Bloody Lymey

A Blog About Living with Lyme Disease

17 Day Diet Take Two: Day 10 – and Info about Leaky Gut Syndrome

I have not update my progress in a while. So here I am!

I have lost 12 lbs. Six pounds were in the first two days, so I’m trying not to think of timelines and feeling discouraged by the daily ounces I’ve been losing.

The other day at work, the elevator was broken. I work on the 5th floor. Miracle of miracles: I could do the stairs!!! Toward the end of the day, I had to back down some of the stairs because my knees were rebelling, but for the most part I was up to it. I probably did the 5 flights of stairs FOUR or FIVE times.

I mowed the lawn the other day, and if you’re a regular reader you may be aware that I have done this before. Well? This time it didn’t feel so much like work and I did not have to uncurl my hands afterward.

At the end of a day I sometimes feel very sleepy, but it is the kind of sleepy one feels after having worked and not the Lyme-caliber fatigue. My headaches are gone. My tongue is now PINK and not white (an indicator of internal candida). On occasion I have had a little jab of nerve pain. Another improvement is my menstrual cycle. It is less heavy and clotty [TMI? Sorry!] I have cramps again, which is bad news in its own right, but a spin of normalcy on anything I do is GOOD.

In six days I am scheduled to see the rheumatologist and I do not have much to report. My singular symptom – that’s worsening – is floaters. The computer screen looks like it’s pulsating and moving with “molecules” and squiggly lines. I don’t know if this is some sort of herx reaction? [PS. Forgive me if there are typos in here or little grammatical hiccups — I am relying on the red squiggly underlines to tip me off because it’s difficult to read lately ]

What I’m wondering is if I have a food sensitivity as well. I have read a lot of about Leaky Gut Syndrome, happening upon the condition by accident during my research. If you’re wondering what “leaky gut syndrome” is, it’s damage to the intestinal lining. How does this tie into Lyme Disease?

Some Leading Causes of Leaky Gut:
1. Lots of antibiotics
2. Lots of NSAID medications such as Naproxen or Ibuprofen
3. Caffeine

Lots of us lymies are “guilty” of that. Don’t we sometimes get carried away with the caffeine when we’re in a big bout of fatigue? Don’t we take pain medications for our joint pain and other malaise? Antibiotics go without saying. I, myself, lost count after 18 months (3 months here, 6 months there).

When the lining of the intestines are in good working order, they have little gaps in the cells that permit vitamins and nutrition to seep through into our blood stream. When they are damaged, the cellular gaps expand and other things can get through such as food particles and gut bacteria – both good and bad.

Symptoms are often confused with food allergies, MS, Rheumatoid Arthritis, and skin conditions.

Leaky Gut Symptoms:

1. Bloating
2. Gas & cramps
3. Abdominal pain
4. Joint pain
5. Neurological symptoms
6. Food sensitivities
7. Acne
8. Fatigue
9. Brain Fog
10. Constipation
11. Heartburn
12. Gum Disease
13. Depression
14. Autoimmune Deficiency
15. ADD
16. Dermatitis such as Eczema and Psoriasis
17. Headaches and migraines
18. Systemic Candida (nail fungus, etc.)
19. Colitis
20. Celiac Disease
21. Thyroid conditions
22. Crohn’s Disease
23. Arthritis

Here’s one article about it: [if link fails, try to copy and paste this: http://www.leakygutsymptoms.com/%5D

Notice that the symptoms increase in severity?

I have read many articles about it and the consensus seems to be:

1. The symptoms – and that they increase in severity
2. Treatment – Addresses the CAUSE of the intestinal permeability. Often it has to do with nutrition. This is like an elimination diet so that the intestines may heal. This is a good resource: [links sometimes fail me! If this doesn’t work, copy and paste: http://www.liverdoctor.com/liver-problems/leaky-gut ]
3. The medical community seems divided over the authenticity of the existence of Leaky Gut, so treatment usually falls on the patient or the Holistic / Natural Medicine community

I am mentioning this because if you are new to Lyme Disease and are on antibiotics then you may want to consider going on a cleansing diet to prevent this happening to you. If you take lots of antibiotics and eat lots of refined foods, sugars, yeast, wheat, et al, you are feeding the bacteria you are trying to kill and also making a happier home for yeast inside your gut. Make sure you consume plenty of probiotics, and try to consume ones with MANY different cultures not limiting yourself to the typical acidophilus.

What Made Me Happen Upon Leaky Gut?

Well? I was at work with a client the other day and my mouth became very dry. I could not get something to drink that very moment so I grabbed a couple of mints on my desk. The mints came from our Health Insurance company in a package with their logo so there was no list of ingredients and such. I suspected they may have sugar, but they’re the size of baby aspirin and I was THIRSTY. It brought me relief but I almost promptly became bloated. My stomach, by the end of the day, was rather distended. The mint was certainly the trigger.

I googled “mints and bloating” and came to find Sorbitol is a common ingredient that many are sensitive to and that it causes bloating. Here is an article if it interests you: And here’s a copy and paste option for you: http://www.foodintolerances.com.au/food-intolerances-sorbitol.aspx

Reading about it over and over, I came to find the term “leaky gut syndrome” attached. That led me on another tangent.

So here I am. Perhaps it is leaky gut. Perhaps it is not. But I am DEFINITELY doing better physically on this diet. Mentally too. Emotionally too. I highly recommend it!

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Meningitis ………..

Sometimes we Lymies get it. So what is it? It’s basically an inflammation of the membranes surrounding the brain and spinal chord. It is said to look like this:

Many bacterial infections cause meningitis – the bacteria gets into the blood stream and makes its way into the cerebrospinal fluid.

Of all the Meningitis, the one caused by Lyme seems to be the least likely to be fatal, and is often the least severe (the least severe …. that’s cold comfort when you have that headache and it feels like every prism of light is a shard of broken glass impaling your brain ….). It can be caused by viruses, too, and more rarely fungi (this is more likely to be a problem for the elderly or people with compromised immune systems such as found with HIV or people taking immunosuppressant drugs). Sometimes cancer may cause it as well as reactions to certain medications.

My jaw dropped when my specialist listed it among my symptoms/side-effects/troubles,etc. It’s a scary word, isn’t it? Meningitis. It sounds like something that will require surgery or a hospital stay … or perhaps a meeting with a lawyer to discuss the will. If you suspect you have it, definitely get treatment! Some symptoms include:

1. Fever
2. Stiff neck
3. Severe headache
4. Sensitivity to light
5. Vomiting
6. Nausea
7. Extreme sleepiness
8. Confusion
9. Seizure

Bacterial Meningitis is treated with antibiotics – and so is Lyme Disease. This may account for why people who contract Meningitis through having Lyme find it less “severe” and less “life-threatening.” (I put it in quotes because that seems to be the consensus in my research – not my idea because I’m not a medical professional and I know NOTHING but what I read).

Diagnosis is confirmed with either an MRI, CT Scan or a Spinal Tap. Often the Spinal Tap is how they confirm if there is any uncertainty; what they look for is an increase in white blood cells and a lower glucose level. This may be necessary, too, to determine a course of treatment (viral Meningitis can not be treated with antibiotics, obviously).

For me? They didn’t do this. My specialist saw that my symptoms were responding to antibiotics – which is what they would have used to treat me for Meningitis – so my “diagnosis” is not carved in stone with absolute certainty. But I will say – whatever has caused it – that was an indescribable headache. Simply epic. It had a cold, steely, twisting, impaling quality. I can’t even describe it. And the neck stiffness was incurable. Sometimes we sleep wrong, but moving around and time eases it. Nothing touched this. No over-the-counter meds, no exercises, no hot baths, no level of relaxation … it really was extraordinary.

Another reason that she thinks I have had Meningitis is that I grew up with ADD (of course I’m kind of OLD so they didn’t have a name for it …. just names like “unmotivated,” “lazy,” “day-dreamer,” “lack of focus ….” ) and since having Lyme my symptoms have dissipated. She thinks the swelling may have “altered” something.

My ADD is not entirely “gone,” I don’t think. I can still be rather disorganized, but nothing to the extent that I was before. Miraculously I work in Human Services now. There is NO way I could have listened to clients the way I can today. There is NO way I could have completed my paperwork so efficiently. There are not too many things I can say about Lyme Disease that are GOOD. But this is one! I do not miss the racing thoughts …. though I miss the insane creativity I once had.

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Son Shine in the Lyme Light?

My son. My son. My son.

I’ve always thanked God in heaven above that what ever happened to me, happened to ME and not my son. In the end of summer 2008, when I saw the specialist, she thought I had it for 2-3 years. My head sluggishly fired some fireworks with exclamation points about how GREAT it was that the tick bit ME and how many times I took him out in the woods hiking with me.

Throughout my lyme disease, there were things about being my son’s mother that made things more “challenging” for me. He was diagnosed as “Pervasive Developmental Delay Not Otherwise Specified.” In laymen’s terms, this is just over the line on the autistic spectrum.

This is met with some controversy in our family and even with his pediatrician; he started speaking at 7 months old. His first word was “kiss,” and he would hold his little pudgy fist out for me to kiss it (this demonstrated a working knowledge of the word; it wasn’t jibberish).

My son, who I’ll call “C”, can be VERY rigid. His social skills are rather weak – more with children. He gets obsessed with things (past obsessions included shoes and a song by Tina Turner). He is rigid in expecting his schedule and routine to go smoothly and has clearly doesn’t like it when anything gets him deterred from this everyday structure and his expectations.

But he was worse. There were tantrums. Always big for his age, he would fly off the handle and I was afraid he’d hurt himself or others. With my sore knees and my muscle fatigue, I would have to restrain a whirling ball of adrenalized, 45 lb. kid.

You can imagine how bad this sucked. You can imagine how bad it was to try and summon some mental fortitude to try and talk him off his ledge. One day I said I’m NOT having this anymore and I beat some of it out of him (not “beat” as in physically … I mean “beat” as in I unexpectedly changed our plans and MADE him adjust …. I turned on some tough love and let him know under no uncertain terms that the tantrums WILL stop NOW. I stopped playing Tina Turner’s CD except when I felt like it….. there were changes. And it was exhausting. But it worked – more or less).

It’s hard to summon the energy to make him clean up after himself or to stand there and supervise him while he does the dishes. It’s easier to do them myself. It’s easier to let his crayons sit on the floor. It’s easier to dose on the couch and let him poke around and leave his toys out. At night when he’s in bed and I look around, it’s impossible to pick everything up – whether it’s the fatigue or the knees.

But, let’s go back to his PDD-NOS. I found an online support group for lyme. I was clicking on links and reading. There wasn’t anything new, really. One way I deal with things is to read, read, READ about it. And in my readings, I had seen most of what they had to offer. The words changed, the authors were different, the writing styles distinct, but the message was clear: lyme disease is the great imitator, hard to diagnose, no one knows how to treat it, and blah-de–blah.

Then? There were links about children. There were links titled “autism and lyme.” Spectrum disorders are neurological. Lyme disease went for my nervous system. But there’s more …. rigid thinking, a touch of OCD, attention issues (which has come up on my son’s teachers’ radars as well as mine), and more.

I dimly remembered C talking about his knees. In fact, he did it today. I’ve dismissed this over and over and over. I remember when I was younger, the backs of my knees hurt when I walked a lot or roller skated. I thought this was similar. Today he asked his dad if they could leave the park because his legs hurt. When he got home, I asked where they hurt and he pointed to his knees.

He can be impossible to wake up – is this lyme-fatigue or is it how he’s wired?

I’ve decided to get him tested.

Maybe he WAS bitten when we were out and about. Maybe I had this when I was pregnant. I mean, no one knows for sure how long I’ve had it.

I have fears though. I had horrible symptoms and my tests were negative; if it weren’t for my having a smart doctor who saw I responded to the treatment and a third test out of town in a bigger city, I’d probably still be ignorant of my status. What if his test says he’s negative but he’s not? What if it says he’s positive and he spends years struggling as I am? What if it says he’s positive, they treat him and he’s STILL rigid and suffering from this OCD and socially isolated at school?

What if, what if, what if?

What if I never read that article?

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ADD & Lyme Disease …

One unlikely side effect of lyme disease was that the 23-ring circus that is usually going on in my ADD-riddled mind had quieted down considerably.

I was more focused. I could hear what people were saying and kind of retain it. I wasn’t as distracted. I realized it had been some time since I was too acutely aware of someone chewing gum in the next room or some other peculiar thing that I would obsess over. I didn’t get as overstimulated in noisy situations. My racing thoughts didn’t keep me awake all hours of the night.

However the evils that I had misplaced while in the throes of lyme also took with them the gifts. My quick wit was not so quick. My creativity was halved. I had little urge to write – I could write coherent sentences, true, but the creativity was dulled. I felt very, uber, totally, completely and thoroughly uninspired.

I mentioned it to the specialist and she mentioned that I had meningitis and that the brain swelling may have effected this. She wasn’t terribly interested in it – especially since it seemed to “correct” something that had once been pesky. But I sure was interested.

This was also a nagging indicator that I hadn’t been fully “restored” even when I had that great stretch of health spanning many months.

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