Bloody Lymey

A Blog About Living with Lyme Disease

“Is the Vitamin C & Salt Protocol Safe?”

I am able to see search engine terms that bring people to this blog, and the title of this blog is among the most frequent in current trends.

I’m not a doctor, so my word is not the law.   The best and simplest answer is “ask your doctor.”  That sucks, doesn’t it?  You came here for a solid answer and now you’re being directed to your doctor who may or may not believe that you have Lyme Disease, or may believe that you “had it” and the rest of this stuff is in your head.  How dare I turn you back to the unreliable medical community who gives you the run around.

Well?  Let me tell you whyyyyyy.

If your kidneys aren’t perfect then lots of salt is NOT something you ought to be ingesting.  Vitamin C probably isn’t a good idea either, in larger quantities especially.  If you have high blood pressure then increasing your sodium intake in this manner is probably unwise.

See?  There are many compelling reasons why it may not be a good idea.

I’ll tell you what.  I don’t have any of those issues.  I did ask my doctor about it and frankly?  She thought it was silly.  But she insisted I stick with Himalayan salt (as advised by pretty much anyone) and advised me to be careful of heavy metal content.   She reminded me to drink lots of water as well.

So before you go reading things to see if it’s SAFE.  Please ask your doctor.  No one out here in cyberspace can see you and none of us knows your medical history — and frankly, many of us are laypeople who wouldn’t know how to answer your question even if we knew your entire history.  Ask your doctor.  If they give you crap, just fold your arms and say “Humor me.”

Also ask about other supplements you may be taking to make sure there’s no interaction.  Many sites recommend taking Natokinasse for a few days prior to clean your bloodstream; it’s a blood-thinner.  If you are going to take supplements in conjunction with the protocol then ask about those, too.  Nato-zymes may be a bad idea if you’re already on Coumadin or something similar.

If they say it’s okay then PLEASE take a tiny bit at a time and slowly increase.  I herxed pretty badly and hear that I’m not unique.

(***Note:  I’m not a good resource on whether or not it “works.”  I herxed BAD and stopped.  I could not function.  Could not!  So I didn’t see it through to the end or through any recommended length of time.  If you try it then read read read.  Make sure you drink tons of water and eat a detox diet. ****)

 

 

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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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Successful Treatments / Lifestyle Changes So Far

I was thinking about things that have helped me with chronic lyme disease so far and thought I should make a list with a quick summary. It’s important to note that I don’t think any of these things are a “cure” but they are things that make me feel better for longer stretches:

1. Diet – this was the one thing pushed down my throat the most and the one thing I fought tooth and nail to not do. I was happy slugging diet soda all day in stead of water. I was content eating more breads and carbs than vegetables and fruit. I rarely ate meat and was alright with that.

One day my gut seemed very big to me. It bugged the hell out of me. I spent the next few days reflecting on what changes I was willing to make. Here I am on the 17-day diet. It includes vegetables that are renowned for their anti-inflammatory properties. I have more energy. My gut is getting smaller.

2. Reiki – I was astounded by how well this worked. I was astounded by the lasting results. I felt wonderful and calm for days on end. I have only used one practitioner (a friend of mine) so I don’t know how to find a good one. I also firmly believe the secret is to have an open mind and not go there with arms folded and a scowl, expecting it to not work.

3. Vitamin B – this is a good antidote to fatigue if lyme disease has weakened your thyroid and it’s supposed to offer support for the nervous system. Lyme disease seems to have an affinity for my nervous system – from my sometimes buzzing legs to the nerve pain to the vertigo to the numbness in my hands and feet.

4. Antibiotics – Indeed, the treatment didn’t cure me. I am not lyme free. However, I think about where I was before treatment and where I was after, and it made SUCH a difference. If you are prescribed antibiotics, follow the directions verbatim and don’t stop until your doctor agrees to. Take probiotics and eat yogurt to maintain your digestive system’s health and to prevent candida overgrowth. Drink lots of water to help flush out the neurotoxins the bacteria emit when they die off (herx reaction). Get lots of rest.

4. Salt Protocol – I will say that I first started it and hadn’t read the directions completely and didn’t take so seriously what I had read. I herxed worse on that than I did on antibiotics. I am positive there is something to this. I am currently using himalayan salt when I cook instead of just swallowing a nasty spoonful. I’m drinking water. I do feel the motion inside me that the article talks about. (Google Lyme Photos for more information. Some of it sounds extreme and perhaps it is. But it’s worth trying. I recommend trying it to the letter and not trying to adapt the protocol to what you’d prefer).

5. Mental Fitness – and this may be the most important of all. I can’t say that I accept this disease every second of every day. But my sponsor in AA has helped me to see seemingly unlikely gifts in this situation. He has reminded me to just get through today. If I start thinking about how long it’s been or how long it’s going to be, then I could drive myself nuts. I can’t think that this is “the rest of my life” or “it will get worse”. I have to enjoy today. I have to talk and get support. There are plenty of well-adjusted people with chronic illnesses and chronic pain. They’re great to reach out to, even if they don’t have lyme disease. Unfortunately, I don’t always do that.

6. Low Dose Naltrexone – this has helped me tremendously. It is a medication intended to support the immune system and suppress the auto-immune response to lyme disease. I felt so much better initially that I cried. It’s used to treat MS and a slew of auto-immune disorders. I forgot what a help it was until there was a lapse in my insurance and I was unemployed and had gone without it for a while. When I started taking it again, I noticed the difference. It is tied in to dopamine-support.

7. Zoloft – I’m not depressed, but my primary doctor thought it would help the muscle fatige and exhaustion. It did. I feel more alive. They think it’s the serotonin-support.

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17-Day Diet & Lyme – Day 16

It’s been quite a week. Some ups and downs. I will say it rained a LOT yesterday and I didn’t KNOW. I was at work and didn’t look out the window and was surprised to find it raining when I left work. My knees didn’t hurt one iota!

I’m not craving carbs so much anymore. This diet is getting easier for sure.

I had a bad couple of days. I was tired, foggy-headed and suffering from the same caliber of vertigo that taunted me at the onset of lyme. And I had the nerve to attempt grocery shopping. I could NOT find the spaghetti sauce my son loves: Newman’s Own Sockarooni. I couldn’t read the labels and it seemed like every product on the shelves was on its own rocking chair and rocking out of synchronicity.

The worst: one evening I was home and doing stuff in the kitchen. With zero warning, I started to wet my pants. And I couldn’t stop. I didn’t feel it coming on. Didn’t feel like I had to “go.” There was no urgency. I’ve been scared to leave the house. What if it happens in public?

I could accept the pain and the limitations I’ve been presented with and the entire notion that I can’t control my body. THIS however is the ultimate in being out of control and it bothers me in ways I can’t begin to describe.

I talked to others with chronic lyme disease and have found they have endured the same humiliating situation themselves.

The vertigo has subsided as mysteriously as it arrived.

Because I’m so excited about working again, my head races at night and I’m getting less sleep. The departure of the peculiar symptoms seemed to coincide with the night that I fell asleep early. I’m also loosely doing the salt protocol and don’t know if there’s a connection. I haven’t had that vertigo feeling for nearly 4 years.

As for the diet …. I’m continuing to lose weight. I think it’s got to be 7 lbs or so by now. I’m way more energetic. Life is good.

I’m cooking with himalayan salt and having a bit of the stomach upset they promised in the salt protocol. Aside from that and my mysterious 2 days of symptoms, I don’t appear to be experiencing much herx.

Hopefully this continues. On top of working, I’m going to go for my internship this semester. Pretty ballsy of me!

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17 Day Diet & Lyme Disease

Antibiotics make me bloated and the effects seem to last for months. Honestly, I’m astounded by how long it’s lasted this time. A friend of mine (who doesn’t have lyme) boasted great results after trying this new 17-day diet.

Its premise is eating certain things for 17 days and then switching it up. The author admits that the first bit of weight to come off is water. I need that!

In addition, when I’m feeling fatigued with lyme – I have atrocious carb cravings. So! I’m trying to break this cycle.

I also crave diet soda. I’m trying to break this cycle, too.

Antibiotics mess with the digestive system (killing good bacteria as well as bad bacteria) and even though I’ve been off of them since November, I can’t seem to feel “regular.” I’m wondering if I have IBS. Another theory I have (and it can’t be proven medically) is a Candida overgrowth. This can happen in the intestines.

Starving candida of carbs is a good remedy, so if this is a problem for me then this diet might help. If this is a problem indeed then there is a Herx Reaction with that, too! I did a lot of reading and it looks like it sucks.

Yet another reason for me to give this a whirl is that my specialist has been after me to try a low-glycerine diet …. this is fairly low glycerine.

Annnnnnd another reason is that the book has been written by a doctor and he talks about the benefits to the thyroid (proteins are helpful and to be honest, I’ve never been much of a meat eater…. and some of the foods are rich in B vitamins that help support thyroid function AND the nervous system). Lyme disease caused my hypothyroidism, so this ties in.

Another reason I want to do this is because with the salt protocol, they recommend more vegetables. The cleansing effect of the vegetables and drinking more water is said to mimimize the herx reaction. This diet is keeping me in “line.” It’s giving me structure. Left to my own devices, I’ll have more veggies “tomorrow.” And left to my own devices, I’ll drink more water “tomorrow.”

So far I feel strange. I’m urinating tons – this is good. I feel a bit headachey and lethargic but not in the lyme way. It’s more of a carb and caffeine-deprived way. My heart seems to beat a little faster – not in a palpitations/scary kind of way, but in a way that makes me feel more alive.

Coffee is permissible – black and can be sweetened with Truvia. (Truvia is a “natural” sweetener, made from rebiana, “the best tasting part of the stevia leaf” along with Erythritol, a natural sweetener found in fruits like grapes and pears. Soooo …. it’s not a chemical created in a lab. It’s all natural and it’s not sugar. ) Frankly, in my black coffee it’s not too bad. It’s not fantastic, but it’s not insufferable.

I’m not going to give away the book for free, but I’ll say that for the first cycle I am to:

1. Eat lean proteins such as chicken breast, eggs (no more than 2/day), and turkey. Some fish are okay, but I don’t like fish.
2. Eat two low-sugar fruits/day. The book furnishes you with a list.
3. Drink 8 glasses of water/day.
4. Unlimited servings of “cleansing vegetables” (listed in the book).
5. 2 servings of probiotics – sugarless yogurt, etc. or supplements.
6. Green tea (I despise green tea but found some by Lipton that have fruit flavors and they’re rather palatable).

Coffee and tea are allowed – no sugar and no milk.

There is such a thing as “probiotic” milk that is allowed. I haven’t seen it anywhere yet, but it’s just as well. I don’t want to dump too much money into this until I’m sure I’ll stick with it.

I have been unemployed since the middle of June and start my new job tomorrow. Tomorrow is mostly paper work and then the real work starts Tuesday. If I’m not functioning up to snuff (too headachey and tired), then I might stop this. That would suck since I’m fired up and determined to see it through. But …. I have to be on my toes for a new job.

My first intent was to “lose a few pounds.” But after reading the book, I see how this diet may benefit my lyme symptoms and the post treatment stress I’ve been having.

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Take it with a Grain of Salt

I’ve obviously had some ups and downs with lyme lately. It’s noticeable. People ask how’s it going ….

I tell some (that I trust) about the salt protocol. Sometimes they smile politely and nod. Sometimes they look like they are upset, like they are wondering too loudly what kind of hocus pocus is this? Sometimes they look distracted, like they don’t want to hear about it. Sometimes they fold their arms and squint. I haven’t had anyone look like they’re open-minded about this – just one. I’ll get to her later.

(And don’t get me wrong – the people who are closest to me and love me support anything I try, even if it’s to rule it out. God Bless them. I’m a lucky lady.)

I find myself shrugging and saying, “well, I’ve tried everything else. It’s just vitamin c and some fancy salt … can’t kill me.”

Then I quickly add that Dr. C. said it’s okay as long as the salt doesn’t contain a lot of heavy metals.

I’ve been doing this for a mere 12 days so far. I’m observing the recommended gradual increases. I’m getting bloated. My pants are allllll tight. I constantly feel kind of full (and I’m drinking scads of water like they advise! And I’m eating wayyyy more vegetables).

I do have the promised diarrhea – which is a nice change of pace from being constipated. And you know? I do feel itchy under my skin. Like little tiny things are moving around. It’s bizarre. I do feel a little charge of energy after taking the dosage and do believe it is supporting my adrenals like promised. If this is all I get from this? That’s okay.

I can’t figure out why it sounds so “OK” to take thousands of milligrams of antibiotics each day for months on end only to have “some” results. Why is conventional medicine so more appealing when there seem to be so many logical reasons to try the salt therapy?

One friend – and she’s adorably quirky – nodded with conviction when I told her about my plan. She shrugged and said, “Well? On slave ships, they used to throw salt on the slaves after whipping them. Partly to hurt them and partly to prevent infection.” Made sense to her. She totally wholeheartedly accepted it. I didn’t have to explain. She took the liberty of doing that for me.

I worked with her for a couple of years. She rarely contracts any illnesses that are going around – no matter how bad and no matter how contagious. On her desk: pens, stapler, staple remover, two shakers of salt …. she puts salt on virtually everything. She even salts salty things such as bacon.

So here I am. Explaining myself. Perhaps to you?

I didn’t buy this through some amazing TV offer. I am not trying some farfetched and ridiculous thing that I subscribed to on the internet and that I’ll have to unsubscribe to when the ante goes up and my credit card is charged some ghastly monthly charge. It’s not snake oil – though I would have tried that if someone pedaled it with enough sales prowess.

It’s just salt. And vitamin C.

I don’t dare tell anyone about the lymephotos website and how it alleges that there may be worms in me, too. I don’t dare tell anyone that they may try to escape. I’m glad I didn’t read that until I started this, until I subscribed to the fact that this might possibly work. It would have sounded too ridiculous.

I guess I’m not better than they are.

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Lyme: No Sweat?

They say you don’t know what you got ’til it’s gone. Sometimes you don’t know what you’ve got ’til it’s gone and it returns.

I was sweating today. I was dimly aware during an epsom salt bath that I was sweating for the first time in eons. Today I was sweating. It was hot, but it’s been hotter in recent memory.

I didn’t realize I haven’t been sweating. I haven’t felt hot to the touch or like I needed to sweat. Nonetheless, it’s a bit disconcerting.

Never was I a very sweaty person. You wouldn’t have to wring out my shirt after a workout. However, I thought I was always normal. I used to work in a restaurant and a trip into the kitchen would make my head itchy with sweat, my shirt damp, etc. I’d go home feeling “nasty” and in need of a shower.

Fast-forward a few years …. hot and humid weather doesn’t get a rise out of me.

I googled it today and don’t know what to make of it. Is it my bum thyroid? Is it my adrenals? Is it my nervous system? Is it some combination thereof?

Googling “lyme” and “sweating” makes me see that I should be sweating excessively. I don’t know if it’s tied into that.

I thought more about the epsom salts, that I used partly for muscle fatigue and partly for a recommended “detox” (it’s reputed to extract toxins from the pores), and saw that it should make people sweat more when they take a tubby.

I don’t know what’s suddenly making me sweat a bit more normally (I will say I was sweating fairly lightly). Maybe it’s the salt protocol I’m on? Maybe because I’m drinking more water? Maybe something’s kicked in?

I have more energy lately. I don’t feel perfect, but I feel more functional. This is a good thing.

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I Did It Myyyyyy Wayyyyy…

My first bout with the salt protocol didn’t go so well. I did it MY way.

I don’t mind drinking water, per se … but I’d much prefer a nice cold diet pepsi. Or a big dark roast ice coffee. Or a sprite zero.

The plan specifically says it is imperative to drink lots of water. The saying goes, “The solution to pollution is dilution.” Water is essential to dillute the neurotoxins the little buggers release when they die.

It is also necessary so that the salt travels its course through the body, flowing into all the little varmints’ hiding places. And they have many.

And I did drink some water. Not nearly enough, though. In fact, to take away my excuses, I’ve invested in a Brita water purification system. Now I can’t say “I’m out of spring water.”

The plan also insists on consuming a diet of 85% veggies/day. I like veggies, but they can be costly. I couldn’t see myself eating that many veggies. Besides …. I didn’t want my stomach to get upset. Well? That’s going to have to change.

It also maintains that some kind of detox is necessary. There’s a recommended supplement that is mostly soy. I can’t do this. One weekend a few years back, I had horrific hive outbreaks. One night then the next. Both nights resulted in a trip to the ER for a big horse pill. The common denominator was soy. I can’t chance it. I don’t have health insurance right now either due to becoming unexpectedly unemployed.

I’m following the plan with greater accuracy.

They also state that lyme patients tend to have compromised adrenals and that salt is a good remedy for this. They also say that following a dose of salt, one might feel a little surge in energy, etc. I must say I am benefitting from this. I’ve long thought my adrenals were compromised.

Lyme disease effects the endocrine system quite badly sometimes. In fact, it caused me to have a bum thryoid. My body attacks my thyroid hormones since it is shaped similarly to the bacteria that causes lyme. This may be why it’s so hard for my body to defeat lyme on its own. It keeps mistaking parts of me for the bug and vice versa.

I’m hoping my low dose naltrexone will help support my immune system, too.

So? I’ll do it the right way. Not my way. And with this increase in water, I have the itchy feeling the plan promises. It’s reputedly the bugs moving around inside, trying to flee the agonizing salt. Moooo-wah-ha-ha-haaaaa.

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I’ve Got SOME Nerve ….

And that nerve is jolting me into agony. Nerve pain is something I haven’t had too much of (thankfully) in three years. I’ve had jolts here and there with an occasional jab.

Well …. let me back up. I’ve had it in my arms and legs periodically. It hurts like a bitch, but I can handle it for some reason. Therefore, I take it for granted. I don’t dwell on it. It’s actually getting to be forgettable.

When it’s in the pressure points behind my ears, I have visions. It hurts so bad that I know I would faint from it …. except that it’s a stabbing and intermittent pain. Honestly, two seconds more and I would faint. I see black dots when it comes and I forget myself. It hurts so badly that it makes my heart skip a beat. I breathe fast or I stop breathing – one extreme or the other.

If it hurt a little less, I’d probably yell. It seems to hurt so much that it’s almost fascinating. It hurts so much that it’s strangely quieting. I stare, fascinated by the pain, clutching my neck, my middle finger or index finger digging into the depression behind my ear where it stems from.

It feels like being stabbed with a hot poker with an electrical charge and it makes the muscle in the side of my throat tense and then that hurts and feels tender for some time after. Sometimes it travels into the side of my jaw.

If I could pick and choose, I’d choose this over muscle weakness and fatigue. I can keep going. It’s hard not to let it show when it happens and whoever is with me invariably stops and looks alarmed and says, “What’s wrong?”

I don’t like this. I feel like an old lady, bellyaching about my health. I guess you can’t possibly realize how important your health is until something’s wrong with it.

I remember old people telling me to be grateful for my health and I’d smile politely and nod like a preprogrammed robot. It was in my actions to agree, but not in my heart. I had no idea. How very right they were.

Years ago, a doctor suggested Lyrica (?) for the nerve pain. I passed on it because of the potential for side effects …. I think they involved fatigue, things that would exasperate my other lyme symptoms (and the ones that bother me most).

I can separate my spirit, my mood, from the pain. No matter how bad it is. But the fatigue …. my very soul gets fatigued when my body does. It’s hard to feel peppy and happy when I’m swathed in sleepiness. When I’m exhausted I am apt to confuse apathy with contentment. And that’s the best I can do.

Maybe it’s the salt. I read that when you start the salt protocol, that the body may go a bit haywire. Maybe it’s the onset of herx? Maybe it’s incidental and this would be happening anyway? I’m having a bit of a flare-up anyway.

I’m going to stick with the salt protocol this time. I’m going to try. I’m fearing migraines. I can’t begin to tell you how sodium free I have been for my entire life (even before doctors and the FDA and the powers-that-be encouraged it). I just have an aversion to salt. I am not into the taste. I don’t like the way it feels. My body seems to rebel against it.

But I’m going to try to stick with this. I have to get rid of these bugs in me. I have to have my body back. I am not even 40 yet and I feel like I’m 100 on some days. Not today. Today I feel like a “pushing 40” with nerve pain.

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Salt & C – Trying it Again …

I started the salt and vitamin c protocol a couple of weeks ago and had an immediate and full-throttle herx reaction. I had the promised diarrhea, as well.

Because I was sick when I tried it and because I found out you’re supposed to start out gradually, I took a break.

I started again four days ago. I had a bit of diarrhea but no herx. I felt like this was okay.

Unfortunately, I stepped on one of my son’s teensy weensy toy pieces and it made my foot bleed. I cleaned it and thought no more of it.

The site of impact hurts and has gotten hard. There is a ballooning circle of taut foot skin around it and a small black circle in the center.

The long and the short: yesterday, I had edema in that foot (and to a much lesser extent, the other foot). I NEVER have foot swelling. Never ever. Just when I was pregnant. The past two days were terribly hot, so I don’t know if it’s that, the salt or a potential infection.

Since I am currently uninsured, I’m popping some left over ceftin and hoping this passes. Also – since I’m uninsured, I can’t have a doctor look at the foot swelling and tell me if it’s simply pesky or if it’s a larger concern.

Needless to stay, this salt protocol is happening in fits and starts.

I didn’t have any swelling today and the temperature has dropped. I’m going to have another dose tonight before bed. 🙂

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