Home Forums General Discussion lyme/hylori & what to do

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  • #299957
    sandy
    Participant

    One of the main problems as I see it, after 3 plus yrs. on mino MWF a 100mg. is that we don't have enough trained docs for this therapy…and we should find a way to inform people of that fact. I've been running around to naturpaths and others trying to coordinate my own treatment. several mos. ago a kinesiologist thought I had lyme and treated me with herbs and drops etc….but I progressively got worse and couldn't walk. I called him asking for something stronger and he called in Doxy…I went to a lyme spec. someone here on this lis found for me in Seattle…he suspected candida and said since I was on prednisone, I couldn't take the lyme test yet…I got so tired chasing things, I went to DR. F in CA, hoping to find out more. He found Hypylori after I asked for this test specifically (you have to ask) and he gave me the lyme test even though I was on Pred. The lyme test came back as one positive and one negative & when I asked for clarification like Do I have this…she didn't know… but the nurse from Dr. F's office said I couldnt' be treated for lyme until I cleared up the hpylori. (See the conflicts building: one says no lyme test while
    on pred.; the other gives it) My RA doc here may be on the list but he does not know how to do anything if there's problems which there currently are…and all 3 docs in seattle are the same…NONE of them do IV's for example. So since I am having great difficulty walking and my knees burn and I can't sleep, I really wonder why I have to be treated for hpylori FIRST as I don't think that causes my RA symptoms..but I know the lyme can cause the RA symptoms…any ideas out of all this? I need to calm down and THINK but feel like I'm going in circles, very expensive circles at that!

    #310346
    Susan LymeRA
    Participant

    Sandy,

    This stupid disease is so totally frustrating. 

    I am seeing a rheumatologist who is also a lyme specialist.  She says when you get this sick, it is never just one thing.  I think she is right and it is why “one size does not heal all” .

    I had been working with a doctor for 1 yr detoxing and building up my body.  I was also taking 100mg mino MWF.  I improved remarkably but not cured.  I started seeing the rheumy/llmd when I was bit by another tick and got very sick all over again.  She ran a gazillion tests and found H. Pylori, Babesia WA-1, EBV, QFever. 

    She first treated the H.P. and all my symptoms vanished.   I remained on that treatment for 7 mths.  She also wanted me on MTX and Enbrel to stop the joint damage, but through a series of mishaps, I only took 3 mths of MTX late in the treatment and never did take Enbrel.

    A recent gene test specific to my body's ability to detox revealed I am unable to detox among other things, prescription drugs.  Dr stopped all but doxy 100 mg MWF (she likes doxy better than mino).  She said, “I have been poisoning you”.  We are now focused on compounded meds to help me detox for the next 4 to 6 mths.

    Most recent tests came back positive for Chlymadia Pneumonia and Mycoplasmas.  In the lyme world, it is well known that as you clear some bacteria, others will surface.

    Most of us just do not have a simple one cause to our illness.  For us, much more must be done to get well.  Thank God for doctors who are willing to try to identify and treat all our causes.

    Susan

    #310347
    Maz
    Keymaster

    [user=163]sandy[/user] wrote:

    … but the nurse from Dr. F's office said I couldnt' be treated for lyme until I cleared up the hpylori. (See the conflicts building: one says no lyme test while
    on pred.; the other gives it) My RA doc here may be on the list but he does not know how to do anything if there's problems which there currently are…and all 3 docs in seattle are the same…NONE of them do IV's for example. So since I am having great difficulty walking and my knees burn and I can't sleep, I really wonder why I have to be treated for hpylori FIRST as I don't think that causes my RA symptoms..but I know the lyme can cause the RA symptoms…any ideas out of all this? I need to calm down and THINK but feel like I'm going in circles, very expensive circles at that!

     

    Hi Sandy,

    I'm a little confused by Dr F's nurse's response. Very often LLMDs use combo treatments for Lyme. In my own case, my LLMD started me out (after the standard few weeks on doxy my pcp 'finally' rx'd) with tetracycline and clarithromycin. The latter, clarithromycin, is used to help clear up H Pylori and recent studies have shown that RA patients with H Pylori do see a regression in their RA symptoms, as Susan found. I did very well on this combo, too, though I was never tested for H Pylori and (after adding bicillin shots and the Shardt Protocol at intervals during the past year) have reached the 85% improved mark. I'm now on low dose, pulsed mino and zith and hopeful of seeing even more improvements.

    However, as Susan also wisely said, Lyme is a very complicated disease that sometimes requires trials of many combos of different abx, because as one infection clears up, other opportunistic ones seize the chance to get the upper hand…especially if the immune system is seriously compromised by an infection like Lyme (some say 70 to 80% of the immune system is in the gut and longterm abx need to be watched carefully for this reason). Hence, the rationale to use combo abx and to be sure to be kind to the gut, eliminating any food sensitivities, ensuring to keep the gut populated with good fauna (probiotics) and controlling the bad flora (yeast).

    For this reason, if for no other, if one does have Lyme and/or coinfections, the optimal scenario is to be seen by a good Lyme Literate Physician. I know Dr F is regarded as one of the foremost AP docs out there, but I'm not sure if he's also Lyme Literate? Cheryl F. may know. AP docs ascribe to abx therapy for rheumatoid disease, but not all AP docs are LLMDs. Maybe he is very conversant in Lyme protocols, but his nurse isn't? 

    In any case, you can take 'certain' combos of abx simultaneously to treat both Lyme and H Pylori – for instance, mino and zith or mino and clarithromycin. There are, of course, some combos that should never be taken together and can make you very ill, but any doctor should be aware of these interactions.

    The thing with Lyme docs is that they generally want to hit the infections hard from every angle possible (some being more holisitically inclined like Susan's doc and some using just various med protocols) and will change up the protocol every so often to keep the bugs running. My LLMD's MO is to hit them hard and, in his words, “I'm going for the cure.” Although, he's also aware of individual patient needs and I needed a break from all the herxing, so he's now helping me with AP as a test to see how I go.

    It really is quite a process and I completely understand your confusion with all the conflicting info you're getting, as well as the runaround. The answer? Nothing in medicine is a certainty, but one thing is clear: every single doctor will have their own opinions on what dx we have, based on symptomology, and, second, how to treat it. In your same shoes, I think I'd do as much research on my own as possible and then decide which route I wanted to take and stick with that for a while. The worst feeling when you feel sick is that of powerlessness, so figuring out what you want and what feels comfortable, as an informed patient, is probably your best bet.

    Wishing you well on your journey!

    Peace, Maz

    #310348
    sandy
    Participant

    Hi Susan and maz, thanks very much for your replies..on the LLMD organization so you can get a lyme doc…that's the first doc I went to and it was around $400 just for one visit(which was just talking, no real tests) and $100 for the follow up….he is the one who said not to take the lyme test until I'm down on the prednisone…so this one neg. and one positive test came from Dr. F, who also knew I was on pred…..I'm not sure it's valid, but I'll try to find out as you both say, to try to study.

    Maz: what is” pcp finally Rx'd”….and is your lyme doc's prices around the same…I shouldn't worry about prices but he seemed very much a $$ man…Dr F. does not treat HPYlORI as I asked the nurse,(if he could just prescribe something for that) but he will treat the lyme as soon as he knows what I'm going to take for the HP. I like the advice about treating your gut well…as I recently went back ON wheat,coffee, breads, as the pred. is sort of a mask..& also I just sort of wilted…I guess it is all encompassing…how did you both find ONE doc to treat this when there are so many layers? I am going to a gen. MD for the HYLORI today, & will take the Lyme test…he knows I'm on the mino, so would you both (if u were me) just SUGGEST to him a treatment…a combo like Maz was talking about…..do we basically have to know enough to tell the docs what to do? thanks, sandy

    #310349
    Maz
    Keymaster

    [user=163]sandy[/user] wrote:

    Maz: what is” pcp finally Rx'd”….and is your lyme doc's prices around the same…I shouldn't worry about prices but he seemed very much a $$ man…Dr F. does not treat HPYlORI as I asked the nurse,(if he could just prescribe something for that) but he will treat the lyme as soon as he knows what I'm going to take for the HP. I like the advice about treating your gut well…as I recently went back ON wheat,coffee, breads, as the pred. is sort of a mask..& also I just sort of wilted…I guess it is all encompassing…how did you both find ONE doc to treat this when there are so many layers? I am going to a gen. MD for the HYLORI today, & will take the Lyme test…he knows I'm on the mino, so would you both (if u were me) just SUGGEST to him a treatment…a combo like Maz was talking about…..do we basically have to know enough to tell the docs what to do? thanks, sandy

    Hi Sandy,

    The costs for Lyme docs can be pretty expensive, because they often work “out of network” and you have to dig deep in your pockets to cover what your insurance won't when you try to claim it back. My LLMDs initial consult was in the range of $600 (not including IGeneX testing) and each successive appt has been approx $300. However, I chose to see this doc and make the investment after joining a Lyme support group where I was assured by a number of people that he was highly recommended and was great to work with. 

    As you probably already know, the treatment of chronic Lyme is hotly controversial and so, for docs who only treat Lyme as their main source of income, they tend to avoid insurance companies and 'fly under the radar'. For other docs, they just happen to believe in chronic Lyme (like Susan's Rheumy) and treat it along with all the other patients with different non-lyme complaints who come through their doors…so in these cases, insurance coverage may be easier to come by.

    What is important, therefore, is to really research in advance if a doctor works 'out of network' or not and if they employ the kinds of treatment protocols you would like to try. Some people feel disappointed with AP docs they visit on the list they've been given, because they just assumed they'd prescribe mino and that would be that. This isn't always the case – the doc on the list may have been known to presribe mino in the past, but this doesn't mean they believe in infectious causes and are actually AP-literate. The RBF tries to keep abreast of this, but must rely largely on patient feedback. Same deal, really, which is why it's so important to really figure out what course you want to take, try to get some recommendations and then research the doctors for yourself. For rheumatoid patients interested in AP therapy, it's crucial to read Scammel's books to become conversant in the AP protocol before choosing a doc.

    Who initially prescribed your prednisone? Just interested, as there are differing views on the use of prednisone in Lyme Disease. Generally speaking, most LLMDs try to avoid any type of immunosuppressant because, in known infections, suppressing the immune systems allows further proliferation of the disease. Perhaps you were prescribed it before you knew you had Lyme, though?

    Dr F may want you to have a gastro workup, which he may not do. Only speculating, but this may be why he's sending you off to get treated separately (to save you money). Your PCP (primary care physician) should be able to cover that for you under your insurance, although perhaps important to take into account that many docs believe that these types of infections can be treated with a short course of abx. The studies that were done on RA patients for H Pylori were followed for two years. Might be worth taking the study with you when you visit your doc…though I just saw that you were going to see him today. The study was re-posted below on another thread recently by Susan if you want to print it out. Nevertheless, you could still take the study when you go for followup to state the case for longer H Pylori treatment in your case.

    Yea, you're right…there are so many layers to our diseases and we're all so unique, so no 'one size fits all'. Finding a doctor willing to treat you holistically and who follows all the protocols you want to try would be the ideal for us all.  Susan was pretty fortunate to find a good fit with her rheumy. In many cases, though, we have to figure out much of it for ourselves…and hindsight is often a fine thing. There are a lot of really experiened folk on this board, though, who have great insight about diet, supplements, alternative treatments, etc…so it's worth listening in and asking away. It migth save you time and money later down the road.

    “PCP” is just shortform for “primary care physician”.  “RX” is short for “prescription” or “Rx'd” meaning “prescribed”.

    Peace, Maz

    #310350
    sandy
    Participant

    Thanks for the reply Maz, just got back from the PCP and it so happens he said 25 yrs. ago he sort of started treating hpylori with antibiotics and got great results…when he tried speaking to the GI specialists, they said it was “not approved” yet…but he kept treating his patients..he said most GI's would have sent me for a biopsy & he goes by the test..(I reminded him that he found this in 98, & brought in the test as he didn't have it in his files as he'd moved…so he prescribed amoxicilan and clarithromyacin bu I do believe it's only for 10 days….I will search for the study…and hopefully find it so I can push for a longer time..Dr. F. called and said I should go off Clindy and Mino until I finish the antibiotics for HP…..he said he would then treat the lyme….I forgot to ask with what…..but he said he didn't know of any studies where HP aggravated the symptoms of RA (too bad huh)…my PCP didn't know of any studies either..but he had heard that a longer duration was needed for HP…so longer for him was 10 days, not 7….He did say he would look for any studies…so if I can find Susan's post…that will be great…I understand what you're saying, about pick a plan and go with it….I have to go in one direction for now…and then be alert to how or why it failed or how to make it succeed..so I pray for energy to do that…it takes an energetic mind..oh, who prescribed the Pred….well, I was slowly getting worse and this was before the tests…I asked my old RA doc, the one on our list, to test for Lyme and he did with nothing showing..I told him that I heard that tests were really variable and of course he was offended and said the Mayo lab was the best in the country….so I've been trying since Sept. to get something going…it's really hard, …and perhaps in Dec/Jan when I saw the Lyme specialist I could have got the lyme thing going, but he didn't want to test as I was on the pred….one interesting thing: I called the lab in No. Calif. and asked about the pred/and if it would impact the test in any way…they said that in spite of my pred, the test still showed one positive indicator and prednisone cannot make a positive out of a negative…it can only LOWER the amount….so in reality my test might actually be HIGHER..and he answered my question about TIME duration of the bite to the symptoms.I told him I knew for sure I had a tick in my hair in April of 07 on a trip to Ohio….and then in late aug/early sept. I started getting bad symptoms….unlike any other typical RA flare…this one shut me down…got me off my feet…my knees burn at night…so it just FELT different..and the lab person said that's a reasonable time frame..meaning yes, it could have started at that point in April of 07 when I was traveling….he did say that his lab had another test where you pinpoint what antibiotics to take…anyway, yes, the pred was prescribed for the intense pain and I couldn't walk..I am on 15 and slowly declining it every 3wks…..and I am on that and the naproxen for the pain….it's still painful….not unbearable though…thanks, sandy

    #310351
    Maz
    Keymaster

    [user=163]sandy[/user] wrote:

    Thanks for the reply Maz, just got back from the PCP and it so happens he said 25 yrs. ago he sort of started treating hpylori with antibiotics and got great results…when he tried speaking to the GI specialists, they said it was “not approved” yet…but he kept treating his patients..he said most GI's would have sent me for a biopsy & he goes by the test..(I reminded him that he found this in 98, & brought in the test as he didn't have it in his files as he'd moved…so he prescribed amoxicilan and clarithromyacin bu I do believe it's only for 10 days….I will search for the study…and hopefully find it so I can push for a longer time..Dr. F. called and said I should go off Clindy and Mino until I finish the antibiotics for HP…..he said he would then treat the lyme….I forgot to ask with what…..but he said he didn't know of any studies where HP aggravated the symptoms of RA (too bad huh)…my PCP didn't know of any studies either..but he had heard that a longer duration was needed for HP…so longer for him was 10 days, not 7….He did say he would look for any studies…so if I can find Susan's post…that will be great…I understand what you're saying, about pick a plan and go with it….I have to go in one direction for now…and then be alert to how or why it failed or how to make it succeed..so I pray for energy to do that…it takes an energetic mind..oh, who prescribed the Pred….well, I was slowly getting worse and this was before the tests…I asked my old RA doc, the one on our list, to test for Lyme and he did with nothing showing..I told him that I heard that tests were really variable and of course he was offended and said the Mayo lab was the best in the country….so I've been trying since Sept. to get something going…it's really hard, …and perhaps in Dec/Jan when I saw the Lyme specialist I could have got the lyme thing going, but he didn't want to test as I was on the pred….one interesting thing: I called the lab in No. Calif. and asked about the pred/and if it would impact the test in any way…they said that in spite of my pred, the test still showed one positive indicator and prednisone cannot make a positive out of a negative…it can only LOWER the amount….so in reality my test might actually be HIGHER..and he answered my question about TIME duration of the bite to the symptoms.I told him I knew for sure I had a tick in my hair in April of 07 on a trip to Ohio….and then in late aug/early sept. I started getting bad symptoms….unlike any other typical RA flare…this one shut me down…got me off my feet…my knees burn at night…so it just FELT different..and the lab person said that's a reasonable time frame..meaning yes, it could have started at that point in April of 07 when I was traveling….he did say that his lab had another test where you pinpoint what antibiotics to take…anyway, yes, the pred was prescribed for the intense pain and I couldn't walk..I am on 15 and slowly declining it every 3wks…..and I am on that and the naproxen for the pain….it's still painful….not unbearable though…thanks, sandy

    How funny!! I just went to look for the article Susan posted and it was under the thread you started entitled, “H Pylori”!!! Here's the link:

    http://www.rbfbb.org/view_topic.php?id=114&forum_id=1

    I guess you must have missed the end of that thread? 😉

    Great that your doc didn't have to do a biopsy and is well up on H Pylori tx (tx = treatment)!!!  Let's hope he'll be okay about treating you for a bit longer to make sure it's well out of your way. The good thing is that clarithromycin is also used as a Lyme tx, so you're on track with getting underway with treating your Lyme, too…then Dr F can hopefully take over. Amoxicillin is also good for getting at any strep you may be harboring that may block progress on AP, so you're covering some good corners here.

    All in all, it may have felt like you were paddling down the wrong creek, so to speak, but looks like all will be well for you…no worries. Will be good when you can get off the pred, but go easy, lowering it gently. Rheumatic.org has some info about how to do this safely. I know what you mean about the painful, burning knees with Lyme/RA….it's horrendous. For months and months, I had to come down the stairs crab-fashion. Mine are slowly improving, but still find it hard to be on my feet for too long. My biggest accomplishment of late was to go to BJs at the weekend and walk around for an hour or two shopping – couldn't wait to put my feet up at the end. Only a few months ago, that would have been an impossibility, though.

    We'll both get there, Sandy…it's hard in the early days on abx therapy, as it can feel as if you're getting nowhere fast and sometimes things get worse before they get better.  You may find this as you change up your abx, if herxing sets in. Hang in there, though…just means they're working.

    Peace, Maz

    #310352
    Susan LymeRA
    Participant

    I just did a search on the internet for “Eradication of H. Pylori may reduce severity of RA and a ton of articles came up.  Here is a link to just one of the many articles.

    http://www.docguide.com/news/content.nsf/news/852569780017887A85256C16005612E6

    #310353
    Patrice
    Participant

    I took an herb called Samento for about 1 year.  Then I was totally pain free and symptom free for another 2 1/2 years, with no medication.  It is specifically for lyme's disease.  I believe it totally gave me back my life.

    Now I am in a flare after these many years and the Samento didn't kick it.  (I moved and I think the stress and physical demands put me “over the edge.”)   Maybe something else is going on.  I know of a dear friend who had the same cessation of symptoms on the Samento.  So, if you are dealing with Lyme's, it seems that you may want to look into it.

    #310354
    Pip
    Participant

    I see Dr. F and as much as I love him, he's old school.  I'm also thinking a LLMD is a better fit – if you don't like the one you have – switch.

    Dr. F 'talked sternly to me' about staying on Mino when I got my 6 month herx from hell pneumonia.  Apparently some antibiotics are not to be mixed.  The stuff for pneumonia does not mix with tetracyclines. 

    He is also extra conservative with your health.  He's not into diflucan because similar meds in different classes once reacted with each other and in the case of diflucan, can lead to heart arrythmia.  Bad, you're dead on the floor, arrythmia.  But they were older versions of those classes.  See my point – conservative. 

    Another thing – I tested postive for strep which is usually treated with Penn.  We got my PRA undercontrol but my strep titers were slowly working their way up.  If you think about it…that's saying AP would have eventually failed if he didn't address the issue.  So, now I'm doing Zith and Mino. 

    There's a reason he's doing what he's doing…when we're in pain we don't realize it.  When you're better maybe start mixing and matching.

    Also – are you on a LOT of probiotics?  If you're not 'regular' you're not on enough.  JMHO.

    Pip

    #310355
    Maz
    Keymaster

    [user=23]Pip[/user] wrote:

    Another thing – I tested postive for strep which is usually treated with Penn.  We got my PRA undercontrol but my strep titers were slowly working their way up.  If you think about it…that's saying AP would have eventually failed if he didn't address the issue.  So, now I'm doing Zith and Mino. 

     

    Hi Pip, Sandy, etal,

    Sorry to hijack the discussion here…

    Just a quick question for you Pip. What pulses/doses did Dr F rx for your mino and zith combo?

    I just added zith to my mino. On rheumatic.org (I think Dr F wrote the schpeel for their FAQs?), it's suggested to add zith on Tues and Thurs at 250mg bid. This is what I'm trying now. Does that sound right to you?

    Peace, Maz

    #310356
    sandy
    Participant

    Hi Pip, susan, Maz, others….I wanted to like I did like Dr. F. a lot and I sort of took the lead of someone on the list who was asking who is the very BEST doc for our treatment and it came down to 3, so I chose the LA area, closest to me…and got advice from someone else on the list by phone as I was pretty much down & headed toward the more trad. things like humira…I just wanted to give this the best try for my life & despite the fatigue & pain, I'm trying to be as pro-active as possible, as it's so easy to give up…so spirit wise I'm doing well, body wise, I wish I could sleep better, am hoping that will come…

    Thanks susan for the RA-Hpylori article…am sending this to my PCP, but by the way for HPYLORI, I have only 10 days of the Amp. and the Clarith…..and I see the study had the patients on for 7 days…I'll check more of the articles posted and read them (thanks for that!) & see if I should ask for MORE days…The PCP said after the 10 days to get something called Interplexus, Rejuva…ever hear of that? I am then to get back on the mino and Clindy and call Dr. F for they Lymne treatment..so I guess by taking action, it just creates a ripple effect…I had the sense to ask for a lyme test because of this list…and by reading scammel I knew how other bacteria like strep can interfere with treatment…and I kept an old 1998 test lab from my PCP that listed HPYLORI..after scammel's reading, I wondered if HYPLORI could also impact RA, so I asked for this test from DR. F….so I agree w/ Maz…you have to do the research as all docs on the list are not alike..many will not know what to do when we encounter flares or problems..except head straight for the more trad. drugs..(I understand that some may be needed fr. time to time but I was head straight for NOTHING else but that, no combination of mino etc..)I really admire those on the list who have taken the time and have the energy to study…& from time to time my posts may sound “negative” but overall, I am learning little by little and have come much further from the days of just complaining about the docs. and how little they know about this therapy…that is not enough. THis hypylori study/RA is exciting to know about as my PCP said he didn't know of such studies but added “he would look..”….I liked that he added that so I think he will be open to knowing of this study that Susan sent…Thanks & I hope we all keep learning…keep studying…keep trying…sandy

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