Someone please help me...

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3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/4/2006 12:20 PM (GMT -7)   
I have been to several drs in the past couple months trying to find an answer to what's going wrong with my body.
 
Ok.  My kids came home with the fifth's disease last spring.  I got the adult version of it, Parvovirus b19.  I had the aching joints on and off for several months... kind of ruined the summer for me... but eventually it went away.  OR so I thought. 
 
All fall and winter I had occassional joint pains mostly in my hands and toes.  Nothing symetrical...  Any joint at any time could ache then be fine again .  Most of those "flares" lasted 2-5 days at MOST.  I was calling it a "cold in my joints" because it seemed that it would happen nearly every month or say 50 days when a kid would get a cold from school. 

So, recently, about a month ago, I began to have numbness and tingling in my left side.  Mostly in my two far left fingers and my left leg and some left toes.  Then suddenly, I had a "flare" and this one has lasted for 4 weeks!!!!!!!!!!!!.  Peaked, then went down to nearly nothing.  HOWEVER, it has been accompanied by severe...  read that SEVERE tingling, pins and needles throughout my entire limbs.  That lasted for only 2 days, though.  But it was hell on top of the ongoing joint pain. 
 
So, I went to my regular dr.  He tells me I have ADD and am depressed.  HUH???  I had had blood work done by my GI who I was seeing because my doctor had dxed me with GERD and ASTHMA in January... (both of which I went to specialists for because I didn't agree that I had either of these conditions and the specialists both agreed that I DO NOT have either GERD or ASTHMA) so, I believe my regular dr is not very good at his job.  I think he's annoyed that I went to specialists after his dxes, particularly the asthma which I really argued with him about.  I felt I had a bronchitis issue becasue three of my kids were sick with chest colds but he insisted that asthmatics are the worst at assessing their condition and scared me by saying I was going to end up in the emergency room at 2am some morning unable to breathe.  Seriously, He said that to me exactly. 
 
So, My GI ran some blood work and ultra sounds at my request and they found that I have low iron (never had that before in my life), small red blood cell count, slightly enlarged liver and spleen and my ana was negative. 
 
Here's what I think.  I have an acute Parvovirus infection that hasn't resolved throughout this past year.  I think all my problems are being caused by it.  The fluxuating fatigue, the waxing and waning joint pain, the sudden neuropathy the low iron.... 

Right now, I'm awaiting a parvo test result, an rf, sed and some other testing results. 

Does anyone here have some insight?  Some comprable experience with my situation?  A friend who presented this way?????  I'm so serioulsy tired out from this escapade and the poor medical attention I've received from my first doc.  I have a new appt with a new doc on tuesday and I'm scared of not knowing enough to help myself. 

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/4/2006 4:25 PM (GMT -7)   
I've looked all over this site and don't see any Parvo/R.A. connections listed. I was posting on another site and folks there seem to believe they have had Parvo and then it turned into RA. I'm very confused about my health right now. If anyone has information or personal experience, I'd love to hear it. At this point I'm thinking It's Parvo run amok. But on the other Aching hand, I think.... it's R.A. or lupus or Fibro or Chronic fatigue. Today I was fine ... in the head... then about an hour ago, my eyes felt wonky again, and I began to get that oppressive fatigue that hit me last week. I suddenly feel achy all over my body, my muscles are feeling like I did a triatholon *Not that I've ever done one, but I feel super achey* It's like my body has a mind of it's own these days and it's dictating more and more of my life.
None of my joints swell or turn red. They look normal, but they hurt like hell when it gets going. Right now I'm more stiff and achey than in actual pain. It's so strange to know I'm sick but to have no symptoms that a dr can look at with his eyes and actually confirm. How can I feel so badly but look like myself?

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 6/4/2006 4:38 PM (GMT -7)   
I am curious and don't know what this parvovorus is so I will look it up.

I'm in bed most of the time with hep C and adrenal exhaustion trying to
get off steroids so I have all this time to read these posts.

I want to ask you though:

what kind of flooring do you have in your house.

what type of climate do you live in.

what type of building do you work in.

how old is your house

what do you eat

what was life like before you got sick.

Feel free to ignore all these questions. i'm asking because of
some things I've observed in myself, family and others over the yrs.

bucci

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/4/2006 4:50 PM (GMT -7)   
I am curious and don't know what this parvovorus is so I will look it up.

I'm in bed most of the time with hep C and adrenal exhaustion trying to
get off steroids so I have all this time to read these posts.

I want to ask you though:

what kind of flooring do you have in your house. *** Wood flooring

what type of climate do you live in. *** Southern California

what type of building do you work in. *** my home

how old is your house *** pretty old, but it's not moldy.

what do you eat *** gluten free diet. My son has Celiac Disease. I'm neg for CD and the gene for CD.

what was life like before you got sick. *** Fine. I was exercising and losing weight. I was only about 30 pounds over weight, and was going to finally do it. Then I got parvo. It was awful. Then it seemed to go away, but I'd have "episodes" of joint pain when my immune system was being hit by a cold. This bout has been a nightmare. I considered MS, but I looked up Parvo one night when I was having trouble using a gluegun to help my daughter do a project. It just occured to me that my parvo from a YEAR ago might be doing this to me!!!!

Feel free to ignore all these questions. i'm asking because of
some things I've observed in myself, family and others over the yrs.

*** You don't understand... I welcome ANY help. I'm so sick of being sick. I nearly lost it when my last dr decided I was "depressed".... but then I thought better of it... I figured it I went ballistic he'd have me forcibly commited! hahaha..... It's like, he doesn't believe my joints hurt... he doesn't believe I'm tired... he doesn't believe I feel tacks poking me incessently... he doesn't believe it could be the sudden anemia... .. No, it has to be in my HEAD???!!!! I'm so without hope when a dr who is supposed to be the one helping me totally ignores all my symptoms.  He was sitting there with my results of an enlarged liver, enlarged spleen, anemia, me telling him my joints ache badly, I have tingling, pins and needles, and extreme fatigue that comes and goes... and he tells me it's depression.  I felt like he was being spiteful because I had vehemently argued with him about the asthma dx he'd given me several months earlier.  According to him, the reasonable explanation that my three kids had upper respitory colds had nothing to do with the fact that I was sick.  I was only looking to see if mine had developed into more than a chest cold since I felt pretty lousy.  He decided I  had asthma.  We had a big disagreement about it.  I insisted I would need to consult with a specialist if I were going to accept an asthma dx.  He was so annoyed with me that I felt the contempt.  It was so unprofessional.  But I was right.  The Pulmonologist said I had an acute bronchitis and NOT asthma.  But my dr had me inhaling $300.00 prescriptions of advair for the rest of my life..????  (yes, my insurance covered most of it, but still!  It's all so crazy to think that was my expert medical care!) skull
bucci

Post Edited (3kidsmom) : 6/4/2006 6:16:30 PM (GMT-6)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/4/2006 10:32 PM (GMT -7)   
Hi 3kids -
 
I'm not familiary with adult onset of 5th's disease, but I am familiar with liver and spleen issues. I live in SoCAl myself with 2 kids. I can tell you Mono is going around right now, I know a few people who have it right now. I had an acute case of it 3 years ago with liver and spleen issues. My blood work was all out of range, etc. It took almost a year to get over. The fatigue you describe can be caused by liver issues (mono or otherwise!) RA does cause extreme fatigue, but the liver is worse. It will also cause some of the other complaints you mention - especially a general awful feeling, foggy brain, etc. Your immune system in general can and will be compromised when the liver (and spleen) are acting up. Mono, of course, is the sleep disease anyway - so, if it affects your liver too (doesn't always) it can be a pretty "tiresome' situation - HA. Sorry about the pun, it's late! tongue
 
I have psoriatic arthrisit, after my problems with my liver, I now get 'flares' there as well, doc calls it autoimmune hepatitis. It's awful.  It doesn't help that I've become overweight due to all this. Unfortunately, to answer "do you have RA" is tough, it's not easy to tell by tests alll the time. You might, you might not - but, there is something else OBVIOUSLY going on with you. I have been in the EXACT situation you are in now - being told I'm depressed or crazy and not in torturing pain.
 
So, first and foremost - GET A NEW DOCTOR. Don't waste any more time with someone who refuses to listen or help. A big thing we all learn here at HW is GO WITH YOUR GUT and that YOU ARE YOUR ONLY ADVOCATE, so stick up for yourself and fight when you know something is wrong!
 
Good luck. **
 
 
 


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/4/2006 10:33 PM (GMT -7)   

Oh, and are you on birth control by any chance? I had to stop - it was making my liver worse. You might want to think about changing to a non-hormonal option if you are on one now.

Take care.**


 


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/5/2006 5:21 PM (GMT -7)   
Ok. Bloodwork is all back. Neg for everything including Parvo.. What do I do or think now? Anyone have some advice? Please.

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/5/2006 7:07 PM (GMT -7)   

Did they check for Epstein Barr Virus or Cytomegalo Virus???? Both cause Mono.

Enlarged spleen, enlarged liver (plus high enzymes), fatigue to the point of falling asleep at a blink, VERY low WBC  (can all =)  MONO
 
I have had it TWICE in my life now (two virus's do mean you can get it twice apparently!) If it's acute, like mine was, it will take a very long time to get over it completely. Doesn't mean that IS what you have, but I think it is a very good possibility.
 
The tingles and the numbness - I get that with flares sometimes, the tissues swell up around joints and then I have issues with limbs falling a asleep.  I get the last 2 fingers in my right hand - I wake up painfully numb up my arm. I know there is arthritis in at least one of those fingers, but my husband says he thinks it is carpl tunel, that doesn't explain my foot and leg unless there is a comprable condition for that area.
 
It is possible that the parovirus kicked off a form of RA in your system. You need a new PCP and get a referral to a rheumatologist. Whether you have true RA or something that is temporary due to an illness, medication, or whatnot, you need to have it watched.
**
 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 6/5/2006 7:10 PM (GMT -7)   

Oh, also, this doesn't mean your Parvo theory is wrong - my cousin had some weird disease that was positive in a test, a year and many many meds later, a blood test she was fine and doc said, 'oh, I guess you never had it..."

duhhhhh, what??! What an idiot!

***


 


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/5/2006 9:11 PM (GMT -7)   
Thank you for your responses. Does Mono or the other two viruses you mention, cause joint pain? I appreciate your suggestions. I wrote them down for my dr to consider. I see the new doc tomorrow. I'm in SoCal as well. I know mono is going around my town as well.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 6/5/2006 9:35 PM (GMT -7)   

I'm not sure if Mono actually causes joint pain - but, antibiotics, illness, etc in general CAN.  When you body is run down, I feel, anything can happen.

Also, you mentioned the joint pain you had last year and all thruout the winter, if you have reactive arthritis and/or actual arthritis, you're body will hurt when you are sick, run down, the weather changes, or all of the above....if you ARE sick and HAVE some form of arthritis, then yes, it will affect your joints for sure.

Mono is caused by one of those 2 virus's. I had a very acute case of it. I was hospitalized for enlarged/bruising spleen, over the top liver enzymes (also enlarged) high fever, and dehydration. The PCP sent me to emergency not sure what was wrong, but wanted me to at least get hydrated and my spleen watched - and the idiots there snorted and almost sent me home for having "the flu."

2 more specialists saw me and didn't know what was wrong with me. It wasn't until the infectious disease doctor made his rounds did he test me for EBV and found it to be positive.  I was stuck in there for a week, luckily, I mostly slept. tongue

I wasn't allowed to pick up or hold my 2 babies (2 and 3 at the time) for 5 months. I had a relapse at 8 months.

My point is, you just never know....it may take a few different types of doctors to figure it out.

***


 


yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 6/6/2006 5:03 AM (GMT -7)   
i also had a horrible experience with my daughter when she was in 3rd grade she had been sick from september til december constanly and the doctors kept saying it was a new virus almost every week! she would be sick for like 5-6 days in bed then feel better go to school and right back in bed for days! her doctor kept blowing it off not understanding how sick she was. finally in january, after like 50+ absences from school, i took her to another doctor only to find out she had mono all that time and when we finally understood she got well. it is hard when u trust a doctor to leave and get advice from another especially the first time you do it. now it is easier when u have had an experience to find another opinion and get positive results..... good luck and get the mono titer blood test, plus the others..... that might be the solution? good luck *~yalinda

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/6/2006 8:27 AM (GMT -7)   
I wonder.... I wonder if it's really the parvo even though it came back neg. I mean, that just makes the most sense. I wonder if I get the immunoglobulin treatment, if that will help. Anyone have advice on this?  I KNOW FOR SURE only... that I had the parvo and it caused joint pain for three months.  Then I got "better" but had flare ups of pain when getting ill or kids were getting ill even if I didn't get a full blown cold.  And the past month was very stressfull at school with them.  Lots of parent activities and crap that I felt overwhelmed with doing.  I think it's the parvo.  Or from your objective pov, do I sound desparate? confused

Zots
Veteran Member


Date Joined Jun 2005
Total Posts : 1635
   Posted 6/6/2006 12:56 PM (GMT -7)   
im thinking autoimmune. you can have an autoimmune disease with a negative ana. have you seen a rheumatologist yet?
What a mighty God we serve!  :)
 
UCTD; Hashimoto's; Fibromyalgia; Chronic Fatigue Syndrome; PSVT; Atrial Fibrilation; Liver Dysfunction


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/6/2006 5:16 PM (GMT -7)   
Well my new doctor is thinking Lyme disease.... nevermind the fact that I live in SoCal and had parvo last spring and continuing symptoms since... I guess her ego couldn't survive my telling her I think it's parvo. I see a rheumatologist on Thursday. I'm sure it won't do me any good. This whole thing is ridiculous. They could decide I have anything auto immune and just go with it. I should go to my appt on thurs. and just sit there and wait silently while she decides what autoimmune disease to assign me with my negative test results for everything.

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 6/8/2006 3:26 PM (GMT -7)   
hey! we got someone w/ 5th's disease kidsmom! we'll bump it up to the top of the forum. look for it. very glad someone found your post.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/8/2006 7:18 PM (GMT -7)   
Hi, don't think it's been mentioned yet, but when you see your docotro, request that they order X-Rays and a bone scan. They probably won't do the bone scan automatically unless you mention it. But they can "see" a lot more disease activity on joints with a bone scan. Most helpful in convincing doctors you aren't insane when your joint problems haven't yet caused enough damage to be visible on X-Rays.

I know with me, when I catch a cold or the flu or something, my immune system goes crazy. It fights of the bacteria or virus pretty good, but it also might think my joints or my eyes or anything else it's annoyed with is a bacteria or a virus and goes crazy on it as well. It's just sort of a random theory I have about how my disease process works and not intended as a diagnosis of what you're going through, but it sounds kinda similar. Perhaps your body, as a result of parvo, or for whatever reason, gets a little mental when you are exposed to cold bacteria or viruses and starts killing it as well as attacking things it shouldn't be. Something to think about anyway, but don't give up on getting the answers you need! Good luck!
-SLE, Psoriatic Arthritis & Rheumatoid Arthritis

-Current meds: Plaquenil (200mg, twice per day), Sulfasalazine (500mg 3 times daily) NSAID du jour (twice daily)


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/8/2006 9:16 PM (GMT -7)   
I saw my Rheumatologist today. She thinks that what I have is a viral infection and not R.A. She said that despite the neg labs for Parvo, that's what it is. She said they only ran one test for the parvo and there's another one and that it would likely be positive. She also agreed with me that my doctor wasn't giving me very good help. She thinks the virus is in my system pretty good and agreed to try antibiotic therapy on me if that was what I decided to do. In the meantime, she thinks I need to do all I can to strenghten my immune system which is obviously weakened for whatever reason. I didn't ask her about the immunoglobulin therapy for persistent parvo infection because I have an appt with a rheumatologist who specializes in antibiotic therapy very soon and I think he's a better person to ask about the immunoglobulin treatment. I also have my lousy new primary doc ordering me the second test for parvo to see if it comes back positive. Yesterday, I got her to write me up labs for anti-ccp and Crp? and mono ... Stuff folks on chat boards told me to have tested. People on line are really actually smarter thanthe average primary care dr. It's so sad.

elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 6/9/2006 4:16 AM (GMT -7)   

Glad to hear that you're finally getting some answers and good help.  I do agree with you in that I learn more online from other people with similar diseases/viruses than my primary actually knows.  And that scares me because I'm not a doctor and I do not have a medical background!  But the healing well forums have a plethora of knowledgeable people, and quite a few (like Erin) who do have a medical background.  Keep coming back and let us know how the parvovirus stuff works out.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/9/2006 8:40 AM (GMT -7)   
about antibiotic therapy: if a person has a virus, wouldn't it be fit to give antivirals? antivirals are for viruses and antibiotics are for bacterias.
would it be antivirals that you would be recieving?

just asking. curious as to how your doctor's treatment plan is set up.
take care.

:)
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 6/9/2006 11:15 PM (GMT -7)   
Great question. But all I know is that there seems to be some remarkable success with antibiotic therapy! The Mayo clinic and the NIH recognize it as a true therapy. Here is a link to the dr I'm going to go see...
http://www.thearthritiscenter.com/about_dr_franco.htm

Don't just dismiss this idea. I asked THREE primary docs about it and each dismissed it with disgust. BUT, my Rheumatologist said it's a very real option and offered to bgin me on treatments. I want to wait to see this guy, Dr. Franco because I've heard TONS of great things about him from posters on a yahoo site. Lots of people emailed me to tell me they USED to be his patient, but had since moved and that he's awesome. AND lots emailed me to tell me they were in complete remission since beginning antibiotic therapy and that it was a Godsend despite the "looks" they got when they decided to go for it. Think about the drugs they give R.A. patients... what could antibiotic therapy hurt!!!????

missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 6/10/2006 2:18 PM (GMT -7)   
just to throw my  two centes in but did you ever get bit by a tick could it be lymes?
sometimes this can  stay in your system for years and then you can have an eppisode of some kind start it up.
i am one of these odd ducks, i test neg for everytihng until it is so out of control with my body at the last minute something will show up, but i  too, test out neg for many of the same things you tested for and i am not crazy i know i have PA, possilby AS, now luschka joint disease as confired by a CT scan last week, well if it shows up now then i musta had it a year ago, so why didnt it show  up then?>
i dont know. my body is  changing quickly and i have lots of DDD going on. it  seems to 'morph' into something wierd.
 
i would go get another doc and once you find someone check them out on ratemd.com
see if they are on there and if so read up on them or check the ddoc outo n your local/state boards. you can do this on ratemd.com
good luck i wish i had more info for you to help you out but the docs here in fl are so bad that i just cant count on them to be accurate with anything about myself!! sad sad sad
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/14/2006 3:39 PM (GMT -7)   
actually, decades ago...the 1st treatments for RA was in fact antibiotics.
my neurologist who treated the Lymes Disease i had was also trying to treat the RA. i always felt a difference in joint pain on stronger antibiotics. (this is where the RA came from...having untreated Lymes for about 10 years, set of an array of AI disorders).
best wishes.
erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 6/14/2006 3:48 PM (GMT -7)   
Parvo is a virus dogs & cats get it is fatal if not caught in time.......Never heard ofa person getting it..........
SnowyLynne


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/14/2006 4:07 PM (GMT -7)   
Hey SnowyLynne - you're right Parvo is normally a disease dogs and cats get and yes, it can be fatal for them... however, there is a Human Parvo Virus, it's actually called ParvoVirus B19 or 5th Disease... you can read about it here... It's pretty interesting stuff... And like with any other virus, if left untreated, can lead to RA... just like Lymes...

Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

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