Forums:
Vent:- Christmas time was the worst flare I have had in a long time. Physically and mentally I was a wreck.
Hope:- being as bad as I was helps me to see that although it is barely noticeable day to day- I must be improving because I haven't felt that bad ( for days on end)for a long long time. I always think of what SarahC said it is like filling up a pool with drops of water and one day the pool is full.
3 month mark
Hope: Had my call last night w/ Dr. B and she gave me so much positive hope! I got approved to move to List 3 (although I have barely touched list 2 for my fear of flaring). I also had my hair colored for the 1st time with no flareup. Mild discomfort. the pain is lessoned.
Vent: too tired right now, didnt sleep well and will try to get some zzzz's tonight. Oh, I have been peeing more frequently, especially at night. Dr. B says is part of the waxing and waning... and will only get better...
vent - i'm so sick and tired
vent - i'm so sick and tired of dealing with this vaginal pain.
hope - i am getting better little by little. i just need to give it some time and be patient.
vent: I am so bored with
vent: I am so bored with being such a vigilant worrier. It would be such a relief to think about something besides IC. And I would really like to get over this constipation business.
hope: I seem to be tolerating cooked onions quite well and so my meals have become MUCH more flavorful. Carmelized onions on a hamburger is my new favorite thing! And I was also able to have sex for the first time in 4 months and I didn't flare!
Vent: I'm so tired of waking
Vent: I'm so tired of waking up with burning, day in and day out, wondering when this will all be over so I can "move on with my life" and think about the possiblility of having kids, eating some chocolate once in a blue moon, or having sex without worry of a flare up.
Hope: After a few agave cheats and treats around the holidays, I noticed a much calmer response from my bladder and fewer facial breakouts from dairy. Could this mean the leaky gut is beginning to heal? I do hope so.
Flygirlsam - are you getting better?
Sorry to hear about your vent. Have you been in treatment for a while now? Are you improving? Where is your burning?
Vent - Rhodiola tastes AWFUL!
Vent - Rhodiola tastes AWFUL! Like someone put old, dusty potporri in a food processor. I was taking it in the cap because it was sooo bad but Matia says I should really try and get it down with out the cap. And I always found it funny when someone would whine about the taste of goldenseal and oil of oregano. I never found either of those to be that bad. Anyway, I'll live but just know it's gross if you have to take it.
Hope - I never thought it would happen but I have been sleeping through the night. I think I have the past 3 nights. Matia always asks me if I am sleeping through the night and I never was and I really never thought I would so this is great progress. Plus after 2 months of feeling pretty much the same my bladder seems to be doing much better the past nine days!
Great Christine. Sleep is
Great Christine. Sleep is important!
flygirl sam- I think your gut is definitely beginning to heal. That is great.
Hope- I am on a good run! I can't believe it. Even though December had a the worst flare ever- the actual number of good days was still more than bad so that is really good. It's hard to remember that when the bad spells are really bad.
Vent- still miss wine. Nothing else.
Vin-Have been in treatment
Vin-Have been in treatment 2.5 years but haven't been 100 percent strict on the diet (pretty close though) and my flying schedule, we think, is much to blame for my slow progress. I have made definite improvements in so many areas since starting, but the progress seems so much slower now than it was at the beginning. My burning is in my bladder and urethra very early in the morning (the lymph is stagnant and all the toxins are settled there I guess). I also have burning when I drink large amounts of water and sometimes after meals. I know there are probably things I am eating that are bothering me, but I've been doing this for so long that I just tolerate the minor burning during the day so that I don't have to go backwards on the lists. Like, I know almonds bother me slightly and apples too, but I eat them anyway because they are just so convenient for my traveling and I can't think about giving them up. They were approved a while back for me, but they still aren't perfect. I just can't figure out why the early morning burning isn't letting up. Matia says that's the last to go usually as it is a sign of the large intestine still being unbalanced. It's so frustrating. I can sleep through the night though which never happened before.
she said to try it
She said to try it to see if it helped (it hasn't). Stuff I could eat before--tomatos, almonds etc. started bothering me.
vent- what's worse than IC?
vent- what's worse than IC? Ic and a stomach virus and 2 kids with a stomach virus. I'll say no more.
hope- I am doing better overall- I am feeling much more stable.
Deir
I am praying for you!!!!! You poor thing. Hang in there. All I can say is I know how hard that is!!! Better days are ahead.
Sorry you are sick...and here
Sorry you are sick...and here I am at home with my first cold since I got IC.... suddenly I feel much better about my situation. I hope you and all your kiddios are feeling much better!
Vent: after eating so well
Vent: after eating so well and teaching others how to eat well to stay healthy, I am home sick with bronchitis for the past week and it isn't getting better. Matia is treating me with herbs but nothing seems to be helping. I am wondering if cheating over the holidays with sweets here and there (not a lot though!) could've derailed me this much after 3 years of treatment? I feel like a hypocrit living and preaching this healthy ifestyle and now not being able to get off my couch for a week. I worry that i am majorly regressing as my last bronchitis event was just prior to the onset of my IC before i knew matia. I really have not been sick much since working with her (a minor cold and some stomach issues, that is all).
Also, I had an anxiety attack last night after I think I took the herbs too close together. My heart was racing and i could ot stop tossing and turning. Then I had a nightmare that I was going to end up at the hospital for this and when they asked me what herbs I've been taking, I can't really say because they are Matia's special formula and I have no idea what I'm putting in my body, I just trust her. And all the doctors and nurses were standing around rolling their eyes and I was begging them not to give me antibiotics. Ha!
Does anyone know what the heck is in Ear, 48 and 49 anyway? I'm also on GML and ZGL by plum flowers.
Hope: I have not had bladder burning (my biggest, toughest hurdle) for the past 3 mornings. I find it interesting that coming off my normal protocol for this bronchitis would make me feel better in my bladder? I'm completely mystified but it's been a nice break from that annoying aspect.
Cold herbs
My bladder also feels much better when I am on a cold treatment protocol. Once the cold is over, my bladder symptoms return The body is so interesting.
Still on the bronchitis
Still on the bronchitis protocol but the morning burning has returned. Oh well. I got 3 glorious mornings. The bronchitis is very slowly easing up. I am going on day 9 of this thing and have left my house 4 times. I hope nobody else ends up with this! Matia has been wonderful getting me through it but it is so slow in clearing up. I finally feltl a little more energy today, I was able to shower, cook a bunch of food, and even take a short 15 minute walk outside. Had to take a nap later on, though. Ha!
The last time I had bronchitis was 4 years ago exactly, a few weeks before the onset of IC. I wonder if this is a sign of regressing or rather a sign of a healing crisis? Like I'm going back through past illnesses as I get closer to healing? I hope it's the latter and this is some sort of die off/cells clearing out!
Hi Sam, Hope you are getting
Hi Sam,
Hope you are getting better and over your bronchitis. I had similar fears everytime i get sick, i am constantly worrying about it turning into pneumonia or something and that i'd b forced to take antibiotics. Thanks to matia, since october i overcame flu 3 times, nasty ones too where i had to stay home for 10-17 days. Interestingly i also had a lot of strep throat, which i used to get as a child and why i started antibiotics so early on. Mati believes that it might be die off, since i used to get sick this way before, die off is presenting it the same way. I've been on ear and gan mao to boost the immune system but just thought to share with you that matia doesnt think this as regression. Hang in there and feel better soon.
Wow, thank you, that is
Wow, thank you, that is really good news and interesting about illnesses remanifesting now as we are healing. I'm so sorry you've had the flu 3 times! Yowzer! This has been no fun and the GML is so tough on the bladder as you know, so I hope this is it for me. I live in a high danger tick/lyme zone so I usually end up on the GML once a year anyway from a tick bite. Hoping I don't have to go on it this spring again when the nasty things are out. Thanks again for your encouraging words.
I was just re-reading through
I was just re-reading through this thread and saw my last post about fearing a tick bite again. Well, it happened this week and I am back on GML and Ear along with goldenseal (ick).. I am so sad that I have yet another "thing" to interrupt my bladder protocol. Bronchitis in Feb, now this. I was back on list 2 and doing a cleansing protocol and finally starting to see an inch of progress and now I've had to interrupt it all and switch to these herbs which semi-flare my bladder. Oy! I thought I might even have to go on antibiotics for this tick bite but so far so good, no rash. Fingers crossed.
Does anyone have experience with Lyme? I am in such a funk over this tick stuff, it kind of makes me want to move! It's really scary and hard to decide whether to do the antibiotics. Matia has me on the herbs for now but I honestly think it would be way worse to get Lyme than to take a dose of antibiotics with a leaky gut. And I am very much against antibiotics! But the risks of Lyme seem to outweigh the benefits of not taking the drugs. My doc told me, though, I don't have to take them necessarily unless I get the bulls eye rash or develop symptoms. Ugh, neither one is a great scenario really. Anyway, just venting my frustration with all these interruptions in my healing progress. Thanks for reading!
How are you feeling, Sam?
I hope the tick bite didn't develop into anything. I have not had a tick bite, but I don't blame you for being concerned. I hope Matia's protocol is working well for you and keeping your bladder calm.
ticks
Ugh, I dread having to deal with a tick bite and scour my body every night trying to avoid it, I'm so sorry you're dealing with that. I think about this often because my sweetie has chronic lyme and it is so, so devastating. I at least have hope and have made progress with Matia, it seems like he's just getting worse and worse no matter what he does and who he sees. Do you live in New York or Connecticut? I live in Maine and lyme and deer ticks are becoming increasingly prevalent.
The MD that I used to see who is also a homeopath said to me that even "alternative" medicine people are quick to recommend antibiotics when dealing with lyme because it is so hard to treat once it's in your system. I think it's a real quandry as to what to do. What does Matia say will happen if you take antibiotics? Will it really impede your progress significantly? It's funny, I've been dealing with strep throat since late march and Matia has had me on GML, Ear, and Goldenseal just like for a tick bite, and I believe a lot of the antibiotics that they give for lyme are the same that you'd take for strep. Since it took so long to clear, I was considering taking antibiotics, too, and Matia said she "wouldn't be offended" if I decided to do that, which I thouht was funny. Mostly, I don't want to take them because it may cause a setback in progress, but I am curious as to exactly what can happen.
Anyway, I hope your bite has subsided without any bad effects.
Best wishes,
Claire
Flygirlsam, I am praying
Flygirlsam,
I am praying for you that the bite will not turn into anything. My daughter had a tick bite once, but she was totally fine. Let us know how you are doing.
Lyme disease really scares
Lyme disease really scares the heck out of me. It is about the only other thing i worry about right now. i live in a high tick area too.
Sam- do you search your body for ticks? I know the deer ticks are so tiny. it is very scary. i wish i could be happy and ignorant like most of my friends sometimes
Claire- I am so sorry about your boyfriend! Is he doing alternative treatments like this? Does Dr B treat Lyme?
Sorry for the delay! Thank
Sorry for the delay!
Thank you all for your replies and concern. I sent Matia a photo of my bite and she was concerned and said it was "up to me" if I wanted to do the antibiotics or not. Ugh! Then I spoke by phone to my regular MD back on Long Island. From my description of the bite and when I got the tick off, he seemed absolutely fine with my NOT doing the antibiotics. He is a fairly open minded doc regarding alternative treatments, however in this case, he does not believe herbs will do any good at tacking this awful infection. So I was relieved on one hand that he said he wasn't worried about the bite (based on my description) but also nerve racking because Matia said I should treat it and completely left it up to me. Confusing! She thinks the herbs are comparable to the antibiotic, but I'm not sure she is as well versed in Lyme as most are on the East coast, so I deferred to the Long Island guy. Meantime, after my doc said I didn't need the antibiotics, I did start Matia's herbs just as a precaution (after running all over Sacramento looking for GML which I did not have with me). I also put goldenseal on the bite itself (made a paste) and that seemed quite helpful. It still itches a lot but the rash died down the next day. In the end, the MD said that he would suggest the 2-day course of doxycyclin as a prohylactic in the future and Matia seemed okay with that. It is the 2 week or longer course she dislikes. The problem is there is such a small window to use the 2-day course, he said within a few days of the bite is when you should take that. After that you must do the longer one.
Anyway, Claire, that is so scary about your BF. I am grateful for you sharing that information which helps me think that, in the future, I might really consider the antibiotic. It does sound awful having to deal with Lyme once it's established and untreatable. And my neighbor goes to supposedly one of the top Lyme doctors in the country and still struggles with the symptoms daily.
I am trying to be better about checking myself daily, but it's so hard at the end of the day to remember when all I want to do is crawl into bed. I might start taking nightly showers as a reminder to do a full body check before bed. This is serious business and I do not want to be stressed like this again!
Thanks everyone,
Sam
the lyme...
Hi Sam,
just very shortly on Lyme - because that is also my concern. Docs found some elevated antibodies in my blood and actually, chronic lyme can cause IC symptoms, and every single symptom we suffer can be attributed to lyme really - fibromyalgia, joint pain, bladder pain... So, maybe a lot of patients would be surprised if they had their blood checked.
BUT. I am not writing this to scare anyone off. I am writing this because: I know a lot of people who have lyme and were not helped by taking antibiotics, not even a tiny bit. On the other hand, I know some people who just took a course of atbs and their symptoms dissapeared. And, I know some people who were not helped by atbs, but herbs helped them. Actually, there is a clinic in Augsburg, Germany, that specialises in treating lyme and other chronic intracellular infections, and they use herbs as a component of their protocol (mostly artemisia, but also other herbs).
For me - antibiotics almost killed me and made everything a lot worse. Most of the symptoms I have now is triggered by atbs and I did not have them before starting medication. I guess I am hyper-sensitive to medication and even herbs, but I must say herbs made me feel at least a bit better, while atbs just worse and worse.
As for Matia treating lyme - I asked her directly before going to LA and she told me she had patients with lyme who got better. I think one of them was ballerine (?) I think she mentioned it here on the forum somewhere? Not sure, though. Lyme is so hard to beat, and I do not say I am not scared, but I am quite sure herbs can be very powerful, the Augsburg clinic is full of the best specialists, western MD´s, and even they use herbs.