It's 'ALL IN MY HEAD

After thinking about my 'indeterminate' blood test results and my somewhat atypical TBD symptoms, my LLMD casually mentioned I look into the healing methods of a certain doctor.  

This doctor believes that chronic back/neck pain, sciatica, bursitis, tendonitis, fibro etc. (that are not the result of serious physical injury and/or have been ruled out as serious injury or medical condition by MRI,  X-ray, blood tests or other).....are really physical manifestations of pain caused by the mind....

.....wherein repressed mental issues, stress, etc actually tell the brain to stop sending oxygen to various parts of the body (muscles, etc.) which then results in REAL, unimaginary pain.  Of course this all leads down the dark road to either the assumption or belief that being in pain--in certain cases-- is a way to avoid life.   

I am by no means taking a side here-- TBD's are REAL of course. I'm Just doing 'reporting' in an attempt to gather opinions as some members-- especially those with borderline blood test results and serious PAIN---  might have been steered in the direction of this doctor's findings.  

What to think about this 'mind over pain' self healing and treatment?  No idea.

Are my pain issues really caused by a TBD?  Don't know...yet.  All I can say is that MAYBE I was/am under subconcious 'stress' and repressed negative emotions, and thus mentally created all of my chronic pain. 

On the other hand....I don't see myself as fitting into that box!  

I was a normal, fit, happy, athletic person who's body went downhill with numerous enough symptoms to highly suspect a TBD.  And why not?  The daughter of a friend of my father was undiagnosed with a TBD for 20 years and is now incapacitated in a wheelchair....and thus the creation of this wonderful forum....thus the creation of TBD awareness.  I certainly don't need to preach to the choir here!  So, back to business....

After a little over  two weelks on Doxy my back/neck and shoulder pain has nearly disappeared.  As of yesterday my roiling hot flashes and sound sensitivity has diminished.  My Herx reactions to the Doxy were very significant! Teeth pain is gone--so far.  Yes....I am feeling WAY BETTER !!   However, elbow pain (tendonitis) is still with me as are other issues. But I digress....

Is all this 'healing' just a coincidence? Was I reall mentally/subconsciously just  looking for the smoking gun of a TBD as an excuse to ease my (troubled?) mind in order to get myself   'on the mend'  psychosomatically?   Did I just get better too fast for it to really be a TBD or the abx?  

I do believe the mind can be a powerful healer....I do believe this doctor has had great success in treating psychosomatically created pain.  But, but but...

......where does that leave me and others like me who get back an indeterminate blood test that says nothing more than I am a little bit pregnant?     

My LLMD said that if the Doxy is working for me, then I should stay on it for as long as I want to....get re-tested at some point...and so on.  I will do that...

.... and he's on the fence about the validity of IgenX....leaving it up to me to decide if I want to test with them. 

By no means is he taking my blood results nor my health lightly.  But.....the fact that he suggested I look into the methods of the particular doctor I mentioned above,  points to the fact that he thinks my symptoms might be 'all in my head'.

Conversely,  he is open to alternative medicine.... and probably is just trying to be helpful. 

Am I NOW thoroughly confused, stressed out and on the verge of mental derangement?  Yes!   Tomorrow all of my symptoms will come back!  That was a joke of course....but it really isn't funny.  Grrrrrr! 

P.S. :   This 'mind over matter' doctor says that 'writers' especially fall victim to stress induced pain more than those in other professions.  I am a writer.  Go figure. 

Best to all.... and to all a good, great, fantastic, wonderful day!  And that's NOT  a joke!  :)

Hi Cat!!
My thoughts went that direction for longer than needed not all that long ago. I considered that to be a large enough possibility, that I had actually done a bit of research reading on the whole subject. I was truly concerned that maybe I wouldn't let myself heal!! I actually considered filing for Disability on psychosomatic illnesses. BUT - understand, having Lyme & company controlling your life can be a very, very painful thing!!

After reading several of your posts, I don't believe that you fit into that category. Re-read the symptom lists, think about your state of mind when you first started getting ill, and when you started to get ill enough to effect your daily life. There are waaaay too many people who get told this is just 'all in their heads' (me included), I believe it's simply because that doc's or therapists' uneducated mind can't figure out how else this can happen, thus they are not following an oath I thought all docs followed - "First do no harm". I have changed my mind on that - I don't think they really take an oath like that now. How could they???

The fact that you are getting better with the use of abx, specifically Doxy, is not surprising for those who have a tick-borne infections. For some with recent infections, the right dose of doxy each day really does go a long way!! I have been re-infected a few times ( ) and although I had some symptoms announce very loudly that they were back in full strength (UGH!) , my gp put me on the correct dose of Doxy & things got better after about 1 1/2 weeks!!

I think we can all agree that it is highly unlikely that anyone can be only a little bit pregnant!!!! The same goes for those of us with TBD's!!! You are either in or out!! If your LLMD started & continued treatment, then he believes that you have TBD's no matter what the blood tests may show!! I was unable to test positive (by blood tests) for any TBD's until after I had spent an entire year on abx. Fortunately I had found a Neuro that had dxed me with facial palsey due to TBD's and that was enough to get me in to see a great LLMD who understood that at this point in time the only way to evaluate a person for tbd's is clinically. He has also stated that a) a Lyme-like illness deserves a Lyme-like treatment & (b) absence of proof is not proof of absence!! Very wise man, great LLMD doc & researcher - Dr. Edwin Masters - RIP.

I am also a believer of the mind being able to do a lot of healing - just not all. I believe in the power of the mind to help us get to a 'better place' so that healing can happen, increase, & complete. Although abx therapy wasn't working for me & I switched to alternative med to heal me - I still believe in the power of abx & will still use them if need be.

Please just stay on the abx!!! Should you choose to follow what Dr. Burrascano's treatment guidelines, you should stay on the abx for two months after ALL symptoms have resolved - that would include your "tennis elbow". Ask anyone who has late stage, chronic Lyme - get the treatment you need regardless of what some docs you may come across tells you!! Most docs don't have a clue when it comes to the real knowledge of TBD's and how to treat them!!!

I would think that your LLMD was just trying to be helpful in reducing some of your pain without the use of drugs????

Hang in there,Catt!!!

Hope this helps in some small way!

Trav



BTW, 'they' also say that those with a type A personality have a higher incidence of TBD's!!

oh, this makes me so sad... Pain is NOT in our heads! It is such a devaluation of people to think this. There is power in positive thinking no doubt, a lot of power. But I totally agree with Traveler, we cannot out think all pain. And sometimes emotions get stuck because we have pain.


I am being treated in a whole new way with a Dr. that used to be a TMJ surgeon but now treats the jaw - and the whole autonomic system with appliances. (yes I was a Lyme patient) He is doing amazing work.

You can read some of his papers at his website:

oralsystembiology.com

and read a bit on Lits's post "So So Lost".

Anyway, just wanted to say 'thinking of you'.

Be Well,
wacko woman

welll now I have to look up TBD ? but the only thing that is all in your head is BACTERIA swimming around the blood brain barrier. I think we all have such a hard time because there is not the right drug to treat the brain and make it stronger.

So many things that are prescribed for depression or ADD-ish stuff or even pain through brain chemistry ..all have side effectts of different reactions . the question is ?? should we be taking any of these brain chemistry meds if we have all this bacteria in our brains. LYME literate Pharmacologist psychiatrists are the other type of doctors that are very few.

I really think the optimal treatment plan has to be through a solid LLMD and a LYME pharmacologist psychiatrist.

I think our recovery would be faster and our pain levels would drop significantly. If we could remove the depression is would be half the battle. It would be great if we could get stabalalized on the right type of antidepressant or brain chemistry drug FIRST and that would help so much strengthen the immune system and neuro stuff and THEN start POUNDING the antibiotics or what ever. But without this brain issue being studied extensively , thoroughly and reworked and tested
YES ..IT IS ALL IN OUR HEADS. and NO YOU CAN NOT JUST THROW ANY ANTIDEPRESSANT AT A LYME PATIENT .

THere has got to be a SCAN that shows all of the parts of the brain. really it would be great too if there was such a thing as a low impact type of brain biopsy. But like that scan that Daniel Amen does. I wonder how really helpful that would be for lyme patients?

I really feel my brain chemistry is the key to my healing and looking back I can see how it has been a major problem my whole life.
Even in cnnection to our adrenal fatigue .. My brain was not producing enough ACTH.

yes it is all in our heads. so why isn't this really being investigated and tested with scans along with all the blood work.

who here in this group has a lyme literate shrink???

Bucci,

Interesting you should mention the lyme literate shrink idea. The woman (who I'll call JANE) that I spoke with yesterday and mentioned in my last post above...

..... told me that the best doctors she's seen for Lyme were also trained in Psychiatry FIRST and took up aggressive Lyme treatment (with abx, etc) rather by accident due to patient issues and became top LLMD's as a secondary part of their practice.

It seems they really 'get it' ---believing in Chronic Lyme. I will investigate these Docs further and schedule an apponitment with one of them ASAP.

I will have another conversation with JANE this weekend--- she can interpret my blood results which I'll also post here FYI.....and for others who are curious and/or have come back with BORDERLINE or "indeterminate".

My brother in law has been finally diagnosed with Temporal Lobe Epilepsy---still a rather loose diagnosis that has been ongoing for 15 years. He has been on every anti-psychotic, and other brain drug known to man at one time or another---still is-- and exhibits (ten fold) practically every single symptom of every TBD in its advanced stage except for being crippled and in a wheelchair.

Are these symptoms mereley side effects of all this brain medication? Yes and/or possibly. They do have TERRIBLE side effects. Are his brain fogs, siezures, rages, dillusions, voices in his head mereley a result of having TBD's.....MAYBE!

However....and perhaps....IF he's (only) had TBD's for this long I think he woud be way worse shape than he is. But then he could have been infected at any time, even recently, thus exacerbating his symptoms. He was on Cipro for a while, for a non Lyme related infection (??) and maybe that sent the little buggers into hiding or whatever it is they do.

My sister is encouraging him to get a blood test for TBD's.....but when you're dealing with stubborn mental cases they can get very resistant to 'more testing'. Even when its simple and might be able to rule something out.

OHHH KAAAYYY......TBD Tick Born Disease.

well thank God for that. I was going to look it up to see if maybe I have this new TBD thing on top of the lyme.

Great! One less thing I have to worry about getting since I already have it.

My Madison Ave. pharmacologist shrink asked me THREE times ..."Elaine, are you sure you don't have lyme?"

Everytime, I would cringe and twitch in my chair thinking about how hopless and sick my Father's life was from lyme.

I refused to get tested. I just DIDN"T want to have lyme. If I had listened to her I would have saved 10 yrs off this lyme bid. TEN YEARS of more and more damage.

YEP, it is the Shrinks in the end that are gonna get more and more involved. This is very specific.


Actually, Razzle, if I had the money and you had the energy I would drive you everyday to the psychiatric lyme lab so you could put all these years of investigating to work. I think you are brilliant.

This is what we need like they did back in the seventies when they moved the pharmacutical companies INTO the mental hospitols to come up with the right medications for the high volume of people who were not getting well.
does anyone remember when that happened ? when suddenly they came up with these meds and so many people were being released. I think they were trying to make it a criminal offence if these people got released and didn't continue taking their meds? something ike that.

We have got to have hospitols dedicated to this treatment . There is such a long way to go and too much suffering and not enough success stories.

My life is so gone. I just came from my lyme doctor after driving 3 hours and am so disgusted with him. He is too stoned
on pain meds. He knows a lot but I am going in circles with him. Today he asked me if I wanted to go on PROZAC.

6 months ago he told me he never give out antidepressants and told me to take DLPHELANALYINE.

he sent me home with Dalmaine to sleep and nuvigal (the new provigal) to stay awake in the day. The nuvigal is $300

TEN DOLLARS A PILL. I don't have medication coverage.

I'm in IHOP on my 3 hour ride home crying whole way in the car. I hate IHOP. the pancakes were RAW. and the syrup is fake.
he told me to take that visual something or other test that dr shoemaker has on line. I have to look it up.

do you know what that is Razzle???

Great posts on this thread.... This entry will not be nearly as interesting as the others, but FROM EXPERIENCE if the symptoms are going away or lessened by abx (namely the Doxy in your case) then the proof is in the pudding. A mere two days of Cipro kept me from committing suicide and it definitely wasn't mind over matter.... When the body is being attacked by God Only Knows What Kind of Bugs, then the mind and spirit can't function all that well either.

Cat111, If you send the da** doctor a couple of dollars and a stamped, self-addressed envelope, do you think he'd mail your results? If you have to give him a dollar to pick it up, he has to copy it anyway....... Just when I thought I had heard every story about greed there was....

Oh Cat, I am so sorry about the position you are in. I may have missed something, as I've been reading thru here so fast. I am no LLMD, but did do a lot of research on the WB when I got mine.

I found no answers regarding figuring out if a positive band could indicate past infection only. My Dr says there is no way to know. However, if you have a reaction on a lyme specific band AND you have symtoms, then you have an active infection.

I do not know as much about 'indeterminate' as others do. But from what I have read from others is that it may just as well be positive, because there was something happening on that band, not strong enough to call positive.

This is an idea that I have and I ask all of you who are Drs or knowledgable about diseases to remark here:

There are many diseases that you can only get once and then you have lifetime immunity, right? In those cases, there are disease specific antibodies still in your body, right?

So would it make sense to say that with diseases that you can catch over and over, there should be NO more antibodies to that disease once you are cured?

Isn't it the presence of antibodies that prevents us from catching, say, the measles, over and over again?

So wouldn't it mean you are positive for Lyme if you have reactions on Lyme specific bands? WEll, I guess you could HAVE Lyme and have the antibodies and then catch lyme again on top of that, can't you? So I dont' know if this theory is correct or not.

Still, Cat, considering you did, for certain, contract Lyme at one time, your tests results will be verrrry interesting and hopefully we can figure out something.

If I've missed this, please forgive me. Have you considered having a CD57 test? This test may not indicate Lyme if you have it, but if your score is low, it indicates that your killer cells against Lyme are low and can indicate Lyme. Many argue that this test also indicates AIDS, but from everything I read about it, a different set of killer cells is tested for AIDS (HIV), not 57.

Some Drs use this test to diagnose Lyme, altho Lyme cannot be ruled out if your CD57 numbers are high or normal.

Comments on Lyme bands, antibodies, etc....

Ok, so it is my understanding that diseases that one gets once and then has lifetime immunity to work as follows: Upon initial exposure, IgM antibodies are created for the particular infectious organism. Then, seroconversion of these IgM antibodes to IgG antibodies occurs, and imparts lifetime immunity because these bacteria/viruses are relatively limited in what proteins they have on their outer surface. When one gets a vaccine for these illness, say Chicken Pox, then the body goes through the same process. Doctors can even measure the amounts (titers) of these antibodies to see if you have retained immunity after receiving a vaccine or having the illness (usually, having the actual illness gives better immunity than getting the vaccine, as the vaccine-triggered antibodies can sometimes disappear slowly over time - this is why, for example, Tetanus shots are needed every 10 years).

With Lyme, it works differently because the bug can dramatically change its outer surface proteins such that antibodies generated to the outer surface proteins of the Lyme bacteria at one point do not protect against new surface proteins and thus we cannot tell whether the antibodies are from current or past exposure...except in the case where multiple Western Blot tests are done in a row from the same lab - changes in which bands show positive are an indication of active, current infection, regardless of whether they are IgM or IgG bands. The caveat? The tests are so inaccurate that we cannot be sure they aren't missing something.

In HIV, they primarily look at CD4 counts. CD4 is a type of Lymphocyte, and Lymphocytes are a type of white blood cell directly involved with killing some kinds of pathogens.

CD57 is a type of Natural Killer Cell, which is another type of Lymphocyte. Most labs only look at CD56 Natural Killer Cells when a Lymphocyte subset panel is ordered, thus the CD57 test is only done upon special request by the doctor who is ordering the test.

My personal opinion on regular MD's telling patients their illness is "all in their head" is that they have no right to diagnose someone with a psychiatric illness since their area of expertise is in illnesses of the physical body and NOT psychiatry. Yes, I agree that persistant (chronic) Lyme will most likely be accepted among mental health professionals long before regular MD's accept the diagnosis, simply by virtue of the bizarre things Lyme can do to a person's psyche that only occurs in ONE other disease that I know of: Tertiary Syphillis (yes, another spirochete, but with far fewer genes and thus much easier to treat if permanent brain damage has not yet occurred).

I totally agree we need Lyme-Literate hospitals! If one wants to make a lot of money, start a LL-hospital - I'm pretty sure it would be busting at the seams with patients once it was open for business. Unfortunately, I don't think the CDC, IDSA, insurance co's or any other nay-sayers would leave it alone and would probably instead try really hard to shut such as place down. But it is nice to dream about such a place, anyway...

Bucci, the test is the Visual Contrast Sensitivity Test.  I personally believe this test is pretty subjective, but this is only because I pass with flying colors despite cognative Lyme symptoms because I happen to be able to remember the patterns from one eye to the other (the test is repeated with each eye).

Cat,  you also might want to look up the low-carb diet for seizures...see http://www.sciencedaily.com/releases/2008/01/080128113325.htm for example...

Take care,