posted
Hi all been lurking but now Im posting he is my story and my life is very F'd up right now I need help figuring out what im up against.
Pulled a tick off me in july 2011(In VA) Started getting headaches 3 weeks later which turned into flu like symptoms and very loud popping noises in my ears.
Was on doxy in august till sept but had to stop because it impaired my vision. I do remember getting sick 1 week a month or so not sure if that was herxing or not but never had a normal feeling day on it.
*have never tested positive to date. *Started seeing a LLMD in mid-sept, I was put on ceftin and zithromax. We have slowy ramped up to 1500mg ceftin per day and 600mg zithromax a day but never got a herx and felt sick everyday. We then added Rifampin 2x a day for one week every other week, I stared that around XMAS. Now I have been pretty much bedridden for last 7-10 days Is this my first big herx? I have alot off my symptoms back from the 1st month and some have gotten 10 fold worse like depression and anxiety.
Im stating on the IV next week, I have to get better my family needs me back.
It appears I have a really aggressive case but I did figure it out pretty quick. I just cant figure out the herxing and being sick every damn day.
WHAT AM I UP AGAINST?
PS here is my list of symptoms now.
Severe Fatigue Buring/blurry eyes calf muscle spasms in bed hand fall asleep and arms tingle and get hot in bed. Jaw and teeth hurt, almost feels like lock jaw. Severe anxiety and depression ( These suck the worst)
Thanks everyone.
Posts: 10 | From Maryland | Registered: Jan 2012
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Aw Caveman...there is no straight answer for your question here.
The fact that you have a LLMD is a huge plus. The fact that you figured it out rather quickly is a huge plus.
My daughter was always so sick on abxs. She never felt good and I always was trying to figure out if she was herxing or if it was Lyme itself or the abx causing the upset...never was quite sure and never did figure it out totally.
IV is a good thing and I have read that many get a lot better doing that too, so I guess you will have to play the stupid wait and see game on that.
I wish I could tell you that you will be well after such and such...but no one can tell you that honestly.
Many do get well relatively quickly and many take more time...it depends on so very much.
You are taking tried and true steps to success, so you have a better chance than some in getting better relatively quick.
Hold on...Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
My heart goes out to you. You've asked the million dollar question, and I would like to know the same.
Like momindeep said, hang in there. Push through it. We are rooting for you!
Hugs GlitchyMomma
-------------------- GlitchyMomma Hashimoto's Thyroiditis dx July 2003 Cholecystectomy March 2010 Vit D3 Deficiency 2011 Progesterone Deficiency 2011 Adrenal Fatigue September 2011 Labcorp IgG 23 Positive, IgM 39 Positive, IgM 41 positive January 2012 Posts: 31 | From Louisiana | Registered: Jan 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
caveman,
Google parasite symptoms and check the symptom list at Humaworm.
These ticks have been found to be carrying parasites/worms. I would also do a search on here for parasites and check out the salt/c protocol.
The group at lymestrategies are doing this among other things to get well. Antiparasitics and salt/c was what turned the corner for me after 4 yrs of abx.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Have you asked your doc about the anxiety and depression? Sometimes the meds can mess with you and sometimes a low dose anti depressant can help.
Sorry you are feeling this bad...it just isn't fun at all.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt read all here but it sounds like you have a good llmd so i would say stick with them and be a really good patient. it does sound like a bad case...but you got it pretty early.
feeling sick one week a month suggests that you got lyme from that one tick bite. thats easier to tx than when you get many bites over time
rifampin does give many a hard time with depression/anxiety...i was suicidal but had a friend stay close, started at low dose and in 3 weeks worked up to full dose and the suicide stuff went away. i was so glad i tuffed it out cuz i got rid of so much pain with that drug. i think many have similar story
theres lots of things: parasites, mold, metals...all kinds of things. but i would trust your doc and follow his lead for yr or so or until you are not getting any better
if that happens talk to some real experienced lymies to see what to do next-or you may know what to do if your fog gets better and you have been educating yourself
i think many new patients read stuff on here(LN) and want to do everything at once but (imo) it is really better to get a good doc and do it in the order he says...
i wouldnt have said that if it didnt sound like you had a good llmd
there are some good things you can do on your own...like no smoking or alchol...and low or no sugar and yeast
and read burrascano and some of the other stuff...
and keep coming back! we're here for you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I know it sucks feeling so sick, but you are VERY blessed to have gotten help so soon.
Maybe you could give your LLMD a call just to make sure that they don't want you to back off of anything. I know that Rifampin can be quite hard on people.
Hopefully you will get some relief from the IV's. That's been the only thing to make a difference in my daughter. She had undiagnosed LD for about 10 years before starting treatment.
Hang in there!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Im pretty sure I have read on here that Alka Seltzer Gold has helped alot of people with their symptoms. It helps me!
Posts: 137 | From Illinois | Registered: Jan 2010
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posted
First off thanks for all the responses im so damn confused. I stoped taking the rifampin 6 days ago, and stoped the ceftin/zith 3 days ago and im still feeling terrible, Im hoping and praying this is a big herx and it will pass soon, the anxiety is out of control. Im having symptoms that I havent had since the first month, feel like im possessed my the devil at times its the worst in the am as im lying in bed. I forgot to mention Im down 40lbs and have no appetite, fruit and a bowl a cereal per day is all i can muster up.(For last week)
If this is a herx from the 2 weeks of rifampin how long can it last?
Posts: 10 | From Maryland | Registered: Jan 2012
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Rifampin can cause you to feel bad for a while from what I've read on here of others who have had trouble with it.
My suggestion would be to call your doctor. They can guide you as to what meds to start and stop.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
go read runner17s thread..."one year ago"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I forgot to mention Im down 40lbs and have no appetite, fruit and a bowl a cereal per day is all i can muster up.(For last week)
If this is a herx from the 2 weeks of rifampin how long can it last?
- The herxing usually subsides when going off the meds. Did you call your doctor yet??
Find some SAFE foods. You are in this for the long haul. Stay away from cereals and fruit. You will grow yeast in your intestinal tract (and mouth too) if you continue eating this way.
Did the dr put you on good probiotics??
When you get back on the antibiotics, be sure to take them with plenty of (safe) food.
Eat proteins and green vegetables for the most part.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
did you see lou b's post above on progress and success stories?
i had to start my rifampin lower than prescribed and slowly build up. in 3 weeks i was up to full dose and tolerating it-but i was suicidal at first and had close friend watch me
early morning anx is common for lyme. i find vistaril helps me alot. its an old drug-i asked for it cuz it helped my mom who was very sick with lyme
only the real vistaril works for me-the generic is missing one importatn ingredient
good luck to you. hang in.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
yes I am on probiotics , fruit is all I can get down i have to eat something, I started feeling better yesterday but kinda woke up crappy I think its starting to pass. Looks like im left with sinus pressure and headache which is what I had at the very start. Crazy
Posts: 10 | From Maryland | Registered: Jan 2012
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