sometimesdilly
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posted
can anyone describe what it feels like when you are just turning the corner and starting to genuinely get better?
i think i am there, but don't want to get too excited yet.
i've been treating Lyme for 3 years and had made little to no progress until the past few months when finally we treated for babesia.
it is difficult to describe the improvement i think i see; it is subtle yet across the board.
what is most different is that for the first time in years i can think and see beyond the hour and day i am in.
it is as if i have been living for years in a tiny house with no windows and no awareness of how odd that is, and then, over a period of weeks, I found a door,opened it, and remembered that there is more.
does that make sense to anyone? and, for those who have experienced something similiar... did you stay awake, or did the door close again?
wondering dill
[ 24. November 2008, 11:31 AM: Message edited by: sometimesdilly ]
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Vermont_Lymie
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Yes! Just keep treating. I have had that re-awakening feeling, and it is the real thing! Congratulations.
There may be ups and downs, as you know all too well. The thing is if the windows spring shut again, do not get too bummed because it WILL be temporary and you will regain all that ground and get well again! Let the sunshine in
I need to start treating babs again; are you on mepron?
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Geneal
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Praying the door stays wide open for you.
Hugs,
Geneal
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sometimesdilly
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posted
Thank you for the yays and prayers, Vermont and Geneal.
Vermont, yes, I'm taking the max-maximum amt of Mepron daily, same for Zith.
My "new" llmd decided to treat for babesia after I told her about my son's (with congenital Lyme) tx trajectory.
He responded quickly and very well to Lyme tx for about 8-9 months, then abruptly lost most of that progress and was sliding further downhill by the day.
Suspecting that a co-infection had kicked in, my son's llmd treated him for babs. Within a few weeks he regained the progress he had lost, and he continues to improve.
Logic says that whatever he has I gave him and have myself, so my doc went after babesia.
I sure hope you're right that this is for real. Whatever happens next, though, you're right, it makes a huge difference to have seen a door and to know there IS a way out.
thanks again.... dilly
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AZURE WISH
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(((dilly)))
So glad to hear the doors are opening. I think babs is a bigger beast than lyme even... and your beating goliath... no small feat
CD57
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posted
Dilly--great!!
Can you tell us your Lyme treatment over the past three years.....did you only treat for Lyme? Did you have any babesia symptoms at all?
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sometimesdilly
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Thanks, Dizzy and Azure and CD-
--i actually remembered all 3 of you without having to type a name, go back to check posts for the second name, etc. that's progress! --
Azure (meow, purrr) I am whispering here so i do not awaken the babs-beast.
i'm under no illusion that i have actually beaten the beast, much less for good. what i'm beginning to feel more sure about is that at long last i'm fighting the right beast with the right weapons and am gaining ground.
after 3 dispiriting years of going nowhere, and after this past summer of vanishing into a black hole of pure h--ll, i cannot express my relief at seeing it is at least possible that i may be one of the fortunate ones who makes it out the door.
CD- I was treated almost entirely for Lyme for the first years. The one exception to that came after about 2 months into tx when malarone was added to the mino i was taking.
that combo yielded the only progress i made in those years. After a month or so on the meds i experienced 2 weeks of relative bliss, then went all the way down. i was taken off malarone and returned to Lyme-only tx until some months ago.
did i/do I have babs symptoms? dunno. for sure not the full list of classic symptoms and not night sweats or air hunger.
on the maybe list- a chronic cough (bad enough at times that my PC doc gave me an asthma inhaler), shortness of breath, major brain fog.
i had my first post-bull's eye rashes a month ago. Over the past months I've had a worsened cough, anxiety attacks and abrupt weepiness for the first time, and for the first time as well, over the past several weeks i've had night sweats and chills.
dizzy- i imagine it will be easier going after Lyme again after this all-out assault on babs. i sure do hope so, but am not counting any chickens yet.
dilly
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Brussels
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Dill, this has happened on and on to all the people I see that got well from babesia.
Every single person I remember here reported a major turn in their health. You are another one!
But be sure to get it for good, because it is a nasty persistent critter. You'll feel if it's still not gone. Babesia is a very mental and moody disease!
Congrats to be back to life!! For me, getting well from babesia was MY turning point both times I caught it. Things get much easier after, specially on the energy and mood side.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
I've posted this before, but I also found getting the babesia was the key. In addition to the atovaquone I took artimesia anua, artimisinin, and garlic. It was evident that these herbals made a huge differemce! (they have been shown effective in studies, too). I have no spleen- this made the babesia even more of a concern. Once I got babs under control I made progress against lyme, rapidly! DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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sometimesdilly
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posted
thank you, Brussels,for telling me that what i'm experiencing is a common thing for those who have made it this far.
That is SO reassuring to hear!
Dave- Thanks for sharing your babs-recovery recipe. I've put off taking art until I could assess how well just the Mepron-zith combo works for me.
For the past 6 months I have been taking and switching around so many new meds I lost all sense of what was helping or not helping what and why, so i stripped down to the bare bone tx basics.
Thanks for reminding me about the art- its time, and yep, i'm a garlic believer for sure (ditto fresh ginger root).
((Dizzy)) Thanks again for being happy for me.
You're right, I think it is fairly common for babs symptoms to pop out for the first time after tx has begun.
I hope YOU are well on your way to beating babs. Such a long road, eh?
dill
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MariaA
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posted
oops double post by accident
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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posted
I've gone from nearly disabled to symptom-free once already (unfortunately I got reinfected with something this summer so I'm back in the fray), and yes, the changes are really subtle at times while you're getting better.
I've been wanting to write up a description of what I've learned about 'having energy'. Brussels (Selma) on this forum once wrote about the subtle improvements, and she talked about something like 'physical energy' (like for jogging, gardening, chores) being different than mental focus energy, and in my experience that is still different than "motivation" energy. I was a few months behind her in my original improvement and it was very similar to what she talked about, and what I think your first post here is asking about.
The improvements are subtle and one day you're just able to do things and realize that you forgot they were challenges a few weeks prior.
Congratulations!
-------------------- Symptom Free!!! Thank you all!!!!
CD57
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posted
That's a great entry, MariaA.
Dilly--you had none of the classic babs symptoms and I assume, no positive test?
What about bartonella?
My son, 3, has babesia titers but I have no symptoms unless extreme depression and anxiety are part of babs. We'd always assumed it was bart/BLO. I'm wondering if I'm in the same situation as you, Dilly....I probably gave this to my son congenitally.
Has the babesia treatment been really hard?
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sutherngrl
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I am now in treatment for Babesia also. I didn't think I had hardly any of the symptoms, but I had this mental thing, severe anxiety, like I'm going to loose it. My LLMD said that can be from Babs. I also have the extreme fatigue that makes you feel like you are dying.
In a matter of 3 weeks, I am beginning to notice very subtle changes. The fatigue is about 10% better, just enough to think there is improvement. I was on antibiotics for 4 months with no improvement until treating Babs.
I'm glad you guys posted this info. I feel very incouraged!
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MariaA
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posted
I had few of the classic symptoms until I started treating, too (other than air hunger and anorexia- what made me think it was babesia after this particular reinfection was that I wasn't getting any better on any antibiotics that I normally respond well to, and then started getting the air hunger).
My LLMD, when originally trying to see if I had coinfection symptoms, told me one of them is an anxiety something like 'feeling like your head is going to explode' or 'feeling like you're going crazy', which I think I've heard other people here describe.
-------------------- Symptom Free!!! Thank you all!!!!
sometimesdilly
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posted
Maria- thanks for your reply. That breaking down of areas of energy makes 100% sense to me, and helps me better analyze what I'm experiencing.
For me, the progress so far is largely cognitive, with a huge dallop of increased motivation (connected i think, to increasingly being able to follow-through at least sometimes with somethings).
Physical energy has yet to return, but that doesn't surprise me at all, given how worn out my bod must be from having TBD's for years and from the meds, etc.
Thanks again for the insights.
CD- No, I've never tested positive for any co-infections, just CDC positive for Lyme (ditto my son).
My LLMD's and Dr. Fallon have all been convinced that i likely do have co-infections, in part because of the severity of my illness when first bitten.
I remember in particular that i had a fever of 104 that nothing could reduce, chills, and pain in every inch of my body that was so horrendous that the touch of anything on my body- including clothes or sheets- made me scream in agony.
(I've always laughed at the "mild flu-like symptoms" description of acute Lyme. )
About your child. As you may know, what TBD's Lyme moms have and what we pass along in utero are NOT necessarily the same.
For instance, even if I had tested positive for babesia and knew I had it, my son would not necessarily have been born with babs, or even if he had been, his babs might not have been as virulent as my own.
About bart. Who knows. I might have that too, though I kinda doubt it. I was on Levaquin for a month or two and it had zero affect on me--not even a herx.
I haven't had a problem with depression or anxiety attacks, but I don't think that rules bart in or out.
Last, has babs tx been hard? Nah. No better or worse than any other part of these years of tx.
The only wildly difficult med i've been on is Flagyl. Now THAT was tough.
SouthernGal-
I'm glad you're making progress and that you can feel it!! Hope you keep on going in that direction.
dill
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Brussels
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Maria, great to know you are feeling slowly better on the "motivation" energy. This is a LOOOOONG process, you bet it!
The babesia big turn about though, that was a clear step up, clear like day and night. That was extremely fast for me the two times I caught babesia and got rid of it. Similar to what many people report here in lymenet, including Dill.
For me, it was THE turn about from being sofaridden, photophobic, extremely depressed, extreme brain fog, napping the whole day, in summary, closer to a piece of plastic than to a human being, to an almost normal person (apparently) in a few days.
It was for me the difference in between feeling close to death and suddenly, feeling life was coming back. I know what she describes like feeling locked in a dark room or in a hole, then suddenly, I felt like I loved the sunlight again and there I was, working out in the garden again!
I got myself back, at least part of it, when I fought babesia. Babesia was the clearest example for me of a pathogen changing my personality to "its" personality! Worse than lyme rage.
On the motivation side, deep energy side, this is very long and I didn't see clear steps though, as you say. I'm glad you are feeling the deep energy tank slowly filled in too. Congratulations!
Wishing Dill, you and others full wellness. Hit the babs for good, you'll get a lot done already!
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MariaA
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posted
Right now I'm discovering that 'waking up in the morning' and 'having energy' aren't the same thing for me. I can't wake up very easily most days, but I have lots of energy the rest of the day. There were some days a month ago when I could wake up easily but didn't have energy the rest of the day.
Oh, such weird disgusting bugs they are...
Also, remember that for anyone on traditional textbook babesia treatment, azithromycin or biaxin/clarithromycin can cause tiredness as a side effect in SOME people- so you might not be able to see tiredness resolve as rapidly as those who don't have this side effect may experience.
-------------------- Symptom Free!!! Thank you all!!!!
johnnyb
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posted
Congrats, Dilly! Glad to hear it!!
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sometimesdilly
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posted
Maria-
i know what you mean about the waking up vs. energy later thing.
because i take lyrica (prescribed to beat back insonmnia so that my body can get healing sleep), i wake up at least slightly groggy every day, BUT i also have restful sleep for the first time in years.
i also still rely heavily on provigil to get me going in the AM and to keep me awake and focused during the day.
if i can retain my progress and successfully begin to rehab my body with exercise, i'll test nixing the provigil and see what natural energy i have.
i'd like to keep comparing notes with you- it sounds like we're in a similar place on the road back.
(((johnny)))
thanks for the good wishes- and to the pasta king
pickles
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MariaA
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posted
Yep, very similar. Note that I don't really know for sure that I have babesia- I got several tick bites this summer that started a cascade of Lyme symptoms and obvious new infection (swollen lymph nodes and flu symptoms).
My main signs of babesia versus Lyme are that a) I usually respond to antibiotics really fast, and didn't this time b) Buhner PRotocol didn't work for symptom relief, which it always does c) I lost my appetite horribly, had this borderline nausea all the time, and lost tons of weight d) I got air hunger from hell and occasional night sweats, especially after starting Mepron treatment for babesia. It's now been 9 weeks or so on Mepron/Biaxin.
I was also using provigil. It doesnt seem to help with fatigue very much when I'm at my sickest, but it's a useful boost when I'm feeling 'sorta' halfway functional. I can't afford it enough to take it every day. Right now I'm feeling energetic enough to consider watching my caffeine intake quite a bit.
Feel free to PM me- I don't read the majority of threads on Lymenet so I might miss stuff.
-------------------- Symptom Free!!! Thank you all!!!!
Brussels
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posted
Hey Maria, sorry to hear you are not that well after new reinfection.
The new bugs require new medicines, it seems. You do seem to be fighting babesia in my opinion.
Buhner doesn't work for babesia, it works for borrelia, at least for me. It never worked for any coinfection for me.
Appetite loss was also my symptom with babesia. I loss lots of weight, then had constantly the iron problem (low ferritin) and needed many iron infusions. D vitamins were low too.
Fatigue was extreme and herxes, the worst experiences I had had so far. Borrelia herxes are for me easy compared to babesia.
Watch out for iodine too. Somehow, my thyroid got problems and I needed T3 and iodine long term. It happened twice for me with babesia, that's why I start to think there must be a relation.
Air hunger was though the scariest thing of all.
You are fighting reinfection exactly like me in summer 2007. It was tough, sorry to see you're in the same hole. It took me around 5 months to get back to the state previous to reinfection, then suddenly, lyme went to remission, even bartonella disappeared so fast as it never had before.
Acute infection is tough, as the new critters use their whole energy to conquer new territory. So I attacked them back accordingly, extremely agressive and varied protocols, even though only with herbs. They couldn't fight back.
Wish you good luck!
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sometimesdilly
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the door is still open, and opening wider and wider...!!!!!!
praying that there is no post-Mepron crash (only one more month of yellow paint to go).
dill
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sometimesdilly
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thanks, dizz...
yes, i've had Lyme-related heart irregularities throughout. Was put on a Holter monitor twice.
as i remember, mino greatly intensified that symptom. Levaquin did as well, but not as much.
Its possible that bacterial load had a lot to do with intensity of response--i had mono early on, and levaquin much more recently.
still hoping for the best for you...
dill
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seekhelp
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posted
Last Thursday, I had an enlightening moment, but it didn't last more than a day. I actually realized I felt normal. Life seemed better, a cloud swept away, and I was truly happy. My muscle tension left, I had a spring in my step, etc. It was a miracle.
I did a little bit of activity and now I'm horribly sick again with severe muscle tightness, fatigue, lightheadedness, etc. It almost made me sad because I remembered all I had lost.
I think Babesia is giving me the most issues and I know I'll never get adequate treatment from any LLMD / ID doc in my state. Talk about a hopeless feeling. I hope it's Lyme and persistent Abx treatment will help, but what if it isn't? What if Babesia is the culprit?
How can I beat Babs on 1 tablet of Malarone a day at most? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymednva
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(((Dilly)))),
So glad to hear you are still feeling this way. What wonderful news!
Dilly said:
quote: He responded quickly and very well to Lyme tx for about 8-9 months, then abruptly lost most of that progress and was sliding further downhill by the day.
That is exactly what happened to me in the beginning. I was on Ketek and Omnicef, with plaq. for 8 months. When I stopped that tx I was feeling so much better than I had in the beginning!
Then I started treating Bart, felt it was really hitting it hard, but due to tendon problems from Levaquin, he stopped that and switched me to Babs tx, since that is the one and only thing for which I have a positive test!
In August he stopped my Babs/Lyme tx, except for keeping me on an increased dose of artemisinin and plaquenil, and adding Bactrim.
I just got the results of my most recent CD 57 and it's the lowest one so far! It was only 29. I had been up to 60 after the Ketek.
I know I need to tx Babs, but we are working on Bart right now, and my research agrees with my LLMD's that we need to hit Bart before going after Babs again.
You give me hope, so keep on updating us!
Hugs,
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