Home Forums General Discussion Feeling Discouraged

This topic contains 15 replies, has 7 voices, and was last updated by  jasregadoo 1 year, 10 months ago.

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  • #454157
    frhorngal
    Participant

    I’m coming here looking for a little inspiration and maybe even a little hope. I just got back from the orthopedic surgeon who is recommending surgery to fuse my ankle (that has been angry, swollen and in immense pain for about 10 months)- The swelling is causing the arch to collapse and the foot to roll inward- there is also little to no mobility in the joint. Both wrists and my right ankle are all essentially fused/frozen from this same type of swelling/pain cycle. Surgery to preserve and protect the little mobility I have in that joint seems viable…and terrifying.

    I just want something to work for me…I went down the Lyme wormhole for 3 years, Clindy, Zithro, Flagyl, Doxy and I did AP for 9 months prior to the Lyme Dx. I’ve followed the AIP diet for 2 years without reintroducing anything and I’m back on AP (100mg Brand Mino a day) and Plaquenil. When do I give up on something I have believed in for years and just take what they offer me (Mtx and Enbrel)? I have a physically demanding job as a HS Band Director (including marching band) and can’t let this disease take anymore from me than it already has. I was a concert pianist until the RA took both of my wrists. I can’t let it take this…sorry to vent- I just don’t know what to do anymore

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #454161
    MLTelfer
    Participant

    Very sorry to hear this, but it sounds like you need to intervene on this situation in an impactful way. It is a personal and careful consideration, but it sounds to me like you need to go to biologics quickly. You don’t have to give up on AP. I haven’t, but I believe everything in the arsenal needs to be in play and it sounds like you need to do more than switching around conventional drugs and supplements. Just my very strong opinion.

    #454166
    domgro
    Participant

    I’ll try to give you a little bit hope and some useful tips.

    First of all you most likely need to change your diet. Diet is essential for a better outcome for any disease period.
    science shows , that a whole foods plant based diet lowers the risk for almost any disease and improves prevents or sometimes cures many diseases.
    thats especially true for arthritis (and also lyme).
    if you (or anybody else) are not willing to change your diet , you are not desperate enough period.

    I have/had a severe form of arthritis and many joints deformed in the early stages of the disease. meds never really worked and I never felt well.
    unfortunately diet alone wasnt enough in my case.
    luckily minocycline worked fine in my case but I’m 100% certain it wouldnt have worked as quick and as well as it did on a normal/unhealthy diet.
    when I eat some things I’m not supposed to eat I feel it immediately (even things like salt might cause trouble)

    search for people like dr mcdougall,dr colin campbell
    I’m not saying you have to go vegan,but you have to reduce all animal products no matter what and check if and what kind of animal products cause inflammation. its often dairy , pork and eggs.

    regarding your joints: medicine will be able to repair and fix joints in a whole different way than they are doing it now.
    right now its more primitive and has lots of limitations. in maybe 10-15 years the whole medicine will change,especially when it comes to soft and hard tissue.

    the most important thing right now is to get the pain and inflammation to a normal level,let the body regenerate.once that is accomplished,you can worry about your joints.

    maybe I could help a little bit.

    #454168
    lemons
    Participant

    if you (or anybody else) are not willing to change your diet , you are not desperate enough period.

    I think this lady is desperate. Maybe it would be more constructive to give some kind words of encouragement, rather than a lecture on diet.

    I found your reply extremely condescending, when it is obvious from her post she is already fully aware about diet issues, period.

    Ending a sentence with period , implies ones opinion is the only correct answer, ” I am right and you are wrong , end of ! “.

    I believe there are many factors involved in the make up of these diseases and sometimes, diet alone, isn’t one of them.

    #454169
    jasregadoo
    Moderator

    It appears to me that frhorngal has indeed adjusted her diet quite substantially, as she’s been on the AIP diet for 2 years. She’s not on a so-called ‘normal unhealthy diet’. I’ve seen many people on this forum who cut gluten and dairy and eat a paleo or similar diet, and do well on it. I think it’s sweeping to suggest that we all need to be on one diet or another. What works for one person may not work well for another.

    Frthorngal, I do hope someone here has some advice for you. I don’t know the answer to your current problem, but it does sound like you need some serious treatment, whether that is surgery or biologics or something else entirely. I’m sorry that I’m not well enough versed to give you any pointers. Perhaps you might talk to Dr. S in Iowa and see what advice he has?

    #454171
    MLTelfer
    Participant

    If I may circle around here one more time, because when I see somebody use the word “hope” it resounds in me. I have been involved in this board for about three years after my son was diagnosed with psoriatic arthritis (as many of you know). I did AP through Dr. F for a couple years and I did find value. My predicament is my son is depending on me to help him and I live in fear of making a mistake with his treatment. It would be different if it was me!
    He went to biologics on Dec. 31 2014 and responded immediately. After about 5 months it was like the arthritis never happened. He never got close to these results on AP. I moved to biologics because his joints need to be preserved for many decades and MRI was showing precursors to joint damage. I believe there are times when you need to move decisively, and swapping one diet restriction for another, an antibiotic for another and a supplement for another may not suffice. With fear and doubt which has never gone away I moved decisively and his life is normal for now.
    I also have made very clear on this board that I continue to study and will never stop. One of the benefits to this community is that your posts are answered by people who really care and have tremendous knowledge and like me, STUDY!

    This is where I am at with my journey –

    If his results continue with Humira I will do another MRI to see where he stands with his bone marrow edema. If Humira has improved or corrected that I plan to introduce doxycycline in conjunction with Humira. My studies showed me that tetracycline class antibiotics help establish homeostasis between osteoblasts and osteoclasts in the bones. I am considering approaching AP from the standpoint of joint preservation and working from there.

    So if I may – there is certainly hope. Carefully consider all your options. If you go to a surgeon – he operates!!!! Perhaps go to your rheumatologist again and explore more options. Please feel free to message me if you have any questions, and absolute best of luck.

    #454172
    Jeanies Girl
    Participant

    Frthorngal,

    I wish I could give you a big hug and an answer. This “thing” can be so discouraging, sometimes worse than other times. Pull in and give yourself every necessary break you can to psych yourself up for the next big push back against this illness. The only thing I know enough to suggest is go back to basics (the things you do know work well), commonsense stuff (like the eating right, lots of water, rest), study and seek counsel (hopefully amid all of that you will get some clues to help). I realize you are already doing some of this stuff but if you able try to add where you can. One lady told me she has found Alka-Seltzer Gold helps her with the pain/inflammation.

    My prayers are with you.
    Jeanie’s Girl

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #454175
    domgro
    Participant

    if you (or anybody else) are not willing to change your diet , you are not desperate enough period.

    I think this lady is desperate. Maybe it would be more constructive to give some kind words of encouragement, rather than a lecture on diet.

    I found your reply extremely condescending, when it is obvious from her post she is already fully aware about diet issues, period.

    Ending a sentence with period , implies ones opinion is the only correct answer, ” I am right and you are wrong , end of ! “.

    I believe there are many factors involved in the make up of these diseases and sometimes, diet alone, isn’t one of them.

    ah ok,I didnt know AIP meant Auto Immune Protocol.
    english is not my first language.
    It might sound harsh but I didnt mean to attack anybody and when frhorngal already changed her diet and it doesnt work then she might want to change her diet again?
    I just met many people not willing to change their lifestyle or diet at all because they dont believe it makes a difference.

    I have tried all kinds of diets before including something similar to AIP (which is IMO not very healthy ,although it might help people who react to these specific foods)

    again,sorry if I sounded harsh but other than that I think my post was constructive

    #454183
    frhorngal
    Participant

    Thank you all for your responses- it’s wonderful to have a great community to ‘vent’ to when things are tough- I’m at a crossroads and it is incredibly reassuring to hear that some have successfully used biologics or mtx to help manage their disease while still getting the benefits that AP provides. My rheumy is very open minded so hopefully we can find something that will work for both of us.

    Domgro- I appreciate the sentiments as I know diet has a huge impact on my disease- it was the very first thing I tried when I was first diagnosed and something I continue to tweak as I go through this journey. I am keenly attuned to which foods are reactive for me and which ones are healing. I have been through every diet imaginable…part of my issue was I was vegetarian/vegan for 12 years with undiagnosed celiac. Nothing like living on wheat gluten products with celiac to destroy your gut and promote inflammation.

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #454200
    domgro
    Participant

    Nothing like living on wheat gluten products with celiac to destroy your gut and promote inflammation.

    and what has this to do with a vegan/vegetarian diet? I eat a whole foods plant based vegan diet and have to avoid additional foods in order to feel good/better.
    If I would eat dairy,eggs,too many oils,too much salt,nightshades,too much sugar,wheat and some other things I immediately react to these foods and feel worse afterwards.

    and without knowing your exact diet,I would say AIP is not working at all if you have that much pain,swelling and inflammation.

    and again,I’m not trying to attack anybody

    #454233
    PhilC
    Participant

    I’m back on AP (100mg Brand Mino a day) and Plaquenil.

    How long have you been back on 100 mg of mino per day plus Plaquenil? Are you taking any vitamins or other dietary supplements?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #454244
    frhorngal
    Participant

    Hi Phil

    About 4 months for the Plaquenil and 2.5 months for mino- I take Meriva (a highly bioavailable turmeric supplement) 2x a day…slow and standard release forms- also NAC, Vit D, topical magnesium, a B complex, and probiotics. I also follow a very strict autoimmune diet protocol-

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #454255
    PhilC
    Participant

    Hi,

    If Dr. Brown were still alive, and you went to see him, I think he would probably inject your ankle with dexamethasone and clindamycin. So, see if you can get a rheumatologist to give you a “cortisone” injection in your ankle joint. If the doctor is willing to include an antibiotic, like clindamycin, it would be even better.

    This information may also be helpful for you:
    Low-dose cortisol (hydrocortisone)

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #454790
    jasregadoo
    Moderator

    Frhorngal, I am wondering how you are doing. I hope you’re feeling better than you were two months ago.

    #454804
    frhorngal
    Participant

    awww…thank you so much! You’re so kind! I turned the corner a few weeks ago..right around the 4 month mark, the mino finally kicked in- this, plus, my AIP diet and high doses of curcumin are helping immensely- I still have a busted ankle that needs attention but so many of my other joints are showing signs of improvement, I have less inflammation overall and the fatigue is even lifting a bit!

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

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