To be honest it seems a little scary.... I really wonder how well I will tolerate it. My ID specialist wants to give this a try.
I have potential Lyme.... or potential MS, or potential something (the doctors are inbetween diagnoses at the moment).
Interestingly, my symptoms seemed to improve quite well with penicillin; I'm not too sure if they will anymore? Any of you have a chronic sore throat and crippling fatigue before neurological symptoms? Just curious?
How long have you had Lyme disease? Biaxin and Plaquenil are often prescribed. It is my understanding that Plaquenil is prescribed with Biaxin because it enables the Biaxin to work more effectively.
What doses of each are you on? Lyme needs much more aggressive treatment than many infections. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Often, infectious disease doctors are not the best to see. That is not to say the one you are seeing is not knowledgeable.
Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and 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. Have you been tested for these?
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 symptoms daily. One 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 is also important to learn as much as possible. I recommend reading "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner, and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many doctors follow his protocols.
If you need a doctor recommendation for your area, let us know.
I've taken Biaxin in conjunction with other antibiotics for Lyme/Ehrlichiosis but not the other drug you mention. For much of my treatment my doctor used 2 antibiotics for periods of 4 months, changing each on alternating 2 month cycles...halfway thru a 4 month regimen of one, she'd switch the other. The drugs utilized were doxicillin, amoxicillin, biaxin, ceftin and a couple others....I'd have to consult my records. Max dosage was 1000mg 2X a day of each (4g total) and that lasted 6 months. For the rest of the treatment, the dosage was half that amount. My last Igenex tests were negative for both diseases & I've been released...feeling a lot better...it must have worked & I survived the treatment.
I am glad to hear you are better. Make sure you do not have any lingering symtpoms. If you do, continue treatment until you are symptom free plus at least two months longer.
I take amox. and Plaquenil..I have no idea how to spell that. I started the Plaquenil about 8 months ago. They where not sure if I had lyme at that point. They were calling it "Undifferential connective tissue disease". Since then we have found out it is lyme but I continue to take it. It helps relieve my fatigue and my knee pain.
Did your doctor explain to you that it takes several months to have improvement with it. You might improve a bit but it has to be built up to have it's full potential. I didn't have any problems with it besides a little upset stomach for the first week or two. I am on the same dosage of it as you are.
Your supposed to have routine eye exams done with it because of potential vision problems. Every doctor I have spoke to about this said your chance are less than one in a million to develop that problem. I just keep my annual eye exams.
I hope it works out for you. Remember not to get discouraged if you don't notice a difference for quite awhile.
