Lesson 866 – Lyme Disease Thursday – Status Week 3

Discover Magazine recently issued an in-depth edition taking a look at “Ticked The Battle Over Lyme Disease in the South.”

In the preface the magazine states:

In 2013, the Centers for Disease Control and Prevention (CDC) revised the stats on Lyme disease: Instead of the 30,000 cases reported annually to the agency, new patients with the tick-borne infection number 300,000 strong across the United States each year. The count is critical because untreated Lyme disease can result in devastating neurological and cardiac complications and long-lasting pain and fatigue. With CDC validation hundreds of thousands of patients may be diagnosed and treated earlier, when the disease is easier to cure.

The magazine goes on to say that the CDC numbers do not apply to the American South where many physicians say that Lyme disease is non-existent.

Which is, of course, hogwash.

People travel. People bring their dogs and cats when they go on vacation. People who have Lyme disease donate blood. Mosquitoes fly. Fleas jump from one warm host to the next. People have sex (yes, there is an ongoing discussion that Lyme might be transferred by sexual contact.) If we can be exposed to Listeria on our spinach that comes from a field in California, is it really that improbable that we could be exposed to a bacteria that is transmitted by way of blood (even one that started off in Connecticut)?

My point is that although Lyme disease may not be as common in the South as it is in the North, to even pretend that it doesn’t exist or that it’s not likely to exist (they claim that it’s too hot for tick nymphs to survive) in a geographic location is to still be using information and logic from before the era of global travel.

If there is blood, if there are hosts, and if there is a method of transmission – there can be Lyme disease anywhere. Anywhere.

Even in Australia where the doctors there claim that Lyme does not exist on the continent and yet people seem to be dying from the disease.

Anywhere.

It simply defies logic (and common sense) to think that a disease that lives in human blood would not be found anywhere there are humans.

If you see a copy of the Discover magazine, pick it up – not only does it give a good background of Lyme Disease in general but it does a very good job at documenting what Doctors are trying to ignore in the South (and in some places in the North.)

Be forewarned though, the articles will raise your blood pressure in by way of outrageous indignation toward the medical community.

With regard to my Lyme journey, I seem to have gotten much better control over being nauseous from my medication. I’m still having a difficult time swallowing the capsules (it feels like they get stuck in my throat) but I don’t feel the need to keep a puke bucket by my side anymore.

And the addition of the garlic capsules with the probiotic mid-day seems to be keeping those nasty little yeast buds in check. (Big yay on that one!)

This is what I’ve noticed this week:

I’m having a phototoxic reaction to my medication (I was warned this could happen.) When I’m in the sun my skin burns, but it’s not like just having a little too much sun, my skin STINGS. It really hurts. Before I realized what was happening, I burned the heck out of my lips, nose, and hands (from being in the sun on the steering wheel.)

Now I have to cover up when I go outside (long sleeves, pants, sunglasses, and sunscreen.) I’m kind of like a vampire these days waiting for the sun to go down so I can go outside and play. This should end once I’ve completed my treatment.

this is how I wear my sweaters now while in the sun.

this is how I wear my sweaters now while in the sun.

With regard to my symptoms, at my worst, I wasn’t able to take my shoes off with my feet due to foot pain (you know how you slip them off of each other using your toes and side of foot?) I can now do that with very little pain (there is still a sore spot near the top of my left foot that is a little tender.)

Going up stairs is easy (before, at times I had to “crawl” up the stairs using my hands and feet.)

The only numb spot remaining on my left foot is my little toe and even that is “half” numb. I have a little bit of feeling in it.

I had a large lump on the back of both of my Achilles tendons. If I pressed on the lumps, they were exquisitely tender. They are not tender at all anymore. Now they are just lumps.

My knees don’t hurt.

My mood and energy are better. I’m sleeping better and I’m not waking up in the middle of the night (sometimes it was for hours at a time.)

And I have realized that I’m not making as many mistakes in my writing as I was. (I was having trouble recalling some words – try doing that when you’re a writer.)

Overall, I’m greatly improved.

And because of that, I’m a little frustrated.  Treating Lyme is not supposed to be this easy. I’ve heard and read the stories just like you have, about people who have struggled with months and years of treatment. Heck, we’ve spent years trying to get one of my sons recovered from his debilitating case of Lyme and we’re not even close with him. He still suffers.

And then I go and seem to get better in just a few weeks.

Could it be that I didn’t have Lyme?

But if it wasn’t Lyme then what caused all of my tendonitis? All of those muscle twitches (which are mostly gone), and all of my neurological symptoms and rash?

Why was my medical test positive for Lyme if it wasn’t Lyme?

And why would I improve so greatly from an antibiotic alone (not even Motrin) if there weren’t some sort of bacterial agent? There is some discussion that antibiotics have an anti-inflammatory tendency (if you kill the offending bacteria, the body no longer needs to be inflamed) but that’s not enough to explain why all of my symptoms seem to be improving. I’ve been on anti-inflammatories before (Naproxen and Motrin) with little improvement, 3 weeks on antibiotics and my inflammation goes away?

I go back to Doc. Holiday next Friday. Even with my tremendous improvement, I’d be surprised if he took me off of the meds just yet.

As lucky as I seem to be, I also know from experience with my kids that Lyme can be a tricky foe. The real proof in the pudding will be when I go off of the meds to see if my symptoms return or not. If they return, I go back on treatment. If they don’t , then I’m done. For now anyway.

It’s a waiting game from here on in.

Oh and guess what? I know of a few people who have recognized some of their symptoms in my story and as a result are seeking Lyme testing.

Kind of makes it all worthwhile.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

***
Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

Also, join me on Facebook to find out more about the flock (children and chickens) and see some pretty funny chicken jokes, photos of tiny houses, and even a recipe or two.

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14 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

14 responses to “Lesson 866 – Lyme Disease Thursday – Status Week 3

  1. Nancy

    Try taking your capsule with a spoonful of applesauce…I have heard of a lady Tick specialist in Amherst. Several of my friends go to her. Enjoy reading your blog, and wish you well……Nancy

  2. Be careful not to stop treatment soon, even with such improvement. In my experience (& of others) you will make great strides at the beginning. But while that is happening the Lyme is also busy hiding itself: cyst forms & biofilms. You’ll need to expand your treatment to get these forms, and it will take a lot longer to eradicate these forms.

    The good news is that you are treatment responsive! Congratulations!!!

  3. Donna

    Is it any wonder that the medical community in the South doesn’t validate Lyme? After all, they still refer to the Civil War as ‘the Act of Northern Aggression’. It is disappointing to say the least. Sharing your journey is so important for the people that deserve a voice and need support. Continue this very important work. Sending positive thoughts and wishing you progressive improvement Wendy.

    • Clint L.

      Excuse me? I have lived in south Louisiana for 32 years and I have NEVER heard anyone refer to the Civil War as “the act of norther aggression”! I also have chronich Lyme Disease. I’ve had it since 2005. No, there aren’t many Lyme literate Dr.’s in the south. But, Dr. Jonathan Forester, from Pineville, La., is an expert on Lyme. He gives lectures on the subject, all over the nation. And remember, thousands of GREAT MEN FROM BOTH SIDES died fighting in The Civil War. So show some respect. Thank you.

  4. Dawn Bowden

    You just never know what’ someone is going through. Wish you well!

  5. Thanks for a good article Wendy and yes there can be very quick positive responses with antibiotics when they first hit the active spirochetes/infection without warning, but as others above say they soon hide in many other forms, ensure you are treating those forms and be careful under treating can cause it to come back with a vengeance. And yes it is absolute hogwash the way they try to insinuate that Lyme is on one side of the street and not the other. Especially when it is transported by birds. The thing you didn’t mention, so I wonder if you are aware, is that birds are the main concern in regards to the spread of this disease. Due to culling of Deer, deforestation, changes in the environment, lab experiments and the spread of this disease being so appallingly mismanaged for decades now, birds have become the first and most available blood meal for these parasites and they are competent reservoirs and hosts and are now rife with Borrelia & many co-infections/Lyme disease, as well as they come equipped with the quaddie of arthropods that transmit the disease, fleas, mites, lice and all stages of ticks. Migrating birds are the main reason Lyme is so wide spread all around the world now and yes Australia is absolutely rife with it, but most here are having their suffering exacerbated tenfold due to denial, cover ups, misdiagnoses and maltreatment. Most have got Lyme, that I know, after being subjected to colonies and/or nestings of ground foraging birds, Indian Mynors are beyond rife and Pigeons are not far behind, this is also how my husband contracted Lyme, after sleeping in a Depot bed that was infested with the quaddie mentioned above, due to bird’s colonizing and nesting around the balcony surrounding the room that he slept in. Until the paramount role that our common ground foraging birds play in the spread of this disease is made common knowledge, incalculable amounts of people will continue to suffer unnecessarily.
    Regards J

    • Jodie, you bring up a good point that I have also considered: when on antibiotics the spirochetes hide. Yes, many are killed, but many change form and go dormant to awaken again when the coast is clear.

      • There are only two narrow windows when ABX helps to cure or reduce effects of Lyme. First is the within three weeks of being bit. Take 100mcg doxycycline 2X a day for a month. 99.9% you will be cured of Lyme. CURED! After a month doxycycline is worthless as Lyme has burrowed into organs not reachable with doxy. Second is not exact. Usually when you are at your worst with Lyme. How do to tell “when you are at your worst? You lay in bed WISHING you were dead. You can barely stand or have to crawl to the bathroom.

        THEN a PICC line is fed through a right arm vein to near your heart (NOT as bad as it sounds). You are given ABX on ice to take home and inject in line twice a day. Return to doctor/hospital once a week to have line cleaned and pick up new supply of ABX. ABX changed every three weeks as body develops immunity to ABX, Usually rotate Ceftn, Zithromax, Rocephen but there are others. Stop after six months.

        This should “break the back” of Lyme but no cure! While doing all of this work on Wilson’s Syndrome (take thyroid T3) getting your body temp to 98.6, No smoking,drinking etc. With metabolism speeded up your body will detox. Test your pH with Alkalive test strips (Amazon). Keep working until pH is above 6.5, It takes one to six months for body to detox. BUT you WILL feel better.

        STOP all gluten – now! Seafood, chicken are OK. If you wish to remove metal poisoning take doctor prescribed cilantro. Cilantro acts as magnet pulling metals out of organs. I felt no better as metals had burrowed deep into organs decades ago no longer causing no problems. I tested off the charts but now metal free. Stop all salt and spices. Makes you hungry, ONLY if you are overweight and most who have Lyme are overweight. You will lose weight slow but steady and not be hungry. No food after 6 PM.

        Metabolism (detox), NO gluten and no snacks plus planned meals (count calories) are the keys to feeling MUCH better with Lyme. You STILL have Lyme but, if you are like me I went from in bed wishing I was dead to “I’m fine” in two years. Still, I have to have T3 handy if temp drops and always avoid gluten like poison! There is much more but this is 80% of it. Good luck!

      • I completely agree with the effectiveness of Doxy after a certain time. It did its job initially and then never did anything. But when I was on other antibiotics I had great improvement. I was on amoxicillin and biaxin, the latter giving me the greatest improvement over a period of six months. I also exercised gently and took some supplements. Treatment necessary for remission will be different for each person depending on their other issues but I really appreciate your response.

      • In case you aren’t aware of it, the kidney and liver removes 98%+ of ABX seeing them as poison. Thus the reason for PICC lines to the heart area. Bypasses the liver and kidneys. Personally ABX never helped me except for the PICC line ABXs. I was’t diagnosed for years so I missed the first 3 week window where doxy will CURE Lyme. When someone tells me they’ve been bit I stay on them until they find a doctor ASAP!! who will prescribe one month doxy 100 mcg 2x a day. Most doctors who follow the AMA treat it as a bug bite then say ” come back in six months if it is not better”. AARRGGHH! By then the Lyme is imbedded in body organs. Doxy is worthless. The person’s life is forever changed. I receive hundreds of e-mails a day from people referred to me. I am NOT a doctor so I have to be careful in what I say. But I also receive hundreds of e-mails from people who followed by suggestions and regained their lives! Two years ago I just wanted t die. Today my health is perfect except I will always have Lyme. Just in complete remission.

  6. Please send me an e-mail address and I will send you very helpful mostly unknown information on preventing or (if you catch it) significantly reduce the horrific effects of this quickly spreading pandemic. Three years ago in the final stages of Lyme I lay in bed waiting to die. Today I have regained 99% of my health and Lyme is in remission (not cured). I do NOT share e-mail addresses nor am I selling anything. I just wish to help others with the relief I discovered. gyantis@gmail.com
    Gary Yantis

  7. I also always feel better while taking antibiotics. I considered that they are providing an anti-inflammatory effect that I can’t get from ibuprofen as well, and think there is something to this possibility. I have been off antibiotics for two years now and am getting worse again. Lots of tendonitis, lots of pain, and more. So I think we need to be prepared to treat off and on for life.

  8. Work with an Integrative doctor to improve your immune system as well as actually treating the Lyme and the symptoms.

  9. Be very careful when people offer diagnoses over the Internet. In fact, be very cautious about what you are reading from me. However, if our hens could type with their bills, their comments would be priceless and beyond doubt.

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