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08/07/2007 07:39
mkor4
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I LIVE IN AUSTRALIA AND HAD A TEST FOR LYMES DISEASE WHICH SAID EQUIVOCAL?WHAT DOES THIS MEAN?

I DONT HAVE A RASH BUT I HAVE STRANGE NEUROLOGICAL AND PSYCHOLOGICAL SYMPTOMS THAT HAVNT RESPONDED TO ANY MEDICATION.i'M THINKING COULD THIS MAYBE BE A FAULT WITH THE TEST BECAUSE I DONT THINK WE HAVE ANY DEER IN AUSTRALIA?PLEASE REPLY URGENTLY.

THANKYOU MARY

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08/08/2007 20:11
RuthH
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mkor4 wrote:TEST FOR LYMES DISEASE WHICH SAID EQUIVOCAL?WHAT DOES THIS MEAN?

Hi Mary, I can tell you that Equivocal basically means "maybe"; that was the result of my first Lyme test. It means there was some bacteria there, not enough to be Positive, but just enough that the test wasn't negative.

You don't have to have deer to get Lyme disease. The ticks are carried by mice, birds, all sorts of wild life. I don't know what types of animals are in Australia, but you can bet you have at least migratory birds & those birds travels hundreds & thousands of miles from who knows where.

If you can find a doctor, a Lyme Literate Medical Doctor (LLMD) is best, but any doctor who will consider Lyme disease & all the symptoms & consider the results of your tests; this is your first step. The results of your test should be considered second to your symptoms; the symptoms are to be used to make the diagnosis & the tests are only used as confirmation of the diagnosis.

I never had a rash either; less than 50% of people ever get a rash of any kind. There are many different sites you can find on the internet concerning symptoms; there are over 150. No one gets all the symptoms, but most get quite a few of the symptoms over a period of time, maybe a year or so.

Do you recall ever having a tick on you? If you do, that's fine, but if you don't, it's not important. If you remember having a tick it helps to pin down when all this first started. I know I had a tick on me in May 2002, I know my first symptoms started about a month to month & a half after that. I can track when it all started & that what I was experiencing fit the patten.

Here is a site where you can start your research:

http://www.wildernetwork.org/faq.html#faqmisdx

50 QUESTIONS AND ANSWERS

If the above site won't work for you, just let me know. I copy & paste all articles I find of interest along with the site address & keep them in my computer for easy access. I have many different articles & will share them with anyone who asks!!

Also, keep in mind, there are many tick borne infections; Lyme is one, but a person can be infected with the Lyme bacteria as well as other tick borne infections.

Treatment is so important to start as soon as possible. The longer the bacteria are allowed to run wild in your body, the harder it is to get rid of the disease.

I hope this helps; Ruth

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08/09/2007 05:31
mkor4
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Thankyou very much Ruth for your very informative answer.

I dont know if I ever got bit by a tick because i dont remember much of my childhood.

What sort of symptoms do you have?

What are other tick-borne infections?

Do they have neurological symptoms etc?

Is the Lyme(antibodies i think?)test specific to only Lyme bacteria or could an equivocal result indicate the presence of other another different bacteria or would that require a different test?

Thankyou Mary

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08/09/2007 13:10
RuthH
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mkor4 wrote:What sort of symptoms do you have? What are other tick-borne infections?

Do they have neurological symptoms etc?

Is the Lyme(antibodies i think?)test specific to only Lyme bacteria or could an equivocal result indicate the presence of other another different bacteria or would that require a different test?

You're very welcome; I'm happy to help!!

Other tick borne infections are bacteria other than the Lyme bacteria (borreliosis) that ticks can carry. Here is a site where you will find the name of each bacteria & the symptoms each bacteria can cause.

These are the "Tick borne Infections" here in the states; I'm not familiar with what, if any, of those are reported in Australia. That's something you could find out from a Veterinarian; they see what diseases animals get & are a great judge as to what diseases are found in your area.

Babesiosis, Bartonella, Ehrlichiosis (HGE and HME),

Rocky Mountain spotted fever, Colorado Tick Fever,

Relapsing Fever, Tularemia, Powassan encephalitis,

Tick Paralysis, Mycoplasma

http://www.canlyme.com/coinf.html

Co-infections complicate the Diagnosis and Treatment of Lyme Disease

Here is another co-infection (tick borne bacteria) site:

http://www.lymeinfo.net/coinfectionarticle.html

COINFECTIONS: A SYNOPSIS

I don't know what test you had, but yes I'd say if you had the Western Blot, ELISA, or similar test, those only look for the Lyme bacteria. There is further testing that will check for specific other tick borne diseases.

I've had many symptoms over the years; I was bitten by a tick in May 2002 & am still being treated (successfully this time I hope). Currently the symptoms I have are blurred vision in my left eye that's worse sometimes, shaking of my right hand when I try to do anything intricate like writing & my head shakes sometimes; it makes me feel like a bobble head doll.

I have from the beginning & still have lesions (white spots) on my brain. The bacteria are breaking down the Mylan Sheath that surrounds the brain. That enables the bacteria to access the nerves surrounding the brain & is the cause of neurological symptoms. The very first symptom I had that brought all this to my attention was blurred vision in my left eye. I was diagnosed by my eye doc with Optic Neuritis (swollen optic nerve). The swelling in the nerve is gone now, he's said so, but the blurred vision still persists.

Also, something that came on slowly & stuck around for a while then has subsided was unexplained weight loss. I hadn't changed how I was eating, getting exercise (very poorly) or anything else, but in about 8 mths I had lost 75 lbs. Lyme disease can also cause unexplained weight gain. The weight loss has been the ONLY good thing about this whole ordeal.

I had gained quite a bit of weight from taking antidepressants for depression not caused by Lyme, this was all previous to Lyme, & I was trying to get the weight off, but wasn't having a lot of success. Then I found out I had an 8lb tumor on my uterus so I had to have a hysterectomy (pre Lyme). That was in 2000, by December 2001 I was finally feeling pretty darn good after the hysterectomy & in May 2002 I was bitten by a tick.

In the past, the symptoms that have come, stayed for about a month, some less & some longer, are:

walking in to walls, disorientation, staggering, dizziness, inability to think of simple everyday words when trying to hold a conversation, lack of concentration, ears ringing (still with me), joint & muscle pain (finally gone w/treatment), neck cracking when I turned my head, jaw pain, insomnia (have to take sleeping pill if I want to sleep), unexplained chills & sweats (has nothing to do with hysterectomy), tired all the time no matter how much sleep I get (still with me), anxiety attacks, numbness in hands & lower legs (still with me), irritable bowel syndrome, itching/burning feeling in legs (would scratch till I had awful bruises). I'm sure there are some I've missed, but these are some I can remember with the help of a symptoms list.

There could also be other symptoms, but because I have 2 herniated discs I don't know if a pain is Lyme or if it has to do with the discs. Also, my gallbladder was removed years ago, so I don't know if some stomach problems have to do with having no gallbladder or having Lyme.

This is a strange disease; it looks like many other diseases. However; you won't have tests that show bacteria for those other diseases, Lyme is the reason you have bacteria showing up in your blood tests.

I hope I've helped answer your questions; I apologize for this being so long, but I tend to get wordy when talking about the disease. Ruth

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08/10/2007 10:55
mkor4
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Thanks Ruth

Do you know if Lymes disease can still cause neurological symptoms without there being demylination?My brain MRI said there was no demylination.My PET scan said hypometabolism over both temporal lobes.I have severe unusual headaches/headpressure,pins and needles,tingling,ringing in ears,pulsating,muscle tremors,chills,sweats,confusion,disorientation,strange spontaneous crying or rage etc

Thankyou Mary

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08/10/2007 10:56
mkor4
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Thanks Ruth

Do you know if Lymes disease can still cause neurological symptoms without there being demylination?My brain MRI said there was no demylination.My PET scan said hypometabolism over both temporal lobes.I have severe unusual headaches/headpressure,pins and needles,tingling,ringing in ears,pulsating,muscle tremors,chills,sweats,confusion,disorientation,strange spontaneous crying or rage etc

Thankyou Mary

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08/10/2007 22:55
RuthH
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Well that just makes sense & I didn't stop to think before I typed what I did. I know full well there are folks who don't have anything show up on their MRI's; like I said, I just wasn't thinking.

When you mentioned chills, boy did I have those. In the middle of August, I was wearing sweats & a sweat shirt & shaking with chills to the point my husband brought an afghan over to put on me. I'm so glad that went away; it made me nuts!! The sweats, I still have, but thankfully they're no where near what they were. I still have them, but usually they just hit for a few minutes then go away.

The tremors I had in my stomach were crazy. I'd lay down to sleep & my stomach would start; it would wake me up sometimes. Thankfully that went away in a few weeks. I just finished with tremors in my chin; now you talk about strange!! I finally have noticed in the last week it's not happening any longer. I'd lay down to sleep & my chin would start & I couldn't sleep until it stopped. What I had to do, figured out, that if I used my upper front teeth to hold my lower lip then my chin wouldn't quiver. Man am I glad that's gone. This is the oddest disease!

The ringing in my ears I've had for years. I'm not sure why, but I tend to think, when I went on antidepressants that was the cause. I can't remember for sure, but I think that's when it all started. I've been off the meds for 8 years or more & the ringing is there, but I've gotten so used to it I don't even notice it.

I've started new abx today & have had stomach upset big time; diarrhea. We're leaving Saturday for vacation, so I'm not going to take any abx until Sunday. At least we won't have to constantly stop so I can go to the bathroom. UGH--It makes a person miserable, but I think, hope & pray, this is near the end of treatment for me. Other than a couple of symptoms, I'm doing well. I wish I had more energy, but that will come in time; I plan on taking some B-12 to help once I'm done.

The LLMD whose regime I'm following says no vitamins or minerals. That is something some docs following with the feeling the bacteria feed on the vitamins & minerals. I don't mind, I'm really bad about taking vitamins anyway; well at least pre-Lyme. I'm going to be a lot more aware of what my body needs once I'm finished with all this. I think it will be another 6 to 10 mths; after that I may be done. I'm not sure of the time of treatment. It's helping, so I'm willing to go the distance.

I won't be back here until the 18th or 19th, going to the beach , so I hope all goes well for you!! Take care, Ruth

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08/10/2007 23:49
mkor4
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Dear Ruth

Thankyou very much.I hope the treatment works for you and hope you have a good holiday.

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08/19/2007 20:38
RuthH
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Well I'm/we're back from vacation, but it wasn't at all good!!! Within 24hours of our arriving we were hit by a drunk driver & had it not been for my husband's driving skills, I wouldn't be here at all; none of us would be. The driver was 3 times over the legal limit, blamed him for the accident, but a driver behind us who was almost hit too told the State Trooper what he saw & it all went with what we all saw.

Needless to say, the woman was handcuffed right there at the scene & taken away to jail. Our 2 year old car is a total loss; she hit us so hard it broke both axles, all the air bags went off, the windshield was smashed, everything was a huge mess. They would have had more cost in replacement parts than what the car cost new. We had a Honda CRV & I have to say, even though it's a foreign made vehicle, all those safety features sure paid off!

The only good thing to report is, although we are all banged up & I might have to do some physical therapy for a short time, we all (4 of us)walked away from the wreck.

Also, whether it's the drugs or the beach weather, the tremors I had in my right hand are subsiding quickly. I've heard this from other folks who've gone to the beach & the combination of sun & sea air have brought positive change for them as well.

I sure am happy to be back here to talk with my new found friends!!! Ruth in WV

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08/21/2007 09:25
erleichda
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Oh Ruth, that's horrible. I am so sorry, but so relieved that all four of you were able to walk away from that.

I'm glad that you are going to get checked out, go to physical therapy. Sometimes, you don't know that you're hurt until much later.

I'm glad that you still have the benefits of your vacation, despite the collision. And thank goodness that the other driver stopped to verify your story to the trooper.

Welcome back Ruth!!! We're so happy that you are still with us!

Lori

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