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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie LONG story.

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Author Topic: Newbie LONG story.
Show me Lyme
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Here's my story so far. Sorry about the length and the rambling.

December found small tick engorged on my thigh (3 days or more?). Itched pretty bad and turned red streaky but NOT bulls eye. I had swollen Lymph nodes and ill-feeling as well as terrible hangovers for the next couple months. It was ruled by docs (or is it ``ducks'') as bug, virus, flu, dental abscess, prostatitis and or aging ( I am a 30 year old perfectly healthy male). I did get a prescription for 200 mg Doxy for the ``bug'' and I noticed a rapid improvement to no symptoms in 4 days. I took the pills for 10 days total.
Mid March I noticed painful hand cramps and numbness while playing the guitar.
April 1st I woke up almost unable to walk due to my hips hurting terribly, as well as major fatigue, arthritis, swollen painful lymph nodes, blurred vision, small peeling blisters on my hands, severe irritability, difficulty writing, poor balance, morning shakes, couldn't get to sleep, light sensitivity, chest pain, trouble talking, and the good old feeling like I was dying !!!!!!. Back to duck and he asks me about Lyme. He orders bloodwork and it comes back perfect. Elisa .91. So he dismisses Lyme but prescribes more Doxy. Once again I noticed a rapid improvement in about 4-6 days. I was almost symptom free. I had 30 days of Doxy with refills this time and I was doing some Lyme research so I knew to keep taking them. But the cycle came back May 5th and hit me with more of the same, just not as bad. I doubled my Doxy to 400 mg daily and it knocked it down again. June 5th I was feeling better than I have felt in years for about 5 days. But by the 19th almost all symptoms returned. My duck is on his last leg with me and didn't give me an option to refill my prescription. He said that it couldn't be anything ``crazy like Lyme!! I've only seen it once in 30 years!!'' So I made an appointment with LLMD in K.C. and after being on the list for almost 2 months I figured I would call and check to see when I could get in. October!!!!! I asked to talk to the nurse and she told me that there was nothing she could tell me to do but wait and hope it didn't get any worse
So I feel like I was on a ship that got tossed out to sea, I rowed my a** off to get back to shore. Every time I almost get there, a wind comes and blows me back out to sea. The problem now is that I am growing tired of rowing, it's getting dark, and the boat is taking on water. I have 5 days of Doxy left and then don't know what to do, I am tired of sunburns, I am tired of ducks saying I'm not sick, I am tired of friends, family and co-workers not believing my make believe symptoms because I look perfectly fine, I am tired of being tired. But I guess it could always be worse. My symptoms are 99% a major irritation to my daily life and aren't keeping me from working or play. I am doing my best to live with them and not let them live with me, but we'll see what happens. Thanks for reading.

Posts: 20 | From Platte City, MO | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Ann-OH
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Lots of us have problems reading a solid block of print, so I am going to break it up. My comments are at the end.

[you wrote]
Here's my story so far. Sorry about the length and the rambling.

December found small tick engorged on my thigh (3 days or more?). Itched pretty bad and turned red streaky but NOT bulls eye.

I had swollen Lymph nodes and ill-feeling as well as terrible hangovers for the next couple months.

It was ruled by docs (or is it ``ducks'') as bug, virus, flu, dental abscess, prostatitis and or aging ( I am a 30 year old perfectly healthy male).

I did get a prescription for 200 mg Doxy for the ``bug'' and I noticed a rapid improvement to no symptoms in 4 days. I took the pills for 10 days total.

Mid March I noticed painful hand cramps and numbness while playing the guitar.

April 1st I woke up almost unable to walk due to my hips hurting terribly,

as well as major fatigue, arthritis, swollen painful lymph nodes, blurred vision, small peeling blisters on my hands, severe irritability, difficulty writing, poor balance, morning shakes, couldn't get to sleep, light sensitivity, chest pain, trouble talking, and the good old feeling like I was dying !!!!!!.

Back to duck and he asks me about Lyme. He orders bloodwork and it comes back perfect. Elisa .91.

So he dismisses Lyme but prescribes more Doxy.

Once again I noticed a rapid improvement in about 4-6 days. I was almost symptom free.

I had 30 days of Doxy with refills this time and I was doing some Lyme research so I knew to keep taking them.

But the cycle came back May 5th and hit me with more of the same, just not as bad.

I doubled my Doxy to 400 mg daily and it knocked it down again.

June 5th I was feeling better than I have felt in years for about 5 days. But by the 19th almost all symptoms returned.

My duck is on his last leg with me and didn't give me an option to refill my prescription.

He said that it couldn't be anything ``crazy like Lyme!! I've only seen it once in 30 years!!''

So I made an appointment with LLMD in K.C. and after being on the list for almost 2 months I figured I would call and check to see when I could get in. October!!!!!

I asked to talk to the nurse and she told me that there was nothing she could tell me to do but wait and hope it didn't get any worse

So I feel like I was on a ship that got tossed out to sea, I rowed my a** off to get back to shore. Every time I almost get there, a wind comes and blows me back out to sea.

The problem now is that I am growing tired of rowing, it's getting dark, and the boat is taking on water.

I have 5 days of Doxy left and then don't know what to do, I am tired of sunburns, I am tired of ducks saying I'm not sick, I am tired of friends, family and co-workers not believing my make believe symptoms because I look perfectly fine, I am tired of being tired.

But I guess it could always be worse. My symptoms are 99% a major irritation to my daily life and aren't keeping me from working or play.

I am doing my best to live with them and not let them live with me, but we'll see what happens.

Thanks for reading.
[end quote]

You could check to see if you could get into a doc in Springfield sooner than October. I don't know which side of KC you live, but I bet it wouldn't be a terribly long drive.

I will send you a private message.
Ann - OH

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Posts: 5705 | From Ohio | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
bettyg
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Ann, thanks for breaking this up for us all; you beat me to it!

Yes, check with Dr. C in Springfield, Missouri.
PM LYMETOO/TUTU; she'll give you phone no. & addres.

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treepatrol
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Sounds like you may have bartonella too.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Trina
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Hello,
I am sorry to hear you are going thru this.I got lyme disease in May an this has been one long roller coaster ride.I feel sick every other day.

Blood work will not show up well unless you have been off all antibiotics for 6 weeks. And then their is a diffrence in the type of blood test you get.I believe one you need is a western blot.

Some peple do not show lyme disease in their blood for a long time. Go to your local library and pick up a couple of good books on lyme disease.
Also the type of lyme in Missouri is very difficult to detect in blood work I have read.It mimics but is not the kind thay base their test on.Does that make sence? So I believe lab test have a hard time picking it up.

--------------------
Trina

Posts: 64 | From Mo. | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
HaplyCarlessdave
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Your story is all too familier.
The probibility that you still have lyme is
1. (translation: you definitely have lyme. Not only that; you probably have "co-infections", too-- these make the lyme much nastier.)

Now that you have at least a small supply of antibiotics, you should concentrate on finding a "lyme-literate" doctor- a doc that really knows about tickborne infections. The regular "American medical community" seems to be surprisingly ignorant about tick-borne diseases! You might try posting in the "seeking a doctor" section on this board or finding a local Lyme disease support group to help find a "LLMD", or lyme-literate doc.

In the meantime, if you think you may have babesia, you might consider supplementing your treatment with the herb artimesia anua. I started with 500mg 2X/day and increased to 100mg 2/day after a week and continued this dose. I took several days break every month. I was also on an atovaquone combi called 'malarone'.

You can get artimesia anua from "vitanet".
(I couldn't find the address, but should be findable.)

DaveS

Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
Lymetoo
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"Doctors" who prescribe less than 4-6 wks of abx for new tick bites ought to be shot. [No, I don't mean that literally!!]

Now you're in this big mess! ARRRRGGHH! You could probably get in to see the dr in Springfield before Oct. I would think FOR SURE you would be able to.

Check your PM!

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

Posts: 95729 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Aniek
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I just want to let you know you are not alone. Many of your symptoms sound like mine, only it took 17 years for them to escalate. I had intense hand pain before treatment and get the hip pain as well.

Keep in mind that you are on the right track. You've found this board, you're working to finding an LLMD. Things are hard now, but you really are steps ahead of many, many people. You've taken control of your life and you are moving forward.

-Aniek

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
hardynaka
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Similar story to mine too. Ducks don't believe I'm sick either while I felt I was just dying.

I don't think you will be able to wait so long until October if I followed your story well(frequent ups and downs...).

In your place, I would just buy Buhner's book and start with herbs (non-prescription) at least while you wait. Many of us here are only with herbs (me included) and doing quite well.

Andrographis, cats claw, sarsaparilla and frozen garlic can do wonders. If you're newly infected, astragalus can help a lot too! Plus cleansing herbs to help detoxing.

You can be almost sure you got co-infections, as this is the rule not the exception.

At least, these herbs would probably be able to keep you 'well' until your doctor's appointment in October.

Posts: 1086 | From Switzerland | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
   

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