Becoming your own advocate/doctor - Antibiotics

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SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/4/2009 9:39 AM (GMT -6)   
This is probably going to be controversial but I feel strongly as adults it is our right of choice. If all else fails as it has for me and you choose this route please confirm my information with your own research or better yet consult a MD. I am not a MD but rather a Lyme victim that has done years of research on the topic. I have slipped farther and farther into disability over the years as I was undiagnosed, misdiagnosed and even swept under the rug and ignored by countless dr's. My doctors watched me get sicker and sicker while they did next to nothing or told me I must just be depressed. I wish they could be held accountable as I now know if I were to have gone on early antibiotics in the beginning it would never have got this far along. For some this is a matter of life or death, if we continue to ignore our disease we will end up a complete cripple or even dead. My dr's won't give me more then 2-4 weeks of antibiotics for late stage Lyme and every time I go on them I get better only to relapse when I stop taking them. I am on disability and cannot support myself. I am on state insurance and cannot afford a LLMD because they do not take my insurance.

I want to dedicate this post to you guys that have successfully treated yourself and what has worked for you with a focus on antibiotics. If you don't already know antibiotics have the highest proven effectiveness known in the Lyme world. As you may or may not know you can now buy prescriptions online without local dr approval (google it). You can now have more personal responsibility over your own body in the event where all else has failed. I don't recommend going this route for most but for some it is the only option left between recovery and a wheelchair. I have just started on long term antibiotics and I will share what I have learned. This is for information purposes and anytime you take drugs there is risks involved so I suggest you first try and consult your MD or at least be under supervision of one. If you experience any kind of allergic reaction or abnormal reaction you should seek medical treatment asap. Most of this stuff is just common sense but it has to be stated.

I have found that early-mid stage Lyme is most commonly treated as follows:


Doxycycline (Oral) OR Ceftriaxone (IV for late stages)
Amoxicillin (Oral) or Penicillin (IV for late stages) can also be used but are less common and more of a secondary option.

Doxycycline is taken at 100MG 2-3 times a day. 2 times for early stage and 3 times a day for later stage. The treatment length can also vary and is a matter of opinion. While early Lyme is usually 2-4 weeks duration mid-later stage Lyme treatment can be up to a year or even more when going the long term route. Amoxixillin should be taken at 500MG twice a day orally. The duration of treatment is similar to Doxycycline. Typically you will be prescribed Doxy for a month and go from there based on your progress. It is usually sufficiant for many early sufferers. For the IV dosing & treatment duration refer to the URL below.

There are also more aggressive antibiotic combination's that some LLD's use for late stage or resistant Lyme. This is commonly used when one alone is not working. It is based on opinion and it is outside of the approved treatment plan. Such combination's would include taking both Doxy and Amox together at the same time. Just remember with more medication there is also more risk.

My treatment plan is referenced from Clinical Infectious Diseases 2000; 31(Suppl 1):S1-14. and from Wormser, GP. N Engl J Med 2006; 354:2794-801.
Check out this site for more info http://www.aldf.com/raad.shtml

If you would like to add to my information or correct it please message me. What you do with this information is up to you. You may use it to see if your doctor is on track or if your doctor is not willing to give you long term antibiotics (some will not) you can even order them online now-a-days. Lyme is very serious, don't let anyone tell you that 2 weeks of antibiotics for mid-late stage Lyme is sufficient. Your future is on the line and the earlier the treatment the better.

Good luck friends.

Post Edited (SickInCT) : 1/4/2009 10:41:49 AM (GMT-7)


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 1/4/2009 1:38 PM (GMT -6)   
I can get the drugs , how do you get the line and blood work?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/4/2009 1:54 PM (GMT -6)   
You both may benefit from reading the post titled "is there an alternative to doxy/rifampin for bart??? " You can go to the top of this site and enter it in the Search Site rather than look back thru all these posts. Anyway about the 10th post phsinvent shares how you could deal with blood work. Phsinvent would be a good one to discuss this with since he's been self treating for at least 2 years and is apparently symptom free.

As far as getting a picc line I don't think that can happen without a willing doc.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/5/2009 4:48 AM (GMT -6)   
You would need a dr willing to inset a picc line. With the picc line alone there are moderate risks involved so it should NEVER ever be done by an inexperienced individual. I would suggest that even people with mid-late stage Lyme try longer term oral antibiotics FIRST. The IV is for when everything else has failed and it's a last ditch effort. When you have had Lyme for a long time it can get deep into joints and tissue that normal oral antibiotics are less likely to reach. The IV pumps directly into the heart so it circulates much better.

If you start on long term oral antibiotics there are things you must do to help the antibiotics reach deeper where the spiroceet may be hiding. Things like daily hot bath soaking (at least 15-20 min) and light exercise (if possible) can greatly increase your chance of success on orals. You also want to take them at exactly the same times and never miss a dosage. Never drink alcohol on antibiotics because it can reduce effectiveness. Do not drink milk within 2 hours before or after taking your dosage. If possible take on a relatively empty stomach. Taking Ginkgo Biloba will also help effectiveness. Strictly following these suggestions alone could be the difference between success and failure. You should also do the common sense stuff like get plenty of sleep/rest, follow a healthy natural diet and drink plenty of water. Unfortunately its a long hard road to recovery, it does not come easy but when you get your life back it will be well worth it.

Post Edited (SickInCT) : 1/5/2009 3:56:20 AM (GMT-7)


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/5/2009 1:18 PM (GMT -6)   
You should get Dr. Burrascano's treatment protocol. You can download it online. He is the leading authority and lists all the drugs, their effectiveness and the right dosage to take. He says doxy should be 300-600 mg a day (in two doses), not 200 as you wrote. One of the most common reasons for treatment failure is too low a dose and/or too short a duration of time taken. Also you need to consider coinfections. If you are coinfected with something like bartonella or babesia (and most people are!) then you cannot recover if you do not also address their treatment, which is different. There are some very effective drugs, like Ketek, which Burrascano believes is the best abx to knock out lyme, but your liver needs to be monitored carefully because it can cause liver failure in some people. This is one of the problems with treating yourself.

You can also try herbs when you feel better to help prolong the remission time. It is my experience that the herbs need to be changed frequently. There are a lot of books published about alternative treatments and herbs but I believe you should be well on your way to recovery without symptoms when you quit abx and go on herbs.

You cannot let down your guard and eat junk food, especially sugar. Magnesium, B12 and zinc should be supplemented. Borrelia depletes magnesium and B12 and many of the symptoms of dificiency of those are the same as lyme - such as muscle pain, cramping, pins and needles, memory loss, depression,spasms, etc. You can order B12 shots or get them from a sympathetic doctor. If you do not have fingernail moons, you may have a B12 dificiency (not a scientific claim). I have been taking the shots and notice my moons are slowly returning (also coming back as I get better).
You have to address the cyst form of the bacteria which requires another set of drugs which are hard to tolerate.

To locate a sympathetic doctor try going online and looking for one in your area that prescrips more natural drugs like Armour thyroid (they often go by symptoms rather than tests to determine if the patient is hypothyroid). They seem to be more open minded. Then take Burrascano's treatment protocol to him/her and ask for help. If you had the EM rash, tell the doctor and point out that it is diagnostic of lyme. I am lucky that I found someone that usually does what the protocol says but I am unlucky in that he will not read it and I have to underline what I need him to know. So in the end I am treating myself and it gets old. I feel very alone.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/6/2009 1:11 PM (GMT -6)   
nefferdun said...
He says doxy should be 300-600 mg a day (in two doses), not 200 as you wrote. Magnesium, B12 and zinc should be supplemented. Borrelia depletes magnesium and B12 and many of the symptoms of dificiency of those are the same as lyme - such as muscle pain, cramping, pins and needles, memory loss, depression,spasms, etc. You can order B12 shots or get them from a sympathetic doctor.


Thanks for the info. Could you please elaborate on some of it for us? I would agree with you that doxy could be taken in higher dosage then what the guidelines suggest for better results. I was simply following the guidelines but your correct being as aggressive as possible as soon as possible is critical! Do you mean 300-600 mg total or 300-600 for each of the two dosages? I have also seen B12 do some AMAZING things for me and my symptoms. I will also try the zinc and mag. I know when taken in a multivitamin there was no change whatsoever while taking them separately works well.

What do you suggest for the cyst form of spirochete?

Post Edited (SickInCT) : 1/6/2009 12:26:25 PM (GMT-7)

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