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  • #374059
    tbird2340
    Participant

    @Suzanne wrote:

    @NotfondofRA wrote:

    I am still on AP, 100mg 2x MWF and I am weaning off of the Embrel. To me it came down to quality of life- sure I didn’t want to start Embrel but it helped and I think it helped with the AP also.

    I’m never sure what to make of posts about Embrel. I’m glad it works so well for you.

    What do you mean by this?

    Thanks

    Also, thanks for the replies guys.

    #374054
    tbird2340
    Participant

    So I didn’t take any Doxy (or the other one) this past Saturday and Sunday (per usual).. My pain seemed to subside and go back to “normal”..

    I proceeded with the normal dosage this week, so far (2) on Monday and (2) on Wednesday.. Well I’m guessing that is bringing the herx back because my one shoulder is the most pain I’ve ever felt in it (usually doesn’t give me problems)..

    You know that bone that short sticks out up on your shoulder? Well on my left side that bone is a little bigger than on the right and it is oh SOOO tender.. Possible herx symptom?? (I hope)..

    #374049
    tbird2340
    Participant

    Thanks for the reply Phil.. Makes me feel better..

    AF, does Dr S just treat with AP or?? I think my doc went to a Lyme conference recently and that’s why he’s giving me what i’m on now (at least that’s what my wife said.. :)).. So is Dr S for lyme as well?

    We called him (our doc) yesterday.. He said that it sounded like I am having a herx which is a good thing, but he said if I am miserable he doesn’t want it to be too much too fast, so he said to not take the azithromycin and to wait to take doxy until I feel better then start back slowly..

    He also said to take hydrocortisone to help support my adrenals..

    #373663
    tbird2340
    Participant

    So for those that have gone to him for their RA.. Does he basically do the same for each patient? A week of IV’s?

    If someone could elaborate I’d be grateful.. I go to a DR who is willing to do things and if it’s IV’s and that’s it I may ask him to do so.

    Thanks much!

    -Tom

    #374045
    tbird2340
    Participant

    So how does everyone “track” if they are getting better? I mean, say I am “herxing”.. Are their certain blood levels that are supposed to go up / down with herxing? With things working? Etc?

    I have my numbers posted from April of this year and I haven’t done anything RX wise from then until now so I would *think* they would still be relatively the same?

    Thanks again.

    #374044
    tbird2340
    Participant

    @m. wrote:

    Hi tbird,

    I’m sorry about your pain! It is very hard to know what to do in a sea of differing opinions! We just want to feel better!

    To me, your story illustrates one of the big forks in the protocol road. Does one need LESS (anti-microbials)? Or MORE? Protocols vary. It’s hard to say who is “right”.

    No matter what type of practitioner you go to, you have to protect yourself from harm, and hold them accountable for their treatment plan. How does the MD know x is your problem? What tests or clinical signs will we be looking for to see I’ve improved? How will I be assured that I’m getting better (herx) and not worse?

    If you cannot manage this yourself, look around your circle of friends and family for someone who will help be your advocate, to ask hard questions, and keep you organized.

    It’s good to always ask for copies of your test results and geek that I am, I put them into a spreadsheet, making notes about my protocol at the time.

    This is a very tough disease, and hang around the forum a bit and one quickly realizes people are actively working on diet, gut health, hormones, stress reduction, in addition to an anti-microbial protocol.

    What AP physicians are getting results?

    Thanks very much for the reply.. This sentence is very important.. “If you cannot manage this yourself, look around your circle of friends and family for someone who will help be your advocate, to ask hard questions, and keep you organized.”

    My mind just does not gravitate, understand, comprehend, etc anything health related.. I can’t read anything health related and have it mean anything to me.. Computers and technology? That stuff sticks with me all day.. My wife is good at it.. I just need to get her up to speed with where I’m at physically. She asks the questions that need asked.

    Thanks again.

    #374041
    tbird2340
    Participant

    @A Friend wrote:

    Hello Tom,

    So glad you are here.

    Just want to clarify which protocol you are referring to that you have used and/or are currently using. There is a very excellent web site known as “Arthritis Trust” (http://www.arthritistrust.org) that does have papers by doctors about various treatments. So, being aware and somewhat familiar with this site, I’m not sure if you are referring to Dr. Brown’s protocols here on Roadback.org or Arthritis Trust. Will you clarify this for me/us (for comparison purposes)?

    So glad you are here. I feel sure you can get much help/input from those who have diagnoses similar to yours.

    Good luck to you,
    AF

    Thanks AF.. Yes, that’s the website I was referring to.. The doctor I found on Facebook was very involved with the arthritis trust.. I was going to do it through him but wasn’t comfortable with the distance.. So I go to a guy around an hour from here but he may have tweaked it (have to ask my wife)..

    #374040
    tbird2340
    Participant

    @Linda L wrote:

    Tom,
    Do you do any detox? Have you tried it in the past?
    Linda L.

    Thanks for the reply Linda! πŸ™‚

    I have a FIR Sauna that I just started back up using this week (used it the past 4 days).. But other than that, nothing..

    #374039
    tbird2340
    Participant

    @Maz wrote:

    Tom, did you mean you started the CAP protocol on the CPn help website? Just wondering, as the Arthritis Trust prefers the use of nitoimidazoles (like Tinidazole or Flagyl). The CAP protocols tend to use tetas, macrolides and nitroimadazoles, but in a stepped fashion, starting with a tetra until tolerated and then adding the others in slowly in the same way. CAP also has protocols for dealing with secondary porphyria that they say can occur.

    http://www.cpnhelp.org/treatment_protocols

    Thanks for the reply Maz.. Now I’m all confused.. I know initially we (my wife and I) spoke to the Mexico doctor about doing the Arthritis Trust protocol.. He was willing but it was kind of odd receiving drugs from a stranger and then not having him close in case something happened..

    That’s when I decided to go to this new guy I’m going to now.. He is open to everything.. My wife brought this protocol up to him and I thought that’s what we were doing but maybe he had a variation to it or something? I’m going to have to follow up with her..

    @Maz wrote:

    As you just started the two antibiotics (at once) 2-3 weeks ago, you’re in the classic timeframe for herxing. Did you run labs prior to starting? Would be helpful if you had a baseline and/or more recent labs to share here (ANA, RF, anti-CCP, SED, CRP, CBC, metabolic panel). If you’ve been monitored while off abx, would also be helpful to note what worsening occurred since being off the Lyme abx. Btw, always thought the mino dose your LLMD had you on was way too high…they usually use doxy or tetra as it’s better tolerated in higher doses (no vertigo or blue-gray hyperpigmentation). It could be you were just suffering from hypersensitivity during that time, due to the high dosing of the mino/biaxin combo.

    On 4/11/14 my labs:

    Sed Rate was 9 (Range 0-15)
    CCP was >250 (Range is 0-19)
    RF was 31.8 (Range 0-14)
    CRP, Cardiac was 35.03 (Range 0-3)

    @Maz wrote:

    If you’re really suffering, Tom, you might find you need to see a rheumy to have help with the pain. As the main breadwinner and a young Dad, it might be necessary to keep functioning until you can get to a place where you can wean off the other drugs. It’s not a failing if you need to do this and you’ve had a rough road, thus far. Who cares what a doc thinks of your past treatment choices? You are paying them and are asking for their opinion and help in the present. πŸ˜‰ A pain management specialist might also be a good idea right now, as I second Suzanne that the doses you’re taking of ibuprophen are very high and, apart from creating gut issues you’ll have to repair, the systemic effects won’t do you any good in the longer term. Something like Celebrex would be preferable to mega-ibuprophen dosing.

    Thanks for the recommendations.. Wish it was easy to call a doc and be like “So.. Will you work with my MD as I try to treat this in alternative ways?”

    #374038
    tbird2340
    Participant

    @Suzanne wrote:

    Do you believe that you have Lyme? Did the LLMD have any labs to show that his treatment was working? What did he say when you reported no improvement? If you think you have Lyme, I think it would be good if you are herxing.

    Thanks for the reply Suzanne! πŸ™‚

    I honestly have no idea if I have lyme or not.. When I got my Igenix test done the guy there said it was negative, however, others here on the board felt my symptoms pointed to positive.. So when I went to the LLMD he felt I had it as well.. He never really said much about me continuing to get worse.. I always asked if it was RA? Lyme? I’m not sure if it was a question he could even answer..

    He was good and nice and always ran a slew of labs but I never saw any improvement..

    @Suzanne wrote:

    That sounds like way too much ibuprofen, especially if it isn’t helping! I think that could harm your liver and kidneys, I know it will hurt your stomach. I think you need to tell the doctor rxing the abx what is happening.

    So I didn’t take the ibuprofen last night for the first time in at least a year.. So yea.. I think it helps a little because last night was HORRIBLE.. Maybe it is I’m just herxing bad and nothing to do with not taking it but I just know last night sucked..

    #374033
    tbird2340
    Participant

    And in regards to if this is a herx / not a herx.. Like I said.. I’ve never really herxed when on any meds.. I’ve pretty much been on a slow and steady decline.. But these past few weeks I can say this is pain like I’ve not really expierenced.. I’ve had my knees hurt every once and a while but as of right now it hurts to put pressure on (like to get up and walk etc)..

    And it’s not all day.. And now my shoulders, which haven’t ever really bothered me much, are bothering me off and on.. Same with my hands.. They’ve never really been an area of concern (some minor pain).. But now I’m having new and pretty good pain in both my hands..

    So is this what is most likely a herx? If so, is that good?

    #365282
    tbird2340
    Participant

    So LDN is definitely making a difference for me so far. I’ve been on it around 2 or so weeks at 3mg.. I’m taking less Ibuprofen and things that were KILLING me I notice aren’t..

    It’s funny you get so used to the pain that you really don’t realize it’s missing when it is.. My right knee would get so stiff after sitting for an hour or so at work and I would have to limp when I got up.. It doesn’t get tight at all now..

    My feet barely hurt at all in the morning now too. πŸ™‚ My wrists are still bothering me but baby steps.. πŸ™‚

    #365428
    tbird2340
    Participant

    @PhilC wrote:

    Tom,

    Are you taking any antibiotics currently?

    Phil

    Sorry Phil.. I missed this post.

    No, currently I am not. I stopped as of my last appointment (10/2). Currently I’m taking:

    LDN 3mg
    Ibuprofen 800mg x 3
    Misoprostol 100mcg x 3 (to help with liver from Ibuprofen)

    Vitamin D 5000iu
    Vitamin C
    Amazon A-F
    Kril Oil (2 a day for first month)
    Fish Oil (2000mg per day)
    Probiotics 2 a day

    #365274
    tbird2340
    Participant

    4 doses and no relief yet.. Just posting as an FYI.

    πŸ™‚

    #365270
    tbird2340
    Participant

    Got my LDN yesterday and took my first does last night at 10pm (3mg)..

    Feel the same this morning, no changes. I realize it doesn’t happen overnight for everyone.. Just posting my first dose! πŸ™‚

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