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Hi everyone-
I’m brand new to this group, and very grateful to have stumbled upon roadback.org and Cheryl Ferguson! In July of 2012, I suddenly developed severe carpal tunnel, high blood pressure, swollen hands and feet and it appears….even menopause just like that. What a month. Up to this point, I ran 3-4 miles/day and never even had a GP as I never had any health issues of any kind.
By December, I developed Reynauds. After running out of ideas, my GP sent me to a rheumatologist. She diagnosed me with CREST scleroderma last month. A second rheumatologist confirmed it. I have to say, I’m thankful they diagnosed me so quickly, but I sincerely never imagined I would have a rare and incurable disease. However, their prognosis was not good and it was clear both planned to implement a ‘disease management’ plan for me. That just didn’t sit well with me, and I grieved about it for a while. After taking my first MTX dose and waking up hot and tingly….I experienced one day of less stiffness in my hands and legs. It felt great, but I was troubled by the black-box warnings. So, I researched it and that’s what brought me to roadback.org. What I read here made so much more sense to me and gave me hope. I read Scammel’s book in one sitting, talked to Cheryl Ferguson a lot (bless her heart) and located a doctor in MN who does the AP therapy. I will start on Monday the 18th.
I am so hopeful it kind of scares me…..if that makes sense…..I’m feeling almost too confident. He felt very strongly about starting me on oral MINOCIN rather than IV’s as he felt the IV was too hard on many of his patients. So, that is the route we are taking and I am hoping and praying for success. The sticker shock is another story…but one thing at a time.In my research I also read a book by The Skeptical Nutritionist. He talked at length about Brown’s AP therapy and his research led him to believe that patients should be taking Vitamin A & E along with it as they seem to be effective in softening the skin. I was just wondering if any of you out there had done the same?
My doc has suggested I start drinking Kefer (probiotic) and a multivitamin. Is there anything else you all would suggest?
Finally, has anyone purchased the brand name MINOCIN from Canada. He suggested I start looking for a way to buy it there as well.
Thanks in advance for any information, encouragement and help you can provide.@BonnieG wrote:
My doc has suggested I start drinking Kefer (probiotic) and a multivitamin. Is there anything else you all would suggest?
Finally, has anyone purchased the brand name MINOCIN from Canada. He suggested I start looking for a way to buy it there as well.
Thanks in advance for any information, encouragement and help you can provide.Hi Bonnie,
Just wanted to send you a warm welcome to the forum! Glad you found RBF and hope you will visit often. There are many SD patients here – some in remission on AP, some just starting out, like you, and some well on their way.
Unfortunately, Stiefel brand Minocin, the Canadian version is no longer available through Canadian pharmacies. It was the equivalent to the US brand Minocin, in pelleted format, but Stiefel was sold and the new company stopped producing its “dermatological” lines. Minocin, here in the US, is now being sold through Onset Dermatologics:
Some folks have managed to get their insurance companies to approve brand Minocin by having their doctors make an appeal on the basis that SD patients often suffer from acid reflux. The pelleted variety (as opposed to the powdered or tablet form generics) tends to dissolve lower in the gut and so there is less likelihood of esophageal burning (can occur if a tetracycline is not fully swallowed or due to refluxed medication). Once approved, there should be no difficulty getting it thereafter, but it can be a process. Otherwise, the preferred generics around here seem to be Teva or Watson, though there are others that individuals find work just as well, too. I think others should chime in with what they are using and you can also use the search box at the top of the forum to check out past discussions on this topic.
There are so many things one can do to support the treatment, including diet (eliminating gluten, sugars, dairy and eating fresh foods – those with swallowing difficulties might find juicing works for them), learning how to detoxify the body, learning which supps are helpful, etc.
Some commonly-used supps are oral probiotics, ALA (alpha lipoic acid), NAC (n-acetylcysteine), krill oil and systemic enzymes (e.g. serrapeptase, nattokinase, lumbrokinase…taken on an empty stomach). There are others, but these are very good for inflammation, breaking down fibrotic tissue, for anti-oxidative therapy and boosting glutathione.
Many SDers also find that investing in a FIR (far infrared sauna) can really help with Raynaud’s and circulation, as well as ridding the body of unwanted toxins. The skin and gut are so important in releasing toxins, but when skin is affected and gut motility slows, toxins get backed up in the body. Sweating and deep heat helps in this process and also to help relieve joint and soft tissue pain.
Just a few things to consider for research and to get started…but as time goes on and you hang around here, you’ll pick up lots of great pointers from other posters. Cheryl is wonderful, isn’t she?!!! 😀
Welcome! 🙂
Hi & welcome. I can so relate to how things all seemed to happen at once health wise. When I 1st got outward symptoms of SD I had sudden change in my BP going up I was always normal before that & I also had Raynauds appear for the 1st time this was in 2005 & I saw a # of doc’s who all missed that I had Systemic diffuse SD. I finally pieced it all together after trying several times in 2011 I was untreated all of this time and insisted despite doc arguements I didn’t have SD to get tested the doc was wrong & I have had many lab tests confirm this since then & doc’s. I too saw quickly how little most doc’s had to offer for this disease & how at best the med’s would only help if they did with symptoms but nothing to slow down the disease. I felt there had to be something else & in my search found the Scammel book & the Road Back. It’s not been all smooth sailing as I have alot of damage & progression but I am working on this as best I can as I have some internal organ involvement & I also have Lyme disease that was also untreated confirmed in testing so I am working on both. No one I think wants to be special and we can find ourselves here when we never imagined having SD. I was 51 am now 58 yr’s old. It’s a complex disease in my opinion as to what triggers can contribute but none the less AP the right therapy & doses are helpful in fighting the inflammatory process that is going on.
I have some family in St Paul & I had heard there maybe more doc’s up there open to AP so that is good you have a doc there & you are closer to Iowa if you ever feel you have the need for IV’s but many can get there without IV’s over the long haul others really can benefit from that extra push – it sort of depends on the person & if there has been alot of progression for me i could really use that & it was very helpful the one time I got to go to Ia. I am in Tn., so that is not easily done for me.
Diet can be helpful following what is a antiinflammatory diet – while some doc’s dont see the need or recognize this others feel it is a part of the adjunct support. It may take time though as diet can take up to 18 months to help change or contribute, but I dont feel diet is enuf by itself, once someone has this disease in my opinion.
Some people like immune modulators to also give support, again each of us is going to be a bit different in how far our disease has progressed. Always good to get on the path with AP sooner than later but there can be still reversal & changes accomplished by people who have had SD.
You can do a search of past topics on here you will find alot of good useful info & topics to discuss with your doc.
Jill SD, Lyme & CPnThank you both so much for your warm welcome, history and advice. I sincerely appreciate it. Since it is becoming quite clear that a good detox protocol is necessary……has anyone ever used Digesticure? The thinking behind it seems logical and apparently many have cured serious digestive problems. My rheumatologist saw no harm in it as it is an alo Vera based product. Would love to hear some feedback. Thanks!
Hi Bonnie interesting that you should mention Digestiqure – I read the Code of Life this DC doc has put together a couple of days ago. It makes some sense & follows some of the followings of other doc’s who suggest more organic veggies & fruits, which is also largely part of a anti inflammatory diet which can quell or at least stop adding fuel to the fire in part. Many of the principles listed are largely part of what many doc’s advocate.
There is a product called Ambrotose made my Mannatech that some nurses have mentioned as being helpful in Rheumatic diseases. I have used this product in the past, but not for long periods of time it’s expensive. Many vets swear by it for various cancers & cancer is a inflammatory disease so it makes some sense it can help to quell the inflammation which is part of the SD disease. I made reference to it on here in the past. It too is made from Aloe & some links are under Glycoproteins or Glyconutrients. Swanson’s online sells a glyconutrient but you would have to take alot of capsules or open them into a tea to get what the Digestiqure has for their mg’s in a scoop.
I have a call into them Digestiqure as again I am for good overall body support but I am very leery of a single product as a stand alone that doesn’t have a number of people who have testimony as we do here for AP. Meaning i would not be willing to ditch the AP for Digestiqure as SD is a serious progressive deadly disease & I have seen enuf serious progression to know it’s not something to take lightly or use one product for a period of time to see as the disease can easily march on. Meaning I am willing to possibly use something like this as I have found the Swanson’s to give me some energy & it is of this same principle I use 10 caps of this a day in my Cistus Tea which is a good biofilm breaker according to Dr K. a LLMD in Wa. & I can attest it does whiten the teeth & make the mouth cleaner after only 2 cups of this tea so far. What that will do for SD I dunno, but I do know I have biofilms due to my Lyme, so I am using the Cistus tea.
In my situation I have to use a multi prong approach.I am all for detox again what can help my body be stronger & help my immune at least battle this I don’t feel detox alone without anything else is the answer to stopping the SD, but it’s a important part of getting there in fighting this battle. The Digestaqure cost also is not inexpensive I have no idea if they have a money back guarantee kinda doubt they do, but Aloe is a good medicine & certainly one cant drink enough of it to get the amounts they need to get good repair from.
Aloe I have found mentioned along with other supp’s for being helpful, but I don’t see where there is solid data as to clinicial studies or ancedotal testimonies. So I keep that in mind when I look at things like this – if there is some benefit great but I dont hang my hat totally on it being a cure. But if in combination just like I value my cod liver oil to being of help in giving me the O3’s I need which are very helpful to quelling the inflammation & keeping me here, but i know it takes also AP in addition to keep my progression slowed down.
I hope this makes sense.I am interested in trying the Guna Inc. anticytokine therapy which my doc recommended this Italian doctor who invented these look at my history to make a protocol for me to help me with my SD along with AP.
I have more than one aspect as to why I have this disease both from a genetic standpoint a suspectibility with alot of risk due to autoimmune like or Rheumatic disease risk in my family and from coinfections such as Lyme & CPn along with age & low thyroid that was subclinical for years & then progressed that was untreated. The more you know the better you can battle as you know what you are dealing with.But yes I will listen to what the product specialist has to say about the Digestiqure – but i also have to consider costs & whether it’s potential or should i wait & do the Guna first so i can guage what is doing what for me. I am for Immune support but what can be a miracle for one person may not be so fabulous for someone else. Like LDN some tout it cured them of their Rheumatic disease I personally dont find it to be a cure for SD but that is for me – I do find though it has helped me a bit with my immune system and initially it did help my circulation & helped my raynauds quite a bit so yes I got some mileage from that, but I am glad I didn’t give up the AP for LDN or I would have been in trouble.
Jill SD, Lyme & CPn
The reason why I would consider the Digestiqure is over 80% of the immune system lies in the GI this is true of us & for animals so to help the immune be stronger you need a good GI – my own GI has been hard hit over this past fall landing me in the hosp. twice for small bowel obstructions – obviously Aloe is good for the GI based on so many reports & I have used Aloe alot in the past in powder form to help my GI. If my stomach is hard hit it is felt that scar tissue either from Lyme or from more likely progression of the SD has advanced – this caused us my doc & I to make changes in my AP protocol & again another change which the last change seems to have helped me the best and I am seeing progress finally, but it’s been alot of layering including some herbs. It is felt that some of us even who dont have symptoms direct from the GI have some impairment there or bacteria.
But whether it’s Digestiqure or another powdered aloe, like your doc says Aloe is a good overall concept I am open to what can help the GI and in turn the immune system but i also know I need a potent antiinflammatory AP as well as a antiinflammatory diet, which has alot of fresh alive foods in it for overall health & to get more nutrients from.Jill SD, Lyme & CPn
Thank you for your thoughtful and informative replies. When you hear back from the digesticure folks I would like to know what you think. I’m a newbie and don’t even know the questions to ask. I am definitely going to start the AP. I have no intention of letting my SD remain untreated but I am wondering if the digesticure might be something to take at the same time…..to rid my body of dead bacteria and help stabilize my GI while the antibiotic works. If it works as claimed that woud make sense to me.
Hi Bonnie – just want to add another welcome to the ones you have already received and, as always, sorry you had to seek us out 🙁
As you may have already started to see, there is an enormous well of support and collective wisdom to be had from the folks here and I hope you visit often to take advantage of this. Seems that you have already read up and started to be very proactive in your treatment choices and road back to greater wellbeing. That will serve you very well.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)Hi BonnieG… Welcome!
I totally know how you feel… I felt the same way about 7 months ago. Although I’ve had ups and downs, I can honestly say I don’t regret my decision one bit. Best of luck to you on the 18th and welcome!
Michelle
@cavalier wrote:
my own GI has been hard hit over this past fall landing me in the hosp. twice for small bowel obstructions
Jill, just wondering if you have ever seen the following study? I’m wondering if it might be relevant in terms of your GI issues:
Dear Maz – Interesting the info on Flagyl! I was on Flagyl, & then went off of this when this stomach deal 1st started for me the dosage was 500 mg’s BID for a total of 1,000 mg’s a day. However, I had just gotten off the Flagyl for a bit, when this happened. I do know that Flagyl is a cyst buster & is a potent GI med. used for almost any stomach malady & quite successfully in canines too.
Dr S. & I feel this was a excerabation of the SD for me. We trialed upping my zith as it was felt my GI absorption was not optimal from 250 mg’s to 500 mg’s, this helped some, however adding in Mino I got more relief from the mino this is when my esphogeal difficulty swallowing went away which also remanifested during this time so I know my SD was not being well controlled.
I have been trialing just the mino 100 mg’s twice daily M,W & F, but I sure would like to get the clindy IV going for me – but as of Friday this has not happened yet the Pharmacist at InfuServe Anthony still has not gotten a call back from Dr C.I still have some stomach trouble nothing like i did though, but still it’s not totally normal yet. I do have some Flagyl here on hand. I have to check to see if Flagyl can be taken with Mino.
TX you are a gem!
Jill SD, Lyme & CPn
Bonnie – I have not as of yet heard back from the product specialist reps at Digestiqure.
Am sharing this info with you & for anyone else below, it is pertaining to Lyme & while I know you have SD & not Lyme that we know of, it is still pertinent the why is one of my doc’s Dr C. in La. who had me start on peptide shots for my SD, but it was not the right one for me – he stressed that I do either IV chelation if I could get a doc to do the IV’s or Detoxamin suppositories to get rid of heavy metals & excess calcium that I could not get good progress unless I did, from the Scleroderma.
He strongly felt until I did I would or could have a harder time getting good progress, if I didn’t do so whether it was AP or any other program, til I got rid of those. I believe he was correct on this, but I had to get the metal out of my mouth 1st which I did & now I am doing this every other day doing the Detoxamin we will test how well this did for me at the end of a 6 wk period.
I ordered this online & I am also doing Glutathione as well, in form of neublizer & also suppository.
These points maybe of some help to you to discuss with your doc –“In 5,000-6,000 patients tested, everyone is “loaded” with heavy metals such as mercury and lead( key word everyone not almost or some but all!)
Most “sickness behavior” (i.e. what makes us feel sick; symptoms) is the cytokines. Glutathione reduces this in minutes in many patients
40% of patients have adrenal dysfunction which must be addressed; patients will not respond to antibiotic treatment without adrenal support ( I do & I know of others on here who do as well, most of us did a ZRT salivia test)Low Dose Naltrexone (LDN) can be very helpful in lowering cytokines and thus relieving many symptoms associated with the disease. Always remember the cytokines. LDN can be a big help here (I take LDN nightly while it is not a cure all for me, it maybe helping to slow in some ways)
Bicillin is one of the best antibiotic options at 1.2 million units 2-4 times per week (this is for Lyme)
Autoimmunity is likely driven by intracellular bugs such as Mycoplasma (My note from reading it is known that Clindy is very good at intracellular! Which is why so many get a good response to Clindy IV’s)
For environmental toxins, far infrared sauna can be a good option
Up to 25% of patients with MCIDS (Multiple Chronic Infectious Disease Syndrome) improve on a metal detoxification program. This may also be related to autoimmunity (SD is in this group of Autoimmunity or Rheumatic)
Detoxamin or oral DMSA may be used for heavy metal detoxification
Xymogen MedCaps DPO (dual-phase optimizer) can be a useful detoxification support option
Glutathione can be used for quinolinic acid or Cytokines.
(Cytokines are what causes the inflammatory process)
On the Cowden Protocol: Glutathione works better than Burbur or Parsley in his experience and he did not find the protocol to have a strong enough effect on Babesia. Otherwise though, Dr. Horowitz reports very positive results with the Cowden Protocol
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification” -from – http://www.betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeawaysOften what helps one disease in slowing down progression the same good principles can be of help to another inflammatory disease.
Jill SD, Lyme & Cpn
Posting this link in regard to the importance of Glutathione & what it’s place in the body is. It’s importance to the immune system & for helping build white blood cell counts to fight off infections etc. Also some evidence of this helping to soften skin is said by those who use this & I am finding this to be the case as well.
Oral forms of this does not work well due to going thru the stomach.
A great adjunct to AP, as it helps it do it’s job better by helping the immune system.http://lwpatchpartners.com/glutathione.html?gclid=CNPbutravbUCFQapnQodh1YAnw
I’m not affilalated with this product.Jill SD, Lyme & CPn
Couple more links on glutathione – the 1st basically says how being low can increase the pro-inflammatory state.
http://www.jbc.org/content/286/41/35407 –
Journal of Biological Chemistrywww.jbc.org
First Published on August 18, 2011, doi: 10.1074/jbc.M110.205708 October 14, 2011 The Journal of Biological Chemistry, 286, 35407-35417.
Glutathione Peroxidase-1 Deficiency Augments Proinflammatory Cytokine-induced Redox Signaling and Human Endothelial Cell Activationhttp://www.jci.org/articles/view/57817 How Glutathione can help defend against bacterial infection
As we age we have less of this in our body.
Jill SD, Lyme & CPnOne more good overview of Glutathione how to help raise it in the cells & it’s actions in the body – to me it’s very synergistic with AP in getting our immune back to better functioning. For someone who is fighting a high inflammatory state this info shows it to be helpful.
http://capitaldistrictvitalitycenter.com/blog/2012/03/fight-inflammation-with-glutathione-recycling/Why I like boosting the Glutathione levels is, I can readily find credible doctor written articles that show merit to doing so.
The Aloe idea of Digestiqure, while it maybe safe to do so I can’t find other doc’s who know or tout this product’s benefits. If their claims hold to be true it could have some great benefits, but there is a lack of outside data to support this. It maybe just not well known yet. This company has not as of yet called me back to discuss their product it maybe such a small company that they dont have many product reps?
Jill SD, Lyme & CPn
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