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» LymeNet Flash » Questions and Discussion » General Support » Anybody out there a Neuropsychiatric Lymie?

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Author Topic: Anybody out there a Neuropsychiatric Lymie?
MissMari
LymeNet Contributor
Member # 11274

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Hey everyone,

After YEARS of nobody believing me

(despite the red round rash bigger than my hand and the ticks in my area, I had ONE "borderline positive" Lyme test in 2000)

and as a result NO REAL TREATMENT...

On top of the joint pain, heart problems, and other physical problems,

I now have brain damage and a bunch of psychiatric symptoms including depression, suicidal thoughts, and anxiety.

Most days I cannot remember what I'm talking about, try to describe what I mean because I can't think of the word (there's lots of references to "thingees" and pointing), etc.

Is there anybody else out there with emotional symptoms to such a degree?

And -- has anyone out there with Lyme been prescribed an antidepressant (Paxil) which actually made everything WORSE?

Mar

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
feelfit
Frequent Contributor (1K+ posts)
Member # 12770

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Me. I got the whole bag too. I rarely even post about my joint pain/ joint surgeries etc. Because they don't even come close to the brain stuff....i don't worry about the joint pain.

But the anxiety, head pressure, eye weirdness, depression, terrible head bangers, that is killing me. All of my tears are shed over this.

When I was not diagnosed Paxil helped me. Since diagnosis and treatment, paxil doesn't work in the same way as it has in the past. So I stopped.

I feel for you. If you need an ear PM me.

Best,
Feelfit

Posts: 3975 | From usa | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Wildthing
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Please stay away from Paxil. At the very least read the warning insert that is 3 feet long, that comes with the drug.

If you didn't get the insert ask the pharmacist for it.

I have 3 friends that committed suicide while on Paxil. It's no wonder you are depressed and suicidal.

Good Luck with everything, hope it gets better for you.

--------------------
Powerful Women's Motto: Live your life in such a way that When your feet hit the floor In the morning, Satan shudders & says 'Oh ****!...She's Awake!!

WildThing
www.wildthingstodo.com

Posts: 160 | From Royersford,PA,USA | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
Ocean
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I'm sorry you are going through this and boy do I understand! The first 2 years after I got my 'summer flu' in July, I had panic attacks, anxiety, feeling like I was going to keel over and die any second and depression. The depression kicked in after about 6 months of being sick. I didn't know I was depressed, it was back in 1997 and I was a teen and no one talked about it back then. I thought about death constantly. I would look at my friends at school and wonder why they weren't crying all the time. I felt like I knew the 'secret', that life is nothing because we are all going to die someday. I didn't dare tell anyone for fear that they would start feeling the same way.

Nothing mattered to me anymore. I cried all the time until I felt numb, then I would go to bed and repeat the next day. It was TERRIBLE. I had a plan to commit suicide once, and by God's Grace, He had my sister beg me to go somewhere with her and in those few hours I realized that people care and that I may be able to get better.

I have never gotten the depression like that since and I pray that I don't. I DO currently have severe anxiety/panic. I don't drive, feel very anxious in stores, ect.

My husband has seen me over the years feel pretty normal and then I relapsed and get the anxiety/fatigue back, I always thought I was just stressed out, just found out I had Lyme last week.

A doc once gave me Zoloft for the anxiety, but I didn't take it, I was too afraid and my baby was only 10 weeks old and I had planned to breastfeed her for 2.5 years like I had my first child. My oldest son has anxiety/strange phobias and I suspect possible Lyme.

I just started with the joint pain this year. Had about every other symptom, that's the reason I got tested after I found out it could cause anxiety/depression ect.

My LLMD ordered a Neurotransmitter test, I haven't done it yet due to insurance issues, but I think it will help him figure out what is going on with my brain. You may want to ask your LLMD about that.

Like Feelfit (my twin [Big Grin] ) said, the mental stuff is way worse for me. That is how I knew I could have a natural labor/birth (which I've had 3 now =). I told my husband that emotional/mental pain is SO much worse than physical pain for me. And I was right, sure it hurt, but NOTHING like depression. NOTHING!!!


Good luck to you and keep us posted, seems like not as many people want to talk about their psych issues or maybe we are just some of the 'lucky' ones that get them so bad!

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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MaryL
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I have "bipolar disorder" that I think likely came from the Lyme. I was hospitalized for several days as a result.

I've tried the neurotransmitter protocol in the past & nearly had serotonin sickness - it sent my serotonin levels through the roof.

Now I'm on prozac 60 mg. a day & geodon 40 mg. a day. That is what it takes to make me more "normal".

I tried paxil, wellbutrin, zoloft, lithium, abilify, risperdal in the past, all with unsatisfactory results - either because they didn't work or the side effects were horrendous.

Good luck to you.

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Keebler
Honored Contributor (25K+ posts)
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-

You asked: " . . .has anyone out there with Lyme been prescribed an antidepressant . . ."

Just about EVERYONE, as most doctors think that is the "cure" for a "difficult" patient.

You are in very good company. Most of us have been there. It's still very difficult to deal with neuro-cognitive stuff until the body is well.


In line with what Wildthing said, Paxil nearly killed me, too.

I came very close to suicide in '94 when (after on paxil and trying xanax) I lost my car, my apt. and my unemployment ran out. I was passing out dozens of ties a week and could barely walk or talk (and that's just part of it all).


I had been diagnosed bi-polar just because I cried a lot but I could also still laugh at a joke. It baffled the doctor how I could be crying but still have a sense of humor.

But all the anti-depressants made me MUCH worse. Why? Misdiagnosis.

I had a bad reaction to steroids I was given to be able to work (did not know then that I had lyme, though. Steroids made the lyme blossom and I cried more).


For me, magnesium, fish oil and B-vitamins saved my life. I've never really gotten what I need around the lyme, but I do the best I can with what I have. In the meantime, these 3 things helped.

Magnesium glycinate or citrate.

B-complex

Fish oil.

And, for myself, a gluten-free diet is a superb mood lifter. If I eat wheat at all now I get depressed. Very interesting.

--


There are many, many articles that show lyme affects mood, etc. And many say after proper treatment, that lifts.


The infections and weakened body can create depression, etc. The toxic load to the liver can cause depression, too. Any drug that uses the liver detox pathway Cytochrome P-450 can create a harder time for the liver IF the liver is not working well.

And, as lyme is a very toxic illness, the liver is affected from the get-go.


--


I see you are getting no complete assessment / treatment for lyme/TBD. I looked back over some of your posts and this has been going on now for 13 years.


Can you get to a LLMD ? You will likely NOT get proper diagnoses/treatment from regular doctors and expecting that will just waste more time.


I know you've seen "Under Our Skin."

Have you read some of the books about treatment such as from Singleton, Buhner, Zhang?

Is there a local support group that could help guide you? Do you have a good friend who may be able to sort through some of this and help you get on a path here ?

There may be things other than lyme, such as other chronic stealth (hidden) infections. A good LLMD will assess for those, too. Mycoplasma, Cpn, HHV-6 are just some of those.

But from some of your earlier posts about lyme, starting there is best.

I hope you find what you need to move on to the next step - and a key to success. It is possible, really.


-

[ 25. October 2008, 05:42 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-

This gem of a book, by an ILADS member LLMD, holds great information about pharmaceutical and complementary treatments including brain and adrenal support which can really help lift depression.


http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.


Web site: www.lymedoctor.com


=================================


http://tinyurl.com/5vnsjg

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

Web site through: www.gaianstudies.org/lyme-updates.htm


==================================


http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

-web site: www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com


======================


http://tinyurl.com/5crsjv


Cure Unknown: Inside the Lyme Epidemic - by Pamela Weintraub

This details what an entire family went through. Hopefully, having this knowledge of their journey will help others to get better treatment, sooner.


Here's a thread about a recent radio interview by the author:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=073195


-

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Keebler
Honored Contributor (25K+ posts)
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-


http://tinyurl.com/2dmvs2


From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )


CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:


" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- FULL ARTICLE AT LINK ABOVE.


Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.


-

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-


Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates


======


Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-

SAMe might also be of help. Best to start with a low dose and work up.


-

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MissMari
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Oh my God/dess! THANK YOU THANK YOU THANK YOU everybody for replying to me and for your suggestions!

Just to hear that it's not just ME is a great comfort and inspiration!

Wow, some days (ok, most days) are just generalized hell....

it's awful to wake up in the morning and the first thought is not "gee, another day! look at that sun! the leaves are turning color!" (which is what I normally would have thought), but rather

"oh crap. another day."

I just don't want that to continue.

I am presently checking out the possibilities of some of the LL docs that I got thru this site as well as what I might get thru the county services.

Wish I had insurance (!) but even when I did, it didn't do me much good!

Pressing onward....

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
kelmo
Frequent Contributor (1K+ posts)
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MissMari...Paxil nearly killed me, as well.

For me, Wellbutrin saved my life. But, it is ineffective for bi-polar disorder.

Bi-polar needs a different class of medication.

Don't feel bad for needing the medications. Your brain is infected and it throws off the chemical imbalance.

Finding the right medication can be liberating.

Some believe that the anti-depressants are a great support.

My daughter has not been diagnosed with bi-polar, but she does have anxiety and OCD.

Take care.

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Sheryl777
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The bas****s are also all over my head but there are things I do to help. When I feel around my head, I can tell where they are because those areas are slightly swollen.

I put Everclear on a cotton ball and rub those areas. I also use an aromatherapy oil of 20% eucalyptus, lemon, frankincense, patchouli, geranium, and thyme essential oil in a base of 80% grapeseed oil. Hot water bottles against those areas also help.

I've not done any antibiotics because I'm afraid of getting onto the antibiotic treadmill. The herbs that I use that really help are Andrographis by Nature's Way, the lyme formula created by kwbotanicals.com, and powdered cat's claw that I cap myself from mountainroseherbs.com. The cat's claw gave me diarrhea for a week or so until my body got used to it. I have no connection to any of these companies.

Good luck,

Sheryl

Posts: 258 | From Spokane, WA | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
   

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