I am having a frustrating time getting diagnosed with Lyme. This all started in August of 2007 when I began to have severe flu like symptoms. For four days every joint in my body ached, had a fever, I then began to lose strength in both my arms to the point I couldn't button my pants, or even pick up my infant son.
Well I went to the doctor who said he thought it was MS and began doing all of the tests associated with MS, MRI, Nerve conductor tests and so on. This doctor was not my regular doctor so I went and saw her. She imidiatley thought Lyme and or west nile virus and began me on a two week regiment of antibiodics. However my Lyme test came back negative. So they began looking hard into MS and others. Well its been six months and I still have no diagnosis. I have severe pain in both my knees and hips now. I have began to get severe migan headaches, the weekness in my right arm has returned however i still have severe weekness in my left arm. My wife says I am acting "strange" I cant concentrate. I have been very depressed which I have never been my entire life.
I have been to two neurologists one that is an MS specialist. One says MS and the other says not MS. My lumbar puncture, and several other tests have come back as "high end of normal however not yet abnormal" I have no lesions on the MRI and have no answers. I am a police officer and have been on light duty for six months. I still have no answers and have recieved no other treatment.
After dooing my own research I think my symptoms match Lyme however I have no doctors looking at it right now.
Am I crazy or does this souond like Lyme?
Sorry so long thanks for listening.
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to the board.
I'm so sorry to hear your story. Your symptoms can definitely be Lyme and you came to the right place to start finding help.
You should post in the seeking doctors forum and somebody will recommend a doctor who is knowledgeable in Lyme. (Click "Questions and Discussion" link above and then you will have the list of forums).
We use a term called LLMD which stands for Lyme Literate Medical Doctor. It is a term used to describe doctors who are very experienced in treating Lyme and chronic Lyme.
If you've done research, you probably already know that a negative test means nothing. So don't stop pushing for an answer until you have an answer.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
My sister-in-law saw one of the top neurologists in Boston and he diagnosed her with an early onset of MS (she was in her late 20's at the time).
WRONG. It was Lyme. My Mom got her to a Lyme Literate Doctor and she tested positive, got on abx and years later, is now running marathons.
MS, uh so NOT!
Goto seeking doctor section and you can find LLMD's in your area. Seeing anything BUT a Lyme Literate Doctor will be a wasted of your time and money.
Do not settle for this diagnosis...trust your gut.
posted
You're a police officer? Do you use radar? Maybe you have microwave sickness like I do? My Lyme flares upon exposure to electromagnetic and microwave fields (such as radar).
posted
only an LLMD can diagnose lyme correctly. most other doctors (primaries, neurologists, infectious disease) do not know enough about lyme and are not going to diagnose it.
many people are misdiagnosed even with the bullseye rash and positive tests. most doctors are very reluctant to diagnose lyme and even more reluctant to treat it
MS is a very controversial diagnosis. there is really no "test" for it, the diagnosis is based on symtoms and some signs like MRI's NCS EMG and such which can also be symptoms of lyme
think of it this way. things like MS, chronic fatigue syndrome, fibromyalgia, ALS, etc are not "diseases" they are groups of SYMPTOMS.
the CAUSE of these symptoms is unknown, and there may be many causes (bacteria, viruses, toxins, genetic defects, etc)
the goal of most doctors is to just treat the SYMTPTOMS and not find the cause of the disease. treating the symptoms does not cure the disease, it just makes you feel better.
finding the CAUSE of the symptoms, and treating that is how to get cured. most people need to do both (treat the symptoms and the cause)
Posts: 615 | From maryland | Registered: Oct 2007
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posted
****"My lumbar puncture, and several other tests have come back as "high end of normal however not yet abnormal"****
High end of normal for WHAT??? Did they say?? ==============================================
Please see a Lyme specialist right away to rule it out or in.
I wish I had my list of lyme symptoms here....anyone have that??
I'm in the middle of moving and my desktop computer is in the new apartment. It contains tons of files I wish I could give you.
In the meantime, go to Medical Questions and look for Treepatrol's Newbie Links...It's in the top 10 posts. He should have a list of lyme symptoms there.
You probably have other symptoms of lyme that you're not realizing are Lyme. What you've listed so far is definitely headed in the direction of lyme....especially the pain.
READ, READ, READ ALL YOU CAN ON THIS SITE!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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When the doctor said my tests where at the high end of normal he was speaking in reference to the things like protein levels and what ever those bands are (cant think of the exact term). He stated they were at normal levels however they were the high end of normal and "about to hit the abnormal levels". He wasn't very helpful and told me to see him in two months for another MRI.
I have since went to the Cleveland Clinic to an "MS Specialist". He stated he doesn't think its MS and doesn't know what it is. He suggested it was a severe virus that has inbetted itself in the muscle of arm. Who knows he didnt even touch on the buring in the knees and hips. So here I sit wondering whats next. My work is gettng restless and wants me either back on patrol or atleast answers. Enough complaining on my part. I will find a lyme specialist.
My main concern is I haven't been getting anything for this and I fear the longer this takes the more damage that could be taking place in my body.
Thanks for all the info
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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posted
If it's lyme, YES...the damage will continue. Go to Seeking a Doctor and begin your search!!!
Even the "best" hospitals have NO CLUE when it comes to diagnosing Lyme disease. The truth is, they don't WANT to diagnose it!!!
Read some more!
.....Did you mean you had bands show up on the Lyme test??? Can you get a copy of that test??
If you get a copy, post the bands here.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
CanLyme has a good site also for Lyme symptoms.
If you have had or currently have any of those symptoms check them off.
You really do need to see a Lyme Literate Medical Doctor.
Igenex in Ca. is also the lab I would recommend for Tick Borne Diseases.
Hang in there. You don't sound crazy....You sound like one of us.
Welcome to the board.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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daise
Unregistered
posted
Hi 2332,
I agree with all of the above comments. Yes, we all know how scary this is, but hang-in there, OK?
The first thing I was checked for was MS, with an MRI.
I am a vet, but the VA refused to diagnose and treat me for Lyme. That's their nationwide policy. I fought for and got Medicaid and I got lucky and chose a good Medicaid health insurance company. It is a not-for-profit company. I got a nurse case manager.
However, first, I had to contact my state insurance board to get insurance people to listen to me and I found the needle in a haystack--an insurance executive who was very familiar with Lyme.
That's why I was given a nurse case manager, also called a care coordinator. They arrange time-consuming things like arranging for a complicated blood draw for western blot (shipped to IgeneX in Palo Alto, CA.) You or the nurse or whomever need to order the free testing kit and you and the blood lab who does the blood draw must follow the directions carefully.
Conventional doc offices just rarely spend time on coordinating such things. The overwhelming majority of conventional docs are scared to attempt diagnosis of Lyme. They're robot docs who are only interested in their own, easy way to make profits.
I tested negative by western blot, 3 times. That's common. That's why Lyme is always a clinical diagnosis.
What got my meds paid for was a positive result on a CD57 test (blood drawn locally and shipped to LabCorp in Dallas TX,) a test of your immune system and how far worn-down it is from fighting the Lyme pathogen. However, the CD57 is for those who have had signs and symptoms for a year or more.
My nurse case manager coordinated all testing and coordinated consultation with a genuine LLMD who is an ILADS physician. These are our hero docs! The nurse may ask for an LLMDs name, so be ready with a good name. Some LLMD's claim to prescribe antibiotics, however, they do that little and want to sell you other therapies: beware!
This doctor faxed an initial one year treatment plan. It took time for the formulary department of the insurance company to approve the meds, but they did! The executive doctor with the insurance company went to formulary in person, each time, to get approval. How about that! Treatment was administered locally by my PCP (family doc) and my nurse case manager arranged home health care for IV Rocephen, etc.
That was a year and a half ago, I have Medicare now (with Social Security Disability) and a local Lyme doc who takes Medicare. I am miles better--MILES! I've taken antibiotics for a year and a half, with more in my future. I've been diagnosed with bartonella and probably babesiosis--those are co-infections that can also be injected by ticks.
Essential is: www.ilads.org, On the left menu click "Treatment Guidelines," and print-out Dr. Burrascano's 33 pages of tips for 2005.
Fry Lab in Arizona is "said" to have more sensitive testing than western blots at IgeneX. I have heard good things about it, however, these are general things. I don't know if it's a better testing method or not.
posted
welcome and so glad you found us for a wealth of info, llmd names, a shoulder to cry on going thru this hell to get diagnosis and treatments!
here's the symptoms list lymetoo was discussing:
Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella.
Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema.
BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes.
X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
now, i'm sending you also my lengthy NEWBIE PACKAGE of info plus by private message!
pms can be found on left side under HELLO and in my profile!
you're in for a bumpty and expensive lyme journey, and you will be discovering the LYME CONTROVERSIES OF IDSA, infectious drs., and our GOOD DRS., IDAS, intl. disease associated society.
i always get these abbreviations screwed up; uffda!
treepatrol's archive of links is also shown in my package i'm sendign you. good luck!
we just had another person in your position join us from another state too!
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-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi OH's 2332,
You had the "flu"....in August. That's a big hint. True flu doesn't usually occur in the summer.
What had you been doing the month preceeding your flu-like illness? Were you outside, working in the yard, walking in a wooded area, walking the dog or riding horses?
Do you remember any tick bites or rashes that you thought were not important?
You'll be so relieved to have a LLMD..someone smart enough to put all your symptoms together and know how to interpret them.
Welcom to Lymenet. The learning curve is steep, but you'll learn fast.
You may want to contact the Ohio Department of Health, Epidemiology department. Get the Lyme case counts for your state. Each county will have a # of cases...they have records back to 1991 at least.
Any county with 2 or more cases is considered an endemic county by the CDC. You'll be very surprised at the results you find. Your physicians probably haven't bothered learning this information.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
Thanks for all the responses. About a month prior to the flu symptoms I was at a weekend long getaway in a cabin in the hills of southern ohio. I am also a police officer and have been in the woods several times looking for people shooting firearms after a complaint. So I guess it is a real posibility. I will contact the Ohio Department of Health.
Thanks for the info
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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quote:Originally posted by 2332: About a month prior to the flu symptoms I was at a weekend long getaway in a cabin in the hills of southern ohio. BINGO!!
I am also a police officer and have been in the woods several times looking for people shooting firearms after a complaint. So I guess it is a real posibility. I will contact the Ohio Department of Health. VERY real! Dept of Health??? Don't expect them to know a single thing about Lyme or coinfections. They will probably tell you there's no Lyme in Ohio!! Thanks for the info [/QB]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've sent you a private message on this site. I wish you the best.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Please, when you find a Lyme specialist get a referral from this board. Don't just go to a doctor who claims to be a Lyme specialist.
Most doctors you find on your own who say they specialize in Lyme will be infectious disease specialists who only treat acute Lyme right after infection. The theory they often follow is that Lyme is not chronic, they give a maximum of 4 weeks of treatment, and then diagnose you with Post-Lyme Syndrome.
However, many of us here have either benefited, or know people who have benefited, from longterm treatment. There is plenty of research showing Lyme is chronic and can remain after 4 weeks of antibiotics if not eradicated when first infected.
Good luck. Feel free to come back and ask more questions.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I just want to point out that all cases are not reported to the CDC. I know at least 6 people in the Cincinnati/Dayton area with Lyme Disease. I contracted it in Montgomery County, which is considered "no risk". My case was not reported.
I contacted the CDC myself because my local doctor would not report it. They did not care.
Getting sick with 'the flu' after a weekend getaway in the hills of southern Ohio makes Lyme highly suspicious.
Unfortunately, we Ohioans have to travel to see an LLMD. I go to NY. I only had to physically go there three times per year, as I had blood work done locally and phone consultations, so it's not as bad as it sounds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Goofy, I'm glad someone from Ohio is chiming in here. I've sent her a PM, to tell my story of rheumie early on (3 mths into the illness from hell) who told me I just had a virus and as soon as my immune system killed it, all my pain would be gone.
Such medical training? I was really impressed. He took all the blood test he could think of and everything came back okay. I wonder why I was running a fever of 102 on the afternoon that I seen him? After all this fever had been coming and going, esp. afternoons for three months?
My primary doctor had already given me all the abx that I needed to eliminate the lyme dx that my primary doctor had dx 10 days after onset illness from hell. Pain naturally must come with viral infections?
After all this was the best rheumie doctor in this big city? Not that big a city, but 25th largest in USA?
This specialist sent me on my merry way. He just didn't know how to help me. It wasn't a month later that I went back to my primary doc an Internist and told him "I still have lyme disease or something like it. Put me back on abx. I want to do such & such abx long term. My research says pretty good results with this abx."
My Internist did as I requested and agreed he was pretty sure it was lyme from the beginning, but the positive Epstein Barr Virus (adult mono) had made me hopeful that I was dealing with a virus instead of the lyme bacteria.
My Internist dx me Chronic Lyme Disease since that day. That was Dec 1999. Three years later worth of abx, different doses, combos of abx, IV rocephin, LLMD for 2 yrs, different treatments and now it's 5 yrs later......
I'm still Chronic Lyme Disease. I'm disabled from working, but I'm no longer dying a slow death. I can do life most days. Some days I can't do life. Some days all I can do is some responses to others on this site for a couple hours and fix dinner.
Some days I don't have the energy to respond to anyone or even read e-mail. Yesterday after some body work done on me, I had the energy and ability to stop at an arts and crafts store and bargain hunt to an hour.
I've made progress in doing everything I've done the last 5 years. But I'm still in the process. I pick and choice what's important and what I need to do in life.
I've had at least six embedded deer or nymph ticks and two major spider bites since summer 05. These have taken a toll on me due to unknown positively knowing what lyme & company they added to my already stressed immune system.
Overall, I call myself blessed. I will not stop until I find the answers to my questions and I have all of my life back. Life to me is HEALTH.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You need a LLMD Thats a Dr that knows lyme and how to treat it and sadly thats not going to be a a infectious disease specialist. You can post for a LLMD in the Dr section.
-------------------- 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.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I agree Tree. When you suspect or know it's lyme, your first step is to find a LLMD as quickly as possible. Sometimes that takes a month or 6 months to get an appt. In the meantime...
I would got to my primary doctor and tell him you are wise enough to know when there is something seriously going on in your body. You know when there is something that just doesn't seem right.
You know when every day seems to another sx another pain and things just don't feel right. You have to explain to this doctor that you know your body, you know something is wrong and you are frigntened for your well being.
You will also need to tell them that you will not stop searching until you successfully eliminated whatever is attacking your body. You should do all of this in a way that makes this doctor feel he is there to help you and be apart of you and your recovery.
Don't let them tell you that one pill or one rx is going to make it all better. Keep notes daily of every little thing different that is happening to your body. Keep a sx list. Let the doctor try to explain all this unknown sx that is happening to you.
They will try to explain it away. Some of them will try to fake a good diagnosis. Some of them will tell you the truth and say something like, I just don't know? Most of them will try to pass you onto a so called specialists.
Usually a specialists will be the majority of your sx fall. Infectious disease, rheumie, or even a shrink? You name it they will find someone to send you to.
That's where the real frustrations begin. Here's this specialists who knows infectious diseases, who knows arthritis, who knows someone depressed when they meet them the first time. After all you are almost crying while you tell your experience the last few months.
You can barely keep up with work, or can't work at all. Everyday there is thing after thing going wrong with the body you knew just a few months ago.
My first trip to a so called infectious disease doctor was a horrible experience. He actually laughed when I told him my primary doctors early dx. Wanted to know where in the world that doctor came up with that dx.
This ID actually started drilling me across from his desk. He made me feel stupid and he made my primary doctor out to be an idiot. What compassion that pompus specialists had?
He then told me to go to the exam room and he did some things to me. Looked at my throat, in my nose, in my ear, tapped on my knees, felt my hands, felt my glands. Told me to do a few things.
Okay, he's got it figured out in just 15 minutes of meeting me. No more test needed in his office, he told me to go to my doctor and have a vaginal test done for Toxic Shock Syndrome. He believed it to be TSS, after all I was on my period and using tampons when the illness from hell hit me.
There is a reason that symptom came up. Regardless, the vaginal smear came back negative for Toxic Shock. No s*#! Sherlock. Toxic shock is staph infection gone wild in young women (teenagers) mis-using tampons years ago. Believe me I wasn't anywhere close to young and mis-using tampons.
Today, I know it might have been a staph infection going on in my body. But he wasn't going to find it in my vagina. I know today that lyme disease isn't the only present a tick or vector leaves in you when it spills it's gut into your system.
I'm being mean spirited about ID ducks and specialists, I know. I was fortunate enough to have a primary doctor that was smart enough to know enough lyme to suspect it early on.
I was very lucky to have this doctor who regardless what the labs said, knew that I was one sick woman. He was lyme literate enough to know to throw the kitchen sink at me right away.
But I got stuck with two specialists that didn't have a clue about lyme & company in '99. I bet today they still are clueless and that makes me angry.
Some more poor souls are going to come in their office with this strange symptoms that just keep happening in '08 and they are still clueless today. You bet I'm angry!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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