Help – Return of SD

[jlane1111]

[user=16]richie[/user] wrote:

Hi-I take 200 mg daily of minocin for over 11 years now -this is after a complete remission after year 6 –Reason ?-over the course of these 11 years and being on this board and networking with folks who have SD –the rate of relapse for people stopping the minocin is frightening –far too many relapses –I dont intend to get off minocin or even reduce the dose —no problems for me being on it —Take enough probiotic and get liver and kidneys blood work yearly —the major problem with a relapse is it is extremely difficult to reverse the progression the second time around !!!!!!! I know personally of four cases where the outcome was the worst outcome !!!!–Makes absolutely no sense to me to “wean” or stop the minocin —
richie

Richie

My husband has diffuse scleroderma and is getting discouraged that after almost 7 mos on minocin (including 2 mos on weekly /z/)  he is not seeing major results. He has significant tightening on neck, Raynauds and generalized tightening on arms and legs and facial area. When did you begin to see results since you noted a remission after 6 years? We are going to begin IV Clindy's next month and have just purchased an infrared sauna.  

Thanks

Joanne 

  

[richie]

Hi-The very first indicator that improvements were going on was the lifting of fatigue after 6 months –skin improvement didnt really start until after a year or so –Raynauds is very stubborn –improvement only occured after starting adalat xr and then it took about another year or so —
richie

[McManus]

You know, this is pretty funny because, after going back and forth on the phone today with my rheum's nurse and asking her (more than once) to have him please call me to discuss IVs and/or other alternative AP treatment, he left me a voicemail, NOT on the phone I asked him to call me on I might add, saying “I really don't believe antibiotics to be helpful.”  Well my jaw nearly dropped 7 stories when I heard that because he'd been prescribing minocin for me the last six years as I asked him to do, all the while marveling at my flawless blood work, good BP and (except for fingers/hands) normal (tan) skin!! Now when trouble appears on the horizon he bails?? Even thought I told him when I stopped AP the symptoms promptly returned?? So plan B FIRED him and getting a second opinion from another rheum under my health plan, not knowing how he/she feels about AP, but lucky to get an appointment July 1. If B doesn't work I'll have to go straight to an AP doc and pay for IVs or whatever the recommendation is, like many of you have to do- well then so be it!  Thanks for letting me vent people I just don't get the doc's attitude- is he kidding me?? :angry:Watch that stress level. Hang in there everyone. You guys are great.

[vonni]

Richie,

I read your most informative posts and want to thank you for this valuable information.  I have NO intention of ever stopping the Mino completely, but was hoping to decrease at some future date.  I don't think I even want to chance that my aggressive systemic SD would ever return, as it was a living hell.  I started with 5 days of IV Clindamycin in 11/09 and then Mino 100 MG BID.  I have minimal residual, with my hands improving but more time is needed as the skin is not completely back to normal and I still have the Raynauds. I did find out I have chronic Lyme after being retested–this time at IGenex–and went to an LLMD last month, who increased the Mino to 300 MG daily (100 in the am and 200 in the pm).  He added Biaxin and a couple of supplements (Artemesia and Transfer Factor 6) in addition to Vitamin D which I take once weekly.  I'm also taking probiotics.  I don't know if treating the chronic Lyme will entirely eradicate the SD, as it's my impression from the information I have read that Lyme is what set the stage for SD.  What are your thoughts on this subject?  It seems as though we are in a vast sea of ignorance when it comes to any type of guidance from the established medical community.  I'm so thankful to have this site!!  

[Kim]

Hi vonni,

I can only speak from my experience, but Lyme treatment cleaned up my remaining SD symptoms.  I feel certain Lyme triggered my SD too, and you're right, sadly most doctors would be clueless at coming up with the correct diagnosis.

Take care…..kim

[vonni]

Kim,

Thank you for the information–what was the determining factor for your remission–labwork?  I am one of those individuals whose labs are negative although I have the disease.  Never even had any elevation of SED RATE, ANA, SCL-70, etc.  The mycoplasma testing that Dr. S ordered was also negative, which he said happens.  I am very happy for you being in remission.  My SD was so aggressive and severe in a relatively short time frame (6 months) that I don't want to chance ever going back to that life again.  I don't know how it would be determined that I am in remission other than clinincal presentation and sujective reporting.  The testing I had done by LabCorp was helpful, I understand they developed the testing for the CD-57 marker and mine was low,which is indicative of a comprimised immune system. 

I am so grateful for how well I am doing on AP and now the LYME treatment protocol.  At the same time, I am overwhelmed with sadness at the number of people on another site I visit online with SD who will never have the opportunity to try AP because of their ill-informed close-minded treating specialists. 

Vonni

 

[McManus]

Kim,

I have never been tested for Lyme – do you think I should be?  The summer before I was diagnosed w/SD I was spending time in Westchester County, New York where Lyme disease was quite common and in fact a friend of mine at the time was diagnosed w/Lyme.  Would it alter the AP treatment at all? Thanks.

[Kim]

[user=2198]vonni[/user] wrote:

Kim,

Thank you for the information–what was the determining factor for your remission–labwork?  I am one of those individuals whose labs are negative although I have the disease.  Never even had any elevation of SED RATE, ANA, SCL-70, etc.  The mycoplasma testing that Dr. S ordered was also negative, which he said happens.  I am very happy for you being in remission.  My SD was so aggressive and severe in a relatively short time frame (6 months) that I don't want to chance ever going back to that life again.  I don't know how it would be determined that I am in remission other than clinincal presentation and sujective reporting.  The testing I had done by LabCorp was helpful, I understand they developed the testing for the CD-57 marker and mine was low,which is indicative of a comprimised immune system. 

I am so grateful for how well I am doing on AP and now the LYME treatment protocol.  At the same time, I am overwhelmed with sadness at the number of people on another site I visit online with SD who will never have the opportunity to try AP because of their ill-informed close-minded treating specialists. 

Vonni

 

Hi Vonni,

My labs were pretty unremarkable too for the SD tests, initially testing positive for only one of the more insignificant markers.  Later, when I tested for Lyme, the tests were much more conclusive.  After treating Lyme, and all my SD symptoms improved almost entirely, my LLMD said there is no reason to re-test.  Some doctors are test-crazy, others are considerate of the expense and only run what they feel they must have. 😕

After feeling so good and tapering down on abx, I went for a year with no abx whatsoever which was a good time to let my immune system regroup and give my gut a break.  After that time I started to notice a slight return of SD symptoms which we think was a return of Babesia, so we're hitting that again and I'm doing very well.  I've seen how quickly SD can take hold and will never give it that chance again. :doh:  There is no question my immune system is working pretty well again now that it is having to deal with a lighter load of infections………whew!

I'm so happy you too are doing well.  It saddens me that so many people suffer and die from this dreadful disease without being given the option to go this route.  All you can do is give them the information and encourage them to decide for themselves.

Take care……kim

[Kim]

[user=418]McManus[/user] wrote:

Kim,

I have never been tested for Lyme – do you think I should be?  The summer before I was diagnosed w/SD I was spending time in Westchester County, New York where Lyme disease was quite common and in fact a friend of mine at the time was diagnosed w/Lyme.  Would it alter the AP treatment at all? Thanks.

Hi McManus,

I think you absolutely should be tested for Lyme, but only through Igenex Labs.  You may have noticed how many people on this board alone have the SD/Lyme combination and are learning that Lyme triggered their SD or RA or any rheumatic disease. You can order the Igenex test kit yourself, but you'll need a doctor (any doctor) to sign off on the forms prior to the blood draw.  The doctor that signs off will also be the one to receive the results, just be sure to get hard copies and don't rely on someone's interpretation of “pos” or “neg”.  A “negative” could actually be very “positive” if you hit on certain Lyme-specific bands.  Even with the more sensitive Igenex testing, Lyme is still mostly a clinical diagnosis, just nice if you have something concrete on paper.  One can be infected years, sometime many years, prior to getting sick.  Your immune system can be functioning along nicely the way it was intended and then be overloaded for whatever reason(s) and you get slammed with a whole host of problems.

Are you still in the New York area?  We can send you a list of Lyme docs (LLMDs).

If you're interested, you can read my story in my signature line of what all I've done to get better.  Without a doubt, treating Lyme is what made the difference.  It's important to know if Lyme is in the mix because the treatment is vastly different from the Antibiotic Protocol.  Lyme tx requires a rotation of many more abx and at much higher doses, and it absolutely requires an experienced Lyme doc (LLMD).

Take care……kim

[vonni]

Kim,

I am reluctant to ever completely discontinue minocycline given the aggressive form of SD that I have, and now lyme.  There are some posts on this site from people who have discontinued abx and then SD returns and the mino is ineffective.  I am in a good place right now, just the dry skin (itching) and some dizziness that has recently started with the addition of the meds for lyme.  I suspect it's from the Biaxin.  I contacted my LLMD and I'm waiting to hear from him, but I stopped taking it yesterday as it's considered a serious side effect.  Has anyone else had this problem with Biaxin (clarithromycin).  I was taking 500mg twice daily.   

[McManus]

Kim,

I'm in southern california now and have requested a list of LLMDs.  Thank you for all your good info.  Until I speak to a doc who's willing to work with me, I'm not sure how agressive I should be with the return of my SD symptoms.  At the moment, my energy is good, still practicing yoga, working full time, and haven't had a cold/flu in I don't know how long. As someone said, treatment all depends on the individual.

[Kim]

[user=418]McManus[/user] wrote:

Kim,

I'm in southern california now and have requested a list of LLMDs.  Thank you for all your good info.  Until I speak to a doc who's willing to work with me, I'm not sure how agressive I should be with the return of my SD symptoms.  At the moment, my energy is good, still practicing yoga, working full time, and haven't had a cold/flu in I don't know how long. As someone said, treatment all depends on the individual.

Sounds like your immune system is back on track. 😉  I'd be real curious to know if Lyme triggered your SD too, sure seems to be a pattern around here.

Take care…..kim

[Maz]

[user=2198]vonni[/user] wrote:

I am in a good place right now, just the dry skin (itching) and some dizziness that has recently started with the addition of the meds for lyme.  I suspect it's from the Biaxin.  I contacted my LLMD and I'm waiting to hear from him, but I stopped taking it yesterday as it's considered a serious side effect.  Has anyone else had this problem with Biaxin (clarithromycin).  I was taking 500mg twice daily.   

Hi Vonni,

I took the same dose of Biaxin for Lyme in my first year and didn't have any dizziness with it, tolerating it well. I suspect it is more likely the 300mg of minocycline you are taking, as mino is known for producing dizziness in the early months and with dosage increases.

The is one reason LLMDs generally prefer doxy or tetracycline, but you could ask your doc to lower your mino dose to standard Harvard Protocol (100mg BID), so you can remain on your mino, but add in the extra with doxy. Just a thought….

Peace, Maz

[vonni]

Maz,

Thanks for the info.  It's difficult to know if the mino is the cause of the dizziness.  I was on 200 of mino for 6 months with no dizziness.  The dizziness started  a couple weeks after the mino was increased to 300 mg and with the addition of 1000mg of Biaxin daily.  I looked at the symptoms and dizziness was listed as one of the more serious side effects of Biaxin.   I am waiting to hear from my LLMD on this, but have held the Biaxin since 6/28 in the evening and had one episode of dizziness on 6/29 in the morning but not so far today.  Just a little light headed.  I will let you know what I find out.

[Maz]

[user=2198]vonni[/user] wrote:

It's difficult to know if the mino is the cause of the dizziness.  I was on 200 of mino for 6 months with no dizziness.  The dizziness started  a couple weeks after the mino was increased to 300 mg and with the addition of 1000mg of Biaxin daily.  I looked at the symptoms and dizziness was listed as one of the more serious side effects of Biaxin.   I am waiting to hear from my LLMD on this, but have held the Biaxin since 6/28 in the evening and had one episode of dizziness on 6/29 in the morning but not so far today.  Just a little light headed.  I will let you know what I find out.

Yea, I see what you mean, Vonni…dropping the biaxin for a while may be the only way to tell if it's one or the other. If you do find it is the biaxin, perhaps your LLMD would substitute azithromycin for you? We all respond differently to these abx and while my experience was good with it, yours or someone else's may not be. I think some folk experience a metallic taste with biaxin, too, but I never got that either.

Hope you feel better soon, Vonni. The dizziness is a bit unnerving. Yes, please do check in and let us know what you discover.

Peace, Maz

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