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I have been taking 100 mg/day minocycline for the last year in an effort to treat my “atypical” arthritis. I have seen improvement, but not as much as I hoped. I'm still hopeful and working with Dr. S. My question is this: does minocycline offer protection against Lyme disease? I ask because in the last month I have already found 4 ticks on me…luckily not yet engorged but firmly attached. They were lone star ticks. The dr. had me switch to doxycycline 200 mg/day for a week, but that's it, and I am wondering if I am protected due to the mino. especially if I increase it to 100 mg twice a day? Also, my 6 year old daughter got 4 deer ticks (embedded but not engorged) in one day about a week ago…should we do something preventative, or wait to see if she has any problems? I know there are a lot of Lyme experienced folks on this board, and would appreciate any insight! Any tips on clearing the yard of ticks but keeping it safe for kids and pets?!?!
[user=411]magsmc[/user] wrote:
I have been taking 100 mg/day minocycline for the last year in an effort to treat my “atypical” arthritis. I have seen improvement, but not as much as I hoped. I'm still hopeful and working with Dr. S. My question is this: does minocycline offer protection against Lyme disease?
Also, my 6 year old daughter got 4 deer ticks (embedded but not engorged) in one day about a week ago…should we do something preventative, or wait to see if she has any problems?
Hi Mags,
A similar situation happened for me last Fall when my 17 year old daughter had an embedded tick between her toes. At first, she thought she'd injured her toe when she woke up one morning. I said we'd take her for X-rays that night if it was still hurting when she got home. So, she went to school, went to her swim training, came home, had a shower before dinner and, by this time, was not able to put her full weight on her foot and was limping badly. Her middle toe was red, swollen and like a sausage. I took a good close look and tried to see if the toe would bend and as I separated her toes found a small nymphal deer tick deeply embedded. I removed the tick carefully – you're supposed to l(rather than squeeze) gently tug directly upwards with tweezers. It came out whole and I put it in a baggie.
We then ran down to the walk-in clinic, as it was about 7pm by this time…she got seen by a glib, tired physician who told her that all she could do with give the prophylactic 2 capsules of doxy. 😯 So, next day we got an appt with her pediatrician, but as they fit us in quickly, we didn't have the choice of her usual doc. Instead it was an infectious disease physician and the receptionist said, “You're so lucky! He's the only one on call at this site and he just happens to be here tonight!” :sick: I thought…”Oh, great.” Well, this ID doc took a look at her red, swollen, clearly infected toe and said there was nothing he could do except get her tested and, if it came back positive, he'd treat her with the standard 2 to 4 weeks of doxy. So, I then told him about how my PCP had waited to treat me and that two ELISA tests came back equivocal in spite of the doc seeing my two rashes. This waste of time triggered very severe RA within 2 months. I said I did not want this to happen to my daughter and would he please give her a prophylactic dose for one month so we could avert this possibility. He then went on a rant about he was trained by the best Lyme docs in the nation – two of the very docs who wrote the restrictive IDSA Lyme tx guidelines! He also said all he could do was wait to see if she presented with any symptoms and to get her tested for Lyme every two weeks for the next two months…in spite of the fact that he fully admitted that the tests were notoriously inaccurate.
So, I knew I was in a losing battle saying it might be a bit late by the time she got symptoms (like it had been for me), walked out and called my LLMD the next day. They fit her in within a couple days and my doc took one look at her toe and said the redness could well be a Lyme EM rash that was wrapped around the toe. He sent her for an EKG (Lyme gets in the heart), a full panel of bloodwork and some special tests and put her immediately on Doryx 100mg 3 times a day for one month, after which he did more bloodwork. Her immune complexes were high, so he said she was fighting something and just to be sure, he gave her another month of doxy at the same dose and asked us to pulse it in two weeks with one week between to see if we could elicit a herx. She did quite well, though felt a bit washed out for the duration. I still keep a close watch on her, though, because Lyme and its coinfections are tricky organisms.
The different standards of care are ridiculous with Lyme, so you really have to do your research and figure out if it is worth waiting to see if your child starts presenting with symptoms or whether you'd rather avert that possibility. If you've kept the ticks, you can also send them in a baggie, stuck between two wads of damp cotton wool, to IGeneX labs for testing of Lyme and coinfections. This is what my LLMD suggested, but knowing he was willing to treat her anyway and we got it nice and early, I didn't bother with the tick testing.
In early cases of Lyme, doxycycline is thought to be enough to control the disease. In late, chronic cases of Lyme, unfortunately, doxy (or mino) isn't usually enough. The sickest patients tend to be coinfected with anything else the ticks may have passed along (commonly, babesiosis, bartonella, erhlichiosis, tularemia, mycoplasma, etc). Sometimes, even early treatment with a month of doxy isn't enough. Our friend is on that roller coaster now with neurological Lyme – he was treated with doxy immediately when he got an EM rash, was lucky and tested positive on his Lyme WB, but his infectious disease doc keeps giving him a month of doxy, he gets better and then worsens when he comes off again. She just sent him for a spinal tap for proof of late-Lyme so he could get IVs and it came back negative, so now she will no longer be able to treat him and it will go in his record as “post-Lyme syndrome.” It's thought that 50% of people don't get a rash and won't test positive, so these people don't even get the treatment our friend got…which was clearly not enough in his case.
If you've kept the ticks, you can send them to IGeneX without a physician script (but suggest photographing them before sending and any rashes that might appear, too). You just fill out their online form and send the tick as per their instructions. With any tick bite, however, it is not worth waiting to see if a rash or symptoms develop but to get on a month of doxy right away. Chronic cases of Lyme should see a Lyme Literate physician to ensure coinfections are being addressed.
Hope this helps, Mags. So sorry you and your daughter are going thru this issue right now, but you're so wise to get this sorted out. In the case of Lyme, early treatment is far safer than trying to treat refractory chronic Lyme.
As for tick prevention, there are plenty of websites that offer tips on how to avoid ticks, but the unfortunate side-bar here is that every state in the US has now reported cases of Lyme and it's almost impossible to avoid them. They evacuated a plane last year as a woman found several ticks on the seats when boarding! We put tick oil on our pets, but they still carry them in from outdoors as hitchhikers on their fur, depositing them on our furniture, carpets and beds. You can fence your yard to prevent deer coming thru, but other smaller animals carry ticks, too…like racoons, squirrels, white-footed mice, etc.
The Turn The Corner Foundation is a Lyme Literate website with an impressive Medical Advisory board. You'll find tips for prevention under the Lyme Info tab:
http://www.turnthecorner.org/aboutus.htm
If you need an LLMD listing for your state, I'd be happy to send it to you.
Peace, Maz
Maz, all I can say is your daughter is one lucky girl to have a Mom like you! 🙂
Magsmc, get your daughter some treatment, ASAP!
[user=854]tainabell[/user] wrote:
Maz, all I can say is your daughter is one lucky girl to have a Mom like you! 🙂
Thanks, Jen…wish I felt as lucky, but now I get pretty jumpy whenever she becomes unwell or overly fatigued. 🙁 A couple weeks ago, she awoke and couldn't bend her wrist. Of course, I immediately was thinking, “blasted Lyme is back!” :sick: I waited a day or two before calling the doc and it resolved on its own, thankfully. I think the best we can hope, until a cure is found, is that our Lyme will go into remission and our immune systems will remain strong enough to keep it in check. I don't want my daughter on the same tredmill as me, but will not hesitate to get her back to the LLMD and back on antibiotics if necessary either. :doh:
How are you doing, Jen? This is a long road, but have you noticed any recent improvements?
Peace, Maz
Yup, I actually have made some progress. I'm going to post a new thread on my progress tonight, so look out for it!!
Thank you for sharing your experiences and giving input. This leaves me with further questions:
1) Am I protected from Lyme due to being on 100 mg mino daily?
2) Would it be beneficial for me to switch to doxy rather than mino for some period of time? How does this impact my overall AP?
3) How can a 6 year old be preventatively treated for Lyme, since she can't take tetracyclines? I have spoken to 3 drs. who all say there is no need to do anything unless she develops symptoms. By the way it has been a week, and she has not shown any signs of skin irritation or other symptoms.
4) I did save the ticks…how would I go about sending them off to be tested and could this be done in a timely enough manner to then decide about preventativce treatment?
Thanks again!!! This is so stressful!
[user=411]magsmc[/user] wrote:
1) Am I protected from Lyme due to being on 100 mg mino daily?
2) Would it be beneficial for me to switch to doxy rather than mino for some period of time? How does this impact my overall AP?
3) How can a 6 year old be preventatively treated for Lyme, since she can't take tetracyclines? I have spoken to 3 drs. who all say there is no need to do anything unless she develops symptoms. By the way it has been a week, and she has not shown any signs of skin irritation or other symptoms.
4) I did save the ticks…how would I go about sending them off to be tested and could this be done in a timely enough manner to then decide about preventativce treatment?
Hi Mags,
Will try to answer as per your points above as best I know…others may be able to chime in with more info for you:
1. No, not necessarily. Certain coinfections of Lyme require different treatments. Also, the dosages and combinations used for Lyme vary significantly from AP. Here is a PDF of Dr B's Lyme Treatment Guidelines. It's long, but worth printing out to understand the complexities of Lyme treatments:
http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf
My ideal doc would be a combo between an AP doc and a Lyme doc, as AP docs understand the hypersensitivity issues of the rheumatic, but Lyme docs are open to using the full artillery to hit all the infections, if necessary.
2. Unfortunately, this is something you'd need to discuss with a Lyme Literate physician, as protocols must be individualised. Doxy is often preferred to mino, because the doses used in Lyme are generally much higher and mino tends to have unsettling side-effects at higher doses (like vertigo).
100mg doxy = 100mg mino, however my daughter was put on 100mg doxy 3 times a day for early Lyme. Initially, I was on 750mg tetracycline twice a day. 250mg tetracycline = 100mg mino or doxy, so the equivalent of my treatment was 600mg mino or doxy per day. The treatment for chronic and early Lyme differs, but generally speaking, those with chronic Lyme are also on various combinations to hit the coinfections, too. If you click on my Personal Progress Thread in my sig line, you'll note I was on tetracycline, biaxin, plaquenil and bicillin IM shots in my first year, along with diflucan (the Shardt Protocol).
3. Ampicillin is normally given to pediatric Lyme patients in place of the tetracyclines. Azithromycin is also sometimes used. Mags, the response you got from those 3 physicians was the same response I got from my daughter's pediatrician. 🙁 This is a big problem everywhere until the IDSA treatment guidelines get changed for the better.
4. To get a tick tested at IGeneX, go to http://www.IGeneX.com. Click on “Forms and sample requirements” and then click on the “Test request forms” in the dropdown menu. A pdf of the tick testing form can be printed off from there. Here in CT, we can send ticks to the Dept of Health for free testing, however the testing methods are probably just as sketchy as standard Lyme tests and they may not test for coinfections. You'd have to call IGeneX for turnaround time on the tick-testing. Normally, for bloodwork, it's about 2 weeks from when they receive the sample, but may be different for tick testing. It's said that if treatment can be commenced when the rash appears that this should ameliorate progression, but unfortunately only around half of those infected will get a rash.
Hope this helps a bit. These are difficult decisions to make for ourselves, let alone our children, so I know how you feel. If you decide to pursue this further, I have a LLMD listing for the US – just need your location.
Peace, Maz
Hi Magsmc,
I some how missed this post. There is something you can do in your yard to decrease the tick population. I was told by several farmers here in Wisconsin that to prevent their cows & cattle from getting ticks, they spread crushed lime found at any home improvement center like Home Depot,in their animals bedding/hay. They would also sprinkle crushed lime over their yard or animals grazing area the night before a storm. The lime would then get into the ground and apparently, the ticks can not breath and just die off in this environment.Kim,
Did you put the lime in your planting beds and did it work? Kim is a gardener like me, but was having trouble with ticks constantly getting on her scalp. Hey, Kim, chime in here anytime.Good luck. These stinkin critters gotta go!
Happy days!
patti[user=287]Patti D[/user] wrote:
Kim,
Did you put the lime in your planting beds and did it work? Kim is a gardener like me, but was having trouble with ticks constantly getting on her scalp. Hey, Kim, chime in here anytime.Good luck. These stinkin critters gotta go!
Patti, sorry for not responding sooner, but I've been out of town, still am actually and haven't had much computer time. Yes, we put the lime in the back woodland garden where all of my 20+ tick bites have come from. I shouldn't say “we” because my husband did it for me and was not too happy about it because he came in looking like he had been flour-bombed. So far, so good. I'm also getting better about wearing a hat and always spray my clothes.
Happy tick-free gardening. :blush:
Thanks for the tip…….I'm desperately trying to avoid being an indoor hermit. :doh:
kim
Well, this ID doc took a look at her red, swollen, clearly infected toe and said there was nothing he could do except get her tested and, if it came back positive, he'd treat her with the standard 2 to 4 weeks of doxy. So, I then told him about how my PCP had waited to treat me and that two ELISA tests came back equivocal in spite of the doc seeing my two rashes. This waste of time triggered very severe RA within 2 months. I said I did not want this to happen to my daughter and would he please give her a prophylactic dose for one month so we could avert this possibility. He then went on a rant about he was trained by the best Lyme docs in the nation – two of the very docs who wrote the restrictive IDSA Lyme tx guidelines! He also said all he could do was wait to see if she presented with any symptoms and to get her tested for Lyme every two weeks for the next two months…in spite of the fact that he fully admitted that the tests were notoriously inaccurate.
This story blows my mind. Why wouldn't he give her a cheap, low-risk drug (doxy) under these circumstances?! EGO is a dangerous thing.
S.
[user=411]magsmc[/user] wrote:
I have been taking 100 mg/day minocycline for the last year in an effort to treat my “atypical” arthritis. I have seen improvement, but not as much as I hoped. I'm still hopeful and working with Dr. S. My question is this: does minocycline offer protection against Lyme disease? I ask because in the last month I have already found 4 ticks on me…luckily not yet engorged but firmly attached. They were lone star ticks. The dr. had me switch to doxycycline 200 mg/day for a week, but that's it, and I am wondering if I am protected due to the mino. especially if I increase it to 100 mg twice a day? Also, my 6 year old daughter got 4 deer ticks (embedded but not engorged) in one day about a week ago…should we do something preventative, or wait to see if she has any problems? I know there are a lot of Lyme experienced folks on this board, and would appreciate any insight! Any tips on clearing the yard of ticks but keeping it safe for kids and pets?!?!
The mino does nothing for my Lyme, I needed the doxy but had to change to the mino for other reasons. If you are experiencing a type of what I thought was vertigo, but was the Lyme going crazy, please speak to your Dr. about a Cephalosporin which is a type of Penecillin, in conjunction with Azithromycin. The Ceph. gets through the blood brain barrier in late stage Lyme. My biggest mistake was to think I could come off it.
There is a wonderful book you can purchase by Pamela Weintraub with various different drugs used. It is worth getting. Gets pretty nasty if not treated, as Maz says there are other bacteria usually given by the tick as well, plus what you already have. Please make sure you ask for a systemic antifungal, one you can work up to taking daily, or you will develope other problems down the track.
Hope this helps as treatments seem to vary.
Hi Magsmc,
I was on the doxy for one month for the treatment of lyme. All of my symptoms disappeared and 4 months later lyme symptoms came back full force. I have managed pretty good on the mino for 1 and 1/2 years. I started at 100mg/2x daily and now am down to 100mg daily. This is all I take. I am not without any symptoms but I am managing to do everything I did before lyme/RA. Some days are better than others but all days are better than 2 years ago. I would never have dreamed it would take this long, but I am very grateful that I have come this far.
I am not afraid to mix things up like Rosemary, but will keep on keeping this way until the need to change arrives.
I was very afraid to lower my dosage from 200mg of mino to 100 mg, but got a lot of support from this great group here and so far so good.
I am sending well wishes your way!
Happy days!
PattiOh ya Kim,
Glad to hear you did some “crop dusting.” I have not seen one tick yet but was praying like no ones business as I was stacking freshly cut wood next to the forest. I was so creeped out and jumped right in the shower when it started to rain. I am not going out there to finish the job yet, but it has to get done. I guess I will have to put the deet/bug spray on. Have you got anything safer to use?
Happy days!
Patti[user=287]Patti D[/user] wrote:
I am not without any symptoms but I am managing to do everything I did before lyme/RA. Some days are better than others but all days are better than 2 years ago. I would never have dreamed it would take this long, but I am very grateful that I have come this far.
Such encouraging words!! Glad you are doing so well. I've got a ways to go. My daughter asked me to accompany her (and 4 1/2 month old grandson) to Whitnall Park on Tuesday to see the spring flowers. Didn't do a lot of walking, but enjoyed the outing tremendously!! The tulips were gorgeous. Gave me a lot of hope!! I see the doctor on Wednesday. Had a bunch of bloodwork done–we'll see what's happening.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
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