Central Wisconsin Lyme Issue

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Lyme Victim

Milwaukee, WI

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#1
Nov 23, 2006
 

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I am writing regarding the plight of Wisconsinites suffering from Lyme disease and co-infections, which ticks carry. I am also including legislation recently passed in California to protect doctorís who are treating those suffering with Lyme disease from needless persecution from state medical boards over the prescribing of long-term antibiotics to effectively treat this disease.

Several other states have adopted or are considering adopting similar legislation, including CA., New York, Rhode Island, Connecticut, Texas, Florida, etc. Along with several eastern states, Wisconsin is one of the most endemic in the country for lyme and co-infections.

The CDC estimates that only one in every ten of those with Lyme disease is actually reported. Wisconsin documented over 1,000 cases of Lyme disease last year. The actual number may be well over 10,000.

The vast majority of physicians in Wisconsin are either woefully uneducated abut this disease, mis-diagnose, under-treat when they do diagnose, or are fearful of treating with long-term antibiotics because of state medical board inquiries. Thereís little doubt that antibiotics have been over-prescribed for fluís, colds and viruses. However, lyme can be an extremely debilitating, painful, difficult to treat, and even fatal disease once it achieves major organ involvement. Given the choice, Wisconsinites will gladly take the minor risk of long-term antibiotic therapy over the painful, debilitating and life threatening choice of leaving their lyme disease under-treated or not treated at all.

There are a few doctors in this state who are quite knowledgeable of lyme and co-infection treatment. Unfortunately they are one medical board inquiry away from being forced out of their practice. Thus, leaving thousands of ill people without treatment or any hope of receiving adequate treatment in this state. Most physicians would have absolutely no qualms about treating acne with long-term antibiotics, which is done routinely. Yet, many Wisconsin physicians fear prescribing long-term antibiotic therapy for serious illnesses such as lyme, babesia, bartonella, and erlichiosis, because of repercussions.

It has been documented that insurance companies were actually bringing complaints to medical boards out east in an effort to "save costs", informing them of doctorís prescribing long-term antibiotics to treat lyme. As victims of this disease we keep going from doctor to doctor, have test after test to no avail. I keep wondering how insurance companies think they saved any money with us? Do they really believe that people will stop searching for answers to their ailments?

That is why it was deemed necessary to protect these doctorís through the legislative process.

Personally, Lyme disease was suspected already as far back as 1991. I had 3 rashes under my breast and the Doctor looked at it and said I had ringworm. Some of the problems, just to name a few were, headaches, sinus problems (balance or equilibrium disturbance), carpel tunnel, aching joints, heart palpitations, arrhythmia, edema, heart burn, vision problems, light sensitivity, sound sensitivity, muscle spasms, numbness, cold intolerance, sleeping problems, equilibrium. Unfortunately, our story is not an uncommon one when Lyme disease strikes Wisconsin residents. In fact, it is more the norm. Unless a patient walks in an MDís office with the telltale "bullís-eye" rash associated with early lyme disease {less than 40% do} they will almost assuredly go undiagnosed and untreated. Even with the rash, physicians will still not test for lyme.

Truly, legislation would have a profound effect on Lyme disease treatment in this state, by offering MDís {willing and knowledgeable in lyme} to practice unencumbered from the fear of medical board reprisals.

Lyme disease has now become the fastest growing vector-borne illness in the country, even surpassing AIDS in number.
danter

La Crosse, WI

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#2
Aug 9, 2007
 

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I had the bullseye rash last summer. My dh didn't find a tick in the center so decided I didn't need the medical expense. My doctor is now refusing to treat it, even though the entire family saw the bullseye and the symptoms I live with everyday. She told me at my annual checkup this morning that the bullseye rash only goes away when my body has fought off the lyme disease. She did a blood test a month ago when I had several ticks attached to me, one on the calf of my leg and one under my belly.(We bike or hike daily, using Deep Woods Off). The test came back low so she said that is a negative. Why would I have any score at all if it wasn't there? She says she will not treat it. Instead I am to have two other doctor appointments to deal with the ringing in my ears...and that's just ONE of the symptoms I'm dealing with. Where is there a doctor in MN, IA or WI willing to treat this? Before we get into the expensive tests to confirm I have the symptoms that can't be treated, I'd much rather just get to a doctor that is willing to treat the disease. I am sooo frustrated that it is so difficult to get a doctor to treat this. I know my husband regrets not letting me go to the doctor when I had the bullseye now, but what a price for me to pay!
Julie

United States

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#3
Sep 7, 2007
 

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danter wrote:
I had the bullseye rash last summer. My dh didn't find a tick in the center so decided I didn't need the medical expense. My doctor is now refusing to treat it, even though the entire family saw the bullseye and the symptoms I live with everyday. She told me at my annual checkup this morning that the bullseye rash only goes away when my body has fought off the lyme disease. She did a blood test a month ago when I had several ticks attached to me, one on the calf of my leg and one under my belly.(We bike or hike daily, using Deep Woods Off). The test came back low so she said that is a negative. Why would I have any score at all if it wasn't there? She says she will not treat it. Instead I am to have two other doctor appointments to deal with the ringing in my ears...and that's just ONE of the symptoms I'm dealing with. Where is there a doctor in MN, IA or WI willing to treat this? Before we get into the expensive tests to confirm I have the symptoms that can't be treated, I'd much rather just get to a doctor that is willing to treat the disease. I am sooo frustrated that it is so difficult to get a doctor to treat this. I know my husband regrets not letting me go to the doctor when I had the bullseye now, but what a price for me to pay!
My family and I are suffering severely from not being treated in time for lyme disease, tests are ineffective for so many reasons and there are many, many lyme symptoms, it can be very debilitating! Please seek treatment ASAP. I heard there is a very good lyme doctor at the Fox Valley Wellness Clinic in Fond du Lac, WI. Also, some lyme websites have lyme-literate doctor listings by location. Some good websites are: www.lyme.org and www.canlyme.com (they also have a symptoms list on that website) Take care and I pray you get the treatment you need.

“Do I have Lymes??”

Since: Mar 08

Brandon Wisconsin

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#4
Mar 11, 2008
 

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This is all very disturbing to say the least! I aswell have the same story as so many others. I had three small red rings with red dots in the middle on my chest about 1 1/2 years ago. I used to drink alot and thought I had just burned my self while soldering some metal tube or
something and just didnt notice or remember. But I
couldnt understand how the dots got into the middle of
the rings. The small rings lasted about 1 1/2 weeks. I am in Fond Du Lac county and have pulled many wood tics
off from me. Since then Ive been plaged with exsplained nite sweats and low grade fevers,dizzyness and loss of cordination a bad rash on my toes. throat infections. And burning sensation on my face and ears. In the last year I have noticed my hangover becoming so much stronger. And when I would drink heavy I would go
into a state of total confusion everytime. This was not
normal at all. In the past 5 months I have developed a
terrable head ache and the ringing in my ears is so bad
sometimes its hard to understand what peaple are
saying. And extreem dementia and minor dislexia that
comes and gose. Almost overnite I was hit with terrable
loss of cordination confusion and terrable heart pounding
and extreem fatige and shortness of breath. My hands
and legs are getting shakier and weeker by the day. Also
about a year ago I noticed that cold hurts my fingers and now it so bad it hurts just to hold an apple from the fridge. Also on bad days my toung wont work right and its hard to talk ,it feels like my mouth is full of peanutbutter. O ya and also the sinuse problems are here too. And for about a year I had poping and pressur in my left ear untill I was given penicillin. Ive been tested and scaned for almost everything but lymes until last week. I have quit drinking totaly. I told the nurse I would rather just skip to the Westurn Blot but was refused and told this is ware we will start. I said even if it comes back negative I will insist on the Westurn Blot. Just as with many stories it was negative and I have been flat out ignored ever since! I wish I'de have know sooner what I know now. Ive been given a short turm treatment of Doxycycline 100 mil twice a day. My head is feeling better, my mind clearer. with in about 4 days all my symtoms got realy bad I could hardly talk. I have heard this is a sure sign that I have lymes and it is being killed. Unfortunatly, from what I hear, if i dont get better treatment with long turm antibiotics it will probly come back and could be irreversable. And it isnt even close to being all gone yet anyways! This is the scariest thing I have ever gone through. Almost everyone I talk to tells me Im just understress and should not worry! Can you emagine being slowly paralized and confused and yet being soly responcible for exspaineing your own illness onto def ears??. I feel so alone in this and im also angery at the ignorance of doctors and others. The good news is that I live very close to Fond Du Lac and hope to visit the lymes doctor soon.

Jeff Waltenberry

“Do I have Lymes??”

Since: Mar 08

Brandon Wisconsin

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#5
Mar 11, 2008
 

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This is all very disturbing to say the least! I aswell have
the same story as so many others. I had three small red
rings with red dots in the middle on my chest about 1 1/2
years ago. I used to drink alot and thought I had just
burned my self while soldering some metal tube or
something and just didnt notice or remember. But I
couldnt understand how the dots got into the middle of
the rings. The small rings lasted about 1 1/2 weeks. I am
in Fond Du Lac county and have pulled many wood tics
off from me. Since then Ive been plaged with
unexsplained nite sweats and low grade fevers,dizzyness
and loss of cordination a bad rash on my toes. throat
infections. And burning sensation on my face and ears. In
the last year I have noticed my hangover becoming so
much stronger. And when I would drink heavy I would go
into a state of total confusion everytime. This was not
normal at all. In the past 5 months I have developed a
terrable head ache and the ringing in my ears is so bad
sometimes its hard to understand what peaple are
saying. And extreem dementia and minor dislexia that
comes and gose. Almost overnite I was hit with terrable
loss of cordination confusion and terrable heart pounding
and extreem fatige and shortness of breath. My hands
and legs are getting shakier and weeker by the day. Also
about a year ago I noticed that cold hurts my fingers and
now it so bad it hurts just to hold an apple from the
fridge. Also on bad days my toung wont work right and its
hard to talk ,it feels like my mouth is full of peanutbutter.
O ya and also the sinuse problems are here too. And for
about a year I had poping and pressur in my left ear untill
I was given penicillin. Ive been tested and scaned for
almost everything but lymes until last week. I have quit
drinking totaly. I told the nurse I would rather just skip to
the Westurn Blot but was refused and told this is ware
we will start. I said even if it comes back negative I will
insist on the Westurn Blot. Just as with many stories it
was negative and I have been flat out ignored ever since!
I wish I'de have know sooner what I know now. Ive been
given a short turm treatment of Doxycycline 100 mil
twice a day. My head is feeling better, my mind clearer.
with in about 4 days all my symtoms got realy bad I could
hardly talk. I have heard this is a sure sign that I have
lymes and it is being killed. Unfortunatly, from what I
hear, if i dont get better treatment with long turm
antibiotics it will probly come back and could be
irreversable. And it isnt even close to being all gone yet
anyways! This is the scariest thing I have ever gone
through. Almost everyone I talk to tells me Im just
understress and should not worry! Can you emagine
being slowly paralized and confused and yet being soly
responcible for exspaineing your own illness onto def
ears??. I feel so alone in this and im also angery at the
ignorance of doctors and others. The good news is that I
do live very close to Fond Du Lac and hope to visit the
lymes doctor soon.

Jeff Waltenberry
dianndesign

United States

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#6
Sep 10, 2008
 
I'm trying to find a lyme doctor. I've heard there is a specialsit in Lymes disease in Fon du Lac. I believe it's a female. Does anyone know her name or where she is affliated?
plb

Wheaton, IL

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#7
Sep 21, 2008
 
has anyone done the quinine clyndamyacin drugs yet?I have babesios.
Barb

United States

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#8
Sep 23, 2008
 
dianndesign wrote:
I'm trying to find a lyme doctor. I've heard there is a specialsit in Lymes disease in Fon du Lac. I believe it's a female. Does anyone know her name or where she is affliated?
Dr. Steven Meress, Fox Valley Wellness Center
jen

Milwaukee, WI

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#9
Jan 7, 2009
 
Hi. my son also has lymes. Also could not get it diagnosed until he went to Dr. Ryser in Kansas City. We live in WI. So we were lucky to find her. I do believe she has a website. Good Luck! JN
danter wrote:
I had the bullseye rash last summer. My dh didn't find a tick in the center so decided I didn't need the medical expense. My doctor is now refusing to treat it, even though the entire family saw the bullseye and the symptoms I live with everyday. She told me at my annual checkup this morning that the bullseye rash only goes away when my body has fought off the lyme disease. She did a blood test a month ago when I had several ticks attached to me, one on the calf of my leg and one under my belly.(We bike or hike daily, using Deep Woods Off). The test came back low so she said that is a negative. Why would I have any score at all if it wasn't there? She says she will not treat it. Instead I am to have two other doctor appointments to deal with the ringing in my ears...and that's just ONE of the symptoms I'm dealing with. Where is there a doctor in MN, IA or WI willing to treat this? Before we get into the expensive tests to confirm I have the symptoms that can't be treated, I'd much rather just get to a doctor that is willing to treat the disease. I am sooo frustrated that it is so difficult to get a doctor to treat this. I know my husband regrets not letting me go to the doctor when I had the bullseye now, but what a price for me to pay!
roberta

Brookfield, WI

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#10
Jan 17, 2009
 
I have the name of Dr in Waupaca, Wi who does the Stoneybrook test for Lymes, Test is sent to stoneybrook, N.Y. He gave a talk on it in Eagle River WI where he use to practice also.
He is treating someone from Rhinelander WI and that person is doing very well. He had been terribly ill with Lyme.
Joyce

Glenwood, WA

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#11
Mar 11, 2009
 
Any thoughts on which Dr. would be best...Dr. M or Dr. in Waupaca?
BadgerBrian

Madison, WI

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#12
Apr 14, 2009
 
Dear "Danter,"
Based on the date of this post, I hope you've already been (or are being treated) by a competent Lyme doc, but just in case...

I've had daily, monster headaches for 10 years, as well as various other maladies--chronic fatigue, sleep disturbances and insomnia, depression, carpal tunnel, and on & on.

After being seen & treated by many, many traditional doctors & specialists, as well as having my "energy fields" worked on, Healing Touch, acupuncture, and everything in between, a friend who was diagnosed with Lyme three years ago sent me to see Dr. Meress at the Fox Valley Wellness Center in Fond du Lac.
I'm based in Madison, but we've camped and now have a cabin near Eau Claire for 15 years, and that's where I think I picked the tick-borne illnesses.

After blood tests for Lyme and other co-infections, Dr. Meress found Lyme, Rocky Mountain Spotted Fever and San Jaoquin Valley Fever.

This diagnosis finally came after already being tested by my general practioner docs three times for Lyme, but all used the same test, which I found out was INcorrect 60% of the time.

So to make a long story short, I'm halfway through a three-month treatment of three antibiotics, combined with many vitamins and natural supplements--I'm currently taking almost 70 pills a day!
Meress believes that your body & immune system have to be brought up to it's maximum ability & balance to fight Lyme--for instance, some of my labs showed my body was deficient of Vitamin D, Zinc and other vitamins & minerals.

I cannot say if this will work, or that I'm feeling better--I'm not. In fact, some days I still feel horrible. However, I was told that when the Lyme die-off and are released into the bloodstream, the neurotoxins created by the die-off will make me feel rotten before I will start feeling better.

But what I do know for sure is that at least I now have a reason for why I've been suffering so much for the past decade, and that's a start to getting better--Meress is treating the cause instead of just the symptom.
Everyone is different, and everyone will have a different course of action, but like I said, it's a start...best of luck to you.

Take care,
Brian
danter wrote:
I had the bullseye rash last summer. My dh didn't find a tick in the center so decided I didn't need the medical expense. My doctor is now refusing to treat it, even though the entire family saw the bullseye and the symptoms I live with everyday. She told me at my annual checkup this morning that the bullseye rash only goes away when my body has fought off the lyme disease. She did a blood test a month ago when I had several ticks attached to me, one on the calf of my leg and one under my belly.(We bike or hike daily, using Deep Woods Off). The test came back low so she said that is a negative. Why would I have any score at all if it wasn't there? She says she will not treat it. Instead I am to have two other doctor appointments to deal with the ringing in my ears...and that's just ONE of the symptoms I'm dealing with. Where is there a doctor in MN, IA or WI willing to treat this? Before we get into the expensive tests to confirm I have the symptoms that can't be treated, I'd much rather just get to a doctor that is willing to treat the disease. I am sooo frustrated that it is so difficult to get a doctor to treat this. I know my husband regrets not letting me go to the doctor when I had the bullseye now, but what a price for me to pay!
BadgerBrian

Madison, WI

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#13
Apr 14, 2009
 
Dear Joyce,
Please contact Dr. Meress at the Fox Valley Wellness Center--their website is www.foxvalleywellness.com .

Best of luck,
Brian
Joyce wrote:
Any thoughts on which Dr. would be best...Dr. M or Dr. in Waupaca?
BadgerBrian

Madison, WI

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#14
Apr 14, 2009
 
Dear Roberta,
I've never heard of the "Stoneybrook" test for Lyme, but I've found out through my experiences that more than one type of test has to be performed if Lyme disease is suspected.

I feel that they are incredibly thorough at the Fox Valley Wellness Center with their testing, looking for co-infections as well as performing several different tests for Lyme disease--apparently, Lyme is incredibly tricky to diagnose, which is why it took four or five tests in 10 years to finally get a correct diagnosis--my regular docs were just repeating the same one test over & over, which is incorrect more often than not.

Please consider a consultation with Dr. Steven Meress at the Fox Valley Wellness Center--their website is www.foxvalleywellness.com .

Someone else at this forum mentioned the website www.canlyme.com , and I agree that this is an awesome resource.

Last summer, I wrote to Jim Wilson through this website, and he's the president of the Canadian Lyme Disease Foundation.
He explained which tests to ask for, and where the lab work should be sent.
He was a great deal of help in looking for an answer for what was making me so sick, and I found out that Dr. Meress does the tests that Mr. Wilson recommended, and sends them to the same recommended labs.

Good luck Roberta, and to everyone out there that has been plagued by illness or poor health that just don't know why they feel the way they do--I have been there, and if I had a nickel for every health specialist and practitioner that said, "I can cure you," or "maybe it's stress," or "sorry, we've done everything we can for you," well, I could make nickel soup.
I'm not better yet, but I have an answer now, and at least I'm now heading in the right direction.

Please don't wait another day--Lyme untreated can have devastating or even fatal consequences.
Canlyme.com states that "fatalities [from Lyme disease] are recorded ranging from heart problems to suicide."

If you suspect you, or someone you care about, has Lyme disease, take action today!

Take care,
Brian
roberta wrote:
I have the name of Dr in Waupaca, Wi who does the Stoneybrook test for Lymes, Test is sent to stoneybrook, N.Y. He gave a talk on it in Eagle River WI where he use to practice also.
He is treating someone from Rhinelander WI and that person is doing very well. He had been terribly ill with Lyme.
atg

De Forest, WI

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#15
May 9, 2009
 
roberta wrote:
I have the name of Dr in Waupaca, Wi who does the Stoneybrook test for Lymes, Test is sent to stoneybrook, N.Y. He gave a talk on it in Eagle River WI where he use to practice also.
He is treating someone from Rhinelander WI and that person is doing very well. He had been terribly ill with Lyme.
Could you give me the name and mumber of the Dr. in Waupaca?
atg

De Forest, WI

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#16
May 9, 2009
 
I would like the name and number of the Dr. in Waupaca, as I have been searching for a Lymes knowledgable Dr. for a while.
Amy - Wis Rapids

United States

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#17
May 18, 2009
 
My husband has suffered with Lyme disease symptoms and has had several blood tests which come back negative. our family doctor will not treat my husband because the blood tests are negative. i have read several books that state a blood test can be negative but one can still have lyme disease. he has suffered with this for at least 3 years - pain in his neck, ear, joints, back, dizzy, visual problems. we visited a homorpaethic doctor in MAdison who confirmed my hubby had lyme disease and gave us some things that he did take and helped. has anyone seen or talked with this doctor from Fond du Lac - Dr. Steven Meress, Fox Valley Wellness Center.
BadgerBrian

Oregon, WI

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#18
May 18, 2009
 
Hi Amy,
Please read my posts from April 14--my GP's tested me three times for Lyme, and they had all come back negative.

Most general practitioners run ONE test for Lyme--either the Western Blot or ELISA, and one of those tests is INcorrect 60% of the time.

According to several sources, a minimum of four to six tests for Lyme & co-infections are needed to get an accurate diagnosis.

Get this--I asked my doc to refer me to the UW Infectious Disease Center (and he did) to definitively rule out Lyme, but since my one test showed that I didn't have Lyme, they wouldn't see me--what the hell is that? Apparently I have to have Lyme to be seen to be tested accurately for Lyme.
If they don't know what the right tests are for Lyme at the Infectious Disease Center, then this is a bigger problem than I could imagine.

After TEN YEARS of daily monster headaches, fatigue, insomnia, carpal tunnel and other symptoms, and after ten years of seeing every doc, specialist and quack under the sun, Dr. Meress at the Fox Valley Wellness Center was the doc who finally ran the right tests and found Lyme, Rocky Mountain Spotted Fever and San Jaoquin Valley Fever.

The longer one has Lyme, the harder it is to treat, so make that appointment for your husband--while I haven't beat it yet, Dr. Meress has been the only doc to get a reason why all of these things were beating me down--he's treating the cause, not the symptoms, and he also tries to use homeopathic, natural supplements & meds when possible.

I'm in the third month of treatment (a combo of antibiotics, vitamins, minerals, supplements and diet) and it isn't easy (over 70 pills a day!), and I have at least two months to go, but at least I now know what is wrong.

You can search for other Lyme literate docs at this site--www.ilads.org .

Also, the Canadian Lyme Disease Foundation is a wealth of Lyme info--www.canlyme.com .

And there's a southern Wisco/northern Illinois Lyme site, which may have doc info--www.sewill.org .

There is a wealth of info out there Amy (just type "Lyme disease" into Google or another search engine online), but be careful of those just trying to make a buck from your misery.

Best of luck to you & your husband Amy--you can always drop me an e-mail at badgerredbrian@aol.com if I can be of any more help.

Take care,
Brian
Amy - Wis Rapids wrote:
My husband has suffered with Lyme disease symptoms and has had several blood tests which come back negative. our family doctor will not treat my husband because the blood tests are negative. i have read several books that state a blood test can be negative but one can still have lyme disease. he has suffered with this for at least 3 years - pain in his neck, ear, joints, back, dizzy, visual problems. we visited a homorpaethic doctor in MAdison who confirmed my hubby had lyme disease and gave us some things that he did take and helped. has anyone seen or talked with this doctor from Fond du Lac - Dr. Steven Meress, Fox Valley Wellness Center.
Darlene Sauve

Cleveland, WI

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#19
Jul 15, 2009
 
My husband has many, many of the symptoms that these people have discribed for years. He is now under Doc care and just yesterday he was asked if there was parkenson desease in his family history?? The monster headaches, weakness and the chills and on and on. The Doc tested him yesterday for lyme and was negative. Today I met a lady and she told me the story about how she found out that she has had this desease for 10 years plus, that it took this wellness center, to find the problem. He had a tick not too long ago, and we thought that we got the whole thing out, BUT maybe not, also our dog was diagnoised with the lyme desease, so I just want to Thank everyone that has written in , and told their story, and explained their symtoms. I assure you that we will be checking into this center, and hopefully find our answer.
ex patient

Marengo, IL

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#20
Sep 1, 2009
 

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Barb wrote:
<quoted text>
Dr. Steven Meress, Fox Valley Wellness Center
THIS IS THE WORST LYME DOC IN THE WORLD!!!!! HE KNOWS ENOUGH TO FOOL YOU!! BARB WORKS IN HIS OFFICE!!HE WILL ROB YOU BLIND WITH HIS FEES AND OVER BILL YOU DOUBLE BILL YOU AND YOUR INSURANCE. ONLY WHEN YOU GET SICK OF PAYING $1000. A MONTH FOR SUPLAMENTS. HIS OFFICE STAFF ARE RUDE. NURSE'S HA ARE YOU KIDDING DID THEY TRAIN AT ED DEBEVICS. I AM WORRIED ABOUT ALL OF THE ELDERLY PEOPLE I SAW COME IN THERE WITH SUCH HOPE IN THERE EYE'S AND IV'S STUCK IN THERE POOR HANDS (THEY HAVE SUCH FRAGILE SKIN)FOR THERE "VITAMIN
DRIP" AND THERE POCKETS SO EMPTY WHEN THEY LEAVE.
THIS MAN HAS NO MORALS HE GOES AFTER ANYONE ANYTHING THAT PAYS THE BIG$$$$$ BUYER BE WERE

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