Posted By: jay_bharat Fibromyalgia - 12/27/17 01:58 PM

Anyone have Fibro. What are the symptoms, is that resembles AS's. Whether it is diagnosed before or after the diagnosis of AS. What treatment is being taken.

Posted By: AnitaC Re: Fibromyalgia - 12/27/17 07:54 PM
I was dx with fibromyalgia about 18 years ago. The first time I had trouble we were actually camping. We were medical Foster parents and had a baby with us that was really drug affected. Lots of holding/consoling, I woke up one morning unable to get up. My back locked up and I couldn’t quite walk. My legs were rubbery, didn’t work right etc. it went on for about a week. Tried prednisone but couldn’t tolerate it. I ended up going to a rheumatologist who dx the fibro. So mostly tender, sore muscles in my back. Major sleep issues. Couldn’t get comfortable, everything hurt. Lots of aching in my joints. The worst symptoms would come and go. Episodes I suppose. I just accepted it. Lots of ibuprofen and trying to find a way to lessen the pain. I went gluten free for a long while and I do feel it really helped. I also was given Cymbalta and it really knocked the pain down. I’ve probably been dealing with AS stuff for a long time. I’m just all blends together in my opinion. It wasn’t until I had bilateral sciatica that I got tested and for the gene. It was positive and I had a maternal relative that had it quite severely. He was a male tho so that’s why my rheumy calls it spondylopathy? Idk....I’m not sure any of this will help you, I feel it’s all a melding of the same stuff??
Posted By: Robin_H Re: Fibromyalgia - 12/28/17 02:07 AM
Hi Jay:

If my memory is correct then it was about a year after a flood that happened in around 1992 that I began to experience non-restorative sleep correlated with a back ache between my shoulder blades. I also felt like my blood was burning and joints hurt. I had fatigue and brain fog. I was experiencing something like anxiety with mild toxicity. I was also getting GI pains.

My doctor checked my ESR which I thought was strange since I believed that arthritis was for old people. I was abut 23 or 24 y.o. at the time. The doctor sent me to neurologists and a GI doctor then finally labeled me with fibromyalgia.

Many diseases have symptoms and sign overlap. And I feel that each one of those diseases has multiple causes depending on a person's genetics. So spondylopathy symptoms are diverse in each person and the causes are probably varied. A specific combination of triggers (microbial, heavy metal, etc) are likely causing different diseases in different people.

I read research articles on CFS, fibromyalgia (FM), mould toxicity, AS, etc and critical reviews of those findings. It seems that there is a battle of egos going on. For example, someone that has spent 25 years researching FM and says that two dopamine producing regions of the brain are consistently undersized in FM sufferers wont like another researcher that takes 100 FM patients and finds that 90 of them have high levels of micotoxins in them, even years after being in a wet, mouldy building. Doctors can not only be overly skeptical but down right "small"!

What I believe my early symptoms may have been, which I still have at even greater intensity, were mould illness symptoms. I suspect that I was colonized by mould after the flood and that has kept my immune system busy and suppressed all these 27 years since the flood. Mould illness is probably a misnomer for multi-microbial illness. Mould is always there but it has a large variety of thugs hanging with it.

That suppression creates opportunity for microbes that are considered common and innocuous to have an effect by them selves and synergystically in biofilms. As we get older the number of unwanted guests gets bigger. They probably are the primary cause of not aging gracefully.

A nasty partner in crime was introduced in to my head in 2013 during a scuba incident. That pain promoted me to over use NSAIDs which seemed to allow more good and bad bugs to escape from my gut and into my body. Once I realized that it was the NSAIDs that were opening the door to illness I ceased using them and continually got better for a year.

After that year it has been a down hill journey for the past two and a half years. The only thing that slows the pace is no sugar, NSD, supplementing with Mg, selenium, probiotics, vit-D, etc.

Using NSD and supplements is like constantly trying to bail water out of a boat that has holes in it. Gotta fix the holes and in my case that is to reduce the toxin and microbe overload. I am adverse to blindly treat myself without knowing what my targets are -- gram positive or negative bacteria, protozoa, amoeba, fungus, etc -- and what kind for bullets and firing pattern to use; i.e. what kind of antibiotics and dosage patterns.

I think that I had back pain between the shoulder blades because I was getting most of the micotoxins from the air at that time. When I had the scuba diving accident at age 45 I then developed inflammation in the cervical spine. Finally, after ruining my gut with NSAIDs I started to get inflammation in the sacrum for the first time and every other part of my body at high intensity. It seems that areas of spine inflammation are close to areas of high immune system activity.

What I am trying to emphasize in all my words is that I suspect most chronic illnesses are caused by undiagnised chronic infection.

I hope that helps.
Posted By: jay_bharat Re: Fibromyalgia - 12/28/17 05:55 AM
Thank you for the details provided.

You have mentioned

I went gluten free for a long while and I do feel it really helped.

Can you elaborate. What are the foods you have avoided. I went on strict NSD for a year, which has not given any relief. My understanding is that diet helps for AS and RA. You have mentioned glutten free, I should search.

Posted By: jay_bharat Re: Fibromyalgia - 12/28/17 06:02 AM
Hi Robin_H,

Thank you a very detailed reply.

You are mentioning bacteria / virus can be the source of some of these issues. Can infection prolong for many years. During the last 14 years, I had ups and downs with several treatment I have taken. I am still wondering, how anti TNF gave me relief when I do not have inflammation. I think anti TNF will not work for fibro.

What specialist you are consulting and what treatment you are taking.

Posted By: AnitaC Re: Fibromyalgia - 12/28/17 06:59 AM
Hi Jay,
So I’ve always had digestive problems and at one point had endometriosis. I got so tired of always being bloated and uncomfortable and thought my issues would resolve with a partial hysterectomy. It did help in many ways but not really for digestion. After testing for Crohn’s and Celiac I decided to try gluten free. I eliminated all gluten: bread, crackers, oatmeal, etc. I ate some rice, I ate pizza just made it with gf mixes for crust etc. mostly I ate vegetables and protein. Very limited fruit as I’m fructose intolerant. I felt immensely better but I can’t recall how long it took. It wasn’t a quick transition in some ways. The boating stuff resolved super fast but the joint aching and muscle burning gradually improved. I felt a lot better physically.
The hard part for me has been feeding the family food they want and me not eating the stuff with gluten myself. I don’t have much resolve when I’m in this much pain so I kinda gave up on it lately. Then it makes me feel worse. Ugh! I hate food sometimes I swear!! I’m not sure if it’s even the gluten as much as maybe all the crap sprayed on the wheat to begin with?? Idk
Posted By: Robin_H Re: Fibromyalgia - 12/28/17 09:12 AM
Hi Jay:

Sure you can have chronic, low level infections. Even your friendly microbes that are with you your whole life can give you trouble at different times in your life.

Many people harbour mycobacteria and they do no harm until something else runs down the immune system. I think Morgellon's disease is an example and possibly shows up years after a person had lyme disease.

As to anti-TNF's working on fibro... well, the anti-TNF's may have been working on something else. I recall you saying that you were on anti-TNF's but they were not doing anything for you. So it doesn't sound like you have some arthritis or chrons.

As to Fibro, CFS, and other yuppy flues, I don't know how separated they are. Doctors are still trying to understand the physiology and define diagnostic criteria. They all have much symptom overlap (and even some clinical signs) and I am sure that they are frequently used as diagnosis when doctors give up. We may find that some are really the same illness but just express themselves differently due to genetics.

I really think modeling black holes is much easier than solving medical problems.

Posted By: Anonymous Re: Fibromyalgia - 12/28/17 11:01 AM
Originally Posted By Robin_H

I really think modeling black holes is much easier than solving medical problems.

Yes and probably more rewarding!
Posted By: jay_bharat Re: Fibromyalgia - 12/29/17 06:16 AM
Hi AnitaC,

Sorry to note the re occurance of problem. I think, if something works, it is better to stick with that regimen. We do not appear to have much choices. May you can go back to your old food which made you comfortable.

I do not have significant bloating issues. But certainly I used to have bloating immediately after lunch, whenever I was away, with outside foods. I do not know whether it is related to fibro.

Posted By: jay_bharat Re: Fibromyalgia - 12/29/17 06:27 AM
Hi Robin_H,

I will keep in mind the point on low level infections. May be when I visit a GP sometime, I will discuss with him.

Anti TNF gave a big relief from my flare in 2007, but it never brought me to normal life. It slowly weaned off.

I consulted two rheumies recently both mentioned no issues with bone and muscle after seeing all my reports - 14 years. They have not pin pointed the underlying problem. I really had severe flare in 2003 and 2007 forcing me to bed for several months. To find an answer, I consulted pain specialist who prescribed for fibro. I still have no answer, why anti TNF gave relief in 2007.

Posted By: Anonymous Re: Fibromyalgia - 12/29/17 09:47 AM

I still have no answer, why anti TNF gave relief in 2007.


I think it was about 2007 or therabout that I first started on Anti-TNF(Enbrel). The relief it gave me was immediate and complete. So why on Earth did it's positive effects were off gradually but completely by 2016?
Posted By: jay_bharat Re: Fibromyalgia - 12/30/17 04:11 AM
Posted By: jay_bharat Re: Fibromyalgia - 01/03/18 04:34 AM
Hi Frederick,

I got confused from your post, since I also started enbrel in 2007.

So you started with enbrel in 2007 and the effect went off in 2016?. Did you try another biological afterwards. Sometimes another one will work. Enbrel did not give relief after 3 months for me in 2007 and I started remicade in 2008, which gave considerable relief and not effective from mid 2016.

Posted By: Anonymous Re: Fibromyalgia - 01/03/18 11:10 AM
Originally Posted By jay_bharat

So you started with enbrel in 2007 and the effect went off in 2016?. Did you try another biological afterwards.

My intention was to get the rheumatologist to prescribe me a different Anti-TNF to replace the Enbrel. I was admitted to the rheumatology ward for assessment and tests along with intensive physiotherapy and hydrotherapy.

However as I had an infected abscess close to my anus it was decided to deal with that first. So I was referred to another doctor who would usually deal with such things. He however persuaded me that surgery of that sort was unnecessary at this time. He does however want a biopsy done of the abses and I expect this to be done any day soon now the Christmas holiday is coming to an end.

It so happens that my condition has rather improved and I am doing much better than I expected without the Enbrel. So I now await a routine rheumatology outpatient appointment probably within the next month or so. I will see how i am by then and talk about it with the rheumatologist.

I rather think I may benefit from bing on less medication even if only as a trial. With the usual A.S. medications such as NSAIDs. and strong pain killers plus other drugs to treat my nerve pain (neuropathy) it is a lot of medication for anyone to be on long term.
Posted By: jay_bharat Re: Fibromyalgia - 01/04/18 01:28 PM
I am doing much better than I expected without the Enbrel

Is that mean enbrel is working?. Or what made a sudden slump?.

Posted By: Janclebro Re: Fibromyalgia - 01/04/18 04:30 PM
Hi Jay, I too have fibromyalgia as part of my diagnosis. I found that the NSD was not the whole story for me, though it helped. I get a lot of muscular pain accompanied by fatigue and exhaustion, and severe insomnia. NSD is effective in starving bacteria in the bowel, but more than this might be required if SIBO or candida is a factor, which I believe is often the case with fibromyalgia. I've eventually realised I have to cut out sugar and yeast as well, resulting in an extremely restrictive but most rewarding diet. I also had a blood test to detect food sensitivities, and this provided another piece of the puzzle in resolving my pain problems. I supplement with mega-doses of probiotics and take antimicrobials. I still have occasional dips but have made phenomenal progress. Hope this helps and good luck Jay - Jane
Posted By: Robin_H Re: Fibromyalgia - 01/05/18 03:00 AM
Hello Jane:

I was also "labeled" with firbromyaliga about 25 years ago. I hardly think that it is a "diagnosis" but it is real and not a psychological illness.

I strongly feel that most chronic illness are caused by persistent stealth infections and can be halted and even reversed depending on how much damage has occurred if only the offending invaders can be removed. NDS essentially just lowers microbial activity.

Are you aware of and what do you think of Garth L. Nicolson's insistence that chronic illness syndromes, and many other disease, are caused by multi-species microbial infections? He's no quack!

I strongly feel that the insomnia is cause by hormonal disruption due to the infections; not just neurotransmitters as doctors simply think and tend to only treat. Same for the pain (infections in all soft tissues: nerves, muscle, collagen, etc), fatigue due to us using so much energy to combat and repair the damage the microbes cause.

Dr Nicolson says that the mitochondria have excessive oxidative damage from mycoplama bacteria in FM and CFS patients and that consuming healthy fats help repair mitochondria and our cells. This is part of the same treatment approach that doctors that treat mould illness use. Also, long ago researchers in fibromyalgia and other chronic illness syndromes concluded that the mitochondria are not functioning correctly.

May I know what antimicrobials you use?
Posted By: jay_bharat Re: Fibromyalgia - 01/06/18 04:26 AM
Hi Janclebro,

Thank you for the details.

I did strict NSD for a year without any results. I did DNA food intolerance test also. I did blood culture test which was normal. I have not done test for SIBO. Presently I underwent ayurvedic massage and also taking LYRICA. Observing the results.

Posted By: Sue22 Re: Fibromyalgia - 01/06/18 03:05 PM
"they" tried to stick me with that label, but no, I don't have it...thankfully.

I did consider it seriously, but was able to rule it out, because I really didn't have any of the symptoms beyond chronic pain and tenderness at the joints, which for me is enthesitis.

on the other hand:

I have GI inflammation, joint inflammation, mild psoriasis, dry eyes, erythema nodosum (during bad flares in the past) and I flare...all consistent with a spondyloarthropathy, but not with fibro.

And since methylpred, Aleve, and Humira work, that pretty much confirms an inflammatory arthritis.

But Humira isn't perfect, sometimes it lasts about 1.5 weeks, sometimes 1 week, sometimes only a day or two (that is rare)...I have it prescribed for every 7 days and typically average about every 10 days, but sometimes I do take it on day 7 or 8. Yes, the biologic works for me, but it isn't perfect, but a lot better than without it.

Also, where the damage is done like my neck, that's always a problem...Humira just makes it a bit better, but my face is always somewhat numb, and I must sleep in a recliner, and haven't been able to find a new car, all due to nerves being compressed, in my neck, due to the damage, due to the spondyloarthropathy.

Posted By: jay_bharat Re: Fibromyalgia - 01/09/18 05:39 AM
Hi Sue,

In my case also, though pain doctor mentioned it is not fibro, he has given medicine for fibro. All the parameters are normal and MRI is not showing any sacroilitis. Hence probably, he may be suspecting fibro. I have to review after 10 days.

Posted By: Janclebro Re: Fibromyalgia - 01/09/18 06:16 AM
Hi Kevin, thank you for that interesting information on Nicholson. I'm focusing on consuming healthy fats - I have a little virgin coconut oil every day, and fairly copious amounts of extra virgin olive oil on my large green salads. (And a bit of fatty pork belly now and then is very satisfying, though I guess I couldn't call that a healthy fat!)

I agree with you about NSD only reducing bacterial activity - it seems it takes a lot more to kill them off and the NSD doesn't seem to achieve that. I'm wishing to start a course of antibiotics and medical antifungals and am busy contemplating my options on which doctor to approach for help with this. I believe it'll need good supervision. In my case I believe that the NSD has not only reduced the activity of the bad bacteria, but also the good, leaving me vulnerable to a yeast overgrowth which is what has now happened (confirmed by stool analysis). I pour probiotics into myself and while they help with day-to-day symptoms, they're failing to take hold and multiply (also confirmed by the stool analysis) and I believe my NSD (and possibly the antimicrobials) is responsible for this.

I suspect that the pathogenic bacteria that were originally found in my gut and that are no longer showing, are probably still around, but have possibly migrated to my small intestine in search of sustenance. While NSD would work for starving bacteria in the bowel, it seems reasonable to assume it would not be sufficient for bacteria in the small intestine, where bacteria would have ready access to sugar. This might explain why I originally did so well on the NSD, and have now had to remove sugar from my diet as well. It might also explain why so many report failure on NSD.

The main antimicrobial I've used is oregano oil. I've had access through a local laboratory to a particularly good brand. I've also used Berbemycin for a couple of months. At present I'm trying to introduce some variety as the strain of Candida I'm fighting (Candida Glabrata) is hard to beat and builds up resistance to antifungals. So I've tried Candibactin-AR from Metagenics and garlic oil. Nothing seems to have the potency of the oregano oil so I keep reverting to it. I've been prescribed several others but they all seem starchy and cause me pain - the most effective of these was sage leaf extract which seemed to be working but increased my pain levels. Oils seem a safe way to go.

I think you're right about the insomnia being hormone related, though I feel in my case that it's also very much connected to gut activity. My insomnia is slowly improving though I have a long way to go. In 2016 I seldom slept longer than 45 minutes in one stretch, and three hours was a particularly good night. I sometimes didn't sleep at all. Now I mostly sleep four hours in a stretch, occasionally up to six for the night,and I've had a couple of nights where I slept longer than that.

I think that's all! Best wishes - Jane

Posted By: Janclebro Re: Fibromyalgia - 01/09/18 06:24 AM
Hi Jay, essentially if you have bloating starting about half an hour after eating, when your food is starting to enter your small intestine, then it is likely that you have an overgrowth of some pathogen in your small intestine that is welcoming the food supply. It could be fungal or bacterial.

Regarding whether you have AS or fibro, I find there are a lot of overlaps between the two, but there are a few distinctions. My rheumatologist told me that pain focused in the shoulder girdle is more likely to be fibro. I also find that my fibro symptoms include a lot of muscular fatigue/ pain/ weakness, which doesn't seem typical of AS (although sometimes muscular pain is easy to confuse with enthesitis until you get the hang of it). A fibro diagnosis also seems to require insomnia as a factor, and headaches and mood issues are common. That's quite apart from the tender points, but these seem to come and go with me! This is a non-medical opinion but I hope it helps - Jane
Posted By: Robin_H Re: Fibromyalgia - 01/09/18 07:00 AM
Out of desperation I took six days of amoxicillin for the infections that I have had in my head and other places since August 2013. I was actually given eight days worth but I was developing strept throat like symptoms and lots of mucous build up. How ironic since people take amoxcillian to actually cure such symptoms!!

It seems to have made much of my body worse, did no good and also gave me a lot of gas. I guess the fungus and other microbes that are resistant to amoxcillian have increased in numbers.

So, back to the cloves, garlic, ginger, star anise (for flavour), cinnamon, black seed oil, etc. They may not be as powerful as penicillin but they are less likely to blow you off balance.

I find that the right amount of exercise really is great for boosting immunity too.
Posted By: Robin_H Re: Fibromyalgia - 01/09/18 07:40 AM
Hi All:

Perhaps frequent massages with essential oils would be beneficial for getting healing compounds into the body instead of just relying on pills. This bypasses the stomach and liver and gets the compounds into our blood with less processing or stress on those organs.

I have large doubts that any doctor is willing to prescribe antimicrobial if we are not in a state of acute illness where there is obvious puss that isn't going to go away. Generally low threat pathogens in immunocompetent individuals are a slow growing annoyance which is very difficult to control/reduce; just one little slip up or long-term stressor and they grow exponentially.

Another oil I just ordered is black seed oil. I know someone with Morgellons disease and she says it works the best of all things that she has tried in year.

To aid the antimicrobials I have ordered the chelating agent EDTA to break down biofilms; not exactly safe to use but what really is when a doctor prescribes a pill?? I have read that a biofilm disruptors make some antibiotics work on stubborn infections with antibiotic doses between 100x to 1000x smaller than what doctors have used in the past. It is now understood that it is biofilms that are the reason why antibiotics work poorly in a large proportion of chronic infections or why people relapse after being cured by antibiotics.

I don't know why doctors still have not developed protocols that go something as follows: use antimicrobials with nutritional support for the liver, kidneys and other organs and with biofilm disruptors, then follow up with large doses of probiotics. Conventional medicine only does one of four of those items. No wonder some people struggle to get better, or have organ damage from excessively high doses of antibiotics and antifungals, and then just get reinfected because of the microbes that sequester themselves in biofims and then repopulate the empty spaces if no probiotics were quickly provided.

Other good biofilm disruptors are eating raw lemons or drinking unsweetened, freshly squeezed lemons. And of course a mixture of enzymes.

BTW Jane, have you had your Candida genetically tested? Mine was tested using the PCR method at Genova Labs and the strain I have is resistant to caprylic acid. I've probably had it since very young! It did not show up in culturing a few months ago but that makes sense since a biofilm will secure microbes very well and not enough may get out of the bottom of an [*bleep*] (or into a blood stream) then into a petri dish. However, PCR can pick up and amplify the genetic fragments that do get pulled out of the films.

There is another drug that works in a very different fashion on fungus. It is very controversial and can only be obtained from a veterinarian. It is called lufenuron. There mostly is a lot of bad propaganda on the internet and some scary reports. Care must be taken to not ingest a grade that is used in agriculture on plants to kill bug pests; for the impurities certainly will give people strange side effects or make people sick or worse. There have been no clinical trials in humans on the drug but I think that it truly is no more dangerous than the long, tried and "true???" antifungals. Its mechanism of action is very different from the classic antifungals and claims are that it has no toxicity on the liver and kidneys. However I have read that it effects many other metabolic processes and is retained in fat (the latter which is part of the medical treatment). But that scary propaganda is probably a list that is shorter than the list of side effects in the already accepted antifungals. It can be difficult to balance and read the scales right. I love conspiracy theories!! Watching that is good for a laugh!

I hope that helps. Fibromyalgia may be caused by chronic stealth infections!
Posted By: Janclebro Re: Fibromyalgia - 01/09/18 08:17 PM
You raise some interesting points, Kevin. The laboratory that tested my candida doesn't sound quite as sophisticated as yours, but they did come up with a species. Initially (June 2017) it was candida krusei, a very rare species, plus they mentioned that there were other unnamed species. The candida krusei was tested as sensitive to oregano oil.

A second test in November 2017 now showed no obvious signs of the krusei, but instead showed a much greater proliferation of candida glabrata, 10e9 which I was told is extremely high. Though less rare than the krusei, it is notoriously difficult to treat as it apparently becomes resistant to whatever you throw at it. Unfortunately by November the laboratory was no longer testing sensitivities for fungal pathogens, so I'm buying up whatever natural antifungals I can tolerate and trying to rotate them. Well that is what I should be doing in theory, but the reality is that I keep reverting to the oregano oil! I understand I have quite a journey ahead, which is why I've given up fruit.

Regarding biofilms, I understand that yeasts and bacteria can work together in this regard. I've been taking enzymes daily to help with breaking them down. I also drink warm water with fresh lemon most mornings.

A nutritionist suggested I try a course of medical antifungals, followed by another course a month later. I'm considering it but would like to deal with the bacteria problem at the same time.

Which candida are you fighting?
Posted By: jay_bharat Re: Fibromyalgia - 01/10/18 04:31 AM
Hi Jane,

I have bloating starting about half an hour after eating only when I had food outside home, at a time when I was away from home for some days. I do not have it now. since it is not there always, I think it may not be related to bacteria.

The present criteria for fibro does not consider tender points. It considers whole body wide spread pain. They present a questionnaire to the patient. Though, I do not have many of these symptoms, since every other thing such as bone, muscle are normal, doctor is suspecting fibro.

Thanks for the info.

Posted By: jay_bharat Re: Fibromyalgia - 01/10/18 04:33 AM
Hi Robin_H,

I think massage has definitely given me some relief.

Posted By: Robin_H Re: Fibromyalgia - 01/10/18 02:14 PM
Hi Jane:

Mine is C. Albicans.
Posted By: Janclebro Re: Fibromyalgia - 01/12/18 06:06 AM
Hi Jay, I'm interested to hear what you say about tender points, as mine come and go. The fact that your bloating is not there all the time could be diet related, especially as it seems worse when you eat out. Maybe you're giving the pathogens less to feed on at home? - Jane
Posted By: Janclebro Re: Fibromyalgia - 01/12/18 06:08 AM
Hi Robin - have you tried oregano oil? It's an outstanding antifungal. - Jane
Posted By: Robin_H Re: Fibromyalgia - 01/12/18 09:23 AM
Hello Jane:

I have tried oregano oil. I have much stock. I am not clear as to how it effected me but I use it on occasion. It is a broad band anti-microbial: > 80% carvacrol.

I am on a strict NSD now but it isn't helping me to improve however I know that it establishes some stability. The six days of amoxicillin did harm. I do sense more microbial activity in the gut and lots of gas without having changed the diet I have had for a few years. Also neuropathy in the hands (stemming from the spine) and neuropathy in the feet and legs (from I am not certain what) has gotten worse.

Perhaps going back to an array of broad-spectrum antimicrobials will reduce symptoms of inflammation in time.

I feel the need for probiotics now that I have hit my gut flora with amoxicillin and gotten unwanted symptoms. But I feel that doing a few weeks of probiotics followed by a week of anti-microbials is too long of a gap between the two since I probably have increased unwanted microbes yet need some good reinforcements. I am considering spacing the two by hours now instead off weeks.

Interestingly, the naturopath named Eric Bakker makes a set of pills called CanXida: one has antimicrobials, a second pill is packaged with enzymes and probiotics, and a third pill that is full of vitamins and minerals. He suggests taking his antimicrobials with the probiotics!!! If he says that in his many years of working with patients that this combination works then who am I to question that with my theories!!

I am tempted to use NSAIDs to reduce inflammation and the associated damage. Being too pendantic about banning anti-inflammatories and soldiring the excessive inflammation seems to have accelerated disease progression. But then it was using them for too long, or at all, that got me in this mess so late in life. Damned if I do and damned if I don't!

The composition of oregano oil varies between brands. My pharmacist friend emphasizes that most brands try to sell their product based on maximizing what is considered the active ingredient: carvacrol. He says that we should strive to find a brand that has a better balance of carvacrol and some other compound in the oregano oil because evidence shows that there is a synergistic effect between the compounds; just like there are synergistic effects between "innocuous" microbes. But I digress.

Posted By: Robin_H Re: Fibromyalgia - 01/12/18 09:44 AM
I want to add one more pet theory.

I was strong and healthy until a year after a flood in 1992 that established about 950 squre feet of mouldy basement walls. I breathed that for eleven years. During that time I had mycotoxin symptoms but did not know about the effects of mould then. Within a few years after the flood I was finally labelled with fibromyalgia after my doctor ruled out arthritis and anything else he could think of.

I feel that fibromyalga is a label that doctors use to define a syndrome of symptoms when they do not know what the cause is -- and many causes have overlapping effects. However, in some lucky cases some patients may be correctly diagnosed with a different, well understood illness and properly treated before getting that label.

I also developed cyclic spinal inflammation between the shoulder blades and sometimes it felt like a hot knife was being pressed into my spine. I postulate that it was breathing the mycotoxins and chronically activating the immune system that surrounds the lungs that caused my back pain by the lymph draining into lymph vessels in that area.

The generally innocuous mould likely colonized my gut, sinuses and lungs over those eleven years. Then ten years later, due to a number of factors (NSAID use, job stress and no sleep for a year, earlier jobs having heavy metal and toxic chemical exposure), the fungus took the opportunity to gain ground and maintain gut damage. This damage opened the door for other microbes to get closer to my immune system and even into the body to increase systemic immune disturbances. In the long term of that battle my body has gotten worn down and disease has increased. Doctors like to call this "just getting old before one's time."

I think doctors have to look at ageing differently. I think that doctors trivialize the existence of candida or other fungi and potentially pathogenic organisms in our gut and the effects that they have long-term. I might as will just drink if they have that attitude about "commensal" mirco-organisms. Similar attitudes existed around HPV until it was discovered to cause cancer.

Life is an STD!
Posted By: Robin_H Re: Fibromyalgia - 01/13/18 08:21 AM
Hello Sue:

It sounds like the inflammation has caused compression and damage to the nerves in your cervical spine.

Originally Posted By Sue22

Also, where the damage is done like my neck, that's always a problem...Humira just makes it a bit better, but my face is always somewhat numb, and I must sleep in a recliner, and haven't been able to find a new car, all due to nerves being compressed, in my neck, due to the damage, due to the spondyloarthropathy.

Have you considered chiropractic to release pressure on the nerve roots? It is amazing how many symptoms can be created by pressure on the nerve roots in the spine: angina, numb hands, visual sensitivity to light, false trigeminal neuralgia, sinus pain and mucous production,...


I am surprised that I am endorsing chiropractors because for the longest time I considered them to be gullible, pseudo-scientific quacks or just money grubbers -- I had to pay out of my own pocket since I had no gov or private insurance to cover them. However, I am open to their efforts with care. It is difficult to find a good one. Over the course of seventeen years I have tried four: the first one was horrible. The second one did no harm or good. The fourth and last one I saw many times had no positive effect. The one before him was the most effective: 50:50 hit or miss.

I have had occasional pains in the extremities for over twenty years. A rheumatologist would rarely consider that the greater suboccipital nerve in the neck was connected to the knee bursa. I am making that up to emphasize my point but it is true (metaphorically) and in a literal sense.

Chiropractic has worked on the irritation between my shoulder blades 50% of the time. I rarely used it. It was a localized pain. But when it worked I could relax much more for months afterward since the pressure on the spinal cord was finally released. Pressure on the spinal cord will stimulate the sympathetic nervous system and cause insomnia, hormone imbalance, phantom pains, inflammation,... I no longer think that this is pseudoscience and can imagine how it can be explained physiologically.

The first chiropractor I ever saw when I was about 25 was aggressive and gave me whiplash that now is a major problem in my neck. It's been point of obvious rapid deterioration for the past two years likely accelerated by an infection. So I am wary of chiropractors but have recently considered their value to me to get rid of the pain in my face, eye orbitals, temples,...

My internal medicine doctor is confused regarding my combination of symptoms and considered the origin of my face, sinus and skull pain to be from the trigeminal nerve. But that did not explain other pains nor are my pain patterns typical of trigeminal neuralgia. Since I often have chronic sinus complaints that seem to extend out of the sinuses we had considered that a chronic sinus infection that effected the trigeminal nerve could be the cause. Or maybe both and they feedback on each other.

Almost a year after getting sea water in my left inner ear during a scuba incident I developed inflammation at the base of the scull around C0, C1 and C2,... perhaps further down too (by Jan 2017 I finally had chronic burning and inflammation in the sacrum, but that isn't my point.) That, without the details, cascaded into full axial inflammation. Remission was obtained but the seeds for future flares had been planted. Those future flares eventually finished off the job in the cervical vertebra and symptoms of trigeminal neuralgia began.

But I'll just add, once something does damage to the vertebra that house the nerves that effect gut function then the disrupted gut function will effect our immune system and hence feed back right to the vertebra in our back. So the cycle needs to be broken at as many places as possible -- remove pressure from the nerves, heal the gut, lower inflammation, etc.

In all that I said you already seem to know that your face pain is from your neck.

A sub-point is that I could have a chronic fungus infection in the gut that aids other microbes to cause IBS which drives the immune system triggering inflammation effecting the spine which effects the gut function which aids gut microbes to cause IBS which drives the immune system triggering inflammation effecting the spine which effects the gut ...

In July I started to get a mild tingling in the left corner of my mouth. Now the left side of my jaw is almost always burning, I get burning behind my ears, an almost chronic occiptial headache with burning, sinus pain, a burning upper left eye lid, and more in my neck face and skull. I've always thought that my problem was infections; one source being my sinuses. Perhaps is was at one time but now is the result of nerve irritation.

However, before all the problems in he neck and face I did have a sinus problem and it could be a constant source of mould re-infection in the gut. I can try healing my gut all I want but it will get re-infected until I get rid of the sinus infection.

Since Sept/Oct I started to get twitching in my calf muscles, burning in my right shin, constant but ache and burning,... this is likely pressure on another set of spinal nerves.
Posted By: Sue22 Re: Fibromyalgia - 01/13/18 05:42 PM
Originally Posted By Robin_H
Hello Sue:

It sounds like the inflammation has caused compression and damage to the nerves in your cervical spine.

Originally Posted By Sue22

Also, where the damage is done like my neck, that's always a problem...Humira just makes it a bit better, but my face is always somewhat numb, and I must sleep in a recliner, and haven't been able to find a new car, all due to nerves being compressed, in my neck, due to the damage, due to the spondyloarthropathy.

Have you considered chiropractic to release pressure on the nerve roots? It is amazing how many symptoms can be created by pressure on the nerve roots in the spine: angina, numb hands, visual sensitivity to light, false trigeminal neuralgia, sinus pain and mucous production,...

Thanks for that.

Actually, I see my chiropractor nearly weekly...for about 5 years, I was seeing him twice a week, but finally on humira, it is down to about once a week, unless I'm sick or the weather / roads are bad.

A lot of people say be very careful with chiros, some here say never to go.

My experience has been to be careful...the old fashioned "crack the back" in a jerky motion would do me a lot of harm, I know that; a very good "old fashioned one" even told me that when a doctor sent me there.

My first wanted to be aggressive with me, but I wouldn't allow it, so all they did was ultrasound, which helps me a lot, but now I have a home unit. Then that good one who told me that he'd do more harm than good for me. He sent me to one who used an activator, but I needed more than just my spine gently adjusted with an activator; I needed someone who does soft tissue work in general.

I was almost on disability, and was desperate for help, when my ribs started to subluxate and I had ribs stuck under my shoulder blade...THAT was PAINFUL!

The year prior when it happened, 2 physiatrists (doctor of physical / rehab medicine) and several PTs didn't know what was wrong and none of them could help took 3 months to partially resolve and 6 months to fully resolve and then same time next year, same thing happened, and if not for my current chiro, OMG, don't know what I'd have done!

So yeh, he helps my neck, my spine, my SI joint, my ribs, my upper back...gently...he'll do manual traction on my neck when I ask him to...basically its all about gently getting things to move that get stuck, and he's very good at that....

and he also helps with other body parts when I need him to...this past week, my left ankle was stuck, and my right knee hurt when I bent down and turned to the side, so he worked on those along with my neck and SI joint. For a few months, he helped me with shin splints that had flared up, and a "hip" problem that stemmed from my last SI joint flare....took about 3 months of weekly work to settle those two problems down.

He's been a life saver, a career saver, a sanity saver.

But from my experience, not all are created equal. He's a "sports-certified" chiro. Also certified in ART. I think having a lot of tools in his toolbox is the secret for me...and knowing how gentle or aggressive he can be / needs to be with people.

Last time he worked on my neck, he used a towel instead of his hands for the manual traction, it was awesome!

Like you said, just relieving the pressure off those nerves.

That's also why I'm being more vigilant with my yoga.

PS as for the gut...I think all my problems started in the gut...I have had chronic constipation since before I stated school...had severe gastritis and wasn't digesting my food for a year when I was its usually constipation til I take humira, a few good days, starts going downhill, constipated again, take more humira, a few good days, etc....its all very cyclic with the humira...and when I'm on methylpred, my stomach and bowels are excellent...

I do my best to deal with my stomach and intestines through:


diet (for me that's no cow dairy, limited goat and sheep dairy, limited eggs, limited S cerevisiae yeast)

probiotics each morning

Probiotic foods: sauerkraut and coconut milk yogurt

Prebiotic foods

ginger and mint (both seem anti-inflammatory for my stomach (and maybe my gut)

plan to try other things along the way

but yeh, for me, it all starts in the gut....

I had inflammation and "crohns-like" ulcers in my ileum when they checked with a colonoscopy. If they had checked during a flare, I'm gonna guess that it probably would have been even worse...I wasn't flaring at the time....who knows, maybe if they had checked back in 1993 when my gut was flared badly for a whole year, maybe I would have been dx'ed with Crohn's, I don't know?

For me, it's definitely all connected.
Posted By: jay_bharat Re: Fibromyalgia - 01/14/18 05:15 AM
Hi Jane,

Doctor has not checked for tender points. He has given a questionnaire regarding pain related issues.

Maybe you're giving the pathogens less to feed on at home?

What is your idea?.

Posted By: jay_bharat Re: Fibromyalgia - 01/14/18 05:21 AM
Hi Robin,

Fibro is diagnosed when nothing could be established through test results and the existence of some symptoms. I strongly agree.

Posted By: jay_bharat Re: Fibromyalgia - 01/22/18 02:23 PM

Anyone tried Lyrica. How effective it was and is there any side effect.

Posted By: Anonymous Re: Fibromyalgia - 01/23/18 11:26 AM
Lyrica also known as Pregabalin is a medication used to treat epilepsy, neuropathic pain, fibromyalgia, and depression.

I was on it for the pain of nerve damage (neuropathy) caused by A.S. Such pain is notoriously difficult to treat successfully and some patients never have complete relief of their pain. In my case it was of little use and I was soon found some other similar medication that is also of very limited use.

As for the side effects of Lyrica there is a long line listed and you had better check it out on the Internet before you start on what is a very potent drug that must only be taken with great care.
Posted By: Robin_H Re: Fibromyalgia - 01/23/18 01:37 PM
Hello Frederick:

Is the nerve damage that AS does only from compression from bone or other inflammation on nerves, or does AS also directly attack the nerves?

I have started developing neurological tingling, stinging and itching in my legs, arms, face and neck; not all at once, they accumulated in the past five months.

May the Force be with you!
Posted By: jay_bharat Re: Fibromyalgia - 01/24/18 04:19 AM

I did check in web. I wanted to have personal experience of others with this drug. It appears many people experienced side effects.

Posted By: Smed Re: Fibromyalgia - 01/25/18 02:46 PM
My wife tried it for a while for fibromyalgia. Had swelling of feet and water retention with weight gain.
Posted By: jay_bharat Re: Fibromyalgia - 01/26/18 03:45 AM
Thanks. They appears to be the side effects many feel. Was that useful for fibro.

Posted By: Smed Re: Fibromyalgia - 01/26/18 01:20 PM
Tramadol--no idea how to spell it.
Posted By: jay_bharat Re: Fibromyalgia - 01/27/18 06:41 AM
Yes. Thanks.

Posted By: Sue22 Re: Fibromyalgia - 01/27/18 03:37 PM
Originally Posted By jay_bharat

Anyone tried Lyrica. How effective it was and is there any side effect.


I tried it for the nerve pain due to nerve compression in my neck...

all it did was give me terrible migraines....all day, every day...

I started at a low dose which was too low too help the nerve pain but high enough to give me the migraines.

couldn't take a high enough dosage to know if it could have helped the nerve pain.

don't even think migraines was a symptom on their list, but that's what it did to me, oddly enough.
Posted By: jay_bharat Re: Fibromyalgia - 01/29/18 04:33 AM
Hi Sue,

Thanks for the info.