before you get excited...i have been having major anxiety issues for close to three months...24/7. My LLMD re-tested me 2 weeks ago for co-infections.
Tests came back and i tested Negative for Co's and LYME???!!!.....my LLMD strongly feels my issues are a psycological inbalance from being ill and wants me to go to a LL psycologist. She is not convinced per say but thinks it is worth checking out.
She said there is some basis for her assessment...says Columbia has done some work on it but i can't find it...
anyway i've spent as a much time as you on this site and can't say i ever saw anything like this happen for others....thoughts???
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
What lab did your LLMD use for testing. Co-infections Bartonella and Babesia are missed a lot. Major anxiety could be either one of these but I think Bart causes a lot of. Sorry you have this going on.
Posts: 383 | From Ar | Registered: May 2007
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posted
PS ... i tested positive with MDL 18 months ago.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dave,
Parasites and worms can cause major anxiety. If you haven't been treated for this, it might be a VERY good idea to check into it. Check the symptom list at
Dr. K. treats all of his patients for this co-infection first.
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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i know that and she knows that...i guess we both felt it was weird because i have tested positive before ...8 bands 4 which were lYme positive and this time nothing.....so the question is whether this is signficant or not so mcuh.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The tests are not accurate - you have to go by how you are feeling.
Killing parasites (meaning Lyme & co-infections & anything else that may be living in you) can cause anxiety. Many parasites effect the mind. It can also be a side effect of some drugs. I would take it as part of the larger picture.
I would like to read that you are better & that everything is fine - but it's all very difficult. We are living in difficult times. Anxiety can be from alot of things.
I would try to do some relaxation exercises to calm down. There are CDs you can get with all kind of guided mediations & relaxation exercises. I don't think the drugs work all that well but I never tried them. They may help if you are very bad off. It's just not my thing to take alot of drugs - if I can avoid them.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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We are in NJ and have had 2 positive tests - one IGenex and one LabCorp, we had alot of complications on ABX so we went to what we thought was a "better" LLMD on how to proceed and had a negative thru MDL.
This "LLMD" said we absolutely didn't have Lyme, never did.. hers test were negative, Igenex is controversial, she read Lab-Corp as negative where the other doc read as positive (??) so we believed her, she dismissed us (Dr. G) and we set off again for answers, believing our prior LLMD's were quacks.
She said is was a very serious auto-immune disorder and we should be in the hospital for test. She had to be right... she was a former Pres. of the ILADS...??
Then 7 months later, a week at Mayo, Mayo said Lyme serology was negative.. definitely not lyme. We came up with nothing and with more research realized the high percentage of false negatives/positives (how stupid of US!!) then we went to an LLMD in NY (Dr. H)..
Best thing we ever did.. still are awaiting Igenex bloodwork, but they definitely made the "clinical diagnosis" and he has started his ABX and supplements again... Now my husband is taking 55 rx/supplements a day.. 55!
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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posted
sandyk; I had the same experience with the "former pres.of ILADS.
For me her decsion to treat was based on whether or not the tick tested positive. I went 2 years of ticks bites (thats alot of tick bites) un-treated because they tested negative, yet I was sick and symptomatic.
If you have doubts or second guess your LLMD then it would not hurt to get a second pair of eyes to look at your case.
Is it possible that you are still producing antibodies to lyme and co. even if you no longer have it? My LLMD talkes alot about that and how to avoid that tx pitfall.
I believe Columbia has published some research on this idea or something similar. Memory not good this morning but are they not calling it Post Lyme Syndrome? You should be able to find it on their website and decipher the validity of the study for yourself.
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
Maybe you should go see Dr. B in NJ, a LL psychiatrist for his opinion.
Is your LLMD willing to continue treating?
My daughter's old LLMD stopped her abx because her tests were now negative. Even though her headache was still there, he thought it was a migraine and not Lyme. This doctor agreed that the tests were not very accurate, but still stopped her abx.
I took her to 2 different LLMD's for second and third opinions and they both agreed she was not cured.
Posts: 984 | From US | Registered: Dec 2007
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truly not sure...i honestly believe she thinks she is correct in her assessement and i think she could be.
jk, she asked me to go see a LL psycologist and then we'll take it from there....she provided me a name..for now i am off ABX. She didn't say she would stop treatment but feels this needs to be checked out. so i will follow up and see what happens..in the meantime i will line up another LLMD...i truthfully can say that what i have been experiencing the past three months feels like 100% anxiety...
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Dave do not know your history.
Have you ever treated Bartonella?
Our daughter had alot of anxiety, felt very nervous for no reason, jittery, etc. Would not go out.
Bart treament( Rifampin) took care of this.
Now, we are still treating Bart with Cipro and even at a small dose her anxiety is back, so far not as bad as before.
I am sorry you feel this way.
Hope you get your answers soon. Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You said she thinks its an "inbalance".....in that case then why doesn't she treat you with some psych meds?
What can a therapist do for an inbalance in the brain chemicals?
Talking does not change brain chemistry.
Maybe she thinks its trauma from dealing with chronic illness. In that case maybe a therapist could help.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
i think in the end i may be heading for some meds to straigthen this out but she does not want to make that call ...she wants me to see someone who is better suited to make the call.
she has simply asked me to see someone....more to follow....
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
i should mention that if its mental it is buried deep...i am pretty leveled headed guy who works things out for the most part.
this whole thing stings a bit because like many of you i was told i was bipolar before my lyme diagnosis and that it was all in my head....i am not very trusting of any Doctor any longer...now all that said ...work is major stressor and having this illness has been a major stressor...anything is possible.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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massman
Unregistered
posted
Sorry I suggested a non-drug way to deal with emotional imbalances. And sorry that I wasted our time.
no worries...and a not a waste of time. Always good to hear what help others.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
The only time anything like this happened to me was with mainstream Md's.
Were you tested at Igenex?
A GOOD LLMd knows that testing is NOT 100% reliable at any lab and should be diagnosed clinically.
You actually remember a tick bite too? Was the MDL test totally forgotten? What is wrong with this picture?
Even though it isn't a perfect test, have you ever had a CD57 blood test? If it is low - it is an absolute indicator of Lyme. But if it is normal - it doesn't mean you don't have Lyme. Just like PCR testing - if it is negative, it doesn't mean you don't have Ld but if positive, it is an absolute.
Also, C4A and C3A tests can help to determine if there is inflammation in the body caused by an autoimmune disease or a bacteria such as lyme.
I would soooo move on to another LLMd. This just sounds crazy (to be honest) coming from a supposed lyme literate doctor, especially when they know how bad testing is and all the other tests that are available.
Lastly - how did you feel on antibiotics? Worse, better? Either can indicate Lyme.
posted
And I have the opposite situation; nearly no symptoms, but there is a huge amount of circulating antibodies to Lyme, both IgM and IgG. I have to agree that just because we have antibodies that show up in our blood at any particular draw, that does not necessarily mean we are actively infected, and also the reverse is true.
But....please do consider the possibility that the symptoms may be related to treatment,or even to the response to being chronically ill for so long. My goodness, but I had some hard times with hopelessness during the worst of my illness, and I had always been a very positive and well adjusted person prior to that. I do not believe it was the tick borne illness making me feel taht way, but the situation I was in, and having to face the possibility of being like that long term, if not forever.
Please keep us posted on how you are doing.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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WildCondor
Unregistered
posted
Testing doesn't mean much of anything, sad but true. You can test all negative and still have Lyme and co-infections. You have to go by your symptoms and response to treatment.
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posted
Dave,If you haven't, be sure you are checked for KPU Pyrroluria. It can cause all kind of emotional and physical symptoms. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Thanks everyone...a lot to consider...not going to drive myself nuts...going to see someone at her request...she could be right she could be wrong...the anxiety i have been feeling for months does not wax and wane and could in fact be a result of the physical and emtional toll of treating...
i'll just let it play out and be prepared to line up a new LLMD or perhaps learn something new....my mind is open and i am my own advocate...so not worried one way or another....and of course will try anything to get this anxiety to clear up.
Dave
i'll let you know how i make out.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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