posted
Before I indulge in a moment of self-pity, I will first state how fortunate I am to have gotten as much better as I have. I know it is those who have yet to make a breakthrough who need the most support.
But I'm feeling very emotionally pushed to the limit over my physical health.
I've been on abx for about 4.5 years. I'm much improved. I'm not only back to working full time, but while treating I actually landed a very competitive job and have made significant advances in my career.
But my health is still very precarious, thus my "near the cliff" heading.
Out of nowhere I can wake up feeling exhausted, like my blood is thick, with body pains and aches all over. I don't get all of my old symptoms back, thankfully, but I do get disabling fatigue.
I go overnight from working 60 hrs a week to trapped on my couch, with brain fog that leaves me feeling like a mumbling idiot.
In general I do not tell people about my health concerns and instead use any excuse I can to explain absences when they happen. Or, if I can, I drag myself in to cover the essentials.
Sometimes I drink 3 pots of coffee a day to combat the crushing fatigue. That and the mental burden of always trying to "hide" my illness sometimes leaves me depressed or suffering from low self-esteem.
I've heard others say that the fatigue can be the last thing to go, but I get discouraged when it gets better for a time, only to return.
Every time the fatigue relents again, even if only for a day, I get excited that maybe I'm finally over it, but it keeps coming back.
I don't expect a medical answer to this, I'm posting in general support because I really need to offload the frustration I have over my problems with fatigue.
I feel so close to being mostly done with Lyme & Co, and hope this last, nasty problem will clear up for good!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I am in a similar situation although maybe not as far along as you. I've been treating for approximately two years but have plateaued.
The fatigue is really the only thing holding me back. Certainly not my only symptom but without the fatigue I would be in a much better place. I work part time because of the unpredictably of my symptoms. Somedays I can run, workout, ski, really do anything, and other days I struggle to walk up stairs.
I personally think that the antibiotics for me have run their course, so I am going to explore some alternative options. But believe me when I say that I know how frustrated you are. You are completely limited in what you can do because you have no idea how you are going to wake up tomorrow.
Trust me if I ever find a solution to this, you all will be the first to know! Hope you continue to progress, and your fatigue eventually relents -Mark
Posts: 169 | From The Poconos | Registered: Jun 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Fatigue is relentless. I get so tired I have to sleep every afternoon.
I rarely have the days were I feel well enough to run or ski! But I think I may be a tad bit older!
When you have those moments to do something-enjoy!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Thanks for the replies. Pony, it does sound like a similar situation. Though I actually didn't properly count how long I've been treating: I'm at 3.5 years, not 4.5. As for my age, I'm soon turning 33 (but feel much older most days!).
I didn't improve at all until late into the 1st year.
It is true that I feel as though I can't rely on myself, it is difficult to plan because I can at a moments notice go from functioning to not.
Part of what is so tough about working is that when I do have energy, I feel strongly compelled to apply it to work, not to my personal life or to hobbies. As a result, my life is a bit imbalanced. The first "extra" to go is exercise. If it comes down to working out OR making it to work, I have to give the latter priority. Especially since it seems that when I'm feeling sick I am likely to have exercise intolerance, even though when well I can work out for an hour and feel good!
I keep thinking that I can't possibly need more abx but every time I stop taking them I backslide within weeks. I am seeing a new LLMD soon though and am looking for more sustainable alternatives.
Thanks for "listening." I hope we all get well and back to what's important in our lives soon.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You speak of finding sustainable alternatives. This might be of interest.
Regarding herbs and supplements, some LLMDs are well versed however if the new one you see is not, you might ask if she or he knows of a LL ND.
It may be best to consult with an ILADS-educated LL doctor who has had 4 years of post-graduate medical education in the field of herbal and nutritional medicine -- and someone who is current with ILADS' research. -----------------------
Integrative / Holistic M.D., etc. (but be aware many in this category are not formally educated in herbal medicine other than a weekend lecture here and there)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links . . .
RIFE links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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