posted
I'm beginning my third week on Levaquin for Bart. I have muscle, joint and tendon aches that move around from day to day and even from hour to hour. At times it's pretty uncomfortable. I'm not having any one spot flare continuously so I'm not so concerned about blowing out a tendon, but I do have some questions.
Since NSAIDs are contraindicated with Levaquin, what did you take for the aches?
With meds for LD and Babs, I saw a correlation between the sx I had pre-tx, the sx that flared when I herxed, and the sx that got better after I'd finished my tx on that med. Did you see this type of correlation with Levaquin aches? In other words, is it fair to say that the muscles, joints and tendons that ache while on Levaquin, are the very places that are getting better?
And the same question for depression/irritability?
Many, many thanks! D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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I was prescribed this when I was being treated with abx by LLMD's a couple of years ago.
I never did figure out whether my deep tendon pain (mine came in the hip, and stayed there, to where I needed a cane for a while .. and went away when I stopped the drug) ..I never figured out whether it was the treatment reaching embedded infection, or the "adverse reaction" that is said to be had on the quinilones by some.
I grilled my Docs and a few other patients pretty good to try and figure it out.. but it remains a mystery.
One interesting thing happened tho -
My qualitative PCR for Mycoplasma (which Levaquin is theorized to treat by a few LLMD's, but not formally studied to) -- first appeared positive when I began treatment with Levaquin, and went waaaaaaaaaaay up after three weeks treatment, instead of down.. which means there was allot of DNA found in the blood -
could it be blown up fragments or live DNA had saturated the blood after the Levaquin got in there and drove it out??
it's anybody's guess ..
but my best guess, in my own case, was that it was a reaction to infection being treated in my tendons and joints. I even wonder if the tendon blow out cases may be related to inflammation from infection treatment reactions to Levaquin, rather than a simple 'querk' of the medicine itself.
The Docs I questioned could not give me a definite answer on that either way, and I got the impression that they wondered themselves.
If your pain is migrating, I would suspect this is the infection/inflamation thing - that's just M.O. -- I would watch it closely and be very careful not to do anything strenuous whatsoever.
I remember I needed some heavy pain drug then, I think it was Indomethacin - but that's a NAISAD -- sorry I can't help in the pain med area.. I'm all natural now.
I am no longer on TBD treatment, my son is.
This is what I have on hand for myself for pain should I ever need it:
Harpagophytum Procumbens (Devil's Claw): This herb is indigenous to the Kalahari Desert and is exclusive to Africa. Because of its powerful anti-inflammatory properties, Devil's Claw is used world-wide for osteo-arthritis, fibrositis, rheumatism, small joint disease and lower backache. Scientific analysis shows that the most important active ingredients in Devil's Claw include monoterpine, harpagoside, glycoside, beta-sitosterol, procumbine and stigmasterol. Warning: Because of its strong anti-inflammatory properties, not recommended for people with stomach ulcers or those with any heart conditions, unless supervised by a medical practitioner.
(high quality Sarsparilla also has worked for me in the past for joint pain, for many reasons that helped with Lyme)
Boswellia serata: Extracts of the gum of this tree found in India have been used for thousands of years to relieve pain and inflammation. Scientific studies have demonstrated that boswellia has the ability to inhibit pro-inflammatory mediators in the body and to reduce pain and inflammation without irritating or ulcerating the stomach lining. Boswellia has also been shown to be beneficial in the treatment of ulcerative colitis.
Glucosamine sulphate: Glucosamine has been approved for the treatment of arthritis and other joint and muscular conditions in more than 70 countries throughout the world. Studies have demonstrated its ability to decrease pain and inflammation, increase range of motion and to help repair aging and damaged joints in the hands, knees, hips and spine. Recent studies have suggested that glucosamine may be even more effective than the non steroidal anti-inflammatory drugs (NSAIDS) such as aspirin and ibuprofen, without the harmful side-effects associated with these drugs. It is well known that while the NSAIDS may mask the pain of arthritis and other joint conditions, they can also impair the body's ability to produce cartilage, thereby worsening the condition in the long run and increasing dependence on anti-inflammatories. In contrast, glucosamine relieves pain and inflammation, while also building and repairing cartilage and connective tissue thereby going far beyond pain relief.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Everyone in our support group who has used a quino;one. whether Levaquin or Cipro, has had greatly increased pain.
I had to increase my dose of oxycontin while taking Cipro. It did work. If you aren't currently on pain meds, I would talk to your doctor about what you should try. I can't take NSAIDS either, which leaves out things like Vicodin, but you can still get lower dose opiods without NSAIDS in the formula.
My doctor also had me try Cymbalta, which works for some, but it was no help to me. If you've never tried it, even Elavil helps with pain for many people.
As to whether the pain is a herx, and that those areas are the ones that get better, I have to say I rather doubt it. The increase in pain is so consistent, I really think it is an effect of the drug, itself. My pain did recede slowly after stopping the Cipro, but my pain while on it was so global, I would expect to be completely cured by now!
Cipro did give me some good improvements in my thinking and in my vision, so it was worth it.
posted
What exactly is the mechanism in quinolones which would cause the pain? .. if it is not infection related pain..
That's what I was confused about. It seems to be one of those statements without reasons, where deep tissue penetration by these abx's makes some sence.
..those parts that hurt may be responding to the penetration of quinolones.
I wonder because of spirochetal infections such as Leptospirosis -- "bone breaking disease" with this kind of deep pain that goes with it.
I'm in no way saying that means folks should assume this pain is good necessarily - I was always just interested in knowing the true cause, indicating that these infections are deep in the bone and tendons - perhaps Levaquin treatment requires bed rest in some .. or at least extreme caution in not stressing those areas that are painful while on it, because no matter what the true cause, tendons have been blown on the drug.
I just don't understand how an "effect of the drug" substance itself could manifest it self in so many varying ways - migrating pain, ect..
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Mo, if a quinolone is a toxic substance, it could very easily cause pain without having any relaitionship to the infection. Quite simple.
Roving pain is often associated with toxins in the body, as the chemistry that toxins produce can move more quickly and freely than infectious agents can. Even the pain from borrelia is conjectured to be caused sometimes by the chemistry it produces, rather than the actual spirochete.
Also, I would expect to see more muscle related improvements from the pain, if it was caused by herxing. I didn't see that, in myself, and I don't see it in most of the other people who are reporting on it. I'm not saying I don't see improvements, just that they don't seem to be related to the pain.
Also, the pain we are seeing seems to be primarily muscle pain, NOT tendon or bone pain. If someone has tendon pain, the docs take them OFF, ASAP. This overall, genralized muscle pain is something else. It builds up over time on the drug, kinda like the frog in boiling water.
I know that Dr. B proposes this reaction, and the tendon damage, may be due to nutritional deficiencies, in particular B vitamins, and magnesium. Tough, though, as high blood levels of magnesium prevents Cipro, at least, from working effectively. So, a catch-22.
posted
Interesting insights, River. I find it all too confusing, as I was told by my Docs that generalized muscle pain was more "herxy" - and deep tendon pain was the "adverse reaction" to the drug.
The patients I have known who were on the drug had many varying types of pain.. some had improvements in many symptoms unrelated to the pain they felt in specific joints while on it. One friend had a joint in her finger hurt badly while on it, and some knee pain while sitting down.
Others have had severe neuro symptoms, dizziness and insomnia - and no body pain.
Others still experienced the first real turn around after taking it - with strange pains as well.
I would think that it could cause pain if it has gotten to infection pockets, but not necessarily improvement in the areas of pain, if for instance it only served to stir things up - to have a herx effect without bringing improvement in certain areas... most people are not on this drug long term.
Or, it could just be a toxic substance that can have some good effects in some cases.
The thing is, universally, patient feedback on the drug and their experiences with it vary greatly -- from the best thing they ever took, to an absolute nightmare. The specific pains vary greatly as well.
My pain was in my left hip tendon, along with moderate generalized muscle aches - and early on I had sharp pain along my calf muscles that came with the drug and resolved within a week while still taking the drug for 21 days.
The hip pain was not a previous symptom for me at all, and I only felt pain there while on this drug - so I definately cannot say it helped my hip.. I never had a hip problem and still don't -
The thing that stuck with me, as far as questioning what exactly this drug is doing as it causes adverse reactions - is that I had the PCR of Mycoplasma appear on it, and increase greatly in the qualitative readings (in the blood) by the end of my course.
Then there are many reported cases by folks not being treated for Lyme, who have taken a short course of the drug and claim they since have experienced chronic disabling neuro and pain symptoms.
Were they poisoned by the drug, or systemic infection run a-muck induced by taking a drug that goes straight for tissue, releasing latent infection? (Myco or other) I do know of other Lyme patients who had PCR detections of Myco and Bart appear while or after taking Levaquin.
It's a potent abx, that's for sure. It helps some and can harm others. You definately need to be careful on this one.
I still feel uncertain as to the exact mechanisms involved in the pains.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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liz28
Unregistered
posted
I couldn't tolerate levaquin after a month. It was impossible to even get out of bed, because every square inch was too sore to move. Had to switch to rifampin.
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posted
Wow, this post is sure timely.....I've just finished a course of my levaquin, septra ds, and flagyl tx.
I haven't felt this bad in a year, honestly. I just finished a round of babs tx and felt pretty darn good.
Now I feel like I'm on a downward spiral......
I did/do have joint pain as one of my major symptoms but it was managable. HLA-DR4 positive.
Now every joint in my body hurts, hurting where it has never hurt before. Also severe body aches, ouch like I got run over by a car (which did happen to me a long time ago, so I do know what that feels like). And the fatigue is back, big time.
The only thing that improved slightly is the lump in my elbow had gone down. I was told this is attributed to lymphedema from infected lymph nodes.
I've been off the meds for a few days but no change so far. Hopefully soon???
So keep posting your experiences everyone please.
Thanks, Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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posted
Wow, thanks for all the great responses. I'm monitoring myself closely with labs and my own awareness. I'm also on plenty of magnesium, B vitamins and so forth.
Can't take Elavil or SSRIs due to restless legs.
Mo, what kind of dosages of Boswellia do you use or have you heard of? I assume you're talking about the essential oil; is that right?
My acupuncturist recommended that I do the warm-up tai chi exercises very gently. One day, I did this when my knee was aching and lo and behold the pain was gone when I finished. We'll see if it is a consistent result.
I'll be checking back to hear more of what all you wise folks have to say.
D
[ 07. August 2006, 12:37 AM: Message edited by: DeniseS ]
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
Timely post. Almost immediately -- within 12 hours of starting Septra DS 2 I started with joint pains in shoulder and hip.
The pains actually started an hour before I began the Levaquin 750mg. I'm on a cycle of Septra DS 2 twice a day plus Levaquin 750mg/day for 3 weeks, adding Tinidazole 500 mg twice/day in the 3rd week only.
Yeah, this combo hurts the joints and flares some paresthesias in my leg.
Does anyone know if Septra is supposed to get Bartonella?
Posts: 211 | From NC | Registered: Dec 2005
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Mathias
Frequent Contributor (1K+ posts)
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posted
What is wrong with Advil, Aleve or Tylenol? I take Advil all the time, doesn't matter if I'm on a quinlone or not.
No interactions were found for the drugs you selected.
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(Note: Not all drug interactions are known or reported in the literature, and new drug interactions are continually being reported. This information is provided only for your education and for you to discuss with your personal healthcare provider.)
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I snapped one tendon before lyme treatment or diagnosis it was in my calf muscle popped while crossing a road on mtn washington nh wife heard it from other side of road she what was that? sounded like a 22 pistol going off.It hurt ached turned totally black&blue before reaching bottom mtn washington.
After being diagnosed and treated with various abx's my journey finally led me to levaquin and it worked pretty well and fast ached, herxed too. About the second month I noticed the back of my legs would hurt after going up or down stairs.
Then big muscle groups started hurting continually biceps front of thighs etc. Then one day I lifted something kinda heavy and in my inner thigh from back of left knee to my butt hurt and all of a sudden a familiar tearing pop and I felt tendon snapp behind l knee and it began rolling and tearing its way up retracting itself until I had a softball size lunp at the bottom of my right butt cheek.
Oh man I got sick in the stomach and had to sit I couldnt sit there was a huge lump under my butt, coiled up tendon and muscle that tore free on its way from retracting journey to my butt.
I immeadiatly called LLMD he said stop taking it continue on other abx.Okay then I had hydrocodone at least it let me sleep. {{{A and know I didnt get it reattached}}} anyway I was off it now and after a few months I was recovering pretty good still very sore Then wham!!!
I tore another one this time in right leg back of knee to GROIN and it rolled up too! Now Iam really in a pickle iam limping from both injuries.
Anyway Ill tell you this I hurt pretty good, sore for months then I was sore well over a year and to this day 4 yrs later I still get soreness in all these places {{on and off}} deep muscle pain when I exercize to much or run up stairs.
The levaquin lingered on a long time.
So I still may try another quinilone Butt!!! at first sign of that sorta pain hard to discibe its deep tissue stiffness soreness big muscle groups.
I would stop it immeadiatley. When you get on this drug youll understand if you get what I descibed as deep muscle pain,ya just have to try it to recognize it the desciption of this pain.
Similar to {{{if you ever played sports}}} what your muscles feel like when you have really have over done it.
Ps if this happens I took asprin for weeks to eleviate blood clotting my theory its up to you. Check with DR LLMD always
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
gee treepatrol, i'm so sorry to hear you went through all that. ouch!
for now levaquin is mainly making me depressed. i found out from an LLMD psychiatrist that levaquin lowers levels or function of GABA thus aggravating lyme rage, irritability, restless legs, sleep.
i'm been hobbling (figuratively, thank goodness) along pumping myself with glycine (LLMD/P sez it crosses BBB and is a precursor to GABA) as much as I can tolerate without getting too sleepy to take care of my three year old. as it is i have to have help every afternoon when the pm slump hits. i feel like my body's made of lead in the afternoons these days.
levaquin is a tough drug!
i have an llmd apptmt in a couple hours and will get the recs from the LLMD/P (doc had to go thru my llmd cuz i got a phone consult so doc can't rx directly). i hope some relief is coming soon. our family unit is taxed to the max!
D
PS An LLMD/P is invaluable - wish i'd asked for and consulted one sooner. these docs know the psychiatric side effects of ld and of ld meds. they can help with meds to help us get thru the tx. IMHO regular MD/Ps just aren't as helpful with ld.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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like I got run over by a car (which did happen to me a long time ago, so I do know what that feels like). And the fatigue is back, big time. ![[Roll Eyes]](rolleyes.gif)
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