(pt6) Diet and Lyme/Co-infections

So we should probably talk about diet. I never really watched what I ate until I entered my 30’s. Even still, I watched what I ate, but didn’t really keep with eating healthy. I’m Italian, I love pasta and I love bread. Sweets don’t really tempt me that much, but if you put a plate of pasta or a fresh loaf of bread in front of me, I’m taken.

By the time I saw my Lyme Literate doctor, I would have gone out in a field and eaten cow poo if he said that would help heal me. I was THAT desperate to heal. Instead, he urged me to refrain from all carbs, yeasts and processed foods. Well, for me, that didn’t leave much to eat. With three meds that needed food with them, other meds/supplements that needed two hours before or after meals, it was really difficult to juggle times and foods. But those first four months I managed it. And I found myself reaping the amazing benefits of sticking with what I call the “Lyme Diet”.

The Lyme Diet consists basically of eating fresh vegetables (with the exception of corn because it turns into sugar as you digest it), frozen vegetables and canned vegetables, chicken, limited red meat (because red meat can cause inflammation. And some forms of Lyme can cause allergic reactions to red meat), fresh fish, apples and oranges only for fruit (because they don’t turn to sugar in your system like other fruits do), limited dairy (milk, cheese), … you get the point. Anything that has yeast in it, including alcohol, was out. Anything that had carbs or turned into carbs after consumption was out. Any processed food was out. My husband was great at pointing out the label on anything I picked up while grocery shopping. I stuck with it very well, and didn’t feel deprived at all those first few months. I lost over 20 pounds, I lost all the inflammation in my body, and I lost all the pain and stiffness I had for over 15 years. It was like a miracle. I.FELT.GREAT!!!!

The reason sticking to this “diet” is so important when treating Lyme/Co-infection is that consuming anything that is sugar or turns to sugar in your system, is like miracle-gro to the bacteria the antibiotics are trying to kill off. So if you’re on antibiotics for Lyme (or really for any bacterial illness) if you also consume carbs you’ll defeat the purpose of the antibiotics and create a thriving environment for the bacteria to survive. The carbs, as well as the yeast you consume (including alcohol because yeast is in alcoholic drinks) creates candida and thrush when taking antibiotics.

My Lyme doctor explained all that to me, and said this diet would be for life, I understood it, I abided by it for three months straight. I saw the success, I felt the success, and yet, little by little, I gave in. First, a tablespoon of my sisters macaroni salad, then a single piece of bread with some lunch meat, and finally to some candy sitting in a dish. It wasn’t a lot, nothing like I would have eaten prior to Lyme/co-infection Disease, but enough to make a difference in my success in treatment.

It was explained to me that the spirochetes of Lyme/Co-infections burrow deep into the tissue and though the supplements can draw a lot of them out, and antibiotic kill most of them off, there are always some remaining that the antibiotics can’t reach to kill. So by refraining from the carbs and yeasts, those remaining bacterial spirochetes go into remission. Straying from the diet can bring them back to life, therefore awakening “the giant” from slumber and having it return full force or worse. That straying can also create the greatly feared “super-bug” which is immune from antibiotics.

SO ~ At this point, I really need to get back to fully behaving. I did have a relapse because I strayed from the diet too many times.

To know to do right, and to not do it, …. Stupid!! That is all.

Thanks for stopping by and reading me today. I hope you have a wonderful day, enjoy the surroundings.

(pt5) Digestive Help and Other Must Do’s

People ask me all the time about what I do for digestive health seeing as I’ve been on various antibiotics for a year. This is why I love my Lyme Literate Doctor. He treated my entire being, not just a germ. If you scroll down to pt2 post you will find a picture of everything I started taking once I was diagnosed with Lyme Disease, Babesiosis, Ehrlichiosis, and Bartonella Henselae. Included in that treatment were things to help keep my digestive health in tact. I had been making my own Kombucha Tea prior to diagnosis of Tick Diseases because I was diagnosed with Ulcerative Colitis and possible Crohn’s. A friend taught be about Kefir which looks like this in the store:

17077102322

I used Kefir following a few ER visits with UC/Crohn’s attacks and it was the ONLY thing that healed my gut. I started out using just a half a cup because when you begin using a probiotic, you get gassy and you have some abdominal discomfort if you go all gungho right off the bat. After a week I increased to a full cup. For about a month, that was all I could keep down. And I’ve never had any intestinal issues since, unless I fail to use either a pill form Probiotic, the Kombucha Tea (which I no longer make myself) or this Kefir.

The reason you want to use a GOOD probiotic, when you are taking antibiotics for ANY length of time, is because you’re killing off all the bad bacteria in your system, which would include your gut. The problem is, with killing off bad bacteria you also kill off BOTH the bad AND good bacteria in your gut. So any time you go on antibiotics you should always take a good probiotic. I strongly urge a probiotic no matter what because it’s just good to get and keep your digestive system healthy. So, get ahead of the game and keep your gut healthy with a probiotic and steer clear of needing to run to the potty in the middle of a conversation, meal, drive, or shopping trip.

Here’s some of the ones I take beside’s the Kefir above. You can find these at Sam’s Club in bulk, Walmart’s vegetable department, Wegman’s Whole Food/Natural Food/Gluten Free department and any health food store. In fact, Walmart also sells Kefir in the yogurt department. I go with the plain, unsweetened because if you add sugar to it, you’re just canceling out the benefits of the product. I use the Kefir in a smoothy with FRESH fruit, veggies, Flax, ….. anything I want really. But I never add sugar to anything. If I want to sweeten anything, I add organic Stevia drops.

Here is the Kombucha I use (there are others but you need to read the ingredients and make sure you’re getting what you need)

maxresdefault-2

Stevia is a natural sweetener. I also grow the plant and use the leaves in my home made Iced Tea for sweetening. So the liquid and powder forms are simply extracted from the plant itself. And it’s approved by the Lyme Doctor’s. The ONLY reason I use Stevia is to sweeten things. And I use it sparingly. There are a lot of claims about Stevia so I would like to add this quote from someone responding to claims that Stevia CURES Lyme Disease: “Please don’t fall for this. The reason why it does in a test tube is because it’s not having to be absorbed in any intestines. Therefore stevia extract wouldn’t be expected to provide any significant systemic antimicrobial activity against Borrelia or any other microbes associated with Lyme disease. The only way it might work is if it was injected IV. But this would be a really bad idea, because humans (and other mammals) do not have enzymes to break down stevia compounds. The compounds would build up in tissues with disastrous results. Btw, you can’t believe everything in these articles. Unfortunately many are misleading. Because lyme isn’t only a bacterial spirochete. It’s also a parasitic one. Lyme changes every four weeks when you’re not on treatment. Even then treatment doesn’t always help, due to how outdated it is. There are over 300 different types of lyme and Co infections. Many have up to three or more different Co infections. There many types of bands of lyme, but the Western Blot tests up to about eight only as well as the others do to. Which is why it’s easy to get a negative reading. Lyme is way easy to misdiagnose. Did you know that 9/10 cases of Alzheimer’s, Parkinson’s, and v Dementia patients have tested positive for chronic lyme. There’s is so much that needs to be in the light about this disease. But, sadly doctors still are unsure about this disease or can come together to believe that it’s real and can be deadly.”

DSC07501

One thing about the Kefir and Kombucha. Yes there are carbs in it. Yes, it is made with organic sugar or brown sugar. But as it ferments, the sugars are transformed into the scoby which is what creates the healthy bacteria your gut needs to function properly. So even though there are “carbs” listed on the labels, these are good carbs and not carbs that will help keep your Lyme bacteria (or affect other health issues related to carb consumption) alive and thriving. There is also trace alcohol in the Kombucha but it’s not going to make you drunk, nor make you fall off the wagon if you are a recovering alcoholic.

The Kombucha Tea and these products below are also great for detoxing your system. Another very important role in flushing out the dead bacteria, etc from the body. I always laughed at people who talked about these things. And here I am not only doing these things myself, I’m advocating for others to do it too. Go figure!

Activated Charcoal capsules bind with the toxins in your system and carry them out through your “elimination processes”. The Milk Thistle drops, Teasel drops, Silver Shield, and chlorophyl all act as dexoting agents and also help to build up organs, tissues and muscles in the process. I was VERY apprehensive using these things, but I can’t tell you how much they have helped me be able to funciton again.

NWY-45171-1

AS ALWAYS, TALK WITH YOUR LYME LITERATE DOCTOR BEFORE ADDING OR TAKING AWAY FROM WHAT THEY’VE RECOMMENDED

Hey!! Have a great day! And thanks for stopping to read.

(pt4) Most Helpful Links

There’s really nothing but my personal experience that I can share with others. I’m not an expert on Lyme/Co-infections. I only know how my life was affected by this. SO I hope you will take time to watch the link below and that you’ll find the expert advice you may need to get better if you’re suffering or someone you know it.

(pt 3) Pictures

Because people ask me all the time,  here are pictures of rashes and swellings that I had. They were non typical of what CDC expectations publishes. Another reason it’s important to seek a Lyme Literate doctor when you suspect Lyme Disease.

My Primary Care Doctor thought this was a bruise. My Lyme Literate Doctor explained it as my bullseye rash. At least twice I tested positive for Lyme but due to my regular doctor and Rheumatologist going by CDC protocol, they deemed me negative for Lyme Disease for at least 8 years or more. All the other rashes and swelling my “regular” doctors either couldn’t explain or said they were just allergic reaction rashes. Some even said the circular ones were ringworm but recanted that when I told them the rash was only there for a few seconds to a few minutes and then disappeared and appeared elsewhere later on or days later. My Lyme Literate doctor explained what each rash was, and which tick borne disease caused which rash.

IMG_2597

I never got ON THE JOINT swellings, but I sure got swellings nearby. This is my left ankle next to the joint.

IMG_1551

Swelling just above the ankle

IMG_3306

This circular rash appeared on my torso and was only there long enough to take the picture. Then it disappeared. No itching, I just happened to notice it.

IMG_1234

Kind of hard to see, but the red dots are surrounded by a red rash

IMG_2060

The rash below is on my forearm. These would come suddenly and frequently with intense prickly feelings and itch. They would disappear in minutes and show up elsewhere randomly.

IMG_1240

Other rashes in various places ~ arms, legs, side, torso, face

IMG_1861

IMG_1238

 

 

IMG_2687

IMG_2608

Lyme cyst on my finger like the one on my toe and those under my skin on my outer thighs.

Toe's toes 017

Bartonella on my lower legs.

IMG_5410

Possible nymph attached to my thigh.  I had to pry/dig that thing out with tweezers.

IMG_5408

Basically, I would say to the onlookers, if you have these bizarre rashes and swellings that come and go randomly, and appear here or there without reason, Please see the doctor. And if they can’t give you concrete answers or treatments don’t work, GET TO A LYME LITERATE DOCTOR. See if you have Lyme/Co-infections.

Again, thanks for taking the time to read. Have a great day!!

(pt. 2) After Lyme Diagnosis

Once I was diagnosed with Lyme Disease, Babesiosis, Ehrlichiosis, and Bartonella Henselae I realized I knew nothing about any of these things. Even though the doctor explained it all, my memory retention was next to nothing at that time. I was glad my husband came with me to the appointment. Always take someone along to doctor appointments if you can. It’s good to have another set of ears to hear what you might have missed or remember what you are unable to remember.

The treatment plan for these diseases is rather extensive. Though most NON-Literate physicians go by CDC protocol, it is never enough to properly treat Lyme Disease, especially if there are co-infections involved or if you’ve had it in your system a while. I can remember back to 1980 what I was horribly ill. There was no other diagnosis other than that I had a virus, but what virus it was, there’s no way of knowing. I never fully recovered from that time and though I had many years where I felt pretty good and functioned in life very well, there was this lingering inability to exercise and a fatigue that ebbed and flowed. So who knows how long my body was fighting infection. I do know that I won’t fully recover full hearing, my heart will never be the same, my hearing suffered as well as my eyes and thyroid. I have better memory after almost a year of treatment, but it’s still not retaining like it used to.

So when you begin treatment for Lyme/Co-infections a good Lyme Doctor will explain about Herxing. The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms. I’d like to add to that list, throwing up. Because I did a LOT of throwing up the first month and a half. As sick as I was prior to treatment, it didn’t at all compare with how horrible I felt when I first started treatment. So I was glad the doctor explained this to me or I would have thrown the whole treatment plan right out the window.

Oddly enough, as sick as I got from the herx’s, I could actually feel which part of my body, organs, etc were being “healed”. And at one point while visiting with my mother, she told me it was nice to see me so active and able to get up from the chair without pain. I hadn’t noticed that until she mentioned it. But I didn’t have any pain at all. So I knew that paying tribute to the ceramic thrown was actually getting rid of the toxins, as well as the way less dramatic ways of detoxing were.

When I first started treatment this is what I took:

Doxycycline 100mg caps 1 3x’sdaily
Atovaquone/Proguanil tabs 250/100 1 daily
Metronidazole tabs 500mg 1 tab, 3x’s on Saturdays and Sundays
Metanx caps 1 cap, 2x’s daily
Methylcobalamin injections
Omeprozole 20mg, 1 cap daily
Vitamin C (Rose Hips) 1000 mg, 1 tab 2 x’s daily
Silver Shield
Teasel Root
Milk Thistle
Liquid Chlorophyl

This is what all that looks like ~

IMG_2447

The thing with all that was juggling spacing them all out so that one didn’t affect the other in a negative way. Some needed to be taken with food, others without. Food was hard enough because I was limited from my normal eat-whatever-i-wanted lifestyle since birth. I was suddenly thrown into a whole new life and I wasn’t sure how I would maneuver it. So glad my husband helped me through.

After six months of those meds/supplements, Nystatin 500,000 U, 1 tab, 2x’s daily Mon-Fri and Fluconazole 100mg, 1 tab daily on Sat and Sun was added to the mix. I had heard a lot about Propolis, a liquid form of Bee Venom and how greatly it helped people with Lyme, so I added that to my treatment plan with the blessings of my Lyme Doctor. Herxing resumed with these additions, but I learned to manage through them. If you are going to begin treatment for these tick borne diseases here’s a couple tips:

Always carry a barf bag of some sort. When you go out into public, know where every bathroom is, and every trash can because you may need it.
Plan on packing a little cooler bag with snacks you CAN eat because you’ll need to snack through the day instead of eating the normal three meals a day. Go through your list of “can haves” and plan accordingly.
Peppermint oil, just two or three drops into a carry along water bottle saved me from many throwing up in the middle of a store and it’ll save you too!!!! Adding a couple drops of Orange oil to the Peppermint oil is even more beneficial. Even chewing Peppermint gum works.

If I think of more, I’ll update those for you. Those were the biggies for me though. The throwing up was a sudden thing, I never knew when or where it would happen. It just did. And then after that subsided, I began this gagging fest that is still ongoing. Try bending over to pick up your dog’s poop and gagging. Now there’s a pretty sight to display huh?

After 8 months of treatment on those things in the list, my Lyme went into remission so I was to end the antibiotics from the list above. During the last few weeks of that 8 month period, I started having weird lines on my legs caused by the Bartonella. So treatment began in January of 2017 and then the list changed in April 2017 (which continues for that bacteria) and includes the following list:

Azithromycin tabs 500 mg one daily (Mon-Thurs)
Sulfamethoxazole tmp do tab one tab 2x daily (Mon-Thurs)
Fluconazole100mg, 1 tab daily on Sat and Sun
Nystatin 500,000 U, 1 tab, 2x’s daily Mon-Fri
Omeprozole 20mg, 1 cap daily
Vitamin C (Rose Hips) 1000 mg, 1 tab 2 x’s daily
Teasel Root (3-8 drops twice daily)
Propolis (Half a dropper once daily)
Milk Thistle (6 drops daily)
Activated Charcoal capsules (2 caps daily)
Methylcobalamin injections

Again, herxing began and I’m still herxing. There are days when I just feel fatigued and have some pain, but yesterday I thought I needed emergency care and was bedridden. I should end the herxing in another week or two and then just go back to the gagging attacks. But like I mentioned, peppermint oil or peppermint gum helps a lot once herxing subsides.

So listen. Just because I listed out what’s working for me, that doesn’t mean you should stray from what your Lyme Doctor orders for you. What works well for one person, doesn’t always work effectively for someone else. That’s why Lyme Doctors are so important to see. They take into account each person’s history, etc and then design a treatment plan for that person. Thanks for taking the time to read. I do so appreciate you stopping by. Have a great day!!

When My Lyme Journey Began

For the past 37 years I’ve had physical problems. So I’m not real sure just how long Lyme/Co-infection disease actually began. Once infected, tick borne diseases can become dormant and “wake up” at a later date. For the sake of boredom on the reader, let me just say I was diagnosed with many ailments and put on various medications for each with little to no relief over the years. The past seven or so years symptoms progressed to the point of “handicappedness”. Canes, handicap parking places, even ocassionaly using store wheelchairs helped me get through going out in public places where standing or walking was a needful thing.

Over the years, I was diagnosed with Epstein-Barr Virus, Chronic Mono, Fibromyalgia, Mixed Connective Tissue Disease, Ulcerative Colitis and possible Crohn’s, Systemic Lupus, Costochrondritis, Pleurisy, Asthma, Left Ventricle Dysfunction, Pulmonary Hypertension (high blood pressure in the lungs which is a progressive and fatal disease), beginning of Scleroderma, Hyper-Thyroiditis alternating with Hypo-Thyroiditis and hot nodules, Closed Angle Glaucoma,………. And the list continued to grow. The last four years treatments for each disease other than the Glaucoma and Thyroid Ablation, did very little to alleviate growing symptoms.

I had a friend who urged me to go see a Lyme Literate doctor. She had pretty much the same symptoms I did and it turned out that she had Lyme Disease and some co-infections. I hemmed and hawed for a few months, until it seemed like my brain function was diminishing. I began having trouble finding the right words for sentences, and when I did find them, it felt like my brain and tongue weren’t communicating. Let’s see the list I showed the Lyme Doctor when I finally went to see him the last week of May in 2016.

*feelings of “skin crawling”, like there was a bug crawling on me but nothing was there

*shortness of breath on exertion (sometimes even without exertion)
*exercise intolerance
*sensitivity to light and sounds
*nausea and feeling like I have the flu all the time, but I didn’t
*dizziness
*trouble with attention/concentration/focus
*memory problems
*confusion/brain fog which increase greatly when fatigued
*extreme fatigue, sometimes comes on sudden
*chest pain
*palpitations/thumpings
*sudden heart rate increase
*sore throat
*painful glands
*hot/cold intolerance
*migrating pain ~ muscle pain that moved around. One time one thing would hurt, the next hour or day something else would hurt and what originally hurt before didn’t. Pain made the rounds.
*cramping in legs, arms, ribs, back, etc.
*muscle weakness
*rashes
*random electric shock sensations ~ legs mostly
*when cold, cannot get warm without soaking in a bathtub of very hot water
*drenching “hot flashes”
*chills
*random low grade fevers
*joint pain (sometimes with swelling around the joints of my hands, knees and ankles
*fluid retention
*inflammation EVERYWHERE
*rib pain in between and on the bones
*”lupus” face rash
*inability to do house chores without many rests (or get much accomplished at all)
*trouble choking (food, drink, spit)
*felt like my insides were turning to stone when I walked, or stood for more than a few minutes
*nasal, mouth, lip and ear sores/ulcers recurrent
*when fatigued, my legs would tremor when standing
*when fatigued and standing, walking, my chest felt like cement and pressure.
*Painful Lumps in leg muscles turned out to be cysts caused by Lyme bacteria
*Occasional Blurred vision w NEW prescription glasses (various times of day my eyes would get blurry even though my lenses were new. Then other days they’d be just fine)
*Swellings and Rashes (rashes appeared and disappeared at random, in random sizes, in random areas. Some felt like pins and needles, some itched, some didn’t have any symptoms with them. This is why I took pictures of the rashes and swelling)
*Restless leg
*Exhausted upon waking

I had gone to doctor after doctor, specialist after specialist, having test after test after test, even going to Cleveland Clinic in 2011. I don’t blame the long list of non Lyme literate doctors. Lyme and it’s co-infection mimics so many diseases and doctors not literate in Lyme/co-infection diseases just go with the obvious and treat the obvious. So when I would go in to see these non-Lyme Literate doctors, they would listen, do the tests that correlate to their area of expertise, then treat the symptoms that closest fit their assumption of what I had, and off I would go with no relief.

When I finally saw the Lyme Literate Doctor, I had a diagnosis of Lyme Disease, Babesiosis, Ehrlichiosis, and Bartonella Henselae within ten minutes. He saw my rash and swelling pictures, read the answer to the long Lyme Symptom Check List (I had all but insomnia, severe migraines, panic attacks, and depression) Not only did I have that, I also had been given a treatment plan. He took blood samples to send to Igenex Labs in California that specialize in testing for Lyme and Co-infections while explaining how each disease affects the body, and then did a clinical exam. It turns out that these tick borne diseases affected everything except my pancreas. One by one, the long list of symptoms were totally explained by the facts of tick borne diseases. When I left the office I think I was in total shock!!!

And that’s the beginning of my Lyme journey. Next time I’ll tell you about the treatment plan I was put on. Each person is different, and treatment plans for tick borne diseases aren’t a one size fits all. I will also post pictures of rashes and swellings that I had because people have asked about them. Many times people DON’T get the typical bullseye rash the CDC talks about. Some never get any rash at all.  Mine were’t really typical of what CDC expectations publishes. Another reason it’s important to seek a Lyme Literate doctor when you suspect Lyme Disease.