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This topic contains 16 replies, has 5 voices, and was last updated by  ellie6 3 years, 11 months ago.

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  • #308554
    ellie6
    Participant

    Im really unsure what to pursue in regards to treatment at this point. In 2011 I was diagnosed with lyme disease after a tick bite resulted in horrible bilateral buritis. My Elisa was euivocal and my western blot only showed band 23. I was negative for coinfections thtough teting but was poitive for exposure to RMSF’, EBV, HSVV6 and mycoplasma. I did a yr of various orl antibiotics as well as bicillin injection. I moved on after a year and slthough I had some impovement I continued to struggle eith severe SI joint inflammation and digestive issues. I began seeing a LLNP that felt my problems stemmed from inflammation and I went gluten, soy, dairy,starch and grain free about a yr ago.
    I have treated possible candida issues with nyststin and diflucan. I was also diagnosed with hashimotos and switched from levothyroxine to Armour thyroid. I recently completed course of rifaximin for SIBO. Sadly my digestive issues have still persisted. I have noticed a definite correlation between my gut issues and my SI pain. When one is flaring the other one follows. I have had a colonoscopy and endoscopy which were negative for chrohns , colitis and celiacs. My Rheumatologist feels my SI joint issues are due to psoriatic arthritis due to my history of skin psoriasis as well as the presentation of sclerosing ofthe SI joints on imaging studies. He feels I should go on a med like Enbrel.
    At this point I dont know wht to do. My colon feels inflamed, my SI joint is flaring and zI feel like Ive hit a wall. I discussed the AP at my last appt with my LLNP and while she said she may be open to it she was very concerned about it causing more issues for me dueto my stomach problems as well as history of candida.
    I have tried LDN in the past but even at the lowest dose I suffered major increases in pain.

    #373835
    Maz
    Keymaster

    @ellie6 wrote:

    My colon feels inflamed, my SI joint is flaring and zI feel like Ive hit a wall. I discussed the AP at my last appt with my LLNP and while she said she may be open to it she was very concerned about it causing more issues for me dueto my stomach problems as well as history of candida. I have tried LDN in the past but even at the lowest dose I suffered major increases in pain.

    Hi Ellie,

    Minocycline has been shown to inhibit the growth of candida albicans in vitro, so it might be worth showing this study to your LLNP and asking if you could try low dose, pulsed mino (e.g. just 50mg to start on M-W-F) along with a pulsed diflucan (1 or 2 tabs a week) to see how well this is tolerated for a few months. If that is tolerated, then increasing the dose to 100mg on M-W-F might be a way to go. It’s a very slow therapy, so no dramatic change would be experienced for at least 6 to 8 months and changing too much during this period isn’t always a good idea. Slowly does it, in other words.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC478100/

    This may or may not be your answer, but minocycline is the preferred abx for rheumatic diseases due to its superior lipophilic props (ability to cross cell walls). What this means is that lower doses may perhaps be just as effective as higher doses of doxy.

    What probiotic are you using and in what quantity?

    Your signature outlines a lot of different abx within the short space of a year, but not sure if these were used individually or in combination. LLMDs like to change things up regularly to keep the bugs running and usually using higher doses. Some rheumatics just can’t deal with this and the inevitable building hypersensitivity can create its own set of problems. Trialing a low and slow approach after a brief washout from the daily 100mg doxy before trialing low dose mino may be what is needed at this point to get on track and reduce the bacterial allergy in a slower, more measured way. There is also the option to trial the 5 day IV clindamycin series, which may provide a boost to the oral therapy, if needed, too. This is the way Brown would have done it.

    This is just an idea, of course, and you must do the figuring out for yourself.

    Btw, have you considered sending in a stool sample to the American Gut Project?

    http://americangut.org/

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373836
    m.
    Participant

    Hi ellie6,

    I’m sorry to read you are not feeling well.

    Is your signature current? Are you still on some sort of antibiotic protocol? It’s unclear to me from your post how long you were/are on AP.

    When I’ve had stool tests in the past, the test measured any candida/fungal overgrowths, as well as bacterial overgrowths, levels of good bacteria, inflammation markers, various parasites, levels of digestive enzyme output, etc.

    If you have not had tests like this done, that might be an avenue to explore with your doctor. It can ease mental stress and anxiety about treatment, and provide some guide posts for moving forward.

    After all, if you were given blood pressure medication, your doctor would do a baseline test, give you the meds, then do a follow-up test to see how the med is working. The same can be done for treating candida, and SIBO, and treating gut inflammation, and seeing if one is taking adequate amounts of probiotics. Less guessing, and more measuring.

    Speaking of probiotics, are you taking any, and have you considered anything like a course of VLS3 Double Strength?

    Maybe in our lifetime, the researchers will better understand what happens in our guts that makes us susceptible to rheumatoid disease.

    #373837
    ellie6
    Participant

    Thanks for the replies. No I am not currently on antibiotics. When I was on them for lyme they were used together usually several together. I initially strted on doxy prior to seeing an LLMD. The horrible bursitis I was having disappeared within 48 hrs of beginning it and within 72 hrs it was back but worse than before. I’m a little frightened to go back to that point.
    Maz am I understanding correctly are you recommending doxy first daily? If so for how long?
    I have had stool testing done by Genova in the past. The only thing that showed up was fungi 4+ but it was unidentifiable. I have received differing opinions on this. My LLNP said it was yeast but my nutritionist said it was not…Many years agoI did have blastocystis hominis show on a stool culture which was treted with flagyl and has not shown up again on testing. Right now I am on daily diflucan100mg. Perhaps it is not agreeing with me.

    Probiotics are a hit and miss. I think probably because ofthe SIBO. Sometimes they help and other times I feel much worse.

    A gyn I saw recently mentioned another stool test through Genova that seems a little more thorough. Perhaps I will look into it. On top of identifying issues it also list what it will respond to. Of cours if nothing shows up then I am back to square one. I wish I knew if my GI issues were connected to my pain.

    am back to suare one.

    #373838
    PhilC
    Participant

    @ellie6 wrote:

    I began seeing a LLNP that felt my problems stemmed from inflammation and I went gluten, soy, dairy,starch and grain free about a yr ago.

    It is likely that you are still eating foods to which you are allergic/sensitive. Don’t overlook the vegetables that belong to the nightshade family (Solanaceae). Tobacco is also a member of that family. See: The “No Nightshades” Diet. Also, watch out for corn.

    @ellie6 wrote:

    I have tried LDN in the past but even at the lowest dose I suffered major increases in pain.

    I’m guessing that you mean 1.5 mg, which is far from the lowest effective dose. The idea that 1.5 mg of naltrexone is the lowest effective dose is really just the opinion of one doctor, and he happens to be wrong. Unfortunately, some incorrect information about LDN has been spread all over the web.

    Here’s a little more information:

    How LDN works

    “Vivid dreams, night time sleeplessness, nausea, headaches, anxiety, diarrhea, jitteriness, rapid heart rate, day time sleepiness and depression have all been reported as undesirable effects associated with initial LDN use. Adjusting the starting dose and increasing gradually with smaller increments may minimize these effects. Many have found that by starting with 0.5 mg or even as low as 0.1 mg and increasing very slowly by increments of 0.25 or 0.5 headaches and other undesirable effects are avoided and they are more successful adjusting to LDN. Dosing every other day, two on and one off or every third day is also being discussed.”

    Source:
    https://groups.yahoo.com/neo/groups/NTX_Naltrexone/info

    Phil

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

    #373839
    Maz
    Keymaster

    quote=”ellie6″]Thanks for the replies. No I am not currently on antibiotics. When I was on them for lyme they were used together usually several together. I initially strted on doxy prior to seeing an LLMD. The horrible bursitis I was having disappeared within 48 hrs of beginning it and within 72 hrs it was back but worse than before. I’m a little frightened to go back to that point.

    Yes, that would be the herx reaction…a necessary evil, though your dose would have been higher than Brown used, as you were treating Lyme. A herx is a good sign the abx is reaching its target and is a transient worsening of symptoms that passes with time (and detoxification, as appropriate).

    Maz am I understanding correctly are you recommending doxy first daily? If so for how long?

    What I was suggesting is that you talk with your doc about was trialing a low, intermittent dose of minocycline. You had written that you were taking 100mg doxy in your signature line, so was guessing you were either currently on it or that it was too high a dose when you tried it before. Minocycline in a low dose might be more effective in terms of more tolerable herxing and also in terms of its anti-candida effects. It would work synergistically with the Diflucan. Your LLND may also be more open to using a low dose protocol than a higher one, especially as there is the study on mino for suppressing candida.

    I have had stool testing done by Genova in the past. The only thing that showed up was fungi 4+ but it was unidentifiable. I have received differing opinions on this. My LLNP said it was yeast but my nutritionist said it was not…Many years agoI did have blastocystis hominis show on a stool culture which was treted with flagyl and has not shown up again on testing. Right now I am on daily diflucan100mg. Perhaps it is not agreeing with me.

    The American Gut Project test is a test that looks at the DNA of all the bugs in a person’s gut. So, according to the literature on the site, they provide a printout of the person’s gut fauna and it may reveal more info on overgrowth type, pointing to an appropriate treatment and diet type for the person. This sort of test is more comprehensive than a test that might be looking for one particular organism or flora-form, for instance. This project is quite exciting, because they are also building a data base that is correlating disease types with gut composition.

    Probiotics are a hit and miss. I think probably because ofthe SIBO. Sometimes they help and other times I feel much worse.

    Just wondered if you had used a high quality probiotic for the SIBO, such as VSL#3?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373840
    m.
    Participant

    Hi ellie6,

    Although some people respond to the therapy quickly, for others it can take 2-5 years to see significant improvements.

    Getting better can be masked to varying degrees by the Herx reaction, other complications, and setbacks. If symptoms don’t improve quickly, we can look for small windows during the day of feeling like ourselves again, less morning stiffness, and labs slowly improving.

    And although some are able to completely drop antibiotics after gaining remission, many stick with the basic protocol for life, or drop to a lower maintenance dose for life.

    I hope that helps!

    #373841
    ellie6
    Participant

    Thanks for the suggestions. Phil I dont eat any nightshades or corn but do wonder if there is something I am still ingesting….not sure what else I couldmpossibly cut out.

    Maz I did update my signature line. Yes you are correct I was on doxy in the past and the dose was too high. I also did rifampinwith minocycline which was definitely too much. Interesting bout the mino supressing candida…

    All I know is the past two days my SI joint has been screaming in pain and for the first time I having awful pain long the top of my foot…I have no idea why..I need to find something to take the pain away as it is really makng my job difficult to do as it involves some physicsl labor. I have an appt next week and I will push for the AP. I am wondering about trying LDN again. But I do know it would not ve good to introduce two new things.

    #373842
    m.
    Participant

    Hi ellie6,

    Do keep us posted on what you and your doctor decide. If you’re up for it, I suggest trying to keep good records. Since improvements are so often gradual, it’s human nature to fail to notice what is not there.

    Have you ever had that experience where a friend will ask you about a problem you’d been having (Are you still having those headaches all the time?), and it’s only then that you realize that particular thing isn’t bothering you any longer (Huh. It’s been months since I’ve had a bad headache!).

    It’s normal to be anxious for immediate results. Coming up with a reasonable plan for a protocol, keeping good records of symptoms and labs, and not making too many changes, can really help. Then maybe give yourself a reasonable time frame, then re-evaluate.

    Good luck!

    #373843
    PhilC
    Participant

    @ellie6 wrote:

    Probiotics are a hit and miss. I think probably because ofthe SIBO. Sometimes they help and other times I feel much worse.

    If you’re trying to avoid dairy products, most probiotics are unacceptable because the bacteria are cultured in a milk medium. And apparently even some probiotic products that are supposedly “dairy-free” or “milk-free” aren’t totally free of milk proteins or peptides. Here’s a tip: Look for probiotics labeled “Vegan.”

    Here are three probiotics suitable for vegans:

    Gr8-Dophilus (Now Foods brand)
    Power-Dophilus (Country Life brand)
    Saccharomyces Boulardii + MOS (Jarrow Formulas brand)

    I use all three of them.

    Phil

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

    #373844
    ellie6
    Participant

    I recently ordered scdophilus http://www.giprohealth.com/scdophilusnext.aspx hopefully it will be ok.

    I have an appt with my doctor tomorrow and wanted to go in there with all my ducks in a row so I would know what to ask for and now Im feeling confused. I ordered the Arthritis Breakthrough book by Scammell hoping to read it this weekend nd tke notes to bring but it did not arrive yet 🙁 My doctor is not going to have time to read through a on of literature so I was hoping to simplify things but it seems like there are a few different protocols. Not sure
    where to start…

    Also do I attempt the LDN again now along with the AP, before it or wait? It has greatly increased my pain in the past. Unfortunately anything that modulates the immune system seems to have that effect. Even vitamin D.

    My SI joint pain is flaring. Antinflammatories both oral and by patch applied to the area are not helping. My diet despite being starch, gluten, grain, dairy , soy, egg, and grain free has not helped either.

    Feeling really discouraged. At this point Enbrel seems appealing..

    #373845
    m.
    Participant

    Hi ellie6,

    I’m sorry you are feeling discouraged. AP has gotten many, many people to remission. It is not a quick fix though.

    On the main page, http://www.roadback.org , up top under EDUCATION you’ll find PHYSICIAN PACKET. You can print some things out for your doctor, or just refer him/her to the web site.

    As far as LDN, I don’t know about it’s efficacy for rheumatoid diseases.

    From your posts, it sounds like the immediate question is whether you want to give AP a try. If so, what exact protocol (which antibiotic at what strength plus dosing schedule). And, whether your current doctor is your source for the prescription and follow-up care.

    Best of luck and keep us posted!

    #373846
    ellie6
    Participant

    Thanks M. I looked over the physician packet. I was surprised to see that the mino is 100mg twice a day. I thought the protocol was low dose??? That seems very high.

    #373847
    PhilC
    Participant

    Hi Ellie,
    @ellie6 wrote:

    Also do I attempt the LDN again now along with the AP, before it or wait? It has greatly increased my pain in the past. Unfortunately anything that modulates the immune system seems to have that effect. Even vitamin D.

    Making a lot of changes at one time is usually not a good idea, and since you took LDN before and it made you feel much worse, this seems like a “no brainer” to me.

    See also this message I posted back in 2012:
    Re: LDN AND AUTOIMMUNE DISEASE

    @ellie6 wrote:

    My SI joint pain is flaring. Antinflammatories both oral and by patch applied to the area are not helping.

    What kind of anti-inflammatories?

    @ellie6 wrote:

    Feeling really discouraged. At this point Enbrel seems appealing..

    That’s understandable. Have you considered sulfasalazine? It is used to treat both AS and PsA, and since part of its action occurs within the intestines, it may help with your intestinal inflammation.

    Phil

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

    #373848
    kater
    Participant

    Hi Ellie
    wishing you luck tomorrow! Glad you were pointed to the physician pack up. The full protocol is 100mg twice a day but that doesn’t mean you need to start with that. If it were me I would want to build the dose slowly to see how I do, especially since you say you already have a lot of inflammation. And be reminded that it is a very slow therapy and some (many) people feel worse before feeling better. You just need to keep bacterial die off at a manageable level so important to detox and keep with the diet, take plenty of probiotics at least 2 hours away from the mino. You can do a search for past threads on detox.
    I agree with Phil–Ldn may be good at a future time but I would try to get established on the mino first–see what the doc says but that’s my thought. Let us know how it goes.
    We Care 🙂
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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