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» LymeNet Flash » Questions and Discussion » Medical Questions » need advice please!!

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Author Topic: need advice please!!
skateboarddaily
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hello, 20 year old male.. so long story short back in 2009 I suddenly became VERY lighthraded at school out of nowhere and I went home sick that day stuggling to walk feeling like I was going to faint.

From then on it was a constant feeling, I went to all the doctors got all the blood tests done, cardiology tests EKG, monitor, tilt table and everything. Got a CT scan, went to and ear nose and throat specialist and NOTHING.

I had this constant lightheadedness for about 2 months before it dimmed down enough to where I could drag myself back to school but still felt the slight lightheadedness, much worse when in the auditorium for plays, sometimes driving, and during my HS graduation... but it would slowly get better after the events.

Then suddenly here in 2014 while at work it suddenly hit my full blast again with constant 24/7 lightheadedness, heavy heartbeat, some trouble focusing at tomes, and I've now been out of work for 2 months,

had and MRI the other day that came back clear with apparent slight matter near the frontal lobe but I was told it was nothing to worry about and could be migrane related.. or is it Lyme related?...

and I am taking clonazepam now because it's beginging to give me anxiety, and helps a tiny bit but I and still lightheaded 24/7! I never had anxiety before I felt this lightheadedness! it's terrible I can't drive or anything because it's that bad...

Any ideas what's going on with me? I used to live out in the country back when it first started happening and very easily could have gotten bitten by ticks, but I never noticed anything that worried me.. just want to feel better!

thank you

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

Breaking up your post for easier reading for many here -

[ 02-06-2015, 02:20 AM: Message edited by: Robin123 ]

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Robin123
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Hi and welcome - well, I had a lot of tests done and as you said, NOTHING - repeatedly, I was told I was a medical mystery. So welcome to our club of NOTHING found!

Until...one day we get clued in. You can't find a bacterial infection with those tests!

However, I have never gone through the lightheadedness experience you're describing, so I'd like to defer to those who have dealt with it, for now. I actually don't know whether other health conditions can cause this.

In case you do want to receive referrals to Lyme-literate doctors, you can make a post in Seeking A Doctor and people will respond.

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lymegal23
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Hi there

Lyme disease is definitely a strong possibility for you. Lightheadedness and sensitivity to sound are very common Lyme disease symptoms. It's not unusual for Lyme disease to go completely undetected in routine blood tests. Most of us on here were all told our blood work was fine.

You said you lived in the country and could have been bitten. That's very possible. Most people don't even know they were ever bitten. Ticks can be the size of a poppy seed! So they're not easily noticed

You should definately look into finding an LLMD in you area/state

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lymegal23
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The lightheadti personally relate to. I couldn't drive either because of it. Many people describe it as "brain fog" or a drunken feeling. Since you have had brain MRI and seen ENT docs. I don't really know what else it could be besides Lyme related. I think you are on the right track here!
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Phoiph
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Please be careful about becoming addicted to Clonazepam (Klonipin). It is a living hell to come off of, and addiction can happen quickly. Doctors may not tell you this.

The symptoms of withdrawal can be very similar to Lyme, and can happen if you don't increase the dose over time, so it can cause the symptom picture to become even more obscure.

There are more natural alternatives you can try while you're figuring this out...

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hopingandpraying
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PM sent for Lyme-literate doctors (LLMDs) in WI.
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Lymetoo
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quote:
Originally posted by Phoiph:

Please be careful about becoming addicted to Clonazepam (Klonipin). It is a living hell to come off of, and addiction can happen quickly. Doctors may not tell you this.


-
Amen

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymegal23
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Yes clonazepam is definitely addicting. You can take naturally stuff to help with the anxiety. I had very bad panic attacks before starting treatment for Lyme and I took a natural supplement called Zen. It helped alot.

Anxiety is very common with Lyme. It effects your brain, and just struggling with symptoms can give you anxiety.

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norcal
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I believe you are on the right track. I experienced major lightheaded ness,sensitivity to sound and light and a bunch of other nasties.
The tests are a joke as you probably already know. Get a Lyme literate doc and go from there.
My tests were negative,I had very progressed symptoms. I am now what I would say recovered for the most part (5years treatment) .
Keep checking in let us know what you find out.

We care about you!

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skateboarddaily
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I heard most Lyme doctors don't accept insurance though? I can't afford to pay hundreds for all these blood test just to check? is this true
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lymegal23
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I responded to your private message

You don't have to put out money for expensive Lyme disease tests. You can just get regular Elisa and western blot Lyme tests that are covered by insurance. Lyme disease testing is so inaccurate that Lyme disease doctors don't really hold much value of them. They treat you based on your symptoms and your reaction to treatment

The antibiotics used to treat is covered by insurance. I don't pay anything for my antibiotics. You do have to pay for the doctors visits because health insurance companies don't cover Lyme doctor visits

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ralphi
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Benzos like Clonazepam are very addictive, BUT if you're only using it every so often, it should be ok.

I took Ativan every night for a couple of years and was able to wean off of it fairly quickly once I no longer needed. That said, everyone is different so definitely only use it when you need it, and perhaps try some herbal remedies? Magnesium can help.

Is there a way you can get a second opinion on the MRI? A "slight matter" could be many things...

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skateboarddaily
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who could I get a 2nd opinion from? have the neurologist look at it again? or how exactly do you go about that
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lymegal23
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You would have to ask for a copy of the MRI. They will give you a CD that has the MRI scans on it. Contact the medical records department of the hospital that you got the MRI scans at and they can give you it

Then make an appointment with a different neurologist and show them the MRI discussion and they can look at it and tell you what they think. Second opinions are always good to get.

Just make sure you don't go mentioning Lyme disease to the neurologist because most doctors don't know the truth about Lyme disease at all, so they will probably just say something stupid about it.

Have you had your vitamin B12 levels checked at all? What kind of blood work have you had so far?

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Lymetoo
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You could get your GP to run a western blot through Lab Corp .. YOU MIGHT get a positive.

Or... he/she might be willing to sign off on the test through Igenex.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymegal23
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On the other post you made. Someone mentioned if you've had your vitamin B12 levels checked.

Do you know if you have?

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skateboarddaily
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not sure if I have, but I think they would have told me if it were low
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Overwhelmed
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I sure it's not Lyme, although your symptoms seem all too familiar to me. I hate how such odd symptoms come on unexpectedly. For me, I developed anxiety one day on an airplane and had a full anxiety attack- which was so unusual since I flew on planes many times. Gradually I had other symptoms develop. Some weeks are better than others. I've noticed that my diet affects worsening of symptoms!! Consumption of any alcohol, refined sugary snacks and gluten make me feel much sicker. Maybe this will help you?

And, what did the tilt test tell you? Did the test make u feel sick and dizzy?


And

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lymegal23
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At this point it's hard to tell exactly what's totally going on here, but Lyme disease still does remain a possibility.

I suggest at this point though I would try a few trial and error things .

First I would try and seriously cut out carbohydrates and sugar, along with gluten. Mostly eat protein, veggies and very small amounts of Brown rice and gluten free bread and see if you feel any better after. Do this for a few weeks

This may help because Gluten is known to cause a lot of symptoms in the body. It's known to do alot more harm than people think. Also Candida overgrowth in the body can be caused by too much carbs and sugar. Look up Candida overgrowth for more info

The great thing about Lyme Literate Medical Doctors is that most of them understand about Candida and Gluten and the harm they cause. Most Lyme Literate Medical Doctors are Integrative Medicine and Alternative Medicine doctors so they have a vast knowledge of medical issues

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Judie
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You may have to be your own detective for your health problems. It can be like a puzzle when your dealing with health issues.

Tests that may give you an idea of what's going on. Most are paid for by insurance, but doctors don't think to run them:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=127210;p=0

I'd consider Lyme disease, fluoroquinolone toxicity (if you've taken cipro or levaquin), and multiple chemical sensitivity which gives light-headedness and makes a person worse when exposed to VOCs (new paint, out-gassing furniture, new construction, new building materials).

List of VOCs:

http://www.health.state.mn.us/divs/eh/indoorair/voc/

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'Kete-tracker
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*Just* lightheadedness isn't neccesarily Lyme, though I wouldn't rule it out.
It sounds neurological in nature, and should be pursued by a doctor who specializes in autonomical disorders (problems self-regulating body metabolics).

What have your blood pressure readings shown? Do your BP #s drop during episodes? Is it worse during a certain time of day?
Any history of this type of thing in either side of the family?
It's unusual that you first became strongly symptomatic at only 14 [years of age].

Anyhow, best of luck getting a proper Dx. Check back in with any further "finds".

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skateboarddaily
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I do have occasional chest pains and headaches. My BP has been a little high around 135/80 but I'm not sure if that's just cause I get kindof nervous at the doctors or what. It isn't worse at any certain time.. it's bascially I wake up and feel off, then I get up and feel lightheaded all day then I just go to bed. The lightheadedness does sometimes make it hard to focus when reading and stuff like that. it NEVER completely goes away but can get worse in places with a lot of movement such as restaurants which I've only been able to pull myself to go to once since I've felt like this.. it's hard to do much more than sit on the couch all day
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Phoiph
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Have you considered "Viral Labyrinthitis" or "Vestibular Neuritis"?

Someone I know has had very similar issues, and it turned out that he had the shingles virus in his inner ear/vestibular system. He had repeated bouts of vertigo and lightheadedness over several years (along with a difficulty processing sensory stimuli) which would come and go before he knew he had this, and during the last episode the shingles became visible, which was how he was diagnosed.

In addition to "dizziness" or "lightheadedness", here are some other symptoms:

"...Many people with chronic neuritis or labyrinthitis have difficulty describing their symptoms, and often become frustrated because although they may look healthy, they don't feel well. Without necessarily understanding the reason, they may observe that everyday activities are fatiguing or uncomfortable, such as walking around in a store, using a computer, being in a crowd, standing in the shower with their eyes closed, or turning their head to converse with another person at the dinner table. Some people find it difficult to work because of a persistent feeling of disorientation or "haziness", as well as difficulty with concentration and thinking..."

http://vestibular.org/labyrinthitis-and-vestibular-neuritis

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norcal
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Try Lymetap for assistance in getting a test done through Igenex. Go to [email protected]
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Catgirl
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Sounds like lyme and company. I used to have the lightheadedness too. You need to see LLMD or you will just go downhill. We all have wished lyme treatment would be covered, but reality is it is not, at least not by the best docs.

The ones who take insurance do what the insurance companies tell them to do, so treatment is poor. Labs are covered though. Do yourself a great big favor and find an LLMD fast. Find a way to make it happen.

Here is a great book to explain it all (worth reading): Cure Unknown, Weintraub.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Phoiph
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Skateboarddaily...

In relation to my post above, did your ENT do a VNG test?

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lymegal23
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I'm really glad to see how many people have given suggestions

So Skateboarddaily....what do you plan on pursuing? Do you have a plan at all at this point what you are going to get checked first?

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skateboarddaily
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I don't believe I had a VNG test, and most doctors I'm seeing seem to think it is anxiety or migrane related so that's where I am at now. They also do recommend that I go back to the cardiologist for a holter monitor just to be safe there as well, and I still plan on getting a Lyme test done at my general doctors office just to check but as far as a LLMD Im not quite sure my plans.
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lymegal23
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One more very important thing! When you get the results of your Lyme disease test, make sure you get a paper copy of the results and post the results on here. We can help interpret them! Definately get a paper copy of them.

I was told that my problem was anxiety and depression by all the docs I went to. And boy were they WRONG!!!!!

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skateboarddaily
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okay I'll get back to you next week with the results!
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Robin123
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Skateboard, you can't just do any old Lyme test! Some are not even worth the effort. Like the ELISA one is as good as a coin toss, and other labs might be weak re the Western Blot tests.

One of the best labs is IGeneX for the Western Blot IgM and IgG antibody tests - they can send you a free testkit - 800-832-3200. If you qualify for low income, you can get 75% off the testing cost through www.lymetap.com.

Any doctor can sign off on the tests. You get the blooddraw done early in the week in order to send it back to the lab early on in the week. The results will come back to the ordering doctor. They do not need to know about Lyme. You need a copy of the results and we can help you interpret them.

Just know that testing doesn't always come back positive even though people may have Lyme, so it's treated clinically a lot of the time.

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'Kete-tracker
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I second that, Skateboard. At the very least, your doctor should *insist* that the 2nd part if the "standard" Lyme test...the 'Western blots', be run no matter *what* the first part of the test, the Lyme titre, shows. (pronounced /ty'-ter/)

That just measures overall anti-body levels- for spirochetes & similar orgamisms, and can vary due to your own immune system's response.

A lot of labs now just won't 'run' the Blots unless the Lyme titre is 1.0 or higher.

A Lyme-literate doctor (LLMD) uses these 'W.B.' results to help interpret whether Lyme is the likely culprit.

For example, there are certain antibody-size "bands" checked for that are Lyme-specific, meaning only infection by Lyme disease can result in those bands showing up, or being "positive".
That helps confirm Lyme.
But diagnosing Lyme disease is a clinical one, which is why you need someone with some good experience in Dx'ing & treating it.

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