Reflection

It's been 8 months since my diagnosis, but it still feels like just yesterday. It's been a roller coaster, and I have been doing well. But its tick season again, and I'm getting anxious about being outside. I am especially worried about my loved ones. My mother in law found 3 ticks on her after a hike the other day, and my father in law found some, too. It really freaks me out, and hits an emotional spot for me... who knew seeing a bug could make you so sad.


And with that, May is Lyme disease awareness month. I'm trying to do my part, but people aren't very receptive. I think because people must think of it like cancer, if you get it, you get it, and that's when you deal with it. I think if I hadn't been diagnosed, I'd be the same way. But it's terrifying to me how easy it is to get Lyme or other tick-borne illnesses, and I wish others would take the necessary precautions. I'm trying to make a point to use Facebook as a means of getting some information out, but I'd love to hear about other people's methods.


I have been unemployed for the past 8 months, because for the first 4, I was really sick. In January, I started feeling significantly better and started to look for work again. I was substituting part-time, which was convenient because I could pick and chose my days. But last week, I was hired on full-time at Lead-Lok. I start tomorrow. I'm really nervous about how I'm going to do. I've been having some back pain still, which I cannot find relief for. It's what made me quit my job back in May of 2011. I need this job, and I want this job more than anything... I just don't know if I can beat the pain. I'm continuously looking into solutions, but nothing has seemed to work except codeine, which I obviously want to stay away from. 


I'm scheduled to see a LLND that is only 2 hours away, instead of the one I'm seeing who is 6+ hours away. He isn't a medical doctor, but rather a naturopathic doc. I'm anxious to see what he says. I know he steers clear of antibiotics as much as he can, and I think they are working for me, so we'll see how that pans out. I hope he can help me with some of my symptoms with some natural remedies. Maybe even my back!


Update on my lyme: 


I've been really tired again, and like I said, my back has been really bugging me. And my regular "yeast symptoms" and gastro problems, but other than that, I've been feeling okay. 

Off my meds for a few days....

I called in my prescription to the pharmacy a few weeks ago. About a week ago, I got a call from the automated system telling me that my prescriptions were ready to be picked up. On Thursday, I ran out, so I went to the pharmacy on Friday. I waited in line for 10 minutes, and then was told that they didn't have any in stock. I was furious, because this happen before when I first started treatment. They told me that they will order it, but it will likely not arrive until next week. So I am going to now have to wait for a few days without treatment. It's really unfortunate how quickly my symptoms come back to me. I'm thankful I'm not always like this, but I wanted to record my symptoms that I am having today since I will likely forget once I get back on my treatment.

Yesterday (Friday) I was extremely tired and my upper back hurt. I started having really bad pain in my upper stomach which felt very sharp. It was difficult to breath. I had some minor twitches in my knee and hand.

This morning I woke up very tired again with arthritic pain in my hands, knees, shoulders, ribs, hips, and neck. I feel like there are weights on my eyelids. I started having anxiety... I've also experienced some pretty bad ear pain in my left ear, and right now my right ear is pulsing. My ring finger on my left hand has been bugging me all day. Right now I am having some pain in my chest, on the left side. My upper back is hurting again. I feel like sleeping the day away but I'm cramming my weekend with procrastinated homework that is due tomorrow and Monday.

I'll add anything that comes along. And I'll do an over all update later.

I forgot more twitching today. Right now it's the back of my right thigh. Sometimes it's my knees, or my hands. Earlier it was my rib/back. Just random spasms.

Update...--->Month 7

So I wanted to keep this record so that I can look back and remember, in case this goes away quickly and I don't remember that I did in fact have symptoms. :)


My last post, I was doing really well with the Lyme symptoms, basically none. I had the yeast infection type symptoms, and have since had a biopsy which came back negative for Lichen Slerosis, Cancer, and yeast.... So my doc thinks it's just a lyme symptom. Nothing really that I can do about it except soothing creams and ointments, etc. 


A couple of weeks ago (Feb 27), I started subbing nearly full-time, at which time I forgot a few of my dosages. On the 7th of March, I started getting back pain again at night (after a long day). I took that as I was tired and needed to rest, so I did. But the next week, it got worse, and this past weekend (the 17th-18th) it kept me on the couch during part of the day. Last night I started having zingy pains again, and today I have ear pain in my right ear, exhaustion, back pain (from the time I woke up), and neck pain. I have gone back to making sure I'm taking all of my antibiotics. I'm desperate not to get back into where I was a few months ago. That was miserable. I have finally felt like I have my life back, and now I have these debilitating symptoms again. 

Month 6---> let me catch you up!

I've still been doing my treatment, except because of finances, I haven't been doing the last protocol I posted.


I've been on:


Cefaroxime
Tindamax
Yeast
Cultarelle
more probiotics
Asidophilus 
Seriphos
Premier Adaptogen
5-MTHF
Artemisinin


After Christmas, I started feeling EXTREMELY better. Well Christmas I felt horrible, and I have had a few bad days since then. But I feel like I have my body back!! :D Until now. Hence why I'm here.....


I won't go into too much detail, because it's gross... but if you are going through similar treatment and you want to know the details, feel free to contact me. I'll talk to you about it...


It's very common to get yeast infections while you are on antibiotics, which is why I'm on a yeast supplement, probiotics and asidophilus. I had all the classic symptoms, so I went in to my general practitioner and requested the meds for it. I think that was in December or January. I took the pill, and the one 3 days later because it wasn't going away. I also picked up on the supplements to help make it go away. I stopped washing with soap, put vinegar on it (OUCH!) and it finally subsided. Most of it, that is. So I thought it was getting better.... Until a couple weeks later it got really bad again. So I called up the Doc. and requested a refill. I took the pill, and the second one 3 days later. Same thing happened. This time I started getting paper cuts down there. Wowza that hurts! I googled it and found that it is common with bad yeast infections. THEN I called again, and did the same thing. His nurse called me back and said if I want to have someone look at it and do a culture to see if it needs more than what I'm taking then I should go to a gyno or a female in their office. I opted with a OBGYN. I saw her last week, and she was SOOOO nice! She looked under a microscope and said that there was no yeast present. So she did a culture and said there is no bacteria present. She thinks it is lichen sclerosis, so I have a biopsy scheduled in a couple of weeks (the 2nd). Hopefully I'll find out more about it. Its causing a lot of problems right now. Wowza. 








WEIGHT:


I haven't gained any more weight, but my stretch marks are catching up. I didn't think that not working out would bother me, but after five months of no cardio, I went crazy the other day. I worked out--- and I paid for it. I'm hoping I'll keep getting better so that I can get rid of this weight. ugh






HIAR LOSS:


Haven't had it anymore....






CORTISOL:


The treatment for this is incredible! If I miss a dose, I know! 






MY BRAIN:


Wow I feel like I have my brain back. I haven't struggled in school much at all. I have been getting A's on everything. I've made a few mistakes, but only because thats normal, not because I have no memory. I'm really happy for this. I can deal with the pain.






PAIN:


It's been significantly better except when I'm on Tindamax. It happens to give me bad die-off. I spoke with my Dr. yesterday and he is putting me on charcoal and if that doesn't work, then I need to resort to my last protocol for the drainage supplements. Today is day 1 of Tindamax and I already know. :( Pain isn't as bad as it was before treatment, but the digestive problems suck.




I think that's it!! :D I'm on the road to recovery.... Thank God!

A month later-- a new treatment protocol

I went to my LLMD again this week. He wanted me to come back to Seattle to come up with a full treatment plan because my Western Blot and Elisa were CDC positive, and the treatment I was on wasn't enough.


So....... Here is what I learned:


There are two possible reasons why my symptoms have gotten worse since I started the Doxy and Tindamax:


1. It is working, and it is stirring up the lyme toxins (die off)... This could be the "worse before better" that most people have. Hopefully this IS it, and we just need to establish exit routes for the toxins (a drainage remedy kind of like a detox). 


OR


2. I am incompatible to the meds. So we did another muscle test and it showed that the doxy was not working well with my body, nor were the B-12 injections.




My extreme weight gain is apparently very typical of lyme patients. You either gain or lose a bunch of weight really fast.... ???? My LLMD is hoping that the lyme treatment will lessen the inflammation of the TNF Alpha something something something... Basically we are hoping that the weight will even out as I treat the lyme. If not, we will look into it in a month. There is not really a "Lyme diet" so to speak--- just eating healthy.


Hair loss is normal for antibiotics. He didn't seem to be too worried about that. I'm unlikely going to lose it all. Just thinning :)


GOOD NEWS!  The reason I don't have to go on IV antibiotics is because we aren't trying to "save my life" in a rush. I have clear, horrible symptoms, but I'm not in a life or death state right now. If I get worse, or I have MS type symptoms, then IV will be a last ditch effort to kill the Lyme, but it is more gentle on your body to just do an oral antibiotic/ supplement treatment protocol. YAY!! 


The time line for the treatment is still 1-2 years (most likely) as long as the treatment is working properly. He hopes that with a drainage remedy, I will start feeling better and not worse! :D


Now for some really interesting things:


My saliva tests came back. My cortisol levels were extremely low in the morning and during the day, and too high at night. What this means is: I am in a depressed state, have extremely low energy in the morning and during the day and at night, my body is unable to fight of infections or restore itself. At night, your cortisol levels should be at 0, so that your body restores the higher level in the morning, giving you adequate energy levels to conquer the day!


In the morning, the normal range for cortisol levels is 13-24 nM, mine was 7. Around noontime, the normal range is 5-10 nM, and mine was 4. In the evening it should be 3-8 nM, mine was 4. and at bedtime it should be 1-4 nM, mine was 5. Low values are a sign of adrenal deterioration. 


On the Lyme note:


My Western Blot did come back positive. The bands that were positive were IgG p 45, IgM p 23, and IgM p 41. (All of which are specific to lyme)


The Elisa Assay showed that B. burgdorfer was present, Immunodominant protein was high, Babesia was high. OspA+OspC was high, OspE was high, LFA was high, Variable Major protein was high, B.b. Sensu strict was high. B. garinii was high, B. afzelii was slightly high.


As far as exercise goes: 


Since I am gaining still, I asked my LLMD what exercise I CAN do. He gave me a prescription for Lyme Rehab-Physical Therapy which says:


Please enroll this patient in a program of therapy to rehabilitate her from the effects of chronic tick-borne diseases.


Aerobic exercises are NOT allowed, not even low impact, until the patient has recovered. Aerobics can be damaging and must be avoided.


Exercise no more often than every other day, starting with every 4th or 5th day for one gentle hour.


Work to improve strength and reversed the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics, and/or resistance training, using light resistance and many repetitions. Use minimal resistance. Avoid free weights, bands and large exercise balls and favor machines (especially hydraulics) that can guide limbs through a prescribed arc. 




So finally, my treatment protocol:

Antibiotics:

Tindamax 2 weeks on, 2 weeks off cycles (1 twice daily)

Cefaroxime 500mg (1 twice daily after breakfast and dinner)

Probiotics:

Yeast (1-2 twice daily with antibiotics)

Cultarelle (1-2 in between antibiotics/lunch)

Drainage of Toxins:

Take together away from food in a little water. Hold in mouth for 1-2 minutes before swallowing twice a day.

Itires (lymphatic) follow instructions

Renolix (kidney) follow instructions

Cortisol Levels:

Lower at nighttime: Seriphos (1-2 15-30 min before bed)

Raise AM and noon: Premier Adaptogen (2-3 capsules in AM with or without food/meds and 1-2 capsules in early afternoon)

Energy:

Mix BND, B-vitamin mix (1/4-1/2 tsp before breakfast and dinner or earlier. Hold in mouth 1-2 minutes before swallowing. Mix with water/juice)

Hydroxy B-12 injections (1cc twice weekly)

Immune System:

Transfer Factor Multi-immune, CD-57 count (For one month take 2 twice daily 30 before breakfast and dinner, then switch to 1 twice daily)

Transfer Factor Lyme Plus (2 capsules 30 minutes before breakfast)

5-MTHF (folic acid): (3 per day for one week, 4 per day until gone, switch to 5mg size and take 1 per day)

Babesia:

A-Bab: Work up to 15-20 drops twice daily. 30 minutes before breakfast and dinner. Can take with Transfer Factors. See instructions.

Artemisinin: Start with 1 capsule twice daily just on weekends. Take with a little grapefruit juice and on an empty stomach. Do not take with A-Bab.

Day 68... I think... let's go with Month 3

It's been a while since I've last posted. And a lot has happened since September. I had mentioned that I failed my first exam, and since then, I haven't been doing much besides studying and resting.


On the academic side of my life, I got a tutor and am working with disability services to help me figure out how to retrain my brain into learning the material. It's been the most challenging thing so far... my brain fog. It's hard to describe, and it is very emotional, so I'm not going to talk about that today....


I wanted to make a note that my second Western Blot and Elisa came back POSITIVE for Lyme disease. Of course we already knew that, but to have a confirmed diagnosis is bittersweet. 


I'm still doing my antibiotic treatment, and I'm not sure if its helping. My symptoms lately have been primarily: gastrointestinal (but honestly not as bad as in the beginning!!), sharp pains randomly all over my body, aches and pains like I'm an old lady, really bad upper back pain the past week or so, arthritis/joint pain, stiffness, ear pain, and I'm sure more, but I can't think of everything... Yesterday my anxiety reappeared which is horrible in itself. Oh and of course fatigue/exhaustion. This has definitely gotten better than in the beginning, though. I was sleeping so much the first few weeks of treatment. I at least get out of bed everyday and get at least one thing done. :) Some days I get quite a bit done, and I'm proud of myself.


I had another sunburn experience. I spent too much time in the sun, and FRIED my face. My nose was bubbly and blistered. It hurt so badly!! But it was totally my fault-- I should have brought an umbrella like an old grandma :P


I applied for disability and social security, although I'm told that the process is lengthy and I am likely to be denied the first time or two. I'm hoping I don't have to get a lawyer!


I've been pretty emotional lately-- I'm stressed out. I don't handle things like this very well. All I want to do is have the energy to go for a bike ride or something. I'm getting fatter and fatter. It sucks. But I've been watching some videos on youtube, and I'm WAY better off than some people with Lyme. Some people are wheel chair bound. I just hope that this treatment works! I don't want to be like that. And I hope that I get my fully functioning brain back, because I'm determined to finish my degree right now, and this failing nonsense is hurting my ego :P 

Day 26- I failed my first exam.

I'm struggling in school more than I thought I would. I studied for hours and I got a 42%. I'm devastated, and I don't know what to do. I contacted the Disability Services office at UI, but I haven't heard back from them yet. 

If anyone has any suggestions on how to (can't find the word... accommodate? no...) deal with it, please help! 

Nothing has changed the past week or so, except that when I spent the weekend with my parents this last weekend, it wiped me out! I slept all day yesterday, and was in quite a bit of pain. Today I'm exhausted and in a lot of pain. 

Still having gastrointestinal issues... :(