Five Holding and One New One to Go

Hi All - Short post today. I debated with myself on posting this here, because I don't want anyone to think I am bragging. I am just excited. So if you don't want to read this, I understand, and welcome you to move on.

I got my lab work back last week and saw my Doc yesterday. Every one of my tests except the CR-P are now in range where they belong, and even things like liver and cholesterol, etc. are further down in the range than they were, and there was nothing wrong with them before, but now they are great. The CR-P was just .3 over range and has dropped 3.2 points since October.

My doc agreed yesterday that I am in remission and said that she thought I had been for six months, but the lab work was just not quite there. She said that I am in remission for both RA and Sjogrens (so that answers Simba's question from before of how I was separating them out). I guess I'm not. ha ha =)

But, the fatigue and widespread pain are still with me. Her diagnosis is Fibromyalgia. Geeeeze!!! I know nothing about that condition except that it mean muscle pain... Sheesh. At least the treatment for that I am already using... Pain control as needed and Flexeril during the night. We are also going to switch to the Doxycycline to see if it makes any difference to the pain or fatigue.

So the score is: Allergies, Asthma, Hypothyroidism, Rheumatoid Arthritis, Sjogrens - 5 under control, and Fibromyalgia - New and not under control.

Blessings on all of us as we each follow our own paths to wellness...

85 Replies

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  • Congrats again!👍🏻If you have FM you really should look into LDN. VERY good results, research going on.😊

  • Hi Simba - I've looked at it several times, and the only concern I have is that this is the USA, and I don't want someone to look at that and decide that I am taking it for an opioid addiction which I don't have. I had never heard of it before this board, and no one in my sphere has ever mentioned it, so I think it must not be a US "normal" even for alternative medicines...

    I guess that brush is not one I want to be stroked with regardless of potential

  • Here is something that might interest you.

    .https://www.healthrising.org/blog/2015/07/15/the-neuroinflammation-man-jarred-younger-on-inflammation-fibromyalgia-and-chronic-fatigue-syndrome/

  • The link didn't attatch Ill try again.

    healthrising.org/blog/2015/...

  • Interesting. He is a brilliant person obviously, and it is good to see the research being done. Still no to LDN though =)

  • 😊

  • Opiate addiction in the USA is in the news lately because Trump's healthcare is omitting coverage for addiction. So since there is so much coverage of the addiction crissis, I understand your fear about people thinking you might have a problem with opiates.

    But they do use LDN in Canada for some autoimmune diseases

    ....And as for people thinking you are an opiate user...who cares?....you are a nice lady and if anyone thinks of you as an opiate user, it's their fault and their loss. Here is a study from Stanford University

    ncbi.nlm.nih.gov/pubmed/233...

  • Thanks for the nice words. It's hard for me to explain, but our healthcare is different here. and the ramifications of having addictions can be far reaching.. So, I will get huddled down with my herbs again and try for another remission if I can =)

  • Most LDN users and perscriping doctors come from the US where research at Penstate and Harward universities are done. More unknown among Europeans.

  • Well hun, if anyone can do it, you can. 5 down & 1 to go...what can I say?..Yipee!!

  • =)

  • Yes the ramifications of having addictions are far reaching and people do talk.

    I went to pick up some needles from my pharmacy last week for my mtx. The person at the counter said

    " You should have enough for 2 more mtx shots" I was stunned. What business is of hers that I bent 2 needles accidently? She then gave me some needles and she then said she needs to "put it on my file"...??? What the heck??

    Vancouver gives out free needles to junkies in the DTE. Infact Vancouver has safe "shoot up stores" with nurses to keep you safe while you shoot up. And I can't get extra needles for mtx, that I pay for? Give me a break.

    cnn.com/2013/04/11/world/am...

  • That's actually nuts... sheesh.. yeah, when I started to do the MTX injections, they "double counted" my needles.. Like what? I'm suddenly going to hit the streets? That is crazy..

  • Yes it is crazy them counting our needles for mtx. Especially here as the government hands them out for free to drug addicts. crazy world

  • Hi CaerylUSA, congratulations!! I'm so happy for you. I want to learn how u did this. It's wonderful.😊

  • Hi Richgirl - Try searching for minocycline in the search box and you will find several discussions including this one from me: healthunlocked.com/nras/pos... that will tell you a lot. Thanks so much for the nice words..

  • Thank you CaerylUSA, I will. Have a great day.😊

  • Hi Caeryl

    I'm really pleased to hear of such progress - I'd be very excited too!

    Long may it continue.

    Marie

  • Thanks Marie

  • Congratulations. Onwards and Upwards. Taking care at the same time. 💃x

  • Yes, for all of us! Thanks so much!

  • Yipee!!! Hip Hip Hooray!! Brag away!!! I'm doing the happy dance for you!!!

    .....Fibro? You'll beat this down too!!!!

  • How sweet are you? As always.. Thank you so much!

  • That's an excellent result, Caeryl!

    I suspect I have fibro. The rheumatologist has neither denied nor confirmed it, just said amitriptyline (which I had just declined) would help if I have. I get the aching muscles and some sleep disturbance, but not fatigue, stiffness, brain fog or any of the other fibro symptoms. But that could be because I take LDN.

    Hope the doxycycline works and brings you full relief. Having declined his offer of anti-depressants, my rheumatologist offered me capsaicin cream - which surprisingly does help. It blocks reception of pain getting from the nerves to the brain. (Google Substance P, a neuropeptide, and pain.)

    There are various LDN forums with lots and lots of US members using it with good results. You wouldn't be the first! (You could always join up and "lurk" to learn more.)

  • Hi Em13 - I take Cayenne every day and that does a lot the same thing only it is internal of course. I might try the lurking thing for a while... Thanks so much

  • Isn't Doxycycline an antibiotic ? I'd ask about B12 as well, as that was my problem Found to have Pernicous Aenemia a simple loading dose changed everthing, Here it's not a common blood test so it might be worth asking about. PE goes with RA and in my case it means a normal life again.

  • There are two antibiotics which are also used for RD ML, well three in effect if you count sulfasalazine which is in part antibiotic. The more commonly used is minocycline but doxycycline is another, both of the tetracycline group. As well as their anti bacterial/anti microbial properties they have a protective effect on the cartilage by affecting the enzymes that cause the damage as well as being anti inflammatory, affecting the cells that cause inflammation. They're usually only considered or recommended if the disease is caught very early & if there's low disease activity where DMARDs aren't really warranted. Often those who start on them progress to DMARDs anyhow so they're not that widely used, plus as they can take as long or longer than as DMARDs to be effective there's the concern that damage can occur in that time.

    Relating it to MTX which has had over 800 clinical trials these antibiotics have only had about 15, I think that's telling.

  • The only thing I would add to your note NMH is that Dr. Thomas McPherson Brown, who discovered this antibiotic therapy treated more than 10,000 people to the point of remission in his lifetime. So, I think that counts too =)

  • Of course Caeryl, I'm not demishing the use of them. We've to remember pre DMARDs there wasn't much an RD inflicted person could be offered, other than pain relief & NSAIDS. When I think how my Nan's was treated, all she had was ibuprofen & a smelly ointment, had she lived that bit longer (she passed away in the early '70's) she may be been treated with antibiotics & had more relief, though of course her already ravaged joints wouldn't have benefited she may have led a less pain ridden life. But this was a time before the first DMARDs as we know them now so Dr Brown should rightly be acknowledged as being at the forefront of treatment in Rheumatology at that time. Only once the disease was better understood were DMARDs developed (we are talking in our lifetime!) though there had been one or two of the ones used nowadays in existence, this understandably led to tetracyclines being used less, there were more effective meds as it had been found early intervention & faster acting meds was key.

  • Hi Nomoreheels - We will agree to just disagree on some of the fine points =) It is too bad though about your grandmother (I presume that is Nan?). I agree, none of the DMARDs can reverse the deformation, but they can stop it so that is great. Have a wonderful day.

  • Unsure how we disagree but hey. Yes, nan was my grandmother. I hope your day is enjoyable too. 🙂

  • I'm just thinking that the MTX and others are really no faster than the antibiotic therapy, at least for some - as we keep saying we are all different =). I went from a year of MTX that really did very little to a year of antibiotic therapy and remission for at least a couple of the diseases. That's all I was really looking at.

    Of course I know that this is not even an option apparently for some folks, for a variety of reasons. I was just hoping to serve as inspiration for people to at least talk with their docs about the possibility.

    Have a great week!

  • The effect of mino, as I have understood is in fact not slower if stopping the progression of the disease is the aim. The fact in this discussion that is always important to remember is that mtx works only in around 50% whereas in AP the effect is seen in over 60%. It should be up to the patient to decide what risks you are willing to take. My rheumy here in France just bluntly told me he was not going to prescribe it because it had been removed from the ULAR recommedations. I think in the US it is still seen as a med for RA ( even though not recommended).

  • I meant EULAR

  • Thanks Simba - I think a lot of the reason for not recommending it is because frankly, it is a cheap drug, and in the US at least Big Pharma rules. Unfortunate, hu?

  • What is also very interesting is the way Pharma has been able to push out Minocycline as a part of the Eular protocol for treating RA. All research that seems to have been done is on RA patients who have been on RA meds for years, and the effect of Minocycline treatment in the few studies that have studied the efficacy of Mino on newly diagnosed RA and the significant positive results are ignored and funding for further research is certainly not funded by Pharma.

  • Medical marijuana is another cost effective option - buy the seeds and grow it yourself. But it is mostly illegal here in the US, even though I have read several studies that indicate it is the oil, not the hallucinogens that make it effective. I would love to see marijuana legalized around the world so people with chronic diseases (like RD and Glaucoma) can get better, and we can send our police after people who are really a threat. I have also seen studies that indicate that it does not turn people into addicts (at least not as much as Opiods probably do..) Ahemmm... Sorry - off of my soap box

  • I think maybe it's not a biggie, DMARDs generally take up to 3 months or more, similarly for tetracyclines, though it's extended as anything up to 6 months but that's not the important thing, it's as long as it works which is more important. Of course there's always wiggle room, it's not beyond the bounds improvement is shown earlier in both. As they were later prescribed for early diagnosed, low disease activity patients plus there was little else else of equal benefit (thinking if it's preferable not to treat aggressively) then it's an acceptable use of them. I'm not sure how often they're prescribed here anymore as initial treatment. I was diagnosed early in another EU country with disease activity in my feet & was prescribed HCQ, plus steroids & 2 NSAIDs to bring down the inflammation.

    Whatever, if they are still in the US then I would think there's need, we've to trust our Rheumys are working in our favour.

    Enjoy the rest of your week Caeryl.

  • You do too nomoreheels. I have to tell you the truth. When I first saw your name, I thought it meant RA had eaten away your heels. I was horrified until the day you talked about no more high heels - ha ha. I think that has changed though yes? And you can wear them now?

  • Ha ha. I can, or rather should, wear wedges & block heels now, not that I'm complaining, though not as high as I once would for fear of toppling over!

  • Hmmm - I may even try my wedges again sometime soon. I know what you mean - When I look at the 4 - 5 inch stilettos I used to wear (every day mind you) to work... Hmmm. But dang - they looked sexy, and in your 20s and 30s that was all that mattered, right? =)

  • At the moment I am using Lidocaine medicated plasters 5% apply one patch to the area that is in pain remove after 12 hours They do help you can also get stronger patched. Your Dr will prescribe them for you.

  • That sounds like a good option too - Thanks Margaret - I usually use Voltaren Gel for spot pains, but options are always welcome!

  • Hello nomorheheels,

    There really is quite a lot of evidence that supports the AP. Minocycline used at the early stages of RA have in fact shown significant efficacy. See research in link. Most studies done on the effect of Mino have been done on patients with longstanding RA who have for years been treated with different toxic meds, this is believed to be the reason for these studies showing only mild efficacy.

    If and when Mino treatment has much less adverse effects and is efficient in the newly diagnosed RA why are patients no longer offered this option? In the above study mtx together with mino in early RA was superior in fact to mtx alone.

    ncbi.nlm.nih.gov/pubmed/164...

  • I do like the conclusion of the 2nd study you posted.

    "The studies with various antibiotics confirm the efficacy of these drugs in the treatment of RA. Therefore, it is possible that the pathogen that causes RA is a microorganism (most likely periodontopathic bacteria)"

    Thanks Simba

  • Yes why are we not allowed to choose are meds when diagnosed, if in fact the mino alternative is cheaper, less toxic and proven to be effective in early RA?

    onlinelibrary.wiley.com/doi...

  • My husband' told his rheumatologist about my issues with my root canals and how my RA is slowly disappearing. He asked my hubby if the same dentist did his root canal. My hubby said yes.

    Needless to say his rheumy stopped his hydroxy and is now prescribing him minocyclone. He also wants him to have his root canal removed or redone.

  • Awesome!!! Yeah - I would have him in there toot sweet to get that tooth redone, or removed if needed. Man, that is so hard... We usually trust our professionals (sometimes more than we should I think), and when that trust is betrayed.. whew.

    Ah Sue, I didn't realize that both of you have RA. Talk about a double edged sword! on one hand he will always understand, on the other, did you really want him to? Probably not..

  • He was diagnosed 2 months after me. Thank God 1 hydroxy a day controls his RA.

    Our doctor was shocked when James was diagnosed shortly after me.

    James seems to have a cycle of flare/remission type of RA that is controled with hydroxy. Me on the other hand got flare/flare/flare with no remission.

  • Good question Simba. I had to go back to my GP to get where I am. If not for her, I would be on MTX and my first or second biologic by now. I might feel pretty good, but maybe not.

  • The sad reality is that there comes a time, even with those where meds are working, when they stop working. This is not the case with Mino. If your RA goes into remission and you stop you medication, you get back your symptoms, you can always return to mino, which seldom works with RA meds.

  • Yeah - We talked about that yesterday and she is more than happy to keep monitoring me as I start to switch over to doxycycline to see if there is anything different. If not, I will start to drop down my doses of the minocycline and stop the doxy since it does have a change of antibiotic induced lupus, but which is reversible if it is stopped. Then I will just lurk her and see if I can help any between the other things I am doing. Take care my friend

  • All the best to you😊👍🏻l will be following your healing process with great interest. Have you talked about your keto diet at the Roadback forum?

  • Hi Simba - I have not. I was waiting to post my story until declared in remission, but wanted to tell this group first.. I really appreciate you guys!

  • I think it's so interesting that you have been on the keto diet. Dr. Brown did also see in his patients that those who had a dietary regime alongside Mino did in fact better, but there was no mention about what kind of diet. I hope I'm not intrusive but could you tell me if you have had any problems with your thyroid before or after RA diagnosis? I am just trying so hard to understand different connections😊

  • Hi Simba - I don't usually tell all of my troubles, but in the interest of understanding the progression of the disease process, here is some of my history (much truncated of course)

    My AI struggles actually started with allergies - I used to take 6 shots a week of various mixes to counteract some of my allergic reactions. Allergies led next to severe asthma at 35. I went to San Diego and got really sick (allergies) and that kicked off the asthma. At 40, I developed endometriosis and had a hysterectomy (it was and still is, the only solution as far as I know). Next I think came the Sjogrens in 1992, but it remained undiagnosed until 2014. Then came the thyroid, then the RA and Sjogrens diagnosis, and now the Fibromyalgia.

    What is strange is that at the time, from the time I was diagnosed with the extreme allergies, I had no knowledge that it was an autoimmune disorder. Had I known at the time, I wonder if I would have been able to prevent some of this nonsense. Ah dang! Hindsight is almost always perfect vision.

    My body has been telling me things for years, but I just assumed either I was unlucky, or it was just "aging". Have a great day!

  • Thank you so much CaerylUSA!! Your story really put my brain spinning. I will get back to you later, have to run now. Here a link to start with about T cells.

    choicesunlimited.ca/when-t1...

    😊

  • I never really thought about it, but YES. allergies are autoimmune too. I'm a claritin pill popper, have been since 2004.

  • I know, right? It's crazy..

  • Hi Caeryl and Happy 🐣,

    Sorry it's taken this long to respond. Yes it's true that we see symptoms and wonder but it is not until recently that functional medicine has started to use new research to understand the symptoms and see their interconnection. Every individual has her own AI story and I am doing a lot of work trying to put together my own😓

    What you told me about your story points at many of the things under research in connection with AI. If you had time to look at the link I sent to you you can understand that your allergies had to do with an imbalance of T1 and T2 cells these immunesystem directing cells should be balanced in normal immunesystem response. In allergies the T2 is overactive. Very often in these situations the estrogen-progesterone balance is off in favor of estrogen which makes the inflammatory situation worse. Endometriosis is a symptom of this imbalance. Your hysterectomy may well have added to the estrogen overload and thus to the inflammation shifting your immuneresponse to T1 and the breaking out of Sjogrens and later RA. Thyroid problems often come in combination with AI. In order for the thyroid to function normally the estrogen-progesterone balance need to be normal.

    I hope I am not confusing you with my evident lack of clairity. What I am trying to say that the players are really many and their interconnection is constantly better understood. You had also a lot of stress in your life that has shown to increase the production of cortisol and the tiering out of the adrenal gland leading to further progesterone deficiency. So here is another connection.

    So what is the connection to the keto diet? On this déficient hormonal level you could think that the fat in fact restores a more normal estrogen- progesterone balance, since fat is needed for progesterone production. Minocykline in turn modifies the immunesystem response by balancing T1 and T2. The antibiotic mechanism of action is still a bit of a riddle to me, like so much else😳

    Sorry for the overlong reply.

  • No worries Simba - Almost all of the replies to this were fairly long =)

    Thanks for the thoughts and suggestions. What described to you was a long time ago, so at this point I have changed too much physically to worry about it personally. However, it may help others.

    Have a great Easter!

  • My intention was perhaps giving more understanding to your individual story and the process of you illness😊

    All the best,

    Simba

  • I'm not saying it's not been used or isn't helpful for some but it's those in the minority who it's been beneficial for, maybe as we've been discussing lately those who's RD was kicked off by a bacterial infection, that would make sense to me. But we must take care & remember that RD isn't just one specific disease so equally, as in my case where it could be genetic minocycline may not work for me. Let's face it the professional's don't know for sure what causes it after tons of money has been thrown into research so we're all still learning from that respect. So, as each patient is diagnosed their likely prognosis is considered & the choice of treatment is decided. I don't believe tetracyclines are considered as first line treatment here in the UK in line with guidelines though. I don't consider the meds I was offered & agree to take to be toxic either. By definition toxic means poisonous, harmful or malicious, my meds aren't any of those to me, quite the contrary to be perfectly honest, they keep me upright & generally very well, unlike when I've not taken them, that wasn't a good experience. Maybe this explains my understanding of why DMARDs are considered to be preferable & why minocycline isn't used as first line treatment for the majority arthritis.org/living-with-a...

  • I think your statement is probably the most important in the world of autoimmune disease. " Let's face it the professional's don't know for sure what causes it after tons of money has been thrown into research so we're all still learning from that respect."

    My only intention for telling everyone about my results is just to let others know that there may be alternatives that they did not necessarily know about =)

    I will just drop it now - ha ha

  • No one knows why we are the unlucky ones to develop RA & No one knows what causes RA.

    I'm starting to believe my dental infection has given me symptoms that looks like RA. My rheumatologist isn't quite ready to say this yet... He says that my RA might look like RA because of my dental infection OR my dental infection might have caused my mild RA to go aggressive. It's been 2 months since I delt with the infection, and yes my RA has calmed down...but my rheumy says it won't be until the end of May or begining of June to say for sure.

  • It was you I was referring to Sue truth be told. Since then I've read of other historical reports where be dental work has been attributed to autoimmune. Let's hope it's found to be the case with you, not too long to wait!

  • Thanks nomoreheels.

    I couldn't live with myself if I dropped out of this group leaving the impression that I was cured. I don't want to give out "false" hope and have some of you guys remove your teeth in hopes of a cure.

    I am very impatient with waiting for May-June, ( but it would be a wonderful birthday gift for myself :) ) I was given the option by my rheumy to stop mtx (12.5mg) because mtx slows down the bone growth...but I was also informed that my RA might rear it's ugly head if dental work was just a coincidence. I don't want that pain again...so I wait.

    Happy Easter!!!

  • So I looked up Dr. Thomas McPherson Brown to see if he was a real doctor or someone who pretended to be.....

    .......boy was I gob smacked when I discovered he attended John Hopkins University School of Medicine.

    He then went on to research at the Rockefeller Institute in New York. He discovered a causal

    l link between rheumatoid arthritis and cell-wall-deficient bacteria, called mycoplasmas.

    Very interesting....

  • I know - he was pretty amazing, yes? And you thought I was following a quack, ha ha.. Just teasing Sue!

  • Hahaha.

    I think RA has many pathogens. Everyones RA is different, genetic, enviromental and possibly an incompetent dentist.

    So if an incompetent dentist placed a crown on a root canal which hadn't been cleaned out,

    then maybe antibiotics are the answer....

  • Yes, or even an incompetent GP, or Rheumy.... There are a million stories in the RA city

  • You're not bragging Caeryl, we're happy for you! Anyone who achieves remission gets a well done in my book. Sorry you've had the Fibromyalgia label stuck on you though, you may find hopping over to the HU Fibro forum helpful, it's another UK based site but they'll be equally welcoming over there I'm sure healthunlocked.com/fibromya... though of course many here can also talk Fibro with you!

  • Thanks - I've been researching this morning, and it really looks like more of the same, but it does answer some questions I still had like why I get so tired-wired at night - I'm exhausted but no matter what I can't sleep, and why I am so sore, but not in my hands or feet anymore - just everywhere else - ha ha

  • CaerylUSA, I hope & pray that you don't need to use this support group anymore....BUT...Please stay intouch with this group we need updates and your valued advice.

  • Thanks so much Sue - I wasn't planning on running away the minute I got better - ha ha. I'm just happy to be helping if possible as opposed to always needing help...

  • I'm so glad for you.

  • Thank you Matilda - It is an exciting time for me, and I wish the same for everyone on the board, whatever path they have chosen

  • So pleased for you, you have also helped yourself with diet and herbal remedies, just hope you will also beat the fibro too. Always good to hear positive news too. Take care, X

  • Thanks Gigi - I hope so too, and the same results for all of us..

  • Very good news regards your fantastic and ongoing excellent results! Long may it continue and I wish you all the best with your diagnosis of fibromyalgia.

    Mx

  • Thanks Mandalou! Hoping the same for all of us

  • Hi yes I agree U.S. is different to ours, you are much more ahead on medication, my Rheumatologist said my test were good last time I saw her but when the weather is damp or wet& cold I am still in terrible pain, people say the weather does not affect it ,I disagree, I only see my Rheumatologist ever 2month she tells me one thing and my doctor or Oncologist tell me different and alter my medication nightmare ,so pleased you condition has improved kinds regards Elizabeth

  • Hi Elizabeth - You are correct of course about the weather, at least for many of us. I got to my worst when my hubby wanted to go out reenacting some military battles and I went with him in November. The cold, wet, rain and wind crippled me for about a week.

    You can always document your symptoms and write down the weather, what you had eaten, what you had been doing, and if there is swelling and inflammation, take some pics to go with your journal. You will be able to start to see if there are correlations, and take it to the docs as well. That works well, or at least has for me...

    Thanks for the nice words, and here is hoping for clarification between all of our providers..

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