Feeling lousy & needing advice!

[laurawm]

Hi all,

I’ve posted a couple of times here but am really still quite new to all of this. I was diagnosed with RA around Christmas time and am now on Sulfasalazine and minocycline. After starting the SSZ, but before starting the mino, I began some natural antibiotic treatments (bovine colostrum) which seemed to induce an intense flu like feverish herx for over a week, and then started the mino, and while still having some variable herxing, have generally been feeling much better (I was pretty bad off in the beginning, with joint damage already visible on x-rays, unable to walk or use my arms and hands). -Until this past week and weekend. We went out of town and I cheated on my gluten free/dairy free diet (even though tests say I do not have any food allergies…) and had two pieces of pizza and a brownie and ate nuts several times (I’ve been avoiding nuts due to high arginine content that I’ve read the bugs love). Maybe the food has nothing to do with it, but aside from the stress of traveling with small children, this is all that I can think that was different. Anyhow, yesterday and today I have had a return of major swelling/pain in my right foot, knee, and shoulder and one knuckle. This has been bad, but the worst is the almost drugged (I guess I am drugged, oh well) fatigue. I feel like I can hardly hold my head up or keep my eyes open. I have a dull headache throughout my head and honestly I feel discouraged. I know this isn’t a straight road to recovery, but of course I was hoping I might be the exception. 🙂 I also get very dizzy from the mino, and it seems to be more acute when I am generally feeling worse. I read that the dizziness happens because the mino can get through the blood brain barrier and into the inner ear – I wonder if I feel more dizzy when there is die off in that area, or if this side effect is completely unrelated to the disease?

Ahh! I just want to be able to erase this disease from my life. I am trying to be positive and still live and love and enjoy my children and work, but it is so difficult to focus on anything else, especially when I am feeling so terrible. I have a rheumatologist appointment in two weeks and I’m not sure what to ask for. I am essentially self-treating, as he is not supportive of AP therapy, though he was willing to write the mino script. Do I need to get off sulfasalazine? Although no one seems to agree on whether it is actually immunosuppressive, my understanding is that any antibiotic taken everyday (which SSZ is part antibiotic) is immunosuppressive in the sense that it is working to control infection where your immune system would otherwise – which is why it is suggested to take mino in low pulsed doses?

So, I do not have just one question, but a host of fears and uncertainties about what is best to do and what is going on with me. Feedback in any area is much appreciated! I find reading through different threads so comforting and encouraging and appreciate the time each of you take in posting responses.

Laura

[lynnie_sydney]

Hi Laura – does sound like you are herxing big time……..it is often several weeks (different with everyone) before any symptoms start in that regard. The flu-like symtoms and pains jumping around are definitely typical of this – and they do pass.

What was the reason doc put you on sulfasalazine as well as mino? Sounds like he/she may be rxing the mino to placate you and is really expecting the sufasalazine to work cos that’s a pretty big dose. Also, that is a sulfa drug -do you know if you have any issues with those? Lots of people do. My understanding is that it’s part immuno-suppressive and part antibiotic. I had good results with it many years ago – but it takes a minimum of 3 months before any changes are noticed. See quote from my Personal History thread:

She (my AP Doc) wasn’t surprised with my good results from sulfasalazine because of its antibiotic properties but said that the amino salicylic acid portion of it may have done me more harm than good and she was pleased I had taken myself off it.
viewtopic.php?f=3&t=371

Incidentally, tests for allergies will not tell you if you have food sensitivities. Most holistic docs say that all people with chronic disease have some form of Leaky Gut. And if you noticed the difference as soon as you went off your gluten-free /dairy free diet, then that would point to some dietary intolerances and, if it were me, I’d go right back on the stricter regime.

Also, if it were me (and with doc’s approval, of course! 😉 ) I’d be looking at cutting back on the mino to start with and then working up to the 100mg MWF. Herxing should nrver be completely debilitating. You also want to drink plenty of water to help flush toxins from the body and perhaps use a couple of other detox methods also.

And, if it were me, I’d be asking my doc if I could lower the amount of SSZ, with the view to coming off it within a few months, as soon as my symptoms had subsided………but that is a very personal opinion/choice. You need to decide what is best for you, in consultation with your doc

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)

[laurawm]

Thanks Lynnie for your response. I just wrote a very long reply and it seems to have disappeared during the time I went and put my little boy to bed. Basically, my doc put me on SSZ because I was still nursing my baby girl and during that time I began researching antibiotic treatment. The doc told me the people at the road back were “quacks” and that he didn’t think mino would help me, “You already have joint damage!” but he was willing to write the script. So, here I am.

I tried to cut back on the SSZ a couple of weeks ago for several days, but did have more pain during that time, so I went back up to the regular dose (which is not even the full dose the doc prescribed) since I do not want to be foolish and have more joint damage. My concern is that I cannot truly get better if my immune system is suppressed or I have drugs doing all the work for my system all the time. I wish it was all more staight forward. I do have an appointment with a different family doctor recommended to me by the road back shortly after my next rheumy appointment, so I am hopeful that I will gain some kind of support and direction at that point.

I did make a lemon/coconut oil drink last night and have felt better on all fronts most of today, but I took my normal colostrum dose early today with the intent of taking the mino tonight, but I have felt more pain and dizziness in the past few hours (which makes me think some of my issues could also be with still herxing from the colostrum) so I am going to wait to take another mino till tomorrow or Friday.

I am back on my diet – it’s difficult to know what to eat as it is limiting to take out all gluten and dairy. I am losing weight, but managing. I needed to lose about 15lbs. from pregnancy, and now I only have about five left. I am going to have to figure out some way to maintain my weight once I get to that point.

Thanks again.

[Rosemary Perth Aust.]

Laura it is so hard when you have small children as well. I feel for you. Ester C which is a Vit C powder is wonderful for herxing. Difficult also when you have a Doc who feels the way they do about road back treatment. 100mg. of Min is a lot. I could never have started on 100mg. Often when people do the pain is horrific. better to start slow and work your way into it. especially when you have to keep on your feet with little ones. I am wondering although many do have the dizziness from mino whether it could be something else. have you been tested for Lyme? If not I would get it done to be sure as I had shocking dizziness with the Lyme and still do if I touch anything with sugar in it. Sugar is downright dangerous, especially if you have an infection. Do hope you feel better soon.

[laurawm]

Thanks so much, Rosemary – I’ll look for the ester C. Yes, I did have a Western Blot Lyme test done (at my request) and it came back negative. I know I still may have Lyme, as there are so many strains and the tests not all that accurate apparently – but I do not know how to test further. I am also seropositive RF factor and anti-ccp (I hope I’m saying this all correctly, it is still all new to me). I first noticed symptoms during my pregnancy with my hips and feet, but just contributed it to perhaps extreme pregnancy side effects, but still just pregnancy. After having my baby girl last spring, I did have a virulent stomach/intestinal attack in the middle of the night and then continued intestinal pain/diarrhea for another 2-3 weeks. As soon as I was up and about trying to live life again, I noticed my foot and hip pain had not gone away, but was getting worse. I kept contributing it to pregnancy (this was a big mistake, as this is how I ended up with damage in both feet) until it went systemic and took over my shoulders and hands as well this past fall. During pregnancy I had a very large, red (but no bull’s eye) red mark on one leg that I woke up with one morning but have no memory of being bitten by anything. I’ve traveled in much of the third world and throughout eastern and western europe, so of course I could’ve picked something up during one of those trips. I have history of a chronic cough and intestinal pain as well as problems with my knees (which I have always blamed on running injured in college). I also had chronic strep as a teen and my tonsils removed and about 10 dental fillings in my 20’s (no root canals, no mercury fillings). I suppose I may never know exactly, but these are the red flags that come to mind as I research all the different RA causality theories. As for sugar, it does seem to be directly related to my pain. It may be that sugar is the real dietary issue, and not gluten or dairy. I guess I’ll figure it out over time. For now, I’ll just keep eating my salads with grilled chicken and carrots and apples for snacks. At least I’m getting back in shape. 🙂 Thanks again.

[Krys]

Hi Laura,

I always pay for dietary mistakes, especially a few in a row. Some foods cause bigger issues than others. All starches and sugar play a big role. And the funny thing is I only started the diet to speed up the healing process (I thought I had RA, it fit perfectly), I had not seen prior to introducing the diet any connection between food and symptoms.

Did you do your Western Blot test through IGeneX? I only tested positive on bands 31, 34 and 41 (I think I had one or 2 “indicative”, not positive) and officially I was “negative” even through IGeneX. On non-IGeneX Western Blot I would have tested completely negative, as bands 31 and 34 which are highly specific for borreliosis, had been removed from those tests and therefore cannot show up! I had 73 out of 75 symptoms as per: http://www.endowmentmed.org/pdf/updatelyme.pdf but the test result was still negative. As tests are notoriously unreliable, Lyme is a clinical diagnosis even according to CDC!

Did you ask for the hard copies of the test? If read by a doc not familiar with Lyme, the “IND” by highly important bands will be ignored and they will only go by the general “Negative”.
I also developed a picture perfect bullseye while asleep during the night, with no tick attached. It usually happens while already on abx in chronic Lyme. With me it was after a truckload of antimicrobial herbs and right after herbs for lymphatic cleansing. As the body works differently during the pregnancy, maybe after a bout of diarrhea, your body was highly sensitized to keep any infection at bay and sensed the presence of Borrelia microbes, as bullseye rash (doesn’t have to be “picture perfect”) always = Lyme!!!

As it is not the bacteria or microbes themselves, but rather their toxins and the patient’s reaction to bacterial toxins, that cause the symptoms, intense detox could greatly help you feel better.
If you are up to doing a coffee enema, you may feel all better within 20 minutes! Sometimes, when the toxic load is very high, another coffee enema is advised the very next day to notice marked improvement.
This is the fastest route to feeling better, but any intense detox will be very helpful.
If I do some daily detox on a daily basis and keep my diet, I feel really good (the laziest detox is taking toxin binders orally, doing glutathione push or taking liposomal /therasomal glutathione, ImmunoPro, detox baths/ foot soaks, lemon olive oil drink, FIR sauna, etc.).
You may find many thread devoted to detox, coffee enemas, FIR sauna, lemon/olive oil drink, Lyme tests and bands if you search within the search window above the main page of General Discussion.

I hope you feel better soon. Warm wishes, Krys

[laurawm]

Hi Krys, thanks for the response. I do not know exactly what/how my Lyme test was performed. I requested it of my regular internal medicine doctor and it was processed through LabCorp. It says “Lyme Ab/Western Blot Reflex IgG/IgM Ab <0.91" which indicates negative according to the test.

I’ve read a lot of good science behind coffee enemas and am very interested, though I must say I need to research how to perform this as it seems it requires some “equipment” and background knowledge 🙂 .

The past couple of days I’ve had some variable joint pains, but still the overarching complaint is fatigue and dizziness. I think I’m going to give myself Wednesday off of the mino and see if this helps at all – it should at least let me know how much of the dizziness is from the drug itself (or how my body metabolizes the drug).

On a separate but related dietary note, I ordered several books from Amazon on RA “cures” and one is touting the natural antibiotic properties of coconut oil and that at 4Tbs. taken internally spread throughout the day can be as effective as antibiotic treatment… I do believe coconut oil is helpful as I can tell it helps with flares topically and when I do add it to detox teas, I end up coughing up phlegm for awhile after (this cough seems to tell me things about treatments). Funny thing is my major hesitation in adding this much coconut oil to my diet is I don’t want the calories – so vain. I think I’ll try it for awhile at least. Another book (I’m in that – I’ll read anything and everything that may help – stage) has a very detailed plan for figuring out food sensitivities beginning with juice/broth fasting and then slowly adding in new foods one at a time. I may try some version of this in a couple of weeks, and will post if I find out anything interesting.

Thanks so much for your thoughts – I do need to detox more – I have so little free time to do such things, much less learn about it all, but I must to get through this. Lately I just end up sleeping! So tired. On that note, I’m off to bed. 🙂

[Rosemary Perth Aust.]

Laura I know how you feel about wanting a proper diagnosis. It makes all the difference with anyone treating you so dont give up on that one.
Thing is if you are on certain drugs it will not show. supps are the same. You need to be off everything supps & antibiotic drugs I was told, for a week which most of us cannot do. If you can do that then go to a different lab it would be worth it. If you cant then best to find an LLiterate Doc near you who could help you. That might be a good idea. Whether you have it or not as they will also realise the other bacteria that can cause problems as well & would be receptive to your abx treatment.. Mine was done again recently at a lab here and did not show because of all the drugs I am on. Its difficult but dont give up. Your health depends on it.

[Krys]

@laurawm wrote:

… it was processed through LabCorp. It says “Lyme Ab/Western Blot Reflex IgG/IgM Ab <0.91" which indicates negative according to the test.

LabCorp’s test does not include bands 31 and 34. The first doc that prescribed the test for me, insisted on the one through LabCorp, saying that it is the most reliable one. I called LabCorp’s and asked them to contact the company doing the test and check if they tested for those bands. It turned out that those particular bands were not tested for, so I refused to do the test.
If you can search through Maz’ posts (or just write “IGeneX test” or “bands 31, 34” in the search window above General Discussion) you will find lots of posts in which Maz explains why IGeneX test is the most reliable, why those bands have been removed and how to proceed to have the IGeneX test done.
You can also call IGeneX and they will explain how long one should be off abx.
I was off abx for only 10 days (I took 2 rounds of Bactrim for infected bullseye, the one that had no tick inside) but there are people on RBF who did the test while on abx and tested positive. Lyme is primarily a clinical diagnosis, tests can only confirm it, but the negative test does not mean one is not infected if the symptoms are present. Borrelia is very immuno suppressive and the sickest people may not produce enough antigen to test positive even without any prior abx! Maybe Maz will see your post and give her always great advice?

I’ve read a lot of good science behind coffee enemas and am very interested, though I must say I need to research how to perform this as it seems it requires some “equipment” and background knowledge 🙂 .

Again, lots of info on past threads on RBF.
viewtopic.php?f=1&t=6655&p=57799&hilit=coffeeenema
viewtopic.php?f=1&t=6187&p=54918&hilit=coffee+enema#p54914 Read on, I quote further on Dr. Jernigan’s recipe for coffee enema. Even if you do not have any toxin binders (Chelated Molybdenum, Chlorella, Charcoal, etc), you will reap great benefit from doing just plain coffee enema. If my liver had not been so lazy in producing bile, I would do coffee enemas 2x a week. I keep thinking that a good gallbladder flush would help me out on that one, but I have not done it yet. I do it every few weeks, or whenever I feel very toxic, and I always feel wonderful later and vow to do it more often!
It is worthwhile searching RBF and reading more than the 2 links above.

the overarching complaint is fatigue and dizziness. I think I’m going to give myself Wednesday off of the mino and see if this helps at all – it should at least let me know how much of the dizziness is from the drug itself (or how my body metabolizes the drug).

Many people experience dizziness on Mino and it usually gets better in time. A day or 2 off sounds like a good idea! I experienced dizziness only during my first month on doxy. Again, search within RBF! You will feel better knowing you are not alone and maybe will find some useful info.

…the natural antibiotic properties of coconut oil and that at 4Tbs. taken internally spread throughout the day can be as effective as antibiotic treatment…

Coconut oil can punch quite a herx! Maybe start with much less and build up?
A thread on coconut oil: viewtopic.php?f=1&t=6862&p=59100&hilit=coconut+oil

Another book… has a very detailed plan for figuring out food sensitivities beginning with juice/broth fasting and then slowly adding in new foods one at a time. I may try some version of this in a couple of weeks, and will post if I find out anything interesting.

Finding your particular food sensitivities will greatly help you feel better. Keep my fingers crossed that all goes smoothly and that you feel better soon, Krys

[lynnie_sydney]

Krys – coconut oil seems particularly beneficial for those with SD and similar. However, I’d be cautious about it as an RA patient if I’d been on NSAIDS for any length of time or if I thought/knew I had sensitivity to salicylates. It is extremely high in salicylates and, in some cases, the herx could actually be a resulting flare.

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)

[Krys]

@lynnie_sydney wrote:

Krys – coconut oil seems particularly beneficial for those with SD and similar. However, I’d be cautious about it as an RA patient if I’d been on NSAIDS for any length of time or if I thought/knew I had sensitivity to salicylates. It is extremely high in salicylates and, in some cases, the herx could actually be a resulting flare.

Thank you, Lynnie. I would have never guessed!
Does it mean that if one is NOT sensitive to salicylates, there will be no herx reaction?
I have no idea if I am sensitive or not. I never take any NSAIDs. I always controlled inflammation and pain with Curcumin, Cayenne Pepper, Bromelain, Ginger, cinnamon, garlic, etc. And it worked well for me.
I had quite intense pain deep within the bones (felt like bone marrow pain) and within cartilage in all the joints after ingestion of coconut oil. It had most wonderful effect on my brain! As I cannot stand the taste of coconut oil (I love coconut milk and coconut flakes), I keep postponing eating it. I use it only as body lotion and for oil pulling. I’ll find out what else contains salicylates and will be watchful.
Thank you for the tip!
Warm wishes, Krys

[lynnie_sydney]

Thank you, Lynnie. I would have never guessed!
Does it mean that if one is NOT sensitive to salicylates, there will be no herx reaction?

Not sure whether it works both ways Krys. Mostly because I’m not sure why there would be a herx respopnse from coconut oil.

Salicylates are a difficult one……….there is no conventional test for sensitivity. It’s a trial and error necessity to test. Sensitivity is on the increase because of several things: supermarket practices (cold storage rapid ripening) increase the salicylate content of fruit andf veg exponentially, plus the contemporary fashion of adding fragrances to everything (they are all salicylate-based). We’re literally bombarded with them. Take a look at the Sue Dengate info I’ve posted several times if it piques your interest. Otherwise just use your (wise) judgment. Just thought I’d mention it because I’ve got a sensitivity (tested via a VEGA machine) and now have (amongst other things) a low salicylate diet – and I’ve never been on regular NSAIDS either. Those that have a sensitivity can have rheumatic reactions. So guess was just saying to be cautious. Once again it’s the one-size-doesnt-fit-all rule, cos I know those with SD and related issues have great results with it.

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)

[Krys]

@lynnie_sydney wrote:

I’m not sure why there would be a herx respopnse from coconut oil.

Hi Lynnie,
Coconut oil has antimicrobial properties.
http://www.coconut-oil-central.com/antimicrobial.html
“Both MCFAs (Medium Chain Fatty Acids) and their monoglycerides exhibit potent antimicrobial actions”. They disintegrate the lipid layer of the microbial membrane, thus killing them. “Even bacteria that have become antibiotic-resistant
is destroyed.”

http://www.westonaprice.org/know-your-fats/new-look-at-coconut-oil under “V. Coconut Oil Antimicrobial Benefits”:
“The lauric acid in coconut oil is used by the body to make the same disease-fighting fatty acid derivative monolaurin that babies make from lauric acid that they get from their mothers=milk. The monoglyceride monolaurin is the substance that keeps infants from getting viral or bacterial or protozoal infections….Recognition of the antimicrobial activity of the monoglyceride of lauric acid (monolaurin) has been reported since 1966. ….
The action attributed to monolaurin is that of solubilizing the lipids and phospholipids in the envelope of the virus causing the disintegration of the virus envelope. In effect, it is reported that the fatty acids and monoglycerides produce their killing/inactivating effect by lysing the (lipid bilayer) plasma membrane. However, there is evidence from recent studies that one antimicrobial effect is related to its interference with signal transduction (Projan at al 1994).”

Pubmed only has one article “In vitro antimicrobial properties of coconut oin on candida species in Ibadan, Nigeria.” http://www.ncbi.nlm.nih.gov/pubmed/17651080

@lynnie_sydney wrote:

Salicylates are a difficult one……….there is no conventional test for sensitivity. It’s a trial and error necessity to test. Sensitivity is on the increase because of several things: supermarket practices (cold storage rapid ripening) increase the salicylate content of fruit andf veg exponentially, plus the contemporary fashion of adding fragrances to everything (they are all salicylate-based). We’re literally bombarded with them. Take a look at the Sue Dengate info I’ve posted several times if it piques your interest. Otherwise just use your (wise) judgment. Just thought I’d mention it because I’ve got a sensitivity (tested via a VEGA machine) and now have (amongst other things) a low salicylate diet – and I’ve never been on regular NSAIDS either. Those that have a sensitivity can have rheumatic reactions. So guess was just saying to be cautious. Once again it’s the one-size-doesnt-fit-all rule, cos I know those with SD and related issues have great results with it. [/color]

Thank you for the warning, Lynnie! How I wish it could be one-size-fits-all! 😆
I’ll do some more research and will check Sue Denegate info.
I will certainly check for salicylates and if I pass, and all the herxes are over, I’ll slowly rekindle my coconut affair! Your post has made me do some additional reading on coconut and now it is even more attractive. The taste sucks.

LAURA, I think I’m starting to know how you feel. I’ve restarted abx and today herx hit me and it is like what you described, minus intense pain. My old herxes were more pain related. The present one is like a nasty flu: dizzeness and nausea, exhaustion, some pain. It’s totally yucky! Dizziness from doxy was easier to take.
Detox is certainly in order. I have not celebrated Easter with a coffee enema yet! 😆

Warm wishes, Krys

[laurawm]

Hi Krys, Rosemary & Lynnie 😀 Sorry to be so slow to respond, but two kids ages one and three, plus a million other things (like life and RA 🙄 ) leave me with next to no free time. Krys, I’m sorry to hear you’ve joined the dizzy club – it’s very annoying to constantly feel like you are in motion – hopefully it will calm down soon and ultimately leave you feeling better.

If I could write a title for how I am feeling right now, it would be: “STILL DIZZY!” What is going on inside of me? The dizziness started at the end of my first major herx after being on colostrum (known to precipitate a healing reaction and still, I believe, the best treatment I am continuing) for a little over a week. The herx involved a fever and incredible fire like joint pain followed by sequential releasing and reduction in swelling in each of my joints where I was having problems. Then one of my ears began to hurt intensely – an ear infection. It was the day that the ear infection was the worst that I began minocycline. I took three 100mg capsules over 36 hours and the next morning I was so dizzy I was having trouble doing normal tasks like pouring liquids and walking stairs (but not because of my joints this time!). Well, that was the first time I posted here because I felt like I was losing it. From there my ear pain got better and I started doing the mino pulsed MWF. I still had some dizziness, but there were days where it felt almost gone. And now the past couple of weeks here I am still dizzy (though less so than earlier in the week), except now I have not taken the mino in four days. So, I either do not metabolize minocycline well and it is still stirring around in my system making me dizzy, or the dizziness is part of ongoing inner ear infectious involvement in my disease and the dizziness is part of a herx. The latter seems more probable to me at this point, because I am beginning to notice that the colostrum and possibly also coconut oil taken internally can bring the dizziness on – though to a lesser degree than the minocycline. I just don’t understand why I never felt dizzy before beginning the mino, but I also have to think about the ear infection and the possibility that whatever infection is in me may have decided to camp out in my inner ear for the time being following the known ear infection. Part of me is concerned that I should not be taking minocycline if indeed the dizziness is related only to the drug, as it would mean that I am not clearing it out of my system well and might be susceptible to DIL? Ah! I know I am turning all of this over in my head to the nth degree, but I just want to get better! Thanks for all your thoughts.

Oh, and I’ve started coconut oil a couple Tbs. a day since I’m giving the mino a break. My joints feel pretty good, not perfect, but after being nearly completely disabled, a few transient aches seem tolerable (though I do still have a bakers cyst on the back of one knee 🙁 ).

Lastly, one of the books I’m reading recommends the Alcat test to learn your food sensitivities – does anyone know anything about this? It is expensive.

[DragonSlayer]

Hi, Laura:

You certainly have AS and should probably be tested for HLA B27 antigen.

It is not gliadin that is the problem; it is all starches.
Carol Sinclair’s book “The New IBS Low-Starch Diet” has the explanation in the foreword by Professor Ebringer.

Combination of her diet (we call NSD-No Starch Diet) and some different antibiotics and You will not look back.

Consider whether You have the morning stiffness and if suffering long enough X-ray changes to SI Joints. In AS the pain is highly cyclic (at first), asymmetrical, moves around, and sometimes accompanied by IBS (that was Carol’s primary problem but she never got the permanent skeletal damage because she figured things out and has avoided complications of AS; she is B27 positive, and her father was quite hunched over from it).

The peak age of onset in men is 17-23 or so and for women it is skewed high by about eight years, and symptom progression is much more random than in men, also. My mother never knew she had it and died from complications of AS plus her terrible lifestyle choices (mostly smoking but also drinking…and eating too many starches).

Good Luck with it, and if You want to use my protocol (AP for AS) as a guideline, You are welcome to it,

John

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