How is Lyme treated if long term?

[Katya4]

I am going to try and get tested for Lyme,

If it does turn out I have Lyme, what will they do, and how and with what is it treated? What has been others experience?

Are there bad effects like merca infections from long term antibiotics? My mother was on antibiotics and almost lost her leg to an infection, so that concerns me a bit. How would one prevent such things? Is it a concern with lyme treatment?

I have no idea how any of that goes, so if someone could explain so I understand better, what may happen if it is a positive result. So I can do my research ahead of time, I am a very thorough person, and I like to go into things with a good knowledge base.

[mojogal]

Some LLMD give IV antibiotics when first treated. IMHO I would never take IV, it can cause more problems then it helps. I had one for a different reason, hemochromatosis, where they take blood out of you. The nurses didn't clean it well enough and the PICC line got infected. I had to take it out and suffered for a few weeks until it healed.

Doctors change Abx often. Dr Horowitz in his book says he changes Abx monthly if things are not responding. He also sometimes adds herbal protocols or may put some only on herbal regimens.

[JackieCalifornia]

oops, this note's first part was meant for the previous post.  Sorry it's all tangled up !

[JackieCalifornia]

I posted an answer there --

[JackieCalifornia]

Well said!  I absolutely agree.

[Katya4]

I have one other question, I posted it under someone else's thread.

Could my 2 weeks of prednizone (sp) have caused my strange acne? I think just hormones, but I've never had acne before and this is cystic acne, painful and red and never comes to a head. I got it directly after taking prednizone, which makes it strange, and they told me it was an allergy rash from the drug but it has never gone away. When it started is was everywhere, but now not so much.

Is that possibly lyme? I think quite a mild reaction compared to what others experienced. I tried minocin (sp) and it didn't really help. I figured natural change in hormones for my age.

Just curious

[Katya4]

Thanks so much for the thoughtful reply, I will check out the recommended readings. In a way I hope it is lyme (because the other options left sound quite permanent) and to have 'mystery symptoms' in no better than some awful disease, because if you don't know what it is, how can you fix it?

Lyme sounds quite curable in comparison to whats left on the list, and if I did have it, there is hope of returning to my normal self

I think my GP is pretty good, and I have hope she can order a lyme test. I notice a lot of people seem quick to attribute all the symptoms to 'mental' even if you test negative for depression and anxiety and have no prior history. Personally I think that attitude easily causes legitimately sick individuals to be far delayed in treatment. I think diligent research is a patients best friend, and from my experience, good doctors appreciate it, but I have run into the physician that shakes your hand and starts the conversation with "Don't look on the internet, you'll just scare yourself." I find those comments a bit insulting, not every person is so unstable they will have a breakdown after reading something on the internet.

[JackieCalifornia]

Sorry to hear you've joined the club here, but once in the door, it's good company -- welcome!  If you gotta have Lyme, you gotta have friends.

Most MDs treat with oral antibiotics (abx for short).  The best known and (in my view) most reliable source of information is at the ILADS [dot] org website (short for International Lyme and Associated Diseases Society).  There is a ton of information, aimed at both MDs and patients, but don't get overwhelmed!  It will all still be there to read later if you need it.

Research continues on Lyme and its companion infections [aka 'co-infections' -- infections that are brought by the same ticks that carry Lyme disease].  It is a hot area of medicine, and there is a war raging between the older view that Lyme is rare, hard to get and easy to cure with only a short course of doxcycycline and the more current view you will find at ILADS.  ILADS is a voluntary society for MDs and other medical personnel who understand Lyme to be a complex ailment, compared to the (imo) less up-to-date views held by the Centers for Disease Control and the Infectious Disease Society of America (IDSA).

One part of the ILADS website is Dr. Burrascano's Treatment Guidelines.  They are still updated from time to time, I think, but even if not very recent, it is still an excellent source of information and perspective on the whole Lyme adventure we here have found ourselves in.

If you are up for it, there is a book, 'Cure Unknown', about the controversy in the Lyme field (ILADS vs IDSA) and how it got so messy.  It's now in paperback.  I find the title a little off-putting, because Lyme CAN be cured -- I have wondered if the title was a sly jab at the out-of-date IDSA views of Lyme diagnosis and treatment ... as in 'there is no cure for stubborn ignorance.'

==
You say, "I am going to try and get tested for Lyme," -- some tests are better than others, but not all docs use the better tests.  When you have your results, we can tell you our experiences and comments, tho no one here is medically trained that I know of.

You say:  "If it does turn out I have Lyme, what will they do, and how and with what is it treated? What has been others experience?"

-- Oral antibiotics are usually the first choice for treatment.  The issues are what antibiotics and for how long.  That's where things can get messy between the warring camps of the IDSA and ILADS.  Let us know what you doc recommends, if you like, and we can tell you our experiences.

You say:  "Are there bad effects like merca [MRSA?  'Methicillin-resistant staphylococcus aureus] infections from long term antibiotics? My mother was on antibiotics and almost lost her leg to an infection, so that concerns me a bit. How would one prevent such things? Is it a concern with lyme treatment?"

-- Long-term antibiotics taken for months, not weeks, are a common treatment for Lyme and other infections the 'Lyme' ticks often carry, and the antibiotics are fairly tame.  The antibiotics are usually given for 3-6 months or so, and MDs usually will insist that the patient take probiotics.  More on that when you get that far.
==

Good for you for studying about Lyme -- we the patients are our first, best line of defense (and offense!) against Lyme.  Let us know how we can help with information and our experiences and suggestions.  You're among friends here.