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cindys601 09-11-2007 06:45 PM

Positive Lyme Test
Hi~ I have been struggling with symptoms consistant with Lyme, ms amongst others. Tingling in body, burning pain, weakness in legs and my list goes on. I went to my PC and he ran a battery of tests to rule out vitamin deficiencies, lyme, arthritis plus much more. He said if these test all come out negative, the next step would be a neuro.

The results all came back with no findings. So off to the neuro I went today.

Sitting in his office, he read my lab results from my pc and said, "you tested positive for lyme" I argued that my dr said all was negative. He circled the positive result and said that this sets off a red flag and we need to do another test. Maybe I don't and maybe I do have lyme.

He also suggested a toxin in my body, possibly a heavy metal suuch as mercury. I am not a fish eater but he fealt this should be ruled out as well. (I joked to hubby that I hope he's not poisoning me cuz I'm definately worth more alive!! LOL)

More blood work was ordered and a nerve test as well.

When i got home, I emediately called my pc to question these results. He said they got a positive, which is very common, so another test was done for a western block? and that came out negative so I definately don't have Lyme.

Also today, the neuro said my blood pressure and pulse rate was a much bigger concern to him. I have been having this for a year, had all the heart and stress test and not a problem there. They did dx me with sleep apnea but he doesn't believe this would cause the elevation.

My 2 questions are, what do I need to be aware of as far asmy positive lyme and should this raise concern, because I have 2 drs with 2 different outlooks?

Also, does elevated blood pressure and pulse rate happen with Lyme?

Sorry this is so long but I apreciate any input anyone is willing to offer!!


ticker 09-11-2007 06:55 PM

Re: Positive Lyme Test
Hi Cindy, welcome to th board!

How long have you been sick? Do you have copies of your tests? Which lab did it? I recommend getting copies of your tests.

It sounds like you had a positive ELISA or titer. This is the test most doctors run first. Then if it is positive they do a Western Blot. No Lyme test is completely reliable, and results can vary by lab.

On the Western Blot, the CDC requires several bands for the test to be poisitive, yet many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are positive. Some are specific for Lyme. If you want help interpreting your results, post them here.

You have a positive test and you have symptoms. You need to be treated. Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
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
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
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous aggressive treatment.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Have you been tested for these?

There is only one Lyme doctor in MA, and I do not recommend him. The closest knowledgeable doctor I know of who comes highly recommended is Dr. Steven Phillips in Wilton, CT.

It his also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available, and you are not alone.

cindys601 09-11-2007 07:30 PM

Re: Positive Lyme Test
Hi Ticker~ My symptoms began 13 years ago with tingling sensations in my arms and legs. I had a very traumatic life changing event accur and my doctor concluded that the adrenaline in my body was causing this. He prescribed an anti depressant but my symptoms would come and go. I never revisited these symptoms with my doctor, believing stress was still there (don't we all have stress in our lives? LOL) until this July because My syptoms have made it difficult to function in my everyday life.

I was always an energetic person and this year I can barely find the strength or energy to take my daily shower!! I work 7 days a week, taking care of 23 mentally disabled veterans and this does deplete my energy so I let myself go to care for them.

I do have many symtoms. And going back to the beginning, I was producing breast milk and the dr said this could be caused from the anti depressant.

My test was done in a local lab which i know is not recomended. I have heard of the home tests. Can these work with better results?

A member on your board posted about the LLMD in ma and it was a new experience and were unsure of the doctors ability. Conn. is just so far!!

Being these symptoms have been there for so long, is it typical to have a complete recent body collapse? And, what would be the successfullness of treatment after so long?

My opologies for so many questions but as you know, knowledge is our greatest tool in a dx. Thanks so much for your help!!~ Cindy

roro 09-11-2007 07:46 PM

Re: Positive Lyme Test
I would suggest you see a Lyme literate MD. the regular doctors and specialists wont treat unless you have a positive elisa and then a western blot with 5 or so bands specific for lyme. and even then they only treat with 100 mg doxy twice a day for 4 weeks. this is not enough, especially for late stage lyme.
I have had lyme since at least 95, maybe longer, and may have been reinfected in 2002, was hospitalized with heart failure and carditis in 2004 and this past year have been too sick to function (it was a struggle to just take a shower) I had to go on disability for over a month. i went back to work anyway, and even got sicker. I am now seeing a LLMD and he treats based on symptoms. the tests are so unreliable, that is why its so imoortant to see a LLMD, he knew exactly what symptoms went with what coinfections, thinks I also have bartonella, babesia and other tick diseases. I am on three strong antibiotics. after 3 weeks I am finally feeling a little better.

J0J0 09-11-2007 08:08 PM

Re: Positive Lyme Test
[COLOR="Purple"][B]Hi Cindy...isn't it fun going to doctor to doctor and having different dx every time you go. There is no wonder family and friends think were all nuts! lol...

I hope you realize that "if" this is Lyme. Which is sounds like you have a positive there. and the symptoms. That even though you have been some what functioning the last 13 years ..It can turn far worse at any moment. Lyme is a relative to syhpllis. There are many of us have had their brain damaged, in wheelcharis, walkers, bed ridden.ect ect..

There are many of us who have gone eons of years like yourself without the proper treatment. It would be of major help to you if you got yourself even if it is a ways to go to a Lyme Literate Medical Doctor. WE may not get cured. But being "Better" is far more enjoyable than bieng in constant pain, mind confusion, and all the other things that go along with no treatment.

These doctors don't know how to treat Lyme nor do they even want to try. they can lose their license if they give out antibiotics over a month. They don't wnat the hassle of it. But instead they can legally hook you on pain med's, anti-depressants, and send you from specailist to specialist...I mean how easy is it to make money off of us. See you for 10 min and give you a prescruption for more mind altering drugs...Pretty crazy if you ask me.

I hope you get to a doctor that will help you and not confuse matters more.

Good luck...let us know how you are doing!

:D [/B][/COLOR]

cindys601 09-11-2007 08:22 PM

Re: Positive Lyme Test
Thanks so much for all your words of encouragement!!

I have been talking to my hubby as I've read your answers and he agrees I should go the distance.

Today I traveled 2 hours into the city for a neuro by appointment and on the way home I got comeplety lost and drove from highway to highway in circles, getting panicked, until I found my way home. I generally have a great since of direction and this was so scary!! Hubby called me several times concerned I wasn't home yet. So my fear of a long trip is definately justified these days.

My neoro suggested checking for syphalis today(Sorry for the spelling). You just explained why!!

KeyLyme 09-12-2007 05:56 AM

Re: Positive Lyme Test
I'm so sorry that you're going through this. I know how scary it is to get lost in familiar places. I can't count how many times I've become lost on familiar roads.

Definitely check out the LLMD. Let us know how it goes.

ticker 09-12-2007 06:09 PM

Re: Positive Lyme Test
Hi Cindy. It is scary to have this happen, but realize it is the disease not you. With proper treatment, this should get better.

I hope you can see a Lyme doctor soon.

cindys601 09-12-2007 06:22 PM

Re: Positive Lyme Test
It is a CRAZY feeling to get in a place like that. And its even more crazy that a thing called Lyme can do that.

For years my family has developed a name for when I mix up my words too. I'll say the word comepletely wrong(knowing the correct way of saying it) It just comes out wrong. They laugh and say "just another Cynthiaism" hense the name cindy. It was never thought of a concern, just someting to laugh at.

Just curious, what causes this major jumble of confusion in the brain?

J0J0 09-12-2007 06:29 PM

Re: Positive Lyme Test
[COLOR="Purple"]Cindy I went through exactly what you are going through. As many on here do or have also. The bacteria (s) virus;s don't stay in just one spot...they get into our brain and every little inch of us. With "proper" treatment this went away for me also.



cindys601 09-19-2007 03:16 PM

Re: Positive Lyme Test
The neurologist called me back because he realized that though my initial lyme was positive, the second test was negative. He asked me to come in today because he made an error and believed I was positive but needs to look further at my sx.

This visit was even more frustrating!! He asked me what my syptoms were that were troublesome and I said the tingling, electricity sensations in my body, the fatigue and my lack of ability to keep up in my daily activities. I was a very active, energenic person and this has just knocked me down so I just get through my work day (and I just barely do that).

He said that my symptoms don't seem neurological to him. I disagree. Isn't all the tingling and burning I feel coming from my nerves? Maybe thats a silly thought but...

The next thing he asked is how I fealt about sitting back and just seeing where this all goes for a while. I told him I was absolutely not willing to do that. I have sat back for over a decade and look where it got me!! I also told him that I have a very long history with my GP and his advice is not to give up until I find an answer. That my dr believes there is a problem and knows I'm not a person who seeks medical advice until its unbareable. I fealt he was dismissing my sx because he was perplexed. I still don't understand why he hasn't ordered an MRI to rule out other things?

He has ordered a nerve conduction test for october 4th and decided he would put me on tetracycline for 10 days to "see what happens". (250 mg 4X daily) I will be off them for about 5 days before I see him again and he's wanting to find out if my symptoms will improve, then return when I stop them. I think he feels as though this will be an indication of the lyme dx. Any input on that?

I haven't given up on all your advice about a LLMD but I have a home for mentally ill men and it's only me to care for them. I can only go to the DR when my hubby has a day off from his job which is 1 day a week, so that he can care for the men. So this definately is slowing down the process.

Also, I had asked him about ordering a Lyme test kit and having him use this because it's more accurate. He shot that down, saying people can sell you anything, and rolled his eyes!!

So I guess its sit and wait...

Thanks for letting me vent!!


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