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Wayne, My feet have hurt in all the ways you describe. The incredibly painful top of the foot pain was diagnosed as gout which was very odd sense at the time I ate mostly vegetarian and none of the foods known to trigger gout. Turned out I had a broken foot. I too had the achilles heel pain which my rheumatologist said is a sign of gout. The gout medicine did nothing for me except make me very sick to my stomach and my heart had electrical impulses from colcachine (sp?) which was very frightening.
Has your doctor considered pseudo-gout?
The right diet for you is critical to your body responding and healing well. I consider diet to be the foundation of all other healing and it sounds like you are already at work with that. Early on, I took the ALCAT blood test for food allergies and was stunned at some of the healthy foods I reacted to. Cutting them out of my diet made a huge difference.
Inflammation in every joint was my RA and I was seriously sick with so much inflammation in me. From the beginning, the focus of my doctors has been to increase detox and remove triggers to the inflammation. It is an ongoing process even now 4 yrs into this but I am living life well and seldom ever have to resort to Advil for pain relief.
I ride horses so when I say I am living life well, I really mean it.
I refused any immune suppressing medication for almost 2 yrs. The doctor I work with is a member of ILADS, she is a strong believer in infectious causes to auto-immune disorders and she is a rheumatologist so I really feel I have the best of all worlds with her. She eventually convinced me to take Enbrel and it has been a big inflammation stopper. I take a very low dose. Just 25 mg weekly and I can drop back on that without any problem whenever we AREN'T going after new pathogens with aggression. At those times, such as now when I am on prescription meds for parasites in my gut, I must use the Enbrel to stay painfree and I thank God for it.
She is adamantly against steroids of any kind as they do promote bacterial, viral, parasitical growth.
Exercize to whatever level you can tolerate will help too as well as the other things mentioned here.
Susan
Hi Donna,
Thanks for replying, a friend of mine swears by Serrepeptase, and few yeasr ago i was taking 3 aday enteric coated ones to help inflammation,and felt good for awhile, before i knew i had lyme, but i was getting flare ups still, so i thought may as well stop.Yes epsom salts definately helps me.
Take care wayne
Hi Susan,
Thanks for your advice, i really dont know what to take anymore, i seem to have pain every day in just my foot, but that obiviously is stopping me working as i am a Roofer and cant get up a ladder.
I was very positive after seeing Dr D at Breakspear, as he said he could help, but i had a letter from him saying i do have Lyme and Bartonella, which he thought the Minocycline and Rifampicin would sort out, maybe to early but the constant flare ups are really bad. He know says i produce a challenging problem with lots of food sensitivities, and he suggests seeing his colleague about low dose immunotherapy ( whatever that is ).Thanks Wayne.
Hi Noel,
Thanks for your advice, not sure if i can stay with this for 2 – 3 months, but will try. glad your doing better.
Wayne
Wayne,
I understand your need to work. Luckily I have a desk job and could just hobble around. I honestly don't know any quick relief methods except those awful drugs that help initially but bite you in the rear down the road.
Eat a gout free diet just to be safe. I recall that is avoiding all foods high in uric acid like red meat and shrimp ( did they test your uric acid levels?) Also, many many folks said eating cherries and drinking cherry juice stops gout pain and keeps it from coming back. Something in the cherries reduces uric acid levels quickly.
For me, it all turned out to be a broken foot and 4 weeks time did a lot to fix the problem even though the doctors missed the break and was doing nothing to immobilize the foot.
Good luck to you. Whatever you decide to do, don't stop the treatment for infections. You may have to use temporary symptom relief but you must eliminate the bugs if you want to heal.
Susan
Hi Wayne
Sounds like lyme in your foot. During my nearly 7 years of lyme but not started treatment until 4 years in I found even on antibiotics symptoms moved to different areas. Each new area would start with a hot inflamed area of skin and I would think oh here it goes again in a rather abstract way and then after a few days the pain would start sometimes in my feet it would feel like all the little bones were broken. Same in my ankles and walking on uneven ground was so painful especially the slopes on the pavements to allow cars to cross. In fact walking at all at times was painful.
I think every joint in my body was affected over a period of time. It lasted two years in my shoulders even whilst on treatment. Longer in my hips and I still have a residue in knees feet (mainly hot throbby) and groin. But my arms are back to normal and have been for over a year.
It had affected wrists knuckles and finger joints progressing whilst on doxycycline but strangely seemed to regrees more on Amoxycillin and when Clarythromycin was added I made the most progress. Even swallowing problems went away on Clarythromycin/amoxy which had been quite the scarriest symptom.
I don't often pop by to Roadback because I get so involved with answering similar questions on Eurolyme as well as feeding my Lyme blog. I think this is a wonderful site but for lyme if you are in the UK I would recommend you ask your question on Eurolyme because there is a wealth of specialist knowledge amongst the patients there as well as much information in the files. A word of warning though use a seperate e mail address as the volume of posts can be many a day.
I found aspirin 300mg three times a day really helped with my arthritis if dispersible and with food and water it helps to protect the stomach. I believe it worked as an anti inflamatory rather than pain killer and it helped my muscle weakness as well as joints but took at least an hour to work which is odd as for pain relief it works in 20 mins. My LLMD Dr O and GP found my claims rather surprising but with Lyme it is a question of finding what works for you. On these and antibiotics I managed to get off steroids which I'd been on 20 months yes a complete no no for lyme but GP though I had PMR. Bye the way I know a local patient who was advised by Dr D to get off steroids asap because of the problems with Lyme so I was surprised he advised gP to give although topical is not as bad as tablet.
On aspirin I eventually was able to reduce to 1x300mg in the mornings when pain and stiffness was worst and one an hour before bedtime which helped to settle restless legs itching throbbing hot areas and allowed better quality sleep.
Aspirin was so effective that when I went for a medical or to see LLMD I would stop taking it and so that my symptoms would be seen for what they were, the medical doctor offered to help me out of the chair and recommended early retirement. Now I am virtually 100% with only a few mild symptoms so I can cycle and garden again.
Lyme is such a long struggle to find what works for you good luck.
Susan
Thanks, i have a while ago been tested for uric acid level, and it was ok, did try the cherries and even drank cherry juice, st johns wort, nettle pills all didnt help, but i will t ry to keep up the mino and rifampicin,
Wayne
Joanne
wow, youve done well, yes them symptoms you had feel like mine, maybe i should just start again, as im changing doseage of everything in desperation, and forget what is working better and when,i was surprised i had steroid injection, maybe like you said everyone reacts different, feel its made things worse, it definately hasnt helped this time.
got an appointment at Breakspear soon so maybe they can help with food issues.Wayne
Wayne
I am still not totally sold on the food issues for most of us lyme patients. I believe if we follow a good balanced diet that with antibiotics the other issues settle in time. I do sometimes think Breakspear go OTT with all tests for allergies but then my LLMD in Cardiff does treat very conservatively compared with USA LLMD's and Dr D. It so far has worked ok for me but may not for others.
As I say we all need to get as well informed as possible and be our own best advocates. What works for one person on certain symptoms does not work for others.
Good luck I am told Dr D has been away or is away this week.
Joanne
[user=1876]WAYNE HARGREAVES[/user] wrote:
Hi Noel,
Thanks for your advice, not sure if i can stay with this for 2 – 3 months, but will try. glad your doing better.
Wayne
Wayne,
I know exactly where you're coming from, was there myself. It?s bloody hard when there is no let up at all and it's as painful as it is. I would have given almost anything for some relief.
I got through it and you will too. Although I seem to be chasing my disease around my body. One place gets back to completely normal then it starts some where else but not as painful as my feet were.
When things get really tough I try backing off the abx a little say half it for a week, not completely because I've found that it can induce an even bigger herx.
Regards
Noel
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