posted
I am well into my 2nd week on zithromax & mepron for babesia and lyme. Start Plaquenil in a few days..."cystbuster"?
I have had a couple days where I thought I felt some of it lift, especially mental/depressive stuff, and could actually interact, feel a fraction of my old self...but then things started changing again
now I feel the shakes returning, shooting pain all over (face included), numbness, and thoractic and cervical discs firing up to top it off. Oh yeah I've also got the knarly rotator cuff impingement or whatever it has become feels just like a freaking bayonet wound....sleep in any position is almost impossible, even with all the neurontin, ambien, IBU, and Vicodin I've been alternating.
I'm sick of complaining to my wife, I feel like she's in her own separate (happy) world anyway, and I don't want to scare the kids...but I am scared !@#$less. People at work act somewhat sympathetic but don't have a clue. I don't know if I can hold on to my job at this rate, I don't know if the disc/shoulder degeneration is going to cripple me (I can't do steroids or surgery with the lyme even if I wanted to, anyway)
I was really hoping my 5 year old might be able to remember how her daddy used to win races...I hate to think about the memory she may end up with.
OK sorry for the wallowing...I have to have faith things will get better.
or this is just too much.
LocalMan
[ 04. October 2007, 08:36 PM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It often gets worse before it gets better. You are having a herx reaction. The increased symptoms are are a result of the toxins released from the die off of the Lyme and Babesia.
If it gets intolerable, then you might need to cut back on antibiotics.
Lyme treatment isn't a race. You can't expect to be better in a few weeks. But stick with it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sounds like a major herx to me too.
However, just to be sure, you should call your LLMD.
Don't worry about what your five year old will remember.
They will remember that you love them. That really is the most important.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I remember having those peeks or reminders of wellness. Sometimes I would think now how in the world can someone so sick on minute, feel totally well the next minute? Realizing I wasn't crazy.
I also used to think they were teasers. Then one day I decided they were goals. I was going to get to that place where these periods of wellness were longer and longer. Then I could enjoy them.
I do enjoy them today. But the truth is now those bad periods can be just around the corner???? Maybe tomorrow, tonight, usually in a pattern.
But I keep on going for looking for ways to achieve those goals. Aaahhhhh
It gets better. For you, maybe tonight?????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I hope you are feeling better soon, LM! It's really rough. Some days are a total nightmare. Others you'll feel good...just hang in there until the good days outnumber the bad.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thanks you guys. That little glimpse of wellness was tough, especially when it is followed by all this neuro-BS. The Neuro and the discs really worry me. The shaking isn't much fun either. BUt I guess you know that.
Posts: 212 | From Eastern CA | Registered: Apr 2007
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posted
I have total sympathy with your anxiety and pain. Sleep loss and chronic pain, day and night, can exhaust and freak anyone out, when no one can say when it will get better. I felt the same way on Monday this week. Just sat down on my kitchen floor and sobbed from the misery. But then I got in to see my doctor on Tuesday. He stopped all my abx immediately, and started a different treatment, and whoopee...immediate relief. I don't know how long it will last, but I am thankful today. Hold on!!
Posts: 5 | From maryland | Registered: Sep 2007
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yeah I wish I knew how much "herx" is good before it becomes just plain bad....is it all just dependant on how much you can handle?
I am starting to cry again, easily, without even really knowing it sometimes, even when I'm half asleep. BUt it's so early in my treatment I feel I need to press on.
LocalMan (I might need to change moniker to LocOMan).
Posts: 212 | From Eastern CA | Registered: Apr 2007
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quote:Originally posted by LocalMan: I wish I knew how much "herx" is good before it becomes just plain bad....is it all just dependant on how much you can handle?
In my opinion, yes!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hang in there! I have terrible degenerative disc disease and know exactly what you mean by that "bayonet" pain. I think for at least 3 years I had one spot where it felt like someone was stabbing me, it never went away no matter what I took. I was on tons of pain meds for years. With treatment for Lyme and Babs I am now pain med free and back in life. It can happen.
The journey is hard, once you have some good days the bad days seem so much worse.
You are killing the little buggers, hang in there!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Local Man:
Sorry you are not feeling well. It really sounds like a herx -- in fact, it sounds like MY herx.
The timing is perfect. Two weeks after starting tx is exactly when you really start feeling it, in my experience.
Hang in there. The good news about herxing is that it is a sign that you are killing off the parasites, in this case babs and borrelia, that you want to kill! I have been in treatment for 15 months, and always found that real improvement is preceded by feeling much worse.
I wish it weren't that way, but it is for TBD treatment. Just take one day at a time, and speak with your llmd about cutting back on treatment if the going gets too rough.
What helped me at this stage was detoxing meds (I take Welchol in the middle of the day, away from abx); saunas; warm baths with epsom salts and baking soda; and lots of extra rest. It took me 2 months before taking malarone (which has the same ingredient as mepron) didn't totally kick my butt and make me unfunctional. Then it got much better.
You will get better if you continue treatment, hang in there!
Posts: 2557 | From home | Registered: Aug 2006
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posted
Thanks Vermont, and the rest of you, for your caring comments.
It's good to feel some positive energy after feeling so discouraged last few days. I let the NEJM article, and a recent revelation (?) that the one other person to contract lyme locally has been in treatment 8+ years really bring me down. My symptoms/herxing are just icing on the cake.
I really need to hang on to the positive and let go of the negative. But my anger is so deep right now...it's very hard to let go. Misery, on the other hand...I am more than willing to let go.
Thanks, LocalMan PS > It seems threads get buried so quickly here, but this has been a meaningful exchange for me...maybe we can keep it going?
Posts: 212 | From Eastern CA | Registered: Apr 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Vermont Lymie said:
quote:It took me 2 months before taking malarone (which has the same ingredient as mepron) didn't totally kick my butt and make me unfunctional. Then it got much better.
Thanks! I needed to hear that! I'm into my third cycle of Mepron and the herxes are so long and hard I have a hard time staying up myself.
I also have the emotional lability you describe.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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