OK, so I guess that is not really a question, but it is amazing. I feel like a totally different person.
As I've shared here before, I treated chronic Lyme and Bart for almost 4 years. Despite overall improvement, fatigue has been an ongoing battle. I've fought it as best as I can through too much coffee, regular exercise, getting as much rest as I can, and being just stubborn. But it has caused me immeasurable pain and suffering.
So for me to be 1 week with no fatigue is kinda totally awesome.
I have too few data points to decide if this is just a lucky coincidence or if it may have to do with my recent myomectomy. My doctor told me that based on the type of fibroid I had that it would not be causing anemia/fatigue, and I did experience some terrible fatigue in the few weeks post-surgery. But since last week, around the time my body was really healing up from the operation, my fatigue lifted.
I'm doing my best to remain realistic that some of my years of chronic fatigue symptoms that accompanied my Lyme & co., but never got better with treatment, could still have been caused by my Lyme & Co. and they could come back. But I'm starting to hope that maybe some of my misery was, at the very least, being exaggerated by having a 14 cm diameter parasitic fibroid tumor that was latching on to whatever it could grab at in my abdomen.
Needless to say my fingers are crossed.
For anyone who is having a long road to improvement, just keep at it (it terms of attitude, and always listening to your body and working with the best docs you can). Things can get better, even if it takes awhile!
That is fantastic to hear wonko. I so look forward to that time!
Fibroids!! Very interesting......this is one of the issues that I have put back on the shelf because I felt I really needed to tackle the whole Lyme thing. I just felt like I really needed to pick my battles and didn't have the energy to tackle the fibroids as well. I'd be really interested to hear the others thoughts on this. I knew that there was a connections between Low Vit D levels and fibroids but not Lyme and fibroids.....now you have me thinking. Thanks heaps for sharing and keep us updated :-)
That is great news!! I think there are a whole lot of things that can go wrong in our bodies that results in general fatigue, and doctors just don't know all the possibilities. I have been reading lately on how connected the immune system is to the gut. A healthy, well balanced gut is required for a healthy, functioning immune system. Maybe the fibroid in your abdomen was causing collateral damage in your gut that have repurcussions elsewhere, such as inyour energy level.
Regardless of why, that is wonderful. I actually had a few moments a week ago where I suddenly though, "I feel almost normal!" It didn't last very long, but it gave me a peek into what being able to think clearly feels like after over two years of not being able to.
I really have no idea if/how the Lyme & Co. was intertwined with the fibroids. While I have discussed my "history of Lyme" (that is how they charted it) with my current docs and the surgeons, they are not the LL sort.
I do know that my OBGYN was firm that the fibroid I had (well I had two but only one biggun) was not of the type that would affect my cycle or energy level. It was pedunculated, growing off the top of my uterus on a stalk. During my surgery they discovered it was also invading my bladder and forming other adhesions in my abdomen. (This apparently stumped the surgeons and they had to call in another team to finish the operation, which doubled my time in the OR!)
Anyway, despite the prediction that nothing would change, I think some things are different without the fibroid: Prior to surgery my cycle was 23 days, and I would have flow for 7 of those. That left me with about 1 week per cycle with neither PMS nor flow. My first period after my surgery was right on that 23 day cylce, but the 2nd one happened on a 26 day cycle. That is the longest cycle I've had in years, and I'm hopeful that will be my new "norm." Since my Lyme & Co always gets worse around my period, having them fewer and further between would be a great break. So there is the possibly longer cycle, and the possible relief from fatigue. (Knock on wood.)
I still feel/experience some of my other low-level Lyme & Co symptoms, like last night I had trouble falling asleep because I was seeing "lights" in the dark with my eyes closed, and the bottom of my feet hurt, esp. in the AM, etc. But those are all livable and much easier to manage without the crushing fatigue.
Rico, I can relate to those peaks of normalcy! When I was first treating I would have moments like that and would burst into tears, so relieved that I wasn't necessarily "stuck" in the miserable state I was in. I hope you have more and that they last longer.
Mojo, I don't think I'm inspirational, but thanks for sharing my happiness with this upturn.
Robyn, I totally understand prioritizing. I didn't really know about my fibroid until this summer. I can't imagine having surgery early in my Lyme treatment. I'm just surprised to be feeling so different after being told that the removal would not change how I feel or my cycle. It's really too soon to tell, but after years of fatigue 1 week is enough to be excited about.
I first started having fatigue back in '07, before I was dx'ed (and before I was 30, those were the days!). My fatigue became awful in '08 after I was put on a few weeks of oral steroids (still pre Lyme dx). After that it was like I couldn't get moving again. Oddly, during treatment, while tons of other problems slowly but surely improved, my fatigue stayed/got worse. Those who experience it know how much of a toll it takes on life. I hope my luck continues and I can have more days without that dreadful feeling. I'm sure lots here know how it can feel when nothing works or helps, and I've felt very helpless over the fatigue in the past.
Thee LymeMD blogger told a story about a woman who kept relapsing repeatedly with Lyme. Eventually, they found a mysterious cyst in her lungs. She had it surgically removed, and her Lyme relapses stopped. The LymeMD believed that Borrelia was sequestered in that cyst, and would resume replication every time she stopped abx, resulting in a relapse.
Maybe you had Borrelia sequestered in your fibroid(s), which would explain your difficulty in getting cured. Any chance they saved tissue samples that they could run a PCR test on for Borrelia?
I think it is likely that the fibroids and my Lyme/Bart were somehow synergized in conspiracy against me, and I'm oh so hopeful that now the fatigue will resolve. But I may never know, I didn't think to ask for testing on the tissue, and am not sure how such a request would have gone with the non-LL MDs involved.
I actually went to LymeMD before moving out to the Midwest. I can't recall exactly when it was, but I think it was around 1 year into treatment with my first LLMD. The very reason I went to him was because of how bad the fatigue still was.
I wish my experience with him was as positive as most people react to his blog. Despite him administering what he considered to be an abnormal neurological exam (I had a positive babinski reflex and loss of sensation in glove/stocking pattern, that I recall) he told me that I "wasn't sick enough" to be one of his patients. He was completely dismissive of my fatigue and talked more about himself and his ability to cure "the sickest of the sick, the ones the other Lyme doctors won't treat" than he did about me. I left feeling very upset and perplexed, and decided to stick with my original LLMD.
At first I traveled back to MD a few times a year to keep seeing him, but that got to be too stressful (let alone expensive, inconvenient). I had another very bad experience with an LLMD "in training" about 4 hours from where I now live, then finally last summer found "a keeper" also about that distance from me. However since my treatment got disrupted by the surgery I'm not sure when I'll make it back up there, and am hoping to give my body some time to adjust and to see how I feel before I pursue more treatment. I'd like to think I'm mostly done, but open to that I may need more.
I am experiencing that overwhelming fatigue so I don't know why the LymeMd blogger dismissed you. I am from Northern VA (most of my adult life) and have sent people to him.
He doesn't sound so great in real life. That is to bad but your theory sounds right and Rico, that is interesting about the cyst.
So disappointing to hear about your experience with the LymeMD. :(
It sounds like he is becoming a bit too big for his britches, as I have appreciated his insights. (I have always suspected that someone inspired to blog regularly is more likely to think well of themselves than the average bear.) That is bizarre that he would leave a Lyme patient like yourself feeling "unworthy" when he has seen how devastating such dismissive behavior by other doctors has been on his patients.
Well, I guess anybody can have a bad day. This was probably back in '09 and I've heard lots of other positive feedback about him. At the time I was very upset because so many mainstream doctors had already been dismissive of me, so my trust of MD's was low to begin with.
I do like the blog. I rely a lot on patient testimonials and mostly need support for my illness, but seeing his side of things can add a different perspective to my understanding.
I'm not feeling as awesome as I was when I made the original post of this thread, but overall my fatigue is still doing much better. And without tons of fatigue other symptoms are far less disruptive! For example, one day this week I had a headache. Normally, along with fatigue, that would be too much and I'd have to relent and go home to rest. But without the fatigue making everything else feel exaggerated, I was able to worth through the headache--kinda like a "normal" person.
Who knew I'd actually be glad to have a headache, since it allowed me to feel like a regular jane? I can really start to see now how my symptoms are not really so severe, it is just that the fatigue left me with zero resilience.
I'm still up in the air as to whether or not I will keep a scheduled appt. with my new LLMD later this month, or just wait awhile to see how I fare. I don't want to be foolish and give up on treatment too soon, but at the same time I am not feeling up to the personal commitment to treat more right now...I'm feeling more inclined to focus on other aspects of life. Sick or not, life goes on and I so regret that the last 4-5 years needed to be so consumed with illness and the emotional fallout it brings. I'm worried if I don't squeeze in some life while I can, I'll regret it later.
I have heard so many stories of people who have had enough of treatment and feel like they are good enough, that they want to get back to their lives and put Lyme behind them. But then so many of them end up right back in the LLMD"s office months or even years later with a relapse.
I encourage you to stick with it until an LLMD you really trust says you're done. My doc generally recommends 2 months of an oral abx after ALL symptoms are gone. The hard part is distinguishing fatigue from being out of shape after years of Lyme Disease! A couple more months now is much better than a year or so later.
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