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[1Aggie]

I live in the Tampa, FL area and was diagnosed with CREST syndrome recently (limited scleroderma) and just started taking minocycline about two weeks ago.  Decided to start on generic mino due to costs and the fact that my rheumy insisted she has not seen anyone with CREST convert to SS in her 25 years of practice.  (I would switch to Minocin if need be for my health but want to give this a try first) I have noticed I have felt a little worse with stiffness/pain in arms legs and feet the last few days but hope this is just the antibiotics beginning to work.  I know I have to hang in there for the long haul.  I have been getting dizzy with this medication.  Trying to take probiotics daily and I think I was feeling better on a Candida diet (dairy/wheat free as well as sugar free) that I recently gave up on because it is difficult to eat that way for a long time without loosing a too much weight.  Have any of you had the dizziness with minocycline and did it subside?  Also, do you find that watching diet closely is really important while on this regimine.  I am also taking a lot of supplements, Vit D included and hope this is OK. Thanks for any encouraging replies.

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.

[Cheryl F]

Aggie,

Welcome, I am glad you found this site, I believe the information and support that is available here from people who have gone or are going through what you are facing is very helpful.

The dizziness from the minocycline is not uncommon, it has been discussed a great deal on this board, if you use the search box and search for Mino Dizziness you will find alot of posts that tell of many people who have experienced this and it did subside.  Some people elected (with the support of their doctor of course) to cut down to a lower dose and build up as tolerated over a number of weeks.  The posts that you can find by using the search function tell of how these people did this. 

I personally am one of the people who experienced the Mino dizzys, I know it is not pleasant.  One suggestion people have had is to take the med near bedtime so you are not struggling with the dizziness during the day.

As far as the effectiveness of the generic minocycline.  There are also many discussions on this topic that you can find by using the search box (top of the page).  People have lots of opinions, but I can tell you, many people have gotten better using the generic. 

My daughter was diagnosed with CREST (AKA Limited Scleroderma) but she had a rapidly advancing case which after only six months of symptoms included lung involvement.  She is pretty much completely better now, with only very minor Raynauds remaining, and that is much improved.  Her PFTs have returned to completely normal from a low of 61% DLCO. 

Again, Welcome!

Cheryl Ferguson

[Maz]

Hi Aggie,

Just wanted to add a little welcome to Cheryl's! Lots of great people here who have a great deal of personal experience to share.

I also experienced some dizziness in the beginning on mino, but it fades with time…in my case, several weeks. You didn't mention your dose, but if you're starting out low and slow with your mino, Cheryl's suggestion to take it an hour or so before bed is a good idea and should help. Just be sure to take with a full glass of water, a couple hours after dinner and to sit up afterwards for at least another hour or so before bed, as it can cause some esophageal burning, which isn't pleasant. My doc said it can be servere enough to send you to the emergency room, if a cap doesn't quite go down or you have some reflux.  😉 

So glad you found the bulletin board and decided to join us!

Peace, Maz

[Parisa]

Hi, welcome to the Board.  Was the mino your idea or the doctor's?  I'm just so happy when people get treated right at the beginning versus wasting time with the other treatments.  Your doctor may not have had patients that progressed to full blown scleroderma but you don't want to be the one to prove her wrong!  Also, alot of people have cross over symptoms with the other autoimmune categories:  RA, mixed connective tissue disease, polymositis, dermatomyositis.  I'm glad you're on the right track.

[Goodwife]

Hi,

Welcome to the board, although sorry you have had to make your way here.  My hubby was dx w/SD Aug '06.  Although he was not dx'd w/CREST, but the SS, he has has the symptoms of CREST.  Be assured that after starting AP, a lot of people, including hubby, feel WORSE before better.  The achy stiffness you speak of happened to him, whereas before AP he didn't have any of that.  I can't speak from experience re: the mino vs. generic – we started off on name brande – luckily covered by ins, but still much more than generic – I was so scared of this disease and wanted AP to work so bad, I went straight for the name brand.  But a lot of people on the board use generic no problem.  Good luck and keep posting with your progress – you will get better, it just takes time, faith, and a LOT of patience!

 

[1Aggie]

Thank you so much for your kind replies.  I am very thankful to say I have a fairly mild case of CREST  (along with hypothyroidism and Raynauds) so far but it sure can make you feel bad on a bad day.  I am definitely having more good days than bad as of late. I first felt like a mack truck hit me in Dec of 07.  I just did not feel right and asked my primary to test me for Celiac and for autoimmune diseases with ANA due to wierd symptoms.  (Tingling/pain in feet, legs feel heavy, muscles hurt in arms/legs, getting out of breath going up stairs and fatigue).  The high ANA led me to many months of investigations and luckily I found this alternative.  I was determined to not go down the route of traditional medicine at this time.  I have had symptoms on/off for at least seventeen years but they only lasted for a few weeks at a time.  This time they have stayed for 9 months.   I can say that diet, prayer, acupuncture, chinese herbs, many supplements and some QiGong has kept me going and I have not had to take a day off of work yet (although I sure have had to drag myself out of bed at 5:00am to get into a tub to soak before I could move about).  I am thankful for this forum because it sure does give you some security knowing others understand and have already traveled down this road.  I am really talking myself out of feeling discouraged about feeling sicker the last week or so because it sounds like the mino may be working?  I certainly hope.  I am taking 100mg two times a day MWF.  My primary was willing to take me through the regimine, he is the best, but a new Rheumy I saw also is into alternatives and she said she had no problem trying this with me.  So, I am very blessed.  I am already trusting in the healing process going on and have to know that this illness is in my life for a purpose.  Hopefully I can help and encourage someone else down the road.  Thanks you all!!

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.

[1Aggie]

I read on the forum that you all take probiotics as well.  I am only taking one tab of adult refrigerated probiotics with a billion viable organisms (many kinds).  Should I be taking more than just the one tab?  I just went two months on a candida diet before embarking on this AP protocol and I am already feeling like there may be canida issues (headaches are back and I am burping like crazy).  I decided I will have to try to go back to Candida diet but that is such a boring diet with no fruit and I have to eat a jar of almond butter a week so I don't loose too much weight!  I also am taking Armour thyroid with mino and am glad to read some of the info re: this.  Sounds like I need to be separating these drugs (and supplements )apart from each other by 4 hours?  I take many supplements too.  Hoping none of them interfer.  I take Vitrin vitamin/antioxidant, calm magnisium and calcium powder, inositol powder, maca, DHEA, colostrum, nattokinease (for thicker blood), a baby aspirin, Glucosamine/Chrondrotin, St. John's Wort (I thought this was originally depression because all the MDs think you are nuts with these weird symptoms) also Vitamin D and L-arginine powder.  Are any of these contraindicated for CREST or with AP therapy?   Thanks for all the help and encouragement again!  Prayers to all of you.

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.

[Maz]

[user=781]1Aggie[/user] wrote:

I am really talking myself out of feeling discouraged about feeling sicker the last week or so because it sounds like the mino may be working?  I certainly hope.  I am taking 100mg two times a day MWF.  My primary was willing to take me through the regimine, he is the best, but a new Rheumy I saw also is into alternatives and she said she had no problem trying this with me. 

 

Aggie, it's great that you have such supportive docs who are on your side! I'm interested that you are pulse dosing, as many sclero patients seem to do daily dosing…the Harvard Protocol (100mg twice a day). I know that Kim has done pulsed dosing, though, and it worked very well for her, so hopefully this schedule will do the trick for you, too. 😀 

As for your other post and questions about probiotics, if you suspect candida, you might like to discuss this with your doc, too. Once candida takes hold, it can be a bit difficult to eradicate with probiotics alone. Probiotics seem to help us avert a problem, but sometimes it might be there before we go on AP and part of our overall picture. You can get candida testing, but some people just find an open doc willing to prescribe them a systemic anti-fungal (like diflucan) that they can pulse into their protocol. The systemics can be hard on the liver, though, so they generally need regular bloodwork. It wouldn't hurt to increase your probiotic intake for a while, too. I actually take 4 times the recommended daily amount on the bottle. I asked my doc about this and he didn't feel it would be harmful to take more than is recommended. I haven't had any adverse effects from this, but I would think you could gauge this from your stools and whether or not symptoms are alleviated.

Also sounds like you have a great mind-body-spirit approach to your treatment!

Peace, Maz

[1Aggie]

Thanks Maz for the input.  I do feel fortunate that I have been ok mentally with this.  What else can you do but try to look at the bright side right?  I have wonderful support around me.  I have done a lot of research on autoimmune disorders for my kids sake as well.  I have three kids and already my boys 15 and 12 have thyroid disease that is more than likely autoimmune because their antibodies came back high.  I have questioned whether I may have given them a mycoplasm in utero?  Is that crazy thinking.?  I have read that sclero pts take mino everyday and they also will have IV antibiotics at times.  I don't know if the Rheumotologist feels that I am not that involved (no lung, end organ involvement) and MWF would be the course or if she is really not informed about the difference between RA and scleroderma treatment.  Today I feel the worst that I have felt in a while (not as  bad as when I first started into this) so I really need to focus on this is what should happen and try and ignore it.  I can function and will.  I really would like to go on nystatin but I do not know how long or how that is dosed and I do remember being on Diflucan once and felt really dizzy on that.  Do you know what the dosing would be for an antifungal, have you done that?  Thanks for all your help!

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.

[Maz]

[user=781]1Aggie[/user] wrote:

I have questioned whether I may have given them a mycoplasm in utero?  Is that crazy thinking.?  

I have read that sclero pts take mino everyday and they also will have IV antibiotics at times.  I don't know if the Rheumotologist feels that I am not that involved (no lung, end organ involvement) and MWF would be the course or if she is really not informed about the difference between RA and scleroderma treatment.  Today I feel the worst that I have felt in a while (not as  bad as when I first started into this) so I really need to focus on this is what should happen and try and ignore it.  I can function and will.

  I really would like to go on nystatin but I do not know how long or how that is dosed and I do remember being on Diflucan once and felt really dizzy on that.  Do you know what the dosing would be for an antifungal, have you done that?  Thanks for all your help!

Hi Aggie,

I don't think you're crazy to think that at all. Prof Garth Nicholson (http://www.immed.org) believes this to be the case and it would certainly bear up under scrutiny in light of how patterns within families seem to evolve. My mother had Hashimotos/Graves (unable to confirm, but we also think her maternal aunt had RA) and my father had hyperthyroidism. My brother has multiple sclerosis and I have RA and some, as yet, undiagnosed thyroid problem (elevated thyroid peroxidase antibodies and hyperfunctioning nodules…possibly the precursor to Hashimotos). I came across some studies a while back that correlated mycoplasma with “autoimmune” thyroid disorders. Also, mycoplasma genitalium (I think it is, but someone may be able to correct me on the exact myco involved, as this is by faded memory alone) is present in a majority of women. The baby is protected in the womb, but as it passes out into the birth canal, it is very possible infection at birth could occur.

Mind you, right from birth we're exposed to innumerable pathogens, so there is no telling how we may come by them. Case studies have shown that Lyme, for instance, is being passed via maternal milk to infants and unbilical blood to the fetus, resulting in severe birth defects and even fetal or infant death….of which the larger medical community is still ignorant or refuses to acknowledge. I think the thing is, if our medical community is largely unaware of these possibilities, how can we lay mothers know any of this in advance? Few of us would have children and fewer still are able to foretell the future. As mothers, guilt goes with the territory, but the current reality is that none of us can blame ourselves…if our doctors aren't recognising infectious causes, how can we? At least until forced to become our own health advocates. As things stand, all we can really do is channel our energies into getting well again, armed with all the knowledge we can unearth.

Aggie, I'm not sure of the dosing for Nystatin, either, as I've never used it. As far as I know, it's a washthrough of the gut, rather than a systemic anti-candida medication. Any chance the dizziness you felt when on diflucan before was die-off rather than a reaction to the drug? Seems that a lot of people experience quite a bit of fuzzy headedness and fatigue when treating a candida problem, even if using a herbal, like olive leaf extract. I've personally used the generic verson of Diflucan, Fluconazole, but as a Lyme treatment (called the Shardt Protocol). I took quite high doses for a month (off all other antibiotics) and then did a pulsed regimen for a couple months after. I believe A Friend took Diflucan for 3 or 4 months, so she may be able to enlighten you further on dosings she used. Some people will just pulse in a diflucan once a week where candida is a recurring problem, as a preventative. I think it's probably something that needs to be addressed between patient and physician though, as regards dosing and individual requirements/tolerance, etc. Maybe the most challenging part is finding a physican who believes in systemic candida and is willing to prescribe. 

Peace, Maz

[A Friend]

[user=781]1Aggie[/user] wrote:

….I have been getting dizzy with this medication.  Trying to take probiotics daily and I think I was feeling better on a Candida diet (dairy/wheat free as well as sugar free) that I recently gave up on because it is difficult to eat that way for a long time without loosing a too much weight.  Have any of you had the dizziness with minocycline and did it subside?  Also, do you find that watching diet closely is really important while on this regimine.  I am also taking a lot of supplements, Vit D included and hope this is OK. Thanks for any encouraging replies.

Hello 1Aggie and Welcome,

For a number of years I've heard people new to AP write that they became dizzy after beginning AP.  I've also read an explanation that this can happen with the die-off that takes place, and this die-off is somewhat toxic to the bloodstream, and this also affects the brain.  This seems to be a normal reaction for many at first, but does not usually last very long. 

Also, it has been a normal thing that we feel worse before things start getting better overall.  You may find that some days you will have little windows of time when you realize, for the moment, you are feeling better — and this may vanish almost as soon as it came.  In my own case, it was about the 4th month after beginning AP that I just 'knew' I was getting better — including gradually getting the use back of my left arm and hand and could shampoo my hair, etc. 

You mentioned the anti-Candida diet.  This was something I had to stay on.  There is scientific data (sent to me back about 1994 by Dr. Wm Crook) showing that there is a wide variance of people's susceptibility to developing candida/yeast overgrowth.  There have been several on this board that have said they ate anything they wanted and did well.  Also, even two well known AP physicians tell their patients diet is not a problem.  I encourage you to do your own research and comparisons as regard your body.  (There is much information by respected doctors and scientists that say otherwise.  I didn't need either 'camp' to convince me; I'd learned about this during a long and scary time.) 

My present AP physician (very experienced) has her patients omit gluten and dairy from their diets when they begin, and believes these are problematic.  She says even patients who do not have Celiac Disease may well have “Celiac Syndrome” because of the way the gut responds and handles these foods, and can cause hypersensitivity reactions. 

Also, eventually if you feel you need brand Minocin, there are a number of us who order this from http://www.BuyLowDrugs.com and the cost from them is only a fraction of the cost elsewhere.  There is an 800# on the site that you can call for more information. 

Best of luck to you,

AF

[1Aggie]

Thanks kindly for your responses.  As said before, it feels good to communicate with others who have traveled down a road that I will be going down.  I keep trying to tell myself instead of why me? why NOT me?  All happens for a purpose in our lives I have to believe.  It is easier to deal with feeling awful when you know what is wrong too.  Scary when you don't know what is going on in your body. I hope my rheumy will prescribe antifungals if need be.  I think she believes candida needs to be found in blood tests to consider you infected though and I believe if this is the case, you are on your way out of this world.  Maz, I hope and pray you are feeling well.  We have a good friend of the family who has struggled with lyme disease for many years.  She is out in the LA area and has been seeing someone who identified many other infections in her that the tick gave her and they are tackling them now.  This MD who is working with her cured himself of Lyme and secondary infections so we are hoping/praying for her.  Guess we all have to try and be positive and focus on the little joys in life and encourage one another.  I am certainly thankful for you guys giving me help through these first few months.  Today at work I had brief thoughts of what if I can't work in the near future.  I have been the family's income provider for the last three years as my husband has been working to grow a self owned business.  This has been a source of stress along with other stessors that I think turned on this disease again.  Do you all feel stress plays a big part in how your body is handling the disease?  I read a good book called the Autoimmune Epidemic and it really focused on all the external contaminants our bodies are bombarded with on a daily basis.  (did not talk at all about AP therapy though). I am so careful what I expose myself too now and make sure my lotin, shampoo, makeup, hair dye is all made with non-toxic materials.  I even try not to spray hair spray, use the microwave, use plastics that may leach into food/drink etc and eat as purely as I can. Maybe I have gone overboard but those are things I CAN control and I do believe the diet I have been on as well as supplements (I also take Moducare- plant sterols and sterolins, is anyone else out there on Moducare?) have helped to keep me functioning.  Another question to the forum, should we with autoimmune disease stay away from Melatonin?  It says to on the bottle but I am not sure why.  When I am having a bad day or week, I sometimes have trouble sleeping and would like to use Melatonin or keeping asleep.  Well prayers to all of you and thanks again.

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.

[1Aggie]

Hi Goodwife, thanks for your reply as well.  Did you husband have the feeling like his legs.arms were lead  with muscle cramping/twitching ,  and pain that is almost neuropathic?  I have had this type of symtom before starting AP and have tried to figure out if this is a scleroderma symptom, hypothyroidism or what.  I feel as though it is impossible to walk any distances for any length of time.  My feet/legs will burn and feel like they are on fire, especially if I stand still.  It is really weird.  I also have the stiff arms in the AM and they will go to sleep all night long.  That seems better since wearing braces at night for carpal tunnel that neurologist recommended.  I did have neuropathy ruled out with nerve conduction studies.  I have had the hardest time describing these symptoms to doctors and they kind of look at me puzzled.   I will have days where it will go away for a few hours and I even feel like I can get back into exercising and then it may return with a vengence in the evening or a few days later boom, it is back full force.  I was on the road to this symptom subsiding but then went on the AP therapy and it is back.  From what I read, this is to be expected though. Anyway, just wondering if this is scleroderma symptoms that others have felt too.

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.

[Maz]

Aggie, thank you so much for your very kind thoughts, which I greatly appreciate. Yes, it really has been a tough old road since getting Lyme and then very severe, swift onset RA right on its heels…but, although it's been two years of a three step forward, two step back dance all the way, it has been worth every minute to begin to get my life back and know that AP has been the most gentle treatment I could have chosen. 😀

How great that your friend out in CA found a sympathetic doc and one that has beaten his own Lyme to boot! I often wonder what your average rheumy would take, medicine-wise, if they received such a diagnosis and knowing all the potential hazards of all the more toxic drugs. My Lyme doc went to medical school and planned on a career in microbiology research. When his father ended up with cardiac problems, his doctors recommending a heart transplant, he took matters into his own hands and started testing his Dad, finding he had undxed Lyme. After treating him, his Dad's heart function returned to normal and it convinced him that he needed to be out in practice helping others in the same boat. Thank God for these guys who truly believe in infectious causes and are willing to step out of the mainstream box…often at risk of scorn and to their own reputations.

I strongly believe stress is a big factor in our diseases. I was reading an article the other day (wish I could remember where, but these articles all meld into the other after a while and I only bookmark the keepers)….where the author commented that immunologists now pretty much agree that stress plays a pivotal role in immune function. I bet if we did a survey of everyone here at the BB, a good majority would be able to pinpoint a moment in time or a prolonged period of stress prior to acquiring their rheumatic disease. In my own case, it was a combination of acute infection (Lyme) and the shock of my Mom's very swift passing from breast cancer. No doubt in my mind that the HPA Axis (

http://en.wikipedia.org/wiki/Hypothalamic-pituitary-adrenal_axis) is closely related, resulting in the inability of the body to keep the pathogen load at bay.

I really love your spiritual approach, Aggie. While pain and suffering is not something for which any of us ever wishes, I share your feeling that everything in our experience is purposeful and meaningful. It may not be clear why, at the time, but usually unfolds on an 'as needed' basis. Just wanted you to know that your words were very inspirational and you just never know who might be reading them and finding some special message that they really needed to hear, myself included. So, thanks for sharing them. 🙂

Peace, Maz

[1Aggie]

Cheryl, I wondered if you wouldn't mind letting me know what dose your daughter took.  She was only on antibiotics?  Lots of SD patients say they don't pulse dose but take everyday. I have been taking minocycline on MWF 100mg 2X a day for about a month and a half now, not much different although I seem to have some herxing going on on some days.  Lots of headaches again too.  I had a higher cardiolipin test and Lupus anticoagulant (the lupus anticoagulant went back to normal recently but not the cardiolipin).  I am concerned this may mean impending organ involvement with me too.  I don't know if you know anything about these markers.  My rhuemy seemed to not be too worried about me getting any major  organ invovlement, just felt I may have to deal with annoying symptoms, but I seem to have some of the symptoms that SS patients have like the carpal tunnel, pain in muscles and feet that comes and goes.  Well, just wondering cause I have been looking into the MP as well and it seems to make some sense with the addition of Benicar for  getting your immune system to work normally in the future.  I am so glad your daughter is doing well.  I have concerns about my children (3) because already my boys have hypothyroidism (autoimmune) diagnosed at 12 and 11.  My daughter doesn't have any signs of autoimmune disease as of yet.  My sister had Lupus (descoid) but I think it was systemic and never diagnosed.  She was unfortunately treated for depression aggressively and the drugs she was on in my opinion led her to suicide.  We miss her daily but now that I am going through this, I just know all the symptoms she had was some kind of autoimmune disease.  So….. I am rambling on but I also read on the MP site that this therapy is safe for kids.  I have to wonder if I passed this on as a mycoplasm and not as a gene flaw.  Feeling better though than I have over the past eight months so I must take the bright side and feel very blessed I found this information and site.  Thanks!

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.

[Author]

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