Hi there notquitesoscared13 -
I'm sorry you are struggling... this is so hard on us. First, you are not alone and you were so smart to post--lots of good responses but that's not surprising, this is a caring group of people.
Also - I LOVE that your therapist knows lyme & co suffering first-hand (not that he/she is ill but) having a therapist who understands this is unbelievably fortunate for you. I am in search of one because I am also having such a hard time coping. Most people can manage pain and symptoms by just toughing it out and being patient. Dealing with all that AND psycho-neuro symptoms is at times nearly impossible. Consider leaning on your therapist even more...
My protocol
I had a smart port IV installed Nov 2014. I did it for several reasons (I share below). Unfortunately I went undiagnosed for 16+ years. By the time I started treatment, I was really, really sick. The first thing my LLMD did was to help me get my viral and fungal loads down, then we got my GI (where 70% of ur immune system is) calmed down--this took 3-4 months before we even started treatment for lyme & co. I share this because I think it's very important that people understand the context for their treatment - there are many factors that can cause drag on your immune system, which will only make treatment more difficult.
I started my treatment with Byron White formulas (for lyme, bart and babesia) as well as at least a couple dozen herbs and supplements and some meds to manage the infection and symptoms and boost immune function. The BW formulas were pretty powerful--except the lyme one, which I had no reaction to. So my LLMD started abx Rx for the lyme a little sooner than she had anticipated (she treats with a hybrid approach and intended all along to have me on Rx and herbal abx).
Working while treating
I will also share with you that up until my final crash before I started treating, I worked 80 hrs/wk, including difficult traveling and just general stress day in/out. I finally crashed in 2013 due to chronic sinusitis and bronchitis that took 13 months to manage but by then I finally had a lyme dx. I resigned from my firm but took on part-time work.
My LLMD cautioned me that I wouldn't be able to work during treatment--sage advice that I did not heed. That has been my biggest mistake/regret in the past 2-3 decades of life. Had I focused entirely on my treatment and allowed my body and mind to slow down, I might have had a better start with treatment. Instead, I tried to work part-time, emptied what was left of my savings accounts and still, the part-time work really set my treatment back. Because of that, I'd say an 18 month projection for duration of treatment (due to the fact that I'd gone so long untreated) is now around 3-4 years.
The reality is that there are too many competing needs for your one body. For every component of your treatment that impacts the infection and tries to rebuild your strength, you are undoing a lot of it by doing too much, working too many hours, trying to juggle too many responsibilities. Your body can only handle so much.
You may not be able to stop (ETA: or slow down) working but to be honest with you, that is going to make ANY treatment protocol, no matter what it is, very difficult to manage and may prevent much success, or just drag it out much longer than it would need to be, otherwise. Them's the cold hard, facts.
The limitations of progress with the treatment while working so much is going to be a common theme... not that you need anything else to stress you out or make you feel worse, but it's something that you need to come to terms with and I know this FIRST hand. You are not going to be able to do it all.
And it's important that you realize that there is also a HUGE penalty for trying... like I did. Our bodies are fascinating machines but when we overload too much they will break down. And a set back in our kind of treatment can be dangerous and very difficult to recover from.
Options for other protocols
I agree with the suggestions others have made that it might be a good idea to switch things up. I would consider trying different herbal protocols and/or a hybrid with abx. Regardless, if you take oral or IV abx success often prefaced by an increase in symptoms/herxing and that's going to be tough to manage when you're also working 60 hrs... particularly if you are trying to hit any infection in the brain--it will most likely impact your cognitive and psychological functions.
Reasons for IV:
- Due to my GI chaos, there's no way I could tolerate abx orally so the IV decision was pretty easy for me.
- I also had severe neuro issues (I was nearly wheelchair bound by the time I started IV abx.) and what I call neuro-psycho issues that I was having such a hard time dealing with everything. There are some oral meds/herbs that cross the blood/brain barrier and I don't know that IV is for sure more effective across the board, but my LLMD thought it would be for me.
- Another easy reason for me to opt for IV was that in my delusional mind, I thought having an IV would make it easier to treat "at the office" because I could infuse higher doses at once and wouldn't have to pop pills 3 times/day. I'm not sure where I got that idea because infusing can sometimes take hours, the meds need to be refrigerated, you need privacy, and by the time I'm done w/ my infusions the debris from all the medical syringes and paraphernalia make it look like the emergency paramedics just got done with me--it's quite the dramatic mess. Anyway, I wouldn't have been able to do this discretely at the office. Never mind the fact that it knocks me into a lethargy noodle state for a couple of hours.
IV Rocephin (ceftriaxone)
For the first 3-4 wks I took this stuff I was an absolute psychotic wreck... yes, it crossed the b/b barrier and I was not able to detox fast enough. I experienced nasty psycho-neuro symptoms (cyclical bouts of anger, agitation, sadness, depression, anxiety, fear, panic that I would literally cycle through from hour to hour) in addition to general cognitive issues. It was the toughest time I've ever had in my 2+ yrs of treatment. But, it kept me out of a wheelchair - I had immediate improvement in my hip joints.
IV vancomycin
I started vanco 6 wks ago and once I worked up to the optimal dose, I have not been able to stay awake more than 8 hrs of the day. I'm now infusing 3 times a day and the vanco takes about
2 hrs in the AM and in the PM, so infusing and sleeping is all I'm doing. But I have also felt immediate improvements--and several swollen and painful lymph nodes, a stiff and burning neck and had a headache for a week. These are not uncommon sx.
IV PICC vs port
Given the expected duration of my treatment I opted for a port (installed in your chest) over a PICC line (installed more temporarily in your arm). I've posted pros and cons about
each so when you get to that point and need to decide--let me know and I can share more detail.
- There is very little risk of infection with the port--the IV needle is inserted (accessed) through the flesh just like a regular IV needle. Except when you are accessed with the IV needle, you can swim and shower, etc. because the port is under the skin. The port must be flushed and specifically maintained to prevent clotting but I have found it pretty darned convenient. The procedure is VERY expensive (mine was $26k - my insurance paid for most of it).
- The PICC line includes a catheter that is inserted into an incision made through the flesh of your arm and the catheter is thread through your vein--the risk of infection is higher with a PICC because this incision remains an "
open wound" and must be carefully cared for, although many people maintain a PICC line for months without incident. I think this procedure was quoted to me around $10k.
Hope this is helpful! Please continue to ask questions and seek help... lots of good info on this forum!
(ETA: sorry, this is probably more info than you wanted!)
-p
Post Edited (Pirouette) : 5/1/2016 11:32:34 AM (GMT-6)