The truth in pictures of Lyme disease and more.

lymepill

Lyme disease is controversial. Only for those who DON”T HAVE IT! For those of us who have Lyme disease there are only facts! The controversy lies around the diagnosis and whose test is considered reliable. The controversy lies around long term Lyme disease and is it real or is it not. Because of the controversy, treatment, insurance, doctors, all get mixed up in this mess which leaves the patients always struggling, always suffering. Fortunately I have an awesome doctor. Not everyone does. Most people cannot afford this treatment. Look at all of the famous people who are now diagnosed and NOT getting better! If millions of dollars cannot get them better imagine how us ordinary folk feel! We don’t have the resources. We don’t have the means to pay out of pocket for the alternative ways that are helping so many. Or we go in debt trying. We can’t just lay on a cushy couch with a pic line and a maid and a home health care nurse and have that luxury of not working. Even those movie stars are not getting better! I wanted to share some truth in pictures and words for what an average ordinary person (me) goes through when facing this illness. This illness, Lyme disease, is not self limiting. I have no IDEA and neither do my many doctors, what part Lyme disease is playing in all of my other diagnosis. Is Lyme causing my seizures? Is Lyme making them worse? Some say yes, some say no. Is Lyme making my muscle disease worse? Is Lyme making it look like I have a muscle disease and I don’t at all? No one knows. Is Lyme disease causing my Iron to be too low, my parathyroid to malfunction, my vitamin D levels and B12 levels to be low? Some say yes. Some say no. Is Lyme the reason for my anxiety and depression or is it just contributing? Who knows! Throw in some PTSD and childhood sexual abuse, loss of family, loss of family pets, and sprinkle in all my other disorders and well it is hard to tell which pill I need to swallow first!!!!! Then the medications! The seizure meds don’t mix with the PTSD meds (which I still cannot find one I tolerate), and the Lyme meds don’t mix with the other meds. How do you find the right pill? Is there a pill to fix all of this???

Some people say that igenix is not a reliable test. Here is my test. It was considered CDC positive so it had to be reported to the CDC. I was reported to the CDC as having Lyme disease. If I was reported as a statistic then how can igenix not be valid?

lyme12

It IS valid. I have Lyme disease. So then I began a two year treatment. 5 different antibiotics, and countless other medications. Too many medications to list. But I took different medications every other week to treat the Lyme disease and the coinfections. Then I started the Cowden protocol which is a well known herbal treatment for Lyme disease. So I thought I was better. Until I had a grandmal seizure which lowered my immune system and once again all of my Lyme titers have come back positive. But labs are only one piece. When I have a Lyme flare of symptoms my joints become swollen. My face becomes a raw wound. My legs get a rash. Then the right side of my face becomes painful, my face droops, my eyelid droops. I get anxiety, I get a tremor in my hand, my seizures increase.I don’t sleep, I have widespread pain.  let me show you what that looks like…

It is not a pretty sight. It is very painful. So I thought that Lyme disease was over. I thought that the 2 years of the “die off” of Lyme was over. Now I must start treatment again. Who says long term Lyme is not real? Controversial? I cannot make up my lab results that say that I am now positive again for the coinfections of Lyme. I cannot create this face or these red knuckles or these seizures.

No one knows why at age 30 I was diagnosed with osteoporosis. I was still exercising then. The osteoporosis has only gotten worse. My bones ache. They say that in osteoporosis your bones don’t ache. Mine do. Some say it is the Lyme that makes that happen. I know when I was infected with Lyme disease even if no one did a test for it back then because of the symptoms that have progressed. Here is what it says about my bones. And I cannot take the osteoporosis medications. They are contraindicated in all of my other conditions. There is no fix for these bones unless Lyme is causing it or making it worse.

lyme11

Let me explain what this means….-2.5 indicates osteoporosis. Mine is more than -3.0 which is WORSE than your standard run of the mill osteoporosis. Apparently if I fell off a sidewalk with my foot I will break. If I step to hard or stumble I will break something. No one knows the cause. No one can give me a treatment. We have to assume it is Lyme and that the new treatment I am on will help. The new treatment is back to the herbs. These herbs cost $46. a bottle. They last about 3 weeks. Then I have to buy them again. I am on 4 different herbs. I was also started back on Doxycycline. This combination has made my joints already feel better. But my face is a raw wound and the small seizures are back. The die off of Lyme is brutal. Brutal!

So then my muscle disease. let me show you a picture of what normal muscle tissue looks like..

normal muscle biopsy

This picture is of a normal muscle sample from a biopsy that I got offline. Now lets look at what my muscle biopsy looks like:

photo

See those white circles in the center of the blue? That is dead mitochondria. Those are my type 1 muscle fibers. This picture was obtained after I got a muscle biopsy at the Mayo Clinic, and sent the muscle sample to England to a specialist who photographed it for me. The biopsy report from the Mayo clinic says I have Central Core Disease. Central Core Disease has a known mutation called the RyR1 mutation. I DO  NOT HAVE the RyR1 mutation. Now some people with this disease, a small portion, don’t have the mutation. So what do we have? How do you get a disease with a known mutation and have no mutation. Is it Lyme disease that caused this? Did Lyme disease make it worse? This disease, Central Core Disease,  is not known to have atrophy yet I have significant atrophy in my type 2 muscle fibers and visible atrophy. I will show you my atrophy:

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This is my left leg. You can see the scar on my quad. it is a faint line from my biopsy.. The right side of my quad and knee are so atrophied that my kneecap has become unstable and turns to the inside. I have to walk carefully. I get daily leg cramping. I have to favor my right leg which then tires it. Is this JUST central core disease? No one can answer that. Is Lyme making it worse? I think it is. I am now taking herbals as treatment for Lyme once again and my legs have become less weak. So I know that Lyme is a contributing factor.

Then I developed the Multiple Chemical Sensitivities which MOST people with Lyme have suffered from at one time or another because our immune systems are low and therefore cannot cope, is the best way I can describe it, with the chemicals that society now produces. All those pretty perfumes and fabric softeners and hair products and nail polish affects me. This is not what I want….

scootersign

But when people hug me, they get their perfume on me. When they pat me it causes pain to my muscles. I used to love to hug people. I don’t want to be in a scooter. I don’t want to not be able to hug people. But that is the reality of my life.

I passed out during my Lyme treatment because my body could not handle the the detox and die off of the disease. Here I am on the floor with a rash on my face after I fainted. My sweet boy making sure I was ok…

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Then there is the hair loss common among people with Lyme. Also common in low iron, and osteoporosis.

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So I went from this…

waterskiing

a professional water skier…to this….

wheelchairmeanddogs

So think about what I have to deal with on a daily basis. I think the pictures describe it more than my words ever could which is why I have decided to include them. My body is suffering. My life is challenging. Lyme disease is a horrible horrible disease that has eaten up my body. Central Core Disease, Osteoporosis, Multiple Chemical Sensitivities, Seizures, have contributed to a very very tired me. But that is not all that I have on my plate.

My daughter asked me last night why I was wearing her robe. I replied, ” We wrapped Jessy in my robe when we buried him, and I am cold, so I needed to borrow yours.” Both of my companions, my two dogs above, are gone. It is incredibly sad.

This is only a VERY small piece of the physical things I am going through. I am starting a new therapy for PTSD in 2 weeks. That seems overwhelming but it must be done. Because my body is not the only thing I need to take care of. My mind has been equally tired. Equally exhausted. Childhood sexual trauma has not been dealt with. My family chose to live in denial about the abuse. Because of that denial I did not get the help that I desperately needed. I am embarking on a huge project of sorting through and learning to cope with PTSD. Before that happens I have to go to the Mayo clinic this week for an iron infusion.

I cannot tell you the amount of times people in my life have suggested acupuncture, or chiropractic. I cannot tell you the amount of times my health has been minimized from the people around me who have no IDEA the life I am living. The insensitivity to the gravity of my situation has appalled me over and over again. Trust me when I tell you that I have put in thousands of hours into the research of my own health. Everything that I can try, I have.

This is me. This is my life. This is a small tiny piece of my life that I have shared with you. I share it to raise awareness for mental health and Lyme disease and all of the other health related issues I am going through. It is deeply complex. It is no wonder I have become angry with the insensitive people I come across. I nolonger tolerate insensitivity. The benefit in living in ones truth is allowing your emotions and choosing not to accept the non-compassion of others.

My heart goes out to others suffering from mental health challenges due to sexual abuse and health issues in general. My heart goes out to those suffering from Lyme disease and Central Core disease. My heart goes out to those people who are trying so hard to get well and are struggling with people in their lives, who may be going through this alone and who may not have the finances to pay for any of it!  May we stick together and give each other strength.

May we every day keep moving forward and not give up the fight.

My heart truly goes out to all of you.

49 thoughts on “The truth in pictures of Lyme disease and more.

  1. Wow, I can not imagine dealing with all that you are dealing with (and I am sure you didn’t mention it all). You are struggling in pain and it is not fair to also have to fight to be believed. You shouldn’t have to show the slides, you shouldn’t have to show the pictures…..but you do because it is a fact of life that people want to minimize pain in order for THEM to feel more comfortable….which just adds to your pain and struggle. There seems to be so much unknown about Lyme disease, I have another friend that has had all these different symptoms for many years and no one can tell her when it will go away or if it will. Thank you for being brave on here and posting this. And thank you for trusting me (and others) with this. I am thinking about you tonight.

    Liked by 3 people

    • Gosh until you said it, I didnt completely grasp why I felt the need to put the pictures and it IS because no one really understands and the pictures are kind of proof for what others dont even try to understand.thank you for reading and commenting. I feel for your friend, it is so hard living in the unknown.

      Liked by 2 people

    • Thank you for your posting. My heart goes out to you and I believe you should be in line for a service dog. I have Lyme disease as well but it is not in the active phase. I have broken over 350 bones in my body so I am very familiar with pain. I’ve broken my back twice both over 40% compression fractures L2 and T8. One thing I’ve learned is not to dwell on the pain. No matter how hard you must force yourself to keep in motion…to keep active. Most of all you must not feel sorry for yourself because no matter how bad you think you have it there is always someone else out there who has had it worse…. and suffered more. I thank god every day that my injuries didn’t kill me or leave me worse off. A number of my friends have been killed competing horses and you were a gorgeous professional water skier. That was a very dangerous sport. I feel so terrible that Lyme disease hit you so hard. No one knows why one tick carries a lethal variety and others carry one that’s easy to get over. I pray you will receive all the continuing support you need. Just keep active in mind and spirit and do as much to move your limbs as possible. Obviously drink plenty of good water since hydration is key in treating Lyme’s disease and muscle cramps.

      Liked by 1 person

  2. Jason, (opinionated man) indeed was true when he said this is the bravest post he has ever read… and i said so too myself… i got emotional when i saw your perfectly sculpted and athletic body as a water skeir to the one eventually in the scooter..

    Liked by 1 person

  3. Sorry to hear how you are suffering. My drs suspect long term Lyme, but test comes back negative. I have Fibromyalgia and my drs insist that Lyme is the cause. Lyme tests are highly rated as wrong most of the time with a false negative. Can’t get help without a positive test result.

    Liked by 1 person

  4. Basically, you rock!
    So well written, to the point and.. just.. wow.
    Don’t you just love it when folks are being helpful and suggesting if you JUST did this and that you would be fine, and obviously you just are not trying hard enough?!
    what is that all about?hehe.
    Being tough and standing your ground when weak, is simply so darn draining at times.
    And seriously, I am only dealing with my own and my childs chronically severe dermatitis plus comex complications!..
    so yeah… your post is encouraging to keep our heads up and persevere!
    Thank you. ❤

    Liked by 1 person

    • Thank you so much! What a great compliment! Oh and having a child with health problems…people can be relentless with their unwaranted unwanted suggestions. As if you havent spent a thousand sleepless nights pouring over research to get your child the best help you can! When we would give anything, anything, for our child to be well. My daughter had a kidney removed at 4 months old. We had to move mountains while being sleep deprived to finally get someone to listen. But we can just never give up. Not on ourselves or our children. It does get hard standing your ground, it absolutely does! It helps to have people out there like you who give encouragement. Thank you.

      Liked by 1 person

      • You are welcome! To be fair..what we are contending with is no where NEAR the ordeal you have to live with daily… I cannot begin to imagine how strong you really are. I only mentioned it to convey how we take things for granted, and that I was feeling a TOUCH sorry for myself ( just a little bit) but your words here gave me a boost of strength to face my mediocre in comparison situation. (though yes still annoying and difficult)
        Hence, to YES – encourage you to KEEP talking, and being a voice. 😀
        Thanks again Bethany!
        Best of wishes – Belinda.

        Liked by 2 people

  5. You are no doubt a true warrior.
    To have the courage and strength to continue and be able to produce a clear narrative (sorry that’s the UK civil servant in me- 40+ years; hard habit to break) so that those not plagued by this disease can understand is praiseworthy.
    I wish you well for your life.
    Roger

    Liked by 1 person

  6. This is a very thought provoking post. Sharing the photos really gets the message across in a very powerful way. 💝💝💝 I really admire you and your strength

    Liked by 1 person

  7. This is horrible, Bethany — just awful! I’m so sorry it’s been happening to you (there isn’t a word in English that adequately conveys the injustice of it). But THANK YOU for having the courage to share your story, and especially your photos. You’ve done a lot of people and their doctors a big service by showing just how devastating this disease can be. Sending healing thoughts your way …

    Liked by 2 people

  8. You have my sympathies – and my outrage – on your behalf and on behalf of all the others who suffering, a large number still undiagnosed, no doubt. It has been said by more than a few reliable doctors and scientists that it can take 15-20 years for “the doctor down the street” to get the latest info. Brave disclosures like yours will – hopefully – shorten that time. Thank you.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to educate a world!”

    Liked by 2 people

  9. Hi there. I have Lyme disease too. It’s a chronic case. I’m still treating 3+ years after finally getting a correct diagnosis. Jason over at Opinionated Man sent me your way and I’m so glad he did. I’ve been blogging for about 2 years about my journey with Lyme. Beat to you and so happy to connect!

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    • Hi! Thanks so much for commenting! I will go check out your page now. I am currently on banderol,samento,pinalla, burbur, for over 2 years. Trying to encorporate stevia but so far get to 3 drops. After i had a seizure it brought it all back over a month ago and i feel like im starting from scratch. My doc wanted me to do a month of doxy but in a week it tore up my stomach so im sticking with the herbs.it took me a year to get my gut right after rocephin ! Headed to your page

      Liked by 1 person

      • Hi there. I did about 30 months of rotating antibiotics in the beginning. Now both my doctors have me. On Cats Claw and reservitrol. Plus herbal drops and other herbal support. I’m still dealing with other reactivated viruses, mycoplasma, fatigue, joint pain. This is a crazy disease!

        Liked by 1 person

    • Mycoplasma just cane up positive for me after i had a seizure ahd my immune system crashed. Sounds like you and i are dealing with similar symptoms and virus/bacteria. I truly cannot believe my joints hurt again after allllll of the rocephin and cowden herbs. Hoping stevia drops help. Wishing you well!!!

      Liked by 1 person

      • EBV is my worst co-infection. It’s what got me started on trying to find out why I kept getting so sick! It flares up often. And Mycoplasma. I didn’t even know about that one until like a year in and I asked my doctor to test me for it. Winner! Dr. Horowitz’s book Why Can’t I Get Better has really helped me look for other issues. Have you been tested for HHV6 and CMV? I just started an herbal drop protocol to address viral loads. I really hope you see results from the stevia drops. Is that to hit the biocysts? Are you happy with your doctor(s)? I’m in Texas. You’d think in Houston there would be lots of Lyme doctors. There’s one. The way this disease and patients have been treated or not! is just criminal. Ugh but I digress. Have a good day. 😊

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      • Epv was pos for me too! Stevia is a cyst busted. I got sick of flagyl. These herbs I am on now cover all of it. I interchange cumanda and unula but right now stcking with 4. I love my do tor in florida.she bases her approach on horowitz. Ive read his book

        Liked by 1 person

      • Ugh EBV is the bane of my existence! I’ve been dealing with it flaring off and on since 2009. It was the very reason I started asking Why it was recurring that led me to Lyme so I guess that’s good? Lol I just had an EBV test a few weeks ago and number is high. Not horribly high but still. I feel like it’s always there lurking! I think Dr H has a workbook coming it in Oct as a companion to his book. Not 100% sure but I have it preordered on Amazon 😊 I’m so glad you like your doctor. I have 2 now because I just had to change gears after years of abx. Both are llmds and I like both. I tested 100% CDC + in March 2013 and again in Feb 2016. No new bites so I believe it is same infection just showing its very ugly head. Crazy stuff. Just when I think I know much of this disease , then Bam, something new. I’m glad it’s Friday. I’m back at work after summer break and it’s been hard. Have a good day, friend.

        Liked by 1 person

      • Most of the research i have read said stevia kills it. The nutramedix stevia whereas the other herbs keep it from reproducing and keep it at bay. She feels strongly about it but it is a nightmare of herxing to even get past a drop!

        Liked by 1 person

    • I just cant do the abx anymore. I have a llmd thankfully. I am happy with the nutramedix products but i had NO idea this all could come back again with just a severe illness or seizure. Sick of ebv for sure!! Oh im sorry you have to go to work!i tested pos for rocky mountain spotted fever! Insanity. Havent been bitten so old infection back too. Hoping the nutramedix stevia does the trick! Hoping hoping!

      Liked by 1 person

  10. Lyme’s disease is beyond dreadful. We have one friend who suffers with it and my daughter was very ill after I found a tick attached to her ear. Luckily she had a course of antibiotics and fully recovered. So many are not as fortunate. It seems to me that you have had more than your fair share of suffering to deal with. May you find a way to break the circle of abuse and find some measure of health and happinness in the future.

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  11. Lyme disease and co-infections is a terrible disease. I know because I just found out after over 20 years why my health has been so horrible.Worse is I have four kids and my husband who also now have it. How do we decide who to save when everyone is declining? We started with my oldest because after six years of uncontrollable seizures, and then cognitively decline so fast we figured we needed to treat him. In the last year, I started having seizures, and the pain and fatigue is terrible.My own cognitive decline makes daily life more than a challenge. I just wanted to say good for you for posting your story, I will one day, when it is safe. Right now I have to keep a low profile, because when the doctors don’t believe in Lyme and a whole family is sick, and they have no answers, they start to say things like “the mother must be mentally sick and that is why the kids are, their symptoms are because of her” or the kids are just looking for attention, how is everything at home. It must be stressful having four kids, do you and your husband fight a lot around the kids? The best was my oldests seizures must be behavioural. I commend you for speaking out, I do what I can to try and spread awareness, but I just can’t for the safety of my family make too much noise. When I can, I WILL be. The way the CDC, big pharma, and government are treating human beings is worst than any terrorist act. The emotional, financial, physical pain sufferers endure is appalling. How they could willingly allow kids to lose their childhoods and ruin families and have people suffer only to die is something I will never understand. I also want to say, you were beautiful before lyme took over, and you STILL are!! I’m praying for change for all of us that know, and those that are in the dark and misdiagnosed.

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    • Thank you for sharing your story. It is very very difficult, emotionally draining, physically debilitating, to have Lyme and the coinfections. Having to be shoved around and shuffled around to different doctors who don’t believe it just adds to the frustration. Hoping you find help for the family soon. I just take the cowden herbs now so I don’t need a doctor. Just order from nutramedix. I do have a doctor but i am only on the herbals.

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  12. We will fight together. I am so sorry for all the discomfort you suffer trough. Go back to the beach with binoculars if you can after your infusion….breathe the salt air and listen to the waves. I hope it works with your schedule to do that.

    Liked by 1 person

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