# I may have an answer for some of you-please read



## jocus20

Hey guys, im new to this forum. I was just searchin the web for brain fog or DP/DR forums as it is something ive been dealing with for over 2 years. However i am not really here looking for answers but instaed to possibly provide some for you. I was reading over some of the posts here and from what i read many of you here have not really found an answer to your DP/Dr problems. Its a terrible thing to have to deal with. I ,like most of you, probably went through numerous doctors, tests, and procedures to find the route of my problems, only to find out that all my tests and mris etc. were normal. However i knew there was somthing wrong. There is no way a healthy human being should feel like this. I was in my final year at college was healthy and active and didnt use any drugs whatsoever and life was great. After almost a year of trying to figure out what was wrong with me i had my sister tell me about a person she knew from work who had the same kind of symptoms as me and she had lyme disease. I thought well i had several lyme tests and they were all normal and all the doctors assured me that i didnt have lyme disease. Well after doing extensive research i saw that lyme tests are very innacurate and may only be 30-40% correct. Also, less than 50 % of the people wil get a classic bullseye rash or even remember being bitten by a tick. I then began trying to find more about lyme and how it is really supposed to be a clinical diagnosis once all other problems are ruled out. However most General Practitions do not beleive in lyme and think it is a difficult to get/easy to diagnose and treat disease. This could not be any further from the truth. In order to get proper testing and treatment people that suspect lyme disease have to see what are called lyme literate medical doctors. These doctors are normally just regular Medical doctors that study, research, diagnose and treat patients who were given the cold shoulder from most doctors or written off as being "depressed". In fact lyme disease is the second fastest growing infectious disease in America and that is only counting the people that test positive by CDC standard on tests that are less than 50 % accurate. There is extensive research being done that most of you will never hear about by your general practioners. The research that is being done and actually proven in most cases is that lyme could be the number 1 factor in diseases such as Chronic Fatigue, MS, ALS, Fibro, Parkinsons etc. You are probably thinking how could this be? Lyme is known as the "great imitateor" for its ability to mimick diseases previously mentioned and many more. In fact no two patients with lyme will have exactly the same symptoms. In people with neurological lyme, Dp/Dr or brain fog is a common symptom. Many people with neuro lyme will not get the classic lyme symptoms such as joint pain or it will eventually appear as a later symptom. Lyme disease can cause a host of symptoms. Here is a common symptom sheet but does not include all lyme symptoms as there are hundreds of them.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change (loss or gain ? circle one)
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands: list areas _______________________________________________
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production; breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach or abdominal pain
Change in bowel function (constipation, diarrhea)
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling: list joints _________________________________________________
Stiffness of the joints or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creaks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Increased motion sickness, vertigo, poor balance
Lightheadedness, wooziness, unavoidable need to sit or lie down
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory, poor attention, problem absorbing new information
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing; word or name block
Mood swings, irritability, depression
Disturbed sleep ? too much, too little, fractionated, early awakening
Exaggerated symptoms or worse hangover from alcohol

Many people have any combination of these symptoms and most likely not all of them.

As i said before lyme disease is a clinicla diagnosis. Even if you test negative it is possible to have lyme. There are other tests that can be performed such as a Brain Spect Scan to either rule in or out lyme. A brain Spect Scan is different from and MRI as it shows blood flow and oxegyn. People with lyme will often have what are called hyperfusion defects which are areas in the brain which blood does not get to. Sort of like swiss cheese. This tests is good in telling whether or not your symptoms are psychosematic or cuased by lyme. Also, there are 2 laboratories in the US which are more reliable lyme tests. One is IGENEX and the othe one is called BOWEN laboratories.

Besides lyme, ticks can transmit other co-infections which many people with lyme disease have. These co-infections are Babesia, Bartonella, Mycoplasma, Echliroisis, and Rocky Mountain Spotted Fever. The symptoms for each of these vary.

More info can be found at http://www.ilads.org

and http://www.ilads.org/burrascano_1102.htm

these are diagnostic hints and guidelines by one of the best lyme literate doctors and many other lyme literate doctors follow his protocols.

I am not here to stir up any controversy or try and diagnose any of you. I am simply a person who is all too familiar with DP/DR and am wanting to possibly help some of you with looking for a possible answer to your symptoms. It took me almost a year to get diagnosed and ive been making progress ever since. However i do still have the daily "fog" vison problems and fatigue, alot of my other symptoms have dissapeared and im still doing treatment in hopes to fully recover from this disease.

So for those of you who have any suspicion about lyme due to your symptoms or exposure to ticks, than finding a lyme literate doctor may be a good idea. Finding more info on lyme and finding referrals for lyme literate doctors can be found at http://www.lymediseaseassociation.org/
Also, i can try and help you as best as possible to find one. Please respond with any questions comments etc. Im am just here to try and help. take care

P.S. sorry for the really long post.

Joe


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## PPPP

:? uhm.... 
So did you ever get a positive diagnosis of lyme for yourself or do you just think that you have it?
sorry if you already answered that. Your post was long so I might have missed it.

I've done my fair share of riding horses through the woods etc.. but I'm 100% certain I don't have lyme. 
It's interesting though. So many things can cause DP/DR.


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## jocus20

I did get a positive test through bowen labs n florida. also i mentioned above that a Brain spect scan is a good diagnostic tool for determining that your symptoms are due to lyme and are not psychosematic. This post is meant for people that have more symptoms than just DP/Dr. people that have things like stiff neck, headaches, vision problems, fatigue, tingling or numbness in extremites ect. along with dp/dr may want to get checked for lyme as it is likely they could have it. You also dont necesarily need to see a tick or rash to have lyme. many people contract lyme and dont ever remebre being bitten by a tick. Hope any of that helps.

Joe


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## FloatingRoberto

Your intentions are good, but introducing an "undiagnosable" "untreatable" controversial illness on a forum loaded with hypochrondriacs might be unwise. 

Take me for example, having slow but steady progress with a healthy lifestyle and a shrink. But I have had an infected tickbite, and 80% of the symptoms, like infections, artritis and all the neurological/psycho stuff...
This might be cuz the evil tick got me, or just because both stress and the disease induce the same cluster of symptoms.
This is a rather common complex; you get exactly the same symptoms with for example CFS and more probably Somatization disorder.

So yeah. make sure a physician screens you, but don't try to "feed" him an illness... it might work.


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## jocus20

who eversaid anything about undiagnoseable or untreatable? You must have misread my post or i was unclear. I was simply stating that most doctors beleive that is a hard to get/easy to diagnose disease and thats why many of them write off lyme as a possibilty. Lyme disease is neither undiagnosable or untreatable. I was saying that in order to geta proper diagnosis and proper treatment that you would have to see a lyme literate doctor. people with lyme do get better. I am not trying to start a controversy at all. I was actually reluctant about posting this thread becuase many people might take it the wrong way. I am trying to help some people on this forum who actually might have lyme disease and to find a way out of living wit DP/DR. If you read my post clearly you would see that. I was also trying to clarify that many people who get diagnosed with diseases such as CFS do actaully have lyme. Please do not think that think i am trying to diagnose any of you. Lyme disease is not a death sentece nor something to get friightened over. If indeed any of you did have lyme wouldnt you want to know so that you dont have to live with dp/dr or anny of your other symptoms anymore? It can be cureable with proper antibiotic treatment. I hope that clears some things up. Let me know if there is anthing else you are unclearabout or want more info about. Take Care.

Joe


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## FloatingRoberto

Yeah, I got questions. 

Does lyme cure itself without anti-biotics?
Are anti-b's very effective or do you still have a long recovery-traject?
Is a Brain Spect Scan a reliable method? 
Do lyme-symptoms also get worse with stress, sleepdeprevation & exertion?
Where did you turn for your thorough checkup? ( academical hospital, neurologist, internist or shrink??? )

Blegh, this is just what I feared, you got me worried. :twisted:


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## jocus20

I am sorry to make you worried. Those are not my inetentions whatsover. If you do suspect lyme disease, it is nothing to be worried about. Alot of people have these misconceptions about lyme disease. Although it can be dabilitating for some, you can definately get better. As for your questions, No lyme will not leave the body without some form of treatment. Many people use antibiotic therapy to erradicate the lyme however there are alternatives as well. Lyme symptoms wax and wane, and stress and exertion can worsen symptoms. As i stated before, in order to be properly tested for lyme you would need to see a lyme literate doctor. These doctors are different from regular MD's becuase they know how to properly test diagnose and treat patients. Many regular MD's follow outdated protocols for diagnosis and treatment. Brain Spect scans are a good aid in diagnosis becuase of the unreliable of standard lyme tests. It is also a good measure to tell that your symptoms are not psychosematic. Again I am not trying to scare any of you. I am simply trying to provide some of you with a possible answer. Wouldnt you want to know if there was a way to get better? I know i was thrilled when i found out i had lyme becuase i had suffered for so long with no answer to what was causing my problems. I am in no way saying any of you have lyme disease but it might be an option to explore if you suspect it. Hope any of that helps


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## Dreamland

The great imitator? I though syphilis and tuberuclosis were the great imitators. Moreover, if your symptoms are primarily DP without the myriad of physical symptoms then I doubt that lyme disease is the cause. Here's another test for all you hypochondriacs out ther in DP land: If your symptoms are terrible in the morning but decrease throught the day, making you feel better at nigh,t then the likelyhood of it being something organic/pathalogical is highly unlikely. On the other hand, a disease that is organic in nature usually makes you feel worse througout the day, since your body has difficulty dealing with the increase in activityand stress as the day progresses.


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## jocus20

Dreamland, Lyme disease is the new "great imitator". Sorry i should have clarified that. However, i do agree with you. If your syptoms are DP/DR alone then i doubt you have lyme disease. Lyme causes a number of symtoms that can include DR/DP. Anyways, im not saying that all people with DP/DR have to be concerned with lyme, but for the people that have an extensive list of symptoms including Dp/DR, it may be something to look into.

One, Your syptoms sound like they could be related to lyme disease. If you do have a concern about it than it may not hurt to get proper testing. If you post where you are located i can try and help you find a lyme literate medical doctor. Let me know


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## Dreamland

Jocus20, just to show you how much "all in your head" this condition can be; I ran 5 miles last night and started to feel really good after mile three but I decided to keep it short. However, this afternoon my back began to hurt like a mother*** and it traversed all the way from my lower back slowly up to my neck, and my DP began to feel intense--brain fog and everything. I thought I was coming down with meningitis or something for sure. I was flat on my back on the couch up until 2 hours ago and forced myself to run again, but I was afraid that someone was going to find me on the side of the road passed out going into convulsions. Needles to say, I feel like superman right now and want to run another 10 miles.....all my aches and pains are gone and I feel very lucid and sharp. It was all "in my head", as real as it felt. If I had lyme or meningitis, MS, I don't think I would be running 6.5 minute miles.


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## Martinelv

To cut a long story short - DR/DP can be triggered by all manner of ailments. Most GP's, competant ones, will perform a blood test on you when you complain of DR/DP symptoms. It's one of the first diagnostic test they do, before they start looking at psychological issues. I had a friend who suffered extreme anxiety, went to the doctor, had a blood test, found out that his thyroid gland was highly overactive, took some thyroxine, and was fine.


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## Guest

Martinelv said:


> To cut a long story short - DR/DP can be triggered by all manner of ailments. Most GP's, competant ones, will perform a blood test on you when you complain of DR/DP symptoms. *It's one of the first diagnostic test they do, before they start looking at psychological issues.* I had a friend who suffered extreme anxiety, went to the doctor, had a blood test, found out that his thyroid gland was highly overactive, took some thyroxine, and was fine.


Ermm.. .guess my GP is a little be hide? ... Well I say "GP" but I mean GP"S" (GP= Doc)... they have all assumed it's psychological, and I was the one whom asked for a thyroid gland test (Which came back normal)... I'll chill for now till I know my EEG Results.


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## jocus20

If this post doesnt pertain to you than there is no reason to reply. Im sure it is true that their are other things that can cause DP/DR. That is not what i am here to debate. I am simply here to provide some with another option or avenue to persue. This post was meant for those of you who have a host of symptoms including dp/dr and were told by doctors "i dont know what is wrong with you" or Your "depressed" while you continue to get worse. If any of you have those odd symptoms and wish to beleive that samehow you can create joint pain, tingling/numbness, vision problems etc in your head, be my guest. If you choose to possibly find relief by other means than antidpressants and other prescription drugs, finding a lyme literate doctor to be evealuated and properely tested, than i am here to help.


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## medo

OK I WAS ABOUT TO POST A TOPIC/QUESTION ABOUT HOW I FEEL PRETTY GOOD WHILE ON ANTIBIOTICS WHEN I CAME ACCROSS THIS THREAD.

I'VE BEEN ON ANTIBIOTICS ON AND OFF SINCE MY NOSE SURGERY ON DEC 04 2006 DUE TO RECCURENT INFECTIONS.

I WAS ASKING MY SELF "WHY I FEEL BETTER MENTALLY WHILE TAKING THESE MEDS"?. NOT ONLY FEEL SOMEWHAT BETTER BUT 80% BETTER DP WISE. I ALSO HAVE MANY OF THOSE LYME DISEASE SYMPTOMS SUCH AS TESTICULAR PAIN FOR WHICH I FOUND NO CAUSE YET.

BUT FROM WHAT I KNOW ABOUT THIS LYME DISEASE, YOU ONLY GET IT IF U GET BIT BY A DEER THIC. THAT NEVER HAPPENED TO ME. IF THERE ARE OTHER CAUSES I SURE HOPE I HAVE THAT DISEASE.

ANYWAY IM GONNA LOOK INTO THIS.

THANX JOCUS


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## medo

OOPS. COMPUTER ERROR.

I DID SOME RESEARCH ON THOSE "TICKS" AND I KNOW I WAS BITTEN BY THEM WHEN I WAS A KID.

IS THERE A DOCTOR THAT SPECIALIZES IN THIS TYPE OF DIAGNOSIS?


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## jocus20

Hi Medo,

Deer Ticks are not the only type of insect that carries lyme. there are a few other ticks as well, one of which is called the lone star tick. It is also beleived that it can be carried by some mosquitos and spiders. However it is possible you could have been bitten by a deer tick and not know it. About half the people with lyme dont ever recall being bitten. You mentioning that you have felt better while on antibiotics leads me to beleive it is lyme. Also, recurring infections is a good indicator as well. In order to get proper testing for lyme you would need to see a lyme lieterate medical doctor. If you post where you are located i can try and help you find one in your area or lead to other websites that can help. It is something i would highly suggest looking into


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## medo

medo said:


> OOPS. COMPUTER ERROR.
> 
> I DID SOME RESEARCH ON THOSE "TICKS" AND I KNOW I WAS BITTEN BY THEM WHEN I WAS A KID.
> 
> IS THERE A DOCTOR THAT SPECIALIZES IN THIS TYPE OF DIAGNOSIS?


Hi Jacus,

I sent you a pm.


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## kcs

I'm glad to have found this thread, it's been 3 years since I have been to this forum, and I had pretty much given up on a diagnosis, but recently started reading up on Lyme and thought I would drop in here to see if anyone is looking down the same road I am - looks like I am not the only one suspecting (or already diagnosed with) Lyme. I have an appointment scheduled with a LLMD on August 10th, so will get tested then, and I can tell you, the 10th can't come soon enough! The reason I am suspecting Lyme is that I do have a large cluster of weird symptoms aside from the DR, mostly cognitive stuff, but also some physical like joint pains and bladder pain and foot pain amongst others, all of which are listed as Lyme symptoms. I found an excellent article about cognitive impairments in Lyme disease, and there are some very specific issues that match what I have been experiencing for years. Here's the article for anyone who is interested - http://www.johndrullelymefund.org/lyme_ ... _impai.htm
Anyhow, I will update again after my appointment, wondering if there are others that are considering getting tested for this as well. Jocus, you have some very good information here, which is totally meshing with everything else I have read on the subject so far.
-karen


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## kcs

Update - just got my test results back and the Western Blot was positive for lyme - positive even by CDC standards, wow. My follow up appointment with the doc is in two weeks, so we'll see where we go from here. Damn, if this has been undiagnosed lyme for the past 15 years, well, I don't even know what to think about that.
-karen


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## Guest

Thanks for making us aware Karen; let's hope the treatment/s settle you back into reality with haste. I've had this DR/DP for as long as I can remember (I'm 23)... and I might have it longer due to the docs not being interested in given me the tests I need to make sure I don't have DR/DP due to a disease... any how... you could have gone another 15 years with DR/DP... so be thankful you have finality found your answer, you might not take life for granted like so many others do because of a fresh start.


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## Surfingisfun001

I just came across this thread. This is pretty interesting. I was in eastern Europe a while back and got bit by some kind of tick/bug and got a huge swollen infectious bite on my arm. It was freaking huge and I have a scar from it. My mom warned me about diseases being transmitted from bites like that. This was about a year and a half before my DP started though. I think I'm going to research this topic more.


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## Guest

I highly reccomand you do mate.


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## kcs

http://www.lymediseaseaction.org.uk/leaflets/lda002.htm



> *Where in Europe do the ticks that carry this disease occur?*
> 
> According to surveys, many parts of mainland Europe have large areas where the ticks that carry these diseases occur. Human infection rates for the described species tend to reflect the geographical distribution of these ticks. Mainland Europe, especially Eastern Europe, appears to have a greater number of cases than the British Isles. However, recent publications about ticks, their ecology and distribution, indicate that scientific knowledge is still likely to be incomplete in the latter area.


-karen


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## Surfingisfun001

wowwwww that's crazy. here is what it looked like....still not exactly sure what kind of insect it was from


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## kcs

Eeew, nasty! I would definitely follow up on this though if I were you.
-karen


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## Guest

Yeah i'm with karen on this one *nods*.


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## Surfingisfun001

What do you recommend I do? PS: I saw that you logged out of the chat room just as I logged on, bummer!


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## kcs

You need to get tested by a LLMD (lyme literate medical doctor), testing should be done through Igenex which is the best lab for tick-borne diseases. I see you are in Los Angeles - there is a California based lyme group that is a good place for information - http://groups.yahoo.com/group/CaliforniaLyme/, if you ask for a doctor rec on there, someone should be able to help you. Just be aware not to post doctor names on the group, only in private e-mails, it is a rule there.
-karen


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## Surfingisfun001

Thanks for the info. It was nice talking to you today.


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## Surfingisfun001

Found an infectious disease doctor who tests and treats lyme. Going to see him Thursday.


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## Guest

Good to hear it surfingisfun; good luck with it.


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## kcs

http://en.wikipedia.org/wiki/Lyme_disease_controversy

I would urge you to join that CaliforniaLyme group and ask for a referral to a LLMD on there - of the people on that group and others that I belong to, so many of them have had universally bad experiences with infectious disease docs - almost all of the ID docs subscribe to the IDSA guidelines, which means that even if they are willing to test you (many of them won't even go that far), they won't use Igenex, which is the best lab available for lyme testing (see above link again). Then even if you are lucky enough to get a positive on one of the less-accurate tests, they will treat you for 3 weeks and send you on your way, which is not even close to being enough. Any symptoms beyond 3 weeks they will chalk up to post lyme syndrome, and they will refuse to help you anymore. There are docs that go by IDSA guidelines, and docs that go by ILADS guidelines - you need the latter, please trust me on this, and do some reading up on it to fully understand why.

You owe it to yourself to do your own research on this, and please consider finding a lyme literate doctor instead of an ID doc - it could be a crucial difference. Feel free to PM me if you want to talk more, ok?
-karen


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## Surfingisfun001

I will forsure take your advice on that, don't want to waste more time. Here is the page for the book I am reading....

anyone relate to this? 

...................................................................................................

There were also days when I could make it out of bed and to the kitchen to make coffee but my brain - owing to the neurological assault that distinguishes Lyme - would forget how to make coffee and I would stand with the pot in one hand and the tap running, not sure of what to do next, or I would remember and start making coffee, but owing to the effect the disease had on my vision, I would suddenly find myself unable to see the coffeepot, the running water, the floor I stood upon, and would have to grope around and go slow or risk pouring water into another toaster. That year, I was hell on appliances.
During this time I kept a notebook beside my computer that contained some simple instructions.

1. To turn on computer, push the smaller of the two round buttons.

2. You have DSL. If the computer is already on, you are already connected to the Net; if not, go to the folder under the Apple menu and click CONNECT.

3. Wear socks - there's a chill in the room.

4. Socks are those long cloth things with a hole in one end and no hole at the other. They're in the second drawer from the top, in the dresser, in the bedroom.

5. Remember to feed the dog;remember the dog is that furry thing that sits near your feet.

6. Remember that you've forgotten how to spell and, for the most part, your grammar now sucks.

7. Remember that you've most likely forgotten that you've forgotten how to write as well, so the difficulty you've been having is perfectly normal and preferably should not result in violence, again,

8. Try not to panic, complain, or daydream.

9. Keep passing the open windows.

...The reason for passing the open windows was to keep from eventually jumping out of one.


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## kcs

Haha, this is my favorite -

6. Remember that you've forgotten how to spell and, for the most part, your grammar now sucks.

I used to be an excellent speller, now sometimes I think of a word, and it just doesn't sound right, like I made it up. I didn't it is the right word, it just sounds so weird and not right all of a sudden.

Lyme Brain.
-k


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## Surfingisfun001

I know what you mean. Sometimes I will think of a word for example "nurse" and think and think and totally not remember what it means.


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## Surfingisfun001

Oh boy, I have my first meeting with Dr. H this Thursday. I am really exited. I didn't think I would be able to get in this fast 8)


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## kcs

That is awesome news!! Give us an update after the appointment, ok?

-karen


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## Guest

Excellent to hear mate, hope it goes well =).


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## Surfingisfun001

Thanks guys, I will let you know how it goes.


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