Need help in course of action

[Jonathan99]

hey all

a little background. I am a 35 years old, healthy and active.

2 months ago I started to have very mild joint aches/warmth at my hands/feet/knees. I spoke to a family doctor friend who had me take blood tests for RA, they all came out negative and normal. but now about 1 and half months later the joint issue is still there and it does seem like some kind of RA. (seronegative I suppose)

I took up a super healthy diet, removed gluten/dairy/sugars and I do feel better but perhaps only about 40% better.

I was lucky enough to find the AP way and I want to start taking antibiotics asap. luckily it’s possible to buy antibiotics here in Thailand without a prescription. although they do not have minocycline here, but I did bought doxycycline 100 mg.

there is no option for me to see any doctor here so have to figure out things by myself.

since I am still in the very early stage and have very mild symptoms, what’s my best course of action?

should I just follow the protocol of taking doxycycline 100 mg – once daily, Monday, Wednesday and Friday?

thanks in advance for any help!

[Maz]

Hi Jonathon,

Glad you found us and hope your decision to choose AP treatment works well for you. We are all just patient volunteers and fellow patients on this forum, so unable to offer medical advice. However, that said, your decision to start the therapy with 100mg Doxy on M-W-F mirrors what Dr. Brown would have done for early mild RA (and later minocycline was used) and is the basic protocol that can be tweaked as time goes on. If you can, read and re-read all the literature on this site and in the Henry Scammell book, because it will help answer many of your early questions and provide confidence. It can be unnerving to swim upstream and is a slow therapy where the long-term improvement trend is what we all keep our focus on.

One thing that might be pertinent to your situation is that a lot of people who are seronegative for RA actually later discover they have a form of reactive arthritis. E.g., Reiter’s, ankylosing spondylitis, or psoriatic arthritis. So, determining if one of these may be at the root of one’s symptoms can be helpful in terms of adjusting diet (usually no starches or nightshades as these can feed some of the bugs), but also the AP that is followed. This is because there can be very different bugs at the root of these rheumatic types that may respond to different antibiotics or various combinations of antibiotics. Also, if you can have labs run, it get the HLA B27 genetic haplotype test, because it can help in diagnosis of seronegative reactive arthritides. Suggest researching these rheumatic types to see if the description of symptoms ring any bells.

How do your inflammatory markers look? I.e., elevated CRP or SED rate?

[Jonathan99]

Thank you Maz for your kind reply.

I did the following blood tests: ANA, RF, ESR , AND and blood count and they all came out in the normal range.

It’s interesting that you saying that it might be some form of reactive arthritis, I did googled those and I am not sure if I can relate to the symptoms as my one and only symptoms is the joint issue and many of those cases also effect other things like the urinary system, etc.

also, I mentioned at my first post I did changed my diet and I do see about 50% improvement 2 months later. maybe that perhaps indicate it’s food related? could that be a thing?
perhaps I being impatient going the AP route and should give the diet (mainly eliminating gluten/dairy) more time? or is it wise to start AP as early as possible in order to see a chance of remission in the case it’s not entirely food related?
is it fair to say I have nothing to lose going the AP path in any case?

[Maz]

Jonathan99 wrote:

Thank you Maz for your kind reply.

I did the following blood tests: ANA, RF, ESR , AND and blood count and they all came out in the normal range.

Thanks for sharing this with us, Jonathon. It is worth re-running these labs down the track as sometimes, in early cases, these can return positive. This is because in early disease these markers don’t always show up immediately. This is not to say they will! Just that it is worth re-checking in, say, a year, if symptoms persist.

It’s interesting that you saying that it might be some form of reactive arthritis, I did googled those and I am not sure if I can relate to the symptoms as my one and only symptoms is the joint issue and many of those cases also effect other things like the urinary system, etc.

There are so many infections that can precipitate reactive arthritides, some microbes of which originate in the gut or lungs, for instance. E.g., e-coli or klebsiella pneumoniae or chlamydia pneumoniae. In other words, different infections can trigger the rheumatoid process (and there are plenty more, like shigella, salmonella, staph, campylobacter, Yersinia enterocolitica, H. pylori). I was pretty surprised to find I had, at some point in my life, had had two types of walking pneumoniae – Mycoplasma pneumoniae and Chlamydia pneumoniae.

There is also a form of palindromic RA (arthritis that hops around with extreme bouts of pain) that is mostly seronegative and begins as an infection in the gut, called Tropheryma whipplei, the causative micro-organism of Whipple’s disease. So, it may be worth your while researching this sort of thing, if you have a history of gut issues, pneumonia or even strep. Mycoplasma fermentens and Lyme disease can also trigger palindromic RA.

As a first step, though, it is helpful to get the HLA B27 test run, because so many people do get told they had seronegative RA, but later have found it was a reactive arthritis. This difference may be helpful in terms of treatment approach later. If you find doxy helps rather quickly, however, it may be a moot point.

also, I mentioned at my first post I did changed my diet and I do see about 50% improvement 2 months later. maybe that perhaps indicate it’s food related? could that be a thing?

It can very much be a thing for anyone with rheumatic diseases, because in many cases, rheumatics suffer from “leaky gut.” The gut accounts for about 70% of immune function and, if healthy, is a barrier to microbes (that help to digest food or may be ingested) and food proteins. When the tight junctions of the gut are breached (causing micro-perforations) due to inflammation in the gut (sometimes due to infection, pain meds, or poor diet, for instance), this leads to foreign proteins leaking out into the bloodstream where they shouldn’t be. This sets up an immune attack and if some foreign proteins look like and mimic human tissue proteins, these tissues become the target and collateral damage of the immune attack. People with reactive arthritides also find that certain foods (e.g. starches or nightshades) will exacerbate symptoms. My MIL had PsA and had to avoid potatoes and tomatoes like the plaque as she wound up with sausage fingers just hours after eating them. One theory (and it makes good sense) is that certain gut microbes feed on these foods and this expands the offending microbe colonies, leading to gut inflammation. Some experts also state that candida overgrowth (from the vicious cycle of high cortisol due to stress or other hormonal shifts, leading to excessive consumption of sugars in the diet that feed the candida) can also lead to the micro-perforations as they grow tubules into the gut lining. So many things can lead to leaky gut, not forgetting environmental toxins, like pesticides sprayed on foods that disturb micro-colony equilibrium and lead to overgrowths of not-so-good microbes. So, the upside of careful diet is that it starves off the bad guys and encourages healthy ones.

perhaps I being impatient going the AP route and should give the diet (mainly eliminating gluten/dairy) more time? or is it wise to start AP as early as possible in order to see a chance of remission in the case it’s not entirely food related? is it fair to say I have nothing to lose going the AP path in any case?

Well, this is a decision that only you can make, Jonathon, after reading all the resources on this site and the Henry Scammell book. Getting as educated as one can be about the therapy, in advance, can help a lot in making an informed decision about treatment. AP is not a treatment for the faint-of-heart – it requires quite a bit of patience as there are rarely any overnight sensations.

What treatments did your rheumatologist offer you? If meds were offered, then the doc may think you are severe enough to warrant treatment?

[Cheryl F]

As Maz said, we aren’t doctors, but we are very much self starters so I will say, hooray! If you read the book, Rheumatoid Arthritis, the Infection Connectiom, penned by one of the Foundation’s Directors, you will learn that when faced with a refusal for an RX of the antibiotic, she headed to her local Feed Store to but tetracycline in bulk and then put it into capsules. She took those and started getting better, which then convinced her doc to write the RX. We cannot condon this method but I will admit, I admire the can do attitude. I myself, having access to walk across the Southern California border have availed myself of OTC antibiotics from time to time. Where there’s a will there’s a way! Good luck!

Cheryl

[jasregadoo]

Maz, pathetic question here…you mention giving up nightshades. I’m not sure I want to live in a world without tomatoes and eggplant and peppers. So, my question is, do you know…does one have to give it up forever to be effective? Or could you possibly give up nightshades for a year or so to let it clear from you system?

I have a friend who’s husband has gout, and he is OK MOST of the time, if she makes their bread at home and uses organic flour, but sometimes has a flare where he has to go completely gluten free. He pretty much lives on meat and vegetables until he clears up.

What do you think?

[jasregadoo]

Maz, pathetic question here…you mention giving up nightshades. I’m not sure I want to live in a world without tomatoes and eggplant and peppers. So, my question is, do you know…does one have to give it up forever to be effective? Or could you possibly give up nightshades for a year or so to let it clear from you system?

I have a friend whose husband has gout, and he is OK MOST of the time, if she makes their bread at home and uses organic flour, but sometimes has a flare where he has to go completely gluten free. He pretty much lives on meat and vegetables until he clears up.

What do you think?

[Spiffy1]

I would answer you by saying that if you know you have HLA B27 you should seriously consider giving up nightshades for life. Even if you are not positive, it is worth a trial period and then upon re introduction you can evaluate eating them in the future. I myself am practically living off potatoes and tomato sauce! Like you, I would find my already restrictive diet even smaller. There again, I wake up with itchy palms that have small red dots that go away fairly quickly sometimes in the mornings. I always wonder if it is something I am eating or just my weird self. Who knows? Maybe I should give up nightshades😃

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, minoMWF

[Maz]

jasregadoo wrote:

Maz, pathetic question here…you mention giving up nightshades. I’m not sure I want to live in a world without tomatoes and eggplant and peppers. So, my question is, do you know…does one have to give it up forever to be effective? Or could you possibly give up nightshades for a year or so to let it clear from you system?

What do you think?

Gosh – no question is ever pathetic! This is a great question and I’ve thought about it, too. Although I am not an expert in diet, I think it’s fair to say that if someone has an intolerance to a certain food (rather than true allergy as in celiacs being unable to eat gluten for life), then once the gut lining is restored that reintroducing foods one at a time to test the waters is feasible (like your friend). If repeatedly reactive, though, it’s likely better to just stay off a particular food. Some folks (I think Dragonslayer was able to do this) have shared that they’ve been successful reintroducing foods and others not, so my guess is that there is no hard and fast rule. Another rule of thumb is that it’s important to check for hidden sources of whatever a person is intolerant to. E.g. potato starch might be added to processed foods and to stay off the food for a good few months to rid the body of whatever foreign protein is potentially causing inflammation. This is one reason why eating like a caveman works for some people – basically avoiding processed foods and only eating fresh, organic foods.

Elimination diets are a simple way to ascertain what works or not for each person if food intolerance testing isn’t run.

The kickas website likely has some good tidbits of info on all this, as well.

My MIL sometimes cheated and would eat French Fries or have a tomato spaghetti sauce and, without fail, she’d suffer for it. However, she also lived on strong pain killers and mtx that didn’t allow her gut to really heal.

[Spiffy1]

Has anyone tried the styrofoam diet? Ha! Just a little humor thrown in! Who else misses the days when you simply ate because it tasted good and you could order everything off the menu! Seriously, I had the Cyrex Array 10 done and it pointed me to several foods. I realized they all had one thing in common. They were all high in histamine. I do think my MTHFR keeps me from breaking down histamine and may be one reason for my continued rashes. There are several allergy tests out there. ALCAT is another. Quest and Labcorp. have their own, too. You might study them and pick one and see what it says. I think I am ready to start over and do it again. I was surprised that a friend of mine said her son’s friend had to be tested for food allergies along with his family before they could get new health insurance. This is the wave of the future of personalized medicine.

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, minoMWF

[Jonathan99]

Thank you everyone for taking the time to reply.

@Maz, wow I wished I could buy you a cup of coffee or something, what a fantastic in-depth reply. can’t thank you enough.

What treatments did your rheumatologist offer you? If meds were offered, then the doc may think you are severe enough to warrant treatment?

I am currently living in Thailand with no health insurance and getting an appointment with rheumatologist can be very difficult. I did went to the hospital at the beginning of the joint pain, they sent me to a neurologist who said it is too early to determine anything, she did ran all kind of different blood tests (vitamin deficiency, glucose levels, etc) and they all came out at normal range.

my pain is not that bad, I can describe it as mostly uncomfortable, and I really don’t want to start taking at this point the standard arthritis treatments. so I guess I am being my own doctor at this point and skipping the rheumatologist thing (also I am fairly confident the rheumatologist will not be pro AP as a treatment)

I have started yesterday taking the doxycycline 100 mg, I decided that I will take a bit more of an aggressive approach to start off of taking 100mg twice a daily, then I will probably reduce it. from my past I know I can tolerate antibiotic’s fairly well.

I will update with any results

@spiffy1 , I know exactly what you mean about “the normal menu”. it’s only been about 2 months since I started eating super clean, stoped eating at restaurants all together, and when I walk in the supermarket and looking at all the stuff I can’t eat any more I become very nostalgic… remembering the good old days I could just eat whatever I want without giving it a second thought. funny how life can change so quickly 🙂

[Spiffy1]

Yes, I used to feel so sorry for those people with food allergies. I was so glad that I did not have that problem. Wow, does life have a way of spreading things around or what? I did read an article that was very interesting. It was about a young man that wanted nothing else than to go to the US Naval Academy but he could not get in because he was allergic to shellfish. His mom had heard about someone that was schizophrenic that was allergic to peanuts when one personality was present and was not allergic when the other personality was present. So she consulted a hypnotist that dealt with food allergies and to make a long story short he was able to give up his allergy and join the academy through sessions with the hypnotist. Personally I found it most interesting. There is actually someone in Dallas who does this but I am not quite brave enough to try it. I might would come out worse than I went in knowing me.

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, minoMWF

[Jonathan99]

@spiffy1 , thanks for sharing that story, it’s interesting about the mind – body connection.

I think the worst part for me is the paranoia about what kind of food will cause inflammation and what not. there are so many different views and opinions about whats food is optimal for RA. I recently discovered the carnivore diet, when you basically just eat meat/fish and drink water. I joined some of their facebook groups and searched for “joints” and “RA” and founds tons of stories of people getting rid of joint pains/ putting their RA into remission eating this way. I know in the end of the day it’s just a very simple elimination diet but I was sure red meat can cause inflammation so I was surprised and kind of tempted to give this thing a go.

[Pinkmoth]

… remembering the good old days I could just eat whatever I want without giving it a second thought.

Altering the diet in the way that we’ve had to is definitely challenging and frustrating. Sometimes when I get real down about this, I try to remember that maybe in the long term, we will be healthier in some ways than our peers who are allowed the luxury to eat garbage.
Like a lot of people, I really used to consume too much sugar, and didnt eat a lot of vegetables. Even though it’s a “forced” change not being able to eat a cinnabon (I want that cinnabon!!!) it’s for the better – we would probably be real sick in 20 years even if we didnt have rheumatic disease if we’d never course-corrected our diets

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Cheryl F]

While I do agree that a healthy diet is ALWAYS the best way to go, when I first had the need to join this forum, and look for the experiences of others, I was told by several that Jess “MUST” avoid this or that. Well, she was 16 at the time and a diet change would have been a Herculean feat and I wasn’t going to make her sacrifice anything unless it was necessary. She started with 3 days of the IV clindy, then started oral minocin, then about 6 months later we started a combo antibiotic protocol. She never made changes to her VERY SAD (standard American diet) which included (I am not proud to say, almost daily Taco Bell, frequent Panda Express, and occasional Jack in the box breakfast. On this diet she fully recovered. My point is, the diet may be key to many, but not all. Everyone needs to forge their own path. Don’t kill your self on a restrictive diet if it won’t make a diffence in your health. However, I think if you have half a brain you will know that daily Taco Bell ain’t good for anyone. As she is now an adult those bad habit are far behind her, she splurge on Taco Bell maybe twice a year.

Cheryl

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