My son's arthritis is just not budging. He has never had any neuro issues that we could see, except for a short-lived eye droop that seemed to be caused by Lariam.
His arthritis is bilateral and everywhere: hips, shoulders, elbow, ankles, lower back. It's in the ligaments/tendons where they enter the joint.
Has anyone had this profile? What worked to get rid of the inflamed joints?
I just feel like this is a different kind of Lyme.
[ 03-27-2011, 01:25 PM: Message edited by: marypart ]
Posted by Lymetoo (Member # 743) on :
Mine was mostly all arthritic. I was treated for Lyme and babesia.
I took just about everything. Can't say what worked.. but I took a lot of Biaxin and flagyl.
Has he also tried going off gluten? That helped my muscle/joint pain too.
Posted by lpkayak (Member # 5230) on :
sugar makes it worse
good quality cosamine and fish oil help
i can't get by without ibuprofen either
not sure which abx are better or worse...if ketes cause it no matter what the sx thats what you need to kill
i was on high dose amox and zith for two years
also art when mepron didn't work
much later rifampin got bar...but for me that was more psyc sx i think
Posted by Lymetoo (Member # 743) on :
Yes, sugar makes it worse. Might try the inflammation diet. And make sure he doesn't have yeast.
Posted by momlyme (Member # 27775) on :
I had bone crushing arthritis starting in 1993 when I was 23. Nothing touched the pain... from advil to percocets... the pain was driving me insane.
I tried tons of supplements, went back to college for chemistry and nutrition and basically became my own lab rat. Researching and trying anything that might lessen the pain.
When I first found this out it was 1997 and there was a company called New Image that had a pure grape seed extract product. I started with 3 pills with each meal and worked my way up to 9 pills with each meal. My pain was 100% gone in 5 days.
I tried taking less, and when the pain came back, I would take more. As long as I took enough I was pain free. At $30 a bottle and only 60 pills per bottle, I was spending $450 a month to stay pain free.
I have tried a ton of different companies over the years and I have only found one that is high enough quality where I can take 1-2 pills a day and stay pain free.
The company is a network marketing company called USANA... you can become a distributor to get the discount or you can usually find someone selling it on ebay. The product is called 'Proflavanol' and it is 100% grape seed extract.
I still take one proflavanol a day... sometimes I take a second. If I don't take it, the pain comes back.
I know of many other people who have had the same results I have had. From back pain to fibromyalgia.
That being said... it doesn't work for my son's pain.
Everyone is different.
Posted by Awake (Member # 29746) on :
I think it too soon for me to know for sure but...
I was diagnosed with Lyme and Babesia through testing and clinically diagnosed with Bart.
Treated first for Babesia for 5 months. I improved a LOT during that 5 months. And my Babesia symptoms seemed to be classic, sweating, shortness of breath, fog, etc.
After that treatment we switched to treating Lyme and Bart. Things went ok for 2 months then I slowly declined with horrible joint pain/bordering bone pain in all joints with whole body swelling.
Because we assumed these were Lyme/Bart symptoms I continued my treatment. Then after a couple more months my Babesia symptoms started coming back. Headache/neck pain, sweats, confusion, etc.
So a little less than one month ago my LLMD switched my treatment back to Babesia. And the weirdest thing happened. A week after starting treatment my neck and headache got worse for 2 days.
Then everything backed off. I mean my joints stopped crippling me. Doesn't make a lot of sense to me because joint pain is not a typical Babesia symptom. Though I know they say these diseases overlap.
I am still in shock at how well I am doing.
My current experience here is just pointing out again how everyone is different.
Tonight I pray for your son, Awake
Posted by chiquita incognita (Member # 30381) on :
I've seen a lot of people do really well with New Chapter Organics product called Zyflamend for joint pain. This is a blend of antioxidant herbs that also increase circulation (via the action of rosemary) which can help a lot. www.iherb.com or www.vitacost.com
CAUTION: Zyflamend contains knotweed (polygonum cuspidatum), oregano, and several berberine-containing herbs (goldthread and barberry, this is a yellow alkaloid which is anti-bacterial/anti-viral/anti-inflammatory). The combination could possibly contribute somewhat to herxing even if the dosages in this product are moderate. Be aware of this before taking it, ask your doctor if you need to graduate your dosages if taking these parallel herbs for lyme + co treatment, and watch for herxing, stay in touch with your doctor. Be sure to let your doctor know of any herbal or supplement products you use.
Many people also respond well to chondroitin mixed with MSM and glucosamine sulfate.
For anyone who wants a shellfish-free GS product, Kal makes one.
Some people also respond to BCQ (Boswelia, Curcumin and Quercitin). In my experience the Zyflamend by New CHapter Organics was best for most people, followed by chondroitin/MSM/glucosamine sulfate, and then followed last of all by the BCQ.
As Heather points out people are different and respond to different things.
Nettles (use good dosage) can be helpful over the long haul by facilitating the excretion of uric acid, which accumulates and affects joints, leading to arthritis. I would doubt this was the case with a young 'un and that it's more likely caused by lyme and co, but to assist the kidneys may not be a bad idea as part of a greater detox program, anyway.
Capsaicin gel applied to the joints can help, this contains capsicum or cayenne pepper, and dilates the arteries to allow more circulation to enter the area where it is applied. In so doing can be helpful with the pain. Follow instructions on the package carefully.
You can also make your own compress with cayenne, ginger or mustard powder and hot water, however caution is advised: An excess of 15 minutes can burn the skin, so careful! Watch for healthily pink skin but you do not want unhealthily red skin. NEVER!!! allow anybody with this compress to fall asleep, the skin can actually blister! Careful! Wipe the skin clean with a cool, damp cloth. Apply olive oil afterward to cool down and moisturize the area.
Grape seed extract as anti-oxidant makes a lot of sense. Thanks Heather!
Cool that you studied nutrition and chemistry in college! :-)
Best, CI
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor. This does not substitute for medical advice, is only for adjunct support. If you have any health related questions, talk to your doctor.
Posted by lpkayak (Member # 5230) on :
mom-great news i will be looking into that
awake-helpful to hear you stopped when tx was so hard on your body...i am stopping clind even tho the problem seems to b a heavy herx...too heavy
i have been having doubts about it but i cannot take care of myself when i take it
so good to know sometimes you can stop and get it another way
i have never herxed bad with art---my sx just et beter so i know it is possible
chiq-a lot of good info-thanks
Posted by Lymetoo (Member # 743) on :
I agree with Awake... Babesia could be a big part of the problem with arthritis. I had Lyme and babesia, no bart. So it had to be one of those.
I know when I herxed on meds for babs, I was in severe pain, esp in my spine.
So make sure he has been tested for babesia. And even if it's negative, ask the dr for a trial run of meds for it to see if he reacts.
Posted by marypart (Member # 27012) on :
Thanks everybody. He tested positive for Babesia Duncani (WA-1)
Did any of you have Duncani?
We're pretty focused on parasites right now: alinia plus a sequence of pulsed Rx anti-parasitics. He's also been doing IV chelation.
He was on Lariam-- but it showed some neurotoxic eyelid droop, and he was on biaxin but we've stopped it for awhile-- to focus on parasites I guess.
Thanks. Mary
Posted by jlp38 (Member # 27221) on :
IV C is really helping with my arthritis. I still have a loooong ways to go, but it's gotten me out of bed and I can actually get out of the house some.
![[Frown]](frown.gif)