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It's all so confusing. My son has been with a LLMD/AP doctor since April 12th, and he's on three antibiotics, nystatin for Candida, and wheat free, cows milk free, and starch free.
There doesn't seem to be much relief from the joint pain yet.
Have other people had multiple triggers?
-Mary
Mary – Antibiotic Protocols and Lyme protocols are all long term treatment regimes. It is likely that your son is in the herxing phase of treatment right now – initial worsening of symptoms caused by cell die off. The is plenty of info on the Jarisch-Herxheimer response (herx) on our main site – just press Home above and look in the Education section. And yes, most people on a Lyme protocol are treated for multiple infections and triggers – Leaky Gut (involving food sensitivities) and Candida are two of the most common. They can also cause joint pain. It is good that your son's doc is treating him for all. It is often not until around the 6 month mark that noticeable improvements kick in. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Mary,
I second what Lynnie says. This is definitely a slow process. It sounds like your son's LLMD has a good grasp of all the different angles that need to approached so it sounds like you are in good hands. Hopefully, things will start to ease up soon. Reading other people's success stories can keep you motivated when the going is tough.
It does take a while for the diet / treatment to make a positive difference. The diet has helped me immensely. (sugar free, gluten free, dairy free) If I screw up and eat a trigger, I feel it! Tonight, I have a lot more swelling than I've had in a while and realized that the kamut pasta we tried is not gluten free. Doc thought I could substitute cows milk cheese with goats milk cheese…that was actually a larger trigger. I know others have had trouble with goat cheese too, so watch out for that one!
Michele
I think my biggest worry is that we're focusing on the Lyme, and the Reactive Arthritis or possible Ankylosing Spondylitis needs something more.
Maybe he really needs anti-TNFs. He's B27, of course. And tests positive for Klebseilla and strep I just feel so powerless and conflicted.
-Mary
[user=2151]marypart[/user] wrote:
I think my biggest worry is that we're focusing on the Lyme, and the Reactive Arthritis or possible Ankylosing Spondylitis needs something more.
Maybe he really needs anti-TNFs. He's B27, of course. And tests positive for Klebseilla and strep I just feel so powerless and conflicted.
Mary, there is another registered member here, 10/09/09, who you could PM (private message) to have a chat. He was just diagnosed with Lyme disease and has been on Lyme protocols for his AS these past few months. Would it help to have someone your son or you can compare notes with who is taking a similar journey?
Peace, Maz
Just thought I would update you all.
We're feeling much more optimistic now that the doctor seems to have narrowed down the triggers.
Dr. Z says he's had Lyme for at least 6 months and maybe several years, but the thing that really put him over the edge is a parasite. He came back positive for a parasite, Cryptosporidium Parvum, probably picked up in April '09 on a trip to the carribean. I think the reason the Lyme never showed itself before is that he was on mino and doxy off and on from 2004 – 2008 for acne.
He's been on oral antibiotics for about 6 weeks now, and we just started a pulsed, cyclical stream of anti-parasite drugs that will go on for weeks. It starts with Alinia.
As for the Lyme, he starts IV antibiotics this week, after they put in a PICC line on Monday.
So we are optimistic that maybe his joint problems will subside with the treatment. As of now it includes both hips, both shoulders, costochondritis and some neck pain.
Thanks for all the support and, especially, the referral to a great doctor.
-Mary
Hi Mary,
For what it's worth when I was at my worst I thought I would need multiple joint replacements because of so much inflammation and pain. I literally could not roll over in bed it hurt so bad, but once I noticed it was shifting around like hips one day, shoulders the next, then spine, etc., I felt it was more infection related. Now that the infection is under control with the use of antibiotics and sauna I have very little, almost no joint pain, and when I do there's a legitimate reason for it.
It does sound like your son has a great doctor……..gosh, looking for food allergies, parasites…….things that are not at all uncommon for people that are sick and most doctors don't think to look. :headbang:
Sure hope he's over the worst of it and sees some strong improvements now.
Take care…..kim
Mary,
It's nice to see your update. Dr. Z is amazing at how many triggers she considers!! I didn't know what to expect from her treatment protocols, and now I've decided that she will look under every stone and every crawl space and test the waters!!! Seriously. In the last appointment we were asked to test our water. DH has the Cryptosporidium. The latest trigger we are checking into is mold. Unfortunately, an inspector found a small patch of mold in our crawl space. Neurotoxins be gone!!!
I hope your son feels relief from the joint pain soon! Mine is soooo much better. I still have more pain in the evening…but hours of pain free and little to no pain medicine is remarkably wonderful.
Dr. Z says men are easier to treat than women and your son has youth on his side! May his immune system find victory soon!
Michele
Hi Mary,
just to let you know that you are not alone on this journey. My 18 year old son is B27 poss and we also have a history of AS and reactive arthritis on both sides of our family.
My son was diagnosed with Ankylosing Spondylitis 3 years ago. has food allergies and has been exposed to crypto and yersinia. He is waiting for his first appt with an AP Doc in July. I am very optomistic that he will greatly improve on AP in time and I am eager to get him on the abx. If you need to talk or just compare notes send me a private mail and I will be more than happy to talk.
Take care.
Caroline
Well, the AP/LLMD doctor that we are going to is treating the parasites and the Lyme quite aggressively. He's going to cycle through a series of 4 anti-parasite drugs and at the same time he's going to do IV antibiodics–probably Ivance.
PM me if you want more info.
I will definitely be updating the roadback. We've got our fingers crossed!
Mary
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