Lyme Files: The Paper

I brought a print out of this running tab of things to every doctor I saw starting in 1998. It took a lot of effort for me to do it - physically. As I got sicking, remembering and thinking and all this was a huge effort.

I did it so when I saw a new doctor, I could sit there and breath and not think and not talk and just let him or her figure it out. Normally, they wanted to ask me and talk about it. Maybe some where testing to see how much I was lying because if I couldn't remember everything, it was a lie.

You get good at. . .stuff when you have Lyme.

I continued to keep it updated when I could to outline what was happening. Since I lost most of my memory in places, I needed to have something to leave for myself. This was the last copy of it which was around 2011.

I did not edit or change or correct anything within this text, just bold the dates.

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Personal History:
I have had no traumatic injuries, never broken a bone or been to the hospital. I have never had surgery. I have never been abused (emotionally, physically or sexually) or under any severe pressure. I do not suffer from depression or anxiety or any other chemical imbalances. Blood tests do show I have a high bilirubin count (Gilberts disease, a benign familial disorder) which is also present in my father and common for my background.

Pain:
Mostly in soft tissues, tendons (etc) not in any joints. Pain is dull, achy, stabbing and/or grinding ranging from the typical “board line” annoying pain to severe enough to make me nauseous. Nothing is consistent. The pain is not centralized and I cannot pinpoint on exact spot that hurts or where an injury might be. Places that hurt one day, might not hurt the next day.

I found a shower can reduce a lot of the pain for between 20 minutes to 4 hours. Heating pads do not work, however. I find no correlation between my activities and pain or pain reduction. On average, any physical activity will cause wide-spread pain but there are times when this is not true. Since winter 2006, I have had more cases of pain after a walk or mild physical activity.

Typically, pain is in the shoulders and neck and “travels” down both arms with stinging or constant ache in one or both of the biceps, triceps or forearms. I have pain on the front of my shoulder frequently. I have difficulty holding my arms up/out and sustaining a reach for an extended period of time. I will get stabbing pain that goes away in at least 24 hours in any one of my fingers or wrists.

I can have pain in my sides that hurts when I touch my skin and even clothing hurts against it. I often get pain in my lower ribcage and occasionally in my sternum. Sometimes it hurts/is annoying to breathe. Pain sometimes centers on about where my bra strap is but will “spread” all around the back. Since September 2006, I have had very localized pain at the base of my spine - or what feels like the base of my spine.

I have always had pain in my right knee, I am not sure if that is related or just the way I sit (leg curled under me). I get pain in the front of my lower leg, right in the middle of the bone - it feels like and a dull pain in the center of my thighs.

I have pain in my hips and buttocks that normally comes quickly and goes away. I tend to get a sharp pain behind the knees, as if someone took a knife and cut a straight line behind them. Again, this pain tends to come on quickly and won't last for more than a hour or so.

More occasionally, I have pain on the tops of my feet and jaw. Since December 2007, I have been getting headaches that either are annoying (last about 1 week) or make it so it is impossible to move my head without severe pain, dizziness and sensitivity to light. (lasts about a day - I have been told these are not migraines as a migraine would be debilitating.)

When in pain for a few hours (typical) I do have fatigue/exhaustion that can be both physical and mental. I am more absent minded or unable to retain information after a conversation. Eating, sitting down or doing something physical does not help. I just “stare”. I have limited my personal activities because I get to tired to go out with friends. I do have moments of dizziness which I attribute to being clumsy, and headaches.

Conversely, I have times when I can engage in normal activities and suffer no adverse reactions. Sometimes, the pain can be delayed and “hit me” all at once later in the day or a few days later.

Family History:
No blood relatives with any abnormal health problems. My father's brother has Psoriasis and shingles and my mother's sister had breast cancer. Other than that, family members have lived long, healthy lives.

The Outline:

Around 1996:
Begin to experience pain in left thigh and right shoulder. Theorized due to archery and horse-back ridding activities. Began to notice when I would go to sleep, when I closed my eyes the room would be spinning. Dr. Walker, my primary doctor, indicated nothing was wrong.

Vision deteriorated at a more rapid rate. Eye doctor found nothing wrong, just updated prescription on a yearly bases. Gave up archery since I could not see the target.

From about 1998-2005:
Saw Dr. Walker about pain in my arms, fingers, elbows and wrists. She diagnosed me with tendinitis. She prescribed Relafen most of the times I came to her with pain complaints. I used heat compress, refrained from using the computer and lifting weights and used wraps/braces for stability since moving my wrists hurt. I assumed I was prone to tendinitis because I would not have to do anything stressful to acquire the pain. Pain reoccurred about every 5-6 months to varying degrees – I did not see a doctor every time I hurt.

Gave up other activities due to pain. Continues to go to gym for running/weight lifting. Would sleep or puke/dry heave after workout.

September 2005:
Went to Dr. Walker with severe pain in arms and shoulder. Predominately, my left shoulder. The conclusion was that I have a very badly pulled neck and shoulder muscle since I had been working out and lifting weights. She gave me a muscle relaxer to help with the pain/healing explaining I am young and healthy and with a little help should recover.

About the tendinitis, brought that up and told her I have tingling in my left arm and knuckles as well - she said it's tendinitis. She told me to research and see if I wanted to take Glucosamine and Chondroitin Sulfate to help. (I took it, nothing changed).

October 14 2005:
No improvement in pain - I went back to Dr. Walker to figure out what's wrong with me. I told her it is also getting a little tight to breathe and that the pain had moved toward my chest. I told her I had to wear button down shirts because I could not lift up my arm at all. She was shocked I was still hurting from the “muscle pull”. She gave me another muscle relaxer to take during the day and prescribed Physical Therapy. She thought it could also be bursitis and once I was in PT, if I could pin-point the pain, they could give me an injection.

October 25, 2005 – November 29, 2005:
I went to PT at NovaCare and they evaluated me: I had no mobility in my shoulder/back and lots of pain. They began a routine. I did not notice any dramatic difference in my pain. I did not hurt more in doing the exercises (I had been warned I will “get worse” before I get better).

My evaluation when I was finished with PT:
I got back some mobility and could shower/dress again normally. However, the pain was still all over the place. They theorized it might be a nerve issue. The PT guy said, it sounded like I had irritated some cartilage, pinched a nerve and pulled muscles. I told him, my other shoulder is starting to hurt just as much. They suggested talking to Dr. Kevin M. Walsh (of Orthopedic Specialists) for more follow-up.

Dr. Walsh x-rayed both my shoulders (I went more than once). I got x-rays and he found I have Type III Acromion and right shoulder calcification on the rotator cuff. The x-rays showed no bone damage. I was told I would just “be in pain” and other than surgery there was nothing that he could do.

Continued with the pain.

June 26, 2006:
Went to Dr. Walker again because the pain was moving down my back, arms and chest. I told her nothing helps medication wise and this cannot be normal. She agreed what was “tendinitis” could not spread around the body. She said to try some anti-inflammatory medications – she did blood tests for Lyme's Disease and suggested Fibromyalgia.

I had two blood tests done – my bilirubin was high, nothing else unusual. She tested me for other signs of infection, lupus, MS (etc) and Lyme's Disease again. Everything was normal.

July 17, 2006:
Per Dr. Walker, went to Dr. Armin of Havertown Family Chiropractic for services to make sure the pain wasn't my spine being out of line. After three treatments, Dr. Armin determined it could not be my spine because I would be feeling better. He suggested seeing a rheumatologist since there was nothing wrong with my spine or bones (no point in seeing an orthopedist again). He had suggested I try a large dose of vitamins for a month to make sure the pain was not related to me not getting enough nutrients. I tried this, no change.

August 21, 2006:
Went to see. Dr. Thomas Whalen of Whalen Rheumatology Group in Havertown. He ordered full X-rays and a DEXA bone scan. He was not forthcoming as to why he ordered these tests or interested in hearing anything about the pain. He said I could have a sleep disorder but the tests would tell him more.

September 7, 2006:
Returned to Dr. Whalen, all tests came back normal. Personally, got the feeling I was wasting his time. He had not looked over the test results beforehand and seeing nothing abnormal on the reports, thought I was just “out of shape”. He attributed all my problems to one leg being longer than the other. When I told him it sounded weird that my shoulder and arms hurt because one leg is longer than the other, he prescribed Prednisone for three weeks telling me that the only other alternative was exploratory surgery.

I saw no change in pain until after I was done the Prednisone. During the time I was taking it, I felt no different that I had before – occasionally having a “good day”, but, the pain would return. Once I was done the medication, I was feeling better for about two weeks – I was able to work both my full-time and part-time job, no unrealistic energy loss or a lot pain. (A two week period without any major pain is a long time for me). All symptoms returned about three weeks later and returned to full force about four weeks after I stopped the Prednisone.

December 2006:
Memory noticeably suffering. I could not remember having conversations a few seconds after having them. Misplaced objects frequently. On one occasion, I repeatedly opened and closed the same drawer while trying to find the garbage bin.

I had an appointment with another rheumatologist Dr. Pierre Minerva of Bryn Mawr Hospital. Since I had no medical insurance, he wanted to hold off on any testing. In the meantime, he prescribed Tramadol and gave me samples of Lidoderm (Lidocane patch) and Skelaxin (muscle relaxer). I found no use for the patch or Skelaxin - took the maximum dose of the Tramadol before I found relief and the pain was minimal/gone. By the beginning of February, the effects had worn off and the pain returned.

January 26, 2007:
Returned to Dr. Minerva. He had spoken with Dr. Walker and taken many notes on my medical history and situation. He said he did not know what was wrong with me. Since I was responding well to the painkillers, he prescribed a months worth to offer me relief. He said since the only symptom I have is pain, I do not fit any diagnosis. He said many things were fibermalgia-ist, but, I am missing key symptoms. He suggested ankylosing spondylitis or something in the spondylitis family, again, all my tests were clear. He told me to come back in a month.

February 17, 2007:
Talked to a neighbor/doctor about symptoms and asked for possible advice. He suggested something in my neck and then advised I see a neurologist. He said he didn't believe it was an infection since “something” would have happened by now (either better or worse).

March 20, 2007:
Met with Dr. Chris Reid (Bryn Mawr) a neurologist. After an exam, he said he could not find anything (or anything to indicate) neurologically issues. He suggested a sleep study and possibly physical therapy in the future. I did mention I had tried, believed the practitioners were good, but found it useless.

March 23, 2007:
Saw Dr. Minerva. He wrote a prescription for physical therapy and suggested someone who deals with chronic pain issues. (couldn't actually read the name or phone number, or anything on the paper). Began to have issues in the shower - when washing my hair I would fall.

Sleep study. Test results were returned about a week later showing nothing abnormal. (Even though I actually did not sleep).

April 2007:
I have a sharp pain in my chest and difficulty breathing. I linger until about 11 trying to figure out how to get better. I took aspirin, cough syrup and Maalox. Nothing. By morning, it's not much better. Still go to work. My heart feels like it is racing all the time.

I wonder how my parents will deal with me dying because I don't know what else I can do. No one will help me. They say it's in my head. I don't know where else to go.

May 2007:
Passed out at work. Mom came to get me. Unable to make it up stairs without taking two breaks. Horribly weak, joints unsteady but unable to sleep. Difficulty breathing become severe enough to impact activity.

I stopped walking up (or down) stairs and ate as little as possible as it exhausted me.

I forgot how to use the turn signals in my car. Vocabulary significantly reduced - I cannot find the words in my brain. Also, unable to touch type when I could do it since high school.

May 13, 2007:
Went to see Dr. Burke on Wednesday who is the Lyme disease specialist and happens to HAVE Lyme. Ironic. He is very, very convinced I have Lyme disease. I gave some blood and that will take three weeks to get back. It is the Western Blot test.

The ELISA blood test, which I have, weigh anti-bodies. The Wester Blot test actually looks at the anti-bodies. That's how Lyme "hides".

Dr. Burke ordered a brain scan and heart ultrasound, as well, to check for other tick-born infections and potential damage being that I have HAD the thing for circa 10 years.

It's a little strange the two hour talk we had. Apparently, a lot of my personality and quirks might just have been Lyme. A lot of my habits are me just compensating. . .? I'm not actually potentially absent-minded and bad with names and people and conversations. . .I'm just sick.

I hope it's Lyme because stuff he told me sorta matches up with the new, strange and somewhat frightening symptoms I have been having. For the las month I thought my contacts where in the wrong eyes (FYI: I have a separate prescription for each eye, apparently, some people have just one?) and my knees have stopped hurting like the use to but stopped moving. My right one, especially. Then they got weak - my body got weak and I got exhausted. I almost fell asleep at my desk and no amount of caffeine or cold water could get be awake. I have developed a cough over this last month which is like me trying to itch something in my chest without anything being there. . .that's a sign of the bacteria attacking the heart/chest. Hence the ultrasound.

Friday, driving home, I almost passed out. I got home ok but I spent the day on the couch and the world just feels like its swimming around me. If you look at something and then start shaking your head every so slightly but quickly to the right and left, that's a pretty good perception of how the world looks to me. I mean, it doesn't MOVE but, that feeling that things aren't right. . .things closer a mess. .hard to figure out. . .things far away. .well. .I can't see them that well but they are nicer and less distracting to look at. It's like being drunk and unable to focus.

Anyhow, these seem to be common with Lyme. So, depending on what 'netter you want to believe, I could have stage 2 or 3 Lyme. I probably contracted it a little before I was 18.

Results of Tests: The blood test showed severe, active Lyme - and the SPECT showed so much infection in my brain, there was no room for my brain to go which had been causing the headaches and other issues, My heart was working at about 60%, with a very damage valve. A stroke or heart attack was possible at anytime.

June 14, 2007:
PICC installed on my arm. I have a bag of IV antibiotics to give myself a day. First infusion, at the office, made me feel better. A little drunk, occasionally, as well.

Later: feel horrible. Worse than before. The doctor explained this is Herxing (Jarisch-Herxheimer) which means the bacteria is dying faster than my body can flush it from my system which creates a toxic system and more pains.

July 2007:
Began a two IV bag a day treatment. Began puking.

End of July, able to attend family reunion. First time out in years.


So, apparently, the Lyme is in retreat. The toxin level has dropped, the antibodies are up, my dosage has increased to "puke-tacular" levels. . . 600mg

I have Bartnella and Babieosis. A parasitic infection or infestation or whatever. It's like the American Malaria. There are two drugs, I was told, that treat it. I'm on one. If it doesn't work, we are out of ideas.

I am going back for another heart ultrasound to see if the breathing problems I have been having is related to heart damage or the parasite which likes to attack organs.

Apparently, if the thing isn't killed, it can actually protect the Lyme bacteria making it resistant to antibiotics.

Hence the increase in dosage and me wanting to puke a lot.

September 2007:
Have bad fever, temp of 104. Recover.

October 2007:
PICC pulled!

I have actually tested negative for Lyme ('cept on the ELISE test, which really doesn't count) and negative for the co-infections although I have some clinical symptoms. However, my antibody level has dropped significantly from a month ago – that indicates an "exhaustion" in my adrenal system so I need to have some hormone tests done as well as a stress test to see if I need additional therapy. I will also need pain therapy (in the form of a couple one-time non-cosmetic botox injections) in my back.

I, unfortunately, have to have the tests done in the doctor's office rather than after hours or on the weekend.

November 2007
I'm exhausted and my legs hurt. Doc said probably do to the bits-n-pieces of dead critters floating around. My endurance still sucks.

Stress test showed heart beating slower than normal. Blood pressure low. Infection in brain was almost gone.

December 2007:
Weened off drugs due to progress. Do to brain infection, I have lost many many memories from about 1996 to current. Have difficulty with transmitting information from short-term to long-term memory.

Parasites are still lingering. While the blood came back negative, I still have pain and rashes. But, I can work out. Last week was long and very painful.

Weight up to 160 (fro 140) and I have a constant headache. Nothing works to get rid of it.

January 2008:
My head is starting to hurt, feels heavy. I want to be able to prop it up somehow. If I could take my brain out of my skull, it would be better.

I am in relapse for Babesiosis which has been causing a massive resurfacing of symptoms coupled with a phenomenon where as my body recovers from the Bartonella and the Lyme, I actually have a quick but substantial revisit of the original symptoms that last about a week.

Additionally, I am having difficulty maintaining my stress hormone level (Cortisol), which is super-fun! So, I am on some light hormone therapy in hopes everything recovers, some new meds for the parasite and increases in the old meds.

Needless to say, I have to go back in another 4 weeks to go over more blood work - so I made an appointment. Please let me know if this interferes with anything and I can change it. I tried to make it as early as possible in the day.

Began dry-heaving regularly. Had two black-outs where I was functioning fine to the world but unable to remember how I ended up where I was. Back on triple meds and hormone therapy.

Feb 2008:
My period was 10 days early due to hormones. Dry heaving again. Feeling frustration, longing and all around unease.

March 2008:
Good news - my hormones levels are happy and being produced well enough to be used for their primary jobs as well as their secondary jobs. I have slight hypothyroidism which should clear up on its own hopefully withoutadditional treatment. My immune system as a whole is back, looking very non-exhausted and communicating well with that whole system.

Bad news - both my parasites are back and they have infected my brain again leading me to have worser-than-normal memory issues/black-outs. In laymens terms, they have hit my input processing centers (memory, basically) but not my output processing centers (communicating, basically). Both are resistant to the 15 pill-a-day treatment I am on so, we're stopping treatment.

Tomorrow, I start up with a series of "rescue drugs" which are not widely known/used drugs since they are only in severe cases to prevent any drug-resistances in the population in general.

April 2008
The doc has decided the parasites have gone cystic. This means, they have encased themselves in thick walls of protein that are very hard to break down and are floating around. Good news is this is a sort-a remission but they can live like this well after I am actually dead and reemerge at anytime. They can cause problems. .as any foreign body bouncing around the system can. However, this does means I can be pulled off medications used to kill the live/active parasites.

I still have several "troubling" neurological systems (like randomly falling over) so the doctor wants to do some more brain scans to see exactly where the damage from the infection is. If it's anywhere near the central brain, that's another round of treatments/therapy that will be needed. My heart is beating fine, I had an EKG, it's just beating slower than normal which is. . .what it is.

I still have fatigue and pain so I am being pulled off all but three medications to see what issues are being caused as side-effects of the medication and what is related to damage/sickness. The doc would like to do a nerve test to test my pain receptors.

My blood work is looking good, other than my body storing anything I eat as fat. I still have to take it easy because too much "stress" will throw everything off.

May 2008:
Removed off some meds, added others back on. Parasites are cystic (classic remission) but have the potential to become active.

Still having issues standing without falling over. Very apparent when tired. Doctor decides it is necessary to test for brain damage from infections.

Tummy better. Dry heaving almost non-existent.

June 2008:
Had more testing. Lacerations in brain determined to be in the central brain and memory retrieval areas. Memory might heal with "use", central brain much harder to heal and might not recover.

Masses on thyroid found, determined to be benign (goiters) and medications added to try to shrink them rather than go into surgery.

Began belly dancing classes which is pretty awesome.

July 2008:
Extreme fatigue and mood swings apparent. Feeling very, very sick. Doctor removed me from thyroid medication and sent over additional request for blood tests. Dry heaving beginning again, mostly in the morning.

Big toe on both feet have strange painful bruises although they have be subjected to no trauma.

July 18, 2008:
Blood work finally looking better. If it continues, I can be weaned off medications. I have a 10% chance of having a Lyme relapse but higher risk for the Bartnella and Babieosis.

I still have a low-grade air-hunger making it feel like you are slowly suffocating.

The bruising is a result of infection in the veins and can happen anywhere. Possibly the eyes. It's not serious, just a painful bruise from infection in the blood.

I need to get another SPECT scan and heart ultrasound since the Bartnella can cause heart damage after the infection is under control. It's the "favorite" organ of the parasite.

ALSO. . my father found a tick on him and while he had no symptoms, he went to see Dr. Burke and tested positive for Bartnella. He will be having a SPECT scan as well. Dr. Burke found another tick on him.

August 7, 2008:
Feeling really sick, dizzy and exausted. Called the doctor to leave a message for him or a nurse. I got a call back about 10 minutes later saying the doc wanted to see me at 4pm.

30 min before my appointment, it is canceled.

August 8, 2008:
10am, got another call from the doc to come in at 2pm.

Finally get to see the doctor. The herxing of the barnella is out of control causing the feeling of wanting to puke, vertigo and RAGE. He took me off everything but Rifamptin and Larim and added a detox supplement, glutathione.

My brain scan is not in yet, he will call with the results as soon as he can find/get it.

Talked with two people with Lyme at the doc. Convinced one to stay. He is ready to sue his insurance company since the Lyme infection is destorying his vision. It's a double whammy since he is self-employeed so he pays for his own coverage and now his own treatment.

Also, my Uncle was diagnosed with Lyme. Maybe he has had it for a few months, he spent one of those days in the hospital with bad heart palipatations when he thought he was having a heart attack. They don't want to go to my doctor, the drive is too far. So, without a LLD, we'll watch him get sicker and die. He has 30 days antibiotics, per the normal.

September 19, 2008:
I'd like to welcome special guest Cindy to the doctor's lab.

Finally got my brain scan results! There is still infection which is making some cognitive issues and dizzy issues. The doc told me to take a suppliment, Acetyl L-Carnitine, to help with rebuilding my brain.

After going over the blood work and everything, he has decided to give me a new medication in place of the Mefloquine called Alinia (nitazoxanide) which has less side effects (PHEW!) but has proven very effective in all 22 patients he has prescribed it to.

In my reflex test, my toes FINALLY pointed down. Can't be that. I have no swelling of the noids (though some tightness a couple days last week). I'll get my new meds on Monday. I am also back on the Dapsone. Overall, not a bad appointment., I was at the office at 8am and saw the doc around 11am.

September 28, 2008:
After a week long headache, I ended up having heart palpitations and a lot of "rubbery" fatigue. I called the doctor and he was convinced it was herxing, but, told me to stay off medications for two days.

October 15, 2008:
SURPRISE! Forgot I had this appointment until Stacy told me. Opps. I forgot to get my bloodwork done, too. Ooops. Either way, the concern was for my heart because of the palpitations and occasional chest pain. I have two appointments set up for a heart scan and follow-up. I am showing some light signs of Bells palsy but it is very faint. I am having spontaneous deafness/ringing in my left ear and my one eye is "lazy". .on the left. It's a good time.

November 5, 2008:
I can tell you how sick I have been feeling - and when I say "sick" I mean dry-heaving, waking-up-due-to-pain, not eating, exausted, worse flu when you are car sick sick. I have some inflammation in my eyes, mostly in the left, which throws off my perception and makes me nauseous. It also gives me headaches. The rest is just die off. . just? Yes, you aren't dying, it just feels like it. However, due to the amount of toxic stuff, I am take a two-day a week break from medication. That should help.

My heart is in good condition. I have the same valve problem as before. But, it's not worth treatment. The damage might be permanent, but, it's not life-threatening. There is no excess fluid around the heart sac, either. *phew*.

November 18, 2008:
Actually got in to see the doc quickly today. I have been feeling pretty anti-social, hurty and blindly. . tired and. .sick. So, we talked about my special drug combo. It was nice to hear him say "I've been through this and survived and you'll get through it to."

As number 23 (or 21 maybe?) on the Alinia, and one out of three at my doctor's office, there is some issues with finding the right combo of drugs. Right now, it's probably a little too much. So, some of my meds have been reduced.
I have to check in with him on Friday, which will lead to one of four options:

1. Nothing happens. Life goes on as normal.
2. I need to see a Lyme-approved nuro-eye doctor (he's in Lancaster, PA) because I might be losing my vision - at least in my left eye.
3. I need an IV therapy protocol (either once or twice a month, not another PICC) to help my body deal with the die-off caused by the drugs.
4. A combo of 2 and 3.

Isn't this fun? Don't you just wanna wear bug spray all the time?

November 25, 2008:
Got sick over the weekend. Started at 2am on Sunday. Felt my normal crappy but didn't eat much all day. Then I puked. Mostly a cookie and some blood. I ended up with a half sick day on Monday and slept a good 14 hours. Mm. Sleep.I had a max 102.1 temp. It's Tuesday and I am starting to feel better. Also ate solid food today. I did call the doctor about my meds and all that, but, they won't give advice (meaning any information) without me seeing the doctor and waiting 10 hours to see him was out of the question.

December 10, 2008:
Feeling great at this appointment, actually. I got some eye drops to help with the vision.

I told the doc about the week of not eating and the puking. He said it was herxing. Since I am going on vacation, I didn't opted to have the IV detox.

Vacation was fun - but, I had to go off medication, I was dry heaving all the time and in more pain than ever. Almost like at the beginning. I'm writing this on Jan 28th, and I am still not fully recovered.

Jan 23, 2009:
After waiting seven hours, appointment canceled. He was on the phone with his lawyers over the woman/staff that stole all his money.

Feb 24, 2009:
Got into see the doc. My blood work shows I am anemic and I'm toxic. To help me cope, I got an IV of Vit C - after being stabbed seven times. My veins kept spazing. I told the doc it's because the last time he was around them, I had a PICC. Ah. Humor. Anyhow, hopefully, in the next six weeks I can start being weaned off medications. Then just need to be monitored for relapse. Maybe the end is near.

September 23, 2009:
Ok. I haven't been updating. Anyhow, I was taken off medication about a month ago and found I have a good deal more energy. Though I am still battling with mental fog and brain "black areas."

However, I started to develop anxiety, depression and Obsessive Compulsive Disorder (OCD). In order to combat this, which is due to being off medication for the first time in two years (maybe four if you add up the medication I was on before being diagnosed), I am back on IV therapy of Vit C to help clean everything out of my system. I have undergone two treatments and they seem to be working to get rid of the depression and OCD but I still have random anxiety which can be triggered by any interaction or just hanging out by myself. Hopefully, the next two treatments will end everything. If not, I'll be back on medication to prevent any. .bad choices. The push is to stick with non-medications unless absolutely necessary.

October-November 2009:
After a month of Vit C, things got worse. Pain, brain fog and mental issues. Now I will be on two infusions a week of Vit C and Gluatahione. The IVs bring back the dry heaves and I felt really, really sick. I ended up taking off on the days I have the infusions (wed and fri) so I can better cope. The doctor gave me some anti-nausea medication which helped. I hadn't been able to eat for the first week and lost five pounds. Now when I eat, I just feel sick. But, I can eat and I don't always feel sick. However, the next adventure is that I have no veins left that aren't scared. The doctor suggested to put in a portacath but the office girl didn't make the appointment. I had to make another one. We'll see how this goes.

Between the date before and behind:
I got through the IV and dropped about 15lbs since I have been unable to eat steadily. The IV was a mild success and I was put on two rounds Coartem - three pills every 6 hours for 12 hours and 3 pills every 12 hours until done. That was rough and I still haven't be able to eat. Still have headaches, horrible air-hunger and fatigue. I also got to wear a heart monitor for 24 hours because of the medication I was on. I had some heart issues.

Jan 21, 2010:
So, I was really sick. The worst part, and maybe the most deadly, is the depression. Someone once told me depression is like ridding a wild horse through the darkness, the best you can do is hold on and hope one day the horse stops. It's the worse because it messes with your perception and once you lose sight of that, it's an easy downhill spiral. I am back on the Coartem as well as a medication for the burning in my tummy. The doctor found I am vitamin D deficient, so I am on a prescription for that since that's a pretty bad situation. He said I might have the H. pylori bacteria (ulcer causing bacteria) which is a co-infection of the Babesiosis (co-infections on co-infections? Crazy!). Hopefully, in the next month or so everything will work itself out. I'm really, really tired.

Feb 20thish, 2010:
Beginning to eat solid food again. Did a six week treatment plan with the Coartem along with additional D therapy. Feel crappy. Wee.

May 17 , 2010:
Another four weeks of treatment due to a sharp spike in some of my blood levels that indicate some parasitic activity. Seems to be that the parasites are cystic again. Wee. I am also still low in the Vit D department. That might be a long-term situation. Anyhow, after these four weeks, maybe I will only have to go back every three months. At this point, I am sure whatever pain or issues I have will be there for the rest of my life, even if there is no active infection.

Fall 2010:
Things were going better, I started biking. Then, this one Wednesday, everything collapsed again. Dr. Burke said I probably relapsed on Babes and possibly Bart and started treatment. I started losing feeling in my arms - the neurapthy got worse.

November 16, 2010:
Dr. Burke died suddenly in the office. I saw him a couple days before when he told me I had no clots and to continue my treatment.

Devistated.

December 20, 2010:
Saw Dr. Mulders. I did my best to stay calm and trusting. After going through everything with Burke, I didn't need some doctor telling me it was in my head or that I wasn't a tough cookie or I wasn't that sick. Over the next couple months, he tested me for illnesses and allergies. I showed signs of previous (but not active) Lyme, Babes, Bart and phenomia.

I also have some food sensitivities. He gave me a crap load of suppliments - vits, yeast balencing agents and other things. Even a B12 injectable (which gave me bad Acne). I had not been able to eat right - and wasn't eating for days at a time. Suddenly, I could eat again on his speical diet.

I found I do have a problem (though minor) with vingar and yeast. Cutting this stuff out of my life made everything better.

Mulders did a heavy metal test (provoeked with DSMA) and I was off the charts. We started some more suppliments.

January 2011
Eating pretty normally. Had a massive breathing problem, thought I was going to pass out. Knew I was relasping. Got to see the doctor.

Mulders did a spit-test before and said I had adernal fatigue. I have to rest, take a tiny-itty steroid to support my adernals (not take over) and see how things go.

August 16 2011:
Everything is look good. Toxic levels are almost non-existant. Still need to support the adreals.

Started biking! Started feeling hungry (haven't in months!)

Post on FB: Tick-Borne Diseases: After 14 years, it is over. Never again will you dictate what I can and cannot do. Never again will I sacrifice what I love because of you. You are no longer my friend, my confidant or my shadow. From this moment on, this is my life and you have no place in my future.

October 2011:
Rode in my first biking event - I rode 33 miles.

Still have "off-days" but no where near as bad. I can totally manage this.

Centry bike ride (in like a year) here I come!

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Medications Overview (note: Incomplete, I have since thrown out my box of bottles):
Orphendrine, Mobic, Relafen, Diflunisal, Prednisone, Aspirin, Advil, Orutus, tramadol HCL-aectaminophen, Lyrica, Skelaxin, Diflunisal, Progesterone, artemisinin, Sulfamethoxazole, Levequin (IV/Oral), Lidoderm, Ranitidine, Mefloquine, Dapsone, Rifampin, Armour Thyriod, Malarone, 4 injections of radioactive substances, heprin (IV), Rocephin (IV) and Clindamycin (IV), Gluatahione, Alinia (nitazoxanide) and Acetly L-Carnitine, Vitamin C (IV and oral), quercetin, Coartem,

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