Please send Your comments Re: HHS Draft for Pain Best Practices


Hello Luvs,

I just wanted give my readers a little “nudge” & remind you all to visit the The HHS Task Force online, which has provided a 90 day public comment period (ending April 1st,2019)

Click here to post your comments re: the HHS Draft for Best Practices (90 day comment period)

****In the Search Box, put these words so you’ll get to the correct place for commenting: HHS Draft for Best Practices.

I implore you to send in your comments. This is our chance to have our voices heard. Please go to the above link, in order to have your voice heard regarding the Draft Report to HHS. * my comments are copied & pasted for you below.

There are three different ways that you can send in your comments regarding this Draft report:

**When you write, email or post your messages regarding the Draft Report, please refer to this Docket Number:HHS-OS-2018-0027

How to Submit Comments:

1) Visit this Federal Portal at: http://www.regulations.gov

 2). Or you may Email topaintaskforce@hhs.gov

3) or use USPS and you may Mail written comments to:

U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Health200 Independence Avenue, S.W., Room 736E,Attn: Alicia Richmond Scott, Task Force Designated Federal OfficerWashington, DC 20201

These are my thoughts. I will be condensing them into being my comments to the HHS Best Practices (again, comment period goes until April 1,2019:

  • I agree with the “individualized patient centered care”. But allow the Dr./Patient relationship to the determine treatments. But don’t allow the government, pharmacists/pharmacies, to override the treatment, including type, class & dosage of pain medications. Pain management Drs. went through, in many cases; 14-15 years of extra education. They know more about what’s best for the patients.
  • Opioids taken as prescribed, have less harsh & lasting side-effects than many other medications that are prescribed freely for patients today (such as Bupenorphrine, Suboxone)
  • 1) Many medications can cause death, if an overdose occurs.  2) Many medications can cause physical dependence, including heart, blood pressure and even insulin.
  • Pain Medications shouldn’t be decided on by what illness(es) a patient is living with. Pain is subjective and the CDC, in their 2012 response to Andrew Kolodny, stated that there was no research to prove that there’s any difference between cancer and non-cancer pain. Mr. Kolodny was trying to say that cancer pain was the only worst pain. There are a number of illnesses nicknamed “the suicide disease”,( including: RSD/CRPS, A.S., T.M. & others). People with comorbid highly painful conditions, should not be lumped & labeled as a sum of their illnesses. Everyone metabolizes differently. Some people may do well on a certain medication, while it makes others desperately more ill (due to the horrible side effects).
  • Nothing should ever be dictated “across the board” . Never should one rule be applied to 100 million chronic pain Patients. Some people living with illnesses such as Ehlers Danlos syndrome, for example; don’t metabolize medication like most other people do. They may need a much higher dosage than what the recommended ceiling of 90MME allows. By the way, when did recommended become law?
  • The CDC Guidelines were supposed to be just recommendations for General practitioners. But not even a year later, pain management Drs started being hassled by the DEA & other government & law enforcement officials. In 2018, they turned into “laws”. In many cases, good Drs. Have been losing their livelihood, their entire life’s work, because the DEA thinks that they had too many pain patients taking higher doses of opioids! It’s normal that Pain clinics would have a much higher number of people taking higher dosages of opioids.
  • Many persons who are living with several lifelong chronic painful illnesses, do not wish to have: massage, Reike, acupuncture or anything involving touching. People for example with CRPS, (systemic especially), cannot bear the pain of touching like this.
  • Many of those who live with horribly painful Rheumatoid disease, Neuropathies, Ehlers Danlos Syndrome & others, may get worse from doing things like Yoga, Tai Chi and even PT. (I had 9 years of PT & it made me worse & not better,many times)
  • Meditation most often doesn’t work well for the patients living with anxiety &/or PTSD, for example. *If it does help a little; it still does not lower high amounts of pain for the rest of someones life. Not enough to give someone their life back after a catasrophic painful event.
  • Why should anyone be forced to get an invasive surgery over taking a simple oral pill? Again, any medication is dangerous if taken incorrectly or by a person other than the intended patient. Therefore demonizing only opioids makes no sense.
  • Many persons aren’t candidates for the SCS and/or intra-thecal pain pumps. Many living with several painful illnesses have also compromised immune systems (CVID +others).
  • It appears that nobody on this HHS task force lives with chronic pain, in high amounts, due to lifelong, high pain chronic illnesses? Because they should know that no amount of meditation, injections or tai chi, would end ongoing continuous life long chronic pain!
  • *meditation, music therapy and aqua therapy may help to lessen pain for a short period of time (**if the patient doesn’t have an aversion to being in water or have open sores due to secondary illnesses)
  • As you can see, there’s no one fix for everyone. Mostly because we are individuals who must have individualized care. Nobody should be putting one group of persons with physical chronic pain or PTSD, ahead of another group of survivors. You don’t know what horrors anyone has been through. A soldiers PTSD may be horrific. Also horrific may a grown up’s PTSD. Someone who had lived a life of horrors in their own home (which should’ve been a safe place), at the hands of abusive family members.
  • Please don’t prescribe dosage limits “across the board” for everyone. That’s not keeping with the physicians code of ethics “to do no harm”!
  • Don’t pick & choose what medication or dosage by each illness or condition. Some medications work for one person and don’t help others
  • Give the physician back their right(after years and years of education & experiences) to diagnose and treat people with ongoing lifelong pain. Keep the Dr/patient relationships together, without intrusion or interruption in patient care!
  • Please keep in mind that chronic pain does not = addiction.! Just because someone needs opioids to help high amounts of pain (*that will most often, never go away), does not make them an addict. It shouldn’t give them the label of “substance use disorder” either!
  • Do Not make the Hippa privacy laws a joke or obsolete. Confidentiality matters! In order to have any confidence in your health care team, you must trust them. What I’m saying is that the police departments and other employees of the government or anywhere, should NOT BE GIVEN ACCESS TO THE MAPS*! The MAPS are already invasive enough without giving access to everyone!

There are a few good parts to the draft:

  • The suggestion to treat each patient on an individual, patient by patient basis.
  • Stop raiding innocent Drs offices.
  • Stop taking physicians livelihood/careers away because someone at the top of the ladder at the HHS, CDC or elsewhere; lost a brother, mother or best friend, to opioid abuse &/or addiction, that ended with a death, loss and then turned into bitterness!
  • Give more hours of education in pain management to medical students

Lastly, opioids are a safe, effective and an inexpensive way to treat lifelong chronic pain, for many patients in this category. They help & work for so many! Especially legacy patients with multiple high pain comorbidities, depend on opioids to have some semblance of life. I know, because it happened to me and I lost my LA/ER pain medications in Sept 2018. I have a much less full life now.

The PTSD, that chronic pain patients are living with after being legacy patients who had been doing well taking opioids for a decade or two or three, is a nightmare! People are becoming a shell of their former selves. Persons with multiple & painful comorbidities, who were able to possibly do a job, be a mother, father, caregiver or grandmother, while taking opioids (*also btw, never getting high from their opioids!); are doomed to live a half-life in bed or a recliner forever. Many are committing suicide.

I read some nasty comments on an article recently (I’ll look for that article. Sorry, I can’t remember where I saw it, but I will find it and post for you asap). There were comments from a person who lost someone to an opioid overdose/addiction. She said she was  “tired” of hearing about pain patients contemplating suicide. Tired of seeing where chronic pain patients have written in whining that “if they don’t get their pain meds back they will kill themselves”. Well, I pity that lady because she’s obviously never gone through anything that involves long term, never ending high amounts of chronic pain. The chronic pain population needs to know that there is hope. Because someone doesn’t contemplate suicide, where there is “Hope”. So someone please tell that woman to “chill out” and to “be kind”. Also, tell her not to cut down, put down, belittle or be insidious about life long, never ending, high amounts of daily chronic pain.  Unless she is in my shoes/our shoes, our wheelchairs, walkers, crutchs, braces and motorized scooters, don’t judge!

Unless you’ve lived with high levels of continuous chronic pain that you know will never ever stop; don’t judge the chronic pain patient who chooses suicide over being a burden to their loved ones. Maybe they have no loved ones and cannot bear to be alone forever with such high amounts of under-treated or untreated pain? Don’t judge someone who’s been doing well for over a decade and suddenly they lose their pain relief and they’ve resorted to “living” a half-life in their bed or a recliner.

These drafts really need more work. There are a lot of contradictions. Tylenol/Acetaminophen is very dangerous and can kill it cause liver failure if taken continuously. Which is what a chronic pain patient will need! NSAID’s cause kidney failure and anyone who thinks Tylenol or Aspirin will help pain levels at a 7,8 or above; doesn’t know anything about pain. In fact, they’ve never lived with ongoing chronic pain illnesses that are Incurable.

Lastly, meditation, grounding, yoga & aqua therapy are nice for PT patients rehabilitating. They’re fine for some people as an addition to pain medication therapy. But they’ll never work alone to end or relieve high amounts of pain for a person who will most likely need pain control forever. It’s just impossible for anyone to go several times weekly and pay for PT forever! Not everyone has access to a pool. Then there are those of us who have open sores from secondary illnesses or from systemic autoimmune and other issues. I’m sorry, but “grounding” is just silly and I’m entitled to my opinions; as are each one of us.

The above paragraphs are my thoughts about some of the HHS Draft for Pain Best Practices. I’ve got to condense these thoughts so that I can actually leave a comment. With the government shut-down, I’m not sure exactlly what will be happening to this side of things? If I find out any more, I promise to inform all of you.  But lets still get those comments posted before April 1, 2019. If we follow the rules, then hopefully someone will hear us. If we wait to see what happens, it may be too late.

Remember not to be long winded. My comments will be condensed version of my issues with the HHS Draft. I will post it for you once I’ve gotten it all set up on the .gov website). Tell them who you are and how you feel about the HHS Draft for Pain Best Practices. Let them know that there are many contradicions in this draft. There are so many things wrong with telling someone who is living with #’s 7,8 or 9 on the pain scale, to take NSAID’s or Acetamenophin. Theres definitely something ludicrous about taking opioids away from someone who’s been doing great with them for a decade or two or three. Opioids are harmless, with very low or no side effects. When taken properly as prescribed for long term chronic intractable pain.  On the other hand, if you research Suboxone and Bupenorphrine. They have horrific side effects and you cannot taper off of them slowly because the medication works against you if you attempt to do this. I have  received several written accounts from chronic pain patients who believed in their physicians and blindly took what was offered to help their pain, as a last resort. They thought it would be better than nothing. (*these accounts will be in a future blog post).

MY OWN COMMENTS:

I have been living with high amounts of chronic pain on a daily basis since a catastrophic car accident in 2002. I did all that was asked of me as far as having 8 surgeries, 9 years of PT, 3 years of TBI rehab and 3 years worth of pain clinic Biofeedback and  injections to my knees, shoulders, neck and spine.  I am not a candidate for a pain pump, due to CVID. I tried many medications and most either made me deathly ill or just had horrible side effects that added to the pain. My story is not unique. Many thousands of chronic pain patients attempt to do all that they can do, prior to taking opioid pain medication. When pain is lifelong, whether you are old or young; the idea of staying in a state of high chronic daily pain for decades upon decades, is daunting.

This draft needs much more work. There are too many contradictions.  There especially needs to be more done for the legacy patients who have been doing well on Opioid therapy for chronic pain.  Legacy patients, like me, are being put into “no win” situations. We have had our medications forcibly taken after doing relatively well for years. Forced tapering is bad for anyone.  It is life altering, dangerous and has taken lives. Why would you mess with something that is not broken?  If someone has been doing well, how could you fathom stopping the regimen that gave them some semblance of a life?  Then what? Then these people are unkowingly prescribed horrible meds like Buprenorphrine / Suboxone.  After much research, it seems like most of this manufactured “opioid hysteria” is for money making. That is shameful to use and even kill innocent people just to allow someone else to get rich.

Why are we making insurance companies pay for all of this acupuncture, massage and yoga etc? Those dont work for long term chronic high pain illnesses where the patient deteriorates as the years go by. The majority of chronic pain patients that I know, say that they don’t want to be poked or even touched, because it hurts too much. This is not a solution. Please try to understand the reality of this situation. Don’t allow people who are living with high emotions, to be in positions of power, in charge of important decisions for the chronically ill. Persons with powerful positions who are greiving & who have lost someone from an overdose shouldn’t be making decisions that affect & involve millions of lives. Most people who have lost a family member or close friend from an overdose, won’t be rational in their decision making. Then they end up punishing an entire community of innocent people because they lost someone (*usually their loved one had overdosed by taking someone else’s prescription or illegal/illicit drugs to numb psychological pain).

Please stop demonizing Opioids and selling the idea that these inanimate objects cause addictions and drug overdose. Addiction is a gene that someone is born with. It shows up in some people and not others. Opioids do not kill people any more than guns kill people. It is when the opioids or the guns who get into the wrong hands. Then the people behind them choose to make terrible decisions and others then die from drug overdose, homicide or suicide. Please remember that opioids are inexpensive, accessible (or they were) and they have few or no side effects. They have been helping many chronic pain patients for years and years. The medications are not “bad”, it is the people who obtain them illegally and then do things to the medications or with them, other than the intended purpose. That is what is dangerous and killing people. 

Chronically ill persons living with high pain illnesses cannot take Tylenol or NSAID’s for the rest of their lives without horrible effects and outcomes. Those medications are not made for long term. They cause liver and kindney failure and worse. Also, this same group of ill citizens, are usually unable to do or pay for complimentary therapy treatments for decades at a time. Lastly, please leave the pain care physcians or any physician trained properly in the management of chronic intractable pain, to make the decisions that affect the pain community. These Dr’s have been highly educated for many extra years, in order to learn how to treat chronic pain.  Stop politicians, PROP, Addiction specialists, pharmacists, the CDC, FDA  and insurance companies from making medical decisions that should be left up to the Dr. and patients themselves. Thank you! Sincerely, Suzanne Stewart

Health experts offer solutions for unintended consequences of opioid crackdown | Fox News


Hello Luvs,

This information came to me via an email & so I wanted to share it with you:

The most urgently needed first step to addressing the misunderstandings about Centers for Disease and Prevention opioid prescribing guidelines, many clinicians and health experts say, is for the agency to clarify – in a high-profile way– what the guidelines were meant, and not meant, to do.
— Read on www.foxnews.com/health/undoing-the-harm-of-the-response-to-the-opioid-overdose-epidemic-health-experts-suggest-solutions.amp

Also, here is The Fox News Sequence of Stories Regarding the Opioid Hysteria & Chronic Pain Patients .

One of several very special physicians, who’ve been helping fight for the rights of Drs and chronic pain patients is Dr Stefan Kertesz, MD. He is quoted in this article on Fox News:

  • “We’re targeting the most vulnerable and sickest people who have been on opioids a long time”.

Dr. Stefan Kertesz, addiction specialist and professor at the University of Alabama at Birmingham School of Medicine.

Richard Lawhern, a very staunch advocate for chronic pain patient community; is also quoted in this report. He is also advocating for his wife daughter, who live with chronic pain. Here is the quote from Richard aka “Red” Lawhern:

  • “The [CDC opioid guideline] document is fatally flawed and needs to be withdrawn for a major revision in an open public process by qualified experts in community practice for chronic pain treatment, assisted by representatives or advocates from chronic pain communities.”

— Richard Lawhern

Lastly, Lauren Deluca, founder of Chronic Illness Advocacy & Awareness Group“,(an ever growing & popular Non profit 501/3c) is quoted here:

  • “Too many flawed approaches and policies targeting pain patients, she said, “will take many years to undo, but we can’t wait years.”
  • She also was quoted as saying this: I myself was a healthy 36-year-old professional embarking on starting a family and in a blink of an eye my life was destroyed due to a denial of care,” Deluca said. “It’s not just about pain; it’s about quality of life. Now we are teaching doctors to ignore pain, which not only leaves the patient suffering but likely will lead to many not getting diagnosed, therefore not only will they not receive pain medications they will not even receive basic care.”

Please read the entire Fox News series of three stories. They are focused on different aspects of this Opioid Hysteria. Also the lack of treatment and compassionate care for the chronic pain community. *The current story, (3rd in a sequence of three), and the other stories in the sequence can be located above. They are the first two, blue hyperlinks, near the top of this blog post.

Lastly, I wanted to share something on the same subject but different platform. As I mentioned above, Lauren Deluca is the founder of CIAAG. (a Non Profit 501 c-3. The link to her group website is above, but let me add it here for you as well: Chronic Illnesses Advocacy: & Awareness Group)

Link to The Documentary Trailer “Untreated: The Healthcare Crisis”

She recently attended an International Meeting with the United Nations in Vienna. According to her website, Lauren spoke about the inhumane  treatment chronic pain patients are facing due to the ‘Opioid Crisis’ in the United States. 

Here’s is a link to get you to a YouTube video that shows her speaking in person at the event:

United Nations Office of Drugs and Crime: 61st Commission on Narcotic Drugs

Please look over everything, that I’ve tried to present to you in one neat little blog post. I hope that you feel updated and possibly more optimistic about the changes coming in this New Year, 2019.

Something must be done to change the deplorable conditions that have been put upon the chronic pain community! These great leaders and others, working together as a united front; that is how we are going to help make the changes that we need to see happen this new year!

Thank you for coming back to visit and read “Tears of Truth”.

Draft Report on Pain Management Best Practices | HHS.gov


Hello Luvs,

What do you think of this?Request for Comment on the Draft Report, proposes updates to best practices and recommendations for pain management, including chronic and acute pain.
— Read on www.hhs.gov/ash/advisory-committees/pain/reports/2018-12-draft-report-on-updates-gaps-inconsistencies-recommendations/index.html

So, after you read about what the HHS task force has decided is best practices for people living with chronic pain. If you read the list of meds; it starts out with Acetaminophen, NSAID’s, Anti-convulsants & Anti-depressants. Then they discuss aqua therapy, PT, massage, Tai-chi, etc!!

What the heck don’t they understand about real pain, nerve pain, chronic pain? We don’t want to be touched because it hurts! I don’t know about you, but aqua therapy isn’t good for someone like me who has open sores from years of CRPS and Eczema secondary to that! How about NSAID’s that I cannot taste because of chronic kidney disease? Acetaminophen taken too much, too often causes liver failure and even death! Sooooo my opioids do not/did not cause any issues to my body except for occasional constipation! Big deal! Get Miralax or some “Smooth move tea”!

This once again, is upsetting to me and to many others! On one hand they advise to treat people as individuals case by case. On the other hand, they’re advising people with large amounts of ongoing chronic pain, most probably for a lifetime, to take Acetaminophen. How is that right or even thinkable for someone like me, for example? I was quickly tapered from Fentanyl patch after doing well on it for 14 years!! Now I sit in my recliner 16+ hours a day due to pain and fatigue. I honestly cannot take NSAID’s and “Tylenol just won’t cut it, Mr. Sessions!!”

Let me know what you think about the HHS task force recommendations?

Kratom, Great Help For Most but Deadly for Some


Hello Luvs,

There was a bit of a debate in one of my groups, regarding Kratom. I know it’s so helpful for many people. I do not think the government should step in and ban this too!! It’s relatively safe but I was discussing that it can and may help loads of chronic pain patients, but not everyone!

Like anything else, you need to discuss it with your Dr ahead of time and please get an EKG first. I have several complicated heart arrhythmias. One is pretty uncommon but most people don’t even know that they have it until they die from “sudden cardiac death” (which is its only symptom). It’s called “Long QT syndrome”. There are many thousands of medications on the “DO NOT TAKE” list with long QT syndrome. The list updates daily and herbs such as Kratom, Turmeric & Ginseng are among the things that people with LQTS cannot take. Please just be safe and I hope you continue to have or get access to whatever kind of pain relief works for you!

But please check out this article I’ve posted below:

Just a little was info about Kratom before you take it

Untreated: The Healthcare Crisis-A Documentary


There are several people and organizations making Documentaries about pain patients getting “left behind” in all of the opioid hysteria right now.  A few that I’ve personally taken an interest in, are awesome. I feel that some Organizations, are trying to sway the chronic pain community into thinking that the physicians who are afraid to treat them now with any opioid therapy are correct in doing so.  There are those who promote techniques such as “grounding”, massage therapy, acupuncture and mindfulness as relief for life long chronic & painful illnesses.  There is a place for some of those things. If it is the patients choice, they could be added to other type of medicinal therapies, such as CBD oil, Medical cannabis, Kratom and/or Opioids.  But alone, these “alternative pain control therapies ” don’t help to control chronic &/or intractable pain permanently.  They also won’t help much when someone is living with high amounts of chronic pain from several illnesses on a daily basis. In my opinion, they won’t help someone who had been doing well on other medication therapies for many years and who suddenly got force tapered or stopped from something that gave them some semblance of a life, for over a decade in many cases.

But there is a new documentary coming out soon and it appears to be one of the best that I’ve seen. It looks very professional and it is in no way a “home video” or a “YouTube” video. It appears to be very well done and I really thought the message was and is clear.  Get the government out of the Doctor and patient exam rooms and relationships. Give the physicians back the power to decide along WITH their patients, what method is best suited for the control of their pain. Keep Hollywood, Andrew Kolodny and Dr. Phil out of our personal medical histories and give the chronic pain community back their lives. We are not expendable just because many are unable to work. Most of us worked for many years and paid into the Social Security program and had to have enough “points” from working, in order to receive the SSDI. So we are not “leaches” nor are we taking from our Government.  Most have been very dedicated to helping in society and being a part of every day life. Many chronic pain patients are former chefs, Interpreters, Secretaries and even teachers. Give us the benefit of the doubt and stop treating us like we are unworthy or expendable.

This documentary “Untreated: The Healthcare Crisis” is directed and produced by Time Thread Studios & their production crew, alongside Lauren DeLuca and Jayne Flanders. Lauren & Jayne are the original founders of CIAAG or “Chronic Illness Advocacy and Awareness Group”. They have a support group online and run a Nonprofit for chronically ill and disabled persons living with pain.  I have donated a small amount of $25.00 to this documentary because I believe in it. If you can contribute in any way, even $5.00 would help. If many people could donate even that amount, it would really help in getting this documentary out to the public.  What is stated in this documentary is true; “What we have is an epidemic of ignorance and fear and its ruining healthcare “.  The epidemic is not an “Opioid Epidemic” but one of instilling fear and panic to the non-pain community so they won’t truly understand.  Not until they or someone that they love is living with daily chronic pain and suffering due to the under treatment of pain today in the USA and Canada.

You’ll see in the movie’s trailer, that even the CEO of Reckitt Benckiser, Rakesh Kapoor has stated that “every major deal we’ve done actually, has created good value for share holders”. They are the makers of Suboxone, Bupenorphrine etc.  If you read a couple of my other articles (About Suboxone, Bupenorphrine & Naloxone and another Regarding Bupenorphrine- Suboxone and also Pain, Politics, Suboxone & Bupenorphrine ) regarding these drugs made for addiction, not pain; I believe that you will see a trail of money leading directly from them to this fake and manufactured Opioid “crisis”. “The goal is profits”, it says in the documentary’s trailer. It is without regard to the millions of chronic pain patients.  This movie will show how the Government is trying to control this “crisis” by limiting the supply of opioids for the pain community. It is stated that 319 medications have “no competition”.  The question arises “Is the FDA dragging their feet?” Also you will see that physicians are afraid to prescribe pain medications and we all know that is true. Then there is this statement, that “the intentional removal of effective pain medications”…. from people who live with daily chronic and high pain illnesses, “that is the definition of torture”.

The link to “Kickstarter.com” and the movie trailer is listed below. You’ll notice on the Kickstarter website that they have goals and various gifts for supporting this film.

Please check out this documentary and lets truly try to get this movie out to the public via Netflix and other venues. This documentary has our hearts and our souls in it. It is, in my opinion, a really effective trailer and the documentary, I believe, will even exceed our expectations.  “The pendulum has swung much too far in the wrong direction”, is another quote from “Untreated: The Pain Crisis” movie trailer. Please help by any donation that you can spare and/or by sharing the link below and/or this article to people in your own pain communities.

Click below, to see the trailer:

Untreated: The Healthcare Crisis Movie Trailer

Pain, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

All You Ever Wanted to Know About S.I.B.O.


S.I.B.O – Small Intestine Bacterial Overgrowth (A Chronic small intestine infection)

1) Definition and description of the disorder: (*This is from the info that the Dr’s office gave to me): Simply put, Small Intestine Bacterial Overgrowth is a chronic bacterial infection of the small intestine. The infection is of bacteria that normally live in the Gastrointestinal tract but have abnormally overgrown in a location not meant for so many bacteria.

2) What people are saying?: I posted an article on National pain report here:

http://nationalpainreport.com/sibo-the-missing-piece-of-chronic-pain-dysautonomia-8832039.html

**Most people have been saying that they have had problems like this for up to 20 years but had no idea what it was. They took my article to their Dr and their Dr’s did not know what it was for most. But some who went to specialist GI Dr’s, got the Breath test done and then they were diagnosed and helped. There are many comments following this article, of other things people are saying about “SIBO”. Also, people have gone months, years or decades before ever getting a proper diagnosis. It is known from what little research exists, that tress, trauma, autoimmune illnesses and more, can contribute to the symptoms of SIBO.

3). Symptoms: gas/expel flatus, within Small Intestine. The gas causes abdominal bloating, abdominal pain, constipation, diarrhea or both (similar to symptoms of IBS). Excess gas can also cause belching and flatulence. Also symptoms include painful and bloated abdomen

(*looking and feeling like a 3-5 most pregnancy), nausea, vomiting, diarrhea, malnutrition, weight loss, joint pain, fatigue and chronic fatigue.

4). Possible co-morbidities: People with SIBO normally have illnesses such as Dysautonomia and/or Autoimmune illnesses. This is information given to me at the Dr.’s office. But on the website listed below, on weebly.com, it is noted that There are many conditions associated with SIBO including: diabetes, scleroderma, Crohn’s disease, and others. There is a striking similarity between the symptoms of irritable bowel syndrome(IBS) and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some people diagnosed with irritable bowel syndrome. Autoimmune nerve damage to the small intestine is frequently a cause of SIBO.

5) Treatment Options: The treatment for SIBO is a 7-10 day course of antibiotics. They do treat the infection and so the symptoms disappear for awhile. The problems lie in that the disease that causes SIBO can’t be corrected at times. The symptoms return frequently, once the antibiotics are stopped. Some patients need to be treated with antibiotics repeatedly or even continuously. Some readily available probiotics used are: VSL#3 or FLORA-Q, but their effectiveness has not been proven. Also, Bifidobacterium infants 35624 is the only probiotic that has actually proven helpful in treating symptoms of IBS and SIBO.

6). FDA Approved medications: the approved medication for SIBO is antibiotic therapy. Also, a dietary supplement called “Allign” is often given in conjunction with the antibiotics. It is a probiotic which can help alleviate some of the bacterial overgrowth.

7) Complimentary Therapies: Allign is an OTC probiotic, that does alleviate some of the symptoms and some of the bacteria. Also, eating probiotic yogurts daily, will help cut down the occurrences of SIBO. Meditation and Guided imagery have been helpful in relieving some of the stress in the body and gut.

8) Best Nutrition: The best nutrition is to make sure that you eat yogurt and any other dietary items with probiotics in them.

*FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) are found in certain foods that are commonly poorly absorbed and fermented in people with IBS and SIBO, so restricting them can be very helpful. *there is a resource below that will help you with this and explain more about FODMAPs.

9) Best exercise regime: This can be difficult because what they have found is that exercise in any rigorous manner can actually worsen the symptoms of SIBO. But a healthy diet and walking 30 minutes daily for most of the days of the week, do help the symptoms of SIBO.

10) Local Support Groups: Right now there are only 4 support groups in the USA. They are NYC SIBO Support group, SIBO Support Group Los Angeles and the Portland, OR SIBO support group. There are several online support groups on Yahoo groups and on Facebook. The most well known for being a “good” support group, according to the article in #4 below in “informational resources”, is here: https://www.facebook.com/groups/470628319710443/

11) Links to other organizations and websites and additional info:

A) https://sibocenter.com/2016/02/resources/

B) http://www.Siboinfo.com

C) https://cemoodle.nunm.edu/

12) Personal Story for Someone to Connect with: I have had GI problems for many years and after 2002, when I was in a “catastrophic” motor vehicle accident, they increased. I had tried about 4 different GI Dr’s, but none of them could figure out what was wrong with me exactly.

They kept telling me it was “IBS”, but I knew it was something much more and different from that. IBS is enough to deal with and a horrible problem, but I was having even more serious issues. I finally found a wonderful GI Dr in Michigan. He did some tests that the others had not done. One of the tests was called a “Hydrogen Breath test” and the other was a digestive test for Gastroparesis. It turns out that I have both the SIBO and the Gastroparesis, along with Chronic Erosive Gastritis. I felt bloated and looked a few months pregnant and was having a lower abdomen burning sensation. Now I take monthly antibiotics, or pretty much monthly. I have to rotate with 3 different kinds of Antibiotics because they don’t work well if you become immune to the same one often. I stuck it out and did not give up until I found a Dr. Who would actually listen to me and not dismiss my issues, because I have so many and because I’m a “complicated case. Now I try to eat a probiotic yogurt daily and I cannot take the “Allign” due to a heart problem called “Long QT syndrome”, as it interferes with that. But I do have to take the antibiotics and I have found some relief with online and Facebook support groups for general pain issues and now one for SIBO too. I have listed everything for you above or below. I wrote an article that I have posted above for you, in the National Pain Report last year. When people commented, I was amazed at how many people had the same symptoms and no relief. Many people told me that they printed out the article and took it to their GI or PC Dr’s, and they were tested with the simple Breath test. They have also found some relief and for that I am extremely happy. If you have any questions, please don’t hesitate to ask?

13). Graphics:

A). There are some YouTube videos here:

1: Youtube video: On SIBO from Gastroenterologists : (Digestive disease week 2012)

2: Youtube video: Info about Gut Bacteria & SIBO

INFORMATIONAL RESOURCES:

1) Information on SIBO

2) also from a handout from GI Dr’s office in MI, called “Overview-SIBO-Small Intestine Bacterial Overgrowth” (the handout was found at: EE Website : Brochure about SIBO

3) IBS & SIBO INFO

4) Start a SIBO Support Group

5) Small Intestine Bacterial Overgrowth, the case of the perpetual patient : The case of the perpetual patient