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Lyme Disease Message Board


Lyme Disease Board Index


Hi garrisonwa, welcome to the board!

I am sorry your daughter has Lyme, but it is good she has been diagnosed. How long do you think she has 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

It is very important to have your daughter evaluated by a Lyme knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of 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. Yes, it is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

The best Lyme pediatrician in the country is Dr. Chalres Ray Jones in New Haven, CT. He sees patients from all over, and he has helped many children. I highly recommend calling his office for advice.

How long is the IV prescribed for? There is a great sleeve you can buy to cover the PICC so she can shower without getting it wet. It is called a Mid-Arm Protector, and you can get it at Brown Medical.

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.

If possible, it is a good idea to document your daughter's symptoms daily. One easy way to do this is to list the three main symptoms she has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when her herxes occur and how she is responding to the meds.

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.

Hang in there okay? I hope your daughter feels better soon.
Hi scrmomof2, welcome to the board!

I am sorry your son has Lyme, but it is good he has been diagnosed. How long has he been sick? What med is he infusing? How long has it been prescribed for?

It is very important for your son to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of 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. Has he been tested for these?

The best and only Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. I highly recommend calling his office for advice.

Getting the proper treatment early in the infection may reduce the chance of long-term complications. Early treatment gives the best chance for a cure.

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 a good idea to document your son's 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 his herxes occur and how he is responding to the meds.

You can order the Mid-Arm Protector at Brown Medical. It really is helpful.

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.

Hang in there okay? Good help is available. With proper treatment, your son can get better. You are a good mother!
garrisonwa, E-G-A-D-S! Too much going on!

Did you save the ticks you found on your daughter? How did you remove them? It is good you saved the one you found on yourself. It can be tested for disease at IgeneX Lab in Palo Alto, CA. I highly recommend having it tested. I believe it is more reliable than a blood test at this point.

Two weeks of treatment is never long enough. 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.

Please call Dr. Charles Ray Jones in New Haven, CT. He is the best and only Lyme pediatrician in the country. It is crucial that your daughter gets the proper treatment now or she could have long-term complications. She also needs to be tested for all the co-infections. I am not familiar what dose is proper for a child. I would ask Dr. Jones' office about this also.

If your other daughter is going to be treated, it should be for at least six weeks with the proper dose antibiotic.
Hi amrahjil388, welcome to the board!

I am sorry you went through this, it had to be very scary. Were you given oral antibiotics after the IV?

Please be aware that three weeks of treatment is not long enough for Lyme disease. Untreated or under-treated Lyme disease can be seriouse. 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.

Sometimes people can keep the symptoms at bay until their immune system become stressed in some way (illness, accident, divorce, etc.) then symptoms emerge.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of 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 ever tested for these?

You may want to see a Lyme knowldegeable doctor and be evaluated for these to be on the safe side.





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