posted
I have been an avid outdoorsman since I got my drivers license in 1976. In those early years I always slept in a tent or on the open ground.
I pulled off many ticks and often found them in the tent or sleeping bag. In the Late 80's I had the bullseye rash around the underwear band. I went to a local Doctor in Chicago who looked at it and asked "have you had any unusual sex lately?"
I was aware of lymes at the time because a fishing aquaintance was rumored to have almost died from a tick bite. I aked if he had heard of this sickness and he ducked the question. Having an aversion to Doctors and hospitals in general I never returned.
I have lived with chronic fatigue, joint, neck pain, and headaches ever since. I will turn fifty in a couple weeks and in the past 5 years my ability to concentrate and constant irritability and confusion have become hard to hide. I am robbed of almost all my memory. I can barely make this post without stopping to re-read several times.
I finally went to the emergency room 2 years ago when I got Bells Paulsy. I had just returned from a fishing trip in Upstate New York so the Doctor at Northwestern agreed to give me a Lymes test. I called them back for weeks afterwards to find out the results but it seemed to have got lost in the shuffle. When someone finally called me back it was negative.
Even Though the test came back negative I think I had or still have it. I have a lot of questions but I will ask just three.
1. Is it possible to walk around with this disease for 25 years and appear relatively healthy?
2. Would the test find lymes from 25-30 years ago?
3. Does anyone know of a good Doctor around Chicago who might take this seriously and take insurance?
My wife fears alzhiemers since my two Uncles both have it. (but those are the same 2 guys I fished with all the time.) Any help would be appreciated.
Posts: 3 | From Chicago | Registered: May 2008
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I am very tired..I don't know why I am not sleeping...so I don't know how helpful I will be.
Yes..it is very possible to have Lyme disease and walk around looking healthy..even for years. Lyme has a way of being dormant in our bodies and popping up when we least expect it.
Considering your testing was so long ago and your doctor was not an LLMD (short for..lyme literate medical doctor) your testing was probably not done at a reliable lab.
The best lab is called Igenex in CA. You will learn that as you go.
First things first though. You need to get yourself to a LLMD if you suspect you may have Lyme disease. If you want to find a doctor you can click on Seeking a doctor and post your city and state in the title. Others with that kind of knowledge will help you.
Welcome again and sorry I am too tired to help you more. Others will be along though. Keep posting and educate yourself here.
Good luck...kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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bettyg
Unregistered
posted
welcome; so glad you found us!!
i just sent you my newbie package of info plus!! you will be overwhelmed, but study the table of contents that is 60% done; SSDI disability info doesn't have table of contents done to date!
quoting you...
I have a lot of questions but I will ask just three.
1. Is it possible to walk around with this disease for 25 years and appear relatively healthy?
YES, 38 YR.; 34 YRS. MISDIAGNOSED BY 40-50 DRS!!! i believed them all like a fool!
2. Would the test find lymes from 25-30 years ago?
YES, hard to show "years" but if you test by IGENEX's western blot igm and igg; the protein bands will give you an idea!
3. Does anyone know of a good Doctor around Chicago who might take this seriously and take insurance?
PLEASE POST THIS IN SEEKING DR. section; we keep the 2 boards separate; several in chicago area, but good one in central wisc....reasonable.
you are going to find SLIM AND NONE taking insurance in midwest!!
you want ILADS lyme guidelines only; NOT IDSA guidelines!!!
My wife fears alzhiemers since my two Uncles both have it. (but those are the same 2 guys I fished with all the time.)
Any help would be appreciated........
my brother's wife died at 40 of early-onset alzheimer's so i know all about that one.
here's a quick test for you on alzheimer's ok!
draw a circle and now make it a clock showing the numbers only.
did you make a SMALL CLOCK; are the numbers in RIGHT PLACES, and not all on one side or lop-sidded in any way.
if you can still draw a clock with numbers in correct positions, it's not alzheimers! 1 trick i learned at iowa's annual alzheimer's converences i went to for 10 years helping sis-in-law and their 2 teen kids when she died 15 years ago.
hope this answers a little for you.
now post in SEEKING DR; many illinois/chicagoland members here!!
best wishes; we'll help to educate you/wife...both come here for support for a shoulder to cry on or just rant in support ok!!
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daise
Unregistered
posted
Hi fishnhunt,
Welcome!
I'm sorry you had Bell's palsy. Me too. Many cases of Bell's palsy are caused by Lyme. You'll find others here, as well.
You must be scared and frustrated. Angry. Very Ill. We hear you, here and we understand.
First, you remembered the bulls-eye 20 years ago. That you got a bulls-eye means that your body reacted to the Lyme pathogen. You are infected. Lyme doesn't disappear, though it can go into remission, only to raise it's ugly head again, if not treated right.
Sadly, some people here have suffered from chronic Lyme disease for decades.
To see examples of the variety of bulls-eye rashes, go to www.lymediseaseassociation.org. On the left menu, near the bottom, you'll find "photos" (or whatever it says!)
I had a huge bulls-eye, no symptoms, it laid quietly in my body for nine years and then SUDDENLY I had Bell's palsy, etc. Full-blown Lyme, all within the hour.
Are you ready for the initiation?
What test did you have? The ELISA (Lyme titers test) is a bogus test used by doctors and insurance companies to deny treatment.
You would think that an infectious disease doctor would help you. They don't--but for a handful. Most other conventional doctors do what IDSA (Infectious Disease Society of America) dictates, via their phony IDSA Guidelines.
IDSA represents your local infectious disease doctors.
Connecticut Attorney General Blumenthal found that the members of the IDSA who wrote the IDSA Guidelines are frauds. A settlement was reached May 1, 2008. Since then, IDSA is still lieing through their teeth--all the way to Congress.
We've got them on the run--those stinkers.
IDSA doctors are bought by big money interests. It's profits over patients.
Essentially, IDSA doctors have no experience treating Lyme patients. They brag they do have experience treating Lyme patients--however, they mistoke us not to be human, but rather stick-figures on paper.
They have blinded themselves to the difference.
AG Blumenthal, in effect, says that they picked and chose their medical papers/stick-figures to form their rotten guidelines.
IDSA says chronic Lyme disease does not exist. Ha!
The ILADS (International Lyme and Associated Diseases Society) doctors do treat us--at great risk to their licenses to practice. Who would do that? Hero doctors, that's who!
Lyme is epidemic across the US and Canada. It can be found on every continent, except antarctica.
Here in the US, the CDC (Centers for Disease Control) was commissioned by Congress to alert the public to infectious outbreaks. Has the CDC warned you? They are made-up of IDSA ducks, as well. Quack!
Sooner or later adults and children suffer terribly. Most conventional ducks make us think our signs and symptoms are "all in our heads." You must have been ignored and misdiagnosed by your share of ducks over the years.
I am not a doctor. I'm a patient. I'll copy your 3 questions here and address each one.
You wrote: "1. Is it possible to walk around with this disease for 25 years and appear relatively healthy?"
Yes, most look relatively healthy--except when in Bell's Palsy, like you and I were, for example! I guess that's part of the problem.
If our faces would just turn green with pink polka dots, maybe others might believe us when we say there is something wrong INSIDE. Off and on we talk about how most of us look fairly normal.
After you've had Lyme for a year, technically that is called chronic Lyme disease--neuroborreliosis--a brain infection of the Lyme pathogen.
It brings exhaustion and cognitive problems causing: short-term memory loss, fogginess, head pain (i.e. migraine in front, pain in the back of the head,) reading difficulties (big paragraphs are formidable,) dizziness and a slew of others.
Other signs and symptoms are individual to the patient as we're all different, such as arthritis, muscle pain, GI tract trouble and much more.
You wrote: "2. Would the test find lymes from 25-30 years ago?"
Most don't test positive even by the best test, the western blot (your blood sample must be shipped overnight only to IgeneX in Palo Alto CA.) Still, it's the gold standard of tests.
Recently Fry Labs (in Scottsdale AZ) is said to have tests that are better than western blot by IgeneX. I don't know.
Yes, testing may detect your Lyme. Testing is a problem. That's why Lyme disease is always a clinical diagnosis.
You wrote: "3. Does anyone know of a good Doctor around Chicago who might take this seriously and take insurance?"
We will gladly help you find a Lyme-literate MD (LLMD.) I suggest one that is also an ILADS doctor, and that you also state that.
Please go near the top of this page, to the left, and click "forum home." Then click "Seeking A Doctor." State that you live in Chicago, in the thread topic. We DO NOT POST LLMD names in full here, to protect our doctors.
As far as insurance, that can be complicated. Some insurance companies won't pay for Lyme treatment. May I suggest that you browse this site. DO CHECK-OUT the "General Forum." Don't lose hope, OK? Insurance can be complicated.
You also wrote: "My wife fears alzhiemers since my two Uncles both have it. (but those are the same 2 guys I fished with all the time.)Any help would be appreciated."
When chronic Lyme is in the brain of a 6 year old child, sometimes the child is diagnosed with behavioral problems/making things up/looking for attention. When Lyme is in the brain of a 35 year old, it's often diagnosed as depression.
A couple years ago when I was 54 my duck diagnosed ALL my signs and symptoms as menopause. When you're about 50 or older with chronic Lyme it's often called alzheimer's, to shut you up and scare you away.
Millions have chronic Lyme disease, just in the US.
In addition, ticks commonly inject other diseases, called coinfections, such as bartonella, babesia and ehrlichia. I've had dozens of ticks on me from living in Minnesota and Wisconsin. But I got the bulls-eye in Utah!
I'm tired. I need to get to bed! But here is essential reading: WWW.ilads.org, on the left click "Treatment Guidelines" and that brings you to 2 guides: On top is the ILADS Guidelines and below is Dr. Burrascano's 33 pages of tips for 2005 (including a 3 page assessment for chronic Lyme.) PRINT!
On this thread, BettyG will offer to email you the newbie package. It's HUGE and searchable, if you put it on your computer. For example, you'll find some insurance information and insurance tips! Lots of stuff.
Good book: Coping With Lyme Disease, by Denise Lang.
Recently published is a book with 80 Lyme patient stories from around the world, actually written by the patients themselves. "It's All In Your Head" Book 2, by PJ Langhoff, which may be a comfort for you.
Her Book 1 is about neuropsychiatric Lyme and more. Lyme disease can take many forms.
Again, welcome. Feel free to post other questions and to use the "search" near the top of any page.
If you are a veteran or active military, let me know, I have information. It's not real good, but still ...! To send me a private message, at the top of MY post, click the envelope icon with 2 people next to it.
Good night!
daise
PS--Hey, look at the others who jumped on this thread while I was posting. Lots of help!
I noticed someone just posted this about Minnesota:
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Ditto to what others have said above.
Blood tests for lyme are not considered diagnostic, because they miss too many (at least 50%) of positive cases. They are not very sensitive.
However, tick bites with a bulls-eye rash and symptoms means that you have lyme disease. You need to see a lyme literate medical doctor (llmd); most doctors are not lyme-literate.
Lyme and tick-borne diseases can cause all of the symptoms that you mention -- including memory issues, confusion and irritability.
I had bells palsey too, after years of untreated lyme.
Best wishes for your recovery. Many people have had late-stage lyme, become ill, and recovered their health through treatment. It may take a while -- I am near my second year of antibiotics for late stage lyme -- but it is worth it to lead a full life again!
Posts: 2557 | From home | Registered: Aug 2006
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posted
WOW! Thank-you all. Now I really suspect it. I lead a pretty normal but now sedate life. My friends say I need to get in shape. I wear out just playing 5 minutes with my 5 year old.
The physical ailments come and go and move from elbows, shoulders, hips, feet, and strangely just one knee. The neck has been the one consistant pain. They are Manageable.
It is the mental aspect that really concerns me. Although I did not mention depression in my post, someone else did. That coupled with the innability to focus are the real problem.
Drawing the Clock was a piece of cake. THANK-YOU!
I will ask about a doctor in the other section.
AGAIN THANK-YOU!
Posts: 3 | From Chicago | Registered: May 2008
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Dawnee
Unregistered
posted
Welcome to the board!
Since you had a bullseye rash then without a doubt you have lyme disease and likely a co-infection or two.
Yes, it's possibly to have had it for that long and not know it.
My LLMD thinks I have had Lyme Disease since I was 10 years old... I am 30 now. I only just got diagnosed 2 weeks ago. And yes, my Western Blot tests came back flaming positive even after all these years.
The reason your test came back negative at the hospital was probably because they used a standard ELISA test... which has proven to be most always wrong.
I started out with odd joint aches, especially my right knee as a child. I was told it was just growing pangs... but now at age 30 I still have the same pain. Also my hip, wrists, jaw...
And by the time I got to middle school I developed ADD and my grades started to suffer. I also started losing my eyesight. By the time I was 16 I was legally blind without glasses.
Now this year with muscle twitches, memory problems, limbs jerking whenever they feel like it...I've been to several doctors and NONE of them said a word about possible Lyme Disease. I was tested for Multiple Sclerosis..and when my MRIs came back negative I started doing my own research and became convinced about Lyme.
Found an LLMD and just got tested positive.
You will find a lot of people here who have similar experiences with you.
It sounds like you have finally found the right place and somebody here can PM you the name of a LLMD near you who will do PROPER testing.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by FishnHunt: and strangely just one knee.
This is very typical of Lyme ... I have the same thing. It's my left knee, though once in a blue moon my right one will hurt, then it will go away as quickly as it came.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
yep - dominant right knee here...funny every thing else on me is left guess my body was jealous!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Fish-
Seeing Bullseye is as Positive as it Gets - you have at least Lyme -No doubt -
Make Sure to read about Co Infections most people have them also -
Your story matches mine - - I saw Bullseye 20 yrs ago -
was able to work first ten yrs- Looked fine --felt Bad -- then went down hill -
Put ZERO faith in Test results - tests are Wildly Unrealizable - and get worse thew time -
Now after 3 yrs of treatment - I feel perty good most of the time- You will too --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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tailz
Unregistered
posted
I worry about Alzheimer's, too (my grandmother died of it), and yeah, Lyme or one of these bugs are definitely part of the mix.
But I would definitely look into electrosensitivity/microwave sickness, too, and avoid iron like the plague.
I'm avoiding iron and hoping my brain doesn't fry of infection and iron toxicity too badly while wireless technology continues to grow.
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Alv
Unregistered
posted
I never saw a bulls eye rash.
But when I was 7 I was in IV in hospital .??? No body knopws the reason.I would complein about headaches on the 5 th grade and my right knee would crack.
Anyway at age 19 I recall a very high fever and a numbnees and limping on the right knee.
When I was 23 I felt a terrible migrane headache and I was told I have migranes.
Age 26 I had another knee swelling ( guess what reinfected for sure with bart maybe another stain ) and my right hip and jaw start hurting .
Age 28 fatigue neck pain and heavy legs.Started having insomnia and hard time to memorize things.
Age 31 reinfected , stubbing pain in my eyes, right hip and right arm start hurting .Fingers would swellow with no reason and would come and go.Horrible muscle pain .
Migranes and vertigo now and than all provoked and came up strong with the death of my mother.( probably reinfected) and BINGO , bells palsy , tremendous pain on my right arm almost paralized on my right hand .
Numbness and heat came from head to toe in sept 2005 .That my memory ( lyme became active ) -----whoooo sharp pain in my spine and my liver and could not breath ...brain swelling and you name it.
Every symptom of lyme and the coinfections .
NONE of the docs I saw oversee and here had no clue.I had to selfdiagnose myself after the stroke and lost all 10 of my mollars.
I was lucky to get positive IGENEX( after many supplements and boosting my immune sysstem ) so I had provoced the producing of anibodies -maybe the antibiotics that I got for the jaw and teeth before the test did the trick also.
Without what I did I doubt I had a positive as my WBC was low since 2000 and I have not head a fever since 2003 -my immune system has been shut down since than.
Now 1 year after I am not afraid that I will die anymore.Still far from beeing fully function.
Not working but doing some things .
Lucky me had found a dr LLMD that does muscle testing.All test came back negative for co-infections.
I had them all-7 of them and late stage NEUROLYME.
I know it went neuro since that FLU 2003 that turned every thing upside down and nobody was beiliving me.In 2005 Bartonella -( BLO ) made every symtoms so neuro could not recognized myself.
WELL I LOOKED FINE based on drs .
If I had cought it early I would have had less damages.
I have lost my hearing on high pitches! My bells pasly is gone now after 1 year of treatment!
So far Mucoplasma fementas, Ehrlichia and Babesia is in remission and viruses are not active. Only BLO and LYME -shows still strong.
Find a good LLMD -do not hesitate and delay!
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posted
Was treated for Lyme with biaxcin some 15 years back. He pronounced me cured according to the ELISA and Western Blot tests. However, symptoms persisted. In 2005 I found a Dr. in MS who treated me with Bicillin C/R. Much of the symptoms have receded. Unfortunately, Dr Furr was ederly and has since passed. He had treated quite a lot of Lyme patients on the MS Gulf Coast. I also had taken shots from another local Dr. They were very painful. You really need to get someone knows how to give a proper shot and uses the Bicillin CR 900/300. Good luck. peter
Posts: 5 | From Gulfport, MS | Registered: May 2008
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bettyg
Unregistered
posted
...
hunt, got this in my today's chronic fatigue newsletter and thought of you, so will post it here for you/others !
Post Your Questions About Alzheimer's, 'Brain Fog' & Cognitive Health ProHealth will be offering a Live Chat Q&A with Vincent Fortanasce, MD, a world-renowned neurologist and author of The ANTI-Alzheimer's Prescription, due out this summer. Submit your questions now for advance consideration.
NFA Invites International Applications NOW for 75 Scholarships to the 2008 Leaders Against Pain Training Seminar - 4 days in Washington
Important Role for Vitamin D in the Body's Defenses Against Cancer
Blood pressure measures often improperly performed, inaccurate
RESEARCH ABSTRACTS More new abstracts
ME/CFS advice to primary care doctors - "Don't assume it's depression" A model to help PC doctors diagnose ME/CFS - full text article is free.
ME/CFS gene-expression subtype evidence firms up International research led by Dr. Jonathan Kerr confirms & further details gene-expression markers for ME/CFS & distinct subtypes. Full text available free.
Most ME/CFS cases under age 12 meet adult criteria Large sample from UK pediatric clinic supports comparisons by age.
'Selective' antidepressants may often initiate or exacerbate RLS
Study suggests ME/CFS subsets with different sleep patterns
� Eliminating allergies helped � Support group contact info � Netherlands doing similar study � Fish oil & muscle recovery time � I just want to feel better
Q & A Session
� Is ME/CFS genetic? � Report on international symposium? � Information on Sarcoidosis? � Help for brain fog? � Help to find a good doctor?
Questions? Comments? Please share your thoughts with us! Send us a letter
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