Advice needed

[Nonnie]

So, I have been a member of this board for several years. My blood work 3 years ago showed Anticentromere B and I had many symptoms of autoimmune illness, but dr’s were reluctant to diagnose me without skin changes. My doctor at Mayo seemed almost ready to diagnose, but insurance wouldn’t cover lung, heart, and esophaegal motility testing.

I decided to start minocycline, but stopped after 6 months (that was 2 years ago) when I realized I had Candida issues from before starting the antibiotics. I have tried fairly unsuccessfully for two years to get the Candida under control, but it always comes back. I felt so confused about all the different theories over Scleroderma and Lyme and never felt I knew which way to turn next. Changing my diet has helped a lot of things, but I have never been able to get rid of all the bad things.

Anyway, over the last six months I have been dealing with increased fatigue and lethargy. I believe my adrenals are weak–when I take too much Iodine, I lose muscle in upper thighs and glutes within days. It comes back when I stop the Iodine, so I believe it has to do with my adrenals.

A few weeks ago, I had a CT with contrast and it showed: minimal scarring in lungs, minimal thickening in an area of my heart, and an undetermined growth on my liver of about 1 centimeter. I am having a blood test for tumor markers, and a possible biopsy of the liver growth. Have any of you experienced similar?

I have no skin changes, so I am wondering if the internal changes will more likely get me a diagnoses. I intend to use AP, but I really need a diagnoses to get my family’s and my husband’s support. The last 3 years have been difficult because they think AP is not a proper treatment and they think I need to have an actual diagnoses.

My other big concern is starting Mino again while having Candida.

Any advice? I live in AZ, if that’s helpful.

[Maz]

@Nonnie wrote:

A few weeks ago, I had a CT with contrast and it showed: minimal scarring in lungs, minimal thickening in an area of my heart, and an undetermined growth on my liver of about 1 centimeter. I am having a blood test for tumor markers, and a possible biopsy of the liver growth. Have any of you experienced similar?

I have no skin changes, so I am wondering if the internal changes will more likely get me a diagnoses. I intend to use AP, but I really need a diagnoses to get my family’s and my husband’s support. The last 3 years have been difficult because they think AP is not a proper treatment and they think I need to have an actual diagnoses.

My other big concern is starting Mino again while having Candida.

Any advice? I live in AZ, if that’s helpful.

Hi Nonnie,

So sorry to hear about your recent health problems. It’s probably a good idea to figure out just what is going on with your liver before re-starting any treatment, conventional or AP. While it’s possible that early SD has created some organ scarring, you will want to tailor any treatments to findings in this regard. Some drugs are extremely harsh on the liver and so it’s just wise to know what you’re dealing with first.

Many experienced AP docs will treat candida with systemics and wash-thrus while the patient is on minocycline. So, it’s possible to be on both minocycline and diflucan or nystatin, for instance, at once. In fact, a good many docs will pulse in an anti-fungal as a part of their AP protocol, prophylactically. What have you been doing thus far to treat your candida apart from dietary measures to restrict sugars and heal your gut?

There are a few AP docs in AZ and one who is very supportive of Road Back Foundation, saying that Henry Scammell’s book changed the way he practiced medicine. If you need an AP doc list, then let us know. In the meantime, here is an interesting interview given by this doc and, in it, he discusses what he believes to be the cause of many rheumatic and neuro diseases. He also mentions candida, if memory serves. Just click on the link in the article to listen in…he starts talking a few mins in after the first guest:

http://www.betterhealthguy.com/joomla/blog/243-dr-stephen-fry-on-fl1953

Unfortunately, it seems that many doctors, even “the so-called best” ones, are reluctant to give a scleroderma diagnosis until there are quantifiable labs and undeniable clinical manifestations of disease. This is probably because they are fully aware of the effects of this disease and that they have no treatments, other than palliative ones, to manage and treat it, anyway. Telling a patient they have scleroderma before they can “bet their bottom dollar on it” could put a patient under tremendous early stress that can quicken the disease process, apart from anything else. The trouble is that late diagnosis can also delay starting AP early enough in the disease process to waylay progression. According to what Brown said in the book, his preference was always to start therapy as early as possible to prevent that freight train from picking up momentum.

Once you get some more definitive answers about your liver and, hopefully, the all-clear, you can re-start mino along with an anti-fungal and get back into treatment again. While candida can be a real nuisance, it can be managed while on treatment, and the scleroderma beast is a much bigger one in the grand scheme of things.

The following study, although old now (there may be more recent ones out there) shows how minocycline actually has some anti-candida effects in combo with an anti-fungal:

http://www.jstor.org/discover/10.2307/30081478?uid=3739576&uid=2129&uid=2&uid=70&uid=4&uid=3739256&sid=21101180856563

Please come back and let us know how you get on with your tests, Nonnie, and sending all good wishes for the best possible outcome!

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