new to lyme disease world - Lyme Disease Message Board

dogberry1 · 07-31-2007, 08:00 PM

Hello all,
Have recently been treated for Lyme but have not been diagnosed. A six inch diameter rash and some general malaaise was enough for a dose of antibiotics.Just got over a hellacious day of fever and chills but feel better today. I have questions concerning just how long the rash will last and what can I do to stop the itch. Also what can I expect for the near future and what should I look out for?

zandvoort · 07-31-2007, 08:06 PM

Hi dogberry- welcome to the board! I am afraid I was not diagnosed till later so I cannot help you but I wanted to respond and say hello. I am sure someone else will have answers.

ticker · 08-01-2007, 08:09 AM

Hi dogberry, welcome to the board!

Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme disease. The rash alone merits treatment. Most people will test negative early in the infection. Be sure to get photos of it. It is important documentation. Place something near it, like a coin or ruler, before photographing to give it size definition.

It is good your doctor recognized the rash. What meds and dose are you taking and for how long?

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 knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continous, aggressive treatment.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of 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. Were you tested for these?

It is a good idea to document your symptoms daily. One easy way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It sounds like your infection is early, which is good. Getting the proper treatment early in the infection may reduce the chance of long-term complications. Early treatment gives the best chance of a cure. I cannot stress this enough. It is hard to imagine how serious untreated or under-treated Lyme disease can be.

If you need a doctor recommendation, let us know.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

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. 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.

dogberry1 · 08-01-2007, 08:12 PM

Hi ticker,
Thank you for your reply. This is my first posting anywhere, on any site. Though I'm feeling better I'm not 100% and fatigue easily. The rash is amazing, hot to the touch and a deep red. Is this normal? Nothing about this disease seems normal. I have had only one really miserable day and I would not wish those symptoms upon anyone. As a surveyor I am in the woods and fields all the time and check myself dutifully--just missed that one time.
Do you know of any Lyme specialists in Maine? And is 2 weeks of Doxycycline 100mg enough to bounce this thing out?
Sorry too many questions; just looking for good info

ticker · 08-02-2007, 08:30 AM

Hi dogberry. Make sure you get photos of your rash.

Two weeks is not long enough treatment for Lyme disease. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of 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.

200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.

Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

I do not know of any Lyme doctors in Maine. Check to see if there are any support groups. They may be able to recommend a doctor. The closest Lyme doctor I know of is Dr. Don McNeel at the Seacoast Lyme Center in Hampton, NH. I hope you can see someone soon to get properly treated and tested for the co-infections. Again, early proper treatment is important.

There are some good repellents available that you can use when outside. I recommend the ones made by Repel. You can get them at Wal-mart in the sporting goods section. There is one for your clothes called Repel Perma One Clothing Gear. You spray your clothes and let them dry for at least two hourse before wearing them. If a tick even walks on them, it will die instantly. One application lasts up to two weeks or through five washings. You could use this on your work clothes. This is for your clothes only, you need a separate repellent for your skin. Repel makes one for the skin also.

When you come inside throw your clothes in the dryer on a high-heat setting for at least fifteen minutes. This will kill any ticks. Check yourself thoroughly. Ticks are tiny, so know you are looking for something very small. Check your scalp, behind ears, armpits, belly button, behind knees, top of legs, genital area etc. They often go in hard to see places.