posted
I have been on abx treatment for 3.5 months. Doxy, ceftin, zithro, flagyl (all separately not at the same time) and just started clindy/quinine.
I am becoming concerned about my progress as there seems to be very little progress. I feel like I am regressing as time goes on.
No relief for many of my "normal" symptoms. New symptoms are popping up. Feels like the bacteria is growing in my head and in my chest. Increased heart palpitations while on a beta blocker.
This past week, my evenings have been unbearable. Increase twitching/tremors and unable to walk. If you looked at me you would think I had MS. It feels like I have partial seizures although I am coherent just completely zoned, eyes closed, arms twitching and some times my legs twitch.
I certainly understand herxing and how it works...sometimes I wonder if I am herxing or if it is me not getting better. When I give myself a break from the ABX I don't really get better.
At this point in time my gut is giving me the feeling that I am not getting better, because of the little improvement, and worsening of symptoms (heart, head pain, eye floaters, hearing, short of breath, mad surges in head, on and on.) that don't seem to be getting better
I contacted my LLMD and consideration of IV antibiotics could be my next step considering my lack of progress. I would need to be on an ACE inhibitor instead of a beta blocker.
My heart issues are due to TBD, my first symptom was heart palpitations. I have had all heart tests done including a TTT and all have been normal.
I'll do whatever it takes to get me well, to have a better quality of life like so many of you have achieved.
IV antibiotics feels like a whole new territory and is scary for me.
I am scared to have a picc line. Sounds like many of you administer the antibiotics yourself...this is scary to me too.
I don't know how the whole system works:
who administers the picc line? where do I go to have this done? who monitors me? what if I have issues with my heart with IV? how does insurance work? Is it even a viable option? I here it is expensive. What are the herxes like? Are they instant? Is this the route I need to go to get better, quicker? Will I respond better versus orals?
As you can see I could use some support and advice. I know I am asking the right people. You all have been so helpful in my journey so far. I am truly thankful for this community.
-------------------- Tick Bite: March 2011 ABX Treatment: August 2011 Diagnosed: September 2011 Posts: 137 | From God's Got This! | Registered: Aug 2011
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gmb
Unregistered
posted
Google the booklet "Infussion for Lymies" which will answer some of your questions.
Most all of us have struggled with the IV treatment option question.
Yes, it is expensive if you don't have one of the best Health Insurance plans, and don't live in one of the five or so Lyme Friendly health care states.
There is no one formular to fighting Lyme and Co's. Everyone responds differently. 3.5 months is not that long into your treatmemt.
You have been lucky in detecting the disease and started treatment early. Finding the right LLMD to treat agressively will be key in your recovery.
I've been treating for almost two years, and will start IV in a few weeks.
posted
How many days at at time have you taken a break? I didn't feel even a tad better after one year .. only worse... at 18 mo I thought I might be onto something, by year two I started turning the corner.
Then was treated another 2 yrs. So no, 3.5 months is nothing to be concerned about. I think my herxing really began to rev up about then.
But .. in the end .. it's all in your court. You have to decide what is best for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lymetoo - my ABX breaks have been 1 day, 3 days, 6 days.
Would treatment be different for recent tick bites versus chronic?
-------------------- Tick Bite: March 2011 ABX Treatment: August 2011 Diagnosed: September 2011 Posts: 137 | From God's Got This! | Registered: Aug 2011
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It is my personal opinion (and many will disagree) that if we hit this with IV much sooner, many more of us would get well. Even the IDSA guidelines say if we have any neuro involvement, IV is indicated right away, yet few of us get that.
All four of my family members made zero progress until we went on IV. I feel we wasted years on orals and that IV was the only solution. I would tell everyone that if you have been sick a while, you need IV off the bat. Why mess around and waste time? If you haven't been sick that long, give orals a try but I would not spend more than six months on them before resorting to IV. I just don't see the point in letting the spirochetes get more and more entrenched in our bodies when we have the tools to hit them hard and fast.
Why wait? IV works better. I've seen it and felt it firsthand. I don't get why we don't jump on it sooner. I think a lot of us would be better.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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