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  • In two hours we will have the opportunity to ask Thomas question. Set your alarms.

  • How many of us need to learn to relax our mind. I am excited to learn about mindful meditation.

  • 40 minutes to go! Get your Coffee, Tea (or cocktails!) ready and learn all about how you can reduce the stress and anxiety of your diagnosis.

I d like to start the protocol by taking aloe but I can t buy the right brands... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • In the Files section there is a document helpful for the UK - in that you can find Daniel Coltea as a source for George's Aloe -

    £30 a gallon+ shipping

    or 4 gallon case £120 + shipping - so try emailing Daniel Coltea :-)

  • Some of the other brands have a much higher latex content, and even if you aren't allergic, it can cause other issues if taken long term and consistently.

  • I get mine from Amazon uk ( George's) cheaper and far easier to stomach than other aloe

Can anyone please help my daughter has been on prednisone since last December... — Henoch Schonlein Purpura support forum

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  • Whilst it may be related to medication or her illness you have to bear in mind it could be totally unrelated

    To me this sounds like it could be epilepsy and certainly needs investigating further to be on the safe side xx

  • What you describe sounds like a seizure. Please consider taking her to a neurologist. She may need antiseizure medications. If it happens again, take her to the hospital right away. Unmanaged seizures are really dangerous. You must be so worried! :-(

  • I agree with Julia and Candice, do please find a medic who takes it seriously and investigates properly for the reasons they both give. Good Luck.

Hi I have a 1 5 centimeter lesion of the medial talus in my ankle and the doc... — Osteochondritis Dissecans (OCD) Support

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  • Well I just switched surgeons to one who is one of the very best in the world. He's done studies on OCD among other things. I don't know exactly what he plans to do after he cleans it out, but he said he will repair my OCD lesions. I have more than one plus several areas where the cartilage is disappearing. I'll definitely be asking him what exactly he will do to repair it.

  • This will be my 3rd too

  • It is somewhat discomforting to see all the variations amongst the doctors approaches. My doc is disinclined to perform surgery on my lesion as long as it is stable -no fragments and cartilage is intact - and no pain.

Bonus time I have worn a retainer to bed since I was 15 I am 59 If I missed... — Ehlers Danlos Syndrome and Recovery

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  • On a regular basis I read comments like this and it continues to give me hope that one day I also will have this level of improvement with my health.

  • Kenny you definitely have hope

  • Congratulations, I love hearing your successes!!!

Hey everyone I got a message this morning from a friend who had asked me to... — Takayasu s Arteritis

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  • You're an angel

  • Hello I am Gris Ayala and I live in Alabama and 1 hour from tennesse.

  • Xxxxxxx Yzzzzzz me podrías dar información acerca de juice Plus?? Los beneficios y como se toman?? Espero que me puedas ayudar..Saludos!

So as of last week I was informed that Olivia 12 who has been on methotrexate... — Mothering Juvenile Arthritis

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  • My daughter had to be on Humira for a year to prove to insurance that it wasn't working in order for them to give authorization for her to use Enbrel because it wasn't the "preferred drug". It's all politics. Enbrel doesn't hurt like Humira but it's not working for my daughter so we start abatacept infusions soon. Prayers for your daughter to overcome her worries and fears. It's not easy being a parent and watching your child struggle.

  • We actually inject lidocaine first, wait for area to be thoroughly numb. Then inject humira. It worked better than drawing it up... Humira hurts less if it's room temp. And you should notice a difference with energy:). And always have bevel up for the needle!!! people feel less pain then...

  • The med is painful, but it helps to warm it up to room temp. We haven't seen any side effects

Good Morning to you all — Giant Cell Arteritis Temporal Arteritis GCA

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  • Xxxxxxx Yzzzzzz I forgot corn, and they put most of these in prepared foods. Good luck.

  • Xxxxxxx Yzzzzzz and Laura Patt, I looked at the Paleo Guide last night and it is a lot stricter than what I am doing "régime hypotoxique". I eat many grains and their flour : quinoa, teff, millet, amaranthe, rice, etc. All without gluten. I will have to fin in Dr Seignalet's book directly what he says. But the reciepy books I have are not so strict.

  • I think by slowing down a bit, you will be kind to your muscles and even avoid a flare.....don't forget you still have muscles that are in need of a lot of rest and you don't want to push them to the max. I will look for the belt next time I'm in town, thank you.

So ive found out today that the referrals that the gp should have done on... — parents of children with hypermobility syndrome

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  • I'm used to it with orthotics, gp used to be great but since they told my mum she had a stomach bug and she had a major stroke they've kinda gone downhill! Am just glad Georges consultant is a bloody star or I'd go mad! X

  • Oh no!

    Hope she's ok!

    I'm still trying to find a good one lol x

  • She's doing well thanks considering she shouldn't be here! X

Is there anyone in the UK who has managed to get an adult diagnosis of PANS — Adult PANDAS PANS Lyme Tick-Borne Diseases

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  • Could you send it to me too? Michelle L. Malmberg Thanks!!

  • Happily so, Mina. I have to put together my medical history, so please be patient with me. The PANDAS compilation has to be second to that right now.

  • I understand Michelle L. Malmberg

I have Churg Strauss EGPA And wondering if any of you have had ear... — Vasculitis Wellness Forum

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  • Not yet... The on call care dr told me to take Dramamine for the dizziness and pain. Sort of worked. Still the hearing loss. I'm concerned because if it is sensorineural, which can be the case with Vasculitis, then there can be permanent hearing loss if not treated.

  • I have Wegener's and have/had all of those, ask your ENT if they know or have experience with Vasculitis otherwise they may not be much help. I have permanent hear loss and damage and wear hearing aids.

  • I have wegeners and at the initial onset of wegeners (prior to being diagnosed) I started to become hard of hearing...turns out I lost 50% of my temporary hearing and 30% of my permanent hearing. Then after getting the hearing test I was left with tinnitus (ringing in the ear). I am convinced I did not have that before the hearing test and that the test triggered it. Therefore I do not get a regular hearing test in case it flares up the ringing. I have learned to live with the ringing which is less than after the first 6 months after taking the hearing test. I will not repeat that test unless I notice I am getting even more hard of hearing in the future.

Ellie Lobel my LLMD fully supports BVT but admittedly hasn t learned much about... — Bee Venom Therapy for Lyme Disease

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  • There is not a lot of research on Lyme and Bvt other than the clinical study in the Files. But there is a lot of research on Bvt in general used to battle HIV, Cancer, etc.

  • We have a doc in the files wirh many links. also at the very bottom is a doc called S48 full

  • Nice, thanks! I'll print the information out for my doctor.

I m sorry to be a downer today cuz it s irritating when someone posts personal... — RSD Reflex Sympathetic Dystrophy-A place for Support -Stop the Burn

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  • I had a horribly abusive ex- physically, mentally and emotionally- and I don't think I will ever be the same.

    I didn't know what to do when I went on a date after the divorce and the guy called me by my name a few times in a short period. I asked about that, and he said "I like your name, and I like the way it sounds when I say it!" I wasn't used to being called by anything nice; definitely not my name. I read in a book on abuse that abusive men rarely call their partners by their names. It distances them from the one they abuse.

    I hate to read this. It breaks my heart to hear someone else go through it.

  • I understand your frustration.

  • I can't find this on our group site

My high viral load is dragging down my immune system helping keep me sick — Bee Venom Therapy for Lyme Disease

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  • Lol no problem! You probably don't have to pick. Dr.K himself treats w/BVT. I'll post the article written by him on the subject. My Dr. K practitioners had me on on around 50 supplements. I didn't improve, I grew more ill, not a herx either. Being on so many supplements I couldn't figure out which were making me ill. When I told him my issue all he said was "up your binders."

    Got a ways to go but Only a month in I see significant improvements, faster than on the almost 3 years of aggressive antibiotics. Still getting to the bottom of what's tanking my immune system, probably need other treatments to clean up the mess but BVT is the best Lyme choice I've made.

    Lots of Dr.K's treatment is great but BVT eliminates the need for many of the products. If you see doctor K and he doesn't force products on you that you don't need keep him. If he does you'll know he's not the Dr for you. I know he's an excellent, cutting edge LLMD but not sure if he's a greedy salesmen like mine was

  • Maryann Pomponi yeah.. i'm not sure if he is a greedy salesmen either. He is a good doctor for sure.. but I also wonder if all of his treatments are really necessary and how may of them are worth the price..

    So happy to read that only one month into BVT you are seeing improvements! That is sooooo great! Hope you continue to improve! :)

    Thanks again for your answers ;)

  • Less is more with bvt. There are videos in the files of the supps that work best with bvt.

We are most likely approaching a move and these cities are our options — SJIA Systemic Juvenile Idiopathic Arthritis

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  • Iowa . . . . Univ of Children's Hosp in Iowa City is supposed to be one of the top ones for this disease. Dr. Hong is our specialist. She is great!

  • Interesting, my husband cancelled his interview in Iowa. But good to know!

  • Xxxxxxx Yzzzzzz maybe rethink it. They are building new clinics to the unit/hospital now and it is a monster. Research!

As many of you have experienced I struggled terribly with my GI symptoms and... — Amyloidosis Support Forums Inc

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  • I have GI issues too. When you went into remission, they went away? What, if anything, did you do to ease them before you went into remission? I have bloating, a full feeling as though I've just eaten, and sometimes nausea.

  • They started improving about 4 months into remission and I was totally normal one year later. I had all the same symptoms as you and I was miserable. I drank a lot of high protein, high calories smoothies with avocado, peanut butter, coconut oil and other high calorie, healthy foods. I also took digestive enzymes and probiotics. But time after remission made the difference. pes

  • Thanks for the info. I appreciate it. I'm glad to know that eventually things will improve. :)

Talked to my dermatoligist now and she is suspecting that imurel could be the... — Behcet s Disease You Are Not Alone

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  • It would be worth another try with the Rheumy. I hope you get relief

  • I notice increase of pain with Imuran but the Imuran needs to kick in still, my dermatologist gave me Minocycline for skin issues like the dermatitis and follucilitis etc. Maybe an idea to ask the dermatologist. I don't think a dermatologist can give anything for joint pain. Hope you will get relief.

  • I have both rheumatoid arthritis and Behcets. It's definitely worth looking at with your rheumatologist.

I have a homozygous MTHFR gene mutation making it more difficult for my body to... — Bee Venom Therapy for Lyme Disease

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  • Milk thistle is good, but not dandelion root, per previous conversations on this group.

  • My herxes haven't been bad. My main concern is the MTHFR mutations and my immune system. My body can't get rid of toxins well on its own. If I don't get rid of them myself they'll harm my already weakened immune system. I am also on Zithromax & Rifampin for Bartonella so I must get rid of the extra dead Bart on top of what the BVT is killing. On antibiotics you should detox somehow every, single day. I assume lemon water and raw apple cider vinegar don't wash out bee venom.

  • I have not only MTHFR but other detox related mutations. I herxed so much that I couldn't tell lyme from herxing and when i stopped abx, i felt better than i had in months before (this was awhile back, no longer on abx since can't detox fast enough). I use infrared sauna, epsom salt baths, liposomal gluthatione and many others. there are a list of options to try here: Personally what's helped me most if finally finding someone familiar with these genetic mutations and how to supplement around them. I'm only up to 3 stings but have not herxed which is a small miracle. Today is 4 stings, let's see.... I'm in Boston area and can recommend someone here but don't know others. Try looking up practitioners perhaps via Dr. Amy Yasko or Dr. Ben Lynch. I tried navigating the protocol on my own but found it challenging though I'm guessing possible. Dr. Yasko has a shortened directions in her online, free book. Best wishes. I know this is a huge piece for those of us with this. It's hard for body to tolerate treatment without addressing it.

Hi All. My Aunty added me to your group a couple of hours ago — Idiopathic Thrombocytopenic Purpura ( ITP)

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  • Had an appointment today. Platelets are now 214. 6 days out from a transfusion. They did confirm I can have transfusions regularly as needed. There is the chance that your body can react or become immune to the stuff.

    At least I have the info for future treatments if this fails or does not help.

    Unfortunately had a cold last week. So it just regular visits to the vampires. They will fall in a few weeks just how much we don't know.

    But feeling a little more positive. The bone marrow early results say my bones are producing alot of platelets. The final results come next week. They only checked as in some rare cases it can mask other issues but looks less likely.

  • That's a good count. Good luck!!

  • Thanks chick :)

Looking for advice regarding the flu jab or nasal spray Just back from a check... — Henoch Schonlein Purpura support forum

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  • We have been advised no live vaccines, which the most is. The shot is not a live vaccine.

  • My daughter has been getting the nasal mist without a reaction. Best to get vaccinated as actually getting the flu could be bad!

  • I would opt for the injection. I'd avoid the live vaccine to be on the safe side, but I would get vaccinated, especially if he has any risk factors eg asthma

    I have the vaccine each year and have never had a relapse.

    I have to say the research that's looked at this has been quite poor and there's no proven link that the live vaccine causes HSP or relapses in healthy children / adults.

    Studies carried out have looked at very small groups or single case studies and many of the subjects had underlying health issues already or allergies making the findings qurstionsble.

    If worried I'd get advise from his doctor

Looking for advice regarding the flu jab or nasal spray Just back from a check... — Henoch Schonlein Purpura HSP vasculitis

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  • The injection is NOT a live vaccine and therefore should be ok. The nasal spray IS live and its best to avoid live vaccines whilst having (or recently having) HSP.

  • My daughter has hsp we were told under no circumstances was she to have the vaccine. She was however in the state of stomach issues and the start of her kidneys failing. I think they just wanted to make sure the drugs she was given were to help her at its present stage and not worry about what could be.

  • Hi, we were advised to have the injection for my son last year rather than the nasal spray. We then ended up with a recurrence which lasted a couple of months. We won't be doing the vaccine again this year.

My 22 year old daughter had a subarachnoid hemorragic stroke yesterday for no... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Prayers are with you.

  • exactly. i have said a few times, that if a healthy person were to suddenly feel as i do, they'd seek the ER immediately. and I just go about as "normal".

  • Xxxxxxx Yzzzzzz :-(

Is anyone on amitriptyline and have had iv sedation at the dentist I take 30mg... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • I take them and recently had surgery under general anaesthetic. Asked at present op if I needed to stop them and they said not to as would be OK

  • Thanks everyone I spoke to my dentist today snf he said it's fine thanks for all your advice xxx

  • Definitely check with your dentist!

I really need some help my lg is 2 5 and just suddenly started getting the... — parents of children with hypermobility syndrome

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  • Sounds like she has one already cystitas go to dr

  • No infection just the sensation she hates. Think we will just have to persevere

  • In her words "it's too scary" so definately the sensation.