On My Way to Healing and Longevity

[hopefulmama]

My name is Andrea and I am 34 years old.  I have three children, two boys (ages 4 and 3) and one girl (age 1).  They are incredibly boisterous, exciting, busy children and my home is rarely peaceful.  I love them more than anything in the universe and I believe that they were given by some divine force to my guardianship in this life because I have something special to teach them. 

I never knew before that what I was going to teach them was how to heal.  But apparently, that is my journey.

For the last year, I have known that something was wrong with me.  It started out with tingling in my legs (bilaterally) and then my hands.  I should mention that I had a flu shot on October 13 and the tingling started on October 23.  I had a very bad reaction to that flu shot, so who knows, maybe it stirred something up.  But I'd dealt with Raynaud's for a while even though I never knew that is what it was called.

I have seen so many doctors in the last year trying to figure out what was wrong with me.  Why I was losing weight.  Why I have felt so tired, etc.  I'm sorry to say that most of them pretty much brushed me off because my CBC was good.  There were a few abnormalities – rampant Hashimoto's disease, the Raynaud's, an EKG showing IRBBB (incomplete right bundle branch block) and arrythmia.  Mostly everything looked normal.  I was gently advised by more than a few doctors to see a therapist or go on an antidepressant.  They said the problem was in my head.

Now that my esophagus has stopped working correctly and I've tested positive for mycoplasma, people are taking things a little more seriously.  I wish that had happened earlier, maybe I would still be able to swallow solid food if I had found out about my illness earlier and gone on the antibiotic protocol right away.

But life goes on.  I still have dishes to wash, babies to feed, clothes to launder.  I am so exhausted I feel like I can barely hold my head up but I thank God that I am still able to walk and use my hands normally, and that I have found the AP and can go on it right away.  I believe that I have diffuse scleroderma but I also believe that the AP can help me just as much as anyone else.  I am young, I have a huge will to live, and I am willing to do whatever it takes.

Thank you for your friendship and support along the way.  I have started a blog too, to raise awareness about AP and autoimmunity.  You can find it at: http://www.autoimmunehealing.blogspot.com

Much love and blessings to you all.

[hopefulmama]

I am so thankful for this board.  Without it I would feel so alone right now, especially with my husband out of town and me here with the three kids.

I have decided not to go on the Inspire board any more, at least for a while.  It is too depressing.  When I am better, I will go on and tell everyone about my improvements through the AP.  But for now, reading the posts there just make me feel sad and desolate.  I don't understand why every single one of those people isn't trying the AP.  What do they have to lose? 

I would love to know how many scleroderma patients have actually stopped the progression of their illness with the AP.  I wonder if anyone is keeping figures on that?  I don't even care about remission, I just don't want to get sicker.  Tomorrow is my oldest son's 5th birthday and it hurts my heart to look at him so shiny and full of joy and excitement and realize that with the grim statistics about diffuse systemic scleroderma, I would be lucky to be here for his 10th or 15th birthdays.  There are so many things I have always looked forward to with my kids – like watching them graduate from school, find their paths in life, marry and have their own children. 

I have also been wondering whether I should get on an ace inhibitor.  Is that just supposed to lower blood pressure?  I wonder if fish oils can do the same thing? 

So many thoughts racing through my brain and my hands have been so stiff today.  I really don't need the ANA results back to confirm what is happening here – I can feel all of it in my body.  Can't wait to start taking the neprinol and I hope it does help reduce the thickening tissue in my back. 

Can't wait to get started on a treatment so I can feel less helpless, and get back to focusing on the things in life that matter most.  Don't want to be consumed by a disease, even if it has the power to consume me.  Hoping for the best!

Wish Dr. Brown was here.  Wonder what he would say to me.

[hopefulmama]

The main question on my mind is –

Why isn't every single person on the Inspire Scleroderma board trying the AP? 

What does everyone have to lose?

I get so frustrated by the people who say, “Oh it doesn't work.”  I even read some comment someone posted somewhere over the weekend saying how sad Dr. Brown would be if he could see what the Road Back Foundation has done with his work.  It made me so mad and frustrated!

Here is my point.  If even ONE person in the world, even just ONE heals by using the AP… when all of the doctors have said there is no cure and it only gets worse… then why wouldn't EVERYONE want to try it?  What harm is there in trying?  Antibiotics are so much less harmful to the system than steroids and chemotherapy drugs.  Especially taken in such low doses.

And more than one person is getting well.  I have personally heard from so many of you now that AP has worked for you – to varying degrees – but nobody is getting worse. 

Why is anecdotal evidence not relevant in the larger discussion about scleroderma?  What does it matter if it is anecdotal, if there are hundreds of people around the world who are getting better? 

I know I shouldn't waste my healing energy getting all hot under the collar about this stuff.  But seriously.  I feel wretched every time I go on the Inspire board and hear about how awful people feel and how depressed they are.  Seems like some folks just accept the diagnosis and the death sentence and aren't even willing to try to fight for themselves and their future. 

I hope over time I will be able to help raise awareness about all of this.  Sure, it may not be 100% effective for every single person who tries… but if it works for even one person, then the fact is – it works.

[hopefulmama]

I'm not living up to my username today.  Wish I could feel hopeful, but right now I'm feeling pretty sad.

One of the worst parts of the process of going through diagnosis (or misdiagnosis, or whatever I've been going through) so far has been a lack of support from my husband. 

He is such a great guy, I love him so much.  But he can't see anything physically wrong with me and he doesn't really listen when I tell him how much my hands and feet ache, or how uncomfortable it is for me to swallow.  He thinks all of this is in my head, and that it is due to stress.  I'm pretty certain that he believes if I just take an antidepressant everything will be fine.

We went up to Sacramento to see the esophageal specialist, after I was told by the radiologist at the best hospital in San Diego that my esophagus had stopped working in a manner consistent with collagen vascular disease.  He and the speech pathologist told me not to eat solid food until I could be further evaluated. 

The first appointment I could get was three weeks later, this past week.  I told my husband that he didn't have to go with me, I knew he needed to work.  He said he wanted to come. 

When the esophageal specialist re-did the esophogram he did not see a dysmotility.  He thought maybe it looked like GERD or eosiniphilic esophagitis.  We're still waiting on results from the biopsies.  He couldn't do the manometry right then as the woman who performs those exams was out of town.

My husband changed his tune really quickly about the trip at that point.  He grew frustrated with me for bringing him on an “unnecessary” trip, and he still doesn't quite understand that whether I have GERD or dysmotility, it doesn't matter – they are both symptoms consistent with CREST.  The only way we can truly rule out scleroderma is to see an actual rheumatologist, which thankfully I am doing (Dr. F) in about 10 days.

I have rarely in my life felt as isolated as I do right now.  Not being able to eat solid food with everyone around me is pretty isolating by itself.  Wondering if I have a rare collagen vascular disease and if so, if I will survive it, is isolating too.  But not having the support of my husband in this process is the most isolating part of all.  It is one thing to have a doctor tell you that your feelings of fatigue, joint pain and GI difficulties are all in your head.  It is another thing to have your spouse of a decade say the same thing. 

Today is a lonely day.

I really look forward to getting answers, no matter what they are, so I can move forward.  Thank goodness for this board and the AP.  Without the support of the RBF members ~ who actually DO know what I am going through ~ I don't know what I would do right now.

[hopefulmama]

It was the best of times… it was the worst of times.

That perfectly sums up my day.

IgeneX says I am IgM positive Western Blot and Indeterminate Titer 1:40 for B.b… so I guess that could be Lyme. 

Then my skeptical mind chimes in and wonders why none of this showed up on the Lyme tests my GP ran.  I wonder how one lab can say one thing and another can say the opposite.  I thought blood antibodies were supposed to be one of the few things that are pretty straightforward in this medical maze I am navigating.

Then I read a long article on Quackwatch about taking extended antibiotics, especially by IV, for a long period of time for purported Lyme.  And that people have actually ended up with major gallbladder trouble or even (rarely) died from taking the IV antibiotic route. 

Yes, I know, I need to make up my mind about how to deal with all of this and stick to one protocol.  I know.  But, Lyme is pretty serious and I don't want to rush into taking multiple antibiotics at high doses for years without a real diagnosis.

Beyond this, I worry that the LLMDs are going to say “Yes, you have Lyme” no matter what.  Not because they are trying to bilk me of my non-existent money… but because perhaps they see Lyme in every patient that walks through the door.  If you're looking for pink monkeys, you're probably likelier to find pink monkeys.

I am really hopeful that Dr. F will be able to shed some light on this.  Not being an LLMD, he might be more objective and able to look at my results with less biased eyes and help me figure it out methodically.

Sometimes I feel a tremendous lack of confidence in my ability to make good, practical medical decisions for myself.  I let myself get all worked up by the H1N1 frenzy last Fall and against my better judgment took my first flu shot (the regular one) in possibly my entire life.  Within 2 weeks all of the tingling and twitching eyelid stuff began.  I've never had any neurological symptoms in my life, and then 2 weeks after that darn flu shot everything started to unravel. 

I have not forgiven myself for that flu shot yet.

Or today, I got up the gumption to get the ACTH testing done, even though it required yet another IM injection.  I was terrified, based on the flu shot reaction.  And now, maybe due to exhaustion, dehydration from the blood draws, or getting jabbed by the needle in a wrong place, I have incredible weakness in both of my legs.  I am once again so worried about Guillain Barre – because I honestly think every time I get an injection I am setting myself up for problems.  Am praying so much that the legs feel normal tomorrow.

Hoping today won't turn out to be yet another day I have to forgive myself for.

I've got the 3 kids and every time I make what turns out to be a dumb decision, it is so hard not to get mad at myself.  I think “If you'd just NOT gotten that shot, you might have a long lifetime of happiness ahead with the kids – rather than everything that has happened in this last year”.  Hindsight is not only 20/20, it is also a great way to punish oneself for decisions that seemed smart at the time.

I am just worried that I'm going to allow myself to get sucked into the Lyme vortex without enough proof, and that I may have a terrible reaction to an unnecessary antibiotic.  I know that sounds silly, but this is genuinely where I am at right now. 

Do symptoms of Lyme include anxiety and paranoia 🙂  LOL!

Breathing in, breathing out.  Really don't know where the last 4 hours went.  Time for bed.  Praying for peace and health, not just for me but for everyone – and for the planet.

[hopefulmama]

Tomorrow is the BIG day.  I thought it would be yesterday, but it turns out to be tomorrow.  I begin my lyme protocol and take what I hope will be my first real big steps toward healing.  Actually though, I think the biggest step toward healing that I will ever have taken was coming to this board in the first place.  Without this board, and Cheryl's compassionate message to me about Dr. F and scleroderma, I might be bawling in a closet somewhere right now – so frightened of an unknown future. 

I guess since my adrenals are low, I'd better go get some sleep LOL.

Just wanted to check in, and to say thank you.  I'll keep my progress posted.  Right now I have a smattering of symptoms – some painful and some merely annoying, lots of anxiety, and lots of hope.

🙂

[hopefulmama]

Just a brief update because I've spent an hour already updating my autoimmunity blog.  I have been on Lyme treatment (well, the initial stages of rebuilding my immunity and balance) for a month now and everything is going well so far. 

I learned yesterday that I am positive for antibodies (IgM) for babesia microti, in addition to the borrelia burgorferi and mycoplasma pneumoniae that we knew about.

This is wonderful, another piece to the puzzle. 

My LLMD/ND said that I have the “good” kind of babesia, meaning much less severe.  For which I am grateful.  This doesn't mean that the cure is necessarily going to be easier or faster.  Still, I'll take any help I can get 🙂

In the past month since beginning treatment my brain fog has cleared up significantly and right now at this moment I feel more like myself (inside, in my head) than I have in a year.  My other symptoms are all acting out right now – the bugs (bacteria, protozoa) don't like to die and they are putting up a fight – but I am calm about it because I understand what is happening to me and I am prepared to wait them out.  I'm going to get well.  Hurray!

Whomever is reading this post, I really hope it brings you hope.  Three months ago I thought I was dying of a mysterious autoimmune disease that had no cause and no cure and now I am feeling so energized, optimistic, full of faith and full of understanding.  I have lost my fear of autoimmune disease and now I am on my own road back. 

So very, very thankful.

[hopefulmama]

I’ve been on lyme and co-infection treatment and progesterone hormone replacement for a little over two months now. Friday will be my 35th birthday, and boy am I incredibly happy to be here to celebrate it with my kids and my husband. I am amazed that over five months have passed since I first started having trouble swallowing at the end of June, and so relieved that I am eating normally and will be able to go out for dinner on my birthday with my husband. I vividly remember the five weeks of having to blend all of my food for every meal, and I never take a single bite of food these days without saying a silent prayer of gratitude for the ability to eat. You never realize just how huge of a part of human existence food is – in terms of shared humanity, community, and togetherness – until you can no longer participate in the ritual of eating. I am so grateful that I am participating again.

Many things are going very well, and then there are a few that still keep me up late at night worrying. I guess a little bit of worry is ok, since it keeps me very motivated to take all of the supplements and medicines, do the saunas, detox as much as I can and stay open to antibiotics and even PPIs if it comes to the point where they are essential. Especially hearing about other board members who have similar symptoms to mine, and who have developed pulmonary fibrosis, it keeps me wondering quite a lot whether I should get back on the Prevacid or try Zegerid. I’ll have to think harder and do more research to figure this out.

My husband always tells me to focus on the positive though, and he is right. So, here is a rundown of my current protocol and how I think the supplements are affecting me –

Progesterone: Less anxiety, more resilient, increased positivity. Enhanced libido, less pain in that region.
LDN: Better sleep, immense reduction of physical pain from spinal injuries
Teasel Root: So far no bad effects from 5 drops teasel per day other than a little sleepy in afternoon
Smilax: Once I decreased the dose a bit, it no longer had me running for the bathroom and I think it is helping my kidney function to stay strong
Anti-Parasite: This one is definitely doing something. When I increase the dose I get both exhausted and emotional. This one is supposed to help with babesia, maybe that’s why.
Turmeric and Bromelain: Anti-inflammatory and also good against babesia
Probiotics and Saccharomyces bouillardii: Amazing. Have helped my gut so much, really powerful and fantastic stuff.
Fish oils: I need to be better about taking these
Transfer factor Multi-Immune: I am glad to have done so well on the Transfer Factor sensitive that I was graduated by my LLMD to the next level… Multi-Immune. I hope that I do as well on this one so I can move toward the TF Lymplus!
Gluten Free: Undoubtedly one of the most crucial anti-inflammatory parts of my regimen. This makes an enormous difference.
Adrenal Health: I take 1-2 of these capsules a day and I really hope they are doing their job as my adrenals are very tired and my job as a full time mom is very demanding. I popped an extra one two nights ago when my 3 year old woke me up in the middle of the night, sick, with what could turn out to be whooping cough 🙁
Oil pulling: Extra virgin coconut oil and I have noticed after two weeks that my gums have stopped bleeding when I floss or brush. Which is a good thing, especially since gingivitis has been linked by research presented at this year’s ACR to rheumatoid factor.
Infrared saunas: These seem to really help. A few times I have gone in feeling like I was going to jump out of my skin, or my head hurt terribly because too many bugs were dying too quickly… and after sitting in the sauna for a while, I feel much better. I am especially happy that since starting the LDN my body is finally starting to sweat in the sauna, which it weirdly wasn’t doing before.
Food combining: This seems to be critical to my GERD problem, I just wonder if it will be enough. When I combine my proteins, vegetables, starches and fruits wisely there is a tremendous reduction in the amount of acid I have in my esophagus and throat.
Transdermal glutathione: You know, I wonder about this one. I’m not quite sure what, if anything it is doing for me – and when I didn’t take it for a few days, I think my skin dryness was better. Now that I think about it, maybe I should try taking a break for a few days to see if it improves the quality of the skin on my hands. Perhaps the glutathione is detoxing stuff through my skin…
Moducare: I really believe these sterols from the maritime pine which modulate the immune system have been a huge part of turning around my health crisis and making me so much stronger. I plan to take them for life.

Here are the positive changes I have noticed in my health in the past 2 months:

-Improved immune resistance and healing. My entire family got a vomiting flu, I was the last one to get it after nursing all of them and I was able to fight it off within 24 hours by myself without taking anything except chicken broth and my normal supplements.
-Improved pain. Since starting the LDN I have had minimal back pain after suffering terribly from chronic pain and inflammation from spinal injuries for five years.
-Better skin. For a while my skin was terrible with increasing acne but after two months on progesterone and all the rest of this stuff, my skin is looking clear and healthy. My hands have become awfully dry though – but members of this board assured me that it isn’t a sign of scleroderma and my dermatologist felt strongly that it was a contact skin reaction to the oils in the special anti-lice shampoo I’ve been washing my kids hair with. Oh, plus excessive dish washing and using the heater.
-Improved digestive tract and colon. My chronic diarrhea has disappeared and between the probiotics and LDN it seems like all of the mucosa is healing. My LLMD said I may even have put on a few pounds in the last month, which would be wonderful!
-Improved ability to eat and swallow without any sense of things getting stuck – inflammation much better. I don’t know if it is the gluten free, soy free, nightshade free, nut free or what… but it has been months and months now since I have experienced anything feeling stuck in my throat when I eat. And I’m not even taking a PPI!
-Slightly increased libido. Happy husband.
-Depression and lethargy much better. I have energy in the afternoons again and seem to be dealing with crisis much more swiftly, effectively and without feeling so totally overwhelmed.
-Better sleep. Since beginning to sleep elevated and also since beginning to take LDN I am sleeping so much better. My circulation is not cut off during slumber and I don’t wake up with my extremities cold and numb like I did before. I wake up feeling rested. What a blessing.
-IC symptoms largely improved. My IC flares are significantly gone, it happens to me only very rarely now and typically right before my menstrual cycle. IC is linked to babesia and babesia symptoms tend to cycle, so this all makes sense. I think that my changes in diet are definitely helping the interstitial cystitis.
-Weight gain? I need to check out a different scale to verify this one. The scale at my LLMD’s office is old school and I find it hard to believe that I’ve gained four lbs in a month. Still, if that turns out to be true – Woohoo!!!
-Multiple chemical and food sensitivity improvements. Five months ago I could tell if any food had been prepared with sea salt because my entire mouth would swell and my lips would tingle. Same for lemons. I also had problems eating many, many foods and I was getting hives at the drop of a hat from soaps, dishwashing liquid, shampoo, benadryl (it turned out to be the pink dye), penicillin (No allergy, but still having a reaction), etc. So glad to report that today I can eat sea salt, lemons, wash dishes, etc. and nothing is bothering me. The world that felt like it was becoming my enemy now seems friendly and benign again.

Two other nice side effects of my treatment so far have been that (a)I am spending far less money on doctor visits because I finally know what is wrong with me and have a team that I trust to help me through it… and (b) my husband is so happy that I am feeling better and less depressed, he has been much more supportive. So the whole family is healing 😀

The areas where I still really need to find answers are my anxiety and acid reflux. Especially during the 7 days each month when I go off the progesterone my anxiety skyrockets through the roof. I am also still concerned about the acid reflux, even though I’m not yet ready to get back on a PPI. I am trying to keep trying everything I can and give it time, but not too much time as I definitely do not want to damage my lungs. I was pretty stressed about the dry skin too.

I still have Raynaud’s, fungus issues (toes) and obviously there is hardly any motility in my lower esophagus – which I don’t know if it will ever improve. I have a moderately large disc herniation in my lumbar spine with canal stenosis and I really hope I will not end up needing surgery for that. Not to mention, after falling down the stairs a month ago I may have a mild rotator cuff tear and I’ve had extreme joint pain and stiffness in the one hand that took the impact of the fall. The LDN has helped with a lot of stuff but not that.

I really need to exercise more. It would be very good for me. My spinal injuries seem to act up terribly every time I try to do anything but walk, but lyme hates oxygen so I should try to run or rebound as much as I can… deep breathing can only make those little critters want to go find a different body to infiltrate and leave me alone!!!

Despite everything I am doing, I am still very worried on a daily basis that I am not doing enough. I wonder if I should be on doxy-zith-mino or a higher dose of artemesia with mepron. I am grateful to have health providers to help me make these decisions. I keep looking for signs that the lyme treatment is not enough, that scleroderma symptoms are progressing. I am worried that I will wake up one day with lung disease or hardening skin and that I won’t have acted swiftly or decisively enough.

I told my LLMD that I was worried that the treatment was not helping me because I hadn’t had a terrible herx yet, and she told me that was irrational thinking… that the whole point of doing lyme treatment is to feel better and if I am feeling better, then that is the best thing we could hope for. I hope she is right.

Lastly the three most important reasons for my being (and I suppose I am the literal reason for their being!) are my 5, 3 and 1 year old children and every day I thank God for giving me the chance to spend another day in their company and work harder to be more patient, more loving, and fully present with them. I pray every day that I will be here to watch them grow up and to help them along the way when they need me. If anyone is reading this, I would so appreciate your prayers as well. I believe that collective prayer is powerful and I will be praying for your healing too.

🙂

(With the permission of the RBF I will probably reprint the content of this post on my personal autoimmune healing blog, as it contains so much relevant information to my current treatment.)

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