Great results from only 2 months on AP!

[carries]

Hi Lakes! Did you get your lyme test back yet? How have you been feeling?

[MMW]

Lakes, 

 I am so happy for your progress.   This is such an enlightening and hopeful post! 

  I noticed you take mino. twice a day @100mg. 
Did you not herx at all before the 5th week at this dose?  Didn't the herxing at week 5 make you want to reduce you dose?

Do you take your mino daily because it is standard procedure to do so for SD?

My dr has told me to take the dose like you currently are.    I hope I am doing the right thing, but after getting much info from everyone here,  I have decided to do it on MWF only.

With the great progress you made in such short time….it is tempting to up my dose.

MMW

 

[Lakes]

Hi Carries,  I just shipped my blood to Igenex yesterday, not sure how long it takes to get results. I'll keep you posted! 🙂

Hi Marg, what great news about your daughter! My sister has a bad case of RA and I'm trying to get her on AP also.

Hi MMW, I didn't have too much herxing – at about 4 weeks I started feeling pretty queezy, chills, exhaustion, joint pain flare up. Probably lasted 3 to 4 days. I didn't cut back on my minocin, the herxing wasn't more than I could handle – plus I was so thrilled with my improvement I didn't want to do anything to slow down my progress!

 I do take 200 mg daily and it really works for me, virtually no side effects now (just a little nausea the first few weeks). Taking it daily (Harvard Protocol) does seem to be the standard approach for Scleroderma. There are so many different AP methods, it seems that even the “famous” doctors vary in their approach even for the same disease.

[Parisa]

Lakes,

Igenex testing takes about three weeks……

[Lakes]

Thanks for the information! I'll let you know when I get the results.

To answer the herxing question – lately I've had a few achey nights with stiffness in the morning, and headaches. And the aches have been in new spots – back, legs and head rather than joints. I think the mycoplasma is losing the battle in my joints and is on the run. I've been lucky that the recent aches are still nothing like my joint pain used to be.

It does seem that every time I have a “not so great” period, I end up feeling even better than before afterward. I am definitely getting my energy back and starting to feel like my old self again. The brain fog is “intermittently” lifting also. After years of forgetting names and words and feeling slug-brained, I feel like my brain is starting to wake up again! 

Brain fog was one of the most frustrating aspects of this disease, and I'm very curious – has anyone else had that problem and seen improvement with antibiotics?  

One thing I forgot to mention before – to reduce inflammation and assist the minocin in reaching the mycoplasma I was taking a celebrex almost every night for the first 2 – 3 weeks. That may have helped in my success.

[Margaret Mueller]

I am on doryx. My brain function is much, much better than it was in July when I started. I was starting to lose my ability to spell, and I'm the family's oral dictionary. I haven't been able to think very clearly most of the time in the last four years. I have always been able to read volumes, synthesize it and write chapters. I was losing my ability to do that . I have managed complex projects in multiple jurisdictions, and I have been completely out of the game.

Since I started on abx, My ability to initiate, organize and complete projects has improved. I am not back to my old self, but I can tell, and my husband, family, and friends can tell, I'm getting back my brain. It's such a relief.

I used to work for the California Legislature, and have been a TV assignment editor, and managed employee and community relations for a Fortune-500 company. I write and teach for the last ten years for my church. It has been frightening.

[Lakes]

Hi Margaret!

I'm sorry to hear you've had such trouble with brain fog too! But I'm thrilled that you're getting your brain back – for your sake, and it gives me hope too! Before I was diagnosed with SD I knew something was wrong for years but all tests came back negative –  in addition to the joint pain and physical symptoms, my brain felt like mush. It was very frustrating at times, trying to run a business or even have an intelligent conversation – I'd lose my train of thought in the middle of a sentence and had terrible problems retrieving words and names of people I'd known for years. (I tried to cover it up but doubt if I always succeeded!) I seem to be getting my brain back slowly but it has been less than 3 months since I've started AP, so I have high hopes for much more improvement.

I've had frequent migraines for the last five years (sometimes several a week) that I thought were caused indirectly by the SD from lack of sleep/stress from pain, but I wonder now if those little mycoplasma buggers had infiltrated my brain. We know that mycoplasma can cross the blood-brain barrier.. hmm. At least we know that tetracyclines can also!!

Why did your doctor put you on doryx rather than minocycline, is it personal preference or just the latest and greatest?

[Margaret Mueller]

I suspect, and I meant to ask him last week, but I think that it is because I had whooping cough, and when I did, I had my first symptoms of scleroderma when I was recovering. Dr. F. said that scleroedema is an early stage of scleroderma, and that is what he said I have. My symptoms appeared very slowly, coming and going for about three years, then they took off. I try to encourage other people not to wait to get treatment. You just don't know when things will change. My brother came to visit in June, made a scene and left, and from that point on — my symptoms accelerated. Thank goodness my appointment was in July. My friends and family see the cool on the outside, and don't know how much I internalize when I'm upset.

[Lakes]

Margaret,

In all of my constant “digging”, one thing that kept popping up is that stress is one of the biggest exacerbators of SD. When my husband read that he became even sweeter and more  helpful around the house. Maybe someone could slip that info to your brother :-). I am a huge internalizer too, so stuff like that really gets to me (“scenes”).

 

[Author]

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