posted
Cave, if you're around I am anticipating a big fat "I told you so" LOLOL....
But...so....OK. I know about the possible exploding tendons and whatnot, as well as Levaquin just being intolerable for lots of people.
Here's my sitch: I sailed through month 1 on the Levaquin, felt better than I had in ages. Now we are into week one of month two and I suddenly feel like a body would feel if they had been bouncing around in an industrial-sized laundromat dryer for several hours, or perhaps even days.
My whoel body hurts, yes, including the bottoms of my feet. When I (attempt to) walk it looks like a constipated septugenarian duck on hot coals (the quacking kind...er....you know what I mean) because of the pain on the bottoms of my feet. But I can't quite say it's all my tendons, it's more like that all over Lyme pain - extended herx-type pain.
So it's safe to say that I am in all over agony, crying from the pain, has lasted for three days so far. So is this just a big 'ol herx or is it "holy tendons Batman! Stop the Levaquin!" time?
I am willing to put up with this ridiculous amount of agony temporarily if this is just Bart die-off. And although Im having *some* tendon issues, the pain is more of the disseminated tissue/nerve type that I'm sure everyone is familiar with.
Any input would be much appreciated. Am off to waddle back to the couch now. Also please forgive me if this post doesn't make sense, I seem to be also having great difficulty thining clearly. Thining, thinking, tomato, tomahto.....
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Sorry you are having these issues. I am about to finish month 1 on levaquin and then willstart month 2. Have you mentioned these symptoms to your dr?
Just curious what you symptoms were and what the treatment has done for you? Also, are yout taking a proton pump inhibitor with the levaquin?
Good luck!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
This is going to be a very different point of view, and I have no idea if it will be something relevant to you.
I was taking Rifampin and Bactrim for a Staph infection. While on these, I began having classic Bartonella symptoms, and tested positive for Bartonella. One of my worst symptoms was the terrible pain in my feet. In the beginning, I couldn't sleep at night.
Now, this was without any quinolones. Just herxing. I was on the Rifampin for 4 1/2 months, and the pain improved, but was still pretty bad.
The reason I was treating the Staph was part of Dr. S's biotoxin protocol, and I still had very high MMP-9, which is an inflammatory enzyme, one of the things you watch for on this protocol. So my doctor decided to give me Actos, which will lower MMP-9, as well as Leptin.
Within a half hour of taking the Actos, my toes started tingling! By the end of the day, most of the pain was gone. In a week, the pain was completely gone! Prior to this, my doc was talking about giving me a topical pain cream they use with diabetics, the pain had been so bad, for so long.
I am still being treated for Bartonella. My titers are down, but the doc has me on my second month of Cipro. Other than a week or two of flu like response, I haven't had any bad problems, and the foot pain has not come back.
So, for me, it seems like the pain was caused by this inflammatory enzyme. MMP-9 has been associated with circulatory problems, and diabetic neuropathy can be caused by poor circulation in the feet. Seems like what was going on with me. I have no idea if anything like that might be happening with you. I know the quinolones can cause tendon problems, but maybe it isn't always what it seems.
quote:Originally posted by AlisonP: Here's my sitch: I sailed through month 1 on the Levaquin, felt better than I had in ages. Now we are into week one of month two and I suddenly feel like a body would feel if they had been bouncing around in an industrial-sized laundromat dryer for several hours, or perhaps even days.
I can completely relate. I'm on month 2, 3 days/week only, and general body aches, especially soles and palms, is getting hard to tolerate. Seizures also.
When the body is having a hard time tolerating a treatment, there's always the option to take it slow until the body gets used to it.
Posts: 159 | From CT, USA | Registered: Jan 2005
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posted
The first few days, I also had great outcomes.
I have been taking this for 3 weeks.
In the last week, I started having the overall beat up feel. Its not unbearable yet but its increasing. I hope its a bart die-off. I have also noticed an increase in headaches which would lead me to believe that it is more related to die-off than to medicine.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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Thank you so much. All of what you wrote really really helps.
Cave - I am concerned about these "side effects" lasting months. That's just not right (And the award for ststing the obvious goes to...lol). As I learn more about Lyme, etc. I am coming to the realization that herxing is not neccessarily a good thing. It puts too much strain on an already taxed body. What sie effects have lasted?
Riversinger (random thought...how many of us Bart people are from California? Is Bart more prevalent here? Hmmmm....): I am completely intrigued by what you wrote.
Do you suppose that regular old staph could be another factor, even a co-co-infection that enables the Bart like the Bart enables Lyme? Fascinating.
Also doubly so, what you wrote about diabetic neuropathy!!!!! I am hugely insulin resistant at the moment, and have been becoming more so as part of the whole Lyme fun. Most of my pain is in my hands and my feet anyways, so to have this exacerbated is excruciating, but I feel what you say makes so much sense. VERY interesting - thank you so much for sharing!
Hi David - I have not mentioned these sxs to my doctor - I *just* had an appointment with her right before all this started and I didn't feel that it had hit a point as to be so bad as to need bothering her, she is sooo busy.
Also, she told me that if I herx really badly, to go down to half for a bit and then if it's still bad to stop, so I just thought that before I went to her I would see what everyone on the board says and then plan b would be the halving of the dose.
And by the way - random rant...oh my GOSH could this medication BE more expensive (LOL I hear a voice in my head saying, "yeah, it's called "Mepron")?!?!? Sheesh!
OK, no, I am not taking a proton pump inhibitor. My symptoms are hard to distinguish from Lyme sxs. I have had painful hands and feet throughout, but the pain on the bottoms of my feet has just really ramped up with month 2 of levaquin tx.
Other than that, it's the all-over body aches, way increased floaters (oh my gosh I was trying to drive and it was like all these little bugs swimming across my vision - ack!), um....what else...very stiff joints (could be the tendon thing), increased bouts of lyme rage and uncontrollable crying jags. Oh yes, and worse dyuslexia and inability to type.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Yes, Alison, there does seem to be an awful lot of Bartonella in California!
The Staph that I am treating is not regular old staph, but a multiply antibiotic resistant staph that in fact has been found to be a co-factor in some of these illnesses. It produces nasty cytokines and also splits the molecules of MSH, a not very well known master hormone in the body, produced by the hypothalmus, that is critical for immune function, pain control, sleep, gut function, and just about anything else you can name that our illnesses mess up.
This staph (MARCoNS for short) is found colonizing the sinus cavities.
You might want to look into Mold Warriors, which describes all the info on the Staph, Actos, etc. I didn't mention that I had the neuropathy in my hands as well, which also went away while on the Actos.
The book is called Mold Warriors, but it also looks at the impacts Lyme and other biotoxin illnesses have on the immune system, and how to counter it. This treatment has caused a HUGE turnaround in my health, from the downward spiral I was in last year. It isn't the complete answer, but it filled in some big holes.
I would not allow my teenager to go on Levaquin et al because of joint issues i had researched, including people blowing out their achilles tendons! I had heard of terrible side effects in elderly in hospital too. Lev is a "hot drug" that surgeons love to prescribe before surgery as a prophylactic. A friend MD who works for a prominent med center on a transplant team said she will Never prescribe the drug because it does terrible things to joints, permanent damage. She has seen it in her young patients when a surgeon prescribed it without her knowledge.
the increased joint/tendon pain IS NOT A HERX!!!!
I thought, if the patient already has "joint pain and other joint issues, how can you put them on a drug that might do more damage --and how will u know if they are improving or not?
for me, not worth the risk. of course, everyone must make their own decisions. i am not a dr or pharm.
all best wishes...
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
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I would not allow my teenager to go on Levaquin et al because of joint issues i had researched, including people blowing out their achilles tendons! I had heard of terrible side effects in elderly in hospital too. Lev is a "hot drug" that surgeons love to prescribe before surgery as a prophylactic. A friend MD who works for a prominent med center on a transplant team said she will Never prescribe the drug because it does terrible things to joints, permanent damage. She has seen it in her young patients when a surgeon prescribed it without her knowledge.
the increased joint/tendon pain IS NOT A HERX!!!!
I thought, if the patient already has "joint pain and other joint issues, how can you put them on a drug that might do more damage --and how will u know if they are improving or not?
for me, not worth the risk. of course, everyone must make their own decisions. i am not a dr or pharm.
all best wishes...
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
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I can't thank you enough. Yet another thing that you mention fascinates me as part of the research/experimentation puzzle I am currently working on, and that is: hormones. All of them. LOL. But especially Leptin (another master hormone) and others and now MSH. I just have this suspicion that seems to be that by fixing *hormonal* issues in the body, this can greatly help with Lyme, and this includes neurotransmitters.
Thanks also for more info on the crazy staph and the mold warriors which I keep on meaning to look into and now will definitely do.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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riversinger
Frequent Contributor (1K+ posts)
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posted
Cave, you right! I'm gonna laugh, but I might cheer, too! Because maybe, it might help. I hope it does.
I took it at 45mg for a week, then 30 mg for another week. Longer than Ritchie says. But I know people who do it for much longer, as long as they are doing a low amylose diet, and they have high leptin.
I don't have very high leptin, which is why I didn't do it before. But I know yours runs high, so you might be OK to stay on it for a while.
I'll tell you, I was so amazed at how much it helped me, I wouldn't hesitate to do it again if my labs indicated a need. This protocol has really been a life saver for me. I'm really hoping to get the SF Dr. S more convinced, because I think it would help some of his patients.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I was on Levaquin for months. I had severe muscle pain, especially pain in my feet. The type of pain I had happened to be symptoms of Bartonella as well. I stopped not because of the pain, but just to cycle onto another abx.
People first started telling me I looked healthy after the Levaquin. I think it made a huge difference.
Recently, this pain has come back. My LLMD thinks I have bartonella, and that we stopped the Levaquin too soon.
As far as Levaquin and tendon damage. My understanding is that tendon damage on quinolines can come with no warning. You feel fine, move in a certain way, and pop. That suggests you may be having a herx, not tendon damage.
Also, my LLMD explained tendon issues with Levaquin as existing because the Levaquin gets deeper into soft tissue than other abx. It's killing the keets hidden in your muscles and tendons that other abx doesn't reach. Interesting idea I think.
I'm not certain. But I'm planning on going onto Levaquin again as soon as I have gastro issues under control.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I started Levaquin on 3/7/2006. After about 3 days I had a HUGE increase in leg pain and hip joint pain and rib cage pain. It lasted about 4 days then let up to pre-Levaquin levels. Does that mean it was herx? Leg, hip joint and rib cage pain have been a big part of of my whole Lyme experience.
-------------------- Pam Live well. Laugh often. Love much. Posts: 53 | From Ohio - south/southeast | Registered: Oct 2005
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posted
Well, as of yesterday I completely stopped the Levaquin and have an e-mail into my LL.
The reason was not the pain, but my heart started doing very strange things. For several hours the first night and sporadically all day and night the next day it would sort of stop and do a sort of spasm-y thing where it felt like it was fighting to beat. I was like "nuh-uh, no way" and immediately stopped the Levaquin.
Today thank goodness the heart palpitations/flip flops struggling is no more. Which is good because it is one of the freakiest feelings I have ever felt in my body.
So there you have it....it came on so fast, and that can't be good.
Also, jons, thanks for that website link on the dangers...I was able to go on there and see that heart issues are huge with this particualr med so I didn't feel in the least bad about stopping it.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Sounds smart, Alison. Heart symptoms are nothing to mess around with. I'm glad that it has calmed down now that you have stopped the Levaquin.
If you need to treat Bartonella, there are other drugs to try. Its not worth causing new problems to try and get rid of one you already have.
wooconley, that does sound like it might have been a herx, since it came and went so quickly. I hope you find the Levaquin does you some good.
posted
An update. . . by Friday night to my surprise, I started to notice relief from the beatup feeling. By this morning I felt good.
I spoke with my llmd this am and she said it was bart die-off.
Overall I have noticed great improvement.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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kelmo
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Member # 8797
posted
My daughter's main issue is Bartonella, so I'm reading your posts with interest. She was put on Zythromax. She started with one 250mg every other day and has worked up to the therapeutic dose of 500mg daily.
After two weeks on that dose, we are seeing brighter days. We live in AZ, so Lyme is hardly EVER diagnosed here. Hence, it was difficult to find a doctor...there are only three in the state, from what I hear, who do antiobiotic treatment.
My daughter also has the pain in her hands. She will sit with gloves on and a hot bean bag. Sometimes her fingers don't function. Do you all have that, too?
The first improvement for her was her eyes. She had conjunctivitis and extremely dry eyes. She still has dry mouth.
I'd like to hear from you all how long you have been sick and how long on treatment. Also, what are your top 5-10 worst symptoms.
posted
I believe my lyme is congenital, but my acute symptoms began a couple of years ago.
Most of my pain is in my hands and my feet. Well, most of my acute, throbbing, aching stabbing - type pain. Sometimes I have to sit on my hands or run them under cold water or start massaging them because the pain is just crazy-making.
Since the Levaquin and subsequent herxing, the pain on the soles of my feet (classic bart) has increased to the point where I can hardly walk or so so on the balls of me feet. I also noticed a nice surprise in the bath the other day - I have just developed that classic bart-looking streaky stretch mark purple rash on my hips.
Ironic that the herx causes the symptoms to flare. I am back on Doxy 2oo mg BID, which is sooo boring lol and such a pain but I feel loads better. My LL person did say that extreme heart flip flopping is a total herx so I do feel better about that but the tendon issues keep me from taking Levaquin.
Other bart symptoms....my new pet theory: Did eveyone hear about , oh what the heck is it called, Tamiflex or the fluroquinolone that starts with T where there is the huge lawsuit because it is wreaking havoc with their insulin and basically causing massive diabetes in people?
Well, I mention this because whilst on the Levaquin I notice that it was virtually IMPOSSIBLE to mainatin my leptin diet, which is all about controlling and healing insulin resistance among other things. I mean just impossible.
Now that I am getting the Levaquin out of my system, I am noticing that I am able to be back on the Leptin diet much better, which makes me feel *so* much better because my diet helps my sxs even more than supplements do.
OK...speaking of sxs you wanted top 5-10. I don't know how to differentiate Bart from Lyme, but here gows FWIW:
1. Extreme pain in hands and feet (including soles) as well as pain in limbs, base of head, neck, shoulders and back along spine and hips, esp around rotator cuffs. 2. Cognitive issues, dyslexia, brain fog, head full of cotton feeling 3. Extreme fatigue but seems to be related to muscles rather than brain. 4. Massive increase in floaters. Oh my gosh it's like a circus in my vision! I'm trying to drive and it's like dee dee deedle de de deedle deedle....they all come dancing out. 5. Also blurry vision as an addendum to that
I've tried to list the sxs that came out as part of the herx from the levaquin more, so hopefully these are my bart symptoms.
Cheers, Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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lymewreck36
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Member # 4395
posted
Hello. My husband is currently on levaquin for his lyme. WE are holding our breath. I was on Levaquin for three weeks, and then cipro for three weeks, for lyme disease. To make a very long and dramatic story short, it took over two years for me to recover from the damage that those fluroquinolones did to me. I thought at first it was a huge herx, and then I realized that it was different from a herx. The damage was complete. All tendons in the body, nervous system damage, increased panic, sleep disorder, black depression......
I finally got online and typed in the search line the following: "Levaquin and adverse reaction." Wow, it will all pop up. Look thoroughly through all of this information and review carefully what you are experiencing. Please be very careful with this medication. It is the right answer for some people, and a disaster for others.
Best of luck. Mary in Alabama
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