posted
Can anyone talk about managing psychiatric diagnoses concurrent with Lyme/Bart etc? Did you have the psych symptoms before Lyme? Do you still need psych meds after abx / other Lyme tx?
I first got sick almost 3 years ago with plenty of systemic / physical symptoms. But the most insidious and devastating symptoms by far have been neuropsychiatric / bipolar-like mood swings which were new.
After a couple years of some positive diagnostics, excellent LLMD treatment, and the financial devastation and alienation by loved ones that accompanies all that...
I am kind of losing faith in the 'treat the cause' / LLMD approach. Antimicrobials / supplements and time alone got me to a good place, but I can't afford it and after initial improvement, it didn't seem to keep me mentally stable enough.
It is a new and frightening sensation to consider that a funeral, car wreck, work stress etc - things that I used to take in stride like a champ pre-tick bite - might send me into
I am about to go the mainstream route, accept diagnosis/treatment for bipolar. I'm scared. And I have an irrational hangup that accepting a mainstream approach negates my insistence that I have an infectious disease which caused all this disruption in my life and bizarre behavior.
I also sometimes go down the rabbit hole of reevaluating my whole life to question whether I had a preexisting mood disorder which was activated by infection. No fun, and hate that I'm basically stigmatizing what might be my diagnosis.
Anywho. Would love to hear if anyone else has been through similar stuff..
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
When the brain suffers an insult it makes sense that certain neurotransmitters will be imbalanced. The problem I have with psychotropics is that I'm not sure we know enough about neurotransmitters to start messing with them.
On the other hand I'm not sure why you have to accept any diagnosis to try out a couple meds.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
well I can tell you I have huge gut-flora issues and I suffer all kinds of pschy stuff.
If I go on a binge and eat lots of carbs for a day I am tortured with my brain racing and out of control,severe nightmares,anxiety.
Your gut has so many neuro transmitters,something to consider and maybe will help.
The brain stuff is the worst,breath,ride it out.
I absolutely know how tough it is,your not alone.
If you are not on an ssri antidepressant look into 5htp and l theanine to at least take the edge off.
Stay away from all artificial sweeteners except stevia, they cause my mind to race and have nightmares.
Posts: 227 | From fairhaven ma | Registered: May 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you gluten free, totally, even with lip balms or gum, cough drops, etc.?
Gluten can cause all kinds of psychiatric symptoms, really.
And if you think you are gluten free, be sure to check on that as even many foods labeled gluten free are not - they are processed on equipment or in places where wheat my fly, so to speak.
Some with deli food / restaurants.
And many of the procedures used for diagnosis are just wrong - they can miss it. A genetic blood test is a good idea - but also a physical test by totally - absolutely - being gluten free for a couple months to see if there are improvements. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity
Psychiatr Q. Author manuscript; PMC 2013 May 2.
Excerpt:
Conclusions
Converging and accumulating evidence suggests that the gluten-mediated immune response is frequently associated with neurological and psychiatric manifestations,
and GS represents a unique condition with a potentially different mechanism and different manifestations than celiac disease.
More research is needed to help disentangle CD from GS and to understand the mechanisms of gluten-associated neurologic and psychiatric complications.
These central nervous system effects of GS and CD are not trivial.
Therefore, given the under-diagnosis and potential health consequences, this suggests the value of developing better ways of detecting and preventing the potential complications of these disorders. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Porphyria should also be considered. Porphyria can most certainly create all kinds of neurological issues that affect the brain / mind / how one feels in their body.
LIVER SUPPORT is vital to any lyme / TBD treatment protocol and more so for anyone who might have any of the kinds of porphyria.
what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . .
Do you have gas heat / utilities? Use any chemicals? Even air fresheners can cause psych issues.
And - the light bulbs you use could, too. Best to avoid all fluorescents. LED should be okay but not if on a dimmer switch.
Also considers any reactions to any mood or sleep meds, any kinds of steroids (even inhalers) . . . .
Cytomel, a T3 thyroid Rx nearly derailed my life with major psych symptoms that got me MISdiagnoed with bipolar. It was the Cyotmel all along that cause the sudden drops I was having.
And, many Rx contain gluten. At that time, I did not know that I was celiac. That discovery came years later.
There are so many other things to consider.
If you might have access to a good naturopathic doctor, they could assess for some of the nutritional matters. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might want to read up on Lithium Orotate
(this is NOT the same form of lithium so often used for those with "bipolar" diagnosis - and most certainly not at high dose. IMO, this is far better as a first consideration if one is going to try any form of lithium -- and first see if you might be deficient).
posted
You could look into Lamotrigine. It is an antiseizure med that also levels out the brain therefore helping bipolar.
I am on it because my dr. said it is like a "brain detox." I think he means that is levels things out.
I think he gave it to me because my nervous system is so sensitive and thinks my brain is overexcited. Sure feels that way... Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What you say about certain stressful events being possible to send you into trouble, sounds like adrenal dysfunction. Be sure to see Wilson's book here.
posted
Thanks for all the input. I have tried most of the supportive therapies mentioned above, and I'm sure my old house has air quality issues that don't help...
I've been functionally stable (if a little depressed) overall except two periods of a couple manic-ish months that seemed to be triggered by stress. I was under LLMD care during the second episode, which actually started with a seizure-like episode which caused me to total my car. I had also recently stopped Ivermectin at that point.
I cannot afford to experience another of these disruptive episodes, and I don't think that going through naturopathic remedies by trial and error is going to give me peace of mind.
So I'm most interested in people's experience with mainstream psych meds / symptoms after lyme tx.
I started Wellbutrin a week ago, and the improvement in task orientedness and energy was very impressive. However, if I am bipolar, it seems taking an antidepressant wthout a mood stabilizer is a recipe for disaster. So I'm being really vigilant monitoring for signs of mania.
Foxy lady: I am going to ask to start Lamotrigine. I am a little worried about what happens if I ever want to wean off. Have you gone through that?
Keeb: I've been on lithium orotate before and restarted it a couple weeks ago. I do think it helps.
posted
I think most of us have psych symptoms that need to be managed -- and a lot of the meds we take can alter mood, too. (I had a horrible experience with Topamax, which I tried for migraines -- it gave me symptoms that mimicked bipolar disorder.)
I couldn't tolerate Wellbutrin at all, but did find lasting relief with Cymbalta, which I will probably take for life unless it stops working.
It evens me out, and makes me feel emotionally stable without feeling numb. I had a history of depression even before getting so physically sick, so I have no idea how much of the mood stuff is Lyme related, and how much is genetic and life events.
I think the most important thing is to find something that manages your symptoms. You're right that taking and antidepressant without a mood stabilizer could be a recipe for disaster if you are truly bipolar.
Everyone responds to these meds differently, though.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Hi ScickSci, I am going through a similar situation. Please feel free to PM me if you would more details.
Here is my story in short. I was also diagnosed with "bipolar" I knew I really wasn't and there was something else wrong with me, medically causing these weird behaviors.
Everyone was telling me I need to accept my "bipolar diagnoses". Especially My mom is also " Bipolar" but I believe she also has Lyme or some other medical situation.She has arthritis, glaucoma, bladder issues etc besides " bipolar. I don't want to sound crazy by saying it to her family. Plus no one else in her family has Bipolar.
I went on Psyc meds because I was out of control. The meds never fully worked. It took a very very long time till i got stable. A few months later I got physical pains etc. got diagnosed with Lyme.
I personally believe that if you are not treating the Lyme it will be much harder for Psyc meds to work on you. I didn't get fully stable till I got treated for Lyme.
I am still battling Lyme so sometimes I get bad psyc herx but overal I feel the treatments for Lyme are helping my Psyc meds works.
Posts: 71 | From NYC | Registered: Oct 2015
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Ultimately, I think embracing bipolar medications is the way to go. I'm kind of accepting that I will never be able to fully eradicate these infections, and the healthcare system just isn't set up to treat them yet.
I'm really just doing Ivermectin weekly, fish oil, magnesium, B-vit to manage background co-infections, and keeping a low stress / clean living lifestyle (I've become exquisitely boring!). I physically feel ok aside from mild arthritis which worsens with ivermectin; I felt way worse physically on abx.
There were many factors at play I wont go into, but I felt such a stark increase in energy on Wellbutrin that I do wonder how much my functionality could have been improved / previous recovery time shortened if I had embraced psych help while seeing the LLMD.
I have even gone so far as to wonder if my physical symptoms were all psychosomatic this whole time and simply mental illness. But then I resist it, think of lab abnormalities, positive diagnostics, symptoms like fever, partial seizures and cardiac arrythmias and try to be easier on myself. I want to know and believe that I didn't 'cause' this struggle out of thin air.
But if enough people tell you you're crazy, it's hard not to listen at some point, right? Even if both sides have validity: "You are mentally ill." "No, I have infections which are causing neuropsychiatric symptoms."
Just beating myself up, trying to take responsibility for my actions when in 'bart rages' or 'manic' states. Trying to forgive myself by saying, 'that wasn't you, that was the disease.' being sad that loved ones consider blaming the disease an excuse. Regretting so many lost opportunities and relationships as my life has been turned upside down these past 3 years.
posted
I agree with you that our healthcare system is not set up to help people with Psychiatric issues from Lyme. I also go back and forth. At the end of the day, You have to remember its the Lyme!!! look how there is a ton of research being done now.
I hope you will beat the Lyme soon. Either way while you do that you should treat the "bipolar" it could be you have both diseases.
Posts: 71 | From NYC | Registered: Oct 2015
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I have a cousin who was raised as mentally stable as is possible, who suddenly became "bipolar" in her later twenties.
At the time she didn't realize she had lyme and treated her mental symptoms. It helped her quite a bit.
Then the Lyme symptoms came out and once she treated lyme her bipolar symptoms went away and she was able to wean herself off meds.
I don't think there is any harm in seeing if you can balance your brain, and from the sound of things you have a good case of head/brain inflammation.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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