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When Will i Feel Better?

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Posted 4/26/2011 2:56 AM (GMT 0)
I know - that's a loaded question :(

I've just been dealing with feeling awful for 21.5 years now and only 7 months ago found out it was Lyme Disease - previously diagnosed with CFS, FM, lupus, MCS... I was on IV Invanz for 3 months - anyone else use Invanz? My doctor (an LLMD) was hesitant to go with Rocephin since I already have the beginnings of gall bladder problems. Just wondering if Invanz works as well... At the same time, I was on orals - alternating them every 2 weeks in various combinations.

Anyway - after the 3 months of Invanz, I was on orals only (had the PICC line pulled). First was Factive + Tindamax, then Mepron + Zithromax, and now Mepron + Ketek. My doctor also had me start taking NADH which is supposed to help with fatigue (I have NO energy and am SO sleepy all the time - feel like I'm fighting off a strong sedative.) Also started me on B-12 shots. It has been a few weeks now and I'm still not feeling much better.

When I was on the IV med, I had really started noticing a difference in how I felt - feeling more and more times of feeling "alert" and "awake" - my vision clears up, my thinking clears up, and I don't feel like I just want to SLEEP! I was getting pretty excited... But now it's worse again. Oh, I'm also doing IV IG treatments every 3 weeks - have had 3 treatments so far. I did notice after the 2nd one I felt that alert feeling happening again for about a week then it got worse again.

This is just SO frustrating! I know that having it for 21.5 years I've got to be patient. Just wondering how long it takes most people to feel at least SOME better? I just want to know this is "working"!! I'm going back to the LLMD this Thursday and just wondering if he'll change things up again...

Thanks for any info...

- Jacki
Posted 4/26/2011 11:25 AM (GMT 0)
A log-- as Lymster mentioned-- is a good idea. I keep one also. I mark down on a calendar how I feel each day and what symptoms are still gone and which ones are still nagging at me.

Nearing 7 months on abx-- now just Mepron and Azith (until my LLMD sees me next week and might change it) it is important to see how many good days I have and how many great days I have and how many bad days I have each month.

The goal is for the great/good/fair days to eventually outweigh the bad days. But the ups and downs are normal and part of the process.

I got many new symptoms during my treatment--- ones that I never had before. Lyme is full of surprises!

Early on when I was really sick, I let my body tell me what I needed to do. Mostly it was rest, rest, rest-- even though I wasn't particularly tired or overly sleepy.

Being patient is the key.....symptoms can diminish slowly (my brain fog took more than two months to clear up) or they will just suddenly be gone for good (my year long elbow pain completely disappeared overnight) ....or they will be gone only to crop up again.

It's been a crazy ride for me and I only had Lyme for about a year-- maybe a bit longer-- before I started treatment.

This month is the first one where my great/good/fair days are finally outweighing the bad days on a consistent basis. I thought it would never happen!

Unfortunately 'healing' from Lyme can be a slow and frustrating journey. The great, the good, the bad and the ugly! In any order! LOL Be patient and take care!
Posted 4/26/2011 12:10 PM (GMT 0)
It is such an individual thing, no one can predict when you will feel better. But you will feel better. It might be so gradual you hardly notice until one day you see that your worst days are now better than your previous best days! Sometimes an improvement can come as a dramatic "turn the corner" type sensation.

You have been on some powerful medicines administered in a rather aggressive fashion, no wonder your body wants rest. And 21.5 years is a long time to be infected, it is going to take time to get that out of your system.

It sounds like you are getting very good care, so do be patient and you'll be out of the woods soon.
Posted 4/26/2011 5:16 PM (GMT 0)
Thanks so much for the encouragement... I really appreciate it! I was keeping a log for the first couple of months but stopped because every day I was checking the same things and it seemed nothing was changing and it was discouraging me!! Maybe I should start back, though... I do know that "something" is changing in my body - and like you said, "little things" that I didn't even know were Lyme related have cleared up - like really bad heel pain and "pulled" hamstrings that kept happening. I think this must have been part of the Lyme because this has stopped.

I have NOT been good about "resting" - I take spells and do rest sometimes, but most of the time I tend to push myself. I probably should give myself a break and just REST. I think after being so sick for so long I've just learned to adapt and push myself or nothing would ever get done! But I think I need to change that mentality to if I'll just REST now - then that would have to help my healing process which eventually would allow me to do a lot more :)
Posted 4/26/2011 8:11 PM (GMT 0)
I pretty much did the same treatment as you but only had 2 months of Invanz. I don't feel any better at all, is your Dr in Tampa by any chance?

Susie

Posted 4/26/2011 8:52 PM (GMT 0)

susieq64 said...
I pretty much did the same treatment as you but only had 2 months of Invanz. I don't feel any better at all, is your Dr in Tampa by any chance?
Susie

Yes, he is.
Posted 4/26/2011 9:07 PM (GMT 0)
Pushing yourself with lyme is the worst thing to do. You might think you are babying yourself or complaining by resting but it is really the best thing. I NEVER push myself anymore. It is just not worth it. With a disease that can be as devastating as lyme, it will take a long time before you feel "better." As my dr. described it, it is like climbing a mountain, there will be lots of hills and valleys but as long as you don't fall all the way back down, you are making progress. Don't forget, lyme cycles ever 28 days or so so maybe you are feeling better and then worse when the bacteria cycle. Also, detoxing is so important. I used to think people were crazy (Lol) saying to detox as I had never thought I "needed" it. Drinking lots of lemon water, taking magnesium and watching what I eat all have helped me. I am two years on antibiotics and am getting there, slowly but surely. Hang in there, you'll get there too. (Do you have any co-infections and if so, have you ever been on doxy?)
Posted 4/26/2011 9:13 PM (GMT 0)
He's my Dr too. Do you live in FL?
Susie
Posted 4/26/2011 9:44 PM (GMT 0)
Yes, Susie - I'm in Tallahassee. We'll be traveling back to Tampa this Thursday! How long have you been getting treated for Lyme? Are you feeling any better at all yet?
Posted 4/26/2011 9:49 PM (GMT 0)
Springsjean, Thanks for the tips! I am definitely going to work on that mindset of rest being a GOOD thing :)

Yes, he feels I have Bartonella and Babesia in addition to the Lyme. I tested negative for both, but my symptoms definitely point towards these co-infections. As I understand it, when you've had it a long time like I have, the immune system is very suppressed so the tests will show negative when you really have it...?

Yes, I was on Doxy at first, treated by my local naturopath. Was on 100 mg. twice a day for 7 weeks before seeing my LLMD for the first time. Then he switched me to the Invanz. The orals I was rotating every 2 weeks were:

Tindamax - 2 weeks
Alinia - 2 weeks
Mepron/Zithromax - 2 weeks

Then start the cycle over...
Posted 4/27/2011 1:07 PM (GMT 0)
HI Jacki:

I have been on Antibiotics since last Sept and I am not doing any better. I too have Bart and Babesia. I had to have my line pulled two weeks ago due to a problem with clotting (but I couldn't afford the treatment anyway as my insurance refused to pay). I was just on Factive/Alinia for the 2nd time but had to stop as I developed a tendon problem behind my knee, I am having a ultrasound today to see what kind of damage there is before Dr C continues treatment. My cd57 and C4a are worse now than when I started treatment. I would have prefferred to have been given Rocephin but Dr C did not want to fry my gall bladder. I am going to start a herbal protocol to work along side the antibitics. (Buhners).
Susie
Posted 4/27/2011 7:31 PM (GMT 0)
As an encouragement to rest, some very knowledgeable LLMD's will require and insist that their patients not only get a good 9 hours of sleep, but take a two hour nap as well!!

Springsjean gave some great advice!
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