[hopefulmama]

Di,

That is so sweet of you. We don’t have any pets (three small children = about as much as we can handle) but I really appreciate your consideration. The article makes a lot of sense, and I hope it will help others in the future!

Warmly,
A

[hopefulmama]

I just want to thank you all so much.

Krys is right that sometimes when things seem very dark, everything looks scarier than it is. I don’t have a lot of support at home for the medical challenges I’ve had – mainly because my husband believes that if you focus on a health problem you give it more power. He’s a lot healthier than I am, so maybe he’s onto something. Anyway our dynamic is complex when it comes to health issues, even with our kids (when they are sick).

That’s why it means so much to me to have the genuine kindness and support of this group of caring and genuine people – all of you understand just how mentally exhausting it can be to experience chronic illness and fatigue – but look in many cases mostly normal so that it’s harder for folks on the outside to feel compassion.

The MRSA will be ok. It will, because I won’t rest until I find answers – and I’ve been researching tirelessly since even before I knew for sure it was MRSA. I just had a feeling it was. Anyway, I had already tried poultices, garlic, turmeric and manuka honey(and Keflex!) before going to urgent care and it just kept getting worse and worse. I’m not sure why, but the cellulitis was spreading rapidly. So, for me, doxycycline has once again been a lifesaver. Things are improving steadily I think.

Since posting last, I’ve received two pieces of information that help shed light on my situation. First, and very luckily, I received the lab report from the hospital which shows that although I have MRSA it is only resistant to Penicillin G and oxacillin. There were seven other antibiotics that it was susceptible to – not just the tetracyclines but also clindamycin and many others. It was very relieving to see that even if for some reason the doxy does not pull through for me, there are many options. So my kind of MRSA is not nearly as bad as they can be.

Next, my pharmacist shared with me that she has had 3 other cases of MRSA in our neighborhood within the past two months. So clearly it is out there right now… in my community. I may have been carrying this same staph for years… or I may have picked it up from one of my kids or their school, or even the grocery cart at the local store. Wherever it came from, it may actually have been a recent acquisition during the two months I was off of doxycycline and especially during that washout week when I went off EVERYTHING that keeps me going.

The pharmacist agrees with all of us that the doxy couldn’t have paved the way for this MRSA because if it had, it would not be susceptible but rather resistant. So that is good news.

To be honest, I’m not sure if anyone ever cultured my impetigo over the years to find out what kind of staph I carried. I’ll try to find my old records, but I don’t think they ever gave me penicillin for it. I actually think the first time I got it back in 1997 they gave me Keflex but then when I got it again in 2005 the doctor told me that Keflex no longer worked and I think she gave me either a sulfa drug or doxycycline. Either of which would cover MRSA. So, Phil may be right that I could have had it for a while and maybe it never caused big problems for me before.

I’ve been taking garlic baths with epsom salt which seem to really help. Contacted the local MRSA specializing naturopath in our area today that A Friend suggested, so maybe he’ll be able to help. Will see my LLMD Dr. Y next week so will ask her opinion as well. There are many way to skin a cat and something is going to work. I’m sticking around this joint! 😀

Thank you again so much for everything. I am reinvigorated and hopeful – and who knows, life is funny. I’m back on the doxycycline now at 100mg BID daily and perhaps there is an important reason for that, beyond the MRSA. Sometimes we need a little shove in the right direction; maybe the MRSA was mine.

Warmest wishes. I hope you are all thriving and healing with every passing day… and I hope I can be there for you too, if ever you need a friend or a support.

A

[hopefulmama]

Kate,

First, huge congratulations on your progress! The fact that you feel better AND your labs are improving is so encouraging! Really wonderful.

Complement C3 from my research relates to kidney function. It can predict future kidney disease, and is often used as a marker for lupus nephritis. My C3 has been low 3? out of the last 6 times, but it does seem to fluctuate. I read on another post that as long as your metabolic panel comes back normal the rheumatologists will not send you to a nephrologist or recommend ACE inhibitors. It’s just something they watch to determine disease progression.

SD is known for kidney involvement, especially early, and AP can take a little while to really kick in. So my best recommendation to you as a fellow patient would be to get some of those little urine test strips where you can check yourself to make sure you aren’t spilling protein (which would indicate progressive kidney problems) and also maybe keep track of your blood pressure. But as long as the metabolic panel looks consistently good, I don’t think it is something to worry too much about at this point.

If your kidneys do end up needing some help, thankfully ACE inhibitors seem to have resolved much of that problem and for SD folks it is probably more crucial to work on keeping up the lung health with N-AC and azithromycin. If you enter those terms into the search box on this forum you will find a lot of discussion on the benefit of N-AC and zith for pulmonary fibrosis (and to prevent it).

Take care and I hope any of this has helped you!

Warmly,
A

[hopefulmama]

This is great information, thank you for sharing it. Dr. K’s book (that I had mentioned in a different post) speaks a great deal about the importance of glutathione and today I purchased a supplement from Apex Energetics called Glutathione Recycler based on the recommendation of the new doctor (Dr. C) I met with. (Another one recommended was Nitric Balance.)

For those who are able, another good product is called Oxicell. I can’t personally do glutathione supplements and creams (I’ve tried both, I get asthma reactions) but I am excited to try the recycler… and at least I can do the oral precursor to glutathione (N-AC).

I think these docs/researchers are definitely on the right track. It’s exciting, and I’m optimistic.

😀 A

[hopefulmama]

Cell-Based Immunotherapy with Suppressor CD8+ T Cells in Rheumatoid Arthritis
http://www.jimmunol.org/content/174/11/7292.full.pdf

Ok so you will need to get your degree in immunology to wade through this study. But it’s all here. Apparently RA also manifests with an increased CD4/CD8 ratio (CD4 being greater than CD8, a “higher” than normal result).

They’ve been working for a while with CD8 T-cells to see if increasing those to balance out the CD4 T-cells would put RA into remission. According to this study, it does… at least in vitro.

Here’s another one:
CD4+,CD28- T cells in rheumatoid arthritis patients combine features of the innate and adaptive immune systems.
http://www.ncbi.nlm.nih.gov/pubmed/11212151
“Patients with RA have an expanded and unusual subset of CD4 T cells that infiltrates the tissue lesions and is characterized by a deficiency of CD28, the expression of CD8-alphaalpha homodimers, and the expression of several types of HLA class I-recognizing NK receptors.”

I don’t know the risks of immunotherapies. I do know though, that the 44 studies they based this paper on lend a lot of credibility to Dr. K’s protocol and his work balancing the immune system by supporting the weak immune pathway to create a balance.

Either way, patients who want to know whether their current protocols are working can use the CD4/CD8 ratio to establish a baseline and then provide concrete answers. This is what the conventional doctors look at to see if their immunosuppresants are doing the job… so we AP folk might as well be able to use it too. Would save a lot of time and heartache, I think. There is a clear normal range for CD4/CD8 cells. If your protocol is working, you will return into that range… or at least head in that direction.

To sum up (from what I understand so far):

Hashimoto’s and hypothyroid – Low CD4/CD8 (below .9)
SLE – Low CD4/CD8 ratio (below .9)
HIV – Low CD4/CD8 ratio (below .9)

RA – High CD4/CD8 ratio (Dr. K quotes 2 and above as being worrisome… normal range is 1 to 3.7)
SD – High CD4/CD8 ratio (Dr. K quotes 2 and above as being worrisome… normal range is 1 to 3.7)
ALS – High CD4/CD8 ratio (Dr. K quotes 2 and above as being worrisome… normal range is 1 to 3.7)
Alzheimer’s – Seems to start with a normal ratio and then progress over time to a CD4+ (high) ratio in severe stages

The interesting thing to me is that many patients with autoimmune disease seem to suffer from Hashimoto’s for years before developing a myriad of often-overlapping autoimmune problems. Lots of folks have Hashimoto’s and then Scleroderma, or Hashi’s and then RA. So my question is, does their CD4 shift from negative to positive? Do these patients swing like a pendulum to the other side?

I don’t yet understand how the CD4 number can change drastically over time… since it is considered by doctors and researchers to be quite stable… or if there are different subsets of Hashimoto’s patients, some of whom have a low CD4 and some have a high CD4. This will be one of my questions to Dr. C. I wonder if there are patients out there with say, both lupus and scleroderma. I know there are plenty with MCTD.

I’ve learned from reading on HIV forums over the last few days that you can increase your CD4 numbers through diet and supplements. I’m sure you can decrease them with other foods and other supplements.

Ok, that’s all for now… 12:20am here and so tired! Take care.

[hopefulmama]

Wow, I am overwhelmed by and so grateful for your kind comments and encouragement. This board is the exact opposite of a dark and sad space. I always leave reading each dialogue thread feeling basically uplifted and hopeful, not to mention warmed by the generosity of spirit shown here. Thank you so much! Krys, Winston, Parisa, Lynnie, Lori and Mary – your enthusiasm and support went a long way toward making my day today.

As an update for those who are following my new path, I embarked on a “washout” period on Monday… I guess it will be 3 days soon. For newbies, a washout is when you stop all of the medicines or supplements you’ve been taking a while before doing a big blood test so that you can get the most accurate results possible. My TH-1, TH-2 kit was shipped out on Monday from Georgia and when I looked at my calendar for February I realized that I didn’t really want to be going through the dregs of washout later in the month, e.g. around Valentine’s day, etc. The company rep I spoke with for the lab recommended at least a week off of anything that wasn’t vital (they aren’t going to tell you to discontinue any lifesaving meds!) and the guy said:

“The head doctor here always says you should have this panel done when you are feeling at your worst.”

Well… after three days, I can check that box off. Suffice to say, it makes my head spin to see how fast I deteriorate when not taking any of my normal protocol except probiotics. That stuff has been holding me together since I got off the doxycycline. These 3 days have been long and hard. I keep reminding myself that this is the last time I will ever need to do this… just need to establish a credible baseline so I can see if future protocols are working. I’m planning to stay off of everything until Monday and get the serum panel run and shipped off that morning.

Tomorrow I will see Dr. C (a disciple of Dr. K) for the first time and go over my labwork with him. I am hopeful that he will be able to help me begin to find my footing on this new path I am traveling. I’ll keep you all posted.

Winston, I have taken LDN since around October of 2010. My LLMD had it formulated as a cream for me at a compounding pharmacy and I use it nightly in the dosage of .75 to 1.5 depending on how I am feeling. I haven’t noticed it helping much, nor have I noticed it causing problems. Sometimes it keeps me awake a bit. I’m not sure whether it supports TH-1, TH-2 or if it modulates both immune pathways. That will be a good question for Dr. C tomorrow.

Take care everyone. I’ll touch base when I have more concrete info to share!

Thank you again for being such true friends… it means a lot, especially at times when I feel this icky. (Always darkest before the dawn, eh?) 😀

A

[hopefulmama]

Thank so much for all of your support!

I wanted to chime in with the next installment of this new adventure I’m taking.

Got my results back from CD4/CD8 ratio labs today. Very informative!

In a nutshell, if I’d had this test done two years ago I would never have worried that my autoimmunity was trending toward SD.

My CD4/CD8 ratio is lower than “normal”… .8 with a reference range of .86 to 5.00

A low ratio is often seen in HIV+ patients or those fighting viruses/infections… also in Hashimoto’s and SLE. Doctors often use the CD4/CD8 ratio to determine whether a therapeutic protocol is working… they set your baseline and then they check you periodically to see if your ratio is rising or lowering. In SLE if the CD4/CD8 ratio rises they consider the therapy to be effective.

Scleroderma patients are known for for having an *increased* CD4/CD8 ratio… it is well documented in the scientific literature. Their CD8 cells experience apoptosis (death) and the CD4 cells dominate:

Increased transendothelial migration of scleroderma lymphocytes
(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1754998/)
“CD4+ T lymphocytes play an important part in the pathogenesis of scleroderma (systemic sclerosis, SSc) and predominate in perivascular SSc skin lesions. Both soluble and membrane bound adhesion molecules are overexpressed in SSc.”

Increased Frequency and Compromised Function of T Regulatory Cells in Systemic Sclerosis (SSc) Is Related to a Diminished CD69 and TGF? Expression (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695559/)
“The frequency of CD4+CD25+ and CD25highFoxP3highCD127neg T cells was highly increased in all SSc subgroups… CD4+ T cells are increased in the circulation of SSc patients [20], [21], whereas NKT cells and ?/? T cells are decreased.”

Increased frequency of T regulatory cells in Systemic Sclerosis displaying a markedly altered phenotype and compromised regulatory capacity (http://www.hopkins-arthritis.org/physician-corner/education/acr2008/scleroderma.html)
“In line with previous observations, all 36 SSc patients had higher frequencies of CD4 + cells and CD4/CD8 ratios compared with healthy controls. In contrast with that observed in RA and SLE, further analysis revealed that all SSc patients had significantly higher numbers of CD4+CD25+ cells when compared with that observed in healthy controls.”

* * *

I haven’t done the rest of the cytokine panel yet so don’t know yet which of my immune pathways are elevated/dominating… but if I ever needed 100% confirmation that my body is not actually experiencing SD… this is it. Even after 2 years, I do not have elevated CD4 T lymphocytes.

However, I do have a raging case of Hashimoto’s and apparent trending toward lupus…

Here is one study relating Hashimoto’s to a low CD4/CD8 ratio:

Peripheral blood T-lymphocyte subsets in autoimmune thyroid disease.
(http://www.ncbi.nlm.nih.gov/pubmed/1342892)
“A decrease in the CD4/CD8 ratio in Hashimoto’s thyroiditis hypothyroid patients was observed, in contrast to an increase in the ratio in autoimmune hyperthyroid patients.”

* * *

I wish someone had run this blood test for me two years ago. In all of the hundreds of blood tests run for me by various doctors, nobody ever checked for this. It would have saved me countless sleepless nights.

For those on the board who *do* have SD, having this test done periodically will let you assess how your protocol is going… if your ratio lowers into a normal range, you will know that the protocol you are on is effective. If it remains high, you will know to try something new or different.

Hope this helps someone!

Warmly,
A

[hopefulmama]

Krys,

I ordered the kit online through True Health Labs (and I believe the blood is drawn by Labcorp).
http://www.truehealthlabs.com/th1-th2-balance-balance-test/

As an aside, I noticed that Dr. B.H. (who is the guy behind the lab) keeps a blog and the most recent article relates to Lyme disease, with one on gluten intolerance right before: http://doctorbrady.wordpress.com/

I don’t know enough about the lab yet to recommend it, and I can tell you that Dr. B.H. is a chiropractor and not an MD. He also works with Dr. K in some kind of network, so I can’t guarantee that there isn’t some kind of conflict of interest. Still, I felt confident enough to proceed. I’ll let you know what I find out!

Warmly,
A

[hopefulmama]

A50505,

Thank you so much for posting your wife’s story. I’m sending you both best wishes for her complete, lifelong remission so that you can have a very long time together seeing the world and enjoying each other.

As a person on the other side of this same kind of equation, I think I probably speak for most wives with autoimmune challenges when I say that your wife is incredibly lucky to have your support, involvement and compassion. My own husband is such a good man and a great father but it has been hard for him to understand (because I look fairly normal on the outside) how challenging my day-to-day has been at points. The autoimmune journey can be a lonely one.

Thank you for sharing your journey with the rest of us so that we can celebrate the news of your wife’s steady recovery. I wish you both all the best (and wonderful health)!

A

[hopefulmama]

I have not been diagnosed with CREST or SD but do have esophageal dysmotility and suffer from GERD – lately worse than ever. I too wondered if it was a sign of disease worsening but conclude that doxy is hard on the esophagus and when combined with my diet, I’m not doing the GERD any favors.

I wanted to let you know about an amazing book I’ve found that has been just incredible for my reflux and GERD problems. Since I’ve begun this new diet my issues with reflux and heartburn are about 90% better or more.

It’s called “Dropping Acid: The Reflux Diet Cookbook and Cure” by Jamie K, MD and Jordan S, MD. Ironically I just noticed this morning that my esophageal specialist from UC Davis Med Center wrote one of the testimonials on the back cover… too bad he didn’t mention it to me when I visited their center in 2010!

Anyway, there is a lot of new science involved with it – different reasoning for why to avoid certain foods. It has to do with pepsin and the way in which it can be activated not just by acid coming up from the gut but also by acidic foods being eaten or drunk. There is a lot of hard science behind the book (which is also a cookbook) and it is highly recommended by MDs on the cutting edge of the ENT and GI fields.

I have resolved that after the holidays are over I am going to get a lot stricter with my diet for I have found that when I follow this book my reflux vanishes. It’s hard to follow right now at Christmas but in a few weeks, I’m going to give it my all. Hope this helps you some.

Take care –
A

[hopefulmama]

Such wonderful and inspiring news!!! Really thrilled to hear how well you are doing. Best wishes and may it only get better from here!

Warmly,
A

[hopefulmama]

Really far away from where you are located – but there is an esophageal specialist I saw at UC Davis Medical Center in Sacramento who is doing some work with electro-stim for motility. If interested contact me in a private message and I’ll send you his name and contact info.

Closer to home though, if you search through all of my first posts (about 400 posts ago!) somewhere in there is a study that was done on acupuncture and it’s ability to improve motility. You could probably find a good/reputable acupuncturist very close to where your mom is living. I did try this in the beginning of my journey and there was a definitely noticeable improvement. You just want to explain to your acupuncturist what points they used to stimulate in that particular study, and then he/she will be able to help.

TENS machine is probably less expensive than acupuncture though.

Good luck!

Azithromycin and Erythromycin are also known to increase motility.

A

[hopefulmama]

Redrock,

It’s a thrill to hear your good news. So happy the pulmonary hypertension is reduced!!!!!!!

I don’t know the answer to your question but I can tell you that my AP rheumatologist Dr. F prescribes 100 billion a day from a medical probiotic product called FloraMax and it is supposed to be taken at least 4 hours away from the antibiotic and preferably on an empty stomach.

My LLMD had me taking between 100 and 200 billion a day of a probiotic that contained many different strains of the good bacteria.

So, maybe the PB8 just isn’t enough?

I think the probiotics cost more than anything else in my protocol but the way I look at it, they’re probably the most important thing after the antibiotic.

Take care!

A

[hopefulmama]

Karthik,

I am so sorry that I don’t know the answers to your excellent questions. I am just a fellow patient, sharing information about what has worked for me. N-AC can be purchased at most health food stores and online here in the USA. I do not know if there is a way to get Azithromycin naturally, I think probably not as it is an antibiotic. There are probably others on this board who could answer your questions about Cellcept better than I could. I don’t know anything about it.

I wish you the very best. Is there any way that your mother could travel to receive treatment?

Warmest wishes.

[hopefulmama]

I am so sorry to hear of your mother’s situation. If you search through this board for the terms “pulmonary fibrosis”, “azithromycin” and “N-AC or N-acetyl cysteine” you may find posts by many members that will give you ideas about what you may be able to do for your mother. Speaking only as a fellow patient and not a doctor (not capable of giving you ‘real’ medical advice, just saying what I’ve read can work for these things…) I would also definitely try to get her on an SSRI (read through the recent studies I posted about the link between serotonin and scleroderma) because they have shown that serotonin is the link between vascular disease and fibrosis, and that fibrosis can be both prevented and ameliorated (reversed) through the use of SSRIs. It can’t hurt, and it might help. I have known of several people on this board to reverse their lung disease and would recommend that you look into posts by the following people:

Parisa (her husband)
Annie from Hawaii
Eva Holloway

A combination of azithromycin and N-acetyl cysteine has shown to be particularly helpful, at least for several folks on the board. As a fellow patient, I can tell you that I myself take N-AC daily and that I have read studies stating that azithromycin and erythromycin have pro-motility qualities and very helpful for esophageal motility. You can also look into electro stimulation (TENS) of the vagus nerve… which was recently posted about on this board.

Hang in there and we will be praying for you and your mother. I believe there is always hope, even in the darkest situation.

Warmly,
A

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