Hi momo3, welcome to the board!
I am sorry you have been sick for so long. Below is a Lyme disease symptom list. You can have any combination of symptoms.
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 Many doctors do not understand Lyme and treat with outdated protocols.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.
Although the CDC requires several bands to show on the Western Blot, many people who have Lyme do not have this many bands present. Lyme doctors often look at which bands are positive, some are specific for Lyme. Band 41 is often the first to show in an infection. Bands 23-25, 31, 34, and 39 are Lyme specific bands. I believe band 83-93 is also a Lyme specific band.
I am sorry your children also have symptoms. Lyme disease can be passed through pregnancy and breastfeeding. If you need a doctor recommendation, you can email me at firstname.lastname@example.org Infectious disease doctors are not usually the best to see for tick-borne diseases unless they specialize in them.
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 books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.
Hang in there okay?
Hi saxmar. I am sorry your daughter may have Lyme.
While the cat's claw may give a reaction, I don't think that a lack of reaction means that Lyme is not present. As we all know, this disease affects everyone differently. What works for some people may not work for others.
Does the doctor want her to have testing done before she starts anything?
Post Edited (mamallama) : 3/24/2009 9:42:48 PM (GMT-6)
I would be so grateful for any help and advice you can give. There must be a way for us to private message on this site. I need to check into that and will get back to you.
The Igenex lab is a Lyme specialty lab in California. You do need a doctors order to get the test. You can call them and order the kit yourself to bring to your doctor if they are not familiar. The advantage of this test is it is more specific than a standard doctors kit test. It lists the bands seperately as well as the intensity of the bands. Myself and my husband did get our positive results with the standard doctor kit. Not CDC positive but specific bands that warranted treatment. My son as I stated has had 2 indeterminate Igenex tests. I personally wish I would have started with him on the standard doctor kit and then followed up with the Igenex because now my Lyme illiterate family doctor is refusing to do another test because in her opinion the indeterminate tests are considered negative... I know that this is just not the case so now I have to wait to get him in to see a LLMD that will either order another test or treat based on symptoms...
I guess I am still wondering the same as you as to how common congenital lyme is. When you read about it you mostly find that these babies are very sick... Mine are not but they all have symptoms, mostly intermittent, and other than my oldests concentration, comprehension, learning issues and neck pain can be written off as normal... What concerns me is my sypmtoms were not necessarily typical... Not my husbands either and I would prefer to find out if they have this while they are still young and treatment is much more successful...
I'm guessing to get to the bottom of this I will have to see a true LLMD. I have been seeing a recommended Infectious disease specialist but he is still the type that will not even see a patient without a positive test result and so far his advice to my family doctor has been detrimental to my search for answers.
Good luck to you, feel free to contact me anytime :)