Hi moonbeam2, welcome!

I am sorry you have been sick for so long. Some people who have Lyme disease were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

Are upi cirremt;u beomg treated?

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you need a doctor recommendation, let me know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

It can take time, but with proper treatment you can get better.

Moonbeam, I'm in the same situation as you with the fibro/chronic fatigue and thinking there may be a Lyme connection. I saw the LLMD two weeks ago but the test results haven't come back yet. Be sure your Lyme & co-infections tests are done with IgeneX out of California.It will be interesting to see what you find out!

Fibromyalgia is one of the common misdiagnosis. Lyme is often called the "great imitator" and has many different faces.
My original complaints were exhaustion, no motivation, sleep all the time, achy. And I was diagnosed with depression. But never really got all that much better on meds. (Did counseling too and now I have great understanding of self but no change in fatigue) Then I started having more joint pain (had a back surgery and tendonitis maye gout bursitis etc... gut pain (took out appendix) chest pain - 2 days in hospital no diagnosis. but better after taking nitroglycerin.

My massage therapist thought I should explore fibromyalgia or chronic fatigue. But did not want to see yet another doctor.

We called it the "Julie factor" because I always had some health issue.

Decided to trust my daughters specialist(uncovered lead poisoning in her instead of assuming ADD) so I saw him to help me deal with "my depression" He was the first to ever mention the possability of Lyme disease and BINGO!

You may be surprised when you read the list of symptoms how many you have and you have dismissed them as age or life or stress or whatever...

I have been in treatment for 6 months and I am getting better.

I wanted to also back up the advice earlier...
Insist on an IGENEX test when you have it checked out.
You can go to their website to get info on testing and bring that info with you to doctor.
I'd also check into finding a Lyme Literate Doctor since diagnosis is so tricky and treatment is complex.

What I'm kinda worried about is all the work that goes into treating this illness. I know it sounds terrible, but the truth is I've tried to find solutions and help for the last 10 years. I've heard that insurance companies don't like to cover it, that doctors don't like to diagnose it and that the treatments take a long time to work. I don't know if I can spend the rest of my life on the phone to my insurance company or fighting with Dr.'s. I've already been through so much just getting my FMS diagnosed.

moonbeam2, I think we can all understand your frustrations. You have probably seen a zillion doctors who have not be able to help. It can really take a toll.

If you do have Lyme, the sooner you get treatment the better. It will not go away.

You deserve to feel better. Do not give up. The next move may be the right one.

Part of me is also scared. What if I DO have Lyme disease? It is like my whole world view is changing. I went from believing I had FMS a life-long illness I'd just have to live with--to the possibility that I may have something that is mostly curable! It is really impacting my life right now.

I'm new here too, and the doc thinks Lyme, only I believe I was bitten in Germany, and there is no test in the US for that strain. I want to talk more, but i feel so tired and achey that I'll get back with you all. God bless us all.

moonbeam,
Is you doctor going to do the bloodwork to do the western blott test to see if you have lyme? My regular MD sent in the test for me and it was confirmed I had lyme. Fortunate for me I was in the early stage and 3 weeks of Doxycyline 100MG twice a day cured me. Hang in there and have the test done to see if you have it. Since you may have had it for a long time it may take longer to cure but there is always hope. I will be praying for you to get a proper diagnosis as quickly as possible so you can determine your course of treatment. God Bless

moonbeam2, if you do have Lyme the good news is that it is treatable.

It may not be easy going through treatment and it can take time to recover, but it is definitely worth it.

Hi Angil, welcome!

How long have you been sick?
Even if you were bitten in Germany, it is worth getting tested.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme disease needs aggressive treatment. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Hi. From what I understand, the minimum treatment for an infection caught within two weeks of the bite (which is rare) should be six weeks of the proper dose antibiotic.

The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle.

If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

(No offense intended SmithNE)

Hi, I was told every thing from chronic fatigue to you name it, but in the end it was Lyme all the time and stupid docs refuse to wake up to the facts about Lyme. Even with a positive test results pcr and spect scan they still refuse to budge about va disability, they go by the bogus isda and cdc reports like its the bible. Insurance company's hire these monkeys that are pathetic in my opinion to write these guide lines so they don't have to pay for long term treatments. One day soon i hope they can't keep this a secret for too long and the big lie is going to catch up with them.

Anything short of Lyme Literate Medical Doctor you are wasting your time. I went to over 30 docs before I realized that they don't know anything about Lyme nor do I think they want too.My LLMD is fantastic and though I have a lot of Lyme damage because of all the incompetence at least I can walk now without the use of a crutch and pain is much less now, but I still have a long way to go.

If I had it to do all over again I would of sold everything I had Possessions and spent the money for a LLMD. 8 years later I have to beg for ssi and disability from VA. I posted some useful info over here at my web site under medical conditions.

http://johnnylight.proboards47.com/index.cgi