Search Results for 'raynaulds'

[Ali]

Hi, just re-read the protocols and I’ve only done the pulse M,W,F 100mg morning and night over the padt 2 years…and previously back in 1997-2000.

It has been successful on this pulse therapy but since my lung diagnosis a week ago and recent inflammation of the lungs having to take Prednisone and Methotrexate again…I don’t want medical advice however I thought of taking 100mg daily or upinh the Minocycline to 250mg as suggested for long term diseases.

My Rheumatologist doesn’t know a lot about this therapy but has prescribed me what I need after talking to him back in 2016, so I just wonder as things have got worse or improved in my lungs, I am wondering whether it would be of benefit to change the dosages?

Any thoughts from others would be great as I haven’t had any hexhimar issues since starting Minocycline two years ago, or had any adverse reactions…only good results in skin, Raynaulds and fatigue!

Thanks in advance,
Alison

[Ali]

Cheryl F,
Thanks for the encouragement as I know what you mean regarding doctors and medications. Over these past 26 years I have had to push hard to get treatments that I believe are best for me!

The Rheumatologist that prescribed me the Minocycline is the one who diagnosed me in 1992. Initially I sort the AP out in 1997 from finding information online, then I found a Rheumatologist who prescribed this treatment in Sydney, Australia and he believed that it could help me.

After taking the Minocycline M,W,F 200mg and Clindamycin 1200mg every Tuesday, by 3 years my bloods were back to normal, ANA went from 1<2560 to 1<130, my erythrocyte sedimentation rate (ESR or sed rate) and C-reactive protein (CRP) were normal. No sign of the disease….but I stupidly went off the AP in 2000 and in 2006 things started to return, Raynaulds, Hypertension and lung issues by 2013. Couldn’t find an AP doctor so went on Methotrexate from 2013-2016 as mylungs were bad.

Finally after the PAH prognosis in July 2016 I thought I’m taking my life into my own hands, went to the Rheumatologist that first diagnosed me in 1992 and said to him “here are the results from when I last did this AP therapy, I’ve got nothing to lose but a lot to gain”, “I even said I would sign a waiver or he can use me as a study”. Well I convinced him enough as he was so impressed on how well I was after all these years and now more impressed that I’ve responded well to the as it is keeping most if the symptoms of Scleroderma at bay.

It would seem this secondary autoimmune issue ‘Sjogren’s Syndrome’ is affecting my lungs..gggrrr.

Well I’m prepared for the onslaught of side effects from Methotrexate but now I’m on the AP and LDN, I am hoping it will be a short term fix.

Alison

[cavalier]

John I have personally taken Tramadol only a few times as it was the only pain killer I could take without one wiping out the other. Some say other pain pills lowers the effectiveness of the LDN others say LDN lowers the effectiveness of the pain killers but it should not give a bad reaction just more ineffective. I took dilaudin spelling by IV when I had the small bowel obstruction – they knew about LDN they called the pharmacist on duty however later I was told it could make the small bowel constrict more as pain killers are not used when you have this I don’t know but I was able to take that too.
I had no issue taking my usual dose of LDN with Tramadol & I can take aspirin & I can take cyclobenzaprine as a muscle relaxer if my back is tight. I dunno if that helps but that is my personal experience & I do trust what Skip has to offer – I didn’t with Lyme & SD titrate up slowly but my doc who RXed it for me & me felt if I had a problem we could back down I got a lot of bang doing so & I was glad i was not waiting as I had really bad raynaulds at the time & man it helped that.

I am not into remission but it did lower that too a little by numbers anyways I do feel I would be & was worse off without it but please be careful in not going solely with LDN for your disease but it’s def. a must have for me not everyone feels that way but some people if they have a hard time adjusting sort of like AP people can stop sometimes too soon sometimes the body adjusts with a bit more time others may have had a issue but it’s a tolerable one in my opinion if they dream I’ve had some pretty bad nightmares without LDN so I felt OK – I dreamt more but I never had a bad one with LDN but to me the inflammation & other bad things I deal with awake are more of a worse nightmare if you get my meaning.

Jill

[cavalier]

Take a look at some of my posts in regard to LDN – for me I get more sick without LDN & I am more tired so I need this for sure as I have tried to go off once on purpose to see if it was really helping & another time I ran out for 4 days I don’t want to do that again.

I posted recently some info from expert doc’s one of which says it’s a old fallacy about having to take it at nite I get more help yet since I tried taking it in the daytime for fighting fatigue.
I never started off slowly but I have SD & Lyme & I have more internal involvement & it was progressing so I felt no time to take small steps all it did was give me increased help with very bad circulation at the time & it is what helped my raynaulds & still does immensely putting that a thing of the past with no flareups since I have been on LDN for the raynauds that is. Holding ground has been a issue for me & yes coinfections along with heavy metals have all been issues.
Jill

[Maz]

@mad1max wrote:

One thing I forgot to mention concerning my daughter’s condition. Prior to her RA diagnosis, she has presented with Raynaulds – especially during the winter when it is cold – her hands turn very red or blue and very cold. It is not so noticeable now that the weather in Tucson is 90 degrees. She had not been diagnosed with SD, I know that Raynaulds is a strong indicator of SD – so I am wondering if anyone out here has any Raynaulds without SD or any insight as to tests that can be done to positively determine SD. No doctor has brought the possibility of SD up, however from what I am reading on these posts most with SD have Raynaulds…Max

Hi Max,

I have just RA and also had secondary Raynaud’s in my first year after diagnosis, but this resolved over time with abx therapy. Raynaud’s can be primary or secondary, meaning it can exist alone as a syndrome of symptoms or exist as an overlap with other inflammatory rheumatic conditions. While it is usually the first presenting symptom of scleroderma, it can present with other rheumatic conditions.

Trying to remember, was your daughter ANA-positive? The ANA test is usually run first to screen for autoimmune diseases. If positive, further testing can be run, depending upon the pattern exhibited, to screen for positive labs for specific diseases. The following Lab Tests Online link explains better than I can do:

http://labtestsonline.org/understanding/analytes/ana/tab/test

So, essentially, if the ANA returns with a speckled, nucleolar or centromere pattern, then further testing can be run to determine what type of scleroderma presentation – localized or systemic and all the variations that may occur.

Strangely, some folks will test positive for SD, but have a negative ANA, much as can happen with RA. A person may have a positive RF, but be ANA negative. Docs, in general, however, don’t like to make a scleroderma diagnosis unless both labs and symptoms are definitive and will not treat until symptoms become a problem. This is because there is nothing in conventional medicine to treat this disease, except palliatively.

There is a bit more info on the main RBF site in Appendix B of the Historical Protocol about various labs that you can read here, including the anti-SCL-70 test for SD and the anti-centromere test for CREST:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638

For Mixed Connective Tissue Disease (MCTD) presentations where scleroderma may also present with lupus, RA, or other rheumatic diseases, they will also test RNP antibodies, which are present 95% of the time in MCTD. You’ll find screening lab sites online, like the following:

http://www.arupconsult.com/Topics/MCTD.html

In any case, Raynaud’s can be secondary to many rheumatic diseases and not exclusive to scleroderma, probably by virtue of the fact that systemic inflammation affects blood vessels, too.

Ultimately, according to Dr. Brown, all rheumatic diseases were treatable to varying degrees with AP, as he believed they all had an infectious component. 🙂 And, there are some home remedies to help manage Raynaud’s until AP kicks in…for e.g. systemic enzymes like serrapeptase (break down fibrin) and help to thin blood, Far infrared sauna, hot wax paraffin baths (as used in nail salons and can be purchased inexpensively from Walmart), warming mitts, electric heating pads/blankets, etc. In my case, I used a combination of these (still use my FIR sauna and systemic enzymes), but really only had minor Raynaud’s in a few fingers and toes occasionally.

[mad1max]

One thing I forgot to mention concerning my daughter’s condition. Prior to her RA diagnosis, she has presented with Raynaulds – especially during the winter when it is cold – her hands turn very red or blue and very cold. It is not so noticeable now that the weather in Tucson is 90 degrees. She had not been diagnosed with SD, I know that Raynaulds is a strong indicator of SD – so I am wondering if anyone out here has any Raynaulds without SD or any insight as to tests that can be done to positively determine SD. No doctor has brought the possibility of SD up, however from what I am reading on these posts most with SD have Raynaulds…Max

[mad1max]

One thing I forgot to mention concerning my daughter’s condition. Prior to her RA diagnosis, she has presented with Raynaulds – especially during the winter when it is cold – her hands turn very red or blue and very cold. It is not so noticeable now that the weather in Tucson is 90 degrees. She had not been diagnosed with SD, I know that Raynaulds is a strong indicator of SD – so I am wondering if anyone out here has any Raynaulds without SD or any insight as to tests that can be done to positively determine SD. No doctor has brought the possibility of SD up, however from what I am reading on these posts most with SD have Raynaulds…Max

[Maz]

@mad1max wrote:

My otherwise very healthy 14 year old daughter was diagnosed with JIA on 5 Feb 2012. She has an RA factor of 118, Anti-CCP of >500, and normal CRP and ESG tests. She also has Raynaulds in her hands. I have a doctor willing to prescribe AT, and because she had an immediate adverse reaction to mino, we have her on Doxy MWF 2X100 daily for the past 5 weeks now. She is also taking Celebrex because she had joint pain in her right hand and both feet. The celebrex helps with the pain, but does nothing to help with the inflamation in her right thumb and index finger which are pretty swollen consistantly.

I am not sure if the Doxy is helping, if she is slight herxing because of the doxy, or if the RA is progressing. I know that for AT to work, inflamation must be kept at a minimum. I hate at this point to introduce a biologic, or MTX, because she is still moving around pretty good – but I would hate to see the RA progress and do joint damage to her hand because of the inflamation.

Any ideas out there as to how long AT takes for JRA, how to keep the swelling under control, and if maybe I should add a second antibiotic like Zithromax?

At this point – I am basically directing her AT therapy, as I do not have an AT Doc here in Tucson Az – and following the Dr. Brown protocol from what I have read in the book and this great forum. Any help/suggestions would be greatly appreciated, and if anyone has a teenage son/daughter who presented with similar symptoms I would love to hear from you…thank you…Max

Hi Max,

A warm welcome to you and glad you found us. We’ve had a few parents of JIAers through here in the past year or so who may see your post and chime in with support.

Have you had a chance to read the Henry Scammell book, The New Arthritis Breakthrough and see the Dr. Brown video listed at the top of this forum? If so, it should help to get some understanding of the rationale for this treatment, which is a very slow therapy. In some cases, folks with early, mild, seronegative disease may be quick responders (within weeks to months), but in most cases, folks normally see some signs of improvement at around the 6 to 8 month mark or longer. Early herxing can go on for several months, too, while in others it may be transient and pass fairly quickly. It’s a very individual thing. Labs may also worsen initially during this time. If you take a look at my Progress Thread (link in sig line) you will see a chart in one of my posts that clearly shows how my labs worsened significantly in the first few months and then began to drop. I had monstrous herxing in the first 3 months due to high doses of abx needed to treat my Lyme-induced RA.

It’s quite important to know that AP will not stop the intermittent flaring that occurs with rheumatic disease, because it is not immune-suppressive. Over times, though, flares should be becoming less frequent, less intense and shorter in duration. Having regular labs drawn can help to decipher some of this.

If a person isn’t seeing any improvements (in labs and/or symptoms) after about the 6-8 month mark, then it is about that time when you might want to consider going back to the drawing board. There are articles on the main site that can help to sift through various things that may be preventing progress:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

Do you know what type of reaction your daughter had with minocycline? Was it a strong herx or a hypersensitivity reaction or some type?

There is a pretty good AP doc in Scottsdale, AZ, and one or two others in your state, if you’d like to have a list for further physician options? There is also an experienced AP doc in Iowa who trained under Dr. Brown (although semi-retired, many still travel to see him to begin AP with the 5-day IV clindamycin seriers) with whom your daughter’s prescribing doc can consult or with whom you can consult on her behalf. He is very kind to freely answer emails and phone calls.

My best lay guess, Max, is that if your daughter has a normal SED rate and CRP, this means she has a distinct lack of inflammation with her JIA and it is inflam that tends to cause the damage in RA. Have you had these labs drawn again since she began AP (antibiotic protocols)?

Unfortunately, we’re just patients here so can’t really offer advice on dosing or whether or not to use other rheumatologic drugs. This really has to be a personal decision made between patient and physician, but there are many folks here who have been on conventional drugs when starting out on AP who were later able to wean off them as their therapy began to kick in. I think the best fellow patient insight I can offer is to make sure to always read up on every drug before your daughter takes it in order to become familiarized with the up and down sides of each one. AP is relatively benign in comparison to other RA drugs, but in some cases, folks need to function (for school, work, looking after elderly relatives or children) and have no choice but to use another DMARD or a biologic while they wait till things are stabilized and can wean off the other drugs. which is generally the ultimate goal (of one adheres to infectious theory).

At 5 weeks, though, this is still very early days and it could be some months before your daughter notices any tangible improvement. The Dr. Brown video, while dated, is pretty interesting, because he shows bone scans of one of his RA patients over the course of 3 years and it clearly demonstrates the “slow” nature of the therapy to reverse the disease.

Is your daughter also on good quality daily probiotics, spaced at least 2 hours apart from her abx doses? So very important to maintain gut health while on long-term abx.

Hope something here helps and do hope other parents of JIAers will see your post to offer support. 🙂

[mad1max]

Hello,

My otherwise very healthy 14 year old daughter was diagnosed with JIA on 5 Feb 2012. She has an RA factor of 118, Anti-CCP of >500, and normal CRP and ESG tests. She also has Raynaulds in her hands. I have a doctor willing to prescribe AT, and because she had an immediate adverse reaction to mino, we have her on Doxy MWF 2X100 daily for the past 5 weeks now. She is also taking Celebrex because she had joint pain in her right hand and both feet. The celebrex helps with the pain, but does nothing to help with the inflamation in her right thumb and index finger which are pretty swollen consistantly.

I am not sure if the Doxy is helping, if she is slight herxing because of the doxy, or if the RA is progressing. I know that for AT to work, inflamation must be kept at a minimum. I hate at this point to introduce a biologic, or MTX, because she is still moving around pretty good – but I would hate to see the RA progress and do joint damage to her hand because of the inflamation.

Any ideas out there as to how long AT takes for JRA, how to keep the swelling under control, and if maybe I should add a second antibiotic like Zithromax?

At this point – I am basically directing her AT therapy, as I do not have an AT Doc here in Tucson Az – and following the Dr. Brown protocol from what I have read in the book and this great forum. Any help/suggestions would be greatly appreciated, and if anyone has a teenage son/daughter who presented with similar symptoms I would love to hear from you…thank you…Max

[Trudi]

@cavalier wrote:

I am concerned that the last 4 months of this happening is due to Candida I have the toenail fungus the GI upset the achey muscles etc etc

Hi Jill–

The following quotes are included in this article about borax:

http://www.health-science-spirit.com/borax.htm

Being such an excellent fungicide it is not surprising that borax is being successfully used to treat Candida. There is much interesting information on an Earth Clinic forum called Borax Cures (10). With low to medium-weight people use 1/8 teaspoon of borax powder and with heavier weight 1/4 teaspoon per litre of water. One drinks the water spaced out during the day, and does this for 4 or 5 days a week as long as required.

Another one about toe fungus: “He wet his feet and then took a handful (of borax) and rubbed it all over his feet. He said it stopped itching immediately! He was stunned. A few weeks later I asked him how his athletes foot was and he said: oh wow! it hasn’t come back! that stuff totally cured it !!!”

I took the borax water (1/16 tsp in a liter of water) for over a year. I had warts for over a year on the bottom of my foot which cleared up immediately after I started the borax. I also think it took care of my Raynaulds.

Good luck–
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?

[Trudi]

@laurawm wrote:

I have had wacky blood pressure ever since this all started

Me, too!

My CRP is very high..

My CRP was 134 when I first saw my LLMD. He took me off antibiotics because of the inflammation–fearing it would go higher. The last time it was checked, 5/2009, it was at 10.

Something that may have helped my Raynaulds is starting on borax–
https://www.roadback.org/forum/viewtopic.php?f=1&t=6029&p=54209
Stopped taking it in summer. Will probably resume it if I feel my “Lyme” symptoms coming back.

Good luck,
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?

[cavalier]

I take everything with a grain of salt Ritchie & I also believe in hedging my bets if I can wisely. I am not disregarding minocycline Ritchie but for some reason prior to getting my IV & since I am back on the minocycline I have not held but continue to progress quite fast so I am going to consider while I feel I can what I can do to help along with AP – without suppressing my immune this is not just in way of med’s I hardly take any med’s & dont want too but in any other things to include that shows any valid promise.
One study I came across was for minocycline & while the study had alot of withdrawals it was inconclusive in slowing the progression of SD – I dont say this to be OH my gosh b/c if you hang in there I also realize this study was only one year in duration & there will be on average not big reversals in that time so I dont necessarily think i think we just have to go by what our bodies are telling us. & in this study if the disease has been going on for a bit & there was no pulsing in with IV’s once to month to jump kick things … then yeah I can see if they took on some cases with SD that had been longer standing in duration like mine has been undiagnosed for a long time at least 7 probably closer to 9 yr’s that I am aware of.
I think mino has done me alot of good in stopping raynaulds & that in itself speaks to circulation is improved in the small vessels but the larger arteries have gotten worse during this time – I am thinking that maybe a longer haul ro slow & reverse. I am not willing to just watch things get considerably worse so IV’s yes & Cozaar for helping to block the TGF-b Dr Varga’s presentation for SD since i have need for a BP med. why not? Whey Cool Lactoferrin anything that can help to work on concert to modulate the immune not boost or suppress is on my radar – if it has enuf evidence & especially if it is GRAS why not? But since I have scarring appearing now in this last week fibrosis even with my ramping the game plan is still not on the upswing yet so I am looking to bide some time til that can happen. I think my Road back is needing some add’l army for now with AP being center. If someone is stable where they are at – then they are certainly may be able to be a bit more comfortable, as everyone has the right to make that choice, I am trying to make those the best i can with a issue that is a tight spot for me right now as it is interfering alot more than i want it too is the best way to say it. my mino may need just to be doubled up or it could be the brand or my being on Tetracycline as a teen for acne for 2 yr’s while mino is not the exact same maybe I have become somehow more resistance or just where I am at but I take a baby aspirin with the mino & I even have done that plus bromelain & quercetin to help enhance the mino it is not enuf right now as new issues have been coming forward now since I missed my IV the beginning of this month & they are still coming. At some point I hope it can be.
Best – Jill Systemic SD

[cavalier]

Nancy
& et all — sorry didn’t see this one so chiming in late as to some ?s you had.

I was on Minocycline BID EVERY day no days off at all for 4 months while this helped my raynaulds & did some skin softening a little – it was the IV’s that really jump started the core SD issues & the sarcoidosis. I regained mouth moisture & eye moisture my skin is able to sweat better – all from the IV’s & I started getting my phrenic nerve working with the start of the IV’s. It is felt by Dr S. that patients who have SD while mino daily is a important thing to try to slow the disease that the IV’s are a important part in making progress sooner is important due to the damage & risks to organs.

As to finding the critters in checking the mycoplasma test – I asked Dr S. this – the test is not measuring the level of disease but the antibodies he said there will be enuf evidence there for him to submit to insurance.

Walgreens with insurance coverage was EXACTLY the same cost as getting from Ida Grove Pharm without insurance go figure ! And Walgreens Infusion service were still not able to quote as of yet the nurse fees – my PCP said they will use the hospital here – but I dont know yet as to where that puts me for costs – have to call to insurance again on Monday to see if i can find out – I need to start the IV’s this coming Thurs – already one month has gone by – been working on this since i got back but companies & such just dont move very fast in getting answers. best – Jill

[alcock]

Hi There, I have Systemic Scleroderma for 9 yrs now, diffuse type…Im only on Pantaloc for heartburn….I have very severe raynaulds with finger ulcerations. Is this AP something that I should go on? Thank you:)

[nspiker]

@Trudi wrote:

Nancy, one of the parasites that came up on my electro-dermal screening is Leishmania. Weird! It showed up on my first screening in Dec ’08 (had my doctor scratching his head) and has showed up now and again since then, including this last time. It appears I may have contacted it in the Bahamas in the early 70’s. Coincidentally, that is also when I started having my Raynaulds symptoms (although they are very mild). I subscribe to the rule of thought that our bodies host all sorts of microorganisms which normally live harmoniously together. It is when the balance goes haywire that harmful organisms get the upper hand and make us ill.

Trudi,
I completely agree. There are so many bacteria that show up when I am EDS tested. When my doctor tested recently, she laughingly said, “You showed positive for African Sleeping Sickness” – I immediately pretended to fall asleep in the middle of the conversation 😆 !

Is your doctor going to treat for Leishmania and what is the treatment?

A Friend,
There is no doubt that most of us came to being sick after some kind of stressful event – I certainly did. I wonder what it was that caused my susceptibility to these nasty bacteria and pathogens. I can think back to when I was in college and traveled and could have picked something up in Africa or India.

I have tested my PH in the past, and will do so again. It’s amazing what this imbalance can trigger…

Immune cells that are too acid or too alkaline do not produce antibodies or cytokines (chemical messengers to regulate other immune cells), and they have impaired phagocytosis (the ability to engulf and destroy microbes). As a result, the affected individual becomes susceptible to viral, bacterial, fungal and other infectious microbes as well as cancer.

nancy