This lyme thing is confusing to me as with most things these days.

Could someone please share your symptoms, my lyme test was negative but not sure what lab did it, I do know it wasn't Igenex.

How do I approach my doctor for futher testing when she says no lyme?

I have googled lyme symptoms but still uncertain as I seem to have more cfs symptoms than lyme, but have doubted my cfs symptoms from day one.

With lyme to you have good days then overdo and have bad weeks? Is this to a roller coaster disease.

One thing I do know I always feel so much better when taking and antibiotic but the doc says that is because it decreases my inflammation. I take the antibiotic for sinus infections and often.

Thanks as I am calling my doc today for an appointment.

greatgran.

http://www.anapsid.org/cnd/diagnosis/lyme-and-cfids.html

I was diagnosed with CFS before I got my lyme diagnosis. Fatigue is still my worst symptom.

Yes, when I overdo on good days I will have a bad week. This has improved greatly with my treatment, but it takes time to recover. I still have to be careful not to overdo.

Good luck with your doctor appointment.

dar

hi all,

im not told i have lyme,they wont test me,but im working on being tested,dont know from where, or who, as yet.

i have tiny tread like things in my stool/poo.while its in the toilet bowl.ive had this my whole life.

i still see them now,but they dont move like worms.or i cant see them moving,with them being thin.

i had blisters on my bottom whiping hand, for many years,but recently they have gone.

and the only new thing im eating is pumpkin seeds.two table spoon fulls in my quaker oats porridge.

im eating these seeds to kill blood and gut parasites.i think its lyme or malaria from any biting insect.

i read on a site five weeks ago, that pumpkin seeds have many good properties,and kill tape worms, and parasites.and makes finger/toe nail psoriasis go away,and it has indeed gone away in me.

so my gut feeling is i have malaria or lyme parasites in me.

and im mentioning it at my hospital appointment on may 20th.

ill let you know what happens in the future.

kind regards

fran

p.s

ive got my small dog on two tea spoon fulls of pumpkin seeds,he likes them.

for a large dog,id give it two table spoons of the pumpkin seeds.

my small dog is having a small amount of quaker oats porridge,for cholesterol.he likes that.

doesnt like cran juice though,but im working on it,not forcing him to drink it.

he seems well.doesnt now have anxiety when he sees fling things.he just seems not so stiff in his back legs,and is sleeping alot,,bless him.
[This Message was Edited on 05/10/2008]

I'm starting to explore the Lyme diagnosis myself. I've been diagnosed with CFS but I feel better on antibiotics always and it just doesn't "fit" for me with the whole EBV/HHV6 part. They keep telling me that antibiotics boost my immune system and that is why but I feel that I have an infection going on and am starting to question the whole CFS thing because of this. I am definintely getting worse and feel like life is passing me by and I can't live like this anymore. I've only been sick for 1.5 years, which I know compared to most people isn't very long, but for me, it seems like I can't remember feeling normal. I need to have my life back.

I am searching for a Lyme disease specialist right now so I can insist on the on the Western Blot. I don't think I can rest until I know for sure, because if I do indeed have Lyme, there could be hope of getting well. I don't take anything lying down, I'll tell you that! As sick as I am right now, I will not go down without a fight.

I don't have any answers to your Lyme questions, but from what I have been reading over the past few weeks, it surely seems to me that CFS and Lyme symptoms are very similiar.

Hopefully you'll get some good answers from the people on this board. Good luck!

same story here. Diagnosed with CFIDS for many years. Whenever i took abx i felt better. My CFIDS specialist was clueless about LYme and co's.

and yes, post-exertional malaise is a symptom, unfortunately of Lyme.

Glad you came to this board! good luck in your journey to wellness.

General info/symptoms of Lyme:

Lyme Disease ( commonly misspelled as Lime or Lymes ) symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite. <<< IMPORTANT <<<

Lyme Disease, SYMPTOMS & CHARACTERISTICS, a compilation of peer-reviewed literature reports

The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet areas go undetected). Treatment in this early stage is critical.

If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.



Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses.

If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit.

Lyme is epidemic in Canada/US period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

Free Canadian Lyme Disease Brochure (a computer file for you to print)

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup ) Symptoms of Lyme Disease The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular and spreading out (or generalized) Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss Headache, mild or severe, Seizures Pressure in Head, White Matter Lesions in Head (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety

Mental Capability

Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain

General Well-being

Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover



If this describes you, or someone you know, PLEASE,PLEASE get the proper testing for Lyme (currently the most accurate is Igenex ~ 2008). Post your results, or take them to a LLMD (lyme-literate Dr.). There are many places to get treatment, and advice.



My best to all,

Bunny

in another post by Kathy,

you might want to attend a screening of the documentary, "Under Our Skin".

Or, you can look at the trailers.
Here's a link: http://www.youtube.com/watch?v=sxWgS0XLVqw

www.ilads.org, www.lymepa.org, wwwllymediseaseassociation.org and www.canlyme.com are some good sites for lyme information. Lyme disease association has some free online videos you can watch.

Here is the best lyme disease guidelines I've found http://www.ilads.org/burrascano_0905.html

Also the www.lymepa.org has a good, easily understandable guidelines that you can download.

Best thing I've found for chronic lyme disease is to find a LLMD. ie Lyme literate MD They are usually members of ILADS ie International Lyme and Associated Disease Society members and are up on the latest treatments.

You need to find a LLMD Lyme Literate MD. As far as I know there are only two or three labs that specialize in diagnosing tick and other insect caused diseases such as lyme.
You mentioned Igenex which I think is the best. Then there is StonyBrook on Long Island and then MDL in NJ.

I believe www.ilads.org has a doctor find and so does www.lymediseaseassociation.org. Try finding an LLMD in your state

Did your doctor do a Western Blot test looking at all the bands as well as have you fill out a quuistionairre of your symptoms? I was so sick I had to be flown to Tampa, FL back in June 2006. Just because you have a negative lyme test does not mean you do not have lyme disease. Lyme is called the great immitator disease and is in the same family as syphilis only lyme has more in it's Genome. Even if you don't have an EM rash it still doesn't mean you don't have lyme disease. The percentages are very high of missed lyme disease unless you use Igenex and have a LLMD. I read different percentages of lyme cases missed using your health plan lab such as Lab Corp or Quest. Most labs don't test for all the bands, etc.

I was first diagnosed with CEBV, then CFS, fibromyalgia and Reiter's Syndrome and then Lyme. I responded pretty good to IV antibiotics, but got a C diff infection twice and had a blood clot in my PIC line so had to stop IV antibiotics. Then my primary care working with my LLMD in Tampa would not order the IV therapy so I've gotten worse. Cannot take oral antibiotics.

When you are on antibiotics do you get a herxheimer reaction? What antibiotics have you been on? YOu will see in Dr. B's guidelines that some antibiotics work much better than
others.

What state are you located in? Lyme is now in all 50 states or so I've read. It's really bad in the northeast and the northern california area, but I'm in Florida and got lyme disease here.

Some days are better than others, but you have to be careful and not overdo on a good day.

Did you ever have any type of rash?

Hope this helps you and others.

thank you so much for posting this, bunny. it has answered many questions for me, and has convinced me to have my doctor order the tests for me. I have many of these symptoms you've listed, and have felt Fibromyalgia is not the only thing wrong with me.
Lori

Hi,

This booklet about lyme by lymepa.org has a really good, detailed symptom checklist in the back...plus alot of really good basic info.......


http://www.lymepa.org/Basics2007v1.2Rev.pdf