Topic: Has anyone recovered from psychiatric Lyme?
CD57
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posted
I've been off abx 6 mos and I think am having a relapse. Has anyone here recovered from neuropsych Lyme?
Posts: 3528 | From US | Registered: Apr 2007
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posted
What do you mean? I had a lot of cognitive symptoms and am recovered.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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Member # 11749
posted
psychiatric Lyme....psychiatric symptoms not cognitive
Posts: 3528 | From US | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, if lyme related, lyme needs to be addressed. Nip a relapse in the bud. Other tick-borne infections may be involved, too, so be sure to cover all the bases.
Be sure nutrition is top-notch, too. Often B-vitamin or magnesium deficiency can cause psych issues.
=====================
Regarding psychological and psychiatric matters caused by neurotoxic infections:
Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
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Do you mean like hallucinating, hearing voices? Homicidal, suicidal thoughts?
Can you be more specific?
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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CD57
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posted
Suicidal depression and nonstop crying/rocking oneself.
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posted
I'm still going through treatment, but I'm finding that as I treat Bartonella, my psych symptoms are responding, too. Which isn't much fun because the die-off from psych symptoms is hellish to go through, but at least I know the meds are working.
What meds are you currently on, CD57? You could be dealing with psych die-off. I know that the symptoms you mentioned are ones I've dealt with, and they've been particularly awful lately, again due to die-off. Detox as much as you can, and TALK TO YOUR DOC!!! When it gets as bad as you're saying it is, it's time to reevaluate with the doc.
Posts: 15 | From NY | Registered: Jul 2009
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glm1111
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Sounds like a relapse. I would suggest you call your LLMD and get back into tx ASAP. Sounds like you need more tx. Also look into antiparasitics in conjunction with your abx tx.
I have recovered from severe neuro Lyme, but it took a long time with persistent tx both allopathic and alternative.
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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Keebler
Honored Contributor (25K+ posts)
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- Yes, call your LLMD tomorrow morning. And, yes, parasites or other TBD can be connected.
Today, I hope you have some good magnesium on hand. Fish oil, too and maybe some very dark chocolate, like an 82% or maybe a 72%. One or two ounces, with nuts can pull me out of very dark place.
Really, just one ounce of VERY DARK chocolate has saved my life more than once. The cocoa, itself. Magnesium, too. Nuts will also give your brain some key nutrients right now. Brazil nuts, macadamias, walnuts are the best.
I would take magnesium in divided doses, up to 1,000 mg a day.
Regular cat's claw tincture can bring mood improvement in minutes.
If you have some Gotu Kola, that would also be helpful. Allicin, too, can improve mood for various reasons.
Are your B-vitamins up to speed? Low B's can cause deep depression.
The Importance of Magnesium to Human Nutrition -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CD57
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I'm not on meds....
Icarusalsoflew, what meds are you on?
Gael, I am glad to hear that you recovered from severe neuro Lyme. Did you use IV abx at all?
Posts: 3528 | From US | Registered: Apr 2007
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Keebler
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- I've been all over the web but can't quite find a simple explanation of this one Yoga pose that turned my mood around a couple of times. There are lots of articles, books and DVDs about Yoga for depression but not exactly what I wanted. So, I'll try to explain it.
Lie on your stomach, breathe calmly.
Rise up from your waist, to a level of comfort and look towards the sky, taking care not to bend your neck too much but pulling your shoulders back.
This should open up the chest and there are some key meridian points along the breast bone that will appreciate being stretched out. Hold for a breathing cycle, slowing lie back down.
Repeat a few times. Or just do what you can to stretch out your chest with breathing cycles.
There are some tender points along the breast bone that can benefit from gentle massage, too.
And, just to be sure, you've not gotten any new textiles, dry cleaning, vinyl products, etc. as those can cause depression, too.
Good luck. I hope you feel a shift with some letting go of what's got you in knots . . . moving that stagnant, binding, gripping energy out of your body. Sometimes, just moving through it, adding fresh breath can help.
I hope your LLMD will be there tomorrow to take your call. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CD57
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Thanks Keebler. My heart rate is at about 125BPM so this isn't going to work, but thanks.
Posts: 3528 | From US | Registered: Apr 2007
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glm1111
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I was on IV Rocephin for 6 mos after my head went completely numb along with my upper and lower torso.
The IV helped, but I don't think I would have made as much progress as I have without the antiparasitics.
Dr. K. treats all of his patients for parasites and worms. GiGi has posted a lot of info about this.
Keeblers suggestions as always are very good, especially the dark chocolate. Keep us posted. You will be okay once you get back into tx.
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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nefferdun
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Have you treated bart? It affects me emotionally and psychologically. When I hit it with abx I herx like a maniac and then feel a lot better.
Sam-e is supposed to help with depression. I take DL Methionine, a precursor to it, and it helps with pain and healing as well.
I hope you get back into treatment. As far as ever recovering, I have been in dark places like that and I am not there now so you can get out of it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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glm1111
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posted
P. S.
Just saw your elevated heart rate. That can be pretty indicative of active infection. Call your doc tommorrow. Sending you good healing thoughts.
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
I had rage, crying, and the cognitive symptoms can't be discounted because they were severe, ie, not being able to carry on a conversation and having no short term memory as in for 2 minutes even. I also had a lot of emotional stuff.
I used EFT for the trauma and it helped way more than I thought it would. It's free, so I thought I'd give it a try and I got great relief.
I got relief from the anxiety with KPU treatment.
The cognitive issues went away with bart and parasite treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Good nutrition is absolutely critical to healing the brain and producing the right neurotransmitters.
When hubby first got sick 10 years ago he had chronic gastritis and lost 30 pounds in a couple of months. He had 3 psych admits (suicidal 2 of those times). The psych meds just added more side effects.
He was not diagnosed or treated for lyme and coinfections for over 2 years. During that time we worked at healing his G.I. and treated for G.I. parasites -- he had giardia, ascaris and another parasite.
Took over a year to regain his weight. He had lots of nutritional deficiencies due to the gastritis. His moods gradually improved but the neuro symptoms -- mostly Parkinsonsian tremors actually continued getting worse.
Hubby was especially sensitive to glutamate -- could not take l-glutamine and many protein powder meal replacements caused reactions. He even got IV fats as his cholesterol had gone so low.
If we had known at the time that he had bartonella I feel like treatment for that could have speeded up healing of his G.I. issues a lot.
The SAM-e works great for hubby. He has been off all psych meds for 6 years or so while he has continued tickborne treatments. I don't count Ativan as a psych med -- that has been used more for seizure-like symptoms than for anxiety.
Try an epsom salts bath with baking soda to help with relaxation and detox.
And yes, it sounds like you may need to resume treatment.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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i have improved importantly from neuropsychiatric lyme. especially when i begin to treat bartonella , my depression, anxiety got better( after one month bartonella treatment) i keeping on lyme and bartonella treatment.I think bartonella was biggest factor on my psychiatric symptoms
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Hoosiers51
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Are you on psych meds? I saw you say you aren't on meds.
Psych meds are crucial, while treating, if needed....and also crucial after treatment if they are still needed.
How do you know these symptoms aren't just a separate psych disease? Maybe it's not from Lyme.
I am pretty sure that the depression I have is not related to Lyme/co's at all. (though I think my moodiness was, as I have talked about extensively. Though still not sure. If the moodiness gets bad again, I'll probably assume it's not Lyme/co's)
So many people in this country have depression without Lyme, so you need to consider that too, of course. There is no shame in it. Practically everyone I know in my "normal life" is being treated for depression.
If you are having suicidal thoughts and not being treated by a good psychiatrist, please see one ASAP! Good luck hon.....sorry to hear you a relapsing like this. Hang in there!!!!
Even if you weren't have suicidal thoughts, I still think you would def. need to see a good psychiatrist (given the other symptoms). If you are already seeing one, I'd get in soon and tell them about the relapse.
I can't believe I'm the only one recommending this so far.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Haley
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posted
This is one aspect of my illness that makes me think that I have made progress.
In the beginning I had extreme paranoia - the most terrible feeling in the world. I do not have that feeeling anymore. I notice as icarusalsoflew said above, that when I take Rifampin it seems to return a bit. I'm not willing to go back there yet but I think Rifampin will help my other brain problems.
icarusalsoflew -
I'm also curoius what you took that solved this problem.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
CD57 your mailbox is full. I have been using rifampicin for bartonella. i am taking it 600 mg empty stomach at the 06 am
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CD57
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posted
mailbox cleared!
well, guess what I started low dose thryoid support along with my adrenals and the depression has calmed considerably....not all the way but holy cow! how is it all these docs have missed it.....just because your tests may be "normal" they're not....mine were normal but I am clearly benefitting from supplementation.
Posts: 3528 | From US | Registered: Apr 2007
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posted
My story is: didn't have any psych symptoms. Been treated for lyme for years and years. Have improved, but is not cured.
Suspected the remaining symptoms were from the newly discovered retrovirus xmrv. Tried antivirals. Got a flare of symptoms, plus new ones. New symptoms were psych symptoms.
I personally believe that much of the psych symptoms come from the virus.
What I think people tend to underestimate is that the drugs we are taking (biaxin, doxycycline many more) have _immunomodulary effects_ plus some of them, such as those mentioned have anti viral effects.
I believe that we are underestimating those effects.
Please see the cytokine and chemokine immune profile in cfs: www.corienbennink.nl/cfids/cytokines.jpg cfs and lyme are almost identical twins. And much of practically everything overlap...
The sensitivity and specificity of that immune test is over 90%. They believe that these unbalances can cause symptoms, and it can make it harder to tackle other infections.
If I were you I would take that test. They do it at VipDx. It's called a cytokine and chemokine profile.
Now why would I say this? As I told you I got psych symptoms myself after beginning the (ineffective) antivirals. They were not the rights drugs for me. But they sure did stir things around.
It's just random that the psych symptom wasn't there before the symptom flare...
I recently did biaxin and the psych symptoms went away for two whole days.
And I have been poundering. Why should a antibiotic work only for two days. I think the answer is because of it's antiviral/immune modulatory effects. It works, then the virus upadjusted it's activity, and then it stopped working.
Finding the cause is step one. Knowing how to handle it is step two.
Good luck! And best wishes!
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Hoosiers51
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CD57,
So you are taking thyroid and adrenal prescriptions, or natural supplements?
Please let us know! I'm not on anything for hormones right now, but have been considering it, so I'd be interested to hear the brand and all that.
Thanks.
So glad to hear you are doing better.
Posts: 4590 | From Midwest | Registered: Jun 2008
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CD57
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I am puzzled by Peter's post. Peter, what are you going to do about your treatment? I'm not sure what you are suggesting to do other than to take anteretrovirals, which you say don't seem to be working. I'm not discounting what you are saying, but it would be interesting if you would share what you are planning to do about this new XMRV.
Hoosiers..I'm self medicating with Armour thyroid (all natural) until I get to a new doc next week. I have a lot of hypothyroid symptoms (except the weight gain) and I started doing research on www.stopthethyroidmadness.com which some angel pointed me to....bottom line, I am improving from low dose suplementation....now you also have to support your adrenals too, they go together. I use Standard Process Drenamin for that, but hopefully new doc will switch me to Cortef.
When our bodies are stressed/ill the adrenals make 20-40mg cortisol....so supplementation is key.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Ohh. No. I am not suggesting to take antiretrovirals. I am suggesting to get tested for the virus (and the immune dysfunction which probably comes along with it).
Finding out if it's there is valuable when trying to decide what to do next. I have only tried two antiretrovirals. I don't know if others work, or if these work on others. But I wouldn't recommend trying azt and raltegravir combo.
What will I do? I will try and see if there are any immune modualtory drugs (not surpressing) which could be useful in treating this condition.
But first things first. If I were you I would get tested for the virus, and the immune dysfuction. Perhaps burrascano has some advice, he has focused a lot on this virus lately.
Posts: 275 | From Home | Registered: May 2007
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I see adrenal and thyroid support helped CD57.
for me the mental-emotional pit of hell as I call it was caused by undiagnosed bartonella...
I knew enough to know it was psychiatric symptoms but for lots of reasons I did not get help down that path
(psych meds...BTDT and at the time I did not have any lyme literate help in my life...but at least symptomatic support and parasite detox...that helps too as some already said)
I am doing adrenal support and have done several thyroid supports in past...so a good reminder.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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immune modulation could help manage the cytokine clusterf*ck that results from XMRV, but perhaps so can ARVs. Check out Michael Snyderman's case study on ARVs and interleukin changes.
the proinflammatory cytokine storm that's always brewing with ME/CFS, along with NK cell downregulation is the best estimation to why ampligen has such a good track record in patients. It brings down the storm, fixes rnase-l dysfunction, and boosts NK cells (of which CD57 is a subset)
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nefferdun
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Low dose supplementation of thyroid medication probably won't do much for you. Your thyroid just stops producing what is being supplemented. The supplement does not raise your hormone level in your body until you take more than your thyroid is producing.
As an analogy if your thyroid is producing half a cup and you supplement one quarter of a cup, then your thyroid will just produce the difference or one quarter of a cup. You have to supplement more than half a cup to get any effect.
But you probably are hypothyroid and should see a doctor. You need to be off the supplement before you have blood work done. Make sure the doctor does not just do a TSH test. You need T4 and T3 and free T3.
It is good to find a doctor that looks at symptoms and not just tests - irregular periods if you are female, hair loss, outer third of eyebrow is missing, sluggishness, depression, mental slowness, brittle nails, dry hair and skin. . . . . .
My depression was like dementors sucking the life out of me. I saw an interview with the author of Harry Potter and she had clinical depression. She said the dementors represented this in her books. She described it as not a weepy crying depression which can be cathartic - but a state of numbness.
That is when I realized I was clinically depressed. Treatment is helping a lot. I don't need antidepressants which don't work on me anyway. Now there are times I thank my higher power that I can see how beautiful the day is or how wonderful it is to have my family together again.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I would disagree regarding thyroid supplementation -- the difference is between armour thyroid which is a natural supplement derived from pigs versus something like synthroid which is a chemical.
In my opinion Armour thyroid will actually boost your thyroid hormone levels --dose dependent of course.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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Well I had the whole thryoid workup done before any supplementation.....everything was "low normal" except TSH which was trending toward hypo. Good enough for me. I have a ton of symptoms of hypo and have my whole life. But not hugely obvious ones, just very subtle.
All I know is yesterday my practitioner said that you can throw all the abx in the world at this illness and it won't work if you don't have the adrenal and thyroid platform on which to build. That sort of fits my picture. So if I need to supplement low dose thyroid and adrenals for tx to work, that is great.
I am only at 1/2 grain of Armour and those first few days were amazing....now my body has gotten used to this and it's time to go up on the dose again. It will be a cycle of figuring out the adrenals and thyroid together as I go up.
I think I finally found a doc who gets it, as she has Lyme and babs herself. Dr Sherr writes that in Lyme, the liver has a problem making the T3 from the t4 causing a sort of cell resistance issue, in other words the cells are not getting the thyroid hormone that they need. It's more a resistance issue than a straight up thyroid problem.
Posts: 3528 | From US | Registered: Apr 2007
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sutherngrl
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I am agreeing with Hoosiers that this could possibly be an issue separate from LD. Psych issues must be addressed during and after LD if needed.
I have a mood disorder that was triggered by LD and am treating it while I also treat lyme. The hope is that it will improve with proper treatment.......pysch and lyme. But it is possible that psych issues can continue even after lyme is gone.
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