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  • #461063
    Red Lizzy
    Participant

    Hi,

    First have to say we are all different and dosage can change things, but from what I recall, definitely noticed changes in the first 2 weeks. I think there are a few others who were supposed to start it, so maybe they will chime in with their results to give you a better idea. Liz

    #461039
    Red Lizzy
    Participant

    Liz,

    I have a question on taking the PEA supplement. Do you take it on an empty stomach or with meals.

    Also, I am curious. What brought you to the Roadback? In my case I have RA and the discussion have helped me tremendously over the years. I was even bit by a tick after being on the Roadback and it educated me on exactly the best way to treat it.

    Thanks!
    Patty

    Personally I take it as per the directions they stated. AT least one hours before or after meals, with at least 10 hours between doses. Normal starting dose is 2 in morning, 1 at night.

    I am here since I am treating Sclero and Sjogrens with AP and it has made a huge difference for me. If you read some of my back posts you will find info on this. Liz

    #461025
    Red Lizzy
    Participant

    Hi All
    I have scleroderma and have severe lung fibrosis. I am currently on 2000 mg of cellecpt and 100 mg of Minocyn 5 x per week. I also take Nexium and many many supplements. I am wondering if anybody taking similar meds can help me map out a timetable to maximize the full potency of my meds and supplements!! I would appreciate any advice ! Thank you Marla

    Technically, no antibiotics should be taken while on Cellcept according to the drug manufacturer. Cellcept depends on the gut biome to work properly and any antibiotics will interfere with it by varying the dosages area under the curve (AUC). That is not to mean it is not done, just should not be done. I did mix the two initially since I had lung issues, but dropped the Cellcept once things normalized. Is that what you are trying to work around, or something else? One suggestion is to concentrate on lowering levels of TgF-B1, this will help prevent further lung fibrosis and in conjunction with Minocycline can even heal the existing fibrosis better than using the new anti-fibrotic medications.

    #461001
    Red Lizzy
    Participant

    Linda,

    I use the 400mg caps.

    Liz

    #461000
    Red Lizzy
    Participant

    Patty,

    Seems they run out of this stuff pretty frequent, last time was about 2 weeks ago, maybe they cannot send too much through Customs at one time. A note in the listing states they will have more stock on Nov 11 and says you can place your order now and will be shipped when it arrives. Seems they raised the price too, from $34.95 to $36.95. So far they are the only company carrying that brand name, though there are 3 other companies that claim they use the same raw material, OptiPea. They are PeaCure, Mirica and Vitalitus, haven’t tried either of these, plus the dose of active ingredients varies between them.

    #460974
    Red Lizzy
    Participant

    Does anyone know if the PEA supplement is still made from egg yolks? 1 am considering this supplement but allergic to eggs.

    First only consider the products made in the Netherlands, that are pure PEA only, Opti-Pea. Next email them and ask the source. I have found them very good at responding all my emails within 24 hours. Never consider any bulk powder that lists China, guaranteed contaminated and worthless. All the top brands use the product Opti-Pea made in the Netherlands, not sure if egg based or not (I hope not for your sake, so you can use it)

    https://www.optipea.com/

    #460969
    Red Lizzy
    Participant

    Vinny,

    I think you will be very happy with the results you and your wife obtain from PEA. I brought a bottle to my Pain Management doctor when I first started using it so he would know what I was doing. He remarked that I looked better than he has seen me in a while, probably due to the decrease in inflammation or something. He took down the name so he could look into it and after researching it he purchased some for himself!. I just saw him yesterday and he was raving about how he felt, so that says a lot! I hope to hear your updates, I am sure they will be good also. Getting off the hardcore drugs has really been a relief for my body. Good Luck!

    Liz

    #460944
    Red Lizzy
    Participant

    Back in April, I tripped over my dog’s bed and fell pretty hard. I had x-rays that showed a tiny crack in my shoulder. I went to physical therapy for several months, and eventually had an MRI that showed bone-marrow edema, which is inflammation in the bone. The doctor said that there is not much to be done for that, other than continuing the exercises given to me by my physical therapist, and time. No need for surgery (thank goodness) and a cortisone shot would not help. He said that it would take about 6 months to heal, but thought that it might take me longer, given my inflammatory arthritis, because my body might not be as willing to let the inflammation subside.

    He is an orthopedist, though, not a rheumatologist. I’m wondering if anyone here has had a similar issue, where you had inflammation caused by injury, and whether it took longer to heal than it would for an average person. It’s been a bit longer than 6 months, and while the pain is nowhere near where it was at the beginning, it really hasn’t improved in the last 2 months or so.

    Back in April, I tripped over my dog’s bed and fell pretty hard. I had x-rays that showed a tiny crack in my shoulder. I went to physical therapy for several months, and eventually had an MRI that showed bone-marrow edema, which is inflammation in the bone. The doctor said that there is not much to be done for that, other than continuing the exercises given to me by my physical therapist, and time. No need for surgery (thank goodness) and a cortisone shot would not help. He said that it would take about 6 months to heal, but thought that it might take me longer, given my inflammatory arthritis, because my body might not be as willing to let the inflammation subside.

    He is an orthopedist, though, not a rheumatologist. I’m wondering if anyone here has had a similar issue, where you had inflammation caused by injury, and whether it took longer to heal than it would for an average person. It’s been a bit longer than 6 months, and while the pain is nowhere near where it was at the beginning, it really hasn’t improved in the last 2 months or so.

    If you are looking for something to speed up the progress of your injury look into this product, has been working wonders for myself and 2 of my relative that have tried it, really is good …

    http://www.roadback.org/forums/topic/cutting-edge-supplement-for-pain-inflammation/

    #460880
    Red Lizzy
    Participant

    RedLizzy, I PM’d you regarding this – let me know if you do not receive my message.

    Dawn

    RedLizzy, I PM’d you regarding this – let me know if you do not receive my message.

    Dawn

    Sorry, not always logged in so am not aware of the message. JUst checked and replied to your PM, if you need more info just PM again, I will check from now on, just in case. Liz

    #460863
    Red Lizzy
    Participant

    Liz, it is interesting. How long have you been taking it and how much?

    Hi Linda,

    Happy to answer any questions you have. First I have to say I was an extreme case, I had been on the heavy meds since 2011, each year came an increase in dosage due to more tolerance for opiods and also opiods create a condition called hyperanalgesia, which means then basically lower your pain theshold so things that normally would not cause you pain end up doing so, they basically make it almost impossible for you to make a clean break!

    I started using PEA in April of this year, initially at the recommends 3 caps daily, in a week I noticed a slight benefit but not enough for my needs,so I began to increase, one cap at a time until I was taking 3 in the morning and 3 at night, that made a big difference. This dose is well within the guidelines the manufacturer recommends. After being on it for about a month I began to lower the dose, currently my maintenance is 3 caps, 2+1, which allows me to maintain the benefits. I occassionaly use a tramadol,maybe twice a week, which is significantly less potent than what I was on, and pretty easy to get a script for. I highly doubt you are in my situation.

    The recommended dosing to start off is 2+1 for 50 days, then lower to your maintenance, usually 1+1 daily, which seems to work for most people. This is the best thing I have ever done for myself and feel so much better because of it. In a way I believe it may have been one of the reasons I ended up getting sick due to immune supression caused by opiods.

    The brand I use is Ergomax Opti-Pea, made in the Netherlands, which is the highest purity brand out there, over 99%. If you decide to try it stay away from other brands, they most likely are Chinese products packaged here and next to worthless and are not much cheaper. If you need more info just let me know. Thank you. Liz

    #460831
    Red Lizzy
    Participant

    I ran into some information on the Mercola site talking about this kind of probiotic so I am wondering if any of you know more about it.It does sound logical as I know animals have their favourite “licks” for just such gut problems.Mountain goats in the Rockies have been followed for a few years.Every spring they make their way down to certain spots in the valleys to drink at murky white pools and lick certain rock to tank up on probiotics in the water and minerals in the rocks.A long winter eating nothing nutritiuos sends them all down as soon as the snow clears.I have half a mind to try this.
    https://rebelhealthtribe.com/probiotic/

    Hi Lynne!

    Haven’t seen you around lately, glad you found the time to get online considering all the flower and animal work you do. When it comes to probiotics I have tried them all, including this one. I have a collection from round the world, Japan, Germany, Italy and and natually quite a few from the good old USA. Very few actually do much of anything, so I have wasted a lot of money, but I have learned a lot in return, so I can give you an honest appraisal if a product is good for your purpose. Most people shy away from spores, but as long as you are not immune comprimised and have a good balance of friendly probiotics in you already, not much chance of the spores turning pathogenic on you. In fact one the best available is right in your neck of the woods, Canada, it is called Mutaflor, an E coli product that the US FDA blocked because it was too good, but still plenty ways to get it into the USA if you need it.
    Now back to Mega Spore Biotic, nothing really special about it except for Bacillus Indicus, which produces carotenoids, which you can just pick up as a supplement, no real advantage to your body by having it produced in your gut. The rest of the strains are found in many other formulas and are nothing special either. It is really overpriced IMO, so I really do not recommend it, you can do much better. From what you stated I know of a product, not a probiotic, but a totally natural substance that would definitely do the job, I use it myself, so if that probiotic does not work out for you let me know and I will send you info on this alternative that will surely do the job for both animals and humans.

    #460814
    Red Lizzy
    Participant

    Hi all. I just wanted to share a bit of good news. I am not saying I’m cured lol. I started antibiotics June of last year. I tried taking them daily and it was to much for me. The doctor kept saying to try and slow down some people don’t need that much. I was very persistent thinking he was wrong lol. I could never tolerate doxy/mino. I had to switch to biaxian. I switched to taking 1 pill every other day. My ANA is now negative and my SCL went from 3 to 2. I know the antibiotics are helping. I did test positive for Lyme as well. I also have SIBO but all my GI tests are normal. They think the SIBO triggered mast cell issues but hopes it resolves after the SIBO is treated. I bought a sauna i use daily and am going to travel to Bahamas for a stool transplant and pray it fixes my gut. My diet is strict and WBC is low but I am not giving up and will fight to the end!!!💕

    Hi all. I just wanted to share a bit of good news. I am not saying I’m cured lol. I started antibiotics June of last year. I tried taking them daily and it was to much for me. The doctor kept saying to try and slow down some people don’t need that much. I was very persistent thinking he was wrong lol. I could never tolerate doxy/mino. I had to switch to biaxian. I switched to taking 1 pill every other day. My ANA is now negative and my SCL went from 3 to 2. I know the antibiotics are helping. I did test positive for Lyme as well. I also have SIBO but all my GI tests are normal. They think the SIBO triggered mast cell issues but hopes it resolves after the SIBO is treated. I bought a sauna i use daily and am going to travel to Bahamas for a stool transplant and pray it fixes my gut. My diet is strict and WBC is low but I am not giving up and will fight to the end!!!💕

    I hope you do not mind if I give you some good advice concerning Fecal Transplants. First, the most successful are those in which the donor is a blood relative, this is due to DNA compatibility. As a rule, most non relation FT last only about 6 months, then your old pathogenic bacteria overcomes the transplanted bacteria and you are right back where you started. I assume you will be using Taymount’s new location in the Bahamas? The most likely solution to this is to totally eradicate your biome before transplant, and that includes your oral biome also! Similar to Bone Marrow Transplants in which your marrow and stem cells are totally destroyed by chemo/radiation before transplanting the new material, your biome must be totally destroyed by use of very potent antibiotics so that there is nothing left to reject the new biome. Easier said than done, due to the vast array of strains, many requiring special antibiotics since they are anaerobic and will not respond to most. This is not something that is accomplished in a few days, so be prepared for numerous infusions and side effects. I do not believe Taymount really pursues this practice, it seems they rather feel that multiple infusions (10) overcome this issue. When I asked for statistics on successful FT over 6 months, they said these were not available as this time, so I think they prefer to keep this information private since it may not be too good. Despite doing this, it still does not work every time, but it is more successful than if it is not done. I have looked into this myself and keeping it as Plan B should my current treatments fail at some point. It is a lot of money to spend and you want the odds in you favor as much as possible. Good Luck! Liz

    #460762
    Red Lizzy
    Participant

    Hi Liz
    How is your shortness of breath ? Can you climb stairs ? Do you know your FVC or Dlco. Are you on a specific diet ?
    TIA
    We’re on the same page it seems

    #460690
    Red Lizzy
    Participant

    Since you need lots of Probiotics due to AP, I would suggest trying VSL#3. It is a multi strain product with 112 billion CFU per capsule, I usually wait 3 hours after taking AP just to make sure the gut is free and clear of any antibiotic. Also one word of advice on using Cellcept and any antibiotic. Cellcept is a unique immune suppressant, it depends on gut bacteria to work properly, so according to the drug company that makes it, antibiotics should not be used when using Cellcept since it will not work as well. How much the difference will be is not stated, perhaps your doctor might know or the drug company can give you an idea. Something to check on if you will use both. Good luck!

    Liz

    #460689
    Red Lizzy
    Participant

    Hi All,

    Just bringing forth my experience with CellCept for Lung Involvement. I began having shortness of breath about a year or so ago, CT scans showed progression of ground glass opacities in both lungs. My Rheumy put me on Cellcept, 1000mg, which is really not much at all, but obviously it was enough to do the job. My followup test showed a nice improvement, including DLCO, so I was taken off Cellcept. So far so good, maintaining improvement so far. Cellcept does not work for everyone, nothing does, but it is a very good drug and contrary to all the side effects listed as possible, not many people get much, worst for me was some hair shedding,but it all came back after quiting. Btw, I am now on AP also and that has worked out well too. Good luck!

    Liz

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