Introduction
This site is USA-centric, because this is what I am familiar with. Lyme and other tickborne illnesses from various parts of the world have differences, but I hope this site may be helpful anyway.
Chronic lyme is as controversial as AIDs used to be. I'm trying to present a sampling of different aspects using studies and reports from sources which are more likely to be accepted by a conservative US medical industry- ie, probley where your doctor is coming from. Some of these are very technical, and not easy reading material, but I felt it would be better than presenting more easily read articles which could be disregarded. This may also make it also easier for patients to present more easily read articles to doctors who can't or won't read the studies and then refer to some of the harder material here as back up evidence.
You don't need to know the medical "language" in order to get something out of these reports and studies. You don't need to understand all the processes that go into a study (although, I sometimes wish I did). If you are doing research for yourself as a patient, and can understand 8 words out of 10, don't panic, and have an online medical dictionary on hand, you can get something out of all this that will help you understand what is going on & hopefully give you some clues as to how to get well. You'd be best off learning as much as you possibly can. Because, honestly, chances are your doctor really doesn't know much about these illnesses. Any change in that will not only help you, but may also save someone else an awful lot of misery and tragedy. Be prepared for a lot of banging-your-head-against-the-wall and frustration if you choose or are forced to help make changes, but those changes are sorely needed.
A much better alternative to banging-your-head-against-the-wall is to find an LLMD or Lyme Literate MD. If you can afford it. Just as the term suggests these are doctors who generally specialize in Lyme and are well read in both sides of the controversy. And have decided that treating their chronic lyme patients is the ethical choice. If you are in the US or Canada a good source of info on patient recognized LLMDs is the lymenet board. You may have to travel to see one. They can be expensive. If the fees are totally outrageous ($1000 per visit is worst I've heard) chances are they are hypocrites and don't care much about their patients anyway. Avoid them. Some very good ones do charge as much as $500 per visit, most charge much less. If you are in Europe, you might try asking on Eurolyme. I don't know any other world region's resources, if you have one, please let me know.
Part of the controversy and myth here is directly related to the infamous Tuskagee Syphilis studies. It must be remembered that the premise that late syphilis (and by extension- lyme) is untreatable is NOT backed up by any science whatsoever. That paradigm originated as a defense strategy developed by lawyers for the perpetrators in the Tuskagee studies criminal trials. We are not talking malpractice here, but homicide and battery. Many people, including myself, still view this as genocide. The trials were held in a kangaroo racist court and the charges against the perpetuators were dismissed. However very few people from any walk of life really beleive they were innocent. The repercussions and issues didn't end there.
Not treating spirochetal disease is not only unethical, it is criminal. The US goverment later issued a formal apology to the victims of these horrific studies.
Many people are now treating themselves because a lot of doctors still refuse to believe the tests' inaccuracy rates or refuse to take the time to learn about treating late spirochetal illnesses. If you are already one of these people- please be careful, please be safe. Cross reference everything. Read, read, read! Look for references to legitimate online drug companies so you don't get ripped off.
It can sometimes take a long time and a lot of pain to get your life back, but much or most or all of the damage that Lyme has done is generally reversible if treated well. Remember that.
Caat :)
