lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have been on Amoxi/Biaxin over a year and was doing really well. LLMD decided last fall to add in Bicillin. I felt great at first then the herx from the pit of.... hit and I had to stop the Bicillin 6 weeks into it because it started an excruciating pain under my left ribcage, that still hurts all these months later.
Since then, nothing has been the same. I wish I would have never added Bicillin. The good it did do was it immediately cleared bone pain, joint pain & stiff neck, but neuropathy was out of control and then dizziness set in...that was it for me.
It took 2 months for my body to settle down to pre-bicillin state. I kept on w/Biaxin and Amoxi.
NOW - new symptoms are emerging and old - this is not a herx, trust me. I am on my old familiar meds and they just aren't working I guess like they did.
My joint pain in the night is UNREAL! I will wake up with my knee up and it is literally locked and SOOOOOOOOO painful I want to scream, sometimes it happens to my elbow. I have to gently take my hands and move it slowly down and straight again. My neck is becoming stiff again with pain from the back of my head to my shoulder blade. Now, just yesterday this new sparking sensation in my low-middle spine began.
I can go back on Bicillin - BUT it also seems to make other Bart like symptoms emerge, heel pain and neuropathy worsened. (LLMD's say I am clear of Bart and Babs, only co-infection is Ehrlichia).
I swear, I am so afraid I am going to wake up and not be able to move my legs. I have had neuro LD for almost 2 years, yet no IV (which I cannot believe!) and LLMD's keep messing around with orals on me like I am some experiment. I want IV and need it.
I have 2 doctor's and no help...I don't know what to do - how can new symptoms emerge this late in the game during treatment?
Finally, I am now experiencing intolerance to change of oral abx, I try, but I have a horrible pain under my rib cage that is just unbearable and I have to stop, bicillin actually created this pain, feels like a hole burned through me. Ab ultra sound showed nothing.
I am really scared. LLMD's - one says Azithro/Flagyl - that makes me want to to even think of that with my nerve pain scares me to death, I don't think I could get those both in my mouth.
The other says get back on Bicillin with Biaxin again...that makes me want to
I need help and likely med change fast, I feel myself slipping .....God this is scary.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Babs did that to me...I'd wake up with my knee so painful I had to work it down and it took a few minutes to be able to walk.
....I guess it was babs because artemesinin seemed to be effective in alleviating it.
ever tried bactrim??
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Charlie, Babs? Really? I just ordered Artemisinin just in case.
Heard of Bactrim, but LLMD's have not recommended it, I hear it is great, does it help with neuro lyme, neuropathy, sparking pain I wonder. Thanks for input.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
LymeBytes, you said you have Ehrlichiosis & piercing bone pain can be that. I would treat it- it should always be treated thoroughly, it can make neuro Lyme worse. I think of Ehrlichiosis as "The Forgotten TBD" because people think of Babesiosis and Bart now, but Ehrlichiosis is underestimated I think!!! Anyway, if you still test + for it with all the abx you've been on, it would be good to have it treated!!!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi bytes,
I am so sorry to hear that you are suffering like that. It really sounds like you should be on IV.
Only have one small suggestion....When my llmd put me on plaquenil (which works well with biaxin according to Dr. B), I was given an article about plaquenil resolving arthritis/joint pain in a very severe case.
My joint pain is diminished since starting plaquenil about 5 months ago, and although I am also taking mino and bicillin I think that the plaquenil specifically helped with this.
I know that I had to switch doctors also until I found the best one for me to work with....it made a huge difference in my treatment and progress....I also had new symptoms, or pain in new places emerge during treatment.
Keeping you in my thoughts and hoping that you feel better soon. Can you get any temporary relief from hot baths and acupuncture for the muscle/joint pain? I take advil when I need to for shoulder and neck pain, but do not like to recommend it to others due to its side-effects...
posted
You've been given good advice. Maybe you need a break for a day or two??
Hang in there, my friend!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Well, the Azith/Flagyl combo is suppose to 'cure' Ehrlichiosis. I never heard this until Dr. S in SF said it does.
The problem with it, it causes neuropathy and warns to stop if neuropathy begins, well I already have neuropathy, how am I suppose to know if I am creating perm damage or not on this weird combo?
I have doxy in the house and only tried it once, was that a weird experience. First stomach acid horribly, then nerve pain like I have never felt followed by sleepless night of nightmare-hallucinations. Are those side effects or herx? All I know it scared me to death. Is Doryx any gentlier on the gut and the herx? So expensive, I know there are other generic doxy tablets, they just aren't delayed release - anyone try generic doxy tablets??
I also have Rifampin in the house, haven't tried it, but hear it is very hard and it was once suggested.
These abx were all prescribed and then shelved as symptoms changed so fast or didn't agree with me. This is what I mean, I am at the point orals aren't working or tolerable.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Well none of us knows what does what exactly, and I have an idea Sarah has researched symptomatology much more thoroughly than I.
I don't know what treats ehrlichia other than doxy though....and I expect you've had a bunch of that.
I'm just remembering that a nice lady (and Sarah's friend) in CA and I exchanged missives back around 2000 that with bactrim we could run up the stairs without pain. Like it was a joy to use the knees.
Wonder how Lorie is doing? I of course lost touch like we all do.
If you can get bactrim and can tolerate sulfa it's worth a try.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
OOPS I was laboriously typing and got one post behind.
You can start slow on the doxy...It never did anything for (or to) me.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
This being the point of winter when vitamin D level bottoms out, I would check that first.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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WildCondor
Unregistered
posted
Hi there!
Can you please tell us what doses of Biaxin and Amoxicillin you are taking? Are you taking Augmentin XR along with the Amoxicillin to keep your blood levels high enough on the Amoxicillin? Are you having your peak and trough levels measured on Amoxicillin. The Bicillin was obviously used to keep your blood levels of penicillin high enough to treat the Lyme. Going off it, you probably do not have enough in yoru system. What is the Biaxin dose?
You can add Flagyl to the Amoxy/Biaxin. I took that, and I did Bicillin shots instead or oral Amoxicillin. If you can't take oral Zithro for some reason, you can do that IV, and then use Flagyl orally and pulsed. That combination worked wonders for me, but I also took the Bicillin 3-4x per week while on IV and Flagyl too. You may very well stay on your current protocol but the doses may need increasing. Have you ever been on high dose Doxycycline? You mentioned Ehrlichia, so that's why I ask.
Ok, let me know! Hang in there, you just need to get back on a stronger protocol and you will be ok. Stay strong. These ups and downs are normal, and it will get better.
Also, was it determined that that rib pain was a side effect of Bicillin, or an intense herx?
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi LB --
Sounds like you are herxing -- This is Normal --
During treatment - New symptoms will appear - and Old ones will Lesson --
Every Body goes threw it --
I agree with Charley -- Bactrim DS --
IM surprised Charley has not told you about Drinking TONIC WATER -MMMMMmmmmmnnn
Charley Likes the taste --
But to me it tastes like a mixture of Ditch Water and Dumpster Juice to me ---
Tonic Water Duzz Help Alot --
I have drank about 500 bottles --
Tasty -- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Vit D checked extremely low - but on the way back up again with supplementation.
Oh, believe me I know about herxing, it is all I've done for 20 months straight, insanity!
Yes, I actually mix tonic water w/juice, I love it. Thanks again - appreciated!
posted
How low was it and how much of exactly what are you supplementing? If your symptoms are worsening while the level is increasing (only verifiable by retesting, you cannot assume that swallowing it means it is being absorbed!) then you could be 'herxing' or at least undergoing a major metabolic shift.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
Also if you are taking the 50,000 IU D2 and your symptoms are worsening, you should switch immediately to a naturally occurring D3 at a lower dose...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
how awful, i feel for you, poor dear.... wish i knew more and could help..
maybe gentle stretching during the day, and dont forget your epsom baths-- they help my hip stiffness.
im hating bicillin right now too. but i have 2 more months before dr. s will give me my IV. i can't wait.
i've been really happy with my fentanyl patches for pain btw... so much betgter than morphine or hydrocodone. maybe you want to consider??
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
BTW i got a promise for iv only after i produced a trashy spect scan and my mother accompanied me to the appt-- she made it clear current protocal is NOT working. maybe bring hubby next time for reinforcement??
Posts: 390 | From Oakland, CA | Registered: May 2007
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to even think of that with my nerve pain scares me to death, I don't think I could get those both in my mouth.![[toilet]](graemlins/toilet.gif)
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