New class of antibiotic being developed

[Joe M]

We often bemoan the fact that few if any new antibiotics are being developed, but there are some people are working on a new one:

http://www.webmd.com/digestive-disorders/news/20090916/new-drug-targets-c-diff?src=RSS_PUBLIC

[JoanneM]

Hi Joe,

I am an old Dr. T. patient (scleroderma) from the beginning of his AP and have recently had a flareup with RA type symptoms and am just catching up on my autoimmune readings. A year ago I had a dental problem and had to take antibiotics over a couple of months, one of the worst for causing C Dif. I was able to get rid of the C dif in a couple of weeks with a very natural protocol. In considering going back to antibiotics (mino) after having had a dreadful time last year, I am going to start the regimin I used at that time that helped so much. To give you an idea how bad the C Dif was, I lost 8 pounds in one week I was so sick. The C dif cure for me was BioK probiotic and Cholesteramine (a drug that binds cholesterol in the gut but actually removes toxins as well). I took one Bio K each day plus the Cholesteramine twice a day in juice. It was amazing. I continued that for a month and have not had any problem with C dif since.

[Maz]

Joe, you might find this interesting if you missed it…according to this article, the need to create new antibiotics may soon be unnecessary as new understanding develops of how pathogens are able to resist them:

http://rbfbb.org/view_topic.php?id=3078&forum_id=1

Joannne, very nice to meet you and welcome!  🙂

The info you provided to treat your c difficile is very important. One person here comes to mind who would find this very interesting, as her MCTD problems began several months after a run-in with c difficile. A few people here are taking cholestrymine here as a part of their protocol to bind to toxins in the gut and speed their recovery and really glad it was so effective for you for your acute infection. I know this is a very painful, uncomfortable condition. So glad you are doing better now!

Peace, Maz

[Suzanne]

A cartoon:

http://pharmagossip.blogspot.com/2009/09/insider-is-worried.html

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[JoanneM]

Thanks for replying so soon. It is nice to meet you and any and all the “new to me” people here. I was in one of the early scleroderma studies with Dr. T. and have lost touch since feeling so well for so many years now. I had undiagnosed Lyme for many years that I think led into the autoimmune condition.

I can't tell you how important the Bio K is. I buy it at Whole Foods and at health food stores. From my experience there is no comparison to any other probiotic.

I also want to mention that when I got clued in on AP and Dr. T. I ordered Henry's book about scleroderma and cried and cried, because I felt such empathy and understanding about what other people besides me were going through. It is so uplifting to see people triumph. People here are questing and intelligent, otherwise they would not be here. They are miles ahead of those who don't take it upon themselves to help themselves.

I guess my own regimen for getting well would be AP, Bio K and Cholestyramine if needed, and vitamin D3. I used to get colds frequently (the last couple of years) and since starting a 4,000 units of D3 daily (plus getting in the sun for a couple of hours a week in Florida), I have not gotten sick. I have even been exposed to grandchildren with H1N1 coughing in my face, and caught nothing!

[Maz]

Joanne, this is so fascinating to hear that you were part of Dr T Mino in Early Diffuse Sclero studies! Also interesting that chronic Lyme was in your mix. :sick: Did you see last Fall's eBulletin with a case study linking systemic sclero to Lyme? It was in Europe, but has been so long denied here in the US that European strains can cause this serious disease that the study was like gold dust. Of course, Stoney Brook is now finding a certain Euro Stain of lyme has probably been around for a couple decades in the US now. :sick: Were you ever treated for possible coinfections of Lyme?

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

Richie is one of the old-timers who still frequents here and also sees Dr T. You may recall him. If not, his Remission Corner update was in the Spring eBulletin:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

Lynne.G/SD is also here still! Hmmm..trying to think of others you might recognize.

Joanne, do we have your remission testimonial on the main site?

Thanks again for coming back to join us!! I'm sure lots of folk will be fascinated to chat with you!

Peace, Maz

 

[JoanneM]

Hi again, Maz. Yes, I do remember Richie. My husband and I met some of the folks at the luncheon for Dr. T. in Hyannis. And around that time we had dinner with Henry, too, in Harwichport, I think it was, or at least right near there.

I had been tested for some of those exotic diseases associated with Lyme (babeosis, etc.) but did not come up positive. But, I had all the right factors for Lyme: doing AKC tracking in the Daniel Boone Homestead in grasses up to my head, herds of deer on our property almost daily (Pennsylvania at that time) neighbors with bullseye rashes, vacations on Cape Cod, the whole bit. The only problem is that I had it so long ago, no one knew a darn thing about it. Doctors told me nothing was wrong with me, and that I didn't test positive, so how could I have Lyme. That, with living in the country, deer, foxes, racoons around us all the time, a few German Shepherd dogs in our house. Oh I could tell stories.

Then I was diagnosed with scleroderma, oh joy. With a very very high ANA plus centromere. I had at least three doctors tell me I was going to die…they were all rheumatologists. All I could think of is, what ********! I had no intention to giving in and I just knew that someday I would find the answer and get better.

I have not written anything about my experience in a formal sense. Again, I have not been active in this group. But whenever I hear of anyone who has “symptoms” I immediately tell them to come to this website! It is a real help. There are lots of topics I would like to explore on here!

Right now I am having what I think is an RA type flare and I think I am ready to try the AP again, even if only for a little while.

I am eager to read what people on this board are saying about vaccines. I have my own take on that, too.

🙂

Since I joined the forum will I automatically get a newsletter?

Thanks again!

[richie]

Hi-

I remember that dinner up in Hyannis –seems a long time ago —Good to hear from you —

richie

[Maz]

[user=1662]JoanneM[/user] wrote:

Yes, I do remember Richie. My husband and I met some of the folks at the luncheon for Dr. T. in Hyannis. And around that time we had dinner with Henry, too, in Harwichport, I think it was, or at least right near there.

I have not written anything about my experience in a formal sense. Again, I have not been active in this group. But whenever I hear of anyone who has “symptoms” I immediately tell them to come to this website! It is a real help. There are lots of topics I would like to explore on here!

Right now I am having what I think is an RA type flare and I think I am ready to try the AP again, even if only for a little while

I am eager to read what people on this board are saying about vaccines. I have my own take on that, too.

Since I joined the forum will I automatically get a newsletter?

Hi Joanne,

I just saw a video of that event you're talking about! Alas, dear Henry Scammell passed away a couple years ago…he's sadly missed by all at RBF, past and present. Do hope Richie will see this and pop by to give you a wave.

Your story is incedible, Joanne, and thank goodness you found AP! You're absolutely right about the whole Lyme debacle, too. My Lyme doc reckons probbaly everyone here in CT has been infected at some point during their lives. Most people never realize and their immune systems fend it off quite successfully…but then there is a sub-set of folk, like you and me (and many others here) for whom it creates quite an immunological mess.

WOW! So you reached remission on AP for your sclero and came off AP and are now experiencing RA-like symptoms? Will you go back to Dr T to go back on it or would you like a MA listing of docs?

To subscribe to the RBF eBulletin, just go to the main Road Back home page (home tab is top right) and on the right side of the main page, about half way down, you'll find a little box to add your email and then submit it to be added to the newsletter  distribution list. This list is kept confidential and only used for the quarterly eBulletins. Here is the latest newsletter, just published yesterday, so you will have missed it. The next one should be coming out around Thanksgiving time:

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

Saw that you'd found the vaccine threads already…it's been a topic of discussion several times and more recently due to swine flu and concerns over vaccines for that.

So glad you've joined us, Joanne! Great to have your longterm experience and lovely self with us. We'd love to have your sclero remission story added to the website testimonials, if you wouldn't mind writing one up for us. You can send it to me or any of the volunteers and we will be sure to get it uploaded to the site.

Peace, Maz

PS Richie saw you! Richie, guess our posts crossed in the mail. 😉

 

[JoanneM]

Hi Maz and Richie!

Richie, glad to hear you are doing so well! I remember meeting you and you had just begun the AP protocol that year, if I remember correctly. What year was that luncheon for Dr. T? I guess I had been on the protocol for a while by then.

Sure, I could do a write up on my experience, Maz.

It would be hard for me to get up to MA to see Dr. T. as I live in Florida now and have a 90 year old parent I have to look after and a very old dog who needs care as well. Right now I am having “time out” up in NJ but will be back to Florida in a few weeks. Dog goes with me and it's even hard to load her into the car, though I have a ramp. She's unstable on her feet. I, who never missed an apointment, have missed at least three this year. They just blew by me! I can't seem to manange the extra care the dog needs, my parent's care, and all their medications, going to doctor and vet visits, etc. So, I am thinking I might be better off at this point to see a doctor in Florida. Do you have that list? Alternatively perhaps I could see a doc in NJ while I am here. (Only a couple of weeks more.)

My what-I-think-is-RA symptoms started a couple of months ago. I began doing the very lowest level Biggest Looser workout, VERY easy and should be able to be done by anyone. That started up a hip pain that became a more generalized aches/pains in my ligaments, made my walking stiff, hard to move, etc. Helping the dog to get up when she's having a bad day has challanged my arms and shoulders so they are screaming half the time. I have taken Aleve to no avail so stopped that and think I might need the AP again…after so many years!

I need to know the date of that Hyannis party. I think it was a rather long time ago, so I've been disease free for years.

[1Aggie]

Hi there, it is so encouraging to hear of those doing well years later.  I have not posted in quite a while because I have been doing so well and very grateful to not be consumed by this disease, just living life.  I have had a few flares lately but they are not as bad as in the beginning when I was first diagnosed (a year and a half ago) and they seem to be more spaced apart.  I am curious about the mention of stopping AP.  My MD in Lakeland FL states I will be taking this antibiotic the rest of my life more or less.  I am working towards remission with diet, AP therapy and chelation.  I am still wondering if food allergy testing would be a good chunk of the puzzle for me or if Lyme is a possibility.  But, I know AP has definitely been a blessing.  My question is do people really stop taking the antibiotics at some point? 

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[JoanneM]

I took the AP for around 3 years, and I have been off it for maybe 5, maybe more. I have to do some homework and figure out the dates…it's been a long,long time!

I never had the impression I would have to take the Mino for the rest of my life, but again, I have been “out of the loop” and just enjoying everyday life for quite some time, so I might not be up on the latest thinking.

A silly but very exciting thing happened a few short years ago. When I had the scleroderma my fingernails, which had always had “ridges” on them, became smooth with no ridges. A couple of years ago the ridges suddenly appeared! So exciting, as that is what is “normal” for my fingernails.

[Margaret Mueller]

Hi Maz,

Several years ago, on two separate occasions, my youngest son was bitten by a tick. He never had a bulls-eye rash, but lately has been complaining of joint pain — which could just be growing pains — he's shot up a foot in the last year. Since i've been keeping up on everyone's progress here, I'm wondering if I shouldn't get him tested for Lyme, etc.

Cheryl l suggested Ignex lab, but they've got a lot of choices.

What do you think?

[Maz]

[user=1323]Margaret Mueller[/user] wrote:

Several years ago, on two separate occasions, my youngest son was bitten by a tick. He never had a bulls-eye rash, but lately has been complaining of joint pain — which could just be growing pains — he's shot up a foot in the last year. Since i've been keeping up on everyone's progress here, I'm wondering if I shouldn't get him tested for Lyme, etc.

Cheryl l suggested Ignex lab, but they've got a lot of choices.

What do you think?

Hi Margaret,

Well, not all tick bites result in Lyme or another tickborne infection and sometimes the length a tick is attached is important to transmission, though there really is no agreement amongst the experts how long attachment needs to be in order to get Lyme and/or coinfections. I've heard estimates ranging from a couple hours to 36 hours!

That said, I wish I knew when I first got bitten what I know now about how horrific these tickborne infections can be and the havoc they can wreak on immune function. I was bitten first (to my knowledge) about 12 years ago. I never connected the dots, as we had just moved to CT and I was pretty ignorant about Lyme…something that happened to other folk and easily treated. Hmpff, what did I know? Since that time, I had a range of mild neurological and cardiac abnormalities…muscle fasiculations (twitching), migraines, palpitations, pin-pricking sensations exacerbated PMS, etc…not all at once and at odd times, so it was not until I became very ill from my second (known) run-in with tick bites 3 years ago that I learned that I may well have had Lyme for all those years and my immune system was just keeping things mostly in check. Multiple ticks bites over time, however, are known to increase the pathogen load and likelihood of more severe disease ultimately emerging…as it did with me. And, if it doesn't surface immediately, it's quite possible it will emerge many years later after an unrelated illness, shock, period of stress, etc. This is what makes chronic Lyme so very difficult to diagnose in many cases. Unless one sees the tick, has the classic EM rash, tests positive on standard tests, it leaves people in quite a quandary. That's because few people see the tick and only 50% of folk get a rash or test positive on standard tests. 

It might interest you to know that young boys are amongst the largest groups of folk who are now being documented as getting Lyme, simply because they're out of doors and getting into all kinds of brush, wooded areas, etc. And, California is a pretty endemic area to boot. :sick:

Really, just having a known tick bite warrants further investigation, I reckon, particularly if there are any suspicious signs and symptoms. His joint pains could well be growing pains, but I think you're wise to check into this further and just have him screened through IGeneX. Although no test is 100% accurate for Lyme, IGeneX tends to have more sensitive testing and most Lyme docs will consider even just one band or one indeterminate band as being evidence of exposure. Again, this is all part of the Lyme controversy, but essentially if one has had a known tick bite and is experiencing any of the odd array of symptoms attributed to Lyme (and these are many, as Lyme is known as the “second great imitator”), then this clinical picture would be enough for a Lyme doc to treat, even as a therapeutic probe to gauge response….because not to treat can be more devastating than treating.

The usual test that most people have run to start is the basic Western Blot IgG and IgM…I believe these are test #s 188 and 189. The lab holds on to the blood for about a month after receipt and results usually come back to the ordering doc within two weeks. If something needs re-checking or one then decides to have more in-depth coinfection testing done, etc, the same blood sample can be used. Coinfection testing is sometimes warranted if the WB comes back negative on all bands, though if you have an open doc helping, coinfection testing can also be done through a regular lab. I have heard of a couple instances where people were infected with babesia, but their WB came back negative. Really depends what the tick was carrying when they bit. Lyme is generally what is tested first, though, because statistics show that it's more probable for ticks to carry Lyme and Lyme docs will automatically treat for coinfections anyway, just to be sure all corners are covered.

If you decide to get testing done thru IGeneX, then you simply call them and ask them to mail you the testing kit. They include all the paperwork necessary, which you fill out, have the doc sign and then take to your local blood draw place. Best to get this done early in the week to avoid blood degrading in the mail over the weekend. Then you just mail the kit with blood sample, your check and paperwork off in the mailer provided in the kit by dropping it off at your local UPS.

Hope this helps, Margaret?

Peace, Maz

[Margaret Mueller]

Maz it helps a lot. I feel like such an over protective mother — although i'm really not, my boys have a lot of freedom, and I believe its better for them to have enough rope to make stupid mistakes before their eighteen so they can learn from them.

Brian never had a bull's eye rash on either bite, although one was on his scalp, and it could have been hard to seen. Brian has complained of feeling like he has asthma, twitching, feeling skittish, joint pain, nausea and he's got eczema on his feet. Since he was little, his eyes turn red every time he gets sick, that's when I know he's really sick — and he is the healthiest of the three; he rarely gets sick. That's why I pay attention when he tells me he doesn't feel good. HE doesn't have any of these all the time. I can reasonably see that all of these things don't necessarily have anything to do with lyme, and certainly could be related to normal things that happen to fourteen year old boys.

What harm can getting him checked do? None. It could end up just giving me peace of mind…or it could mean it gets treated and never has to suffer what other people have.

Thanks for all the insight. It'll probably take week to order, draw, get results. I'll let you know how it goes.

[Author]

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