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» LymeNet Flash » Questions and Discussion » Medical Questions » Question for those with Chronic Lyme

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Author Topic: Question for those with Chronic Lyme
natenate
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Hello everyone,

I explained my story in the Dr. Search forum but I will re-iterate a summary here so you understand where I am coming from.

When I was in college I started having strange symptoms - forgetfulness, dizziness, gastrointestinal problems, etc - so i went through the runaround with many doctors who ran all the obvious tests...MRI, CT Scans, Spinal Taps, etc. All came back negative.

My symptoms have persisted for six years.

My question is this: Do those who experience something similar ever have days where some things feel normal? Because for me it has been a constant, progressive horror that has only worsened in six years. Now my joints are starting to go and I can barely function to work...

This forum is a blessing and I hope I can get to the bottom of what's going on with me soon because I am running out of options.....

Thank YOu

Posts: 5 | From mass | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
lymeinhell
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Hello and Welcome!

All I can share is my own personal experience. Before diagnosis and treatment, some symptoms would wax and wane, returning at random at different severity.

'Normal' days or hours really didn't return until after several months of treatment. Prior to diagnosis and treatment, for the most part, over the long term, symptoms did get worse.

Sorry your issues have brought you here, but you're in a good place to find help.

A good LLMD should help you figure out what's going on. Be sure to read the information posted on Yeast (Candida) as the symptoms really are a crossover and it's typically an issue for most of us, either before treatment, or as a result of long term antibiotic treatment.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
natenate
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Thank you for your response,

See, that's what concerns me about my situation. My symptoms have never waxed or waned. My dizziness and memory loss has never gone away :-/

I'm confused to the point where it's difficult for me to use the information provided here to help myself out...

I have contacted a few local docs thanks to a gracious response to my post in the other forum...

If nothing else I need words of encouragement...

Thank you

Posts: 5 | From mass | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
tailz
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You may also have microwave sickness. Each time they add a new tower or bump up the power, my Lyme worsens.

More users = more towers = more Lyme.

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Visual Afterimage Man
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NateNate,

I've been there!! Your story sounds much like mine.. however I looked for 18 months before I found my LLMD.. 6 years is a very long time to feel horrible!!

A western blot from Igenex will answer many questions for you. I also see you are from Mass, where lyme is very thick. Most of the docs in your area are educated on the endemic that is going on in the NE.

Find an LLMD.. Listen closely.. and start healing. It's a very long road but but once you find the road it's a bit comforting.

To me... not having a diagnosis was pure hell. I KNEW something was wrong with me, but I couldn't figure out what. "It's all in your head" was getting a bit old.

Hang in there. Take the blood test and report back to us!

--------------------
26 months of treatment. And counting.......

Posts: 298 | From Northeast Kansas | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
heiwalove
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at my sickest my symptoms got progressively worse, until i was so ill i was completely bedbound. i never had a normal minute, nevermind a normal day; every conscious moment was excruciating.

lyme affects each of us differently, and the level of severity varies as well.

--------------------
http://www.myspace.com/violinexplosion

Posts: 1848 | From seattle, wa | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
lymeinhell
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Not sure if this helps, but here's my story

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=060418

People DO get better, even after being undiagnosed for more than a decade - I should know, as I've been there and back.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
Andie333
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Natenate,

Sorry you've been living in so much pain and with so many symptoms. But I'm so glad you found your way to this forum.

My symptoms were periodic, until I hit a point they were ongoing and only getting worse.

I found an LLMD and started taking antibiotics for Lyme and two co-infections in June 2005. I'm not 100%, but I'm well enough now to be back at work fulltime. So, yes, people do get better.

For me, just having the diagnosis was an incredible relief. At least I could understand what I was dealing with!

Keep us posted!

Andie

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Geneal
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I believe I've had symptoms for years but put them off to

Having two small children, getting older, etc.

It took an extremely stressful situation (ie Katrina),

To sort of bring more symptoms out in the open.

I started with constant bouts of pink eye, blurry vision, word recall issues

Especially around that monthly time, joint pain....

When I crashed....it was hard.

I thought I was having a heart attack. Couldn't get a good breath,

Was shaking, sick, and it just got worse.

I guess I am lucky as it only took me 4 specialists before I

Really started looking to the internet for my answers based on my symptoms.

It was either Lupus or Lyme and I knew it wasn't lupus.

I had a full Ana panel run which was negative.

I then had to find a doctor to actually do a Western Blot on me.

Found this site after being diagnosed.....was led to a LLMD.

I know at least one of my children is congenital....

My husband has Lyme as do 10/11 neighbors.

I was the first to go down that road.

Hang in there.

Help is on the way.

Welcome! [Smile]

Hugs,

Geneal

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Cass A
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Dear Natenate,

I have been relatively lucky that the symptoms have been on and off instead of one progressive downward slide!!

You might need systemic detoxifiers. The genetic test for whether your body can get rid of biotoxins or not has been discussed here frequently.

Whatever your path, start on it right away!!

CalifornaLyme was on IV antibiotcs for many, many months, as her symptoms were on a downward rocket ride. Neuroborreliosis is not forgiving.

Best to you,

Cass A

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IMHisda
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Natenate

I went undiagnosed for twelve years. Fortunately, I was told by a LLMD I have a less potent strain so it took a long time to work it's way into my neuro system but now is everywhere so if you have a positive lyme test I'd get treated ASAP. I can't remember if I had the waxing and waning - don't think so I always felt like a truck ran me over but the headaches would come and go. I guess it depends on which symptoms you mean.

--------------------
RV

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onthemend
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Just like Heiwa love, a horrible, progressive slide until almost completely bedbound.

otm

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onthemend
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Sorry, should have added - which was completely halted after about 6 weeks on doxy, and then REVERSED with longer-term therapy. I don't have a COMPLETE recovery yet, but I have a SUBSTANTIAL one, and I DO have a lot of life back. Which was totally taken from me before abx.

otm

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natenate
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Thank you for the responses, everyone.

I read them but I am being completely honest when I say it's difficult for me to respond individually. At any rate, Thank you for the personal stories.

I accepted a long time ago that I would never get better which has calmed my anxiety, for sure. Now I've reached a point where I've hit the wall and I'm just crashing. I have no diagnosis and no treatment. I really don't know what to do as securing a doctor is difficult, though I have tried.

My primary care, although well intentioned, is worthless. I'm frankly fed up with hearing "you're too young to have something wrong with you". It's insulting....

And if I get upset with him or any doctor, they just say i'm anxious and they give me Xanax. I won't take it because it has nothing to do with my problem.

Thank you all I appreciate the support.

Take care,

Nate

P.S. I heard back from Dr. X in Massachusetts who said he would schedule and appt. but I have not heard back from them yet :/

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lymednva
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Natenate, don't despair. Once you find the right LLMD for you, you can get better!

I have traced my symptoms back to my childhood, over 40 years of them before I was finally dx'd.

Like Geneal I wrote off my ever increasing symptoms to getting "older." Looking back, I wasn't really that old then!

Going through a divorce really brought them out, but it was all attributed to depression triggered by the divorce.

Then my therapist and attorney began to tell me it was going on too long for it to be just that, and that my symptoms were medical, not emotional.

Unfortunately my doctor told me everything was normal, although he didn't really look too hard!

As my health continued to decline, my fatigue got worse and worse, to the point I was falling asleep in the school library while my class was there for a lesson!

Eveything came to a head that summer when I was selling my home, helping my elderly mother sell hers, so we could move in together, and one of my sons was diagosed with a serious mental illness and hosptialized twice in one month.

We moved in late August and I returned to work the following week. I was able to teach for three weeks before I had to leave.

Within a month I was bedridden. After finding a different doctor I was finally dx'd with CFS and FM in December. It was over years later that I was finally dx'd with Lyme.

My Lyme dx gave me hope. Before I felt I was going to be in the same condition for the rest of my life. I knew Lyme was treatable, and for me it has been a road back to health, although sometimes slowly.

I have away to go, but am seeing progress, and others see it in me, too. My pain is better, I am able to walk further, and my stamina is better.

Roght now I would say that finding the right LLMD for you is key. You are lucky to live where there are choices, just as there are in my area.

Good luck!

--------------------
Lymednva

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broguearcher
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quote:
Originally posted by tailz:
You may also have microwave sickness. Each time they add a new tower or bump up the power, my Lyme worsens.

More users = more towers = more Lyme.

and what about the little green men that visit in the middle of the night?? I hear they're actually quite friendly so they probably aren't to blame for our sicknesses.
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natenate
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Thank you to everyone that sent private messages.

I am working hard to piece my medical record together now...I will keep you all posted.

Thank you thank you thank you.

Posts: 5 | From mass | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
   

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