Sick Family,One positive 2 neg.

rtmc · 07-15-2005, 11:22 AM

Hi, I am new to the board and have a few questions. I believe I have lyme,but tested negative (positive for arth.) Symptoms started with fever and headache. Weeks later was getting numbness and tingling in hands on and off. A few weeks after that had severe joint pain and woke the next day looking like the elephant man, every joint in my body being swollen and had a rash. Not a bullseye rash but an odd looking one on my arm. Doctor agreed it could be lyme, tested me and put me on anti biotics. I was breastfeeding at the time and stopped as soon as I new. A few days after my symptoms got much worse then better. My son broke out with similiar rash and brought him in. They treated me like I was insane finally doing a blood test to appease me and Western Block came back positive and said his numbers were high. He is on omxycillin 21 days. I am still having joint pain (about 2 weeks into trreatment) and tired all the time (but can't sleep) After all this the question I guess I have is what should I do now? I still believe this is lyme. Husband has also been sick and tested neg. My son is 22 months, what should my concerns be long term for us both?
Sorry this is so long and thank you in advance!

deejavu · 07-15-2005, 11:42 AM

Hi Rtmc,

Welcome to the site. I am so sorry to hear that you and your family are sick.

Most doctors underestimate Lyme Disease and it's coinfections such as Ehrlichiosis, Babesiosis, Bartonella, and Mycoplasma.

I would have your doctor send your blood to a Lab called IgeneX located in Palo Alto, California to have you tested again. Local labs are NOT accurate for testing Lyme Disease and it's coinfections in my opinion. IgeneX has their own website.

I also had a Rash (not a bull's eye) and it took 5 years from going to doctor to doctor to finally get a diagnosis of Lyme and Ehrlichiosis. I never saw the tick or felt a bite.

Hopefully Ticker will be on later (she/he is our expert) and if you tell us where you are located, Ticker can give you names of a LLMD (Lyme Literate Medical Doctor).

It is believed that the lyme spirochete bacterias can be transmitted through breastfeeding and sexual intercourse.

Ticks are everywhere in the U.S. I have heard stories where a person who has tested positive for Lyme has said that their doctor stated "You don't have Lyme because this is Florida", well how wrong that doctor was.

I hope I was of some help and that you get the proper medical treatment,
Denise

ticker · 07-15-2005, 02:15 PM

Hi rtmc, welcome to the board!

I am sorry you and your family are sick. If you and your son still have rashes or if they come back, it is important to get photos of them. Place something near them, like a coin or ruler, before photographing to give size definition. Then you will have documentation of them if needed.

It is good that you pushed to have your son tested. It is tragic that the majority of the medical community does not realize how serious and prevalent Lyme and other tickborne illnesses are.

How long have you all been sick? Do you think you had Lyme when you were pregnant? What antibiotic are you taking and for how long? Your son is on three weeks right? Three weeks is never long enough treatment for Lyme. Lyme needs aggressive treatment. Under treated or untreated Lyme can be serious. The most important thing you and your family can do is see a Lyme knowledgeable doctor. No Lyme test is completely reliable. A knowledgeable doctor will consider your entire history and not rely solely on test results.

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

The best Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. I highly recommend that you call his office for advice. He sees patients from all over and has helped many children. If you tell me where you are located, I will tell you of the closest knowledgeable doctor to you that I know of.

Hang in there okay? Good help is available and you are not alone.

rtmc · 07-15-2005, 02:32 PM

hi deeja and ticker,
thanks for responding. I guess we are lucky enough to be in CT,but seem to be have very lyme ignorant DR. Infact I took my son to Children's Medical and the Dr. said if you test negative, then you don't have lyme no exceptions. I was told by 3 Dr.'s there is NO WAY possible that my son could get lyme from breast milk. I am finding out differently! We have awful insurance but I may call Dr. Jones. Should I push to retest myself? I think my Doctor would be willing to appease my insanity

I have been sick about 2 months treated for almost 3 weeks. I am almost done w/ my antibiotic. Thank you for your responses. I love the message board. I am learning so much!

ticker · 07-15-2005, 02:41 PM

Hi rtmc. I am glad you are in CT, there are excellent Lyme doctors there. Many people have to travel to see one. Lyme definitely can be passed through pregnancy and breastfeeding. I hope you will take your son to see Dr. Jones.

What antibiotic and dose are you taking? Three weeks of treatment is not long enough for your infection. An infection caught within two weeks of the bite needs a minimum of six weeks of the right dose antibiotic.

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 this 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.

You and your husband also need to see a knowledgeable doctor. Dr. Steven Phillips in Wilton comes very highly recommended. You need to be tested for the co-infections also. Babesiosis is prevalent in your area. It sounds like your infection is relatively early. Getting proper treatment early in the infection may reduce the chance of long-term complications. I hope you will all see a Lyme doctor as soon as possible so you do not waste valuable time.

I highly recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Keep us posted on your progress okay?