Checking in and Lupus

[hopefulmama]

Hi all 🙂

Haven’t posted much lately but still checking in frequently to see how everyone is doing. Hope this finds you well!

At my last visit with Dr. F at the end of December I found out a few important things… my ANA has increased from 1:40 speckled to 1:80 speckled, 1:80 homogeneous. My IgM RF was positive for the first time, and unfortunately my Anti-DNA antibodies were also rising. Nothing technically “abnormal” yet – just rising.

The good news was, that once again the full SD panel came out resoundingly negative. He did a really extensive SD panel this time at my request, even though he told me he does not think SD is part of what I’m dealing with.

After looking thru results more carefully, I guess I’m realizing that he’s following me for lupus. My complement C3 has been low 4 out of the last 6 times and Wikipedia tells me that is a marker for lupus. (Real lupus, not the Minocycline induced kind). This may explain why he put me on doxy rather than mino, as apparently for lupus patients doxycycline has a better profile and less chance of causing DILE. (Maz, is that accurate?)

I stopped taking doxycycline after that visit a month ago though, because my liver enzymes had skyrocketed – tripled, in just a month. I’ve been diagnosed with Gilbert’s Syndrome for a very long time and apparently that makes me uber-sensitive to medication and supplements, my liver just doesn’t process things normally. So with the jump in liver enzymes, I decided to give the doxy a break. My skin was looking terrible and I was extremely bloated.

Recently I read a book though that I’ll post more about in a different post. Pretty wonderful, I think – and I’m guessing many of you with Hashimoto’s may have read it too. Written by Datis Kharrazian, called “Why do I still have thyroid symptoms if my lab tests are normal?” The book deals with balancing the Th-1 and Th-2 pathways of the immune system by providing support to the pathway that is NOT dominant… e.g. if your Th-1 is dominant, you’d support the Th-2 to create balance. His book is based on really sound science and includes an extensive bibliography of research.

I love that Dr. K’s book completely embraces the antibiotic protocol and freely states that bacteria and viruses may underly many immune system diseases. He fully endorses taking care of chronic infections as part of the balancing protocol for the immune system. The guy’s so smart, and fully on board with what everyone on this board knows.

So, despite this new potential “lupus twist” on my path, I’m feeling so optimistic and excited to explore a new route. I’m going to get the bloodwork done to measure exactly what is happening in my immune system right now and once the labs reveal where my unique imbalances are, I can’t wait to begin supporting my immune system more intelligently. I’ll keep you posted and write more about Dr. K’s book soon.

I can’t think of a single one of my board friends who has lupus… just a few that had suffered from DILE… but if there is someone out there with lupus using AP I’d love to hear from you. So far unfortunately AP hasn’t quite worked for me, but maybe I’ve been hitting it too hard and heavy for what my body can handle. I haven’t given up though and I feel very hopeful.

Best wishes and do keep in touch 🙂

A

[BG]

Hi hopeful,

I’m glad you checked in, I’ve been wondering how things have been going for you.

I have SLE. I’m still officially diagnosed with UCTD because of a host of reasons including insurance coverage concerns (no longer an issue because I no longer have insurance) and because I’m showing signs of more than one connective tissue disease (overlap syndrome) but I don’t fit the diagnostic criteria of MCTD.

Antibiotics have helped me immensely but I’m still very sick and in a lot of pain all of the time.

March 2009, my GFR (glomular filtration rate) was 111.15. By February 2011, my GFR was 65.01. If my GFR continued to drop in the future as fast as it dropped from March 2009 to February 2011, I would have End Stage Renal Disease within two years. Since amoxicillin was prescribed for 10 days July 2011 for an unrelated condition (possible strep throat), my GFR has steadily increased. It was 74 Sept 14, 2011 and 86.56 Dec 23, 2011.

My lymphocytes dropped steadily during the same time period that my GFR dropped then started improving following the beginning of doxy treatment July 2010. My lymphocyte count is now just below normal whereas in June 2010 it was dangerously low.

I’m also at high risk for sudden cardiac arrest because of a heart rhythm disorder that results in profound bradycardia and heart attack-like incidents sporadically. Doxycycline put an end to life-threatening symptoms in 2010 and whenever the symptoms have reappeared since then, a double dose of doxy has put an end to them.

My ANA titer has been 1:320, speckled pattern, on at least two occasions. My ESR has been found as high as 54 but the CRP is always normal, a finding specifc for SLE. I have also had low gamma globulins and a NK cell deficiency.

Chronic, untreated infections can result in SLE and SLE can result in chronic infections so it’s a chicken and egg question to which antibiotic treatment is an answer — maybe not the only answer but an answer.

Hang in there.

Barb

[BG]

Also, you’re right about doxycycline. Lupies should never take minocycline but most can take doxycycline without any problems.

Barb

[Parisa]

Hi Hopefulmama,

You’ve hit a lot of roadblocks but you keep searching and pursuing and I know that eventually you are going to figure out this complicated puzzle of a disease you have. With the Lupus, I think you should definitely look into having some testing done to find out what drugs, supplements are a problem for you. Genova Diagnostics (formely Great Smokies Lab) has some. I think I found the right test although there could be more: http://www.gdx.net/product/10038

Thanks for listing the hypothyroid book. I’m going to check it out. I am currently seeing a very alternative minded family med doctor and I asked him if there wasn’t anything else I could do for my thyroid and he mentioned that he some of his patients have had good success with fulvic acid. I’ve just recently started taking it but haven’t been able to get up to a very high dose as the taste is rather bitter.

[Lynne G.SD]

Hi Little momma;
I,ve been wondering where and how you are.My sister has MCTD/Lupus/Lyme and sounded just like Barb.Because of the Lyme she was started on relatively high doses of antibiotics and just got worse.She moved over to the very low doseages of MP and within 2 years is doing much better than I am after 13 years of AP and Lyme protocol.
Did you read Phil’s post about vit.D? I pasted some info there re thyroid that should be of interest to you.
Lynne

[Maz]

@hopefulmama wrote:

After looking thru results more carefully, I guess I’m realizing that he’s following me for lupus. My complement C3 has been low 4 out of the last 6 times and Wikipedia tells me that is a marker for lupus. (Real lupus, not the Minocycline induced kind). This may explain why he put me on doxy rather than mino, as apparently for lupus patients doxycycline has a better profile and less chance of causing DILE. (Maz, is that accurate?)

Hiya Andrea,

This is just a quick one as I’m heading to bed soon and will be away for a day or two, but saw your question here and didn’t want to overlook it when I come back.

According to my old LLMD, who had a background in immunology and microbiology, DILE caused by minocycline is a “fake” form of lupus and is believed to be caused by a person’s unique way in which they metabolize certain drugs, called “poor aceytlation.” This basically means that people with poor aceytlation have an inability to break down some drugs in their livers as well as other people do. These drugs include certain thryoid and heart meds and even the TNF-blocking drugs. This condition is in no way related to real lupus and is distinguished by certain labs. That is, in real lupus, the double-stranded anti-DNA (ds anti-dna) will be positive. In the fake form of DILE, the single-stranded anti-DNA will be positive, along with anti-histone antibodies and (if previously negative) a positive homogenous ANA. Because DILE is unrelated to real lupus and is more to do with how a person metabolizes the drug, this doesn’t preclude real lupus patients from being on minocycline (unless they are also poor acetylators) and some of the top AP docs are prescribing minocycline to their lupus patients and having great success…e.g. recently-retired Dr. T. and also Dr. S. I know Dr. F. runs specific labs to watch for signs of DILE in his patients and so he can whip them off minocycline should it become an issue, pdq.

So, the bottom line is that, yes, minocycline is being used in lupus patients and, unless they are poor acetylators (which is unrelated to lupus), they should be absolutely fine on this abx. 🙂 Actually, one of our Remission Corner story contributors went into remission from lupus and DM on minocycline 100mg BID MWF, as prescribed by Dr. T., which you can read about here and in greater detail on the main site link at the bottom of her story:

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/267.html

All this said, lupies tend to be hypersensitive, so need to take a very low, slow and measured approach to practically everything they introduce into their diets and med regimen.

Hope this helps in some small way with your searches for answers, Andrea, as your health mystery further unfolds.

[BG]

Thanks Maz. I didn’t know any of that stuff. My physicians, and other lupies (who have been warned by their physicians), have always told me that all lupies must avoid minocycline at all costs. Some lupies are even told they can’t take any drugs in the tetracycline class, including doxycycline. I think physicians make this blanket statement to avoid problems because many lupies (including me) are allergic to sulfonamide antibiotics.

After reading your post, I found more info at http://labtestsonline.org/understanding/features/pharmacogenomics?start=1
and http://www.medscape.com/viewarticle/482766_4 and http://dermnetnz.org/reactions/drug-induced-lupus.html

Very confusing!

Barb

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