Tag: Lyme

Food Allergies & Sensitivity

Many people with Lyme develop difficulty digesting common foods. I have always had unexplained GERD (Gastroesophogeal Reflux Disease). I have struggled with it since I was a child. Doctors never knew why. I think it is due to Lyme. They have never been able to give me a good reason why my esophageal sphincter doesn’t close.  No not your butt one! the one above your stomach. It is a sphincter too.

No Wheat 

I dont know if it is gluten or just wheat, but if I eat wheat my joints are painful, my face and eyes are puffy, my body is generally puffy, my podge sticks out, my reflux and asthma acts up. I am exhausted, and feel like I have a hangover.

For the past six years I have learned to never cheat on this, it is so not worth it!

Six years ago, when I started feeling joint pain, migraines, fatigue, brain fog, asthma and indigestion, I stumbled on a Wheat Belly be skinny type article. I was shocked to see that all my ailments were possibly aggravated by stupid wheat!

More importantly, when I did cut it out, I saw my fibro type symptoms nearly disappear. It was all inflammation.

Whole body inflammation, which in time (and I know its true because of my 74 year old Mom who’s knees, shoulders, wrists, and back have all had surgeries by now).

In time will destroy your ligaments and joints. The stomach acid will cause asthma, and erode your esophagus.

Sugar

I limit all added sugar, and even did a strict candida-fighting diet for one month. It really helped.

Today, when I eat too much sugar, body pain, fatigue, and acid stomach appear. If you have Lyme, you have to remember you are not normal. Your goal is to eat NO added sugar.

It is hard for me.

When I splurge, I try a bite or two of cake instead of a piece. I eat a doughnut hole instead of a doughnut. I have a few sips of dry white wine, then pass it across the table to my dinner companion.

Animal Protien

About a year before I was treated for Lyme, I found myself having a lot of motility issues. It was like my digestion would freeze for days, then suddenly work out of the blue. Through a lot of reading and an ultrasound that gave me a few clues, I decided to try to stimulate my gallbladder function.

I avoided most animal proteins/fats — no eggs, or meat. I did still consume a little dairy, but dialed back on cheese. Cutting these lightened the load on my digestion.

I limited and started cooking goitrogenics, which are known to ultimately slow the thyroid and ultimately, digestion. For me that meant not eating that delicious raw kale salad 3 times a week, and making brussle sprouts for supper, and eating so much arugula in between.

I started eating an apple a day, and drinking a glass of apple cider vinegar in water, particularly if I had cheated and eaten a fat.

I also started popping a couple Beano tablets before eating. They don’t just control gas, they contain digestive enzymes. Eventually, my digestion improved, even before Lyme treatment.

Today, if I am going to eat a steak, I definitely take Beano, and follow it up with the apple cider vinegar to aid fat breakdown. My partner has genetically high cholesterol, so now he does the same!

 

 

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My DIY Candida-Fighting Diet

Lyme affects your body’s ability to deal with yeast, and any antibiotics past or present will only compound the issue. A lot of normal people have issues with candida too. And normal docs are fucking CLUELESS about how systemic an issue this can be.

When my boss told me she had been bedridden 10 years ago with candida, I thought, “Well I don’t need a prescription to try fighting this with diet. I have nothing to lose.”

I don’t understand why anyone with chronic fatigue, pain, or reflux would not test it out. There is something about knowing you only have to do it for a month, that makes it okay. You don’t need expensive ingredients, and can eat all you want!

So for just ONE month, I did a meat and vegetable ONLY diet, (no rice, bread, potatoes, corn chips) no dressing but apple cider vinegar based, no soy sauce, no high fructose corn syrup, and NOOO alcohol, soda or sweets.

I didn’t even really know what I was doing, and some strict dietitians might tell you to avoid some of the things I ate, but still, my crude attempt gave me a real boost. Like a REAL boost! Amazing. Life still sucked, but I could walk easier and my joints and fatigue, brain fog, and gut acid and asthma lessened.

I was so thrilled I found something tangible I could control!!!!!!

I always know my yeast is flaring if my tongue looks white, my stomach acid is churning, and my muscles and joints hurt worse.

————

Breakfast
Plain full fat, greek yogurt with walnuts
coffee.

Lunch
Arugula or other lettuce with shredded carrots or other pre cut up vegetables.I’m not into cooking. I bought pre-boiled hard boiled eggs so I could just throw a few on the salad.

Dinner
Any kind of meat and vegetables. Let yourself have butter and such. Cheese is okay too. I kept string cheese around.

Snacks 

I allowed bananas, grapefruit, cashews and plain vegetables. Add in a few sips of kiefer throughout the day.

———

Today,  I can eat some grains, and starches and a TINY bit of sweets. When I overstep I can feel it. I just get strict for a day or two, drink some kiefer and kombucha, eat saurkraut to get back in balance.

There are also many good herbal supplements to combat yeast. Later post to come.

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To Drink & Not to Drink

When your body is out of whack, beverages can be your best bandmate, or charming backstabbers. In my experience, their power is potent, so I try to stick to some rules.

No Alcohol – Really!! All that sugar is like cryptonite. Lyme sufferers are always low on magnesium. Alcohol depletes magnesium, and messes with your whole body. Double whammy! Take a sip or two and pass your glass to your dinner companion!

If I drink even a glass, I feel like shit the next day or two. The sugary content in wine hurts me, but I really think it is the magnesium depleting aspect that does the most damage. Even nice tequila, just one shot, can backfire some days. I still test it every few months ;-).

No Diet soda – Why? It is the devil. Full of fake sweetener and no benefits. Stay away from fake sweeteners in general.

No Soda – Too much sugar. Plain sparkling water can be your best dinner friend.

Kiefer – Plain is the best. Others can have more sugar.  A swig or two a day of this probiotic helps fight gut imbalance and yeast.

Green tea – A cup a day really helps fight candida, inflammation, allergies and makes you feel better. Post IV treatment, the green tea feels even more critical to me.

Kombucha – Expensive per bottle, but I don’t guzzle a bottle at a time. I drink like a few gulps a day. A bottle lasts a week or more for me.

When everyone around me is drinking wine or beer, I pour a little kombucha in a wine glass and drink a WHOLE glass and I feel like I am being decadent. Also good to take a sip when you have a soda craving. Theirs practically no sugar in it and it naturally fights candida/yeast.

Cayenne pepper – I think this helps my brain perfusion issues. I put it in my eggs and on my gluten free pizza and pasta dishes. I have even added it to coffee.

George’s Aloe – this is a colorless, tasteless aloe, that has natural irritants refined out. I take a swig every day or so. You don’t have to drink glasses of it or anything. It sooths my gastro linings. Very important to help your stomach tolerate oral supplements and meds.

I even add this stuff to my cat’s water dish to ease her digestive issues. A vet turned me on to the stuff. Available at Whole Foods, Walmart, and Amazon.

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Exercise a bit

Your body hurts but you cant let your muscles get in a complete downward spiral. When I was in the worst few years post-lyme infection, I bought a FitDesk.

My FitDesk awaits, while Mr. Hats looks on.
My FitDesk awaits, while Mr. Hats looks on.

My intention was to exercise at home, without subjecting myself to air pollution. I had also read some convincing personal accounts about how regular intense exercise helped some people heal from Lyme. Lyme doesn’t like high temperatures, so maybe that is why.

The intensity that you can exercise  may depend on what tick-borne co-infections you might have. But don’t stop using those muscles alltogether.

I did not have the energy to  “work out,” but I tried to keep some muscle. I pedaled really, really slowly on a super easy setting. For a long time it was the lowest setting.

While on the bike, I watched movies and masterpiece theater, or browsed the internet on my iPad. Usually, I also ate food and drank green tea!

With so many distractions, it was tricky not to overdo it.

My legs would feel weak and hurt when I got off, but during the ride I didn’t notice.  If I pedaled to hard, or too much, I’d end up limping with swollen legs. But circulating the blood helps filter the crap out. So it helps things like systemic inflammation.

Riding had a whole other affect on my head. The circulating of my blood also helped my brain somehow. As my head pressure built up each afternoon, I found myself craving the bike. Many days, the only time my head let up, what when I was pedaling.

I don’t recommend pushing yourself if you are ill. My Lyme doctor encouraged me to move, but said my muscles would not really increase till I was free of some infections. The normal ability to build or repair muscle was inhibited.

I still crave the bike now, when late afternoon head pressure hits. I also rely on it emotionally.

This illness has been hard. So many months I felt lost and confused by my treatment options. Often, I was not making any progress, and getting even sicker. Sometimes, the only positive thing I could think to do each day was ride my bike.

Riding was nearly the only time I didn’t feel like I was crying inside. It was often the only part of my day that felt like I was moving forward. Ridiculous, but the only time I could move forward, was on a stationary bike. The irony did not escape me.

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Medications for Symptoms

Even though they don’t fight the illness, some medications will help with symptoms.

Vyvanse

Recently my Lyme doctor prescribed this. Its an ADHD med. It does WONDERS for my energy, brain fog, and even what I realize now has been perfusion issues with my brain. My perfusion issues, typical of Lyme, were confirmed at Columbia using a SPECT scan. A family doc or nuero or psychiatrist can also prescribe. It feels very different than Adderal.

Meclazine

It’s an over the counter anti-nausea, motion sickness pill available next to the Dramamine in your drugstore. I started taking it a year ago. It seems to have ZERO side effects for me, unlike dramamine.

Lyme has been affecting the nerves to my ear and causing peripheral vertigo. My neurologist diagnosed me and it sure has helps me to take Meclazine on vague symptom days. I don’t get full on room spins, so I didn’t realize what was happening till one day the room did spin a bit!

Usually my vertigo symptoms are more subtle. I just feel frustrated and overwhelmed easily, and have bumped into walls at times. I feel a little clumsy and tired easily. Scrolling anything on the computer just feels awful when you have vertigo.

Pot

This helped me before and during treatment, for back of head pressure, and the awful whole body wired that hits in the middle of the night.

I’ve never been a smoker, I’ve always been a tequila/prosecco girl, with no desire for pot, but resorted to it for this when I hit the bad six month mark post treatment for acute lyme, and it was a godsend.

I used blends that did not make you sleepy in the day, and helped neural inflammation (sativa) I used a vaporizer and some kind of oil. It was all that would help.

I don’t seem to need it these days. But it was critical for nearly a year.

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I am scared, but encouraged and hopeful

When I stopped the IV antibiotics in late November 2016, I also happened to be in the middle of investigating a suspicious breast lump. A stress-filled two months later, I had a mastectomy and DIEP reconstruction.

DIEP is a new reconstruction  method that replaces your breast with tissue from your abdomen, kind of like a tummy tuck, but you move the fat. I was naturally worried, such a physical attack would cause me to relapse with Lyme.

I am writing this almost two months post surgery. It kicked my ass, as expected, but  I healed very quickly compared to most breast cancer patients!

Today, I am still having hot flashes, which concern me, and still fight vertigo symptoms and some head pressure. I have fatigue, again as expected, but I have not seen my worst Lyme symptoms come flooding back.

I ride my exercise bike for two hours each day, and I am ramping up the settings from a sleepy casual pedal to a faster churn. This is a big deal!  Four months ago, the fast churn would’ve had me limping the next day with swollen legs from mitochondrial issues.

I may be ready to build muscle again 🙂 I am also trying to work on my arms, which are beyond weak.

My Lyme doctor tells me that if I do relapse, treatment can address it quickly. I may be down for a couple weeks or a month. That sounds inconvenient, but like a cakewalk after all these years.

Until they make more treatment breakthroughs, Lyme and the other tick illnesses in my body will always be there. I can not burn the candle at both ends, or run myself ragged. They will take hold, if I do.

My whole life was disrupted. It was not only derailed for several years, but permanently changed. Casual friends are gone. Old creative goals are gone. Old jobs are gone. Financial independence is gone. My muscles are nearly gone. My left breast is gone.

I have a lot of catching up to do with my partner, family, friends and pets. I’ve been in life in recent years, but like an erratic ghost to all who know me.

But in about a month, I am planning to start working, living and enjoying myself. Right now I am still very much in a chrysalis.

 

 

 

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Hey pop stars… How you doing?

It’s funny, but I now find an odd concoction of Lyme-ridden pop stars relevant to my life. Some of them got sick when I did. Some have been sick for years. Their experiences are eerily familiar to me.

I am always pissed they don’t dish on their EXACT treatments. But it is helpful for me to hear them talk about what their bodies are (or were) capable of at different points in time. And how they get by now.

hannasplitKATHLEEN HANNA on a rebound in Spain.(GIF from Pitchfork.com)

She got diagnosed about a year before me. I had read she cancelled a tour a year or so ago. Imagine how I felt one day, when I wanted to peek at her blog to see how she was doing, and BOOM! There she is in video cartwheeling into a split on stage in Spain !

She has her ups and downs, but I often wonder if I will get to have any more “ups.” The rock-n-roll acrobatics were certainly inspiring, even if she can’t do that every week.

There is an excellent documentary on her which also covers the Lyme experience that is still part of her daily life — The Punk Singer. It is such a real example of how Lyme can take a dynamo’s life and turn it upside down.

 

1460348459258JOHN LURIE painting Wolf by day. Wolf by night, watercolor on paper, 20″x14″, 2015

Lurie had to stop his incredibly complicated music, and now he paints. I myself have issues with music these days, I had been dabbling in recording again around the time I got sick. Now arranging recordings is just confusing. I sometimes have a hard time even listening to music. This makes me sad, but am still very comfortable with visual art.

This article  touches on John, his illness, and his current and former art, which are cool.

debbie-gibsonDEBBIE GIBSON‘s gaunt Lyme look worried fans and inspired critics to attack.

We entered into Lyme with the exact same symptoms. Poor thing had the whole  Gee, I can’t seem to digest meat.

She got lost driving. I got lost walking.

And the all too familiar — not having kids, and wondering if you would have tried if you never had Lyme.

Today she is looking healthy, and back to creative projects, but can’t keep the pace of her pre-lyme days. She touched me a bit when she recalled telling a doctor, “I am in here somewhere.” That is exactly how it feels.

 

 

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You’re not crazy, Lyme is a real jerk

When NYU Hospital told me I had Lyme, the CDC website and a lot of other official statements certainly did not alert me to what a true shit show I was now starring in. Neither did my infectious disease specialist.

I am one of the lucky  ones. I have a name for what has ruined my entire life the past few years. I have a CDC positive diagnosis. After loads of treatment, I think I am as well as can be hoped for now? I think I am ready to be functional, kind of like a normal person.

Yet, even in the Lyme ridden North East, my treatment and recovery have been filled with a world of people who don’t understand what I am dealing with.

My heart breaks for every person who is now suffering like I did, but are still undiagnosed.

Many people get no sympathy or help from their workplace, or spouse, family or friends. It gets hard for these people to tell themselves every day, “I am not crazy something is really wrong.”

So I’m just saying, you are not crazy. Easy to say, easy to forget.

 

 

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Medications to Fight Infection

I have been on both herbal remedies and prescription antibiotics. Finally, after 3 years, I broke down and did IV antibiotics and supplements for 10 months.

I certainly don’t have the answers to what will make someone well. But I will say, the combination of herbals, antibiotics and supplements gave me results.

Only time will tell if my current progress will hold up. My last IV antibiotic was Thanksgiving 2016.

I will do a detailed history of my treatment when I have time. I know if you are struggling, you really need to know details. It’s a long dang list though.

From what I understand, I am in the relapse danger zone, but doing well, and even made it through some huge challenges.

I am still scared, but encouraged and hopeful.

 

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