Getting closer to the finish line?

[wonko]

This isn't a question, just an update.

I had an appointment with my LLMD this week.  The good news is that I may only need to treat for a few more months, with a possible maintenance plan to follow.  

I'm not sure when I got infected but suspect it was around summer of '02.  I became obviously ill in spring '07, with a largely neurological presentation that became more overtly systemic after a (misguided) steroid treatment in summer '08.  After seeing about 8 doctors/specialists with no answers, I went to an LLMD in 11/08, diagnosed (largely on clinical evidence) in Dec '08, which is also when I began treatment.

At my last appointment, I got the results of a repeat blood smear that show my bartonella/mycoplasma levels, while still present, have dropped.  Furthermore, a new EKG shows my heart has improved.  (I had a murmur and a long QT delay before, both have resolved with treatment.)  I have not gotten another MRI since treating, but given that my neuro symptoms have only improved, I suspect that the brain lesions I had on previous MRI's are either healing or, at the very least, stable.  

I had blood drawn for an IgM Western blot, but I won't have those results for a few more weeks.  My LLMD also ordered a full battery of blood work, from liver to vitamin levels and everything in between.  Throughout treatment, my blood work has come back in good ranges except for vitamin D deficiency that seems to resist supplementing.

Like many, my treatment has been difficult to bear, and I often experiences crazy oscillations between improved and worsened states.  With all of that "noise," it is only with time that I can look back on my treatment and note the slow but steady improvement in my baseline.  This was not a quick fix, nor was it monotonic or predictable.  

I still do Herx, but I don't go down as far and I bounce back much faster.  I still experience fatigue and "brain fog," but to far lesser extents.  When I become inflamed during Herx reactions, I still get fibro-like pain in my skin and muscles, but it is less severe and resolves faster.  As summer rolls in, my heat intolerance has resurfaced, but is much better than in the past.

My biggest complaint is that I still feel limited in what I can do, a la the popular "spoon theory," which if you haven't read just do an internet search on it-it's a nicely written summary that communicates the frustration of chronic illness to those who have not experienced it.  Anyway, I often find that I still need to chose:  Do I go to the store, or do I vacuum the apartment, 'cause I know I don't have the energy for both!  But being able to do any extra task is an improvement, and I think with time my stamina will continue to grow.

I was fortunate to have an employment situation that allowed me to work part time during the first year of treatment, and the nature of my position made it possible to work in bursts as I was able.  I was also able to hide my illness to all but my most inner-circle of colleagues.  I resumed full time work, and am working to get my career back on track.  

I often feel like I am fighting with one hand behind my back:  I'm throwing punches, but I know this is not full-strength me.  But given my progress, and my ability to "fool" the rest of the world, I think I'm on the right track and hopefully approaching the finish line.

[Chatterbox58]

Congrats Wonko, hope everything goes well with you as you definitely are A FIGHTER!!! Take care!!!

[Hope75]

I think it is wise that you are looking at your recovery on the whole, because I too, have to look at the big picture before I can see the improvement.  I do show improvement, but have setbacks and familiar visits from old symptoms, but to a lesser extent.

Heat intolerance, boy did you hit the nail on the head.  I have the same thing, but I'm improving greatly.  I don't know how my pregnancy equates in all of this, because I feel better on the heat intolerance and neuropathy side, worse on the insomnia and anxiety side.  

I think we will always be in treatment, just with hopefully long vacations.  That is almost comforting, really, because when the doc says, "ok, you're done!" I won't panic, because I don't think an LLMD will expect full recovery without relapse risk at any point in time.  

I have to say that I have improved over the last, gasp, four years, but mostly in the last four months of oral antibiotic treatment.  I can't believe I am saying that.  Scary side note for me is that I'm pregnant and can't have that type of treatment for a while, only "prophylactic" antibiotic therapy that my LLMD will prescribe tomorrow.

Keep focusing on the positives, like you have mentioned.  We can't expect perfection, but a blessed improvement is nothing to laugh at.  You may continue to get better without treatment!  Isn't that a wonderful thought....we can hope.

Hope:)

[wonko]

By heat intolerance I mean that my neurological symptoms are activated by heat.  This is similar to Uhthoff's phenomenon associated with MS.  Even now, when I get into a hot car in the summer, my whole face starts to prickle and buzz.  Long-term heat, like being outside on a hot day, makes my vision blur and makes me feel very weak.  When I was more sick, I couldn't take hot baths, and even warm showers would sometimes would leave me exhausted to the point of requiring a day's worth of bed rest to recover.

My bart levels are down, but I still have it.  I was reminded of this both trough recent testing and yesterday when a large classic Bart rash (red stretch mark-like) presented on my forearm.  I do get moderate sweats lately on rifampin/zith, which is to target my bart.  Not soaking, but enough that my nightclothes and sheets get damp.

When I wake up each day I struggle to walk at first because the bottom of my feet, shins, and knees are inflamed.  Also my ankles give off a sharp pain when I try to rotate them in the AM.  Getting up and moving, along with AM coffee (forbidden by some Lyme diets, I know) help loosen me up and feel better.  This symptoms can reappear if I am still for prolonged periods, such as working at my desk, driving a distance, sitting through meetings, etc, but is always at their worst in the AM.

I've always been lousy at differentiating what symptom is from what co-infection, I tend to group it all into the same package though some symptoms follow distinct patterns or respond to different treatment.

Treating this stuff is definitely a marathon and not a sprint.  As I tried to express above, it is only with a lot of time invested into treatment, and a lot of "toughing it out" through Herxheimer reactions, that I can look back and see the improvement.  It can be very difficult to ride it out.  I know early last summer I stopped treating for awhile because I was so fed up, frustrated, and confused if this was even working or if I was just having tons of side effects to too many medications.  But it only took a few weeks for my symptoms to ramp back up and for me to get back on that horse.

I'm happy to share that I'm overall improved, but it's not all easy street from here.  Even this morning, I woke up feeling awful, so it was funny to some here and read my own optimistic post.  The truth is I am still sick and I am still hurting.  But, importantly, I am making slow and steady progress with time.  I know not to fixate on how weak and pathetic I feel today, because I've also had days when the symptoms break up and I feel my true self coming back to the surface.  I feel far less hopeless and far more like fighting.

I feel so badly for those earlier in treatment who are still going through the anxiety I recall from that time, it is maddening to go through the doubt about a correct dx and wonder if treatment will work.  I wish I could offer better or easier advice than to stay patient and diligent, but that's all I've got.  

[jkv44]

Hi,
that's so awesome to hear. I know you struggled for a long time from reading the posts on this site.

When you mention hear intolerance, do you mean sweaty??  Also, I know you had bart. Did you have sweats a lot with that? since treating the babs, my soles ache like a tooth ache and have constant sweating. Did you experience that?

JKV

[juliva]

Glad your doing better and almost finished with treatment!! It is good to hear good results and endings :)

Congrats!!!!

[mdscycle]

  did you ever try CHLOROPHYLL/CHLORELLA /ALFALFA liquid form.... get infos and if can give shot.... also water ,orange juice  fresh from the oranges  ... lots and lots of  greens....,,,, and herbs tea....  wish the best.

[JackieCalifornia]

HURRAH!!!  Fingers crossed that all continues to go well.  Will be interested to hear what your maintenance treatment comprises ....