and drug use.[18]
These positive forms of passive coping may be particularly beneficial for alleviating stress when the individual does not currently have the resources to eliminate the problem directly, indicating the advantage of flexibility when engaging in coping behaviors.
Ruminating would be a negative form of avoidance coping. You're coping with the stress of being ill by distracting yourself and focusing on other stressors.
I still think there's more to it than this is just what I'm choosing to do to deal with my problems but I have decided to try to incorporate more healthy coping methods to see if it has any impact on the ruminating thoughts thing.
I haven't started that yet but, it's a goal! I was thinking I'd just start up my morning walks again. It's exercise that I enjoy and it might help.
Posts: 154 | From Boston | Registered: May 2014
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posted
SacredHeart, I know exactly what you're talking about! My head does very similar things to me. I'm 20, and also a Christian, so I completely understand the pressure that can come from feeling guilty for one's thoughts. Praise God that Jesus understands our Lyme-weakened minds... and that His love and sacrifice is great enough to cover even the most troubling ones. He knows ahead of time how bad it's going to get, and He loves us anyway... and He'll be right there with you every step of the way.
I've discovered that apple cider vinegar really helps clear the poisons in my brain. I take 2 tablespoons in water between each meal, and if I've missed it, I definitely can feel it. If it's an especially bad day, I take a little more or take it more often. I'm also taking Pinella for the same purpose. I've also found that essential oils (I use Young Living's "Joy" "Stress Away" "Peace and Calm" "Valor" and "Release")can help in big ways.
Have you heard any music by Jason Gray? When things get really bad, I'll put one of his CDs in. His music is amazingly uplifting, and usually a few songs in I find my attitude changing, and my mind clearing even when I don't WANT it to. He's the one artist I've found who can do that to me. You could look for "A Way to See in the Dark", "The Other Side" "Love will have the final word" "Love's not done with you" and "Begin Again" on youtube.
I hope you find something that works for you soon! I understand the frustration that can come when things work for others but not for me... so just experiment until you find something... you WILL find it. You're not alone, and you're not crazy. There are others of us out here fighting this battle too.
Posts: 21 | From USA | Registered: Aug 2014
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Taking methylated B vitamins without knowing your methylation profile (all the SNP's, not just MTHFR) can lead to unexpected results.
Also, taking too much methylated B vitamins too quickly can unleash a huge batch of stored toxins, which can wreak havoc on the body (and/or brain).
Taking expired B Vitamins can make a person ill, because the shelf life of B Vitamins is short...relative to other nutrients like magnesium or calcium.
Taking methylated B Vitamins without sufficient amounts of the underlying supportive minerals (such as Magnesium, Molybdenum, Zinc, etc.) can also lead to problems.
posted
So sorry you are going through this. You are not gong crazy, but the nasty bacteria causing all of this do cross the blood/brain barrier and wreak havoc wherever they go!
Read www.thehumansideoflyme.net written by a now-retired LL psychiatrist. It'll put things in perspective for you.
Listen to K-LOVE (there's a station on 88.7 FM in Tyler, TX) for life-changing, uplifting music. You can also listen online at www.klove.com
quote:Originally posted by Samlyme: I've also started wondering about the effects antibiotics have on our enteric nervous system. This is the system of neurons that govern our digestive system.
It's known as the "second brain". According to Wikipedia:
The enteric nervous system also makes use of more than 30 neurotransmitters, most of which are identical to the ones found in CNS, such as acetylcholine, dopamine, and serotonin.
More than 90% of the body's serotonin lies in the gut, as well as about 50% of the body's dopamine, which is currently being studied to further our understanding of its utility in the brain.
We are killing of the microbiome that exists in our gut. If you look at the wikipedia page for microbiome it talks about how disrupting the balance of bacteria in our digestive system can cause cognitive problems like anxiety and depression.
I was surprised to see this sentence in the microbiome wikipedia page. "The pathogenic bacteria Borrelia burgdorferi causes Lyme disease which causes depression in up to 2/3 of all cases."
I remember reading the book about The Specific Carbohydrate Diet by Elaine Gottschall and she mentioned that children with extreme cases of systemic candida would exhibit tourettes like behavior that her diet would cure.
If you're on antibiotics it seems important to take a lot of probiotics. And I think being mindful of your diet, making sure you're not eating foods that could potentially feed yeast like sugar and heavy carbs is helpful.
-
VERY VERY TRUE and very very important!!!!
Also, be sure to take lots of magnesium every single day!
-- and stay away from gluten!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
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posted
SacredHeart, I find it very interesting you've had 'multiple strep infections over the last 3 years.'
This is very unusual for an adult. Have you ever had your strep titers checked?
STREP TITER TESTS: An ASO-titer and D-nase B titer. Ask the doctor/laboratory to give you a numeric result – not just positive or negative. Anything above the labs normal range should be quantified with a specific numerical value.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thank you for all of the comments and support. I will be looking into all of the suggestions.
As far as strep goes, I went to the infectious disease doctor before a lld. My strep b was off the charts. She didnt seem concerned. At the time I was convinced I had a rouge strep infection. I even had my blood tested out of pocket.
I used to be a teacher before my body fell apart, so the repetitive strep infections did not shock me at the time. I told my lld, but he didnt seem overly concerned. I come up positive on rapid tests, but nothing ever cultures out.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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surprise
Frequent Contributor (1K+ posts)
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posted
Wow. Strep titers off the charts, repeated strep infections, coming up positive on your throat swabs (why send it in for a culture when it's positive?!)
Sudden onset OCD, tics, Tourette like symptoms, compulsions-
You have strep creating rouge antibodies/ running rampant, crossing blood brain barrier, hitting basal ganglia part of your brain, causing these symptoms.
You know how 'strep gone wild' in the body causes rheumatic fever, attacking the heart, etc. and folks with rheumatic fever MUST be put on specific antibiotics to get the strep down,
That's what you need to do. You said you were on Biaxin. Not sure what else you're on, and obviously I am not a Dr., but believe me when I tell you please get to either your LLMD,
or another Dr. (your infectious disease Dr. is an idiot) and tell them you need to get the strep eradicated. Keep pulling the strep titers to make sure they are going down.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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It is so hard to experience changes of your mind and general disposition. I can relate. I was so laid back before this disease now I am like a nervous wreck all the time. Just started having constant anxiety and panic attacks which is new for me. I have also had several episodes of Lyme Rage.
I also had unwanted images, but mine came as I tried to sleep and they would flash through my mind. Very disturbing and unrelenting. To me they seemed "evil". My sleep therapist at the time convinced me to stick with the term "disturbing" so doctors would not dismiss me. It was scary. That was prior to diagnoses. I had no idea what was wrong with me then.
They have improved for me since starting antibiotic treatment. Other things have worsened but that one has improved. I've been in treatment for around 6 months.
I hope it improves for you too!
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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posted
I tried to get a second opinion from Baylor in Dallas, but they said they didn't need to see me. I came up positive for lyme on one of those specific antibodies that can't be anything other than lyme. I guess I'll talk to my lld about it next month. I wish another doctor would listen, but I guess it isn't Gods Will. I'm pretty sure this is going to kill me.
I'm certainly not glad you are having nightmares mama, but it does help me feel less crazy.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
Try not to feel crazy! I have had the same thoughts yet somehow I keep going. All you can do is keep the faith you will get better. I try the same thing everyday. You are not alone! It's a horrible disease. I am in the Dallas area too...
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hello!
Don't be discouraged!
Lyme, babesia, bartonella, strep... All these bugs play havoc on the chemical receptors in our brains!
I would suggest enquiring about bartonella.
For me, and suggested by my LL, bartonella causes OCD and impulsive behaviour.
Bartonella infection has caused me to do reckless and dangerous things, to have sadistic and crude thoughts. For my brain to say innapropriate things, I can barely find the right word in time.
The other day I kept wanting to say, "contacts", but my mouth said, "condoms".
At the time I was discussing the cost of contacts and buying them from Costco...
You can imagine the face of my family members during that dinner conversation.
Haha.
Also violent dreams.
During treatment of bartonella all of these things went away.
Keep on trucking, keep treating and keep laughing.
Finding the humour in these awful side effects is a gift from god, I think.
So please feel free to chuckle at my contacts/condoms slip up. I hope it brings you a smile.
It brought a big grin to my 85 year old grandma.
(we have to laugh at these things to keep afloat)
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thank you for this threat...so sorry your suffering though. I'm right there with you and it helps to read this thread.
Posts: 908 | From Albany | Registered: Nov 2008
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It was when I gave it to God that I started to heal from these awful thoughts.
God will be by your side the whole way.
When you get health back you will be a different better person.
Treatment is the tool God has given you,keep at it.
Posts: 342 | From northern california | Registered: Dec 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
What helps me when I have crazy thoughts is to keep repeating a loving mantra or prayer over and over until the thought leaves. The brain can't process two thoughts at the same time. Hope this helps someone as it has helped me many times.
Healing to all.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
SacredHeart- Just a thought. Are you on any mood stabalizing/ pain or anxiety medications for symptoms?
I have noticed changes in my thoughts and moods as I have tried different medications. In fact I took Ativan this morning for my overactive nervous system kicking in and layed back in bed. Not asleep just relaxing and I had some of those really unwanted thoughts and images popping up in my head, so I immediately got up....
Made me think of you and if you are on any meds that could contribute...
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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posted
Again, thanks for all of the ideas, and kind words. I'll try to respond as I can. I spend most of my time taking care of my two month old.
Regarding Ativan, one doctor gave it to me when this first started. He just thought I was crazy. The Ativan made it worse. I said horrible things, through myself on the floor, screaming and crying in fear. Ativan is the devil.
Lol This from the guy a year prior was getting punched in the throat bare knuckle boxing, and going back for more.
The anxiety has been horrible the whole time. I'm weening myself off Triplotol and gabapentin right now. We just can't afford it. I have a suspicion that the Triplotol has made things worse. Though I did enjoy feeling slightly drunk when upping the dose. It was a temporary 20 minute vacation from my body.
Ativan was pretty awesome too, for a while.. Week two turned into h e double hockey sticks. How long have you been on it?
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
I understand. I started my downhill slide after the birth of my second child. I have two little ones 4 and 2. It is challenging to say the least. I hope you have some support nearby. I moved across the country so we could be by my mother, who I need every day!
I have only taken Ativan at a 1/4 dose a few just recently. They gave me miranol and basically had a panic attack with paranoia. Ive tried neurontin but it either doesn't help or makes me worse I cant tell. I had myalgia from Zonegran and Lamictal caused stinging parasthesias all over that I wanst having before taking it. I just took it 3 days ago and I'm praying they go away...So no real luck with meds here.
I do take Mobic which is an anti-inflamatory and sometimes it helps with my nervous system a bit.
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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posted
They want me to increase Ativan to 3 x a day.. I'm reluctant. What happened after you took it for a couple of weeks?
Also had me stop B6 which was in several of my supplements.
Also since you are postpartum I wonder about your hormones? Mine were really low due to Lyme and maybe birth. I am on Progesterone and a compounded Estrogen cream and DHEA all bio-identical hormones. I had to stop testosterone cream because it could have been contributing to anxiety.
I know it's another cost but maybe look into bio-identical hormone replacement.
All my physicians are in the Washington DC area since I moved from there and I fly back every few months...
Is your LLMD here?
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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LisaK
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Member # 41384
posted
yes! I had this for a while during treatment it was very hyped up (herx)
my husband also during his rickettsia treatment could not stop cursing!!!! and saying all kinds of weird things.
I had thoughts of ripping my skin off and killing our dog. that was during a few of my treatments. it all went away pretty much now.
if you can get through it you will be better for sure!!! hang in there and do whatever you can to keep yourself busy and forgettting if you can!
I prayed like crazy and even had to lock myself in my room a few times.
I felt possessed and insane.
I hope it get resolved fast for you.
about PANDAS- I thought that is what mine was, but with treatment for tick disease it went away.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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surprise
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posted
PANDAS is a certain set of symptoms (OCD- which can be obsessive thoughts) tics, emotional lability, regression, etc. caused by strep infection.
With her history of strep, and extremely high strep titers, I'd say get the strep down, and fortunately, antibiotics that kill strep (which can be in areas of the body other than throat),
will also often treat lyme and other infections. But I'd say get someone to take the strep seriously, and check/ repull strep titers. Rifampin can get stubborn strep. Amoxicillin is often useless for it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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LisaK
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posted
I forgot about strep. sorry, didn't get to tread above. I am having reading issues lately.
I treated for strep . that actually could have been when I had those herxes
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
You should be treating with antibabesia, blood thinners and mmaybe even Same. Also something for Bart and strep infection. Then move on to rotate antiparasitics with Colonics or enemas
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