Lyme Treatment: What I’m Doing

supps and pillsNow that I’ve let people know that I’m better, some are starting to ask me: What are you doing? Who are you seeing?

I can’t divulge publically the name of the person I am seeing for her privacy and mine. However I will say it’s an Naturopath (ND) and she is trained by ILADS (International Lyme and Associate Diseases Society). Those aspects were important to me.

Sadly there is not one treatment plan that will work for everyone with Lyme. And not everyone with Lyme Disease just has the Lyme bacteria. Most patients have other issues that make it harder to get better such as coinfections. Common coinfections with lyme are Bartonella, Babesia, and mycroplasma as well as viruses like Epstein Barr and HHV 6.

I’ve been reading Dr Horowitz’s book Why Can’t I Get Better and he gives the metaphor of Lyme patients having 16 nails in their foot. Each nail represents a condition or coinfection. If you treat Lyme, that takes out one nail in the foot but there are still 15 other nails.

My “nails” have been viral, bacterial, mold sensitivity, adrenal issues, thyroid, hormones, arthritis and MTHFR.

My first doctor who diagnosed me really only understood bacterial and viral issues. He treated me with very strong doses of antivirals and antibacterials but I was getting worse. Finally I noticed my pain levels were better on the protocol than off, but there were so many things worse on the protocol. I had no energy and couldn’t think. I’d forget the name of the town I was from sometimes. I had relentless nausea. I wanted to kill the lyme and bacterias but it was just making me miserable.

I did a lot of research on my own. That first doctor gave me the gift of the proper Lyme diagnosis, which eluded me for many years even after seeing countless top doctors and naturopaths. This doctor believed me and didn’t think it was “all in my head” and to “just go meditate” as other doctors said. He listened and tried. However he just wasn’t up on the latest lyme research. I knew after my support group helped me get educated with articles, conferences, and more, that I needed someone else. Some Lymies go it alone, but I wanted a doctor to guide me.

I moved and found a new doctor in the area, however I still have to drive a ways to see her. She really helped me identify the main things I needed to focus on. I had also attended a conference on Lyme and used a lot of that information to figure out what was plaguing me and what to test.

What I added to my treatment was:

  • Treatment for Bartonella. I had bad nerve pain, burning, and other symptoms of Bartonella (there are many). And numbness and tingling in my arms and legs, and bad foot pain. I still do have numbness on my face. Rifampin has helped with this (it’s an antibiotic). It also lessens my pain.
  • Byron White herbs. I take A-L complex, which is for Lyme but if you look up the herbs that are in it, they are also antiviral and help for other bacterias too. When I first started it, on only one drop, I had a “herx” (which is a temporary worsening of symptoms) very badly directly after taking it. My feet and legs would hurt so much. Now I am up to 22 drops. Once I got past 15 or so I started to really feel better. But it took 5 months to slowly work up.
  • Cholesthyramine powder. It’s for mold sensitivity. I was exposed to a moldy house. Luckily I was able to get out, however now I am very very sensitive to mold. I was tested for the HLA mold gene, and it means you can’t process the biotoxin that binds to mold. People without this sensitivity can detox it out better. Once I was able to take 2 packets a day I felt major improvements, particularly in energy and brain fog.
  • MTHFR treatment. MTHFR is hard to explain. It is not a shorthand for a swear word. It’s a genetic condition that some people have that, again, prevents them from detoxing in the same way. The good thing is there is an easy fix. You have to take methylated B-12 and methylfolate. This is definitely genetic and it’s likely people in my family have it. However even though it’s just a matter of a vitamin, some people still don’t want to learn more or treat. It’s a condition that contributes to a lot of chronic conditions and mental health issues, miscarriages, and Alzheimer’s. People who have only one copy may not have issues but combined with lyme it can prevent one getting better if you don’t treat.
  • Hormones, endocrine, and thyroid treatments. I call this “fallout of lyme”. Lyme trashed my adrenals, thyroid and other organs that lyme destroys. So I had to get those adjusted with help from herbs and supplements. I mention this because it made a big difference for me in pain levels and energy.

These are things to consider. If your doctor hasn’t checked MTHFR, why not ask? I wish I hadn’t waited until my hormone issues were more obvious (like incessant periods) in order to check them, because not even my doctor anticipated that adjusting them would help my hip pain. I think being persistent is a good quality in a patient and a doctor. They can’t read your mind, and there’s so many tests to run and only so much money and time so you have to think of your worst symptoms and do your own research and help the doc out a little. If you doctor is unwilling, move on. If I had listened to certain doctors I saw I’d be doing nothing but pain management, and I’d rather address the cause of the pain not just mask it.

This does not mean you should DIY your Lyme treatment to do exactly as I do. For example I take DHEA which is fine to take if you are low in it, but isn’t good to take if you are already high in it. You need proper testing and not just assume it’s low or high.

A lot of Lymies are ready to give up at times. It’s frustrating, expensive and a lot of work to get proper treatment. But I want people to know that I am making improvements and so can you. Please don’t give up!

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Improvements

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When I feel better, I don’t often stop to think about it, I just move on to all the stuff that was waiting on me while I felt awful. Things I wanted to do, things I had to do, just life. And then other times, when I am feeling better, I tell people then it gets worse right after! It’s some sort of curse. But I have noticed now a pattern of getting better, not just getting one symptom going away and another emerging, like before, but no really better. My head is clearer, I have less fatigue and even now some pain going away. But fatigue being better is the biggest one, because who can do anything if you are tired?

It’s only been since my new doctor who is a naturopath who is special trained by ILADS (International Lyme and Associated Diseases Society) that I have had improvements. It’s been an investment of time, because the traveling is long, and money, because she is not covered by my insurance and there’s a lot of supplements and medicines to take. If I wasn’t getting better, I would not want to spend that time and money much longer. But now, it’s worth it.

I mostly post this because I want to give other lyme patients hope. Now some may say it won’t last, or that I am not really better if I have to take herbs and antibiotics still. I am still in the process of getting better. But even if I have to take some of these things for life, I would rather have a life taking supplements than a life of pain and misery.

The problem with lyme, is that it’s often not just lyme! It’s co-infections, it’s mold, it’s toxins, and that it’s different for everyone. And, now part of what I am dealing with is the fallout from lyme: what lyme destroyed in its path. For me it’s some hormonal things and adrenal and thyroid issues among other things. I wish i could say to everyone to take what I take and you will be better. But this combo may not be best for you. I will say to do what I did: find the best doctor you can, be willing to travel and make an investment in the process for a certain amount of time before you want to see progress.

I really hope I keep improving at this rate, but if I don’t I will still enjoy the time that I am better and try not to be worried every minute that it’s going to get worse. And at this point I’ve also learned how to live better with chronic illness, which helps. I’ve learned my limits and how to work around them. I’ve learned how not to make myself worse.

There were lots of times I wanted to give up but something told me to keep fighting. I kept researching and trying to find ways to improve. I try to connect with other people with chronic illness and lyme who are positive and help relate. I think these things are important and illness can be isolating so finding others who have a similar situation is important. And don’t give up, I care about you.

What it’s like to have cognitive issues from Lyme Disease

I don’t have the worst cognitive issues that some lymies do…such as losing years of their memories, forgetting how to speak at all, not being able to read at all. Lyme can do that. But I still have issues. Anything that is taken away from me is an issue. And I will fight to get it back.

I was usually a pretty smart person, or so I was told. I had a successful career, graduated with honors in my Master and Bachelor’s program, did extracurricular clubs and had hobbies. I was always sort of shy so social stuff never came easily to me (remembering names, asking good questions, etc).

When you have a mind that you can trust and most things come fairly easily to you, at least in your chosen field and everyday life, it’s a hard to lose that.

At first it was just a slow and foggy mind. Things would take longer, I’d run out of energy but it was still the same in way.

Then it was trouble remembering what I was doing.

That got a lot worse. I’d go into a room and have no idea why I was there. I would open the fridge and not be sure what I was looking for. I’d log in online and have no idea what my goal was or where to go.

Driving is an issue. I can’t keep track of the places I’m going and i always miss an exit. I’ve had a few close calls so I try to limit long drives and get help with it.

Other issues were trouble tracking. I’ve always had a pretty good attention span. Sure sometimes during long lectures or conversations my mind would drift off but that got worse. Long winded people I can’t follow too well. By the time they are finished with their long story I have no idea what the beginning was about. I can’t read long articles and when I read a book I read a chapter or two at a time, if I’m lucky. Sometimes it’s hard to get that.

Recall of information has been hard too. At one point I remember having trouble remembering the name of the town I was from. People’s names would escape me. Finding the right word was hard a lot. I’d have the words right around it but not the precise one I needed.

I’ve learned to let myself off the hook a little. I was so upset with myself for having these issues and making mistakes. I’ve learned now to let it go. If I go into a room and can’t remember why, I just do something else. It will come back later if it’s important.

But I think cognitive issues is the hardest thing for people to understand. Maybe they think it’s because I’m tired. It can be so hard for me to keep up in a conversation, particularly with multiple people. I tell people I’m slow and they don’t really know what to say. I am not sure how to say this because it sounds arrogant but when things weren’t a struggle for you, but then they are, it still could be functioning at someone-who-is-not-sick’s best. Because mentally we are all different, have different memory capacities, etc. So people may not understand that you are struggling and say, “Oh we all have that.” Even though for you it’s changed.

Also things that were a struggle before are nearly impossible seeming now. Math was always hard, remembering names, history. Even harder. I play to my strengths now. I used to push myself and challenge myself but now every day is a challenge with just daily life so I have to do things that come easier to me. Read topics I already understand a little about. I do art since it’s always been a strength. I write, because I’ve always enjoyed it, but don’t pressure myself to be perfect grammatically.

I do feel like my cognitive issues are a bit better in some ways than at my lowest point but they still prevent me from doing everything I want to do. But I can get around them better and I don’t let them get me down as much. I also know I’m not perfect now, and before it was harder for me to admit I was wrong (ok don’t ask my husband about that). Now since I know I have issues it is easier to admit I made a mistake and to try to improve.

reminder

Ways to help with cognitive issues:

  • If someone is talking too fast, try to tell them to slow down.
  • Take notes or have a notetaker for important information (such as a doctor’s appointment).
  • Write yourself notes and place them strategically around the house where you will see them.
  • Set timers for medication and other important events.
  • If misplacing things is a common problem, make it a habit to clean up on the regular so clutter won’t pile up and hide things.
  • Get rid of unwanted items and unnecessary activities. You must streamline your life.
  • Use electronic apps and calendars to help you. Scan documents that are important.
  • Set bills to electronic forms if that is easier to remember.
  • Be up front about your issues when meeting people and let them know you have issues with remembering. Usually people are quite nice about it I’ve found.
  • Turn spellcheck on your computer to all programs. I’ve noticed Lyme people tend to misspell a lot and I do too. But my computer corrects all misspellings so even quick facebook posts can alert me to a misspelled word I might miss otherwise. (Why does spellcheck thing spellcheck is spelled wrong?)

If you have any tips for helping with cognitive issues, please write them in the comments. And be compassionate to those who are struggling with cognitive issues. It’s one of the most humiliating issues for me and I’m sure others too.

I will be getting to some recipe posts soon! I was too tired tonight to get it up and already had this post in the works.

Now I’m off to bed before I fall asleep on my laptop.

kitten laptop

(source)

 

Chronic Resilience

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Before all this mofo madness began, I finished a book called Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness by Danae Horn.

I appreciated the combination of practical advice and true life stories of real women in this book. The author, Danae, has a health condition that causes her issues with chronic pain and fatigue, which are some of the more common issues in many illnesses. However the theme of illness derailing what you wanted to do or expected to do with your life is a biggie in this one. These women in the book, a few of whom are terminal, deal with adjusting expectations, and struggling to live life to the fullest despite their lifespan being decrease by something like cancer, or their abilities being limited by fatigue or pain or organ failure. How do they adjust? How do they keep doing what they are passionate about but not make themselves sicker in the process?

Danae does not just pick stories of women with perfect happy ending stories, no, they struggle as she did, but they have strengths that helped them overcome it. She outlines different strategies to help you get through this tough time, but also to not let your illness sideline you.

Trained as a life coach, you feel gently guided by Danae to really hone in on what you are passionate about, cut out the crap in your life that’s weighing you down, and pursue what you want to do at a pace appropriate for your illness. And let’s face it, a lot of what some of us with disabling conditions are passionate about is getting better and managing health appointments to get to that place.

Danae also believes in taking care of yourself. I never felt overly pushed to “move on” or “focus on only the positives” as other self-help books can make me feel. No, Dana feels strongly about putting your health needs front and center in your life, making sure you get the right diet, pamper yourself, and even indulge a little as appropriate. And cites research that pushing away real feelings to only be positive is detrimental to health. She keeps it real, and I think she’d understand that even though I want to be perfectly sugar-free, sometimes I cheat and eat a little dark chocolate. I think she’d sneak a piece maybe even, but then we’d follow it up with green juice the next day.

I can say this book was part of an inspiration for this blog. I’d be wanting to start a new blog for awhile but she helped me get motivated. Her ideas helped me feel less overwhelmed by life, because by outlining what’s really important, you make more time, even if most of your day is feeling like crap.

After reading her book, I since learned that Danae is going into kidney failure. However her husband was able to become a donor. What love! I wish them both lots of luck for the surgery.

I highly recommend this book. If you have chronic illness, autoimmune condition, lyme, terminal illness, whatever, as a woman (and even some of it would be helpful for guys too), you must read this! I can say it’s changed my life for the better.

Ginger Aid Drink

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Having Lyme sorta throws you for a loop. Even when you think you have a baseline of feeling crappy but maybe sort of some stuff you can do, like write a short post and make some food, a day like today comes along and you just can’t get anything done. I’ve had horrible on and off for 24 hours now and the only thing it responds to is Atarax which is an antihistamine which I may as well take because it’s been horrible allergy season. But it makes me very tired.

So I had some other ideas for a post today but I’m phoning it in with this homemade ginger drink. It wasn’t enough to cut my nausea completely today but it helps.

Ginger Aid Drink (sugar-free)

ingredients:

  • sparking water (I used my sodastream to make some)
  • grated fresh ginger
  • plain stevia drops, to taste (start with 3)*

Microplane some fresh ginger into a glass of sparking water. Add drops of stevia and stir. No sugar and ginger goodness. Enjoy.

*if you hate stevia try a teaspoon of agave or just enjoy plain.

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I also spent some time reading by my dad’s garden on this lovely late summer day.

PS: All the sudden my photos are big? WordPress is confusing me! Help!