Bloody Lymey

A Blog About Living with Lyme Disease

Yale University. Mehhhhhhhh.

I found this post in the Yale Alumni Magazine:

(http://www.yalealumnimagazine.com/blog/?p=15060)

“It’s post-Lyme, not chronic Lyme, new study suggests
“Posted by Carole Bass ’83, ’97MSL on June 25, 2012, 3:59 pm
“In the chronic battles over the existence of chronic Lyme disease, Yale experts have spoken loudly for the medical establishment. There is no such thing as chronic Lyme, they say.

“For example: ‘The Infectious Diseases Society of America has taken a strong stand against the belief that people are chronically infected with the Lyme disease bacterium,’ Yale epidemiologist Durland Fish said in a recent interview. ‘Unfortunately, a large number of patients have been misled by self-appointed lay experts. … The result is that a large number of people are being treated needlessly for an infection they do not have.’

“Now comes a Yale study that puts a different spin on the debate. It does not find evidence for chronic Lyme, but suggests that symptoms that linger after antibiotic treatment may be a post-Lyme condition caused by detritus from the dead germs.

“Lyme disease—named for the area of eastern Connecticut where it was first discovered—is an infection caused by bacteria called spirochetes and transmitted to human beings by tiny, scarcely detectable deer ticks.

“’Although the disease is responsive to antibiotics, up to 25 percent of patients treated early in the course of infection can experience protracted musculoskeletal symptoms of unclear etiology,’ write the authors this week in the online Journal of Clinical Investigation.

“In other words, patients still hurt, and the doctors don’t know why.

“Led by Linda Bockenstedt, researchers at the Yale School of Medicine examined Lyme-infected mice after treating them with antibiotics. They found that the bacteria—and therefore, the infection—were gone. But proteins from the bacteria persisted in the mice’s joints and near their cartilage. And the animals’ immune systems produced antigens to attack the dead stuff, causing inflammation and potentially arthritis.

“’This study provides the first direct evidence that spirochete proteins can remain long after the bacterium is gone, and in places where people can experience symptoms after treatment for Lyme disease,’ Bockenstedt says in a Yale press release.

“Full disclosure: I’m currently being treated for Lyme disease after lab tests confirmed a recent infection. I plan on a full recovery.”

I love this rebuttal in the comments area:

“Christine Lydon, MD says:
June 27, 2012 at 9:59 pm
Dear Ms. Bockenstedt,

Thank you for affirming that chronic Lyme disease does not exist and insisting that Lyme infection is self-limited and cured by two to four weeks of oral antibiotics; this is of enormous comfort to the 85% of us who never fully recover, and the 40% of us eventually commit suicide.

Thank you for collaborating with insurance companies to create guidelines that preclude coverage of our medication and force doctors to risk their licenses for having the audacity to treat us past the four-week mark.

I just have one question for you: Since this disease is all in my head, why is it that I am prohibited from donating blood? Certainly there is no risk that one could “catch” an illness that, by your own assertion, doesn’t exist. And aside from the crippling symptoms of chronic Lyme disease that manifest solely as a result of my overactive imagination, I am a veritable picture of good health.

To illustrate my gratitude, I ask that you please allow me to donate my blood to a special blood bank for you and your family. I have a very rare blood type– it could prove invaluable the next time one of your children’s survival depends on this gift of life. Thanks to your guidelines, it turns out that I am not actually sick. There are no words to express how much it would mean to me if I could return that favor.

Yours Very Truly,
Christine Lydon, MD (Yale School of Medicine, Class of 1994; currently bedridden and unemployed)”

As for me?  I’m wondering why the F**K the medical community is stuck on semantics and proving that there is or isn’t Chronic Lyme and why aren’t they taking this energy and putting it toward fixing whatever they suppose the freaking problem is? !

People have had the audacity to tell me I’m just “used” to being sick.  Well?  How do you explain my 10-month remission? How do you explain the millions of people with this issue???  There’s the power of positive thinking and most every day I have moved forward in optimism — that’s not something that someone who is “used” to being sick does.  I’m outraged.

Anyone want to start a letter-writing campaign?  At the time I had read this article, it had been published not quite 3 days prior and the comments are already closed (you ought to read some of them!).  I find that to be terribly interesting.

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Apple Cider Vinegar! AKA ACV and More Alphabet Soup ….

This may seem like it has a slant toward women initially and monthly stuff, but bear with me! It pertains to everyone!

Prior to my “riding the crimson wave” this month, I got EXTREMELY bloated — and honestly, my monthlies have not been the same since acquiring Lyme. I took Midol. NUTTIN’. I bought diuretics at the pharmacy. NUTTIN’. I did an epsom salt hot bath and sweated 1/2 an ounce.

Finally? I figured it’ll be better after the fact. It wasn’t.

In desperation, I looked up home remedies for bloating on Google. An overwhelming result was Apple Cider Vinegar. The consensus seemed to be to drink 2 Tablespoons in an 8 oz glass of water ….. some suggest 3X/day while others said once. I did that and ate a banana (another remedy I read about for absorbing sodium), and peed magnificently the next day.

But there was more. My face went from being puffy and pale to leaner and a little pinker. My energy was far better. I didn’t crave sugar. My joints were a teensy bit creaky, but this is GOOD. I did it again the next day. I urinated magnificently again — thundering yellow waterfall! (OK, probably TMI!) My energy remained better. I felt kind of normal – still do!

I googled other uses for A.C.V. Did you know:

1. It’s used for arthritis?
2. It’s used to treat fatigue?
3. It’s used to treat heartburn?
4. It’s used for weight loss — partly flushing water, partly appetite suppressant?
5. It’s used for I.B.S.?
6. It’s used for yeast infections?
7. It’s used for wart removal?
8. It’s used to improve hair texture — making it more lustrous and smooth?
9. It’s used, too, for everything from diabetes and hot flashes to lowering high blood pressure and relieving Gout symptoms?

Wow. That’s a LOT. It made me wonder WHY.

Not All A.C.V. is Created Equal:

Ever notice when you buy vinegar, some are cloudy while some may be colored but possess a sparkling clarity while some others have clots and floaters? I guess you want the most stagnant, nastiest-looking one possible. This possesses something the others don’t: “the mother.” “The Mother” is rich in antioxidants, mineral content, probiotics, nutrients, etc. It also has cancer-fighting phytochemicals. ACV also contains soluble fiber that binds to cancer-causing agents in the colon and flushing them.

This “mother” also contains pectin, which lowers cholesterol.

ANY ACV:

What all of the vinegars have in common – no matter the cut, clarity or …… no …. wait …. content, cloudiness/clarity – is that they all balance the body’s PH balance. It makes us more alkaline and more acidic, naturally neutralizing whatever our imbalance is. This is good for the common COLD. It is good for the IMMUNE SYSTEM — and boy, couldn’t we use that? ACV is reputed to be antimicrobial (antibacterial, antifungal, antiviral….. just a bunch of beautiful ANTI!)

Many “recipes” or “prescriptions” recommend pairing it with honey. I haven’t tried this yet (and still have my Manuka Honey to get into next month, after my labs).

Me:

Personally, I simply grabbed the one I had — the pretty clear one, Big Y brand. This has been relieving my bloating. It’s energized me substantially. My joints are better. My sleep cycle even seems better. The lymier I am, the fewer dreams I have – or at least my recollection of them is absent. I’m dreaming again and I wake up feeling more rested. I think this may be tied into the fatigue.

For a broad range of uses, go to: http://www.apple-cider-vinegar-benefits.com/home-remedies.html

I hope this helps.

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Can’t You C? Cannnn’t you C? What that Vitamin’s …. a’ Been Doin’ to Me?

Those of us with Lyme Disease often take matters into our own hands, having little help from the medical community. We read blogs and are warned “this is not a substitute for expert medical advice.” Well? Sometimes “expert medical advice” is little more than “you’re depressed” or “you completed the course of antibiotics – you’re fine now!”

There are many supplements people recommend to support our immune systems and one that springs to mind is Vitamin C. There’s the Himalayan Salt and Vitamin C Protocol – see? I mean …. C? It’s even in a TITLE of a PROTOCOL.

It sounds so SAFE. Doctors tell you to pop some when you have a cold. And it’s WATER SOLUBLE! It’s easily flushed from the system and it snuffs the common cold. How bad can it BE? A world-renowned chemist, Linus Pauling, thought it to cure everything from the flu to cancer. He reportedly consumed the equivalent of 280 orange’s worth of Vitamin C per day (so he believed this stuff!)

A coworker of mine has kidney stones. She had literature about the causes and there were some such as not drinking enough water, diets very very high in protein, and too much Vitamin C. [insert record-scratching noise here.] Huh?

Other risks include a possible link to osteoarthritis – do we Lymeys need THAT? Nawwww.

Vitamin C – in excess – is also attributed to:
* GI problems such as diarrhea, nausea and vomiting
* Insomnia
* Bloating and abdominal cramps
* Headache
* Heartburn
* Dental Decalcification
* Increased estrogen levels (and this can put one at greater risk for breast cancer)

I did happen to notice – and perhaps you did, too – that DEATH is not listed on there. And of course it’s not. My research has resulted in physicians and “experts” stating that there are no known cases of overdose leading to death. So that’s a plus!

Exercise produces ROS (Reactive Oxygen Species) and Vitamin C is thought to hinder this. ROS expedites the metabolism and improves insulin production.

The recommended daily allowance of Vitamin C is 65 to 90 milligrams per day. This is equaled to one large orange – or 1 cup of strawberries or vegetables such as broccoli. Experts recommend nothing in excess of 2000 mg/day. Your body supposedly uses what it can and then the rest just makes your urine neon – and if you have a black light in the bathroom, this can be COOL. Or … no. Wait. That doesn’t work. [damn.]

In my cupboard right now is an everyday supplement of 1000mg. The label says this is “1667%” under “% Daily Value.” Yeah. This sounds rather excessive now, while just the other day it sounded rather “kickass.”

A rather old article in the NY Times [circa 1998] – and who knows if the data has changed in the past DECADE or so – suggests it may even be responsible for genetic damage! Yes! Damage to the GENES. The Brits that arrived at this conclusion maintain that a mere 500 mg/day could be responsible for this, using the term “pro-oxidant” as well as “antioxidant!” Here’s the article:

But let’s not run away screaming from it yet. According to the Mayo Clinic, Vitamin C is known to do more than combat cold symptoms. It is also known in the medical community for elevating mood, helping alleviate fatigue and depression. It’s thought to thwart cataracts and to be an insurance policy against certain forms of cancer. Vitamin C is my standby for cold sores; it seems to expedite their healing.

I guess the message is “Everything in Moderation.” Take good care of yourself!!!

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Candida – We Can Make It Together… The Further From Here Girl the Better

Candida – n. : 1. Title of a Tony Orlando and Dawn song from the ’70’s
2. A genus of yeasts

I am tempted to write my theories about why Tony Orlando would sing about a girl so unfortunately named, but I shall resist that urge. Candida overgrowth – aka Yeast Infections – can be a testy subject for us Lymeys.

Yeast Infection. This term conjures up images of Monistat commercials – particularly the one of the pretty blonde lady who can’t enjoy her fitness class because of itching, discomfort and odor. But it can happen to anyone – male or female – and can effect us anywhere dark and moist. One of the most desirable places would be inside the digestive system.

Antibiotics can aggravate this, and long-term use of antibiotics can invite this vampire into the house. Daily doses of probiotics and/or a serving of yogurt can help prevent this ailment. Sometimes, however, despite our best efforts we are afflicted nonetheless.

In the course of this blog, I have gone on the 17-Day Diet.

I know. I know! You’re probably cringing and resisting the notion of this fad diet, this diet that has a book out – a top-selling book. You’re probably thinking about things such as money and some carb-loathing author with unrealistic expectations. But I will tell you that the first 17 days are the epitome of detox diets. It’s cleansing. It’s short-term. It has a beginning and it has an end and it might even reduce your inflammation! Yes! Joint pain …. it might improve. Mine did.

This diet stabilized my digestive system, too.

So how do you know if you have an internal yeast infection such as this? Here are some symptoms (according to the website: http://www.womentowomen.com/digestionandgihealth/candida.aspx):

Common symptoms associated with systemic yeast
While many of these symptoms can be caused by conditions other than candidiasis, a woman suffering from a yeast syndrome will often experience body-wide symptoms in association with this condition. Because of the widespread nature of these symptoms, candidiasis is often referred to as systemic yeast.

Generalized: Fatigue, lethargy, migraine headaches, weakness, dizziness, sensory disturbances, hypoglycemia, muscle pain, respiratory problems, chemical sensitivities.

Gastrointestinal: Oral thrush, diarrhea, constipation, rectal itching, irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), flatulence, food sensitivities.

Genitourinary: Yeast vaginitis, menstrual irregularities, PMS, bladder inflammation, chronic urinary tract infections (UTI’s), cystitis.

Dermatological: Eczema, acne, hives. People with yeast overgrowth can also be prone to fungal nail infections, as well as skin infections such as athelete’s foot, Tinea rash, ringworm, “jock itch” and dandruff.

Psychological and emotional: Confusion, irritability, memory loss, inability to concentrate, depression, insomnia, learning disability, short attention span.

Who is most susceptible?

* A diet high in refined carbohydrates and unhealthy fats
* Inadequate dietary fiber
* Impaired immune function (typically due to stress or illness)
* Use of medication such as antibiotics, steroids, birth control or other hormonal therapy
* Environmental or food sensitivities

(*I am sourcing the same website: http://www.womentowomen.com/digestionandgihealth/candida.aspx * But let’s not judge it based on the “women to women” title – it’s good for men to know as well since we’re all susceptible to internal candida overgrowths)

This following link is awesome, too: . http://www.richardhackworth.com/article2.php Howwwwww everrrrrrrr – there seem to be thinly veiled attempts to sell supplements at the bottom. He has a self-quiz, a more extensive list of symptoms, and means of determining if you have yeast at home with a glass of water. No mail order stuff. No lab work.

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Epsom Salts …

I have long maintained that Epsom Salts are beneficial to my symptoms. They help with everything from joint aches and general malaise to fatigue and muscle aches.

This article mentions something else – the boost to the immune system (which we need!)

http://www.livestrong.com/article/141261-what-are-epsom-salts-for/

It mentions in passing the benefits of Magnesium in Epsom salts. I found another article, too, about it being suspected as beneficial to people who are autistic or suffer from neurological symptoms.

Sometimes we have messed up GI symptoms – specifically constipation. Epsom salts can help with that.

At a corner drug store, it can be a bit pricey for a small carton of them. I try to buy mine at the Christmas Tree Shops when I am near one (there isn’t one in town) or at BJ’s warehouse. Look around in your neck of the woods – I’ll bet you can find some for a couple of bucks. 😉 Salt is thought to have antibiotic properties, too.

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Tired ………

I haven’t written anything in a while. The reason is that I’m very very TIRED.

I’m working 30 hours per week and doing my internship (which, after paperwork and averaging my commute to school and class time and homework and reading assignments, averages over 24 hours/week). So I’m doing 54 hours per week. And I have chronic lyme disease.

Somedays I’m just a “normal” tired – a regular Joe who’s had a long day. Other days it’s debilitating. I’m taking at least two hot baths each day.

Last week my symptoms changed. My muscle fatigue was always a very distinctive kind. My arms felt like lead and my legs felt not much lighter. Last week, my legs were shakey and weak – like I totally overexerted them, even though I wasn’t on my feet any more than usual. My arms and hands were shaky, too, like I had lifted way too many weights. The shakiness was actually quite embarrassing. I’m sure no one noticed but me, but I felt like the whole world could see. I kept my hands in my pockets a la Napoleon.

A strange sensation started in my feet, something like jumping embers. It burned, burned, BURNED but was unlike the ‘stabbed with a hot poker’ sensation I’ve become accustomed to over the past few years. The jumping embers sensation was quite stunning.

I’m scared.

I don’t have insurance right now except “Mass Health Safety Net” so that if I wind up in a fiery car wreck, I’m not going to wrack up a big debt – and someone might even save me! It doesn’t cover prescriptions (mine amount to about $80/month, which sucks to pay out of pocket but isn’t prohibitively expensive) or checkup’s with the doctor. I had to cancel my appointment with my specialist next week. I can’t afford an office visit out of pocket. And? I could obviously really use a visit with her!

My insurance problem stems from losing my job in the spring, getting on unemployment and now having a new job. Unemployment won’t cover me any more and my new job doesn’t cover people until the 1st day of the month following working for 60 days. Unfortunately I started work on the 5th of the month or something so it’s closer to 90 days without insurance.

Funnnnnnnnnnnnn.

I’ve also been struggling with diarrhea for the past two weeks. My son had it for a day so I’m wondering if it’s some viral thing that I’m having trouble kicking because my immune system is compromised.

I can’t be on the anti-inflammatory diet now because my stomach can’t seem to tolerate much more than a bagel or something bread-like. The fruits and veggies aggravate my symptoms.

I think I’ll try my boss’ advice and go for some fresh ginger.

With my illness I have good days and bad. I’ll try to keep my sanity and weather the bad times until the good ones commence yet again. I know they will. Keeping that faith keeps me going.

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Herx Reaction & Lyme Treatment

You’re feeling BAD. Sore knees, nerve pain, headaches, fatigue, muscle weakness, dizziness, malaise …. all of it. You can hardly move.

Then you’re TREATED for it! With dull optimism, you gimp into the pharmacy and get the ‘script. You get home and take one. The next day, you take another, then later you take another …..And … you feel worse. You didn’t think it was possible, but your body hit rock bottom and grabbed a shovel and kept digging.

So you want to stop the antibiotics. You want to stop whatever protocol you’re on. Don’t you? Of course you do.

*** And if you’re on antibiotics, it might be wise to ensure this is not an allergic reaction. If your symptoms are out of control, then go to the ER to make sure this isn’t serious. ****

And if it’s not an allergy… then ….

What is happening is a GOOD thing. That extra pain. That comatose-caliber exhaustion. That inflammation. That weakness. That “wanna curl up into a ball and DIE” feeling. It’s called the Jarisch- Herxheimer Reaction, and sometimes simply the Herxheimer Reaction, shortened to the peppier nickname “Herx.”

Lyme is caused by a spirochetal bacteria. Another such bacteria is syphillis. In the 1800’s, two separate dermatologists noted syphillis patients getting worse before they got better. The bacteria releases toxins and the human body can’t detoxify quickly enough, hence an autoimmune response, hence lots of pain (inflammation) and exhaustion.

The bacteria that causes lyme disease can mask their own antigens and our immune systems don’t always detect it. Once it does detect it, the inflammation starts and the pain and fatigue start because the immune system has been alerted and is now fighting the infection. The bacteria then alters its antigens and is disguised again.

The Herx reaction may be worsened when the bacteria reproduce – there are growth spurts every 3-4 weeks (sometimes 6 weeks). A long course of treatment may result in several Herx reactions, and may be spread out during the replication.

It is also important to continue treatment before, during and after the Herx reaction (and not everyone gets them, particularly if the disease hasn’t progressed far enough and the patient isn’t as inundated with spirochetes). Many people have lyme relapses because they don’t finish their antibiotics. Many more may have chronic lyme disease because of not finishing their protocols.

I know there have been times I’ve taken breaks from my antibiotics. I just went off the salt protocol because my Herx reaction was overwhelming.

How long a Herx reaction lasts seems to follow with how long you’ve been sick, how sick you are, how ingrained the bacteria is in you, etc. It can last for a few hours, a few days or a few weeks [gulp].

There are things we can do to get through the Herx Reaction:

1. WATER , water, water – I’m guilty as HELL of not drinking enough. I love diet soda. I love coffee. Water just makes me pee and it seems like it doesn’t sustain the moisture in my mouth the way carbonated things do. But this is the key in EVERY article I’ve read and in EVERY person I’ve spoken to about the subject. If you do nothing else, do this. And make sure it’s 2-3 quarts/day during treatment.

2. Epsom Salts – toss this in a bath. The bath will make you feel better, even if marginally, and the salts will help extract toxins from your skin

3. Milk Thistle – this is a supplement that supports liver function

4. Peppermint Oil – this is reputed to quel nausea and to help with headaches. Sniffing it helps.

5. Peppermint Tea – see above

6. Nattokinnase – a supplement that is reputed to help cleanse the blood (*Note – it’s made with soy. Don’t take it if you’re allergic*)

7. Vegetables – dark, leafy greens are supposed to be the best and most antimicrobial

8. Fruits – makes your liver’s job easier than eating junk food and lots of chemicals

9. Cut back on sugar – mehhhh. They say that Borrelia burgdorferi LOVE feasting on sugar … hmmmm. I don’t even want to think I make them happy.

10. Cut back on caffeine – MEHHHH! I don’t want to. They say that they get what we get and this makes them more active. It may also aggravate some of the symptoms. Mehhhhhh! Who can cut back on caffeine when they’re exhausted?! I guess if the pain is great enough, I will.

11. Benadryl – they say this is good if you get a rash. I’ve read it can be helpful even if you don’t have a rash! However, if you’re prone to feeling tired on Benadryl then you might find it exasperates the symptoms of the Herx Reaction

12. Alka Seltzer Gold – they say this can bring more alkaline to your blood and may be beneficial

Armed with this new information I’ve researched (and relayed to you), I’m going to try the salt and vitamin c protocol again!

*** By all means, stick to your treatment. Follow medical advice. Don’t stop doing something if it’s clearly working! Loved ones are going to HATE seeing you doing badly. They are going to wring their hands in despair and they are going to want to FIX this for you. They might recommend you stop treatment. Keep your eye on the ball. Remember they are good intentioned. Also remember that there is a deplorable infection in your body and it’s dying. Keep doing what you’re doing. Have a funeral for the little varmints. Do something funny. Visualize their die-off. Revel in it. ***

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