You are all invited to my pity party

[wonko]

I suppose I could have titled this "How I've treated my Lyme is year," but after writing awhile I went with the above.

Since I don't swing by as often as I used to, I'll start off by noting that I was dx-ed with Lyme and Bart in late 2008, based largely on exclusion of other conditions and clinical presentation.  That is, no firm blood tests.  I was treated by an ILADS LLMD on combination oral antibiotics for over 3 years.  

In 2010 I relocated from MD to the Midwest.  I continued to go back East to see my LLMD, but that got to be too difficult, actually more so in terms of scheduling than even financially speaking.  The last time I went to MD was 8/2011, and I think I had one or two phone consults later that summer.

I greatly improved from the antibiotic treatment.  For example, many disturbing neurlogical problems, including heat intolerance and widespread paresthesias, completely or mostly resolved.  The most persistent (and for me most disabling) issue has been bone.crushing.fatigue.  As in, I can be alright one moment and the next I feel drained and mentally foggy.  This is severe enough to cause me to regularly miss work or cancel commitments, etc.

In fall '11 I scheduled an appt with an LLMD driving distance from where I now live.  That fall I also I hit the 3 year mark of treating, and while I was still awfully fatigued I was hopeful that I was mostly over this mess.  My LLMD appt. was supposed to be in January.  Unfortunately, the doctor had to cancel due to their own personal medical issues (I believe it was a car accident).  So around the new year I found myself without an LLMD, and it was also a professionally demanding time.

As 2012 got underway, my primary issue was still fatigue.  I was feeling very "down" over living 1/2 of a life for what was closing in on 5 years since I first started having bad symptoms in spring '07.  I never have enough energy to do anything after work.  If I can even manage a small errand at the end of the day I take it as a small miracle.  Furthermore, at the time I felt that I had seen no real improvement in the last year of antibiotic treatment.  Basically, I felt stuck in my recovery, stranded without an LLMD, and fed up with dealing with this ongoing invisible battle.

I decided that my next move would be to stop abx (afterall, I didn't seem to be making more progress) and to push through the fatigue as best as I could.  I think I was trying to will myself well.  I already drink a good amount of coffee on a regular basis, and I started to double my efforts.  No matter how drained I felt I stayed at work and put a great deal of effort into acting "normal."

Well, after a couple of months I was still fatigued, just also experiencing stomach aches and edginess from all of the caffeine.  

Next, I decided to get a new general physician and start from scratch.  Maybe I was mistakenly attributing the fatigue to Lyme when there was another culprit?  Well, the doctor told me that other than my weight (I am obese), I appear to be robustly healthy.  I then "confessed" to her my struggles with fatigue and she said that "it must be something outside of the box" since all of my ordinary tests/vitals were spot on...or almost.

One abnormal finding from my physical was a mass in my abdomen, and I was referred for a gyn ultra sound to investigate.  

Fast forward to this summer!  The LLMD who had to cancel in January was able to meet with me in June.  She is an ILADS member and took my case seriously and does believe that I need more treatment.  Unlike my previous LLMD she is firm about maintaining higher dosages.  She says that "low and slow" treatment will not work as well, and I could very well be a walking case of that.   So I left her office with fresh prescriptions and am currently on 3 antibiotics.  She also has me on cholestyramine, not for cholesterol (it's label usage) but to help with detoxing.  While normally herx-like reactions would cause me to shy away from abx, with the cholestyramine I'm tolerating all of my meds well.

We're almost caught up to the present, I promise.

Yesterday I had a follow up on that ultra sound done earlier this summer.  Lo and behold, I need surgery soon, as while the mass is benign, it is large (spherical with 13 cm diameter).  It seems just after getting back on treatment, and tolerating more aggressive dosages, now I need to deal with a new curve ball.

For the most part I am optimistic.  I may even feel much better with this thing out of me, and since getting back on abx this summer went so well, it could go well again after the the surgery.  I think I'm feeling mentally thrown off of my game by this new factor in the equation.

So my reason for posting isn't to ask a question so much as to let out a lot of pent up frustrations, and perhaps also to foretell that I'll probably be more present since I'll have 4-6 weeks recovery time away from work.  Looks like a lot of new faces (and some old) and a comfy place to wash ashore.

Hope everyone is heading into a relaxing weekend.

[mojogal]

Surgery of any kind is a scary thing especially if it's your first time. Just think, you may feel better and if you still need Lyme treatment then you will get better from that too.
I was illl for 18 years and knew I had Lyme 2 years ago but the official dx came in March when I finally got to my LLMD.
There are many detox meds we can talk about if you need to go that route , cholestramine is a good one but it didn't agree with me.
But for now wishing you much success with your surgery.

[wonko]

Thanks for the comments, they make me feel better about the past year.  I've been feeling foolish about my stubborn caffeine streak, as well as somehow not realizing I had such a large growth.  I think between being consumed with difficult symptoms, plus a history of lots of doctors being dismissive and rude to me, I got into a bad place in terms of taking care of myself and recognizing (and acting upon) changes in my body.

As for "low and slow," it does make sense to me that higher dosages will be more effective.  For my first year or so of treatment I was diligent about keep up on all of my abx and gutting through the consequences.  At that time I had dropped down to part time work.  When I resumed full time, I was more inclined to take breaks or stay at lower dosages.  Throughout treatment I've had what seem to be excessive negative reactions to abx, which is baffling since before getting sick I was never "sensitive" to anything!

At this point in time I think the cholestyramine is what is enabling me to tolerate the abx so much better than in the past.  Some of the abx I'm currently on are the same I've used in the past, while the cholestyramine is new to the line-up.  I feel there are always more variables than data points, but it's my instinct that the cholestyramine is making a difference.

I have about a week and a half until surgery, and I'll stop all abx for that.  I've never gone under the knife and regardless I think it is an upsetting and frightening prospect.  Plus it is more public than my usual health woes as I'll be out on leave for some time.  But I'm trying to keep in mind that I could very well come out feeling better.  It's impossible to say now but some of my problems with stamina and fatigue could be from the tumor and not from Lyme & Co, though as noted above it might be a good idea for me to get re-tested for co's.  My next LLMD appt. is scheduled for late Sept, which hopefully will be long enough after the surgery to re-evaluate my baseline.

In all honesty, while I have some unique fears and concerns about surgery, 4-6 recovery time compared to years of struggling with chronic illness doesn't really sound THAT awful.  Hopefully I'll tough it out just fine.

[Ricobord]

Welcome back!  Thanks for your update.  I, too, am convinced that low and slow just drags it out. I am glad you found out about your growth so it can be removed.  That must be unsettling, but it must feel good to know it's coming out.

Have you been retested for coinfections? I heard one story where mycoplasma tirned out to be the primary culprit in unrelenting fatigue.  I hope you start feeling better soon.

[capucine07]

I'm brand new here, your story speaks to the heart ! Yet, I'll spare the pity for all of the sufferers (amongst whom I was one up until so very recently...and for 15 long years of pain and agony...) who aren't even aware of their condition and the treatments. You're in good hands now, it seems...me too, I think/hope and you'll pull through it !  

[mojogal]

I have seen your name on here but I am probably a new one for you.
I am very sorry you are having a rough time.
If it helps, I agree with your new LLMD, I am on 3 abx for Bart's and babs. We are here for you to vent to anytime.
Good luck with the surgery.

[JackieCalifornia]

Hey, Wonks, good to hear from you -- sorry to hear you're not all frisky and out skateboarding in your spare time, but that will come, I am sure.

Keep us posted -- best wishes for the surgery --