A lot going on in my brain here. Well, maybe not a lot but I will write out my thoughts. It is good to have a record of what I have been doing lyme-wise because sometimes I need to reference back to this blog to find out some things about myself and my treatment.
First off, I have not been taking any vitamins or supplements for the most part since beginning my antibiotic treatments in August this year (2013). At the end of December I will have completed the 5 month antibiotic point! I am not really 'herxing' anymore other than the daily fatigue which seems to be getting a bit better but it may just be that I have been spreading out the Tinidazole out to 500mg per day, every day rather than 500mg 2x a day, 2 weeks on 2 weeks off. I am back to doing the 500mg 2x a day though right now. Anyways. That is what is up with treatment.
And my next doctor appointment is coming up the 2nd week of January. There are some things I want to cover with my doctor. I want to talk about how when I took clindamycin for tooth pain back in June, it made me ache all over and makes me think it may have been the babesia issue reacting. I mean I felt sore all over. This may be the source of the muscle tenderness I have that has NEVER gone away with any one of the treatments. OR how when I took the Artemesinin in high dose for the first time my muscles (especially thigh and buttocks!) were EXTREMELY sore! Now that the layer of Bartonella has been peeled off, and the Lyme symptoms (other than fatigue) have gotten better, I now am focusing on the muscle aches, the fatigue, the blurred vision and my cycle These all seem to point to babesia. Or parasites?? But this next appointment, I am sure will be about Babesia because I will be coming up on 6 months of Bartonella treatment with antibiotics (which I think the Bartonella was long gone with the HH2 treatment, but heck, why not kill the heck out of it for 6 months with antibiotics for good measure).
Life-wise - I am compiling the kids lists for Christmas. Electronics top the lists. UGH! Our weekends are spent on electronics. With my fatigue from the treatment, I don't have the energy and will to push us all out the door into more physical activity. And after all, it is winter so it is not exactly major outdoor activity weather at this time. So it may be another year of buying this type of stuff for the kids. Hopefully, when next year comes around - I will have more stamina and not have to depend so much on electronics to keep the kids minds busy and engaged. I must say, they are not allowed TV or Electronics during the week at all, unless it is schoolwork so I haven't completely given in! We do have some boundaries. But the weekends, I unwind. And so do they... They would love to do other things but for now, it is what it is.
PS - I bought the Z-coils. I am still testing them out... I've been so busy getting ready for Christmas when I have the energy that I haven't tested them out by going for a walk in them. The first few days I had them, my hip was hurting but it could just be a coincidence. I wore them to Target and had no foot pain while walking in them. Then a few days later, I wore a pair of boots (with no kind of orthopedic support) and I was in total pain. I couldn't wait for the shopping trip to be over.
So for my upcoming appointment. I need to remember the following items:
Babesia -
- Clindamycin Reaction
- Artemesinin Reaction
- Muscle tenderness (tender sore points that haven't been worked out)
- Constipation
- Fatigue (collapse in need of a nap when taking Tinidazole)
- Blurred Vision (at night, on and off about 1/2 the days out of the month)
- Dreams (every darn morning! - I never dreamed before treatment!! - crazy!)
- PMS issues (Day 14 Fatigue, Fatigue and Low Feelings Before and After)
- Continue on Tinidazole (and Doxy?) (Add Mepron? And Zith? Add Art?? Add Bab-2?)
- Parasite (can be added??)
Resolving Symptoms (they started with treatment and got really bad and now are gone)
- Vibrations, Tingling, Numbness
- Stabbing Pains
- Lack of motivation (???)
- Stool is no longer /oils in toilet no longer seen(when I added Tinidazole)
Test:
- Adrenal Result
- Test 4 - EBV and other viruses panel, Protomyxzoa, CD-57?
- Neuroscience Neurotransmitter Test
- Hormone, Day 14, Day 10 (month test??)
Teeth:
- Root Canal, Partial, Zirconium Implant (eek! $$$ :-( !!!)
Added Notes - January 1, 2013
- Parasite Treatment for 1 month (test to see if anything happens)
- Alinia, Mebendazole with Doxy for 2 weeks with Humaworm
- Tinidazole, Doxy with Humaworm for 2 weeks.
- Anything to add? Klinghardt protocol? Ivermectin??
Then my idea is to take the following. If no parasite reaction then good! If not - continue parasite???
Doxcycline
Tinidazole (can I take 1 pill a day to minimize fatigue, rather than 2 weeks on 2 weeks off?)
Malarone (easier because it is a pill/heard of success with fibro - or switch to after Mepron)
Zithromax
Clindamycin (reaction to this, muscles sore...think it may help with fibro symptoms???)
Nystatin (no longer react to it!)
Sunday, December 15, 2013
Saturday, November 30, 2013
This Fatigue is Getting Old! And Z-Coils....
Okay. Treating lyme is huge exercise in having faith. For one, you have to feel worse before you feel better. It just takes faith to believe that the medicine is actually helping you and not making you worse. Tinidazole per the Eva Sapi study is said to kill 90% of both spirochetes and cysts. So that is great. So I am on Tinidazole. And I feel tired. All the time. And I would feel better on the days off I had from the Tinidazole (as in the 2 weeks I wasn't on the Tinidazole). But this last pulse, I still felt tired AFTER the 2 week pulse. And then I worry. Is the Tinidazole permanantly making me tired??? Am I getting worse?? This is the first Christmas that I just haven't felt the emotional energy and felt excited about the festivities. Even though I was tired before, I would feel a bit of excitement and adrenaline from the celebration of the season. But this year, I am just not as interested or excited but I want to be. I think it is the medicines affecting my motivation levels. And then I think? Will I feel like this during the holidays forever? As in next year? No, I don't think I will, I tell myself. I read an article over again about how with flagyl (similar to Tinidazole) that the profound fatigue continues for 6 months into the treatment whereas the other symptoms from the Lyme Disease almost disappear. I find that this may be my experience. I am having profound fatigue where I wasn't having it anymore, except on days before my period. Don't get me wrong. I had profound fatigue for a few years but after treating with herbs and vitamins and then not treating with anything for 6 months or so, I didn't have the extreme daily fatigue that I had had. Well, it's back now that I am on the Tinidazole. So literally, I hang onto hope from this one article. Hope that once my six months of being on the Tinidazole is achieved, that the fatigue will have died down, alot. So that's where I am at. But the stabbing pains, the buzzing, vibration feelings, numbness, sore feet has gotten ALOT better. The only one of the symptoms I am having any more is sore feet. And it has gotten alot better. Whereas I had a swollen lump in the middle of my left heel (which a podiatrist told me was the bursa sac) and it is gone now. Just the perimeter of my heels are sore. And it feels like the bones hurt there. But the podiatrist says it is plantar fascitis. I don't know how plantar fascitis makes it feel like the bones hurt and not the soft tissue but that's what he says. This is an ongoing issue for me. Literally one of the first symptoms I have had since September 2007. Which leads me to talk about...
Z-Coils!!!! They are shoes with literally a mass amount of testimonials of people who have heel pain or foot pain or back pain and these shoes allow them to be on their feet, to exercise and even one guy wrote about running a marathon in them. I don't think my immune system or body or fatigue levels would allow for anything close to a marathon right now but this literally would be a miracle for me. I wear flip-flops and have done so since....you guessed it....September 2007...so I would really love it if this worked out for me. I have an appointment with a podiatrist who has a Z-Coil shop connected to her office. I am really hopeful that this may be an answer to my long-standing inability to be on my feet for long periods or go for walks and runs. I hope when I post another update that I can indeed say that they are a miracle!
Z-Coils!!!! They are shoes with literally a mass amount of testimonials of people who have heel pain or foot pain or back pain and these shoes allow them to be on their feet, to exercise and even one guy wrote about running a marathon in them. I don't think my immune system or body or fatigue levels would allow for anything close to a marathon right now but this literally would be a miracle for me. I wear flip-flops and have done so since....you guessed it....September 2007...so I would really love it if this worked out for me. I have an appointment with a podiatrist who has a Z-Coil shop connected to her office. I am really hopeful that this may be an answer to my long-standing inability to be on my feet for long periods or go for walks and runs. I hope when I post another update that I can indeed say that they are a miracle!
Monday, November 18, 2013
How Long Until I Get Better?
Will I be one of the ones that gets rid of this disease completely and fully without ever having to treat it again? Or will I fight low levels of it the rest of my life? To be honest, I have been swallowing vitamins for years (like 35 of them a day) before I knew I had lyme. I just knew something was terribly, terribly wrong with my incredibly fantastic body that had served me well all my life. Everything was falling apart. And vitamins did help. A lot. But the anxiety was so dominant and still there with moodiness. The 5htp and Tyrosine really did help ALOT but the anxiety would still come on then and again...albeit nothing like when it first came on! However, it was incredibly strong when I began treating with herbs. In fact, the depression was so strong too. I felt like I would NEVER get better. That was the resounding thought and feeling. I would ask my husband "Do you think I will get better? Do you think I will ever get better?" He would say "Yes, I think you will get better". Just having another's vote of confidence meant something to me. It helped keep the faith. The fact that all hell broke loose when I started taking the herbs that targeted Lyme and Bartonella was most likely proof that I was killing something and eventually get better. And I have. So much better. But still today, I ask, how long until I get better? I am on the tinidazole pulse...this is my 4th pulse so basically when I have finished it I will have completed about 2 months of tinidazole (58 days at 1000mg a day). So maybe I am herxing right now. Maybe this feeling is just the tinidazole killing off the Lyme and the feeling and thought process I have in my heart is a shadow of the storm that once overtook my heart when first starting to treat the Lyme Disease with the herbs. Last night, I had a bit of insomnia...had a hard time getting comfortable and to sleep and then I awoke for an hour between 3 and 4 with a RLS-y feeling in my joints and the need to get up, cool down (I felt hot) and so I went and slept downstairs on the couch (after staying up for about 45 minutes and writing). Anyways. So right now. This is probably a herx. And happy to say. A lot better of one that I have had in the past. But still, I am bored taking these dang pills everyday. Nice, I know. They are helping me but it just gets monotonous and I want it to be over. I want to be better. I want to be healed. Forever. But I carry on, taking my medicine. It has been about 7 years since I got ill. How I hate the sound of that. I wish it was just 1 year, and I was where I am today and it hadn't taken me that long to figure out what was going on (or see what God was trying to tell me when he sent a friend next door who had Lyme and kept telling me about it....or when I went to a doctor and she mentioned Lyme Disease and it took me a YEAR to take the test because I just couldn't believe I had it! A year because I don't remember a bulls-eye rash and that is all I knew Lyme to do. Ugh. Me and my thick head! Makes me wonder what else I am being so blind to that God is trying to show me. It is all right there, but it takes getting through our thick head, and our blind eyes, to finally see...at least it does for me!) So I am praying that He guides me with treatments and of course, if it never does go away...gives me the contentment to walk through it. But...BUT...I am still believing for complete eradication!
Sunday, November 10, 2013
This time around - Artemesinin
I am on my 3rd day of taking 1200mg of artemesinin in 3 divided doses. The last time I took a high dose or artemesinin like that my muscles were so, so, so sore. This time around. They are not! So that is good news. My muscles still hurt (or skin) when you push certain tender spots especially so I am not saying I am free and clear but those intense muscle pain and intense fatigue is not happening. This is my 3rd time (or maybe 4th) of adding in artmesinin to treat potential babesia. The first time - the dose was so low, and my anxiety was so intense from Bartonella, that I really didn't notice in anything when taking artemesinin at 100mg 3x a day. I did note a little fatigue though that first time. The 2nd and (maybe 3rd time) of taking it, I took much higher doses like I am taking now and I had intense muscle soreness pain in my big muscles (glutes and quads). This time, I don't have that pain at all. Go figure. I haven't been treating Babesia at all this time around since starting treatment in August so I am really not sure what to make of it. Maybe if I continued Artemesinin for a week or so they muscles might start hurting? I don't know. Anyways, I am happy I am not having muscle pain.
Another thing, I have been going for 20 minute walks every day. I absolutely love getting outside in the fresh air. Foot Pain and Anxiety and Lethargy have been the major road blocks to that historically for me (never before Lyme Disease but always after Lyme Disease). Every time I would start to exercise, inevitably at 3 weeks in I woulds suffer debilitating anxiety and absolute depression that would last and last and last and last. So far, I have been exercising very gently, and this has not happened. I was reading another persons blog who has lyme and talks about how they want to be better than they are and they are running like 2-4 times a week at 2-4 miles a pop. Honestly, that is my end dream. I mean if I could run 2-4 times a week at 2-4 miles a pop I would be over the moon ecstatic. Literally, that would be my dream come true. And so that makes me realize that I am so much further behind than they are. Right now, when I walk, the bottom of my heels hurt, and so that is still there. I am thinking about going to a Podiatrist and asking for a bone scan or mri of my foot just to see if I have adequate blood flow or bone loss on the foot. I am also thinking of taking the herbal tea Boneset that Stephan Buhner recommends as well as a formula for strengthening bones by Jarrow called Bone-up that has ground up calf bone, calcium, magnesium, vitamin D and vitamin K in it. So that is where I am at right now. And...I am still so grateful all the time...that I am not dealing with anxiety. Yes, there is ALOT ahead of me but I am SO much better than where I was. Ahead of me...heel bone pain, muscle tenderness, weight loss, lethargy gone and of course the lyme herxing of stabbing pains that I get when I am on tinidazole. Today, I will be starting my 3rd pulse of Tinidazole. Wish me luck!
Another thing, I have been going for 20 minute walks every day. I absolutely love getting outside in the fresh air. Foot Pain and Anxiety and Lethargy have been the major road blocks to that historically for me (never before Lyme Disease but always after Lyme Disease). Every time I would start to exercise, inevitably at 3 weeks in I woulds suffer debilitating anxiety and absolute depression that would last and last and last and last. So far, I have been exercising very gently, and this has not happened. I was reading another persons blog who has lyme and talks about how they want to be better than they are and they are running like 2-4 times a week at 2-4 miles a pop. Honestly, that is my end dream. I mean if I could run 2-4 times a week at 2-4 miles a pop I would be over the moon ecstatic. Literally, that would be my dream come true. And so that makes me realize that I am so much further behind than they are. Right now, when I walk, the bottom of my heels hurt, and so that is still there. I am thinking about going to a Podiatrist and asking for a bone scan or mri of my foot just to see if I have adequate blood flow or bone loss on the foot. I am also thinking of taking the herbal tea Boneset that Stephan Buhner recommends as well as a formula for strengthening bones by Jarrow called Bone-up that has ground up calf bone, calcium, magnesium, vitamin D and vitamin K in it. So that is where I am at right now. And...I am still so grateful all the time...that I am not dealing with anxiety. Yes, there is ALOT ahead of me but I am SO much better than where I was. Ahead of me...heel bone pain, muscle tenderness, weight loss, lethargy gone and of course the lyme herxing of stabbing pains that I get when I am on tinidazole. Today, I will be starting my 3rd pulse of Tinidazole. Wish me luck!
Friday, November 1, 2013
Rambling....
My feet are sore from trick-or-treating last night with the kids. I soaked them in hot water when I got home and after I put the kids to bed I massaged them with peppermint lotion. I took ibuprofen too. I probably was on my feet just an hour. Maybe an hour and 20 minutes. That is all. It is an annoying symptom because I just want to be on my feet without them being in pain. I don't have any of the anxiety symptoms of Bartonella anymore and they have been gone for about a year or so, so I think this maybe it's Lyme or Babesia Duncani or just the fact that I weigh so darn much. Today, I am trying again to eat healthy and make a habit of it. It is so darn tempting because I have four kids and quick kid food doesn't tend to be healthy and that is just about all I cook these days. We have pizza about twice a week. I do make them healthy snacks (buy a veggie tray, fruit tray, carrot sticks) but I don't have much motivation to cook. Maybe if I was skinnier I would because then I wouldn't be afraid to eat the food I cook and gain weight from it! Anyways - I make quick foods because they are easier when you just don't have energy or motivation. But the quick foods I make - I try to make them as healthy as possible. Lean chicken breast, brown rice pasta, salad, taco's with ground turkey instead of beef. But pizza seems to sneak in there. Especially if we are in a rush - or going to someone's house.
Moving on. So the symptoms that are annoying me the most right now are - lack of motivation, foot pain and fatigue. I know I felt like it would be a miracle to have anxiety not part of my life and here I am living it. It was really hard to kill it and took a long time but today I don't have that symptom. But still, right now I wonder, will I ever get better? Will I feel motivated again? Will the foot pain go away? Will the fatigue that comes with the Tinidazole pulse (2 weeks on, 2 weeks off) go away at some point? I often forget about the 'little stuff' like pain in the right side of my chest last night I had as I was going to sleep. Or just a hint of it happening right now in the same spot. On Tinidazole, I had a ton of stabbing pain towards the end of my pulse and I wonder - is the stabbing pain from the Lyme or the Babesia Duncani? I haven't had any formal treatment for Babesia Duncani and I would really like to start it except for my doctor is on maternity leave right now so I have to wait until January to get a medication switch. I guess I could go to another doctor to start the Babesia Treatment but that just feels like a hassle. It is only a couple months and I am plugging away at the medications she had me on so it will all be fine in the end. I think I am going to add in Artemesinin on my own though because from what I have gathered from the lyme forums on the internet, high dose artemesinin for 3 days ever 2 weeks seems to be more effective for treating Duncani than medications that tend to be more effective for Microti. However, there is a story in the forums of one guy who had remission from one course of Babesia meds for his Babesia Duncani. I have tried Artemesinin before and at a low daily dose (that my doctor had me on) I didn't feel anything herx-wise from it. When I took it at the high dose, I felt extremely fatigued in my muscles. Like I had just ran a half-marathon. The word is that Babesia Microti is much easier to treat than Duncani. Great.
Anyways. I also wanted to say that I wish I didn't have to pulse Tinidazole, I just want to keep taking it straight through. It seemed to be helpful to my digestion and because of the fatigue I had while I am on it, it is killing something off (Lyme cysts and maybe Babesia Duncani???) and I just want to grit my teeth and get through it and see if the fatigue goes away. I don't want to have to wait 2 week to restart but I am.
That's it for now, but as I sign off, it is with a small stabbing pain on the top of my head. When I first started the medications I am now on for the Lyme, I had a ton of random vibrations come and go at different places in my body. Those have gone now. Replaced with these random stabbing pains. Wish more people who have gotten better from Babesia Duncani would post their stories on the internet. Success Stories are like liquid hope for me to press through the discomfort of symptoms. That is why I post any success I have had here on my blog. It encourages me to keep hitting it hard and overcome it.
Moving on. So the symptoms that are annoying me the most right now are - lack of motivation, foot pain and fatigue. I know I felt like it would be a miracle to have anxiety not part of my life and here I am living it. It was really hard to kill it and took a long time but today I don't have that symptom. But still, right now I wonder, will I ever get better? Will I feel motivated again? Will the foot pain go away? Will the fatigue that comes with the Tinidazole pulse (2 weeks on, 2 weeks off) go away at some point? I often forget about the 'little stuff' like pain in the right side of my chest last night I had as I was going to sleep. Or just a hint of it happening right now in the same spot. On Tinidazole, I had a ton of stabbing pain towards the end of my pulse and I wonder - is the stabbing pain from the Lyme or the Babesia Duncani? I haven't had any formal treatment for Babesia Duncani and I would really like to start it except for my doctor is on maternity leave right now so I have to wait until January to get a medication switch. I guess I could go to another doctor to start the Babesia Treatment but that just feels like a hassle. It is only a couple months and I am plugging away at the medications she had me on so it will all be fine in the end. I think I am going to add in Artemesinin on my own though because from what I have gathered from the lyme forums on the internet, high dose artemesinin for 3 days ever 2 weeks seems to be more effective for treating Duncani than medications that tend to be more effective for Microti. However, there is a story in the forums of one guy who had remission from one course of Babesia meds for his Babesia Duncani. I have tried Artemesinin before and at a low daily dose (that my doctor had me on) I didn't feel anything herx-wise from it. When I took it at the high dose, I felt extremely fatigued in my muscles. Like I had just ran a half-marathon. The word is that Babesia Microti is much easier to treat than Duncani. Great.
Anyways. I also wanted to say that I wish I didn't have to pulse Tinidazole, I just want to keep taking it straight through. It seemed to be helpful to my digestion and because of the fatigue I had while I am on it, it is killing something off (Lyme cysts and maybe Babesia Duncani???) and I just want to grit my teeth and get through it and see if the fatigue goes away. I don't want to have to wait 2 week to restart but I am.
That's it for now, but as I sign off, it is with a small stabbing pain on the top of my head. When I first started the medications I am now on for the Lyme, I had a ton of random vibrations come and go at different places in my body. Those have gone now. Replaced with these random stabbing pains. Wish more people who have gotten better from Babesia Duncani would post their stories on the internet. Success Stories are like liquid hope for me to press through the discomfort of symptoms. That is why I post any success I have had here on my blog. It encourages me to keep hitting it hard and overcome it.
Tuesday, October 22, 2013
A Few Steps in the Right Direction
So I just wanted to add a couple of steps forward in the right direction. It has been almost 3 months of using antibiotics so far. I did about 7+ months of Buhner herbals last year and before that I did 3 months of antibiotics. Throughout the time, other than the last few months, I have taken a daily regimen of ALOT of vitamins. Since starting the antibiotics up again, I have been pretty bad (only taking vitamins a few days a month!) Despite that, I have seen improvements from the antibiotics that I hadn't seen in the first 3 months of taking antibiotics for the first time as well as the herbals. Those improvements are...I am no longer feeling as constipated all the time and my stools are forming properly...yucky to say but it makes a big difference because it signals how digestion is doing. They are now softer, brown rather than yellower and floating in the toilet with oil residue. Okay. Gross. Gross overload. But I think it is making a big difference. It shows I am digesting my food properly now which is a BIG deal. Also, things that have improved are 'headaches' behind the eyes. I really don't get them. OH! I knew there was another big deal. Blurred vision. I had this nearly 50% of the month. Each night, as I would put my kids to bed, I would try to read them a story. Half the time I couldn't read them a story because my vision blurred at night. Not my general vision - I could see fine - but my reading vision - the black words would all blur together - was shot 50% of the time. Now, every night I have been able to read to the kids. I have had this blurred vision stuff going on for years since Lyme so this is a big improvement for me. This month I have added in some workout videos (Tracy Anderson) a few times a week to work on strength training using your body as resistance so no equipment is required. In the past, working out has sent me into a major, MAJOR herx that lasted weeks. It happens about 3 weeks into exercising. Thus far, I have done the DVD workout 3x and am at the one week point. I am big time hoping that I don't have a major herx and can continue working out. We shall see. Anyways. That's the news to this point.
Thursday, October 10, 2013
2nd Pulse of Tinidazole
So, about a week ago I began my 2nd pulse of Tinidazole. My LLND has prescribed a 2 week on/2 week off approach to taking the medicine. I am also taking Doxycycline and Rifampin as well as Fluconozole (Diflucan) but these are not pulsed. The fluconazole is taken only a couple days a week.
So the update goes as so. On my first pulse of Tinidazole, by the 3rd day, I felt VERY tired. Very, very tired. Slept a lot. And towards the end I felt a bit depressed. So this time around, I don't seem to be as tired as that. But I am experiencing muscle soreness, sensitivity to touch (like if a finger is pushed into my skin). I am also getting depressing thoughts as well. Not all the time, but they will come and just hit me unexpectedly.
The good news is - I still have NO anxiety. I can barely believe it. I have spent the last years fighting the anxiety. In fact, when I first got sick - the intense anxiety is what took me over the edge - I could handle the weight gain, foot pain, light sensitivity, hip soreness, hot flashes, mood swings but anxiety - I should say intense, like you are nervous X 100 is what did me in. I couldn't function. Not to mention the mental confusion, the flashing lights, the numbness, the tingling - all that fun stuff. So I am still quite happy that about 7 months of the Buhner Protocol plus Nattokinase and Zhang's HH2 seemed to get rid of it.
My main things right now are sluggishness, foot pain, depression that comes and goes and muscle/body tenderness. Of course there are always other things going on (vibrations, stabbing pains etc) but those I feel I can live with. I want to be able to go for walks and jogs and not have the bones in my heel be in pain for days afterwards. And the sluggishness, I really detest it. I am still a far cry from when people used to comment that I was always on the go, quickly completing one thing and moving on with speed to the next. Speed eludes me these days. Speed is once again my goal!
That said - I am SO much better than I was. SO MUCH BETTER. But I am moving on. With that goal in mind.
So the update goes as so. On my first pulse of Tinidazole, by the 3rd day, I felt VERY tired. Very, very tired. Slept a lot. And towards the end I felt a bit depressed. So this time around, I don't seem to be as tired as that. But I am experiencing muscle soreness, sensitivity to touch (like if a finger is pushed into my skin). I am also getting depressing thoughts as well. Not all the time, but they will come and just hit me unexpectedly.
The good news is - I still have NO anxiety. I can barely believe it. I have spent the last years fighting the anxiety. In fact, when I first got sick - the intense anxiety is what took me over the edge - I could handle the weight gain, foot pain, light sensitivity, hip soreness, hot flashes, mood swings but anxiety - I should say intense, like you are nervous X 100 is what did me in. I couldn't function. Not to mention the mental confusion, the flashing lights, the numbness, the tingling - all that fun stuff. So I am still quite happy that about 7 months of the Buhner Protocol plus Nattokinase and Zhang's HH2 seemed to get rid of it.
My main things right now are sluggishness, foot pain, depression that comes and goes and muscle/body tenderness. Of course there are always other things going on (vibrations, stabbing pains etc) but those I feel I can live with. I want to be able to go for walks and jogs and not have the bones in my heel be in pain for days afterwards. And the sluggishness, I really detest it. I am still a far cry from when people used to comment that I was always on the go, quickly completing one thing and moving on with speed to the next. Speed eludes me these days. Speed is once again my goal!
That said - I am SO much better than I was. SO MUCH BETTER. But I am moving on. With that goal in mind.
Saturday, August 10, 2013
It's been a long time...
Well, we have had a lot of transition. Moving back to the States. Settling into life here has taken some time, not without family and school drama. I didn't take herbs or vitamins or medicine for the first 7 months of this year. Terrible I know. I can't even begin to communicate all the stress that was going on those 7 months. It was hard. So it is summer, and I have just begun my treatment....again. I felt so discouraged all this year (and last) for that matter, that I couldn' move on with the medication. I was just so scared to add it in to the already stressful life I was leading. Why was I scared? Because I have had so many weird, random and hard reactions to things since obtaining Lyme Disease but of all the worst things is the psychological side effects of the disease....crippling nervousness, anxiety, fear and depression. Unreal, really. The past 6 months I haven't really had any of that. In fact, the only 'anxiety' I have had is real anxiety. Like when something happens and it really does bother you. That kind. Fortunately I have not had the anxiety that I had been having when everything is great and your stomach is twisted in knots for no reason at all. It has felt nice to react to life like a 'normal person'. So when I restarted the medications last week, I was so nervous to have that unreal anxiety start again. And the good news? So far. Nothing. No anxiety at all!!!
So why no anxiety? Well, I can think of two things. One - I did the Buhner Herbs (Andrographis, Cat's Claw and Japanese Knotweed and Smilax) for 6 months and then I dropped off as I had to quarterback an international move with my four kids and massively busy husband. Anyways. So that would be one reason why I may not have the anxiety anymore. Two - I just started taking Zeolite about a month ago. I have been really unsure about adding in this supplement to my repertoire of lyme supplements because in it's substrates it actually has aluminum. Because I am not a science person, I guess that scared me. A talk with my mom was reassuring though, as she explained that Salt (Na+Cl) is safe when combined (and we eat it all the time) but is not when it isn't combined. So Zeolite is fine in the tightly bound chemical structure it is in. The reason I started taking it was that I kept reading about how ammonia is a huge 'neurotoxin' in lyme. In fact, Jernigan believes it is the primary toxin that Lyme gives off in the body. Zeolite is used in fish tanks to bind with ammonia and clean the water. It also binds with heavy metals. It has an extremely negative charge to it and a body with alot of inflammation has a strong positive charge so apparently the Zeolite helps reduce that positive charge and neutralize it. Cowden offers Zeolite in his protocol. In reading some Lyme books, some practitioners make mention of it but to be honest I just wasn't so sure myself. I took it about a month ago, and felt a strong Zen like feeling from it. Just peace and joy. I also felt quite tired and I had a headache the first couple of days. Detox most likely. I guess I was taking it a few times a day then. Right now I am squeezing a half lemon and then mixing a half teaspoon of Zeolite Pure in it and it is actually quite nice and I drink this once a day. The Zeolite is without taste but adds a little bit of creaminess to the drink. Just thickens it a tad. So I think that is really helping my detox as my body is not as overwhelmed with toxins as the Zeolite is binding them.
I just added in Tinidazole today and the last time I took that it made me anxious. I was nervous to add it in but so far so good. I'll see in a few days if I get that reaction. If I don't. I will be so happy.
Lastly, when my doctor first started me on Lyme treatment in 2011, she put nystatin on my protocol. I gladly took it as yeast became a problem for me at the get-go with the antibiotic treatment. I took it and had intense, INTENSE, bladder pain that day. Searing to be exact. I took it again the next day and same thing. I didn't take it the next day and I was fine. Took it again and the pain came again.
Fast forward to this month, August 2013. I had taken the doxycycline and was doing pretty good. No major out of body experiences like the last time I took it (where I felt like I was a floating balloon (weird, I know!), was floored with nausea, headache, etc). I had vibrations, stabbing pains, ear hearing going in and out this time and other symptoms as well, but everything I can handle. So I added in the Rifampin, same stuff - more vibrations - especially in my feet but no major anxiety or surreal symptoms. So I thought, wow, I am doing WAY better than ever before. So I took the nystatin because I was having yeast issues again and the result? No bladder pain!!!! So something has changed. I suspect, some bacteria that was in my bladder has been eradicated by the Buhner herbs that I took for 6 months.
Which leads me to feel? ENCOURAGED! I felt like I was losing so much ground just treating with herbs while I was out of the United States. I was feeling embarrassed to get back on this blog once I started up on my medications again and say that last year was a failure and that unfortunately I had stopped my treatment again. We had some intense transitions this year and it was critical for me to be there 100% for my kids as my husband had to travel with work. It was absolutely the worst timing. I was so discouraged. Feeling like I was making no progress. And yet, it seems that I have. I don't want to say everything is going to be smooth sailing forward but I am interested to see how this goes.
I still have alot to work on. To recover from. Losing 100 pounds is a start. Yes, I weigh double what I did 12 years ago when I said "1 do" and it was gained in the past 4 years. There is alot of shame for me in that even though the disease was the impetus for my current state. I have muscle pain and have had some really intense reactions when I tried to start an exericse routine (tremors, complete loss of strength going out of my body, etc). I started malic acid not that long ago and couldn't believe that I could walk up the stairs more than 2 times a day without being exhausted.. Now I walk up way more. I never realized how very tired my muscles are until I felt how it should feel. I should add, I walk around alot downstairs...but going up the stairs had been tough. I really noticed how good I felt when I was on a walk with my kids to the park and when I was walking back up the little hill to our house, I felt no pain in my legs. I am used to laboring up the hills and pushing each step.
There is so much to write. But I will say this one thing. My husband and I have made a pact that no matter where we move I WILL NOT STOP my medications, herbs, no matter what. We now know that the stress of moving is a deal breaker for me and so no matter what, I will not stop treatment whatever that means. I know that me being in treatment is so much better for the kids in the long run, but in the short run, it is hard on them. It was critical for me to 'be there' for them integrating into a new school half way through the school year in a new coungry. Anyways. I know I kind of rambled out my thoughts.
So right now. I am feeling pretty grateful. Grateful that I DID MAKE PROGRESS and amazed at the power of those herbs that seemed to really help me deal with this disease. That's all for now.
PS - Can I just say, I am going through editing this and I am noticing a million errors - I think I fix them all and then I find another! So sorry if I am confusing to read!
So why no anxiety? Well, I can think of two things. One - I did the Buhner Herbs (Andrographis, Cat's Claw and Japanese Knotweed and Smilax) for 6 months and then I dropped off as I had to quarterback an international move with my four kids and massively busy husband. Anyways. So that would be one reason why I may not have the anxiety anymore. Two - I just started taking Zeolite about a month ago. I have been really unsure about adding in this supplement to my repertoire of lyme supplements because in it's substrates it actually has aluminum. Because I am not a science person, I guess that scared me. A talk with my mom was reassuring though, as she explained that Salt (Na+Cl) is safe when combined (and we eat it all the time) but is not when it isn't combined. So Zeolite is fine in the tightly bound chemical structure it is in. The reason I started taking it was that I kept reading about how ammonia is a huge 'neurotoxin' in lyme. In fact, Jernigan believes it is the primary toxin that Lyme gives off in the body. Zeolite is used in fish tanks to bind with ammonia and clean the water. It also binds with heavy metals. It has an extremely negative charge to it and a body with alot of inflammation has a strong positive charge so apparently the Zeolite helps reduce that positive charge and neutralize it. Cowden offers Zeolite in his protocol. In reading some Lyme books, some practitioners make mention of it but to be honest I just wasn't so sure myself. I took it about a month ago, and felt a strong Zen like feeling from it. Just peace and joy. I also felt quite tired and I had a headache the first couple of days. Detox most likely. I guess I was taking it a few times a day then. Right now I am squeezing a half lemon and then mixing a half teaspoon of Zeolite Pure in it and it is actually quite nice and I drink this once a day. The Zeolite is without taste but adds a little bit of creaminess to the drink. Just thickens it a tad. So I think that is really helping my detox as my body is not as overwhelmed with toxins as the Zeolite is binding them.
I just added in Tinidazole today and the last time I took that it made me anxious. I was nervous to add it in but so far so good. I'll see in a few days if I get that reaction. If I don't. I will be so happy.
Lastly, when my doctor first started me on Lyme treatment in 2011, she put nystatin on my protocol. I gladly took it as yeast became a problem for me at the get-go with the antibiotic treatment. I took it and had intense, INTENSE, bladder pain that day. Searing to be exact. I took it again the next day and same thing. I didn't take it the next day and I was fine. Took it again and the pain came again.
Fast forward to this month, August 2013. I had taken the doxycycline and was doing pretty good. No major out of body experiences like the last time I took it (where I felt like I was a floating balloon (weird, I know!), was floored with nausea, headache, etc). I had vibrations, stabbing pains, ear hearing going in and out this time and other symptoms as well, but everything I can handle. So I added in the Rifampin, same stuff - more vibrations - especially in my feet but no major anxiety or surreal symptoms. So I thought, wow, I am doing WAY better than ever before. So I took the nystatin because I was having yeast issues again and the result? No bladder pain!!!! So something has changed. I suspect, some bacteria that was in my bladder has been eradicated by the Buhner herbs that I took for 6 months.
Which leads me to feel? ENCOURAGED! I felt like I was losing so much ground just treating with herbs while I was out of the United States. I was feeling embarrassed to get back on this blog once I started up on my medications again and say that last year was a failure and that unfortunately I had stopped my treatment again. We had some intense transitions this year and it was critical for me to be there 100% for my kids as my husband had to travel with work. It was absolutely the worst timing. I was so discouraged. Feeling like I was making no progress. And yet, it seems that I have. I don't want to say everything is going to be smooth sailing forward but I am interested to see how this goes.
I still have alot to work on. To recover from. Losing 100 pounds is a start. Yes, I weigh double what I did 12 years ago when I said "1 do" and it was gained in the past 4 years. There is alot of shame for me in that even though the disease was the impetus for my current state. I have muscle pain and have had some really intense reactions when I tried to start an exericse routine (tremors, complete loss of strength going out of my body, etc). I started malic acid not that long ago and couldn't believe that I could walk up the stairs more than 2 times a day without being exhausted.. Now I walk up way more. I never realized how very tired my muscles are until I felt how it should feel. I should add, I walk around alot downstairs...but going up the stairs had been tough. I really noticed how good I felt when I was on a walk with my kids to the park and when I was walking back up the little hill to our house, I felt no pain in my legs. I am used to laboring up the hills and pushing each step.
There is so much to write. But I will say this one thing. My husband and I have made a pact that no matter where we move I WILL NOT STOP my medications, herbs, no matter what. We now know that the stress of moving is a deal breaker for me and so no matter what, I will not stop treatment whatever that means. I know that me being in treatment is so much better for the kids in the long run, but in the short run, it is hard on them. It was critical for me to 'be there' for them integrating into a new school half way through the school year in a new coungry. Anyways. I know I kind of rambled out my thoughts.
So right now. I am feeling pretty grateful. Grateful that I DID MAKE PROGRESS and amazed at the power of those herbs that seemed to really help me deal with this disease. That's all for now.
PS - Can I just say, I am going through editing this and I am noticing a million errors - I think I fix them all and then I find another! So sorry if I am confusing to read!
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