my dr wanted me to eat liver but i cant get myself to eat it smells bad to me... — Christian Lyme Disease Support

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  • Praying

  • There are liquid iron supplements that I take and they do not cause me any issues.

  • I take dessicated liver from Radiant Life.

x — Costochondritis is a pain in the chest... literally

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  • Nothing wrong with that :) at least gives peace of mind x

  • I had an upper GI said I had mild gastritis but then didn't do anything more but I do think it flares up & effects the costo as I have had similar symptoms during both bouts of it now. It's great you've had your heart ruled out. Although it still is scary when the pain kicks in esp with fibro as I usually get shoulder & slight jaw pain sometimes. Started doing breathing meditation to calm myself down xxx

  • Still got the pain on left side but to a lesser degree..but I still cannot lay on my left as feels like everything is being crushed and hurts..going to ring the hospital tomorrow as got the colonoscopy on Wednesday and you have to lay on your left side and going to see if can reschedule as I don't want to exacerbate the problem...

    hubby been really good all weekend and I have taken it easy..I know it can take a while for everything to settle down but I wish it would hurry up..

    Hope everyone has had a good weekend..xx

Not Diet related but prefer the opinions in this group Just had first thai... — The Low No Starch Diet for Ankylosing Spondylitis

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  • I would suggest finding someone you trust, a woman who is highly recommended, someone with experience at least treating people with pain and chronic illness, starting with clothes on and keeping clothes on as long as you want, having clear communication and boundaries, always feeling empowered to speak up -- is that helpful?

  • It is ... But .. I know it's all I my head!!

  • Honor that. There's also shiatsu or acupressure where you keep your clothes on. You could start with just chair massage where only your neck and upper back are touched. Be really clear: "Don't touch me lower than right here... " etc. Your body, your choice.

My latest And not sure how if connected I try not to sleep on my stomach but... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Same issue here. I can only sleep like that, with my arms folded under the pillow. My shoulders are a MESS!

  • We got an adjustable bed. It has a zero gravity setting. The vibration by the feet is my favorite function. (I don't like my head vibrating)

  • Maybe. I always fall asleep on my left side, with my pillow wedged between my neck & mattress so that I'm not putting pressure on the left shoulder. My right shoulder is the painful one though and that arm falls asleep most nights. May need to look into a body pillow to stop me from rolling over & to support the right arm/shoulder.

Hi everyone I m new to this group After years of what I now see was denial on... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • I keep & show this too! I'm the 4th person in 3 generations with an aortic aneurysm - like John Ritter. My Mother is the only one - yet who survived an aortic dissection. I'm trying to be the 2nd in my family! Proactive VS. Reactive!

  • Why does it say that X-rays should not be used?

  • Thank you everyone! It has taken my entire life to get dx / seeing the right drs

So odd question and not something I d usually ask of people online who I don t... — Ehlers-Danlos Joint Hypermobility Wisconsin

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  • If help if I was closer!

  • I completely understand your need and wish I had an idea. I know saying I hope you find someone doesn't help, but I sincerely do. Sorry I am not physically capable and don't have anyone to offer.

  • Hi Beth, I would have helped you if I wasn't in a cast. I had my ankle fused 6 weeks ago...I have 4 more weeks with this cast on. I hope & pray you get the help you need....Hugs

Hi there so I m pretty discouraged today My 6 year old with congenital Lyme... — Parents of Children With Lyme Other Tick-borne Diseases

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  • We had her drink

    Lemon water -I tried for once every other day but she didn't like it and Epsom salt baths once a week-have to be careful with those with girls

  • Well if they get yeast in that area it can be irritating

  • Thanks everyone; I have Lyme also and 4 daughters with congenital Lyme. Me and my two oldest are being treated, but I've always hated meds so this has been a tough journey.

I have been off of my antibiotics for almost seven weeks now I was doing great... — Lyme Disease Support and Wellness

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  • can you give more info on the natural iv treatments from greece? are you better again now and would you do the abx iv treatment again? tks

  • Xxxxxxx YzzzzzzFadden I relapsed after both my SOT treatments that are 1 treatment last 6mo each. I had almost no symptoms during each SOT...no abx I only do herbals and alternative IV treatments. SOT is VERY expensive - around $5000 each treatment. When I relapsed after 2 treatments I went back to what is proven to work...IV ABX. I believe the key is tinidazole or Alinia. I am questioning if I used a cyst burster during the SOT if I would of relapsed. I was told you didn't need one, but I think the borrelia still saw it as a threat, as it does any killing agent. I also know I relapsed because I found out I have a primary immune called CVID- chronic variable immunodeficiency. I am now on IVIG treatments to help my immune system.

  • With bloating it could be intestinal parasites. I would do some anti parasitic herbs and see is anything materializes.

Since I ve been dx Ive had memory problems I just got back from the grocery... — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • Finally, add about 6-8 cups of low sodium chicken broth, then bring to a boil and let it cook for about 10 min..until the potatoes are starting to get tender.While it's cooking mix together some milk and flour and whisk it till its smooth...pour it into the soup then let it cook for 5 more min, until it's got a little more body to it

    .Scoop out about half of the soup or up to 2/3 and pour it in your blendet..blend until Smooth then Pour Into The Pot With The Soup And Then The cream1/4 To 1/2 stir it around over low heat...you can add extra salt

    ..do a taste test some like a hint of Cajon spice...parsley and grated cheese and some of that cooked bacon also green onion or a dollop of sour crm. Just anything you want!

  • So prep time 10 min cook time 20 min. 12 servings so. So 6slices of thin bacon cut into 1 inch lpieces,1 whole med onion.dices, 3 whole carrots 3 stalks of celery.6 whole so russet potatoes peeled and diced.8 cups low sodium chicken broth. 3 tabs flour 1 cup of mik. 1

    /

    2 cup cream,1/2 top salt 1 tsp parsley...1 up of grated cheese of your choice.........WHEW..I READY FOR BED NOW!!

  • What i hate is walking into the pantry with a carton of milk in my hand, realizing it and thinking, "What the HELL am I doing in here?!" ... then realizing as I put the milk in the fridge, that I still need it for the cereal I'm preparing to eat, with the pills I need to take, which are on a shelf in the PANTRY! Aargh!

I m going to be brave here This picture was taken this morning This is how my... — Scleroderma Live, Breathe Fight

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  • Aww Lorna big hug it's so very sore xx

  • Xxxxxxx Yzzzzzz

  • Well thank you for this.. my skin isn't "hardening " per se but it seems more like it's molten and is inflamed sometimes like this.. I don't wish this for you or me or anyone but at least I don't feel like I am going crazy...#uncomfortableinmyownskin

I would really appreciate anyone s advice about something — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Now that I think if it... I don't know if that's even an option... Back in 1994 was my first official total dislocation ... Now, after 4 car accidents , and wear and tear... Would that still be an option?

  • im not sure. My ex-husband tore his rotator cuff up playing volleyball and found the physio manipulations really helpful but its so hard to say -- scans are definitely in order ;) sorry your in pain

  • I really feel for you. I have no advice. But some understanding as i have Adhesive Capsulitis ( Frozen shoulder ) a year ago i lost ALL range of movement. Now 1 year on i can get it to shoulder height forward not so high any other way and no behind back movement but it's huge progress for me. The pain for the first 5 months was level 9 or 10, 24/7 with not even 1 min break. Couldn't even sleep It's is a completely debilitating condition. The reason for telling you this is that everything you just said sounds alot like how mine started (except dislocation) and some people do get frozen shoulder after rotator cuff tears. I don't think it's common but something to be aware of. I really hope for your sake you don't get that as well. I'm not saying you will as i imagine there are alot of similarities with shoulder injuries and pain. I hope you heal quickly and can get some relief. Good luck.

A few months ago my doctor and I started watching my Kappas and Lambdas climb... — Amyloidosis Support Forums Inc

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  • always heard that the involved light chain and difference were what to watch EXCEPT when there is a lot of renal involvement.that is when they look at the ratio as important...the way they would look at kidneys would be protein spill and creatinine...and GFR

  • Yup. Protein spill is now at 12K. Creatinine has been climbing around .2mg/dL and is now at 2.45 mg/dL. GFR is now at 27.

  • My dad had few side effects though did get fatigued toward the end of treatment after a year.

okay another question sorry they are fast and furious but so much happened to... — Parents of Children With Lyme Other Tick-borne Diseases

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  • Yes, I will email the pics to him Monday.

  • My son's bartonella rash did not come out till we started treating for lyme. They tend to be irregular where your pic looks like they are all on the same angle which could be from leaning on something or having bed clothes bunched up while sleeping...still it's good to document and see how it changes over time. My son's were on his back and back of arms and they do vary in darkness. They faded with treatment and then returned when we stopped treatment. I hope for her sake she doesn't have bartonella...it has been the hardest of all infections for my son to beat.

  • Thanks MJ, yes, it is weird that they were on same angle..Andrea said it was itchy on her tummy and that is what made me look..and then get the picture. They look to me like a cat scratch...

So far since beginning the protocol I m noticing my arms no longer get tired... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • I wonder whether you could have had some sort of secondary porphyria? Could you have had anything like lead toxicity?

  • That could be possible! I came down with 5 bouts of horrible strep throat around this time the sun rashes started, and we thought me going to school in a mold-infested school room (building was under construction for 1 year) might have contributed. Maybe there's a correlation? As an epilogue to that issue, I ended up having a tonsillectomy at age 26 due to the tonsils being, for lack of medical terms, hugely deformed and just permanently gross. They were never really normal again after all that and would get infected all the time.

  • Your zinc probably crashed with all the stress and toxicity, predisposing you to infections and maybe even heavy metal toxicity.

Hi Glad I found this group and my heart goes out to all of you that are in so... — Osteochondritis Dissecans (OCD) Support

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  • Thanks bro.. I hope for all of us to be fine and without pain

  • Hope you can avoid surgery cuz it sucks lol take it easy and hopefully the boot helps you. Hugs!

  • Over the course of 2 years I was in a boot about 4 different times. my ankle does not get better everytime I am in it. to me it gets a bit worse. the boot is kind of annoying to me. I wish you the best of luck with everything

Hi all — Christian Lyme Disease Support

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  • In 2007 I tested **CDC Positive** and yet our local Infectious Disease Doctor told me I can't possibly have it, because I've never lived in (or near) Lyme Connecticut???

    Don't let the doctors discourage you---find one who will listen--preferably an LLMD.. Praying for you..

  • I have been hearing more stories like ours everyday. I can't believe how many people are suffering like this and so unnecessarily. And I can't believe there is so much room for discretion!

    I am glad you finally found a doctor that would listen to you! My husband and I are on a mission too.

    Is it common to have "flare ups"? Right now I am feeling alright (pain only being about a 4 or 5). And I have been seizure free for a few days, but I keep waiting for the next one!

  • This is how I got diagnosed and started treatment. Hope it goes well

At what point to I go in to the ER. Will they even do anything — Costochondritis is a pain in the chest... literally

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  • I will. I'm still recovering from last night. I'm not sure what I did, but I can't feel cold of ice on my ribs right now. I put another ice pack around my ribs & keep checking to make sure it didn't fall off . . . I'm so broken.

  • i find when im in a flare anxiety rises causing difficulty in swallowing it's all so difficult to relax when pain is so high. I too have GERDwhich doesn't help. Feel better soon. x

  • Thank you.

    I'm not sure if it's GERD. The swallowing issue was because it hurts like hell to swallow anything more than mush. Is that GERD?

    I don't have reflux... I took prilosec for a while, but it did nothing.

Every time my daughter has her labs done every 3 months she is getting back... — Mothering Juvenile Arthritis

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  • Haha Myndi Morrison Fitzgerald!! I'm definitely talking to the doc tomorrow (which will be our first time meeting the new doc. ..Gulp) and I'll let you know what she says

  • We just met with our new rheumatologist. She said she had not heard of any "side effects" from either enbrel or methotrexate leading to any urinary or "vaginal" issues like my daughter. She thinks her "pain" she describes is probably due to having sensitive skin. As for the irregular urinalysis, she is concerned about this happening repeatedly (having white blood cells and some blood) she thinks it could just be due to her sensitive skin and that sloughing off during her urination for the test. But she's keeping an eye on it and if it persists we will have to investigate further. She hadn't heard anything about apples causing any issues and said if it was bladder reflux G would be in pain a lot and now she only periodically complains. So, no real answers, but no concerns. I'm satisfied with her response and will keep a close watch (and keep track) of further symptoms (complaining of pain and redness) and go from there. And, we have no active arthritis - so that's good news!

  • Aaaaah I'm so happy to read this!!! Thank you for letting us know and ....wahoo on no active arthritis!

Hello everyone Its been a while since I ve posted Many of you may remember we... — Christian Lyme Disease Support

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  • So glad to hear you are hanging in there! I will keep praying for you.

  • Prayers and hugs Jessica Conlon

  • Big prayers for you and your little miracle. Rebuke the lyme! All things are possible through christ Lord our Savior and he WILL SPARE YOUR SWEET BABY! In Christ Jesus name I pray, AMEN!

Hi Friends I have a question about something that happened to me last night — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • Rather than second guess what it could be, I would definitely call your doctor and find out from a professional. Take care of yourself and don't take any chances.

  • Wow Kris Maserang. Good read. I'm praying mine was just flexeril as I've gone three weeks without an event. Honestly reading some scared the beloved shit out of me

  • I have had this happen to me a few times over the years. Really scary !

I have a son with arthritis he is 5 He does not have systemic But now his... — Juvenile Idiopathic Arthritis

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  • I live in the springs too :)

  • We need local connections. Happy to talk anytime if you want to.

  • Sadley I got divorced in a small town where my ex's uncle was the sherrif. We ended up doing I have the two younger boys and he has the two older boys. If I fought it it would have been worse for all of us. But my ex has pretty much had nothing to do with the younger boys and I'm the only one who follows through with visitation. I'm going to take him back to court sometime this year and get the older boys cuz my ex is just screwing up. With my 5 year old he doesn't think he has arthritis even though he has even had knee surgery and I had the school begging me to talk to my ex to get my 6 year with ADHD help. So sadley no he doesn't see a rhemie because my ex is an idiot but thankfully my 5 year old has been in remission so he doesn't have an absolute need for a rheumie right now.

I have lupus for sometime now I been hurting so bad since Friday Started off... — Butterflies - Lupus Survival Forum

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  • I live with upper back pain almost everyday. Dr thinks the lupus is causing the lining of the lung to swell. I have to go for MRI but having a tough time getting the approval. I also have fibromyalgia so I know your pain

  • yes praying

  • Thanks everyone

Sorry it s been such a long time since I have chatted with anyone I am... — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • Social Security claims it as a disability they should too. Good luck!!

  • Xxxxxxx Yzzzzzz, I know that Gracie Gean, is a Patient Advocate for RSD. She could give you ideas, to help you with your situation. Best of luck, Becky

  • Praying

Mira turns 1 month tomorrow and has awful awful colic starting late at night — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Thinking probiotic might help because Kari was group B positive and had a uti 2 weeks before Mira was born. She had to take three doses of IV antibiotics and another script after she got out. Mira now has a yeast infection that actually started within a week. So probably more bad bacteria than good in her little system and in Kari's.

  • I had to go to multiple drs to confirm that I already knew about my DD's latch.

  • And her very obvious ties.

Photos from Julie Zaller's post — Mothering Juvenile Arthritis

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  • Oh my gosh, Lisa Penninga! I've not heard of that one. Wow, I'm so sorry.

  • Xxxxxxx Yzzzzzz oh my gosh! That's just horrible!! I struggled with eczema and nursing! Nipples will never be the same! Lol. Hope you are healing.

  • Katheryn Richards you are sooooo true! 10 years later and the scars are still there. Oh the delights of motherhood...