I am so bummed and scared. I went off abx at the beginning of the month after being symptom free for 12 weeks and on Zithro for 6 months. I rapidly declined.
Now I'm on amox. I drove for the first time today in 2 weeks to go to a meeting--work related. Couldn't focus, couldn't pay attention, felt like I wasn't contributing, VERY hard to drive home, probably shouldn't have been driving.
Came home and tried to work on client matters. Basically feel incompetent. Very hard to give children time and energy they need. So I feel incompetent at work, as a parent. Tried to cook dinner. Had a very hard time determining the order in which things should be done. Do I braise the porkchop or put up the potatoes first?
Couldn't remember words multiple times in a short time. Even now, transposing many letters. I'm scared and I feel like my life is slipping away. I am an attorney in solo practice and I live in a rural area so not driving is debilitating.
My DH and I had an argument the other night because I'm too "obsessed" with my situation. Now when he comes home from work and asks how I'm doing I want to just run away. I don't know what the heck to say. I'm CRAPPY and I'm afraid that I am going to wind up completely incapacitated.
UUUGGGHHH.
Posted by fetz (Member # 11843) on :
I am so sorry that you are feeling this way! It sounds like you are someone that has very high expectations of yourself. I do as well, and also struggle with the worry of what will happen if/when the illness worsens.
It is difficult to be all things for all people, especially when you feel that no one else will be able to fill in or pick up the pieces.
I will pray that tomorrow you feel a strength and optimism that is not your own (at this moment).
Posted by Geneal (Member # 10375) on :
I am sorry you are having such a tough time.
Maybe Lyme symptoms coming back?
I know my LLMD has a protocol for stopping treatment.
We stay on antibiotics for 2-3 months until symptom free.
Then we take 1500mg of flagyl on Monday.
Then 1500mg of biaxin on Tuesday.
If no herx, repeat for up to 8 weeks.
If at any time symptoms come back or we herx....then it is back to the antibiotics.
I can imagine how disappointed you are.
Still, I would give my right leg for 8 glorious symptom free weeks.
Don't give in and don't give up.
I don't see how you can't be a little obsessed about this disease.
It is a part of our lives.
It affects how we feel emotionally, physically and mentally.
Sending you Angels to wrap their wings around you and prayers.
Hold on.
Hugs,
Geneal
Posted by Wisconsin (Member # 14522) on :
Oh, please don't don't give up. I'll tell you what my doctor told me when I was feeling hopeless about our son. "You have not exhausted all of your options."
Our son can't maintain good health off of antibiotics either. That's why now we're using combinations of antibiotics, rife and Stephen Bruhner Protocol (not all at the same time). After one week on the protocol, we're seeing improvement. I have no idea if this coincidental or significant, time will tell. I'm just trying to be helpful.
Do you feel like you've researched everything?
I would love to help you if I could. I think you can get your health back. I really do.
As far as your DH, I'm sure you know that our actions aren't always an accurate reflection of our feelings. Try not to run away. Keep communicating, for your own sake.
Posted by CD57 (Member # 11749) on :
Hi there, Is it possible that you were not treated for something that may be contributing to this? Like co-infections? I note that you said Zith for 6 months. Perhaps this would be worth exploring with your LLMD?
Completely understand about the argument...I have had many of those with my family. We have a small son who needs a lot of attention. Juggling this illness and family and career is really really difficult.
As someone said here "you have not exhausted all of your options". No way!
Posted by catskillmamala (Member # 12536) on :
Thanks folks. I have two good LLMDs here in NY who are sort of collaborating on my tx (both Dr. C's one of them is with Dr.B&B). They both feel that orals are sufficient right now and agree on amox.
We have blood out to Igenex for Bart and Babs, but I don't have any "specific" sx. The good news is that they say if I got back on my feet, I can do it again.
I am also doing some herbs (Cats Claw), COQ10, fish oil, multivitamins, etc., etc. Strict diet, exercise, sleep, etc.
In all honesty, I my sx are not as bad as many here, but I still find this board the MOST useful place to get medical and other information that's lyme related.
My issues seem to be largely brain-related. My goal is to get back to 100% and put my legal probono work into lyme treatment work.
Posted by CaliforniaLyme (Member # 7136) on :
You are on a bunch of stuff so I would check out and make sure nothing is interfering with other stuff!!! Mamala, you WILL get better- you are in good hands- your own!*)! And those LLMDs, sound like good ones. If someone has kept on with treatment as you have, I have rarely if ever seen no progress- and those were relapsing fever people-!! So I have faith you will get better. Very Sincerely, Sarah
Posted by adamm (Member # 11910) on :
Were you treated for co-infections?
Posted by bettyg (Member # 6147) on :
quote:Originally posted by catskillmamala:
In all honesty, my sx are not as bad as many here, but I still find this board the MOST useful place to get medical and other information that's lyme related.
My issues seem to be largely brain-related.
My goal is to get back to 100% and put my legal probono work into lyme treatment work.
*************************************
catskill,
So sorry you are experiencing what EVERY ONE OF HAS! So you couldn't be in better hands and more support than you could ever wish for. We are WALKING IN YOUR SHOES; whether they are narrow or EXTRA WIDE width!
At least you have good llmds working with you.
I didn't go back to past posts; how long have you had lyme symptoms or saw the tick that bite you?
lyme teaches us all PATIENCE! as a lawyer, YOU are used to being in command; here; lyme is no. 1, and we learn to deal with it one step at a time until we are on equal playing field.
I loved the ending of your post where you stated, whenever you get your lyme under control and in REMISSION, you will offer pro bono/FREE help to the lyme community!
God bless you for this wonderful and generous statement!
We need dozens of folks like yourself to help us on a civil group claim on the injustices of health insurances discriminating on lyme/co-infections and NOT paying what they should be forcing people into bankruptcy and homelessness!
best wishes cat! Posted by TheCrimeOfLyme (Member # 4019) on :
Did you just start the amoxy? you could very well be herxing. Amoxy was my first drug of choice ( dosage HAS to be up over 3000 mg a day on that one), and my herxes were ( and still are to some degree) pretty much still like that.
It could just be the new med getting to a different area of amoxy. Amoxy cleans the blood of lyme and targets ONE FORM. Zith targets something else, but I forget. I mean it targets lyme, but more in the tissues I believe and the L form of lyme I THINK. Then again, I have lyme. LOL. They can be looked up on the internet though,
what drugs penetrate there and what drugs penetrate what FORM of lyme. Lyme has THREE FORMS. You have to treat all three forms + cyst, and coinfections, or remission is inevitable in most cases.
I hoped this helped some. I am on amoxy now and going through the same symptoms.
Posted by mtree (Member # 14305) on :
catskill....
i hope your doing a bit better.....
feeling incompetent is the worst feeling......even just to be able to
put a meal together......
take comfort in knowing that we have all been there......
i was symptom free for years....but cured...
back on Doxcy though now......
....feeling horrible.........
but i think that its a herx..........
the only advice i have with your husband is maybe he could go with you to some doctor appointments....
this has helped us .....this way he can ask questions.....
also......i would tell him what you just said to us.....
I'm CRAPPY and I'm afraid that I am going to wind up completely incapacitated.
i just said to my husband recently........
i'm tired of feeling sick.....i'm tired of this life style..........and i'm scared.....
and i don't feel like being a good patient today......
i want to be someone else today........
he backed off........
i think ....we really have to be honest with our spouses......and tell them how we ar truly feeling.....
we did not choose this and we are doing everything we are supposed to do.
i also said to my husband.....that I'm trying.....and doing the best i can....
i think he needed to hear that too.
anyway...... you will feel better.... stay on the meds.......don't beat yourself up....
your doing great.....your doing everything your supposed to do........your trying.....
mtree
Posted by catskillmamala (Member # 12536) on :
Update: I was able to cook dinner tonight!! But my eyes seem only to focus on their own about 15% of the time. The rest of the time is fuzzy and if I concentrate on focusing, I can usually get it.
I'm also feeling weird tingling in my cheeks and some joint pain, major fatigue. I hope it's a herx, but right now it feels like a continuation of the relapse.
DH seems a little more understanding. For my own sanity, I went back to my blood work today. I was positive on IgM IGeneX Western blot bands 28, 30, 41 and 66, and indeterminate on 34 and 39. I know it's not CDC, but still, there's something.
Yes, I know about the three forms of Borrelia (Buhner was great for explainign the bug's lifecycle). I'm only on amox. now and I am in that place where I HAVE to trust my LLMD's. I assume they may do other rx later.
Thanks everyone for your comments. It really is a huge help. I can't believe how many people must be un-dx. Honestly, if my kids didn't get lyme first, I never would have researched. And then I probably would have chased down the wrong road on my own sx which could be "getting old" or "being depressed".
Posted by catskillmamala (Member # 12536) on :
I forgot to add to Betty's questions:
I've had 6-7 tick bites over the last 8 years, since I moved to this house. there are acres of fields here and I was uneducated--I had cats with a catdoor, going in the field and then laying in my bed. DOH!!
I think I may have had sx as long as 6 years ago (mostly sound and light sensitivity) but I didn't know because everything else was high functioning. But it was about 6 years ago that I jsut said "no more NPR radio in the kitchen." I couldn't take it.
Also, I was pregnant or taking care of babies and I would HAVE to nap. To the point where I would feel literally BLINDED with exhaustion. I always chalked it up to lack of sleep, but now I'm not so sure.
Posted by mrs.scrappy (Member # 14520) on :
Catskill,
Glad you are feeling a bit better.
Can you come up with a few really easy recipes for days when you feel real bad?
My dh is the one with Lyme and he does all the cooking. I work FAR away from our home.
I can usually tell how bad he is feeling when I get home at night by what he has cooked.
Grilled pork chops, a side veggie, a salad - means a good day.
Turkey burgers and microwave popcorn - a not very good day.
Last week he served sandwiches for the first time in our 16 year marriage with glasses of tap water.
That's when I called the LLMD's office and begged for an earlier appointment. I knew he was in a bad way.
PM me if you want 3 or 4 really easy, but very healthy recipes that you can cook blindfolded if needed.
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mtree