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Hello All,
Our 12-year-old daughter has just started the AP protocol 2 weeks ago under the care of Dr. B down South. He did a lot of testing since it has been 3 years since we had her ANA tested. Three years ago the ANA came back 1:320 Centromere Pattern. This recent test came back ANA Centromere Pattern 1:640 AND Speckled Pattern 1:160. Question number 1: Has anyone else had two patterns come back positive?She had 3 days of Clindamycin IV of 300mg and was sent home with M-W-F Azithromycin 250mg. Before getting these test results back the Doc recommended I think about adding Alinia to the mix. Wish it didn’t cost so much. That brings me to Question number 2. Does the generic of Alinia work just as well as the brand?
Any suggestions from fellow patients would be most welcomed. I am wondering if we need to be a bit more aggressive with the protocol if a second pattern has presented. Her symptoms have worsened over the past 8 months but we have just started AP. Now with this new pattern, I’m not sure we if we should be doing more.
Also, her Mycoplasma Antibody came back at 639 which is negative according to the reference range but low positive starts at 770 so it’s really not low enough to rule out these little buggers as being a contributing problem.
Has your daughter been diagnosed with a specific autoimmune disease? My heart goes out to you! Twelve is too young to have to deal with this! I wasn’t ready to deal with it at 44! Good for you that you are being proactive in starting AP. Exactly how long now has she been on AP? What medicines, if any, was she on the past three years? I know someone else with more experience with ANA will chime in soon. I did not develop an ANA until I started AP. But it has always been just at the borderline of 1:40. I will say it does change. I would have to go back and look but it seems like it has been speckled as well as homogenous I think. However, not both at the same time. Probably what I would want to do but I know with constraints of insurance it may be impossible, would be to have her ANA tested at another lab and see how it compares. I am glad you have found a knowledgeable AP doctor. Please keep us posted.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFThank you Spiffy1! The AP meds we just started 10 days ago for the first time. Although we had the positive ANA 3 years ago, Centromere 320, we were focused on treating her Small Intestinal Bacterial Overgrowth, and H. Pylori. We were advised by our Functional Medicine Doctor to not think too much about that one positive ANA and focus on getting her gut healthy. I know now that the reason she wasn’t able to resolve her SIBO and H. Pylori even after 3 years of aggressive treatment both Conventional and Alternative is that her Scleroderma was and is slowing down her digestive tract. While trying to resolve her H. Pylori and SIBO (AND WE FINALLY DID) we had her on Conventional Antibiotics and Alternative Antimicrobials. I wonder if this helped keep her Mycoplasma symptoms at bay, even just a little bit. The ANA test we did two weeks ago was from a different lab than our first test 3 years ago. This time her autoimmune response doubled and she is at Centromere of 640 and as I mentioned earlier the new Speckled pattern showed up at 160. We don’t use insurance hardly at all. We have gone Conventional at DUKE and Chapel Hill but have been woefully disappointed. Conventional Doctors are good for many things but in my experience AutoImmune isn’t one of them. So we are free, as long as the wallet and home equity allows, to take our daughter anywhere and to anyone that can help her and that is what we have done. I know with our AP approach, using a blend of conventional antibiotics and holistic gut healing, she will get better.
Hello Peachy! A few years ago we did the Western Blot. It came back negative. At the time I did not know that it wasn’t the most reliable test to do. I just went along with it and convinced myself she doesn’t have Lyme. Now, after reading much on this website I see we should use IGENEX or another more reliable test. My husband has Psoriatic Arthritis and I’m convinced his co-infection is Lyme. He was raised in Pennsylvania Country and regularly picked ticks off of himself throughout his life there. We are city people now and we don’t camp BUT we are originally from Pennsylvania and my Mother in Law was diagnosed with Lyme a few years ago. They have a large property in the country, the same one my husband was raised on, with deer and bear and that got me to thinking about how every summer we would go up and the kids would roam around the property to play. So maybe Lyme isn’t out of the question. Her ASO came back negative so I think that rules out Strep. As I mentioned Mycoplasma is present in substantial number. I’m new to all of this so my question is if Mycoplasma means Lyme?
I have speckled pattern too! Just recently had my doctor test it again. I’m at ANA 1:640 speckled homogenous pattern. From my understanding mycoplasma is a very stealthy bacteria that we are all exposed to at some point in our lives except some of are more suscepitble for it triggering our immune systems, especially if our immune systems are already quite low. Thats what happened to me. I was travelling for work at a young age, first time away from home, not really ready to be out there on my own. I guess over the course of the month my immune system really got hit. I came home, got really sick (for like 2 weeks), at the end of all that I found both my knees super swollen. It all started from there. Mycoplasma loves joints and they also love confusing the immune system! It also feeds off the host, not producing its own nutrients, hence all the vitamin defeciencies, etc. Thats my understanding of it! PM me if need be 🙂
I always hesitate to bring up diet because it is such a personal choice. But I have studied non stop for four years the health affects of food sensitivities. With your husband having psoriatic arthritis and your daughter having these issues I can almost flat out guess they carry the DR4 HLA pattern which can easily be tested. It is an unfortunate one to have and is often coupled with a celiac gene such as the DQ8. If she were my daughter I would have her food sensitivities tested before making any dietary changes. Then I would try an elimination diet of no gluten and no dairy for at least 6 months to see if she felt different and/or her lab values would change. Many people on this site say food is not a trigger for them. However, it can take five years to totally detox from gluten alone. So when a patient says that foods are not an issue for them but yet they are still not on top of his or her disease I want to say “”Well, how do you know it is not an issue? You are still having issues!” I can only speak from my experience and I am here to tell you that my Titanic did not begin to turn around until after my diet change. I had been on doxycycline 200 milligrams everyday for three months before switching to a pulsed dose minocyclene but it wasn’t until my diet change that things really started to improve. Please do not try a diet change for three weeks and say it didn’t help. Decades of eating offending foods can take longer than three weeks to start any type of repairing. Ask you doctor about IGG food sensitivity testing. Pick a company you trust and see what her intolerances look like. I know it can be extremely difficult with younger children to help them avoid certain foods. I only have one gluten eater in the house and she is 15. But if she were to develop any other signs of anything besides her eczema I would have to be more serious about it. I am watching her like a hawk because I see what a diet change has done for me. Anyway, I have rambled on too far. But I would also check her for MTHFR mutations and get her on methylfolate and methyl B 12 under a doctor’s supervision. Anyway, please keep us posted on her journey. We are pulling for your family all the way back to health.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFYour thoughts are much appreciated Spiffy1! I wholeheartedly agree that diet is probably one of the most important things you can do to change your health but also the hardest. We have all been Gluten Free for 4 years and our daughter has been Dairy free for the better part of 3 years. She has had many test done but I’ll look into the one you mentioned since I’m not familiar with that one. She does have both Celiac genes and so does my husband. My son and I have one each. Before I had thyroid cancer, I had Hashimoto’s so Gluten and Dariy were a no, no for me. My Mother in Law has Crohns so we just went GF when we realized our genes, especially our daughter’s weren’t in her favor for Gluten. We are very strict about no Gluten. Even our spices are GF. I have no gluten in the house at all, not even body products or makeup. And that yummy but inflammatory Dairy! Oh how food is our nemesis!! We’ve all had food allergy testing done and avoid the mid to high offenders. Makes cooking around here ridiculous because we have some things in common but my son is highly allergic to ANY and all nuts so there goes the wonderful Almond Flour recipes for all. I still use Almond flour but I always have to make something else for him. I usually have at least 2 differnt meals going on any given day. I try to keep our base the same but with the food allergies/sensitivities AND the GERD triggers our daugher has it’s difficult to keep it the same and not get boring. Our daughter doesn’t have eczema but our son does. Just recently our daughter has developed these hard spots around her middle knuckle on each hand. I would guess it’s a Scleroderma issue. No cream, even my homemade shea/jojoba oil creams make it go away. Her reflux is horrific but I have hope that once she is on the AP this will greatly improve. Her acid reflux and stomach pain were her first symptom at age 8 and for 4 years have continued. I believe it’s the auto immune damaging the digestive tract because we have tried so many diets and restrictions. Just a few have been, a year on the Specific Carbohydrate Diet, six months on Low Fod Map, and sugar free for another year. Of course we are always Gluten free so that goes without saying. Dairy restriction have been in place more often than not over the last 4 years but I would say that is the hardest one to give up. Right now she is strict dairy free. During these past 4 years she even did 2 Elemental diets under doctor supervision each 2.5 weeks long. This was to get rid of her SIBO. It means NO eating, only drinking a predigested vitamin drink originally created for patients that can’t eat. It didn’t work because she had extremely high H. Pylori numbers at the time. Once we got rid of the H. Pylori we were able to get rid of the SIBO. Now being on Antibiotics regularly she will never have to worry about the SIBO again. I give her VSL #3 and Strengthia probiotics now that she’s on AP. The SIBO and H. Pylori is what led us to finding out she had auto immunity going on to begin with. It’s been a LONG road but I think we have finally arrived to the solution (AP).
Well, I was preaching to the choir on that one! You have definitely done the food thing! My heavens! You are a trooper. It is difficult to say the least when everyone is eating something different. Around here it is hard to come up with new and delicious ideas that are gluten, dairy, egg, and cashew free. Yes, the celiac gene opens up a lot of cans of worms. However, most people with these genes never know they have them. But then there is the rest of us that get the trigger pulled on them and then we have to deal with autoimmunity. Have you also considered LDN? I am a big believer in that as well. I also have my minocyclene compounded due to being allergic to the fillers in the generic. Anyway, it sounds like you are going to be a valuable person on this website due to your diligence and knowledge. I am thankful you are all gluten free. This is a huge benefit. I have found dairy…for me…has been easy to give up because there are so many replacements but I am not as picky as a younger person. It is egg I wish I could get back if only for baking purposes. Anyway, check on MTHFR status and LDN.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFIt’s folks like you Spiffy1 that are what makes this website such a valuable resource! Just the encouragement I’ve gotten from yourself and others like Cheryl has been just what I needed to continue forward in this very complicated web of rheumatic autoimmune. I took LDN myself for a short time to see if it would help with my Hashimoto’s but I didn’t feel a difference and my antibodies stayed the same. Now that you mention it, I wonder if it would be good for our daughter and my husband to try at some point. I do worry about her liver and kidneys processing too much at once since this protocol is for the long haul and her albumin is up but I’ll do my homework and see if it might be what we need to add to the mix. I can’t wait until my husband can see the AP Doc and start on his healing journey. It’s one day at a time around here. A husband with Psoriatic Arthritis, A Mom with Cancer and a kid with Scleroderma/MCTD. We’re the new portrait of the American Family!! I type this with a chuckle but it is so sad that this is where we are now that our environment, food/water/air have become so toxic. Looking forward to learning lots more from you seasoned Road Backers and to living the best life possible with this auto immune!
Oh, Mountains! Sometimes we are put in a spot that there is no place to go but to succeed. So let’s do this! My thoughts are definitely with you and I hope that you are also able to take care of you in all this.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHas anyone had luck with getting their primary doctor or rheumatologist to order food sensitivity testing? I have asked both and neither would order them for me so the cost would be out of pocket (I have no idea how much it would cost). I assume this is normally the case or has anyone had a different experience?
Kelly S,
Unfortunately, we have always had to pay allergy test out of pocket. The price varies. Of course, the better test like Cyrex cost more but you can also get a test done at Anytime labs (if you have them in your location) with no Doctor prescription for about $100. That test will not be as comprehensive as the Cyrex but you will at least get an idea of what are your big offenders if you have them.
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