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  • #316222
    wendi
    Participant

    Patti,

     

    Thank you very much for your post and detective work on ccp.  I am one of those whose doc told her that because her ccp was over 100 I have severe disease and will have awful joint destruction.  Talk about scaring the crap out of someone.  I am 39 have 2 kids in school and have to work.  I cried.  I can't be crippled.  I am glad to hear the anti-ccp is not only found in RA.  My doc told me it was!!  Like you I feel like I should find a llmd too.  I live in Fl and there aren't many down here.  However I grew up in NY and CT and had pulled my a tick off my legs and head growing up.  more recent down here in FL too.  I am alays in the woods hiking and camping and such.  not so much now because I am flaring, but up until about 3 months ago.  I also hate to pay out of pocket because my pockets don't run deep.:D

    Again thanks for the info.  It makes me feel much better.  Hopefully this flare will subside and my mino will start kicking in and I'll feel much better!!

    Take care.

    wendi

     

    #316223
    Patti D
    Participant

    Wendi,

    You won't be crippled.No way, no how! You will continue to be the best MOM your 2 kids have ever seen:D:D That's one smile for each!  I have 3 adult kids who have been pretty helpful in all of this. When you start to feel better the “cloud” will lift. Treat yourself well and really start to listen to the signals your body tells you. Can you nap with the kids or are they at the busy age? Oh, yeah. All ages are busy.

    I am not surprised you have thought of the lyme correlation. Did you read the book Maz has been talking about, “Cure Unknown. Inside the Lyme epidemic” Keep us posted Wendi. You WILL GET BETTER!!!

    Happy days!

    Patti

     

    #316224
    lynnie_sydney
    Participant

    Tiff – what I saw on TV last night about the alzheimer's drug is that, in the trial, the drug was able to unscramble the knotted neural pathways. What they showed looked like a ball of wool after a kitten had got hold of it! Whatever, it is likely to give Alzheimers sufferers their memory back, at least for a few years. Whcih means quality of life for them and their loved ones. I cant argue that one.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #316225
    Tiff
    Participant

    Lynnie,

    Your news article sounds much better than the one I read.  Perhaps it was a different drug.  This one said they were back at the old drawing board!  Huh.  Weird.  But I hope they are making progress!

    #316226
    lynnie_sydney
    Participant

    Tiff – will try and dig something out on it. Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #316227
    Maz
    Keymaster

    [user=287]Patti D[/user] wrote:

    One thing that is really eating at me is the feeling that I should reallly have an LLMD. That's because of Pam Weinthraups book and now your success. I have the name of the one LLMD in Wisconsin, but wonder if I am up for this. What do you think? I am continuing to improve with some peaks & valleys but wonder do I have to start all over with another doctor. I can't imagine taking the amount of antibiotics you did as well as the accompanying herxing. I've got to work girlfriend and really dont's know how I could do that intense treatment. I am doing the 200mg bid now and hoping I eventually can get that down to m-w-f but the minute I” play” with the dosage I Ifeel like crap 2 days later and no doubt it is a herx. I like what John said, kill the microbe not the patient.”                      

    Hi Patti,

    I know exactly how you feel about tending to avoid all the harbingers of doom and gloom – we really must be cut from the same cloth! :roll-laugh: I know to a large degree it was denial for me in the early stages…I mean, just to be shot down so fast and without any notice, in the prime of life (at any time of life!) is enough to send one scurrying into the sand, plugging up the ol' ears and shouting LALALALALA! Yup, that was me in basic survival mode….and I think also partly going through the early stages of the mourning process…just losing the quality of life I had always known and…yes….took for granted. We are amazing creatures, when I think about it. There is such purpose in how our minds function…or shut down for a time…just to enable us time to fully absorb – in small increments so we can cope – such challenging times. Just finding this site and learning of a different way to view the disease that had pounced unannounced into my life was a huge miracle, really.   

    Patti, I'm so glad you found the site, too!!! Not only do we have one another to compare notes, but the fact that you have this medical background means you can share your great insights that are just so valuable to us all. I could not believe your story about the methotrexate IV spilling on your hand and causing a second degree blister. What in heavens name could it be doing to the innerds? And, this is what they are putting in little bodies? Of course, I knew it was a cancer drug, but until you hear stories like this, it just doesn't register just how potent a drug it is.

    Ooooh…do you still have the link to the Oxford Journal article about anti-CCP not being predictive of disease progression? Also, the one where it is elevated in some infections? Some of the very first tests my LLMD tested me for were Hep C and TB, so now I know why. I thought he was just arbitrarily ruling things out, but there was method in the madness. I guess there can be quite a bit of overlap in test readings with some of these other conditions. 

    Patti, you know, right from the very beginning I didn't know if I was doing the right thing seeking out a LLMD or whether I should be going to an AP physician. I questioned this for some time as, like you, I knew I had Lyme and possible associated diseases and it had triggered my RA. I started going to my doc before I found this site and he was so convinced he could bring me to remission, I just knew I had to work with this very positive, hopeful doctor. So, I have to admit, it was more how comfortable I felt with this guy in the beginning than whether I was on the right path or not. I've stayed with him, because he works with me as a partner and will consider protocol changes I suggest seriously. He's currently helping me with AP, because I after a year of continuous herxing, I was just so tired and couldn't take any more. In effect, what had happened was that I'd entered into what Dr Brown described so well…the hypersensitivity phenomenon that many rheumatoid patients experience on higher dosing levels.

    While the antibiotics used for Lyme and rheumatoid disease are very similar…that is, if the AP doc employs combos of abx….the dosings are quite different, with Lyme treatments being much higher in dose, continuous dosing or using wide spaced pulsing (two weeks on abx and one week off, for example). The antibiotics are also, in general, switched up on a regular basis with Lyme. The idea isn't to find a tolerable dose, but to continually find the right mix that will continue to elicit herxing until bloodmarkers are back to normal or symptoms are completely relieved for a good period of time.

    For someone who needs to continue functioning in a job, as you do, this is a huge consideration. I was fortunate in that my work was flexible and the family didn't depend on my meagre income. Being laid up, as I knew I would be, for months upon months, wasn't going to harm the family….except in that they had to take on all the things I normally would do around the home. That was hard enough for them, but everyone adjusted over time.

    Although it must be a very individual choice, one thing that may be important to consider are the associated diseases that tagalong with Lyme that may not respond to the tetracyclines alone. Low dose, pulsed therapy is certainly a consideration for the rheumatic to avoid hypersensitivity in the long run, but some of these coinfections just don't respond to bacteriostatics and bacteriocidals….an anti-protozoal may be needed for babesia, for instance. While the idea is to retrain the immune system to function as it should…to be able to take on bugs alone without help…Lyme and its 'friends' are the kinds of bugs that seem to cause acute infection that requires immediate intervention. If a person is lucky enough to have a strong immune system, becomes infected with Lyme and suffers no more than a flu-like illness that initially goes away, it now known that the infection never goes completely, but remains dormant in the body for years…sometimes decades…and can explode into existence as soon as the immune system does become compromised. This is because of the nasty little cystic form of the spirochete, which can't be eradicated by antibiotics alone. In fact, it is thought that antibiotics, themselves, can cause the spirochete to ball up and revert to a cyst to protect itself in this state indefinitely. This is why LLMDs also use “cyst-busters” in their combo therapies….and, as Pam Weintraub explained….she may be in remission now, but who knows down the road? Hence the title of her book…

    I don't mean to add to your concerns, Patti. I think if I were in your shoes and was progressing as well as you, I would stick with the program as it is. If, at some point down the road, I found myself regressing or new symptoms started arising, I'd probably seek out an LLMD just to cover the corners and fit in a few combo therapies in addition to AP. I also think it's important to “kill the microbe and not the patient,” as long as the microbes involved are being covered. I think the thing is that AP has been around for decades and countless people have reached remission on it…their immune systems recovering enough to be able to fight off whatever pathogens are left behind. Today, standard AP is minocycline (or another tetracycline) and possibly IV Clindy. A few AP physicians do combo protocols, but it was apparent from Dr Brown's notes that he often employed combo therapies and that he felt that there was no “one size fits all.”  I just happened to head right to a LLMD (before knowing anything about AP) who I trusted and has been very open, listens to my concerns, admits he doesn't have all the answers and is willing to explore other possibilities that he feels are safe, and has been very good to me…..and is within a reasonable distance to home.  

    Sorry for the lengthy post…I was mostly away from the pc yesterday, so a lot is flooding forth!!! 😉 Not sure if I helped you in your decision-making process or muddied the waters. Just as with bloodmarkers being 'somewhat' helpful, but not the be-all-and-end-all, it's really how we are feeling that matters most. If you're on an improvement trend and its tolerable, then this is the most important thing, because being engaged in life and feeling better is key.  In one way, though, you're fortunate, because you know your “demon” :angry:, so if you start backtracking (as some pathogens seem to emerge opportunistically once others have been suppressed sufficiently), then this would probably be when I'd look to investigate further to cover other corners.

    Sounds like you are streets ahead of me, Patti! I don't think I'm up to miles of hiking just yet! I might be able to paddle a boat, but slow walking on the tredmill for a mile or two is about it for me just at the moment. So, my fingers are crossed for you that you will also be very happily surprised by your next bloodwork readings!

    Peace, Maz

     

    #316228
    Trudi
    Participant

    Hi Tiff and Lynnie–

    I also read about the new drug for Alzheimer's.  I'll paste a portion of the article–

    The drug, which has been around since the 1930s and is used to treat urinary tract infections and also to make blue ink, allowed people with moderate Alzheimer's disease to remain stable for nearly two years while those who got a placebo continued to decline, according to lead researcher Claude Wischik, a professor of psychiatric gerontology at the University of Aberdeen in Scotland.”

    http://www.jsonline.com/story/index.aspx?id=777548

    If this drug works for urinary tract infections, it's fighting bacteria.  I've been watching the Alzheimer's/bacteria connection for awhile now.  My husband lost his father and four of his father's siblings to Alzheimer's.  If my husband would show signs, I think I'd look into getting an AP doctor for him!!

    Patti–

    By the way, the LLMD that I will be seeing is also an AP doctor. 

    I've very much enjoyed your recent posts–lots of good information–thanks for taking the time–

    Trudi

     

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #316229
    Maz
    Keymaster

    [user=442]Trudi[/user] wrote:

    If this drug works for urinary tract infections, it's fighting bacteria.  I've been watching the Alzheimer's/bacteria connection for awhile now.  My husband lost his father and four of his father's siblings to Alzheimer's.  If my husband would show signs, I think I'd look into getting an AP doctor for him!!

    Trudi….you're really fortunate to have found both an AP Literate and Lyme Literate physician! These kinds of docs are like gold dust! 

    Patti…I retract what I said above! If you within reach of Trudi's doc, then it may be worth some serious consideration.

    Trudi, I thought the same thing as you when I read the article – thanks for sharing. have you come across any of the work by Dr Alan McDonald? I just did a search on him and the strong correlation he has made with many Alzheimer's patients to Bb. His work is also descibed in some detail in Cure Unknown. Not saying all Alzheimer's cases are due to Bb, but just that he was able to demonstrate a strong connection.

    http://www.molecularalzheimer.org/

    Peace, Maz

    #316230
    Trudi
    Participant

    Maz–

    Thanks for the information; what a busy website–makes me dizzy!!  Had I encountered this site on my own, I would have clicked right out of it–

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #316231
    Maz
    Keymaster

    Trudi, you're right. I tried to click on a few of the pics and articles and got frozen out….too much info on it. Shame, because McDonald's researches and findings were some of the most innovative with regard to the spirochete…so much so that he became a pariah after he did autopsies on stillborns and found a good number with Lyme spirochetes/cysts in their brain and other tissues…and then actually spoke out about his findings! He wound up moving to Texas to get out of the fray. This, according to Pam Weintraub.

    Have a great (hopefully, painfree) weekend, Trudi!

    Peace, Maz

    #316232
    Trudi
    Participant

    [user=27]Maz[/user] wrote:

    Have a great (hopefully, painfree) weekend, Trudi!

    Maz–

    Now wouldn't that be wonderful–a painfree weekend–sure hope so, but I won't hold my breath :blush:

    Thanks,

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #316233
    Patti D
    Participant

    Hi Maz,

    I sure appreciate your wonderful reply.  I have been so stressed since I read the thread yesterday as I knew I would be asked for those reference sites on the anti-ccp info and sure as he– I spent 2 hours last night and quite a while today while in and out of the heat(garden)I should have written everything down as i know with this group of “inquiring minds” you would want to read it yourself. 

     I can't find the one article that referred to the anti-ccp as being not an indicator of disease progression. I am not very good on the computer and yes, don't laugh, don't know how to cut & paste so when you guys give me a link it is great !  But I don't know how to recipricate so have to write down the address, etc. It is very stressful. Today I found articles on anti-ccp & TB, HCV, even downs syndrome and elevated anti-ccp. There is one on eye infections  and anti-ccp as well. There are numerous articles but basically I googled diseases associated with anti-ccp & disease progression with positive anti-ccp. Then to try to find the article I  looked up 2007&2008 to get the most recent. I am sorry but I am trying:headbang: There was only one that referred to it not being an indicator and all of the rest were the doom & gloom. I really have a hard time reading all of that stuff as it so scares me. I thought it was the Oxford Journals but I read so much, I could be wrong. I know it was a recent article.

    I found a new article today that linked coffee drinking to an increase in RA. That is one of the few pleasures I have left:X This is why I have tried to stay on this site only. What was that saying.”Where energy flows, disease goes!”

    I had to cut the mino down yesterday as I was sore all over. It worked and today, I am better but I took Aleve this am. Maz have a good weekend. I am off for some lake fun.

    Trudi,

    Thanks for the kind words. I hope you are better. Can you pm me that Fond Du Lac doctors name? What did he give you as an estimate for new patient testing? How long did it take to get an appointment? Have a good week end too!

    Wendi, Susan & Katie have a great week end and thanks for your responses. Hoping all have a break from pain & discomfort:blush:

    Thanks ladies. Your the best!

    Happy days!

    Patti

    I am going to try to keep looking for that article. When I find it I will get the address.

     

     

    #316234
    wendi
    Participant

    Patti,

    Have a great weekend.  There will be many more and better ones just around the corner!! Tak care.

    hugs

    wendi:P

    #316235
    Susan LymeRA
    Participant

    Hey! Count me in the celebration! Whoo-Hoo!  Those stinking #s  matter to me too.

    And John McDonald, I know just what you mean.  I was thinking just this morning how when I am in pain, I think I'm losing the battle and never going to be healed.  Then I have to give myself the pep talk and remind myself how a bad day nowadays is like a good day used to be. 

    Yet, when I am out of pain (most of the time) like you, I have to stop and work hard to remember what the days of pain were like and marvel at how far I have come.

    Maz, I hope those # drop all the way to normal for you real soon.

    Susan

    #316236
    Maz
    Keymaster

    [user=287]Patti D[/user] wrote:

     I can't find the one article that referred to the anti-ccp as being not an indicator of disease progression. I am not very good on the computer and yes, don't laugh, don't know how to cut & paste so when you guys give me a link it is great !  

    Oh, Patti…please don't worry about finding the articles! It's really not a biggy and was just for my own edification, really. 😉 So sorry if it caused you any angst trying to relocate the sites!!!!!!!  Gosh, feel awful about that. 🙁

    I remember when I was first learning how to use the pc…I was a complete nincompoop and don't think anyone could be as ridiculous as I was with it! :roll-laugh: I still don't know how to use office programs properly, like powerpoint, excel, etc., and my knowledge of Word is very basic. Wish I had the patience to sit for hours to learn these programs properly, but as long as I have basic skills, I'm happy with that. I'm the kind of person that can't even remember my own cellphone #. Well, I never have to call it, myself! My daughters have spent hours trying to show me how to do text messaging (I think I have it now!) and using the cell-camera, but I never have need of these things, so just seems pointless to learn unnecessary tasks when I just need a functioning phone in case I break down in the car! So, you aren't alone, believe me!!!

    Hope you're having better weekend weather that us in the NE! Horrendous thunder storms and torrential rains. I beginning to think I'm back in England where an old saying goes, “If it rains on St Swithin's Day, you'll get 30 days of pouring rain…something like that!

    Peace, Maz

     

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