Lymes people:

[Denisemomof4]

Dd12 finally started her meds today. She only took one dose and all her muscles are aching. I don't know if this a Lymes issue or a reaction to the meds.

 

Opinions?

 

I think calling a pharmacist would be a waste of time as I'm sure they aren't Lymes literate.

[Denisemomof4]

I know there are people here with experience so I'm going to bump.

[Catwoman]

I never experienced that with the doxycycline I took, but have you checked the possible side effects of the meds, just in case? I know the antibiotics for Lyme are very strong, so I wouldn't doubt that she could have a weird side effect from them.

 

What is she taking, Denise?

 

 

EDITED TO ADD: I got curious about this and I just checked on the side effects of doxycycline. Muscle pain is listed as a common side effect. I'll bet it's the same with some of the other antibiotics, as well.

Edited October 25, 2012 by Catwoman

[Matryoshka]

Has she had Lyme for a while? Treating can sometimes cause what's called a Herxheimer reaction, where the dying bacteria release toxins which make you feel worse in the short term. It's a sign the antibiotics are working.

[Spryte]

Depending on what she's taking, and the dose, and her body chemistry... She could react fairly quickly. You're familiar with the concept of a Jarrisch-Herxheimer reaction, right? Fondly called herxing...

 

Within a few hours is very quick, but I have reacted that quickly. The worst of it usually comes on day 3, and then at the three week mark.

 

It could be that her dose is high, for her, some people suggest working up to a bactericidal dose. Just do what her LLMD suggests, but keep him/her in the loop re: symptoms and reactions.

 

She could be dehydrated... Oh, actually, that's not unlikely! That can make one's muscles ache. Work on hydration a lot. Also, focus on detox. Epsom salt baths, lemon water, whatever supportive supplements have been suggested by her LLMD.

 

And if you need questions answered ... Do call the LLMD.

 

Big hugs to your DD from one who's lived it...

Edited October 25, 2012 by Spryte

[Denisemomof4]

I never experienced that with the doxycycline I took, but have you checked the possible side effects of the meds, just in case? I know the antibiotics for Lyme are very strong, so I wouldn't doubt that she could have a weird side effect from them.

 

What is she taking, Denise?

 

 

EDITED TO ADD: I got curious about this and I just checked on the side effects of doxycycline. Muscle pain is listed as a common side effect. I'll bet it's the same with some of the other antibiotics, as well.

 

I'm sorry, I could have googled that. I wanted to ask people who have BTDT. Thanks so much though.

 

She is on minocycline (generic doxy I assume) and azithromycin.

 

I am so sorried she is going to start to feel sick. :sad:

[Denisemomof4]

Has she had Lyme for a while? Treating can sometimes cause what's called a Herxheimer reaction, where the dying bacteria release toxins which make you feel worse in the short term. It's a sign the antibiotics are working.

 

Depending on what she's taking, and the dose, and her body chemistry... She could react fairly quickly. You're familiar with the concept of a Jarrisch-Herxheimer reaction, right? Fondly called herxing...

 

Within a few hours is very quick, but I have reacted that quickly. The worst of it usually comes on day 3, and then at the three week mark.

 

It could be that her dose is high, for her, some people suggest working up to a bactericidal dose. Just do what her LLMD suggests, but keep him/her in the loop re: symptoms and reactions.

 

She could be dehydrated... Oh, actually, that's not unlikely! That can make one's muscles ache. Work on hydration a lot. Also, focus on detox. Epsom salt baths, lemon water, whatever supportive supplements have been suggested by her LLMD.

 

And if you need questions answered ... Do call the LLMD.

 

Big hugs to your DD from one who's lived it...

 

I thought this would be awfully quick for herxing but she has a delicate system. I have no idea at all how long she's had Lymes.

 

I am CONSTANTLY after to DRINK DRINK DRINK water and even put chia seeds in it to help keep her hydrated. It is beyond frustrating! i started to do green smoothies but lemon water is also an excellent idea. Thanks!

[Corraleno]

The last time I took zithro it made me feel horrible, like I had the flu -- headaches, body aches, my joints and muscles felt like I'd been hit by a truck. It lasted 3-4 days. I haven't had that reaction to doxy, nor has DS, who is on his 7th month of doxy. :( So my money would be on the zithro.

 

Jackie

[GailV]

Dh is out of town so I can't ask for specifics of what happens with which med, but I know that sometimes he reacts within hours, and he tends to assume it's a herx. Also, the first few days/weeks were really the worst. It was like his body decided to reprise every symptom he ever had.

 

He was taking 2 meds, but had to quit because it was knocking him out too much.

 

More detox ideas -- dry brushing skin. Lymph flush by alternating hot and cold water. Dh goes to a whirlpool for 15-20 minutes, then into a cold swimming pool. (Actually, if I recall correctly, he researched doxy and discovered that it's more effective against malaria when the body temp is higher, so he sat in the whirlpool with an oral thermometer taking his temperature to figure out how long it took to heat his body to mimic a fever -- he heats himself to a certain temp a certain number of hours after he takes the medicine. His theory is that he kills more spirochetes that way.)

[Tap]

I'm sorry, I could have googled that. I wanted to ask people who have BTDT. Thanks so much though.

 

She is on minocycline (generic doxy I assume) and azithromycin.

 

I am so sorried she is going to start to feel sick. :sad:

 

Minocycline and doxycycline are different meds. They are related, but not the same.

[Spryte]

Mino and zith both pack a punch. Poor girl, she's going to herx. Zith always knocked my socks off.

 

Did she start both meds at once? You might consider asking her LLMD about staggering the start dates. Mine always had me start one med, give it a week, then start the next. Just a thought, I wouldn't do it without running it past your own LLMD.

 

All the detox you can think of for her... And stay super hydrated.

[NASDAQ]

I took doxy and I felt awful. I also threw up on the Mall in Washington DC. I felt awful all the way through. Is she taking them with food? That helped a bit.

 

I don't think it's uncommon with high doses of antibiotics. Certainly the doctor wasn't surprised when I mentioned it.

 

OTOH, I've never, ever had a problem with Lyme since the treatment. IYH your daughter is the same way.

[Denisemomof4]

My gosh, I'm really scared now. She has been through SO MUCH! I will do all the detoxing I can for her. I also read bentonite (?) clay helps absorb all thr toxins when herxing.

 

 

The dr never mentioned staggering the meds. She just took her second dose.

 

She can't tolerate heat. She has no body fat at all and suffers severe hot flashes that wake her up at night. She has a fan on her at all times. She really couldn't tolerate high heat treatment. :sad: i do hope this symptom goes away with treatment because nobody has any idea about her body temp regulation and she has now seen 26 doctors. :crying:

[MariannNOVA]

Has she had Lyme for a while? Treating can sometimes cause what's called a Herxheimer reaction, where the dying bacteria release toxins which make you feel worse in the short term. It's a sign the antibiotics are working.

 

Depending on what she's taking, and the dose, and her body chemistry... She could react fairly quickly. You're familiar with the concept of a Jarrisch-Herxheimer reaction, right? Fondly called herxing...

 

Within a few hours is very quick, but I have reacted that quickly. The worst of it usually comes on day 3, and then at the three week mark.

 

It could be that her dose is high, for her, some people suggest working up to a bactericidal dose. Just do what her LLMD suggests, but keep him/her in the loop re: symptoms and reactions.

 

She could be dehydrated... Oh, actually, that's not unlikely! That can make one's muscles ache. Work on hydration a lot. Also, focus on detox. Epsom salt baths, lemon water, whatever supportive supplements have been suggested by her LLMD.

 

And if you need questions answered ... Do call the LLMD.

 

Big hugs to your DD from one who's lived it...

 

My gosh, I'm really scared now. She has been through SO MUCH! I will do all the detoxing I can for her. I also read bentonite (?) clay helps absorb all thr toxins when herxing.

 

 

The dr never mentioned staggering the meds. She just took her second dose.

 

She can't tolerate heat. She has no body fat at all and suffers severe hot flashes that wake her up at night. She has a fan on her at all times. She really couldn't tolerate high heat treatment. :sad: i do hope this symptom goes away with treatment because nobody has any idea about her body temp regulation and she has now seen 26 doctors. :crying:

 

Sounds like she is herxing.....ds and dd both suffered from that. The clay baths for sure will provide relief......drinking water, water, and more water.

 

And the osteopath can help....with dd13 the osteopath helped enormously, and dd32 still sees the osteopath. (((Hugs)))

[Lizzie in Ma]

I'm sorry, I could have googled that. I wanted to ask people who have BTDT. Thanks so much though.

 

She is on minocycline (generic doxy I assume) and azithromycin.

 

I am so sorried she is going to start to feel sick. :sad:

 

Minocycline isn't generic doxy, it is a different antibiotic and it's possible side effects include joint or muscle pain.

Our dd has Lyme too. :grouphug::grouphug:

[Mom0012]

When I started lyme treatments, I got much worse before I got better. I had all kinds of severe muscle and bone pain and actually had to take vicodin to manage it. I also experienced chills and was completely exhausted. I never take a nap, but needed one for the first few weeks. I also had so much pain in my shoulder joint during the first week on the meds, I had a panic attack because I thought I was having a heart attack.

 

All that to say, I think it is actually a good sign that the meds are working. I did not have an overnight recovery, but about 3 or 4 weeks into treatment, I noticed my joints were no longer hurting, I began sleeping through the night, was able to exercise again, had more energy, etc., etc.

 

I hope you have success with your dd.

 

I will caution you that some lyme doctors will keep you on antibiotics forever if you let them. After 3 years of treatment, I was really starting to go downhill again and switched to an herbalist. I think I needed the antibiotic treatment for at least the first couple of years, but my body could only take so much of it. I'm doing very well now keeping my symptoms under control with the herbalist, exercise and diet.

 

Lisa

[Mom0012]

My gosh, I'm really scared now. She has been through SO MUCH! I will do all the detoxing I can for her. I also read bentonite (?) clay helps absorb all thr toxins when herxing.

 

 

The dr never mentioned staggering the meds. She just took her second dose.

 

She can't tolerate heat. She has no body fat at all and suffers severe hot flashes that wake her up at night. She has a fan on her at all times. She really couldn't tolerate high heat treatment. :sad: i do hope this symptom goes away with treatment because nobody has any idea about her body temp regulation and she has now seen 26 doctors. :crying:

 

I did not stagger meds at first. For a period of time, I was on doxycycline every day. I can't remember for how long. Once I had reached a point where I was stable, my doctor added in another antibiotic and began pulsing them -- like M, W, and F for 3 weeks and then one week off.

 

I had trouble with body temp regulation, too. I would be dripping with sweat even when I was blow drying my hair or when I would talk to someone about anything I had any kind of emotions about at all. My son is on the swim team and I could never sit in and watch him practice because of the temperature of the pool area. It's like my parasympathetic system was totally out of control. My doctor put me on a small dose of a beta blocker and that was like a miracle for me. Not just for the overheating, but also for anxiety.

 

Lisa

ETA: Kenneth Singleton's book was very helpful to me. I can't remember the name of it now, but I thought it was worth reading. It explains all the different antibiotics and why certain combinations are selected.

Edited October 25, 2012 by LisaTheresa

[Spryte]

I did not stagger meds at first. For a period of time, I was on doxycycline every day. I can't remember for how long. Once I had reached a point where I was stable, my doctor added in another antibiotic and began pulsing them -- like M, W, and F for 3 weeks and then one week off.

 

Oh, I hope what I mentioned wasn't confusing. The above description, I've generally heard described as pulsing.

 

What I was suggesting that my LLMD often recommends is that when one is starting 2 - 3 new meds, one start only one new med at a time. So, for example, one would take doxy for a period of days before then adding in zith. The reason being that if there is an adverse reaction (esp an allergic reaction), one knows which new med is the culprit.

 

Sorry for any confusion.

 

Denise, how is your DD today? I hope you are both hanging in there!

Edited October 25, 2012 by Spryte

[Denisemomof4]

I did not stagger meds at first. For a period of time, I was on doxycycline every day. I can't remember for how long. Once I had reached a point where I was stable, my doctor added in another antibiotic and began pulsing them -- like M, W, and F for 3 weeks and then one week off.

 

I had trouble with body temp regulation, too. I would be dripping with sweat even when I was blow drying my hair or when I would talk to someone about anything I had any kind of emotions about at all. My son is on the swim team and I could never sit in and watch him practice because of the temperature of the pool area. It's like my parasympathetic system was totally out of control. My doctor put me on a small dose of a beta blocker and that was like a miracle for me. Not just for the overheating, but also for anxiety.

 

Lisa

ETA: Kenneth Singleton's book was very helpful to me. I can't remember the name of it now, but I thought it was worth reading. It explains all the different antibiotics and why certain combinations are selected.

 

THERE'S HOPE that her hot flashes may go away! Thank you SO MUCH for sharing!

 

I'm also thankful for the info. on clay baths. I had read about consuming clay to wipe out toxins.:confused:

 

dd is doing surprisingly well today. She has been drinking lemon water and I made her a green smoothie, both to help detox. She needs to be well in 5.5 weeks as we're going to celebrate her 13th birthday in NYC!

[Denisemomof4]

Oh, I hope what I mentioned wasn't confusing. The above description, I've generally heard described as pulsing.

 

What I was suggesting that my LLMD often recommends is that when one is starting 2 - 3 new meds, one start only one new med at a time. So, for example, one would take doxy for a period of days before then adding in zith. The reason being that if there is an adverse reaction (esp an allergic reaction), one knows which new med is the culprit.

 

Sorry for any confusion.

 

Denise, how is your DD today? I hope you are both hanging in there!

 

she is doing well, thanks! Her legs still hurt and she's quite tired but not sick. :hurray:

 

She started one med in the morning and then took both in the evening. The one that makes the stomach upset is taken only at night, along with the other pill. if that makes sense.:tongue_smilie: