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VNG results
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VNG results

Well my vestibubular system is "perfect" in the words of the ENT. The ENT feels that I need a LP.He spoke to several infectious disease folks and he feels we need to pursue the whole tick bite thing.

I have the sucker in a zip lock bag... can't we just give him a little spinal tap?

Well I have to say that for the first time this weekend I was able to walk in the grocery store and help my hubby shop. I couldn't unload the cart but I spent 1 1/2 hours walking. I also filled 2 bags with leaves today. These things are huge! I just cried in my yard today so grateful that I was able if only for 2 bags. If you had asked me about gardening in December I would have told you that I would never be in my yard again.

I try not question it and just enjoy the moments that I feel somewhat normal. What are the chances that my mother and I live 250 miles apart and we both get lymes disease?

Rebeccah

I've been on the Antibiotics for 10 days. We shall see.
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I hope that you have found your diagnosis!  I know what it feels like to have so many things go wrong and then not be able to get answers from your doctors for months and months.  This would definitely be a victory for you!

I recently saw an MS specialist and he thought the root of my problem was vascular and suggested that I try taking a medication (to relax my blood vessels) so I could at least be treated symptomatically.  I have been on it less than a week and I can tell such a difference....I was out in my yard working also and I can totally relate to all of what you said about that!  We live on 17 acres and I have to admit that I was worried I wouldn't be able to garden, etc. any more.  My husband even told me yesterday that I seemed like my old self again.  

I am also just trying to enjoy any good days and hope they keep coming.  I think this is the longest stretch that I have had w/o any new symptoms (@ a week).  I know that I am not "cured" by any means, but it is such a relief to have a break from the progression that has been going on.

Keep us informed--did you test positive for lyme? ( My test came back negative last week)

Stacey
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Stacey

I tested negative on the elise and the western blot. My mother has chronic lyme and she tested negative for 2 years. She finally tested positive with a PCR urine. The tick DNA was in her urine. I don't mean to scare you but the lymes test are very unrealiable and like MS no 2 people present the same.

I 'm very fortunate to have found the tick. he left a red mark that lasted for awhile (more than a week) the doc blew it off. I kept him..he's in my chart.

I am so happy that you found some relief. Those moments where you hold your breath because you feel normal...they are nice. I hope that you have lots more of those days!!

Rebeccah
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Hi Rebeccah,

So now they are pursuing the tick bite thing....are they going to do the urine  PCR thing for you?

When do you have the LP?  

Glad to hear the ENT ruled out the vestibular stuff.


Next week I am having an EEG to rule out epilepsy, then I will get referred to Nuero and ENT.  I still have some ear issues/sinus stuff that has not cleared up and my gut instinct tells me I should investigate this further.  Im in for a long haul.  I am not good with patience....I have to wait for the EEG, then wait 4wks to see the physician for the results, then only to be given a referral for a Neuro and ENT and now we are looking at APril so I am not happy about this.

Im back at work this week and finding it hard.  I can so relate to you and Stacey with the good days and bad days.

Yesterday I was feeling fantastic, so happy to be back at work, keep my mind occupied, today I struggled, was all brain fogged, confused, memory shot to pieces and muscles aching, blurring eyes.

I am a florist so we are getting ready for Valentines Day, Ive just had the girl I usually get in to help me say she cant come.  I am completely going to be relying on my family for help this year as its the one time of year I do need to be ok.

I had to stop work 1 wk short of the Christmas Trade last year because of this illness.  They wanted to admit me into hospital and I said no...I had customers relying on me to fill their orders for xmas.  I look back at that now and cannot believe I did that.
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362692_tn?1248642793
I believe that peple that are struck with any chronic illness tend to be these amazingly strong (stuborne:) people. Florist... you have my dream job. I love my garden and I always said that one day I wanted my nursery or florist shop. Hang in there. I wish I was there ...I would help.

My PCP is currently doing a 3 week antibiotic trial for lyme. He has agreed that at the end we would pursue an Igneix test kit. He wants time o research it for himself. The urine PCR can be done as part of that test kit. I did discover last night that Igenix will take my tick. Ha! that little sucker is in for it now!  4 MRi, EMG, Veng, thousands of dollars of blood work! Let's not forget the LP I have yet to endure!

The ENT feels strongly that we need to know if this lyme because really long term IV treament is necessary. If anyone wants to check out this lymes site  www.truthaboutlymedisease.com

Lyme should still show up in a LP. So I am going to call this infectious disease guy that my ENT referrred. He apparently is more than happy to poke my spine. My ENT felt I should try to have it done before Hopkins.

I have to say that my PCP is an angel. He does not know what is wrong with me but he knows that my pain is real. He doesn't even pretend to know....So he has been more than accomadating with the refferals.

Through this journey I found  the key is finding one doc that is proactive and believes that what you are experiencing is real. I really don't know know where I would be with out my PCP. It also helps that my hubby is military and the insurenece I have doesn't require a referral. I am very fortunate with that.

My response to your situation is that epilepsy is neurological condition so why wait for the referral? Shouldn't neuro be consulted and involved in treatment? Quix was the one that told me about the VENG with ENT it was good thing to do. So when you meet with ENT you might want to ask about it .  She also recommended researching and finding an ENT that is a vertigo/balance specialist. Google VEDA.

Hang in there and I will pray that you continue to have days where you feel great!


Rebeccah

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