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Ryan is in an enormous amount of pain today and this really does not happen to him. Sometimes he is in pain on his feet if walks too much like at a theme park. Can anyone give me any ideas to relieve him a little. We have been putting cold and hot packs on him, wax therapy on his hands, ibuprofin, nothing is helping. He has an extremely large tolerance for pain so I know he is in a lot of trouble right now. He said the pain level in his right foot is about a 7 out of 10 which would be a 12 out of 10 for most of us. Any help would be appreciated!
Sue — Ryans' Mom
Sue–
I have always felt that part of my diagnosis includes gout. My right ankle gave me such pain that movement was intolerable and even a bed sheet caused me a lot of grief. Indomethacin was the only pain relief that worked for me.
I am so sorry to hear that Ryan is in such pain. I wish him all the best and will keep him in my prayers.
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?
I could probably pour it on there — I want to get him in the sauna as well. Does anyone know if this could be a herx from out of nowhere? He has been on the same meds since December.
[user=1274]luvmywonderfulkids[/user] wrote:
What is indo…? Can we buy it over the counter?
This is a prescription medication–here is some information–
http://www.medicinenet.com/indomethacin/article.htm
Cat's claw is an herb that is supposed to be as potent as indomethacin.
http://www.rain-tree.com/catclaw.htm
When I was first put on it in December '08 I was able to drop my morning dose of indo. Of late I have needed to take my morning dose again, but right now I think my situation is different in as I think I need to strengthen my muscles, tendons, and ligaments and I am experiencing pain from those areas.
Good luck to you–
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?
I am so sorry your son is having a rough time. Has he tried taking a hydrogen peroxide/epsom salts bath, or just soaking his feet in the solution? It may help the pain, and just in case it is a herx, will help to detox. Sometime the pain just comes and goes, for no apparent reason, and is so frustrating to treat!
nancy
I just realized Ryan has lyme too. Migratory pain is so consistent with lyme. If he is being treated for lyme, it could be a herx.
I don't know if it would be strong enough, or work fast enough, but there is a traumeel cream that he could try.
[user=1274]luvmywonderfulkids[/user] wrote:
Does anyone know if this could be a herx from out of nowhere? He has been on the same meds since December.
Hi Sue,
Herxing came in waves for me and were particularly bad in the first 3 months of Lyme treatments, but have continued on since. Over time, these episodes have become spaced further apart, shorter in duration and less intense.
As I understand it, spirochetes revert to cystic form when under abx attack and many Lymies, according to my LLMD, report herxing on an almost clockwork, monthly basis. Why this happens is unclear, but may be due to the organisms being more susceptible at certain times of their life/reproduction cycle or that they sense something in their environment has changed and they revert back to spirochete. I was never able to tell the difference between flaring and herxing until after the event. Herxing tended to be shorter-lived than flaring and came with some small improvments when the worst passed. Flares, on the other hand, lasted longer and heralded worsening.
These times are very unnerving, I know, and empathize with you and Ryan. It's hard going through it, but it can also be hard watching a loved one go through it. If it wasn't for my hubby, reminding me that I'd been down that road before and come through during those difficult herxes, then it would have been very hard…the mind plays big tricks on us when in pain and it feels like you're just going down-down-down. Then, suddenly the herx would pass and it was like it never happened….and I'd start to notice I was able to do things I wasn't able to do before, like twist off a water bottle cap, squeeze toothpaste, etc. It's a very strange phenomenon and the only way I could gauge my progress was to look back in retrospect to see what improvments had occured over time.
Sue, everyone has already given great suggestions to get through this episode – whether flare or herx. Does Ryan take the lemon/olive oil detox drink daily, too? One thing that helped my pain levels during a herx/flare was to use Tri-salts…a half tspn in a mug of hot water. It's tasteless, but helped reduce acidity in my muscles and helped them relax. I used all the other methods, too, and everything had some amount of supportive effect….hot pararffin baths for hands and feet, epsoms/peroxide baths, sauna, etc. Felt like a full-time job some days. :doh:
Peace, Maz
What are tri-salts? We just gave him cat's claw as well. I sure hope it is a herx and not that he has turned a bad corner!
[user=1274]luvmywonderfulkids[/user] wrote:
What are tri-salts? We just gave him cat's claw as well. I sure hope it is a herx and not that he has turned a bad corner!
Hi Sue,
Here is a link to the Tri-salts I use:
http://www.absolutelythepurest.com/supplements/Tri%20Salts.html
Very important not to use it near to meals (need stomach acid to digest food) or tetracyclines (which bind to minerals). I leave a good 2 hour window either side of food or taking my doxy.
Peace, Maz
Hi Sue-so sorry to hear of Ryan's troubles. I have read his story and as a mom, I feel for you.
Would it help to take my appointment with Dr.S on April 26th? I'm not sure you could get travel arrangements that quickly, but let me know. I would hate to see my son in pain-so take it if you can. Or maybe Dr.S can sneak me in quickly too-I don't need the IV's like Ryan; I just need a prescription for Micocin. I hate to ask too much of Dr.S, so I could take your appointment in June.
Let me know what you think-I'm happy to help!
~jen
IMO, Ryan has flare up. He is stressed out for the upcoming trip to Iowa. While you are making him comfortable, you could also let him relax, thinking positively about the treatment. Does he know he is going to get IV? Even though he may not say anything, his little body is reacting to the stress.
When I flare up, both of my feet hurt, feeling like on fire. Aleve helps me a lot. I don't know if Ryan takes bath, perhaps bath can relax him. Also let him listen to his favorite music…
Feel for you, Sue. Hang in there.
JB
How absolutely wonderful of you! We scheduled it in June so he would not miss so much school. This is really the first time he has been like this. usually, it is problems with his digestive system! If he continues like this, I will definitely call Dr. S and see what we should do. Thank you again for your generosity.
Sue
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