need some advice last week they gave me a medalert pendant to wear at home like... — Christian Lyme Disease Support

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  • that is why i am asking our group as i have heard alittle about electronic stuff so the medalert and the spinal cord stimulator i believe are electrionically operated that is why i am so concerned but have waited over 5 yrs for some relief (so tired of being home and only relief is my bed) but am so perplexed because of reading some info you have provided, but having such low income, i do not even treat my LD except for med's from doc but do detox alittle;;but am disabled and i now medicare and medicaid so i do get meds and stuff paid for but know the effects of '''regular''' medicine;;i have suffered greatly from mishappens in the past and am so leary;;i only see my pain management dr. once month and diabetes every 3 months other wise no doctors;;i will look up the info you left;;thanks

  • Agree on the emfs. Since getting Lyme, I am sensative. I cant keep my phone in the bedroom at night or i wake up with a headache. I also turn off Wi-Fi and breakers at night. I dont know how a spinal cord stimulator works, but it might be worth mentioning that you are EMF sensative to see what they say.

  • Same here!

I ordered LDN from a compounding pharmacy in 1 5 tablets and they sent me... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • No and why do you care? It's close enough and it's not going to kill me and be too off.. I skip doses too, is that so bad too? (Rhetorical question).. This isn't an exact thing and what works for one doesn't for another. You act like I'm playing g around w cyanide or something.

  • Xxxxxxx Yzzzzzz response is acknowledged.

  • Lol

A little freaked out I woke up this morning and brushed my teeth to find my... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Yeah it's time for a dentist for sure.

  • I did but a water pik just haven't used it yet. Best get that out and make an appointment. Losing teeth is NOT okay

  • I just told my husband how bad it is. That means he will be on my case until I go. So now I have to make the appointment

Awful sinus infection and vertigo also low grade fever and chills the last few... — Lyme Disease Support and Wellness

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  • I get terrible bacterial sinus infections. I also took oregano oil 4x a day... By week 3 I had experienced horrible herx with fever. Are you sure you are not herxing?

  • Possibly, Kelly! I just started taking activated charcoal for the Herxing this afternoon. A friend who works at the local health food stores for suggested an olive leaf nasal spray. I may go get that tomorrow out of desperation.

    I've also been using the Netty pot, taking coconut oil and putting apple cider vinegar in my water several times a day. No dairy... I have also been insatiably thirsty all day! I got some coconut water and I do feel a little bit better.

  • I hope you feel better, I know first hand how terrible sinus infections are. I have been struggling with fevers pretty much everyday since I started my antibiotics. It's tough to see light at the end of the tunnel when you aren't feeling well but try to listen to those who have been through it, now symptom free and doing well

I am reposting this in hopes to hear more input from you all — Christian Lyme Disease Support

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  • Yea. Before I was diagnosed I had X-rays done and the doctors could find nothing. 2 years later I diagnosed myself because I took the igenex's test. Then I showed the positive results to the infectious disease doc and took her two tier Lyme test which came back negative. By the way I took two tier test earlier( which was also came back negative) She still wouldn't say I have Lyme by the igenex's test. Infectious disease docs go by the protocol. Luckily I found an md who became Lyme literate and now is treating me. Lyme will cause all kinds of weird pains and sensations.

  • I spent over $3000 before I was properly diagnosed smdh

Hey guys hope everyone had a wonderful weekend I just wanted to know if anyone... — Butterflies - Lupus Survival Forum

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  • Yeah I forgot about my hands and feet. My hands have eczema like spots on them and my feet feel like bricks. Have a steroid cream for my hands and moisturize hands and feet religiously but I haven't seen any results yet.

  • I bite the skin around my nails. I also get bruises under the areas where it feels like sunburn.

  • Exactly!!

Does anyone get a kind of amnesia about how to help yourself when you are... — Reflex Sympathetic Dystrophy- Need a friend who has R.S.D

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  • Yep. I also forget just how bad flare ups can be until I'm slammed with one. When I have a long stretch (rare these days) of low pain days. I begin to think perhaps I over exaggerate just how bad RSD is in my mind. Then bam I'm hit with a bad flare and quickly reminded that I do not exaggerate the pain, if anything I under state it even in my own mind. Which does leave me unprepared to handle bad flare ups no matter how prepared I fool myself into thinking I am. Sure, I got the meds, the topicals, the heating pad, the soaking salts with essential oils to soothe and relax the muscles, got my games, adult coloring books, Kindle, internet, comfort food. All the arsenal and then some to handle a bad flare. Except the true reality of just how bad they can be, especially when it goes on and on and on. Like some sadistic game of Chinese water torture but, with amplified pain. I think it's the human bodies natural defense to quickly forget just how bad pain feels at high levels as soon as it returns to a lower more tolerable level.

    I know some of us women would never reproduce again (me) if we fully remembered just how painful child birth was the first time. Human beings are also naturally prone to denial, otherwise we'd go insane. If we constantly faced all the horrors that can and do occur on a daily basis. To survive we quickly turn our attention to the pleasant aspects of life and knowingly deny unpleasantness. As we can only handle the unpleasantness/horrors in small dosages. Otherwise we'd all have fractured personalities/minds like Sybil (referring to book or movie).

  • So glad to hear someone else say this. I feel like such a wimp when I have a bad day after a stretch of ok days!

  • Ha wimp! RSD suffer wimp is an oxymoron. That's like saying Superman is weak. All RSDers are the furthest thing from being a wimp. The mere fact that you choose to endure another day is a testament to just how strong you are.

    Like yourself I often feel I'm a wimp or should be stronger, push harder, do more. Then I come to my senses and realize I'm only human and not a Superhero. I allow myself to be a baby at times, I have pity parties, I cry and grieve all this disease has taken and denied me. I even scream some profanities at my RSD. Then I regroup and continue on with my life.

    As my husband says "You're a grown up, you're allowed to do whatever you want! So long as it doesn't harm or impose on anyone else. If you want to eat your dessert before your dinner then you go right ahead. If you want to roll in the mud naked, (kind of wonder where his mind was at with that. Lol) climb a tree, dance on your roof, etc. Have a blast! Most of us wished our childhood away wanting to be grown ups. So we could do anything we wanted to." I loved his logic it was/is so spot on!

Well lasts nights and todays pain is getting progressively worse so much so I... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • I'll try that Halina thank you x

  • Did you ever hear back from Drs office? Wishing you rest, I have issues with feet and sometimes I just have to stay off and sleep. It's hard mentally for me!

  • thanks Rebecca yes I did I was given an appointment for yesterday. I saw the doctor and he is sending me for an MRI before I have an epidural next week so hopefully I will get some relief

Did you Cusack Deborah ever come across this in your research Or does anyone... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • NSAIDs reduce collagen production? Never heard of that. Do you have any sources for that Jane?

  • This article may be more to the point:

    The title of a 2006 study sums up the finding: “Indomethacin and celecoxib impair rotator cuff tendon-to-bone healing.” The important finding to note in this study is that the problem was not just at the site where the tendon attaches to the bone, but in the overall strength of the tendon, even 8 weeks post-surgery.

    Collagen is the building block material for tendon and muscle regeneration. A 1995 study suggests that NSAIDs interfere with the amount and the quality of collagen produced during the healing (proliferative) phase of a repetitive motion injury. On a positive note, once the healing phase is complete and the tissue is in its maturation and remodeling phase, NSAIDs appear to stimulate protein synthesis, a beneficial effect.

    A 2007 study of the healing response of rat patella tendons in the presence of a variety of pain-relieving medications provided some interesting and cautionary results. Acetaminophen (not an NSAID) and ibuprofen had no detrimental effect on tendon healing. The healing process for the animals fed the other NSAIDs in the study (naproxen, piroxicam, celecoxib, valdecoxib) all showed decreased tensile strength and reduced collagen content. t-science/2011/02/24/nsaids-interfere-with-tissue- healing/

I am pain free now for the 3rd day After 3 years of suffering with OA in both... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • If you over do the workout, you would probably experience the pain returning.

    My opinion only - when trying to bring exercise back into your life, take it slow and gradually increase over the weeks to come to build up your muscle strength. This will allow your muscles to take some of the support of your body. If you do it all at once, start at full steam, your body won't be ready for it.

  • That makes sense. Thank you!

  • I don't think you can go wrong with doing a couple of laps in a swimming pool

Please join me in welcoming our newest members Tasha Catatlina Camarillo... — Sarcoidosis for Beginners

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  • Welcome all to the group.

  • Welcome

  • Welcome to our group. Please feel free to ask questions, make comments, share thoughts and experiences. We are all beginners here and learning from each other is as important as the educational information that is shared.. We are so very glad to have you with us, I was DX in January of 2016. and Welcome !!

Hi I m curious about books that have helped you develop self care strategies... — Stiff Zebras - Ehlers-Danlos Syndrome stiff joints muscles not Hypermobile

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  • This guy is a PT,it helps to have one to guide you through, but I haven't found one in my area that will follow the Muldowney way. I just use it on my own to the best of my ability

  • Thanks. That's in part why I ask. Can you get somewhere when the PT ain't an option?

  • It does seem to be helping a bit. I try very hard to follow his instructions.


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  • Retreat will take place in San Antonio TX; dates are, August Friday CHK IN;19-2016- chk out; Monday morning August 22-2016. Cost is $175 per person. (For all nights) This only pays for hotel fee. You need to pay for your meals.(or anything else you may inquire) Keep in mind Hotel does provide free breakfast. Asking everyone please fly in after 4pm on Friday,(due to chk in time) there's a free shuttle to hotel. The name of hotel I will give everyone later. Administration will pay for Lunch a group lunch. During the Speakers meeting we will provide a lite snack. Oh yes, all members who attend will receive a beautiful thank you Gift for attending and supporting SJOGRENS Green Leaf Foundation Retreat. This is a time for Bonding, relaxing and having fun. Let's do this Ladies

Needing some love yall it s been a bad weekend Friday night started a horrible... — Butterflies - Lupus Survival Forum

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  • I feel you! I was told if you take your finger behind your ear, find the bone and go right under it, that where to apply heated pressure. I finally had to get an antibiotic and taking Zyrtec daily. Doctor said they're so much congestion pressure from my sinuses, my ear drums are bulging, and that's what's causing them to hurt. (This is my second go with it in 30 days).

    I hope you start feeling better soon, this nonsense stinks....if you could smell - lol!

  • You need to go to your nearest Quick Care right now! Bloody mucous and earaches are SERIOUS. You do not want to lose hearing!

  • I get frequent ear infections like a 5 year old. Lol! In all seriousness, and depending on the severity of your issue, I would definitely see a physician. My doctor treats the infection with antibiotic and drops. The drops are called Floxin Otic. I hope you feel better.

I want to scream and cry because of frustration I went to a nero here in... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • If you are going to mail to a NS, I'm sure you will speak with their receptionist first anyway but most require the actual films.

  • Unfortunately LOTS of Drs will say you don't have Chiari if your herniation isn't over 5mm. This is not true. Size doesn't matter in this case. You will also run into neurosurgeons that will tell you there are no Chiari specialists. That is when you thank them for their time and go find someone else. I have been struggling with this for the past 7 years. No one in my home state will touch me and I am perfectly ok with it. I fly to NY for treatment and it has literally saved my life. Not a lot of people understand it, but it's what works and it's who gets me. So to NY I will go!

  • Dr Greenfeild NY Cornel! The best! I agree NY all the way

OH that red lobster was so good yesterday it s a good thing we dont have one... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • It all sounds lovely have a wonderful day my friend

  • it's only 50degrees here so its a cold rain and our red lobster is the same distance for us...

  • Yes love red lobster but it's.30 miles from here..

Is Turmeric powder starchy I bought some organic quality turmeric powder and... — The Low No Starch Diet for Ankylosing Spondylitis

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  • Yep I guess I am giving mine away? Can you not take curcurmin capsules too?? I have some of those too. Maybe I should open one up and test it with iodine.

  • Yup turmeric is starchy.

  • But circumin is quite good. And you can also use a high dose of fish oil if you like instead of turmeric. Will give you more benefits and don't forget vitamin d and other vitamins.

So honest question I was told my life expectancy with lupus likely wouldn t be... — Lupus Loud

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  • No!! Your lupus could be managed and you could live an entire lifespan. If you can keep your heart, lungs and kidneys working well as possible, then as a RN you could see 80!! Sometimes the lifespan of 85 ish is cut down 70 or 80 yrs. I'm 47 yrs old, I've had lupus for 30 years and even though I have pain and other complications I'm not dying. But to be honest, no-one but God knows how and when we will die. Live your life to the fullest!!

  • Amen

  • I was diagnosed at 18. I am 52 now with 3 beautiful children and doing pretty well. Every story is different. You can't live in fear, but you must take care of yourself. There are very scary stories, but positive stories are here as well.

Prednisone in treating severe flares I went to see a new doctor that strongly... — The Low No Starch Diet for Ankylosing Spondylitis

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  • I have developed many food allergies and i have been on prednisone for over three years. My rheumy has been trying to down my dose slowly but with no success every time im on 7mgs something happens that i must go up up up again. So frustrating since. It shouldn't be used for long term because of side effects on my body/bones etc..

  • Fa doctor supporting the diet. Wow great stuff. Hope you keep your pain under control.

  • Yes all good approaches you are working with. I a on prednisone taper right now. Using low carb diet with lots of veggies and good fats and protein. Sugar increase inflammation- good luck hope you you are feeling better soon.

Hi I m thinking about going after compensation for all the medical negligence I... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • My idea was to mail bomb the press, MP's and house of commons. All of us, not just about medical.

    Or all hire a solicitor to help us fight negligence against government, because it isn't really the doctors, it's the pressure they're put under.

  • Yep.

    I've been yelled at by drs for simply asking what they think is causing my symptoms. I have more trauma from trying to get help than my crazy health causes me.

    My gp supports me in that he agrees i need answers and help and can understand why i seek better health but can't help. He's careful now to check out specialists before he sends me but he's run out of ideas.

    Some people must be ok with living with disabling symptoms and accepting diagnoses that don't even make sense.

  • Some people don't want help hon :( sad but true!

Well tomorrow I have an emg scheduled at 7am ew and Thursday I have a lumbar... — Behcet s Disease You Are Not Alone

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  • Angelica Scheidler,happy to hear you are getting short term disability and I hope you will get it permanently! Hugs and hoping all goes well with your lumbar puncture and EMG. Hugs and never alone.

  • What are they doing a lumbar puncture for?

  • I have the papers with the listing of all the tests they are running with the fluid. My neurologist and my rhum are thinking I have MS as well. She's also checking for neuro Behçet's. My MRI and symptoms are mimicking ms, which Behçet's is known to do, but the test will have make a definitive diagnosis for me.

Hola mi hija el año pasado le diagnosticaron Purpura HS. somos de ARGENTINA — Henoch Schonlein Purpura HSP vasculitis

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  • Hello Mabel...don't be scared of the biopsy. It is important you do it for the right diagnosis. It is a very common procedure and it isn't painful.Take care x

  • Gracias. Se q es lo mejor para ella paraq puedan tratarla mejor y preciso. Gracias Stephanie Hibbert. Dios te bendiga

  • All the best x

Hey everyone and having an x ray of my spine tomorrow complete spine I ve... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • I've had a CT scan of my legs and my rheum said it needs to be reviewed and re done to look at my hips and see if they've changed in the last 2 years

  • That's a lot of stuff going on in your life. I would think the xray shouldn't take long.

  • Yeah it shouldn't do my doc said they're doing 3 angles of each section of my spine but my hospital radiology is open 9-12 and 2-4 and you wait up to an hr or so before being seen since it's a walk in centre you just go give in your Drs form and wait until someone's there or the machines free (it's located by the A&E)

Ok everyone this week has been one of my worsts yet I want to literally break... — Costochondritis is a pain in the chest... literally

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  • My grandkids help me forget my pain while I'm busy making memories with them. God bless you I so understand your feelings. It would be so easy to quit but we must press on. Hang in n hang on my friends.

  • Hang in there. I have been where you are(just last week). I just think about my family and what I mean to them--even though I cannot do what I did or even what I want to do. I also cling to my faith. It isn't always easy. May your good moments outnumber the bad.

  • Yes i also have grandchildren,

    It gives me a focus,

    When i have a good day, if no pain, i enjoy the hell out of it,

    Do things you enjoy, on your good days, find a craft, that

    You enjoy, that will give you a positive, focus.

    I like to Journal, each day, as well ,

    I completely understand how you feel, i think we all have those bad days, dont give up.

another ruff night for baby girl with belly pain I ll call Dr office in an hr... — 2 Oregon kids battling lyme disease

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  • I take that AL-BAB tincture drops in am and pm. I only react if I get in too many drops that I'm not ready for. And the reaction is ear fullness, sharp pains in head, head tenderness, tingly scalp, extreme tiredness. not tummy pain like nausea.

  • The mcbfm1 makes me really really ill so......maybe your daughter is the same.

  • 12:12. shees awake were ganna go out back fer a bitt of sun.. she insisted her doll needed a foot rub first

I have been on LDN for about 2 weeks I have struggled with nausea and bouts of... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Hi Kim Dunham :) Sorry to hear you are struggling. Im guessing you are on too high a dose. May I ask what dose you are on? To lessen the side effects some people start at 0.5mg - 1.0mg and it is increased by 0.5mg a week until 3mg s(which is an optimal dose for most people).

  • I'm on 4.5 mg- which seems really high to me.

  • Whoa...I was told that was the very Maximum dose when I started! I started .5 mg & now I am up to 3 mg.

In the past few months my 24 yo daughter has developed severe PMS She cried... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Also, in my teens and 20's I had acute period pains, doubled over bed ridden unreal pains and cried intenslly with periods, finally in my 20s, I changed doctors and went to a specialist, they found a double cyst (a cyst growing within a cyst) the size of an egg growing in my ovaries. I had a laparoscopy surgery ans put on birth control to regulate monthly hormones to reduce the pain.

    Worth seeing another doc asap for mri to inside.

    There is a syndrom called PCOS that you can read about poly cystic ovarian syndrome.

  • I love my antidepressant (cynbalta). I used to cry like 4 times a day and now I feel naturally inclined to think positively

  • Yes Rachael Boles you don't have to necessarily take much either. Cymbalta and Lidocaine patches were the only things that gave me relief from the living hell of seven whole years of CRPS pain, which I suffered along with the severe brain fog (a known neuro symptom). After 10 months of not being able to walk while bone spur developed in the other foot from using crutches, of watching my legs waste away, of most doctors not taking my pain seriously and not listening to me...Well it all finally started getting to me and I couldn't take it any more. I quit P.T. b/c I couldn't take the pain it caused (Later found out they were making a mistake by using ice, which made the CRPS much worse). I also got fed up and crawled around the house one day to get the materials and made my own cardboard and duct-tape foot 'orthotic' (they wouldn't listen to me about that). Then I started joking about shooting my foot off while also reassuring them I wasn't going to do it, but I was willing to get rid of my foot if that's what it took to stop the pain. Eyes got wide then. I had no idea it was a sign of being close to suicide. At the the time, the stats were 30% of CRPS pain disorder kill themselves. So my brain fog was so bad, I didn't even realize my next doctor (whom I was quickly referred to), spoke with me very carefully b/c he was afraid I'd commit suicide next. He ordered the stubborn podiatrists to get me those shoe orthotics. I was right about that all along, and they helped and I could walk for short periods.

    Eventually, we bought a puppy which encouraged me to walk outside and stand on my wasted away legs. I needed something to look forward to each day. I still didn't have Cymbalta at this point. But at least I didn't have to fight for doctors not to treat me with cruelty and indifference. It was another six years of hell before Cymbalta. I was the one who asked for an SRNI, b/c I found a neurologist's website that an SRNI (Serotonin and norepinephrine reuptake inhibitor) might help nerve pain whereas the SSRIs usually didn't help (there's a difference). The doctor said Cymbalta was the best option. So after all that time, it took less than 10 mg of Cymbalta (I experimented with filling gelatin capsules b/c I did not want to hit my brain with too much), to start to be able to think again, to have the pain lessen enough to be bearable. This was about a decade ago. We had no idea we had EDS Hypermobility then.

    Anyhow, ironically, it was b/c of Cymbalta, which allowed me to think and function better, that I eventually started discovering other solutions for both me and my daughters. I could also remember to do what I needed to do for my own self-treatments (Yes, my brain was once that bad).

    My Fibro. daughter would not take meds for several years either. I think in part b/c of my bad experiences with the med Lyrica. She had been through a whole lot including surgeries etc. too, and her brain fog became severe too, along with the Fibro. The L-tryptophan was the key for her. Just like me, the PMS phase of the menstrual cycle caused not just cramps, but more all over pain, from whatever part of your body is in pain. There's one of your clues it could be a dip in serotonin. The depression and anxiety attacks too. L-tryptophan and a little B-6 (as co-factor. Not a lot needed) brought my daughter back from the brink, just like Cymbalta was one of the things that brought me back from the brink.

    p.s. To be fair, after another year of improvement yet still too symptomatic, my severe EDS Fibro. daughter tried 5 mg of Cymbalta daily. This was after she could think well enough on the L-tryptophan, noticed the HUGE difference, and I was able to explain to her some of her pain was neuro pain. A doctor supported that assessment. The anxiety attacks stopped with this very small amt. of Cymbalta, as well as another layer of pain. She shouldn't be doing this well on so little medical intervention. Her geneticist expects complete disability, yet she stopped being near bedridden and continues to do better. It's b/c of the D-Ribose, the Mg, the D3, some zinc, the L-tryptophan, of course the Culterelle and other probiotics--now the George's aloe for the past several months. It takes awhile to get better and figure out what works, and give the body and brain time to heal.

I hope that a few of you will pray for me My son is graduating tonight and I... — Christian Lyme Disease Support

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  • Thank you, Lisa.

  • Praising God with u!:)

  • Sundra Dauzat it relaxes the muscles and detoxes. If you can't do very hot water, just make it the temperature you can handle. It's the epsom salts (magnesium) that does the actual work. The coconut oil further feed the muscles and helps the entire body relax. I often do this right before bed and then sleep like a baby, too, as it's so very calming. Hope that helps.

Hi this is more of a skin cosmetic concern so there s a lot of products and... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Hi Juliana! Sorry for the belated reply. That's great you're an esthetician! :) Do you have any experience or opinons on those micro-current devices that are supposed to help tone up the muscles in the face? I've started to look into that. The reason I went to a surgeon initially was actually for liposuction under my chin/neck area. But he suggested fillers, microneedling, PRP, etc in my face. I know that mostly nurses and estheticians do those generally. However, the filler he was talking about for my face doesn't sound like it would last as long as normal fillers. He said it would last about a month, then my body was produce 'new' collagen to help fill up the area. Sounds a bit strange, considering fillers elsewhere tend to last around 6 months yeah?

  • I hadn't heard of the host hair loss side effect...We were trying to get a script for my teen, but now I'm not sure I want to...she's already depressed and suicidal and I think going bald wouldn't help!

  • Hi Bianca! I would say it really depends on what you're looking to accomplish the most. Ideally when you talk about skin, you pick what's MOST important to you first and then treat that first and other things after that. It sounds like fine lines and wrinkles are your main concern?

    Assuming you have EDS (correct me if I'm wrong), you may have to take a slight different approach. You know your skin better than I do obviously. A lot of it is going to depend on your healing time if you go other routes besides microcurrent. It's a great option, but it's definitely a process and no guarantee that it will help.

    It might be an okay idea to try the filler that only lasts a month in case it goes haywire, then you aren't stuck with something for very long.

    Microneedling can create awesome results IF your skin turns over and heals itself correctly. If you scar easily, I wouldn't recommend it.

Hi sorry if am Being annoying but I got through the aloe today am supposed to... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • So 1/8 of a tsp

  • was hyperactive then burned out very quickly. Reducing the dose then increasing slowly made all the difference

  • Xxxxxxx Yzzzzzz thank you so much I'll start tomorrow I have fibromyalgia pain and chronic fatigue hoping it helps