Tag Archives: Young Adults with Lyme

Choosing Legal Guardians

So, everyone writes a will, right? And, choosing guardians for your kids, you all do it, right?

It is often a sister, a brother, a close friend. People say yes, because it is highly unlikely that both parents will die.

What about our situation? Two years ago we started to get really serious about looking. Robert’s heart was doing bizarre things and I was blacking out with my blood pressure. Then we got caught up in the diagnosis, the treatments and then more diagnosis and treatments and we didn’t want to face the fact that we could both die, and that could was more likely for us than for most couples.

We’ve had a few volunteers for Aidan, but nothing on paper. We’ve had a couple of offers from friends of friends, nearing retirement, but with our isolation situation, we don’t see either of those couples very often.

So, it feels like we are back to square one. Our oldest son is 14, so in a couple of years, and with support from our families and friends, he could push for emancipation, and stay in the house.

We could send them to London to live with their “brother,” but as soon to be newlyweds, I don’t think that would be best for their relationship. Not to mention that fact that grieving the loss of your parents would really suck in another country, even if the people you are living with love you like their own, and you love them the same.

All of my siblings are all old enough to be or are grandparents. Robert’s siblings don’t have lives that would be served by dropping 2 kids into their laps.

I have a few friends who have offered to wash my hair, but take my kids? I can’t even imagine. Maybe the volvo mechanic. Or one of my physical therapists. Their dentist is a nice man, maybe him.

I’m don’t want my kids to end up in foster care because they are too hard to handle, or too medically fragile.

So, what’s a mom to do, except to stay in denial about it, continue to rest to get well (instead of fight to get well)?

That has to be my new mantra. I am going to rest to get well. Allow healing to happen rather than fight for it and push for it. Because I have no other answers.


K. C. ‘s Lyme Story

I’m not completely recovered but I have come along way. This blog is about my journey . I’m 20yrs old now.

I know that Lyme symptoms started when I was 9, but I wasn’t dx’d till I was 18. See the page to see about what I think was going on before I got sick with Lyme and showed Lyme symptoms. I believe it takes having the wrong internal environment for Lyme to even set up shop, a degree of a weak immune system to begin with. So, just see the other page for that.

At 9 I had some lymph nodes in my neck swell up and stay swollen for months. They itched…I couldn’t keep from scratching those lumps under my skin…. We went to the pediatrician, and they assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming and going. Mom just told me that I must have bad sinuses like she does, her sister, and her mom–that it ‘s normal I’m just starting into the pain of it a little young.

By the time I was 11 I was having migraine headaches sometimes. We also began making homemade soap, with all the artificial, industrial strength fragrances. I was the scent mixer…because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often…I chugged along…thinking life was normal.

By 12 years old, I was having pain in my joints, especially my right wrist. I was better than the weatherman at predicting the weather. I would go out and play, but I would have to rush inside because the heat would give me diarrhea with cramping. Down in the south, you don’t talk about the bowel stuff, especially as a kid–it’s not very attractive. I was always content to study, and wasn’t the most physical of kids. I did everyone else’s chores, but wasn’t good at doing my own, LOL. Abdominal pain was a regular thing to me…I never even considered it a problem…just “ow”–and like most kids get told “stop whining….” If your parents don’t think a heartbeat of it…it mustn’t be a problem right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Thankfully Aleve was the only thing that used to touch it…, Tylenol and Ibuprofen didn’t do a thing, and you don’t give aspirin to pre-adolescents…. Those headaches were common…I remember just crying they were so bad. The sound of electronics invariably set them off. As a kid, I hated talking on the cell phone, and had no reason that I knew! I also remember always being cold…I would wear sweaters in the middle of summer, I would be so cold on some days.

I remember how my first menstrual cycle went–when I think of it now, I see the Lyme and hormonal extremes. For 2 or 3 weeks before it I felt AWFUL…..and I mean awful. It was summer, and I was laying on the sofa. Then, the day I had my first cycle, I felt good. I cleaned the WHOLE HOUSE and organized a bookshelf. Mom was amazed. Then I had to use the bathroom and learned, as some would put it, that I was a woman. Within an hour the cramping began….I don’t remember how long that lasted, but it was like the pain was a rope inside trying to pull me to the floor. My cycles were actually mostly regular for several years. But the pain in my pelvic area, at any time of the month–it did not correlate with ovulation–it would be like someone stabbed me with a knife, and it would tear and be so sudden at times that I would go to the floor sometimes, as if I had been pulled down. It wasn’t the same as the summer diarrhea pain I got. That was something I also grew accustomed to.

When I was about 13 I began to just go in my room and have a crying spell for 15 minutes every single day for at least year. It was just to cry…I don’t remember any good reason. I got sick of my crying and dried it up after a year…I was like “if I don’t have a reason to be crying, then it’s wrong for me to be having pity-parties” Maybe that was depression??? All I know is that I did cry for a little every single day for over a year. I remember having nights that I couldn’t sleep, but thankfully this wasn’t too often. My dreams were ALWAYS tense…with strange nervewracking twists in the story. All I heard was that this was the nature of dreaming. I often would startle awake in chills and an inch off my bed when I dreamed I had slipped off of steps. This dream continued until I was 19, and I still have it occasionally.

I think I was 15 or 16, can’t remember, but I basically slept through the whole entire winter. I remember always trying to sit down to read something, or listen to some audio program…and next thing I knew I had been asleep for hours. I wore 3 layers of clothes, and was under 2 heavy afghans and was still cold, basically all winter long. That was the year I didn’t play out in the cold, at all. LOL…thankfully I don’t remember much awful…but I don’t remember much at all. I just remember especially that we were listening to the Audiobook of C.S. Lewis’ “Screwtape Letters”. Needless to say this produced some horrifying dreams!! LOL…but when I was awake, I would be warmer after having slept, and I didn’t really want to go back to sleep. But I would inevitably drift off again. I think I did take spells of needing to just run up and down the stairs…yes run…LOL. But it was at strange hours…11 pm, 1 am, 3 am…those times. Only a few times when the sun was shining.

At 15, I thought it was completely NORMAL to live 5 days out of 7 with a migraine headache: light, smell, and sound sensitive. It would make me throw up about 1ce a week. I was used to every time I went to stand up, having to catch my balance because I would get lightheaded and my vision and hearing would fizzle most of the way out and then come back. By this time I was nicknamed “super-ears” by my brothers who wanted to play video games or watch a little TV while my migraines would make me vomit and I’d be screaming for them to turn the TV downstairs and across the house (which was on volume 1 or something crazy) off… I was told I was being oversensitive and to be nicer to people…I just shut up, but still would fuss sometimes…I didn’t feel good enough to scream too much either.

I could drown the world out with classical music, and I could play my flute. Actually, holding the flute relieved my wrist…but the breath stuff was a slight challenge until I had a good enough diaphragm to compensate for the lightheadedness. Then I discovered opera, and Andrea Bocelli!! I listened to his music constantly–it was definitely obsessive. Aleve did me no good whatsoever for the pain…anywhere. I didn’t really complain about anything but my wrist and my head. Somedays I would lay in bed and feel like someone had been constantly beating my head against a brick wall…and smearing it against the brick, trying to grind to the bone. And if I wasn’t just about to vomit…Only Andrea Bocelli’s singing could ease my pain. If I was going to vomit…I was in for several hours of pure misery, knowing relief would only come after losing my lunch. I did an awful lot of writing on his forum back then too…I didn’t know why it touched me so much. I thought my level of pain was something everyone dealt with. If mine was normal…I didn’t know how others survived “real” pain…but that was something I just “knew” and never thought about.

I remember also being so sensitive to hurricanes in particular…if they were 600-800 miles away, I would invariably lose my voice. The sinus pain was extreme–those days of laying in bed feel like you were being tortured by the mafia. Now I know it was some secretly–renowned Nazi scientist who was inadvertently torturing me, ROFLOL. See Lab 257….Anyway….. I couldn’t wait for the hurricane to get HERE so that I could feel the relief. I remember waking up and telling mom “Katrina just went from a 3 to a 5…I promise you!!” It felt so horrible…she checked the radar and the news…and everyone was talking about how strange it was that Katrina had gone from a 3-5 OVERNIGHT. I knew it, it was miserable. What’s horrible is that the pain let up some when she hit land. Makes you feel kind of guilty…but oh!!!

I still managed to get my schoolwork done, it was a kind of distraction really. I always have been very study-driven… I also delved into studying Italian…I wanted to understand the beautiful language that I had begun singing along with. Thanks to the sinus issues and using my diaphragm for playing flute, I was 16 and could sing not just a decent alto…but sing right along in Bocelli’s voice range now . I wanted to sing soprano but always heard my tinny quality of voice and couldn’t stand it. My brothers got sick of it too…they told me to sing in Bocelli’s octave, for everyone’s sake. LOL, I would spend time in my room a lot, on some days I could zone out of all the noise that was killing me, or overwhelm it with my music. Other days I would watch something with mom.

We began to get wrist braces at Wal-mart for my right wrist. It would swell at random times, and just be in such pain. Both wrists were too weak for me to open a container on my own…I thought that was normal too…after all I was the only girl in the family. No muscle sister to compete with. Despite all this I took drivers ed and did decently well, OUCH on the wrists!!! This was also the year I got interested in health…LOL. Surprising, that is all thanks to my now-LLMD…he came up to our church and gave a lecture on how to stay healthy. I took 6 pages of notes, for a 45 minute lecture! I’m in college now and to date haven’t taken notes that extensive, and I can take up to 3 pages of notes on a sermon if I don’t think too much during the sermon. I began reading health stuff like crazy…and I wanted to change our diet, but my family wasn’t for it. It was “too expensive” to change. Whatever…the time would come.

At 17, I fainted at a funeral…It had nothing to do with the funeral. It was 100 some odd degrees out…and it was humid. But, it is really strange to be only 17, and fainting in this great big crowd of 80 and 90 year olds!!! LOL. Amazing Grace will never sound the same again….they were singing that as I was fighting to keep consciousness. What’s worse is that I succeeded. If I ever faint again…I won’t fight it, I don’t think it can possibly hurt as bad as that struggle of mind vs. body to hold on and stay standing and control how you go down. You have to just let it go… I was still loving Bocelli’s music, and I was learning to cook Italian. I loved the whole Italian culture now. Before this I had only cooked stuff that came as a flour mix in a bag. But I learned I was a good cook and that I enjoyed it, even despite the wrist pain. They would go numb after enough work…the pain would hit the next day or the day after, but it would be numb for a while…so it was well worth it. We were still making soap…I was DEFINITELY having allergic reactions to the artificial fragrances used to make the soap. We had also put a backyard garden together. Most the plants died that year…we aren’t vegetable gardeners, but I did so much shoveling work to make that garden…and went out there to tend to it. I was the only one who did much out there. I was hoping growing our own food would be my way to change things.

At 18, I was sick with my second sinus infection, this was in the fall a couple weeks after my birthday. Mom was on her annual “Let’s change the kitchen around on thanksgiving week!” kick…and I was too exhausted and out of breath to help out except for the little stuff. I was clearing a bookshelf and Dr. Doris Rapp’s “Is This Your Child?” book fell onto the floor. I pick it up…was out of breath, so I sat down and skimmed through. I read the page on yeast allergy…I went to mom and said “LOOK at this, THIS is our problem!!!” I’d been reading Mercola fervently for a year and the answer for me hadn’t clicked. But the single page of Rapp’s book was the first puzzle piece I could do anything with. So we started on the anti-yeast diet on Thanksgiving Day, and I led the battle. I didn’t have much energy, but it ALL went into cooking and drill sargeanting my sugar-addicted family “Don’t feed the yeast colony!!!” I had an answer to something, and I was GOING to get to the root of the problem. This diet helped me tremendously. In a few weeks I had read the tome by Dr. William Crook on yeast…and I was cooking every meal, and making everyone take their goldenseal and I can’t remember what else.

So in January, I was 18, we finally take a trip to my LLMD’s area…and we set up appts for the whole family. Why not support this nice doc, huh? Most of the family was fine…it was me who had the obvious problem. I have one brother with with Lyme as well…we focused on him for a year or so, but he’s not good at following orders. Thankfully there have been some major improvements for him. My mom and the rest of the family were over their yeast problem. I was the one who still had yeast to battle, and mono on top of it. It was there that I learned mono can be chronic. I’ll never forget that day, my doc looked at me and says “I don’t know how you do what you do…” I probably just grinned and said something like “Well, I’m Scots-Irish.” He also had to be careful about how to say that I had Lyme. He had to help me get the yeast and mono under control before touching the Lyme, which often is hard to get through to a patient who is eager to just get all of this stuff dealt with, now…. That was not the time for Lyme…he just said my joint pain was from a bug bite. My only question was why ticks seemed to prefer certain people as compared to mosquitoes liking other people, and fleas different people. See, ticks liked my brother…and mosquitoes and fleas liked me, and it was a different combination for each family member. He said he didn’t know the answer, and said I could look it up and email him. So I looked everything up, wrote him a little paper on it citing my sources and everything, and emailed asking for another project because I liked it so much. It turned into an internship 1 year later!

There is also a really good chiropractor we began seeing. This chiro is great at giving adjustments suited just for what your body needs, and at knowing what supplements a person needs. His recommendations for me have been pretty consistently spot on and benefit rich. We had remodeled our kitchen in June, in three weeks. I was suffering badly from the chemicals, and loss of sleep, and bad diet induced by the craziness, and then we immediately went on a trip for a week to this place that served what I swear is plastic food… I got back home and felt like I was going to have full blown Mono again. The pic the day we got back. That was when the chiro said to use a homeopathic for the yeast, and be sure to continue the homeopathic for the mono as well. In three weeks the yeast and mono were down to being a non-issue.

Not too long after I was doing good clearing up the yeast, in early July, we had a French exchange student come and stay with us, and my friend also came for a week. I hadn’t been feeling the best in my abdomen, having those” take you to the floor” type pains. I had one while swimming that didn’t go away…mom fussed at me for not standing up straight. I hurt so bad I couldn’t stand up straight. I couldn’t stand straight for a week. I was continuing in pain and was having more frequent bouts of it feeling like it would take me to the floor. One time it did. After that I was standing even more bent…I looked like that shot of Mandy in the Under Our Skin film where she coudln’t stand up straight. Mom called the chiropractor because at this point she really was worried this could kill me (family history…her aunt had died at 16 or so of some “female” disease), and the chiro sent me a homeopathic remedy. After taking that, in a few hours I was standing straight again, and had healing type pains…mild, pulsating, warm pain. It took a while for my body to get rid of the junk…but the remedy got me there, and I think the chiropractor saved me not just from the ER, but yeah, likely my life .

After that I thought I MUST be well. I was a little offended at first by Schaller’s attitude in his writing on why Lyme treatments fail, but this I KNOW he has right (among many other good things)…that we have poor judgement as to when we are better or not. We think improvement = cure, but it does not!! See reason 15. Every single little thing, I’ve thought “Ok, I’m cured now! I can live my life…” but thankfully only once have I had to get truly sick again before being called to realize my error. So…I, in my Lymie brain though I was cured (I STILL joint pain and brain fog…hello, LOL) went and spent a week with my friend during her second year of college. It was fun event-wise, but proved to me that I was still sick.

I had a couple weeks to recharge from that experience before I saw my LLMD again in August. This is when he told me…that I had Lyme from that bug bite he told me I must have gotten. The yeast and mono weren’t an issue anymore…we could now focus on “Lyme and Co”. It was really no big deal to me…I just took what he told me to, and was going to see him in January of the next year. I did great on the things he had me start doing. So the picture was really simplified…we could address Lyme now.

I went home, didn’t bother with research on that, LOL. I just herxed a week after I got home, and wasn’t scared by it. It was like I knew that would happen, and was ok with it. I knew I had this internship coming up…I could ask the doc all my simmering questions then, huh? Despite, I think being told better, I thought I was cured as soon as joint pain and brain fog was down a little bit. I stopped taking stuff in early December…I thought that at 19 I was done with Lyme. I’m sure I’d been told otherwise, but hadn’t listened to that part.

I was feeling good from September till mid-January, about 2 weeks into the internship. I had even had my first painless menstrual cycle. Then I picked up some virus at the clinic and felt completely wiped. I didn’t feel bad for long, because they took good care of me. I also knew enough about Lyme now that I had to conquer this thing. I did wonderfully, keeping up with the internship and half-herxing most of the time!! A couple times it would tip over a little far, but I still didn’t miss a day. When I say herx, I mean feeling really slow and icky… Thankfully my only big neurological symptom at the time was brain fog, and one herx where after getting home that night I went and layed down…and just cried I hurt so bad, and my heart gave me a pain and skipped a beat. I could muck through that anyway…I’d lived with brain fog that bad and learned things anyway for years. By the end of the internship, I was feeling GREAT. And I’d come to help others and learn, but thankfully, God blessed me with good people there, and I got help too. It was truly the GREAT feeling that I had NEVER experienced. That feeling was something I became used to, but was still very thankful for.

Once I got back to NC, I applied for a job and got it, and began planning for the schooling it takes to get a doctorate in naturopathic medicine from an accredited school. LOL…in a way, Lyme has been God’s way of giving me a definite direction! Always search for Lyme’s hidden gifts…and trust fully in God. Our contentment must be in Jesus if we want to get through this!

I got bitten again in May’09 and was in a 30mph rear-ender in the SAME WEEK. I got a rash from this bite. Lyme became a new beast… I continued on with my natural stuff and a not-as-perfect diet and actually did ok (though not like I was before my last tick bite) until October. Just asking my LLMD what to do about it right then helped things out, and also I went and saw a naturopath in June who I trusted. He also had me on enough to keep it from attacking badly. I think that stuff would have been more successful if it weren’t for my working in a store and then adding college in the fall semester. I kept the part time job until mid-terms too, but resigned when I was tired of feeling so bad every time I went home after work. I hurt so bad, and felt so crushed emotionally, that I would get home and just cry. I crashed, hard, on finals week. It is a miracle that I left with A’s… I spent the next 2 weeks in bed basically.

It has taken a few months, and 2 more visits to my LLMD, but I know that I’m back on track to getting well. Actually I’ve had a few spells of better functioning in school like I did before I was getting undeniably sick back last semester! And I just got a job…it is something that is a perfect job for a Lymie trying to recover. Being reinfected and having whiplash made Lyme a very different beast. But I’m learning not be afraid of the way it behaves. It is a learning journey…and I will get better in God’s perfect will. I know it is possible!!! This experience will certainly help me better understand patient when I’m a practitioner. So many blessings have come out of it. I do think that if someone asked me if I had the choice of life as it is now, or life without Lyme involved–I would choose exactly the life I have now.