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Hi,
I hope some of you can help, Im in bad pain at the moment, was doing really quite well on 200mg of Minocycline and 300mg of Rifampicin, I have had bad flareups that seem to last nearly every day at t he moment, Ive also been taking Diclofenic but had come off it a while ago.
This week i had a steriod depo medrone injection, in the past this has settled everything down and been pain free for about 2 months, but it is not working at all at t he moment.
My pain is on the top of my left foot between ankle and toes, sometimes it does go under my foot as it completely seizes up with redness and gets hot. Is this herxing or something else ?, Dr D at Breakspear thought i had co-infection Bartonella, but he is now wondering what is best, and suggesting more food antigen tests ( more money ), really thing Rifampicin has settled my shoulder pain down but not my foot, any ideas greatly needed, with thanks im in agony.Wayne
[user=1876]WAYNE HARGREAVES[/user] wrote:
My pain is on the top of my left foot between ankle and toes, sometimes it does go under my foot as it completely seizes up with redness and gets hot. Is this herxing or something else ?
Hi Wayne–
This sounds like it could be gout.
I'm sorry your are in such pain. I think you have got a lot of company. I'm working my way up to my full dose of treatment and hurting all the way. I've started to do very easy stretching exercises and using my recumbant bike to strengthen my body, which, however, has added to my pain. At the moment I wonder if there is something else going on????? too–1 1/2 years into treatment, I would like to be a bit further than this.
Sorry for the rant–:doh:.
Hope you get some relief–
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?
Hi Trudi,
Thanks for replying, they did say i had gout years ago, then decided was palindromic rhematisum, now lyme. Feel like just going round in circles. I had gout treatment and was still getting flare ups:headbang:
just need something to get it under control, take care Trudi, hope you also have better results
Wayne
[user=1876]WAYNE HARGREAVES[/user] wrote:
just need something to get it under control
Hi Wayne–
Indomethacin does the trick for me–
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?
Trudi,
I have been at it for 28 months now and I still have issues. This physical therapy is rough, but hopefully this will help with the upper body strength. I am finally getting off the floor by myself. Just keep on taking your meds and stay slow, yes sometimes time seems to stay still when we want to hurry up and get well.
Eva:D
Eva Holloway
[user=1876]WAYNE HARGREAVES[/user] wrote:
This week i had a steriod depo medrone injection, in the past this has settled everything down and been pain free for about 2 months, but it is not working at all at t he moment.
Hi Wayne,
Very sorry to hear you're having a rough time. Unfortunately, this is pretty par for the course with Lyme/coinfections and herxing and worsening of symptoms is to be expected. This is actually how Lyme docs gauge whether a particular abx is working or not. :crying: So sorry to be the bearer of this news.
Did Dr D give you the depo medrone injection? Unfortunately, this is a corticosteroid medication and is contraindicated for Lyme. 🙁 The bugs will be loving the immune-suppression, which could well be why it didn't work. Most LLMDs will advise against any form of immunesuppression. You can, however, safely take anti-inflam meds, if kept to a minimum to protect your gut….I know how the pain of PRA can be pretty rough, as I went through it before it evolved into all-out RA.
It's going to take time to work through these herxes, Wayne. Re: the food antigen tests, you really have to go with your own gut on this – we're all different and we each have our own triggers. I've personally tried to keep my focus on detoxing, eating as healthy as possible and cutting out the usual offenders, slowing down to heal and, if necessary, asking for something to help relieve the pain that is not immunosuppressive. Low dose naltrexone is now being used by Lyme docs over here and I don't know if Dr. D would rx it to you, but it might be worth looking into to help boost your immune function a bit. Here is a site to learn more:
http://www.lowdosenaltrexone.org/
Another Lyme med that helps with inflam is plaquenil. This is also used in the treatment of protozoan infections, like babesia, a common coinfection of Lyme. It takes a few months to fully kick in, but you might find it helpful and Dr. D would be able to prescribe this for you, provided it doesn't interact with anything else you're taking.
Hope something here might be of help to you, Wayne. Hang in there…it's very early days for you, right now…only a couple weeks in on the Rifampin and the timing is pretty on the mark for herxing. Just be sure to report all your symptoms to Dr D, as he may be able to adjust things to make your herxing more tolerable.
Peace, Maz
Hi Maz,
Great to hear from you, Yes dr d told my gp to give the steroid injection, he may of wanted me to just get up and about, last time they worked well, cant beleive it prob made the bugs harder to flush out, maybe like you said the Rifampicin is starting to work but just cut that to 300mg, i do feel what you and others are telling me that i am herxing, but the pain in the joint is worse than the pain i have from flare ups, at the moment i seem to be changing the dose of everything all the time, to see what i can tolerate without still affecting me getting about, maybe i should drop to 100mg of mino again.
It is true. isnt this herxing terrible, you did warn me, maybe expected to much to soon.
Also i suppose the ticks could of done me alot of damage, a long time ago.
I do try to eat healthy, always fresh dinners, my downfall is i have sweet tooth and crave sugary things, will try and cut biscuits out, Also my mother in law is a brilliant cook, but everything Italian usually has a tomato base or sauce involved and i am not sure if eating this brings flare ups on or not, ive stopped eating her food, but still get flare ups, maybe it has nothing to do with her cooking, really confused at moment what to eat :(.will go through your advice as always see what the gp can help with, take care to Maz:cool:, you really do help.
Wayne
HI,
cant get of hold of dr d at Breakspear, so my own gp has told me to take diclofenic and codeine phosphate to the max, to try and tide me over until things settle down, really hope im not putting off getting better quicker with all these different things.
Wayne
[user=236]Eva Holloway[/user] wrote:
yes sometimes time seems to stay still when we want to hurry up and get well.
Hi Eva–
Thanks for the words of encouragement!!
Although my knees aren't as swollen as at the beginning, they are still too swollen to get down on the floor–I wonder if I could get up from off the floor :). When I started seeing Dr. M it was my wish to be able to crawl after my grandson-to-be; he is now 16 months and walking. Oh, well.
I love to read about your improvements. You have really, really come a long way!!!
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?
Wayne,
When my feet were really bad, I would soak them in a foot bath that has jets and heat, adding both epsom salts and hydrogen peroxide. That seemed to work better than anything I could take, because nothing else seemed to ease that pain. It did eventaully pass, but it was a bad time for me.
Hope you get some relief soon.
Donna RA and Lyme
HI Donna,
Thanks for replying, yes i do soak in epsom salts, i also think it helps.
I noticed you take Serrapeptase, does it benefit, i used to take few years ago, but was having bad flare ups didnt know if it was helping and its not cheap is it, but that was before i had been found to have lyme, i also used to drink aloe vera juice was told that would be good, but dont know what to think now.take care Wayne
Hi Wayne,
?
I?ve just been through the exact same thing but would also get hit with a stabbing like cramp from the top of foot and the arch that would come and go in seconds..
I feel your agony because that?s just what it was for me. Nothing pain relief wise would touch it and it lasted almost 2
Hi Wayne,
The Serrapeptase is helping me in ways that other enzymes did not. My Doc tells me it will help to rid me of bio films, but I noted that my inflammation seems to be in better control since I started taking it. I will tell you that another member from this board wrote to me about being cautious with it, as it has been known to cause muscle flares in some, perhaps related to an allergy to it. Since you seemed to already have flare ups after use, I would be cautious about adding it back into the mix, but that is only my opinion. Yes, it is costly, the supplement I use is enteric coated, so I feel at least the money spent is not going to waste, since stomach acid won't eat it all up. Hope the epsom salt soaks are helping your feet.
Donna RA and Lyme
Hi Wayne,
Did the increase in foot pain occur subsequent to an increase in the dose of minocycline and/or rifampicin that you are taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil,
Not really, because i have since cut back to minocycline every other day, and also cut back to 300mg Rifampicin, but seems no matter what i do it soon comes back, at the moment i have one clear day a week with no pain, the rest of the time some pain somewhere in my foot, pain in other joints has gone, today i have achilles heel pain, ususally it s the top of my foot, getr red and feels like the skin will rip open.
thansk Wayne
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