Anyone had pain in joints/neck caused from Levaquin?

Hello everyone! I'm new to this site and to Lyme.

I've been doing so well on Levaquin for 30 days. Infact, I've been feeling great! Last week, I began having pain in joints and neck. I know Levaquin can cause this, but so can Lyme. I'm not sure if I should stop taking the Levaquin now, wait and call my doctor on Monday, or try something else first?

My doctor is not a Lyme doctor. He has no knowledge of Lyme, doesn't care to learn about it and doesn't believe I have Lyme, but is helping me, anyway.....long story. Going to an LLMD is not an option for me at this time.

I began taking Macrobid for this disease, 2 months ago.

I'm taking 100MG of Macrobid, 500MG of Levaquin & 250MG of Flagyl. I just started taking Flagyl 2 days ago. I'm sure the MG's are low, but my doctor knows I'm very sensitive to meds. Also, might be that's the amount of MG's my insurance will pay for. I'm taking all 3 meds, once a day.

The Macrobid is awesome. It keeps the lumps out of my legs, gets rid of the nightly leg cramps, no more limp in my left leg...and can't get by without it.

The Levaquin seems to work on the neuro part. I've had so much energy, the past week. I'm thinking more clearly and memory has improved...along with mending a few other areas. I feel great. Took me almost 1 month, on this medication, to get to this "feeling great" part again.

Have no idea what the Flagyl is doing for me yet. I'm too new to Flagyl yet. I do have a bit of stomach cramping, but it's not too bad and I can live with it.

Thanks, in advance for any advice you can give me.
JaeElle

[JackieCalifornia]

Generally speaking, I would not stop taking any meds without a doc's approval unless things were going very very badly WITH the meds.

Starting and stopping runs the risk of the bacteria developing resistance to the medicine.  If taking a full course of treatment kills 99%+ of the bacteria, then stopping after a few days of treatment could mean you have killed only a fraction of the bacteria, and the remaining ones that were strong enough to survive a few days of treatment are now the survivors and are continuing to multiply.

That is how drug-resistant strains of bacteria come about, and it is very bad (and sometimes deadly) for the community at large as well as for you.

I would ALWAYS consult a doc before stopping medicine or 'taking a break' from it -- the idea I have heard some say about not wanting 'to get dependent' on antibiotics is simply wrong and even dangerous.

If your symptoms are bad enough that you want to stop taking the meds, then call the doc's office.  That's what the night call service is for, to reach the doc and pass along your question.

[JackieCalifornia]

Generally speaking, I would not stop taking any meds without a doc's approval unless things were going very very badly WITH the meds.

Starting and stopping runs the risk of the bacteria developing resistance to the medicine.  If taking a full course of treatment kills 99%+ of the bacteria, then stopping after a few days of treatment could mean you have killed only a fraction of the bacteria, and the remaining ones that were strong enough to survive a few days of treatment are now the survivors and are continuing to multiply.

That is how drug-resistant strains of bacteria come about, and it is very bad (and sometimes deadly) for the community at large as well as for you.

I would ALWAYS consult a doc before stopping medicine or 'taking a break' from it -- the idea I have heard some say about not wanting 'to get dependent' on antibiotics is simply wrong and even dangerous.

If your symptoms are bad enough that you want to stop taking the meds, then call the doc's office.  That's what the night call service is for, to reach the doc and pass along your question.

[JaeElle]

Thank you, Jackie. I will continue the medication over the week-end. I'm hoping the Flagyl will lessen the discomfort by Monday.

[mojogal]

I had to sto my levaquin after 6 weeks because of the same pains plus tendinitis. My LLMD mentioned it might happen so I stopped it and called her and now I am taking other things for my Bart's. Do you think you have bartonella? Levaquin is given for that. Now I found out I also have babesia which is another two meds. If you think you have regular Lyme it's something else but the common thinking now is actually if you have Lyme you have one or two co-infections. Do you mind telling us your symptoms? If you can't see an LLMD but your doctor will give you the correct meds, we may ba able to help even though we are not medically trained.

[Ricobord]

I am not familiar with Macrobid. I haven't seen it mentioned much in Lyme treatment, but that is great if it's working for you.  I am very curious how you came to have a doctor who doesn't know anything about Lyme, doesn't believe you have it, but is willing to treat you.  That is unusual, but lucky for you!

I took Levaquin for about 6 weeks also, and it worked great for me, too.  I had anxiety from the Bartonella, and the Levaquin did a great job with it.  I stopped because I started feeling a nightly vibration in my left achilles tendon, and then I got a sharp cramping pain in it. My appointment was the next day and so my doc switched me to Biaxin + Plaquenil, which treats both Bart and Lyme, especially when they go intracellular.

I don't know if Levaquin can cause neck or joint pain. It is known for causing tendon pain or even rupture.  Herxing from the flagyl could certainly cause neck and joint pain.  Flagyl is a cyst-buster, and it breaks up the cysts and biofilms Lyme creates to protect itself from the immune system and the antibiotics. You have to take it along with a Lyme-killing antibiotic to kill the spirochetes as they come out of their cysts.

Be sure to continue treatment until you are symptom free for 8 weeks.

[mojogal]

My pain is in my neck and shoulders and my chiropractor says its tendinitis.
I wouldn't even take it if I knew all this pain could come from it.
My arms and wrists and lower back hurt too. Never did before levaquin.

[Ricobord]

Very good to know!  Thank you for the clarification.  I was assuming that neck pain meant the creaks and stiff neck that Lyme can cause, which is different than tendon pain. Does your LLMD know about your Levaquin pain?  Mine took me off it when I got achilles heel pain. I guess it is a balancing act...treating a disease that needs to be treated vs, suffering the side effects.  This will be my topic of conversation at my next appointment re: kidneys vs resuming treatment. Sigh.

[mojogal]

Yes my LLMD switched me to minocycline based on my friend who sees Schaller, lol. She is doing well with Bart's and Babs and he never uses levaquin because of the tendinitis. She even said he is strange but she is use to him after all these years.
I sure hope your kidney improves. It is a balancing act. Double sigh:(

[JaeElle]

Don't know why I didn't get alerts to my e-mail for comments received here. I'll answer all comments when I get home from work tonight. Sorry for the time lapse.

[mojogal]

Dont worry about it , we all check in at different times.

[JaeElle]

Thank you, Mojo. I'll be back.

[JaeElle]

I have taken Levaquin a few times and never had a problem with it. Even took it for 30 days when I had pneumonia the first time, over 10 years ago. Last night, I took 1/2 of an Aleeve tablet, at bedtime. Pain was gone within 20 min. So, I'm now thinking the pain and stiffness in neck & shoulders was Lyme.

I've had so many aches, pains & stiffness for over 18 years. Even though so many at my age, got around so much better than me, I thought I was just growing old at a faster rate.....and accepted it.

Before I began taking these antibiotics, I was taking either Aleeve or Aleeve Sinus & Cold for the pain. For some reason, the Aleeve S & C seem to work so much better for the pain and stiffness. I'm still taking these, periodically for the pain and stiffness....when needed.

I've had many bladder infections, through the years. Not one antibiotic would completely kill the bacteria. Also, the toothaches were terrible! I wear dentures. My gums still hurt, from time to time...not related to dentures. The electrical, sharp pains in my ears, head and legs would almost drop me to the floor.

Last year, my doctor gave me Macrobid for the first time. All the aches, pains & stiffness left right away....including the nightly leg cramps. I could think clearly again. Confusion left. I could talk correctly and understand what people were saying to me. I didn't need to ask them to talk slower, so I could understand what they were saying. Even the bright circles of light went away, that I would get periodically. I used to get the shakes and would quickly eat something to get rid of them. The shakes made me ill, if I didn't eat soon enough. These are only a few of the symptoms I have. I have so many more.

Unfortunately, I was only given 15 days on this medicine. Of course, the symptoms came back again. I also began the sweats during that time. Felt like I was going to pass out. Never had them before. Triple digit temps have never bothered me, until last year. Triple digits feels like 80-90 deg temps to me and always has. I love the summer months. I've never perspired until last year. Winter months are way too cold for me. I can't handle the cold of winter. I just can't get warm.

I began getting lumps in my legs. They hurt terribly. When I told my doctor how great I felt on Macrobid, he put me back on it for a few months. Macrobid got rid of the lumps and the pain they caused. Also, Macrobid is in the same family as one that is given for Lyme.

During the time I began taking Macorbid, the second time, I started the brain fog. It lasted about 6 weeks....a terrible time for me.

The sweats continued, though. I've done a lot of research online. I read where Levaquin helps with the sweats and neuro problems. I asked my doctor if I could try it. It did get rid of the night sweats and I was able to think even more clearly. The ringing in my ears isn't near as loud, but still too loud. I've been improving daily, a little at a time, since I went on Levaquin.

Flagyl seems to be completely getting rid of the sweats, slowly. However, I seem to be having a problem with Flagyl now. I'm only taking 250MG's, 1 pill daily and the leg cramps came back tonight.. Had a very difficult time at work tonight because of it. Nerves, in legs, almost dropped me to the floor. Legs just quit working and got weak. However, Flagyl is helping me get some great sleep....along with improving other symptoms so, I would like to keep trying it.

I bought a probiotic tonight. Hoping that will solve the problems I'm having with Flagyl.

I cannot take penicillin, tetricycline, nor any meds in those families. I truly have a difficult time with medicines, whether it be antibiotics or over-the-counter.

Well, I'm sure I've left a lot out, beside this being a reply that is way too long to post, but this should help you to understand more about me. I have no support, in my everyday life. It's wonderful to have met you all here....thank you.

[JaeElle]

Don't know what I'd do without my chiropractor. He helps me so much, through all of this. The adjustments keep the nerve endings open. I can stand up straight after the adjustments, too....besides easing the pain and stiffness of Lyme.

[JaeElle]

Hello, Ricobord

The generic for Macrobid is Nutofurantoin Mono. It's a great antibiotic for many symptoms of Lyme.

I saw something on TV about the Lyme Bullseye Rash, a few months ago. My rash was still showing, but almost gone. I went to my doctor right away and took a picture, of the same rash with me, that I found online. My doctor didn't care to see my rash, but did look at the picture. He sent me for a lab test right away. Because I had done a lot of research, I could see he didn't ask for the correct test....which came back negative. He wouldn't send me for another test. Said...and still says I don't have Lyme. So, I changed my strategy, and hoped he'd help me with symptoms, instead....which he's doing now. I can't mention the word "Lyme", but I can explain my symptoms...which he's given me meds for, in the past. So far, so good. It's working. I just do the research on meds given for Lyme...and meds that I can take. If I know I can take them, I ask him if I can give them a try. I'm truly so fortunate he's helping me. I can't afford an LLMD, nor lab tests at IGeneX right now.

From what I read on the Levaquin insert, it can also cause joint pain....besides tendon pain. I'm so glad to know it wasn't the Levaquin, causing me the problem. I can't take many meds and I like the way the Levaquin is helping me to improve on a daily basis. I'm beginning to feel so good again...and younger!!!...LOL!

As for the Flagyl....can a bit of dizziness and slight light-headiness be a part of herxing? I had this thought tonight at work. I'm also, going through a bit of this with Flagyl

Thanks so much for your informative reply

[mojogal]

Are you on or thought about going on social security disability? I am on it and they give you Medicare which pays for IgenX lab work.
I have all of the symptoms you mentioned plus more and I have two co-infections, Bart's and babs and it sounds like you could have them too. The sweats are common in babs, and you have to take an anti malaria med.  I haven't heard about Macrobid working but if it does, great. You need to stay on meds 8 weeks after you feel better. I have a nurse friend who has Lyme and  works for a well known LLMD and she told me at least 2 years of treatment, since these bugs hide, making you think you are better only to come back and make it harder to kill.

[JackieCalifornia]

I just noticed that you are in central California.  If you can get to the Bay Area, there are some well known LLMDs there you might consider if you want to change docs, or just get a second opinion.

[JaeElle]

Yikes!!! More meds needed!!...LOL!  I can now see the importance if trying to get to an LLMD....ASAP. Can't afford an LLMD right now. Looks like I've got a lot more thinking to do.

Don't think my doctor would consider putting me on Social Security Disability. Also, would probably get turned down by them. I'm able to work and function OK. They'd see that....unless I go off all meds. Too much pain to even consider it.

Even though Medicare pays for the lab, I'd still have to send the money to the lab first. The lab is expensive. Would be a hardship, waiting for the reimbursement. And....what if the tests keep coming back negative? Would need to pay the lab every time they take tests. Some have waited a few years for their positive results. However, I'm still thinking on this one....and have been for a few months.

[JaeElle]

Thanks, Jackie.

Don't think I could drive more than 30 mile radius.  

I do have a list of LLMD's in California. All are so far away from me. So far, haven't found anyone who could drive me to any of them. Still working on this one.

[mojogal]

Just as an FYI, if you have Medicare, you don't pay the lab first they accepted payment in full but if you are able to work, it is a mute point. Believe me, I wish I could work, I miss it.
Let us know how you are.

[Ricobord]

You are very clever! Kudos to you for finding a way to get treatment from an uncooperative doctor. If you want to do the IGeneX testing, consider just ordering the Western Blot.  It is the one most likely to show signs of Lyme.  It costs around $200. I am not familiar with medicare at all...I defer to Mojogal and others who know how it works. This is a much more palatable cost than the full panel.

I am not terribly surprised your doctor doesn't believe you have Lyme. I encountered the same with several CA doctors. I was telling my symptoms to someone as I was deteriorating, and she described all my symptoms to a doctor she knew, the head of a nearby ER.  Then she asked him if he would think of Lyme. His response..."No! There's no Lyme Disease in California."   I looked at her dumbfounded. I told her it simply isn't true. And besides, people travel!  She looked at me as if I had stated the obvious (which I had!), and then agreed with me.

I think if you are feeling a lot better on Levaquin, then you also have Bartonella.  I don't believe Levaquin is effective against Lyme.  Also, if you started having a lot of night sweats after your Lyme treatment started, that is indicative of Babesia.  You may want to ask your doc to authorize tests at IgeneX for these two, also. (Or skip the Bartonella test and just treat it!). If you do habe Babesia, the Lyme treatment has a chance of failing. Babesia somehow interferes with the treatment.  One scientists believes that Babesia lives in the biofilm colonies with Lyme and further protects the Lyme somehow.  The medicine of choice for Babs is Mepron.  It is pricey, so coverage usually requires an actual diagnosis.  But maybe your doctor would be less resistant to this disease.  BTW, I know someone who got all three of these nasty disease from tick bites in a field east of modesto.  All three are definitely in Cental CA.

[JaeElle]

Thanks, Mojo....this is great news! I do have Medicare Plan A. Can't get Plan B until October, because I can't change my insurance until then. This truly gives me something to work towards....assuming I can continue to work, and still get help from Medicare.

I'll be calling my insurance company tomorrow, to see what they offer for senior supplemental insurance. My main concern is that they will continue to pay for the antibiotics that I'm taking now. If not, this will give me time to check out other insurance companies.

I'm on my 3-day week-end now. I'll have plenty of time to check some things out.

[JaeElle]

Thanks for the compliment, Ricobord. It did take me some time to think it all out, but I finally came up with a way to get help from my doctor.

You've given me more great info. My doctor would definitely send the tests to IGeneX. However, he won't know how to read the results. So, I do think I need to get to an LLMD in October to help me get well. One thing I did find out, though....the IGeneX kit is free. They would send it to me. I'd take it to my doctor and he'd take the tests they ask for. Then, he'd send them to IGeneX....along with the money he'd get from me. Not bad, except I can't come up with that much money and he won't know how to read the tests when they come back to him.

Wondering if I misunderstood some of this, after reading what Mojo had to say about Medicare paying for it? Or, maybe there is another way around this, so I can get the tests done sooner....just not sure.

Now, I understand what's going on with me. So much more than I thought it was. I was so hoping I could just take 2 or 3 antibiotics and get well. Doesn't look like that's the case. I need a specialist in this field to help me. In the meantime, I'll continue with what I'm doing now and keep myself as comfortable as possible, until October....assuming that's the correct thing to do.

Modesto is about 2 hours from where I live. I got my tick bite in Madera, between where I live and Modesto. It was a woody area and the people didn't believe in spraying for anything....let nature handle it all. Darn tick bit me all the way home that night. Sure did burn and itch. Bullseye was in full form the next day.