Hi Lorraine, welcome!

I think it is great you set up a chat :)

HOw long have you been sick? Are you being treated by a Lyme doctor? Were you tested for all the co-infections?

I hope you are doing well on your treatment.

Let me know when someone will be there and I will try to come by,I don't want to go on and talk to myself. It would get boring after awhile. :)
Deb

Maybe you all can help me with a question. Do you have any problems with crying spells for no reason and depression due to lyme? I've had lyme since last May and have just gone off the anti-biotic the doctor gave me (Zithromax) after taking it for 6 months. Am getting some symptoms back.

karen
My origianl misdiagnosis was depression. I was treated for 7 years for that (along with a ton of other problems)

Lyme also screws around with your hormones which could explain the crying.

You siad you are seeing a specialist. is this a LLMD (Lyme Literate MD)
Were you tested for co-infections?

Zithromax is not a drug as commonly used for Lyme. Rocephin/Biaxin/Flagyll/doxycycline are more common. there are others as well. most doctors use more than one.


If your symptoms are returning, you need more antibiotics.

thanks for setting up chat room. I guess we need to set times to meet there. i went all by myself and you could almost here the echo in the empty room.

Thanks for the info. Greatly appreciate it. I've gone to my primary care physician and an infectious disease doctor for treatment. Where can I find an LLMD doctor? Is there a website? I'm going to contact the infectious disease doctor this week to see if he will put me on one of the common drugs for lyme.

how about we check chat room on the hour. like 1,2,3,4,etc???????

Oh and check and see who in the community is on line and send out hugs when you are going to chat!

What are co-infections?

Hi karen617, welcome to the board!

Have you been diagnosed with Lyme? How long have you been sick?


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. 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 or send me a private message.

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.

Thank you so much for all of the information. It's a great help to me.

I've had lyme since May of 2007. It started with a virus and after I was better I started having problems getting out of bed,walking, being confused, so very tired all the time, numbness in my hands,arms & legs, migrane headaches, dizziness, etc. I went to my doctor and had some bloodwork done. Everything was negative including lyme. He put me on Zithromax and steroids because I could hardly walk at all and trying to get up out of a chair was so very impossible. My primary doctor sent me to a rheumotologist and he diagnosed me with fibromyalgia. I wasn't satisfied with that so I decided to go to an infectious disease specialist. My infectious disease doctor did not agree with the fibromyalgia diagnosis and believes that I do have the lyme disease even though my tests turned out negative. He had me get more bloodwork done but it came out negative again. Told him I really thought it was lyme. He took me off the steroids but kept me on the Zithromax for another three months. I was feeling a lot better. I've completed the medicine and am now starting to get some of the symptoms back. My hands are going numb again and I'm feeling muscle aches in my legs and arms. It's hard to get up out of the chair but once I start walking I'm o.k. The crying spells I have are o.k. for now as I started back on an anti-depressent the doctor gave me earlier this year.

Karen
get an llmd recommendation from lymebytes and i'd ask for the test by igenex lab. It is the most accurate.

Hi JulieGH,
Thanks. I will do that.

Has anyone been tested through the Igenex Lab and had the results be negative? Typically does the doctor check for all the co-infections too?

Hi Cheppie. A knowledgeable Lyme doctor should test for all the co-infections.

Not everyone who is tested at IgeneX tests positive.

Remember that no test for Lyme is completely reliable. On the Western Blot, the CDC requries several bands to be present for it to be considered positive; however, many eople who have Lyme do not have this many bands. Lyme doctors often focus on which bands are present. Some are specific for Lyme.

On the Western Blot, IgeneX uses more sensitive testing and list more bands.