Please someone tell me if this sounds like Lymes, I have been misdiagnosed with anxiety disorder

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NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 11/27/2008 5:45 PM (GMT -6)   
Hey everyone, my name is Gary. I'm an RN and just turned 40 today. This all started about 20 months ago. I have tried about 26 Prescription meds for Anxiety disorder and I have been deteriorating lately. Here is whats going on symptom wise:

Shaky, Inner tension, Nervous, Tachycardia, S.O.B., Chronic Fatigue, Stiff Neck, Migraines galore, Joint Pain Starting in my ankles and all the way up, Chronic Fatigue, Irritability at times, Jaw stiffness, Muscle weakness, Right eye pupil is not round and is oval almost like a cataract, Cold Flahes at times, Night sweats at times, my mood is not great and I feel depressed, but not suicidal or anything even remotely close. I think thats about it.

I still have anxiety, but it's not that bad . I have no sense of doom or fear consistant with Generalized Anxiety Disorder. I've been in therapy weekly for the last year or so and have switched therapists a few times. My current therapist just ended relations with me as he said that it appears I have an undiagnosed medical condition rather than a Psychological problem and therfore feels he is wasting my time and money. I honestly agree.

I'm on a Beta Blocker, which doesn't control my heart rate. I'm on Klonopin 1mg twice/day, and Xanax 0.5mg as needed. I hardly take it.

I've been an RN x 16 years and have had lots of testing done since this began, but never had Lymes ruled out. I am going for the bloodwork hopefully tomorrow. Somehow, through all of my research, I didn't pick up on the Lymes as a possible cause of all of this, nor did any of the MD's I've seen. It seems that many of the symptoms have worsened dramatically over the past few months. I'm at the point where I feel like I need to go inpatient somewhere. I'm 5'10 200lbs. I was very active before all of this started. I never had the butterfly rash as far as I know unless it was on my back and went unnoticed. I did have an MRI recently and I was told by the ER MD that is was clean. I'm reading that white lesions don't have to be present for one to have the CNS disorders associated with Lymes.

I won't hold anyone to anything. I'm just looking for opinions as to whether anyone who reads this thinks that this could very well be Lymes.

Thank you all so much in advance,

Regards,

Gary ......... BSN, RN

NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 11/27/2008 5:53 PM (GMT -6)   
somehow this tripple posted.. my appologies

Smiffy51
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 11/28/2008 5:36 AM (GMT -6)   
Good luck with your testing Gary, it does sound like Lyme disease. Let us know how you get on.

My borrelia and co-infections were found by live blood microscopy after my standard Lyme test gave a false negative, which I understand it often does.

What we all need for diagnosis is a veterinary, not a doctor! Veterinaries haven't forgotten how to use a microscope.
housebound in the UK with 'severe M.E./CFs & fibromyalgia' for 21 years - have just found out I actually have had Lyme, micro-cocci & crytostrongylus pulmoni all these years


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 11/28/2008 9:09 AM (GMT -6)   
Isnt it intresting how easily we get diagnosed with mentall illness, its probably because this is the only diagnosis a doctor can give without having to prove it with blood work! Anyhow my heart goes out to you, I would recommend you see a nephrologist or cardiologist to help control your pulse, I am currenlty on two blood pressure meds to control my pressure and pulse, it is very scarry and exhausting, you might also want to request a cardiac stress test, keep searching and you will find an answer

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/28/2008 2:03 PM (GMT -6)   
I had been told the same thing--its all stress. I realized that stress for me does not cause shooting pains in my joints, burning feelings in 
feet, toes, ankles and fingers, vibration feelings and tingling in my left foot, and non stop twitching. I too had a ton of tests done and finally saw an LLMD who clinically dx me with lyme. I had a standard test through LC and it was fine, went to Ig in Palo Alto where I tested pos on 31 and IND on 34 41 on the IMG. This is not CDC standards but I am still being treated and will get retested in 6 wks to see if any die off shows up.
 
Pls keep in mind that lumbar p, mri and blood work do not show positives. See an LLMD.....people die from this and many end up on disability if not caught in time.
----------------------------------------------------------------------
33 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, GIVEN CLINCAL DX ON 11/17-ON DOXY, ZITHRO, FLAGYL
 
 
 
 
 
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 12:04 PM (GMT -6)   
Lyme disease can cause all of your symptoms. You may want to find an LLMD for diagnosis and to see if treating it improves things for you!

i hope you get to the bottom of it.

Why doctors make a snap judgment of someone's mental health is beyond me. WHO ARE THEY If they're doctors and they delude themselves to the extent that they're egos can make that kind of snap judgment, that says a lot about them. There job is to diagnose, treat and cure.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 11/30/2008 1:11 AM (GMT -6)   
Hi Gary, welcome to the forum.

Your sx could definetly be Lyme. Make sure you see a LLMD. You can find a list at www.ILADs.com,
also look up the symptoms list and read the Burrascano 2005, or 2008 report. It's very imformative!

I am (and hope to continue) an ER RN for 4 years. Working in the ER, you get used to having results ASAP. When I started having symptoms, I of course tried to self-diagnosis. But there was no fast answer! I had some of my co-workers tell me it's probably MS. So that became the focus. While researching my sx online, I actually came across this web site and got lots of info. This lead to lots more research and finally went to my PCP whom was totally closed minded! I dropped him fast and demanded to see a neurologist. She gave me the lab slip for IGenX to get Lyme testing. (you also need the co-infections panel done at the same time). But one very important thing about Lyme, it is a clinical diagnosis!!! The diagnostic tests are far from perfect.

Statistically, a very high percentage of people with Lyme actually get diagnosed by a psychiatrist or therapist of some sort.

I have an appt with a cardiologist on 12/8. I've got a murmur and been experiencing heart palpations. Currently I'm on Biaxin, hydroxychloriquine, Cipro and artemisinin. The combo of Biaxin and cipro can give palpations! So I'm getting a stress test.

I think as a nurse most of the anxiety comes from not knowing what to do or what the heck is wrong. When it comes to being the patient, we really suck at it!!! My level of anxiety didn't go down til I got lots of info about Lyme. And this forum helps tremendously. But now my anxiety has shifted from "what is wrong with me and how do I treat it" to "am I going to be able to return to work and when".

I hope this helps. Let us know what happens with the LLMD.
God's blessings to you - Lisa

p.s. I think I tried klonopin and it just made me more dizzy than I already was.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 11/30/2008 12:24 PM (GMT -6)   
To LupnerRN

You spoke of "you also need the co-infections panel done at the same time". I had the Elisa, Western Blot, PCR, and ANA... Did we miss anything ? Oh and how long does it take to get results. I had my blood drawn yesterday morning (Saturday). Thanks in advance...

Gary

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/1/2008 1:12 AM (GMT -6)   
I found that a therapist is not really what you need. You don't need to figure out what it stressing you out and making you feel bad. You already know what is making you feel bad, lyme, no?

Try going to a pharma-phycoligist...I cannot spell. Lol

They specialize in medications and getting rid of your problems. All you do is tell them the mental stuff that is bothering you. If you ask them if they know anything about the neurological problems lyme can cause, you will get your answer. It may not matter. A good Dr. like mine types thing in when I mention them and has stuff copied out for me...liek the symptons of lyme..lol
so. get medicated by someone good so that you can function and be happy. and be in for the fight against your lyme.
I met another nurse on here and she was in alot of pain. I told her about cymbalta for the pain and she is now thrilled. it does not kill lyme of course. But it does make it so that
you can function and not be tired or in pain or depressed either.
Best,
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/1/2008 1:20 AM (GMT -6)   
Sounds like PMS Gary...lol just kidding.:)
I was put on lamictal. It got rid of my anxiety, and my chest pains, and the dizzy feelings and the restlessness. I could not sit still yet could not sleep either. I would chase my tail. lol
Zanax is good for PMS and that is about it.
I was started on 25 mg day and then worked up to 75. I have two different Dr.s who both want me at 300mg. No way! I am fine on 75 mg. You be the judge of your doses. the lyme will play dirty tricks on different people. and you just never know if it is going to be a good thing or a bad thing. so start low so that if it is bad. it is not real bad.
I had a siezer one night on one med. scary. but took an ambein to get out of it.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/1/2008 1:30 AM (GMT -6)   
Try looking into the homeopathic medicines. they are a bit radical. But they are doing the trick for me now. I am in week...ummm 7 I think, I am a lab rat...lol
the out of the box thinking is that the abx do not work. and that colloidal silver and perioxide and boosting the immune system, that it can then do the job itself. Kill the lyme.
My LLMD told me that it was a good thing that I was rich. And that my treatment was going to run me 3-5,00 a week, for a year and a half.
Well forget about that. She say money alright. I did not trust her. And I would never do that treatment to my daughters.
Since the New England Journal of Medicine set the standard for the USA and for most of the world. They say very firmly that tons of abx is dangerous and will not kill the lyme.
So they have said that my treatment is what.....I wonder, just crazy I am sure. But I feel great after 7 weeks and have 3 more to go. scared yes. Will do more treatment if I have to after x-mas along with my little one. together with her.
Envita in AZ.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 12/1/2008 7:51 AM (GMT -6)   

Hi Gary, if you have lyme, you are in the right place for support and help.  The people on this web site often know more about this disease than the doctors treating them.  Only about 50% of people infected with lyme get the bull's eye rash so you might not have had it.  There are other tick born infections that can cause your symptoms and most people with lyme are co infected with some other pathogen.  I have read that many people with bartonella have anxiety attacks and depression.  They also have bone pain - most commonly sore feet.  One of the characteristics of lyme is that it goes dormant so in the early stages of infection your symptoms may come and go and you will have different symtoms depending on what part of the body the bacteria is attacking.  Later, when you become chronically ill, you feel very sick most of the time. 

One of the diagnostic tools used is a round of antibiotics because when you have lyme, you actually get worse when you start treatment.  This is thought to be because your kidneys and liver cannot process all the toxins out of your body quickly enough so your symptoms explode.  It is called the herxhiemer reaction and is specific to lyme.  The first abx used is often dioxycycline in a very high dose (300-600 mg).  So even if your tests come back negative, a LLMD would probably try the abx to see what happens.  Even if you are opposed to using long term abx, it is a very good idea to knock back the bacteria that have gotten out of control in your body before trying any other approach.  The lyme spirochete is related to syphilus and if you had that you probably would leap for the abx.  When I started to improve and felt well (most of the time) I went to herbal remedies but I am not sure that it is working.  This is a very hard disease to get rid of.

You should avoid alcohol, sugar, processed foods and food that converts quickly to glucose because the bacteria thrives on it.  Also if you start abx, you will need to supplement probiotics.  The bacteria also diminish magnesium and B6 which you should supplement.

I hope you have found your answer.  I was ignored by 6 doctors before I discovered what I have online while researching chronic fatigue.  I had the rash. 

PS.  It is Lyme disease, not lymes - a common mistake :-)


ponder 44
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/19/2009 8:23 AM (GMT -6)   
Hi Gary,

I just found your link by chance, I wasn't even a member on here.
Yes there are definitely similarities between us.
In 2004 I was exercising regularly on my road bike, I was fit well and had never been sick.
Then I got a rash on my arm, didn't know what it was, and basically ignored it, because that is what I was like.
Within 2 weeks I got some sort of Virus, headaches,photophobia, stiff neck, bad back, and lumps in my lymphatic system. Went to the Doc, he basically told me he couldn't feel the lumps in armpits and sent me home. Then after another 2 weeks I got burning in the tips of my fingers (ulnar nerves) of both hands.
Got referred to rheumatology, told me it was Fibromyalgia.
I went through hell for the next two years, no diagnosis.
My health got worse, I got very stressed, and blood pressure and heart pounded. I couldn't work and had to give up running my own Company. I became extremely depressed and was in hell every day.
I found a health site called www.dailystrength.org and started to research my symptoms.
Lyme came up and it fitted perfectly, I also remembered the rash on my arm.

I have had a Western Blot, and ELISA both came back negative.
apparently the Lyme centre in Southampton doesn't diagnose on the titler test if inconclusive.
Had lots of Blood work and MRI, and LP all come back negative!!!

I have two friends who I know are ill, both got tick bites and both are undiagnosed.

I am based on the Hampshire/Wiltshire border (New Forrest and Salisbury Plain bad areas for Lyme)

Let me know if I can help

D.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 12:46 PM (GMT -6)   
did you get your test back yet?
What lab did you send them to?
Igenex?
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


ponder 44
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/19/2009 4:31 PM (GMT -6)   
Hi Martha and Gracie's Mom,

No, I am in the UK and we don't get diagnosis and treatment here.
Lyme is a very tough road, Martha Im sorry to read about your Daughters
that must be heartbreaking, Im very Sorry.
I am a Dad so understand what you must feel.
My friend Shari is in exactly the same position as you.

Regards
D.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/19/2009 4:52 PM (GMT -6)   
ponder 44,

what do you mean you don't get diagnosed or treated in the UK? I'm worried. If you have Lyme you need to start meds ASAP.

Some LLMD will treat online or over the phone. You can find my LLMD at www.harmonywomenshealth.com. you can get her email address and ask her questions. I will be seeing her on the 28th of Jan and would be happy to talk to her about you if you'd like.

Let me know. And God Bless!

Gary, how are you doing? Sorry I didn't reply to you last comment. December got crazy. What are the details of your treatment?

Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 1/19/2009 6:55 PM (GMT -6)   

Hi Gary,

All of your symptoms sure do sound like my daughter's, and the hospital and regular medical doctors diagnosed her as psychosomatic.  Thank God we found an excellent pediatric lyme specialist to take care of her.  The regular lyme tests came back negative several times; however, I had our new internist do a western blot and it came back positive.  Then the lyme specialist repeated the tests using his labs (IGeneX, Specialty Labs, Clongen) and they all came back positive for lyme and babesia.  Get a lyme literate doctor and stay away from the medical doctors because they don't understand and you are wasting time and money with them.  Good luck and I hope you are feeling better soon.

Lisa

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