September 2015

September 2015

I went back in to see the LLMD  this month. He had my blood labs back, which my insurance also covered, and told me that I was very healthy. My liver is in okay condition, and I have the kidneys of a small child, which is a good thing.

Then he told me to stop taking my Biaxin completely. He said I had a yeast build up, quite possibly from the prior months of no probiotic and a wealth of antibiotic. He is also sending me home with a blood lab test for Candida.

Many people with Lyme often have co infections like Babesia or  Bartonella. I was lucky to get my prior labs back and have none.

He didn't tell me I had to, but I opted for the Candida diet, in case I do have it.

I am worried about not being on antibiotic, but I cannot be on antibiotic with a yeast build up, so we are looking into Herbalism.

My new list of meds and directions are more rest, Jarro Dophilus, Vitamin D3, Nystatin (I am allergic to Difflucan), Alcornea tincture, and LB Core Protocol by Green Dragon. I hope this doc knows what he's doing.

I'm waiting for the LB Protocol in the mail currently, as it takes ten days to ship. I am not on anything right now for the Lyme, which also worries me.

I have terrible lethargy and pain all over my body from time to time. My hands get tight and stiff and feel arthritic, and I get awful headaches.

My cycle this month was fairly painful, and my sex drive is at an all time low from being sick. I wake up and then want to go right back to sleep everyday. I feel so heavy when I walk.

Each time I stand, my body treats me like I've stood up to fast even when I hadn't. My head gets all rushy and starry.


I tried to eat a stick of string mozz cheese the other night, and it made me very sick. Within the hour I had stomach pains that felt akin to menstrual cramps and diarrhea. Apparently, I have a dairy allergy. Which really is awful, because I used to love dairy and dairy filled foods.

My back is broke out from waking up with fevers and sweating all through the night. It's difficult to make myself do much of anything, I get so tired.

My friends and family keep trying to make plans with me, and I dread them because of how unpredictable my symptoms are. I feel like I'm missing out on the last of my 20's.

I have been able to do some of the shorter hikes with friends, which is always a good outing.

The picture above is from my last hike/rock climb at Mt. Tammany, NJ. This was at the tippy top. :)

The days are getting longer, and time seems to be moving slower. I'm just tired of feeling sick and tired all of the time.

When my anxiety and depression of the situation get the best of me, I have gotten into the habit of stopping myself and staying in the moment, and also, of remaining grateful for the positive things. Grateful-List making days and one day at a time practices are necessities in this thing.



If anyone out there is reading and knows, do you think I'll ever get better? Have you or has anyone you know recovered fully? What was life like for them afterwards?


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August 2015- Meeting my LLMD, and feeling some what hopeful.

August 2015

I finally was able to meet my LLMD, and just in time, as I had run out of my antibiotic stash. 

Lyme had definitely been affecting my anxiety levels. I felt more socially awkward and just weird around other people, even my own family members. 

I started having symptoms where I would lose feeling in my hands or feet, or feel like they were 

falling asleep all the time. I also felt like I was sun burnt INSIDE of my body. 

It was very difficult to be around anyone, feeling the various symptoms of Lyme (which at this point, I was quite sure I had it), and yet looking normal to everyone around me. Maybe just a little tired. 

The thing that made me feel it was Lyme, was mainly the way that it reacted to antibiotic and Samento. The Herx reaction was also a common symptom. 

Some days I would feel multiple symptoms at once, and then all of a sudden, I'd feel fine. I noticed that my symptoms got worse at night. 

I chose an LLMD skilled in  Herbalism, Holistics and Lyme treatment. He met with me for two hours discussing my symptoms and previous trials, and he made changes to my diet and gave me a list of vitamins and antibiotic to start taking. 

He diagnosed me with Lyme via my symptoms, but still is making sure that I take tests to try to see. He also informed me of a possible facial paralysis that I have.I was sent me home with a deal of labwork. 

He told me that with as healthy as I already was, he didn't see why I shouldn't make complete recovery, and be able to live symptom free. Thus made me very happy, and to this day those words keep me going. 

He put me on an absolutely no gluten diet, and I had already stopped eating dairy that isn't raw. Both of those things can cause alot of problems for the immune system, and I had read somewhere that sugar can make the Lyme spread even faster. He also told me to get a probiotic called Jarro dophilus.

I was told to stop taking my Samento and other things and that he never had a patient that Samento had worked for.

He also explained that many of the vitamins on the shelves of stores and such were about only as good as placebos, and we talked about greed and it's control of the populace.

He prescribed me a month's worth of Biaxin, and then sent me on my way, only to meet up with him next month to check out the lab tests and see how I was doing. 

When I started the Biaxin, I had really horrible nausea and diahrrea at first. but then I adjusted. I had a decent rest of August, with a normal period and most of the Lyme symptoms diminished. 

One night, I decided to take my Biaxin two hours earlier than I should have. I started to get a strange metallic taste in the back of my throat and in my mouth, and when I tried to swallow, I felt like it was labored. Almost like something was stuck in the back of my throat. I freaked out, and thought it was an allergic reaction.

Then, I calmed myself and without anxiety, I realized that I could still swallow, and that it just felt like my throat was a little swollen. I took ibuprofen and drank lots of water, and the feeling eventually went away. This experience was horrifying. 

I went on a hike that ended up being longer than I thought it would be, and it was a ten mile hike. That did not mix well with the antibiotic at all. On the seventh mile, I had explosive diahrrea, and sharp, shooting pains in my stomach. No matter how much water I drank, I didn't feel hydrated. It was an awful time. I am still learning my limitations and boundaries with this thing. I set a limit of five miles max. 

July 2015- Herx's, Herbals and Lyme on the Road

July 2015

                                                     (Rio Grande, 2015 cross country Trip)

In the month of July I experienced multiple new things Lyme related. 

I had the worst period of my life. It was so painful I couldn't even move. The PMS was also horrible. 

I also encountered my first Herx reactions after I added herbs to my treatment. The Samento was very powerful. 

My Herx's made me feel like I was going crazy, and then my entire body would tense up. It felt like arthritis was stiffening every muscle in my body. I also started experiencing a zapping feeling in all of my limbs that made me feel like I was being electrocuted. It was very painful.

I had a dull throbbing in my lower back above my butt, and it made it hard for me to bend or walk. It felt like there was a rod there. 

My boyfriend was working out of town, so this all was pretty difficult to manage on my own. 

I started using anti inflammatory herbs and medication. I took Turmeric capsules after studying any know drug interactions, and I took Advil and Ibuprofen which served to be miracle drugs for me, as it made the inflammation tolerable. 

I started getting very anxious and depressed during this month. I was worried that I would end up like some of those with chronic Lyme, suffering forever. I was worried that it would get worse and then kill me. I felt like I was watching my life pass by me. 

I wasn't able to get out much anymore, besides an occasional walk. Exercise is good for the immune system, so I tried to continue with as best as I could. Before I got bit, I was running 5 miles a day easily, and going on 15-20 mile hikes in a day. I could no longer do the running with the Lyme and I can only hike so much now. I felt so limited.

I thought about killing myself a few times this month. That my life was considered done right here and there. I had already had a fairly tough life, and this just added to my plate. I felt like I was just starting to get my life back in order, and then this happens.  

I said at first that I didn't want to go on the road trip my partner and I had planned for this month. I was so sick, and I didn't feel I'd enjoy it at all. I wasn't even supposed to be in the sun on  Doxycycline because it can leave you with an awful rash. 

At the last minute, I told him we should just go anyways, and he promised that if anything bad happened, we'd find a way to take care of it. He made me a nest in the back of his vehicle, equipped with an air mattress and pillows and comfy blankets and stuffed animals, and he put plenty of water there for me along with a bag of my medicines and other doodads to keep me occupied on the long drive. Then, together, we made our way across the U.S.A.

We did what we started to call A.D.D. traveling, where we go from place to place until we run out of time and then have to head home.

(Hiking the Grand Canyon while sick is no fun, but  I did it!!)

 

In two weeks, we visited Chicago, South Dakotah, Colorado, Nevada, Arizona and New Mexico. I was okay for most of the trip. 

There were sometimes I needed to just rest, and I did in the back. I had a couple Herxheimer reactions and I drank water, rested and took ibuprofen and was okay. I was even able to hike each spot without tiring too easily.

Decent food on the road was difficult to come by, and the trip was a fairly challenging one, but we made work, and it was actually pretty awesome. I was so grateful that I was still able to hike. 

                                                    

Me taking in the Badlands, SD for my birthday, 2015,

Lyme, you won't hold me back

 

July continued on after the trip, with the same symptoms and issues. 

June 2015, Taking Matters into my own hands

Once I had returned home from the ER, I delved into research on the subject of Lyme. I started my antibiotic, and my symptoms felt much better. It was the best I had felt in weeks.

I was able to sleep restfully again. I felt incredible nausea and still had some fatigue, though. I believe the nausea was a side effect of the antibiotic.

During my research, I found multiple things that both worried me and  urged me to seek proper treatment. There are so many varied opinions on Lyme disease on the web, it made it difficult for me to piece through it all and sort what was fact from what was fiction. What was the actual truth? Is there an actual truth? Does anybody really know what's going on?

These questions are still not answered for me, even though I had eventually decided to seek professional treatment.

My research told me that it would benefit me to see a Lyme doctor, that it could take longer than two weeks to be treated (some people actually go into remission from the two week dosage), and that along with an antibiotic, I would also need a cyst buster and a biofilm dissolver added to my list of medicine.

Lyme is an advanced disease and it's spirochetes turn into cysts, therefore shielding itself from the antibitoics you are using to wipe them out, A cyst buster will disable this. A biofilm dissolver is exactly that.

I had read in multiple places about something called a Herxheimer reaction. I guess these are a symptom of die off from killed spirochetes. They don't go without a fight. The symptoms of a Herxheimer reaction can be many, and some cases they are fatal and dangerous. Where ever the disease is at in your body (as it roams in every part of you freely) swells with inflammation, and this action cause an array of behaviors including but not limited to convulsions, heart palpitations, loss of the usage of limbs, and in all cases, great pain. Some people don't Herx at all. After reading people's accounts, I hoped I was one of them.

Many of the accounts online are written by people who didn't realize they were bit, and then were misdiagnosed by health care professionals. Some were from people who had waited for years to get treated, many under the impression that Lyme is no big deal and it will go away on it's own. This couldn't be further from the truth.

I started to wonder about people without health insurance, or people without the money for any antibiotic at all. The antibiotic to treat Lyme can only be obtained through prescription. What do people without doctors do?


The two weeks of antibiotic were coming to an end, and I started to worry. I wasn't better yet, and I didn't want the disease to progress further.

When I ran out of antibiotic, I started to feel unwell again. I called my family doctor, and they asked, "Have you already been treated for Lyme?"

When I told them yes, they actually refused to make me another appointment with my doctor, telling me there was no reason for one. I called back and demanded at least a check up, and they said they'd call me to schedule a time.

 Why shouldn't I be able to at least be seen after the matter? Why is everyone so clueless and avoidant on the subject?

It was time for me to start taking matters into my own hands.

I called and scheduled an appointment with an LLMD, but there was a waiting list, and it would take until august until I could be seen.

My partner and I sat down and started brainstorming different ways to obtain more antibiotic since my doctor wouldn't help and it would take weeks to see a doctor.

 I had a sea of friends that sent me parts of their old prescriptions from hospital visits past, but it still wasn't enough, and most of them weren't the right kinds.

We decided to go to Med express and tell them I had not yet been treated for Lyme. And if that didn't work, our plan B was to go back to the ER and make a big stink about things until they coughed up more antibiotic. We had even prepared to threaten them with the test tube of blood I still had on my person if need be.

We went to Med Express, a place where you don't need health insurance but only cash to be seen. The doctor I saw there prescribed me two additional weeks of antibiotic, and my insurance even covered them.

Still, it was all not enough. I needed more.

My boyfriend's mother that sometimes struggles with her autoimmune disease donated me one week's worth, and last but  not least, I had to travel to a hippie gathering where a woman there who has Lyme met with me and gave me 3 more weeks of Doxycycline.

This woman had suffered from Lyme for years.

I was very grateful for the contributions from everyone.

My aunt confronted me, "What if you don't have Lyme at all?"

"It's better to be safe and prepared than sorry. I'm going by the facts and what seems logical. I went for a hike in a high risk area for Lyme disease. I was bit by two insects that carry Lyme. Then I got very sick. It only makes sense to take the precautions."

I started researching herbal remedies, and different ways to treat Lyme food wise, as well. Gluten, dairy and some people even go meat free. No sugar. All organic. Anything to boost the immune system.

I chose Samento, Banderol, Cumanda, Burbur detox all by Nutramedix,  and Grapefruit seed extract for my herbal cyst buster. I didn't use it, though, as I heard GFSE causes a cancellation on the effects of Doxycycline. I chose Serrapeptase as a biofilm dissolver. Armed with these things, I was  ready to try to fight the Lyme on my own.

J,'s mother had sent me a list of LLMD's, but I had already done my own research and found a Lyme Doctor. I was lucky to find one close enough to home, and the prices were high, but not unobtainable.

The first visit is around 500 dollars cash, and then every visit after that is 200 to 300. My LLMD treats with both herbs and antibiotic, and all of those things are pay out of pocket, beside the antibiotic.

By the time I had gotten around to get all of my antibiotic, the Lyme was in my muscles, and I had acquired arthritic symptoms in my limbs and spine. All of the old symptoms were back and even more aggravated.

The strangest thing about Lyme though, is that some days or parts of days you can feel completely fine, only to return to the thick of symptoms moments later.

I was armed and ready to fight.

June 2015- The Emergency Room

The Emergency Room

I walked in to the ER at 4;30 pm. I told the woman at the desk to sign me in for a tick bite. I told her that I had been having some weird symptoms after the fact, and they asked me to have a seat.

I brought a book. King Arthur and his Knights of the Round table. I noticed I had been having a more difficult time than usual reading. Concentration was hard, and everything around me seemed so loud. 

A lady sitting next to me complained that it has been three hours now that she had waited to go back. 

Two hours later, they did my vitals and asked me questions at the triage station. The nurse was a younger man, and he asked me how long the symptoms had persisted, and where I had gone hiking. 

When I told him the Midstate Trail, he said that he biked there all the time. Then, he said that his house was quite near it as well, He asked me to try to explain to him specifically what part, I told him which area. He said his house was right next to that entry. His eyes looked concerned. 

"Good luck," he said as he ushered me back out to the waiting room, "I hope you get better quickly."

It was nearing midnight before they led me back. 

The doctor was a little Indian man, and he automatically insisted I get a vaccination for Tetanus, because I couldn't remember if I had mine done or not. Come to think of it, I was having a hard time remembering much of anything. 

"I promise you, you cannot have Lyme disease," The doctor said to me.
"How would you know without testing me?"
"Because the incubation period is not in a week."
"It's been nine days now."
"It is not in nine days."

He told me that he was going to write me a prescription for 100 mgs of Doxycyline twice a day for ten days, just to make me feel better, and because I live in a high risk zone for Lyme disease.

"Is that all it takes to cure it? Ten days? And what's the point of prescribing me them if I can't possibly have it?"

He told me yes. That it was a simple viral infection, and that I was free to leave with the prescriptions, to which I asked,

"Aren't you going to at least test me for Lyme disease? Or possible co infections?"

He explained to me that it would not matter, because it would not show up that soon. I explained to him again that two weeks didn't seem right to me at all. That a longer treatment might be needed. 

He asked why I was so anxious. If I did have Lyme, it would be gone after the ten days..He seemed completely puzzled. He didn't know why I kept questioning him further and why I was so worried.

He assumed I was being racist, and started explaining to me when he came to America and that he had schooled here, and that he had a daughter my age. 

"Do you think I would lie to you?,' he asked me.

"You'd be surprised," I blurted out. 

There had to be something to this. 

I said, "There are other things that can be transmitted through ticks into the body. Like Colorado Rocky Fever and stuff. Aren't you going to test me for any of those things?"

He looked annoyed,but he said that we could do the tests. They drew many vials of blood from me, and I waited to hear the results. They said they all came back negative. That I had no infections.

"Well, if it isn't Lyme disease, and it isn't one of those things you just tested me for, then what's making me sick?"

"I don't have all the answers," he said, "and I never said you don't have Lyme, but I don't believe you do."

Before I left, I decided to make my bed for some reason. I grabbed one end of the white hospital blanket, and waved it in the air to fold it, and out from its center fell a vial of the blood they had said they had taken for tests, after they had assured me everything would be fine.

The vial from the hospital, right after I found it...

 

I grew very upset.

What if this was the very vial that contained the answers to my malady? 

I put the vial in my bag, and then I walked quietly out of the hospital and waited for my ride home. 

June 2015- The Symptoms Start

June 2015- The Symptoms Start

For a week after my hike, I noticed gradual differences. I felt dizzy and sick to my stomach, but I attributed those feelings to anxiety, which I am prone to. Then, I thought about how I had partaken in moss filtered water from a mountain spring coming out of the hike, and wondered if any of these ailments could be contributed to that. 

I felt increasingly worse as the days went on. My nights were so restless. my body didn't want to fall asleep, and I'd have horrible dreams. When I'd wake, I'd be so tired. I felt like I could sleep for days. 

I started getting motion sickness on the bus, and I also had feelings of vertigo. I would just not want to do anything. I had no motivation to do much of anything. 

One night, about a week after my bite, I noticed my lymph nodes had become sore and slightly swollen, both in my throat and beneath my arm pits. I would wake up feeling so sore and I started having mild fevers. 

I hadn't seen a red rash though, so I figured it wasn't Lyme. I wish I had known then what I know now. 

The sore lymph nodes and body is what really alarmed me, so I started to do some research. 

It was the eighth day after being bit that I realized I had all of the symptoms of Lyme and pieced together that this wasn't some kind of summer flu.

My research led me to places like Lyme Net and Tired of Lyme (both good resources for Lyme everything btw) and all had indicated that a red rash did not need to be present for there to be disease. My anxiety sky rocketed as I read all of the truths. 

I posted on my social media about my symptoms and thinking of going to the ER, but that I wasn't sure if it counted as an emergency. I was so very unaware.

J.'s mom contacted me, and she told me to get to the ER, as soon as I could. Time was of the essence.

Multiple others also communicated to me to go, and one of the others was a woman with Lyme, herself. This all convinced me, and I responded urgently to their advice.

I hopped on a city bus, and the motion sickness made me so sick. 

I started talking to the bus driver. I asked him if he had ever heard of Lyme, or know anyone that had it before. I needed some familiarity. Someone that had possibly been through it all before. My nervousness was exhausting. 

The bus driver turned and said to me, "As a matter of fact, my daughter has it."

Relief washed across my face for a moment. Someone who maybe knew what was to become of me sat in front of me. 

"They treat it with antibiotics, right?"I pried. 

"Yeah they do," he said, looking a little wearily. 

"So is she okay now? How long did it take for it to go away?"

"Well, it never really goes away," he responded. His voice trailed off as he pulled off to the side of the road. It was my stop. 

My heart dropped as I exited the vehicle. 

I'll be sick forever? I'll feel like this always? So many thoughts had crossed my mind. 

I walked the two blocks to the ER, glad to be off the bus and on solid ground. 

Strawberry Moon 2015

My friend J. and I decided to put on our gear to hike down onto the Mid State Trail to camp. The June day was warm and lovely, and we had decided to firstly go strawberry picking in the woods, as it was officially Strawberry Moon and we wanted to celebrate.
The two of us had been foraging all Spring, and were excited to get a small forage in for berries and greens.
To our dismay, there were no berries yet. Either that, or the deer had gotten to them already. We lumbered on empty pocketed to the woods to set up camp.
When we arrived, we made a decent shelter out of light weight tarps and bedding, and then we both took up posts either collecting firewood or setting up lines for fish.
Both of us wore long sleeves, pants and bug spray, as J. had been afflicted with Lyme disease some years prior.
J. went through a series of doctors that told him that he didn't have Lyme and that he was crazy. They told him his symptoms were all in his head. This was after he was treated once with antibiotic. He had been camping and the tell tale red, circular rash had radiated from his buttocks.
He continued to try to seek treatment after he was treated, as he still had symptoms. His back got very stiff, he had fevers and he also had a severe meningitis type effect, He was in a deal of pain and never saw an LLMD, but went through an array of tests, including a botched spinal tap,
 At one point, they even drew his blood and told him his test came back negative. A friend of his mother's also drew his blood and tested him for Lyme, and it came back positive.
He still suffers from the effects of Lyme and hasn't been properly treated, and his awful experience was a reminder to me to always be vigilant and check myself on outings.
After the firewood was collected, I tended the fire and started to prepare the meat I had brought down in a skillet, and he went to the woods to bring me back edible greens. Handfuls of Wild garlic mustard, Wild Violet and Stinging Nettles were handed to me, and then I cleaned the plants and prepared a rustic feast of greens, rice and meat.
We ate that night and watched the fire. We shared memories and talked deep into the night. The full moon's light reflected down on us through the trees and we put the one strawberry we had found the entire time out into the fire as a type of offering. We eventually fell asleep to wake up to a morning full of sunshine and camp chores,
I made breakfast, and then the two of us decided to scout the woods.
There was a field of purple and black butterflies both landed and hovering sweetly, and I was lost in the beauty of their appearance. They gave the place a very fairy tale/ethereal touch, and I watched them as if in a trance, as I was caught in their spell.
As we walked on, we saw a row of dead paper birches, and the entire path was covered in Wild Violet.

Onward still, we heard a rushing of water, and followed the sound to two beautiful rapids and a small series of falls. It was an oasis nestled in the center of the green. We both climbed on the mossy rocks and looked at the running water. The small falls emptied themselves into a large lagoon. The sun peaked through the trees, and glowed across the surface of the liquid. It was all very inviting. So inviting that we had opted to jump in to cool off.

As silly as it may be, I stood on the mossy edge of a boulder, peering down into the water, hesitant to jump in. I was 28 years old, and had never jumped into moving water before. There was always some sort of mental block in it for me, and I still couldn't tell you why I had never done so before.
I couldn't to do it.
I thought about my hesitance. Not just on this time, but on others and with other things. What was this feeling that rendered me immobilized and frozen? It was in many aspects of my life, both physical and emotional.
I had to make myself jump in.
My mind raced to thoughts of things like baptism and rebirth, and I made a vow to myself to not leave that place until I had jumped in, This leap would serve as a symbol of a rebirth of self of sorts, and I would complete it.
J. had already jumped into the pool twice, and was most likely becoming irritated with my ceremonious musings.
"Just jump in!," he shouted to me from a rock at the bottom where he had perched and waited for me.
And then, finally, as fast as I could, I let go.
I lept off the rock and I faced the symbol of my anxieties to be hit by the paralyzing cold of the crisp mountain water.
I could hear J.'s voice in the background as I went under, "You're doing it."
I rose from the waters with a great belly laugh and a much lighter feeling. I left my transgressions in the pool behind me.

The two of us got dressed, and talked about coming back down for Summer Solstice and inviting others to this magical land. We started collecting firewood and got back to camp to make one last fire before we would return to town.
I was in the process of changing my old pants at the campsite, when I saw there was a tick on my arm, gorging itself on my blood.
"Get this thing off of me!," I yelled. He pulled it out of my arm. He said it wasn't a deer tick. I now know that concerning Lyme, it doesn't matter.
He checked the rest of my body, and he found an actual deer tick on my leg.
If I wouldn't have jumped into that pool, it would never have washed off my bug spray, I thought.
The lesson underlying, I chuckled to myself, was that while you cannot live life by avoiding life, each time you open a new door, it creates an entryway for both positive and negative experiences to come in.
 J. said that neither of them looked very engorged, so they couldn't have been there that long. He pulled the deer tick out of me.
I asked if I should go to a hospital. What should I do. He told me to keep an eye on it for a couple of days, and watch for a rash.
Afterward, we packed up to go and hike the four miles out.
We reached the car, and I felt sick and dizzy. I blamed it on dehydration and the heat, and carried on into my night.
I felt like something wasn't right in my body.
I played in my mind that I had been cursed by something in the mystical wood, and it left me feeling dizzy, nauseated and fatigued.
The symptoms were subtle, and I paid them no mind.