Doctor who treats overall inflammation? Does such a thing exist?

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cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/27/2012 2:08 PM (GMT -6)   
Is there a doctor that specializes in inflammation and/or the way inflammation manifests itself throughout the body?

I'm asking because I've been experiencing a lot of different manifestations of inflammation all over - acne, eczema, scleritis, and the obvious colitis, plus other random aches and pains that may or may not be related. I need a doctor that will try to manage me as a whole - not just the eye doctor, the derm, the gastro, etc. Does that make sense? Please tell me there's someone I can go to who understands the connectivity between all this...
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

Post Edited (cherchezlafemme) : 3/27/2012 1:11:22 PM (GMT-6)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17847
   Posted 3/27/2012 2:13 PM (GMT -6)   
Nope, doesn't work that way....different inflammation means different "specialist", even though many of the different inflammation issues can stem from one thing, like IBD for example, but you still have to see different specialists for treatment; GI for inflammation of the intestines, dermi for inflammation of your skin, etc.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1917
   Posted 3/27/2012 2:17 PM (GMT -6)   
Actually yes, there are people out there who get to the root of the problem rather than just jump to joy for prescription drugs ability to mask these issues, they are called naturopathic doctors (ND's). Some who specialize in naturopathy. From the start of my colitis I worked with a medical doctor and a naturopathic doctor (who provided me the herbs, supplements and advice) to get me through these last 7 months. Anything is possible.

cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/27/2012 2:30 PM (GMT -6)   
Ugh! How can that be??? Barely any of my docs seems to be able to look outside of tunnel vision and see how this is all connected. The few doctors that understand there's a connection between it all just tell me to "get the inflammation under control." Well, no crap sherlock, but HOW?!? I don't even know why there's inflammation in the first place. I am so beyond frustrated right now. All of these doctors prescribe meds that cause one or another side effect and somehow, my symptoms for these various issues are not getting better! ARGH!
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6790
   Posted 3/27/2012 2:35 PM (GMT -6)   
An immunologist might be of help.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Used prednisone (starting dose 40 mg) to gain remission, tapered off easily

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 2924
   Posted 3/27/2012 2:48 PM (GMT -6)   
I would try a LYME'S DOCTOR. Someone suggested YEARS ago and I blew it off, saying I don't have lyme's never saw a tick, never had a bullseyes rash, well it came back positive through a very reputable company Igenix and I got on antibiotics right away for two years. I didn't improve my UC
but my panic attacks went away, my nervousness went away, my tiredness went mostly away, I think everyone should be checked for it. I live in Michigan, not in Connecticut where it orginated, ticks are everywhere! I started out having panic attacks, stiff neck, tired all the time, mood swings you name it, colds all the time, blisters on my lips, achy flu like symptoms all the time too. Just a thought!
UC since '05, now asacol 9 pills.

aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 3/27/2012 2:58 PM (GMT -6)   
I think we are in a similar situation, though I am lucky enough to have a great GI who looks at my symptoms as a whole.

My GI feels that my inflammation(which varies from regular old colitis to sinus swelling to fevers to mouth sores to body sores) is all related to my IBD, so I do go to him first. If your GI doesn't get that IBD causes inflammatory issues other that straight colitis, you might want to shop around a bit, I mean a simple google search tells you that some of your other issues could be related to IBD. I have seen several drs recently and they all seemed to get that all of this could be related to IBD, maybe I am lucky that they are on the ball, but you should definitely expect better care.

Also, all my drs are at the same hospital--this was extremely helpful recently when I was hospitalized, as they could compare test results and actually talk to each other about my treatment. What docs do you see besides GI and derm?

I am surprised you are not on any other meds than 5-ASA's if you are flaring. And what's with the drs telling YOU to get the inflammation under control? Um, isn't that their job? Weird.
33 years old
Left side colitis/possible Crohn's colitis since 2004
Currently on Asacol, Cimzia
Imuran failed, can't take 6mp, Humira failed
Mesalamine enemas as needed
Vitamin D, VSL#3, fish oil, calcium, magnesium, multivitamin, slippery elm bark powder tea and turmeric
Diagnosed with many food intolerances including dairy, oats, lime, squash, etc.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 2924
   Posted 3/27/2012 3:05 PM (GMT -6)   
The few things that helped me was L glutamin and saccharomyces boulardi probiotics like Florastor but now I'm trying Flora Balance to get rid of yeast
UC since '05, now asacol 9 pills.

Dunia77
Regular Member


Date Joined May 2011
Total Posts : 149
   Posted 3/27/2012 3:10 PM (GMT -6)   
therearemiracles said...
I would try a LYME'S DOCTOR.


I thought about the same. It may sound scarry but def, I'd see a Lyme specialist.
UC diagnosed 2005
Without major flare ups until April 2011 (over two years without ANY meds)
Currently: Lialda 3 tabs/day
OTC: Multivitamin, VSL#3 DS + Jarro Dophilus AF, biotin 5000mcg daily, Slippery Elm Bark capsules, fiber

cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/27/2012 4:06 PM (GMT -6)   
Thanks for your input everyone. I'm happy for the feedback and suggestions.

To the folks who brought up lyme disease...can't I go to any general doctor and request a blood test (assuming that's how it's tested - no clue really) for this? Does it really need to be a specialist?

miracles - I haven't tried L glutamine, but I've tried Florastor to no avail. Also tried Mutaflor and Culturelle and didn't notice any difference.

aqua - you can consider yourself VERY lucky to have forward thinking, broader picture docs. I see an ob/gyn along with the derm for my acne issues - they both have different ideas as to what will work, so far nothing. I've also started physical therapy with an orthoped to treat pain in my hip due to inflammation in my hip joint. It's crazy - I really feel like I'm falling apart and things keep popping up one after the other. And yup, just on the ASAs which aren't doing much, though in all fairness I've gotten better. 1-2 toilet trips a day with no blood or mucous, but too soft and separated. Used to pass some beauties, but that hasn't happened since early November. The docs seem to think that I can flip a switch and the inflammation will go away.

stereo and fruitgal - I will look into these. Haven't gone this route before - can't hurt to try.
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 1841
   Posted 3/27/2012 4:43 PM (GMT -6)   
Actually the way you want to get treatment, thats a basic principle of Indian traditional medicinal system, Ayurveda. If you manage to find a good Ayurvedic practitioner here in the US, you could give a try. The problem with nowadays practitioners is, they are not really that well educated and the herbal medications they need are not of good quality anymore. Plus, you will have tons of dietary restrictions if you can do that and it will take LOT of time to see any difference.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 240mg for migraine, Migraine episode now at least twice a month,
Ibuprofen 400mg is the only solution (but leads to bleeding). Looking for alternatives.

cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/27/2012 4:56 PM (GMT -6)   
Deltaforce - I'm in Vienna and just found this place online: http://www.ayurkayaglobal.com/general/contactus.php. No idea if they're any good or not. Just sent them an email asking for recommendations of local practitioners. I haven't tried Ayurveda before - I don't know squat about it. How do I know if someone's any good/"properly" educated or not?
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2171
   Posted 3/27/2012 5:04 PM (GMT -6)   
There are doctors who treat overall inflammation and not just symptoms of disease. It is called Functional Medicine and is becoming more and more popular.

www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html
Male/60 DX ulcerative colitis Feb08, or maybe Crohn's colitis.
No Meds, allergic to Mesalamine. Remission since Mar10. Psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD.

Watch gluten, lots of fruit & vegetables (but no plums or kale), no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, high gamma E, phos choline, magnesium, boswellia, curcumin, glutamine.
Nature created all of the locks, therefore Nature has all of the keys

cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/27/2012 5:14 PM (GMT -6)   
babe - good article. this sounds EXACTLY like what i'm looking for...
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 3/27/2012 8:11 PM (GMT -6)   
I also think you might get what you seek from a Naturopathic doctor.
49 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade).
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1917
   Posted 3/27/2012 8:58 PM (GMT -6)   
cherchezlafemme said...
Ugh! How can that be??? Barely any of my docs seems to be able to look outside of tunnel vision and see how this is all connected. The few doctors that understand there's a connection between it all just tell me to "get the inflammation under control." Well, no crap sherlock, but HOW?!? I don't even know why there's inflammation in the first place. I am so beyond frustrated right now. All of these doctors prescribe meds that cause one or another side effect and somehow, my symptoms for these various issues are not getting better! ARGH!


Yep, unfortunately thats how typical westernized docs are trained to treat us. Check out this website and maybe do a search for a Naturopathic Doctor in your area. Like I said, I feel like I couldn't have gotten through this without my ND. One tip is that they (ND's) should NEVER EVER be pushing products on you, yes everything is a little pricy but thats because quality counts and some things will sound absolutely ridiculous, but going back to the basics is what is necessary to treat most issues. If you find a doctor thats suddenly encouraging you to spend loads and loads of money or whatever, you may have accidentally stumbled upon an alternative doc (chiropractor or acupuncturist). Do a little bit of research because, there are people out there who want to help you in the way you've expressed.

I will say from personal experience that you have to go in with an open mind with treatment options. When you go to naturopathic doctor they are going to spend a little more time with you, asking you what your diet is like, what you do on the daily, past history and symptoms, they might even want to do a few specific tests or blood work. However, going this route can be a longer process, than most conventional ways, because the body takes a tremendous amount of time for healing to happen through natural means rather than medicinal means, but you'll feel at ease knowing you are actually getting to the root of your problems. They will be able to prescribe prescription medication just like any doctors and would only do so if absolutely necessary. My ND actually encouraged me to get on asacol when I first saw her, she said there is "always a time and place to use conventional medicine", to get things under control.

Post Edited (stereofidelic89) : 3/27/2012 8:04:05 PM (GMT-6)


Luv2Jump
Regular Member


Date Joined Nov 2010
Total Posts : 122
   Posted 3/27/2012 9:29 PM (GMT -6)   

Great article, thanks for sharing.
Diagnosed UP July 2010
Currently taking generic Colazal
Just finished a course of Prednisone and Cortenemas
Salofalk suppositories and enemas made symptoms worse
Fecal Transplant - 25 implants, worked great while implanting but symptoms came back after stopping
Gluten-free for four months (made no difference)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9989
   Posted 3/27/2012 10:15 PM (GMT -6)   
I saw an immunologist and he didn't offer any options at all. He pretty much told me there was nothing he could do. I am interested in seeing a rheumotologist but I've had no time lately. I wouldn't see an ND unless I could get it covered by insurance. I am too poor to pay out of pocket for anything. Currently I have no insurance. I walk around hoping nothing happens. A flare up would be devestating.
 
I have always been interested in seeing an endocronologist as well. I have suffered from acne since I was young. I know it's hormonal.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

cherchezlafemme
Regular Member


Date Joined Aug 2010
Total Posts : 213
   Posted 3/28/2012 12:30 AM (GMT -6)   
Hey notsosickly, that's a shame the immunologist wasn't able to help. I've seen a couple endocrinologists to get a panel of hormone tests done (also because of acne) and for the most part, things showed up okay. On the one hand that's good, on the other, it didn't leave much in the way of treatment options. One suggested the pill (ortho tri) to see if that would help and it worked to clear the minor acne that popped up on my chest occasionally and it also helped regulate my period which, for the past year or so has been all over the place (seems I might have mild PCOS). However, it hasn't really done wonders for my facial acne. I've been on it for 3 months and the doc has switched me to Dianette (like Diane / Diane 35). Set to start the pac on Sat but I'm kind of terrified (paranoid about pill side effects generally, plus this one has an even higher risk). I'm seeing a private dermatologist this evening and will try my best to get a prescription for spiro/aldactone. It's used off label in the states for acne and apparently works wonders. Here, they don't prescribe it at all for that so I'm not hopeful I'll be able to get it. Anyhoo, it's something you may want to consider if you don't have other reasons for being on birth control besides acne...
30, Female

Ulcerative Proctitis diagnosed 1999
Ulcerative Colitis diagnosed 2002 - had a few flares b/w then and now

Past meds: Asacol, Pentasa, Rowasa, Colazal, Prednisone, Flagyl, 6MP, etc...
Currently on: Mesagran (mesalamine) granules 4g p/day (2AM/2PM), Salofalk enema 4g 1 p/day

Started to flare again in November 2011. Sigh.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 1841
   Posted 3/28/2012 5:34 AM (GMT -6)   
cherchezlafemme said...
Deltaforce - I'm in Vienna and just found this place online: http://www.ayurkayaglobal.com/general/contactus.php. No idea if they're any good or not. Just sent them an email asking for recommendations of local practitioners. I haven't tried Ayurveda before - I don't know squat about it. How do I know if someone's any good/"properly" educated or not?


Frankly, you won't. Nowadays, its becoming same money making business as regular medicine. Being Indian, I failed to find one and finally gave up. Plus the time it takes to see any results and the restrictions they put on you is something difficult for me to do at this moment. All I can say is, if its cost effective, give a try for a year or so and if you do any results continue, else discontinue.

@Babe,
A part of the article you linked to is really good but when he goes in a treatment, he failed to impress me. DS has diagnosis of Autism and I read more stuff for him than myself. The 'therapy' that he followed is pretty much what is followed by DAN! (Defeat Autism Now! practitioners) and I have poked tons of holes in their theory, not to seek their services for my son, when you will find loads of parents swear by the treatment. I came across this little girl's video somewhere else as well but I would like to disregard her case as an isolated case (not that I want a clinical trial but it can not become a rule of thumb for treating all autoimmune disorders).
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 240mg for migraine, Migraine episode now at least twice a month,
Ibuprofen 400mg is the only solution (but leads to bleeding). Looking for alternatives.

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 3/28/2012 9:40 AM (GMT -6)   
FYI Marc Hyman and his colleagues charge about $12000 for an appointment and testing. They also say that their success rate with UC is about 70%, which seems to be the figure most naturopaths will give you for their success rate. Large enough to be enticing but with a high enough failure rate for them to be safe. I have no doubt that people respond to these treatments, just as many posters here have responded to simply removing gluten from their diet. It might be worth trying some diet modification and supplements at home before paying a functional med doc. I went to one in my city and he basically told me I'd done everything that he recommends and he couldn't help me. The principals are - remove gluten/dairy/sugar from your diet (they will recommend a type of food sensitivity test to identify other foods you might be sensitive to). Use antiviral/bacterial herbs, maybe use antifungal herbs or even meds, repopulate your gut flora, heal your gut with things like slippery elm/l glutamine, perhaps check your endocrine system and adrenals and offer some adrenal support. You can do this research and start making some changes on your own and see if you respond.
I'd also suggest something like traditional chinese medicine. We've tried five practitioners with varying degrees of success but not enough to put my daughter into remission. I know this has worked for many though.
Good luck!

AZYooper
Veteran Member


Date Joined Mar 2010
Total Posts : 1071
   Posted 3/28/2012 11:26 AM (GMT -6)   
There is also integrative medicine ie Dr. Weil integrativemedicine.arizona.edu/

As others have mentioned, these types of programs seem to be very expensive and questionably so.

Going to Mayo or another medical center like it might be less expensive and more likely to be insurance covered. You won't see one guy but group of specialists working together.

There really needs to be a new specialty that deals with inflammation/ auto immune and more research.

I went to GI that was into becoming a whole person Guru for IBD, Celiac and Crohns. He was quite simply deluded($$$$$) or a crook.

potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 3/28/2012 1:09 PM (GMT -6)   
In addition to AZY's suggestion, there are movements in the US to incorporate integrative medicine, ala Dr. Weil, which approaches the whole person. 
 
There is a website where you can find one of these physicians:  http://www.abihm.org/   There is a physician locater on the site.  These are medical doctors who use integrative medicine.   
 
There is also a foundation working toward incorporating integrative approaches at http://www.bravewell.org/  They have several centers listed (some universities) who practice integrative medicine. 
 
So there is a movement in the US mainstream traditional medicine toward looking at other ways of treatment.  It's the cause I support and think that a whole person approach is what most of us IBD folks need. 
 
Unfortunately, I'm locked into an HMO, which is doing the best they can, I guess, but trying other alternative healers (massage, chiropractor, acupuncture) has cost a fortune. 
 
Our healthcare system is just a bleeping mess.
 
Good luck to you! 
 

vb4girl
Regular Member


Date Joined Jul 2006
Total Posts : 90
   Posted 3/28/2012 1:36 PM (GMT -6)   
You MUST look outside of the mess which is called our "healthcare" system to get true healing! Each "specialist" just prescribes meds and looks to hide the symptoms and not get to the root cause. Such practitioners DO exist and if they don't bring you back to the foods that nourish or don't nourish our bodies, then they are not getting to the root cause!

cherchezlafemme, I can personally recommend Dr. Cowan. He is in CA but works with patients by phone (I am in MD so I work with him by phone also). I have been working with him for over a year and he is guiding me to my healing of inflammation. First and foremost is returning to a traditional way of eating and REAL foods. That is the first step in healing the body from inflammation. That's also the only way for our bodies to respond to natural therapeutics/herbs etc. They must have the support from real foods. Feel free to email if you'd like more info!
DX Ulcerative Colitis 1999. Previously on Asacol, Prednisone, 6mp (Mercaptopurine), and Remicade. Healed with the GAPS diet and OFF ALL PREscriptION MEDS!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 3/28/2012 2:10 PM (GMT -6)   
The Naturopathic doc in my community charges $300 for the first visit, and $85 for each visit after. He sent me to my regular doc for a traditional blood screen so it would be covered by insurance. But food sensitivity testing was done, too, and I think it was about $250. There was more accurate cellular testing he told me about, but it was something like $1200 and he did not pressure me to have it done but just let me know about it. He sold me some probiotics which were strong. Also B-12 shots at $30 a pop I think. He didn't encourage me to stop taking asacol, but we agreed it was necessary to get off the prednisone (again). Eventually I decided he had done everything there was to be done for me. I have several friends who have gone to him for various ailments, and according to him it always came down to diet and that was so often true.

The food sensitivity testing made the whole experience worthwhile. Avoiding food identified in the testing makes a big difference in how I feel (bloat, mostly). Ultimately Remicade was what I needed, it has been the magic bullet for me.
49 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade).
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow
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