Considering treatment - a scared newcomer

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Hello all,

 

first of all, I want to say that I am so grateful for finding such a great and strong community of people, who actually seem to be on their right path to health... I am scared to death, depressed and it helped a bit. I have few questions I can not ask dr. Brizman personally at the moment and hope to find some answers here. I would also like to share my story in a nutshell, just to clarify why am I having such a stupid questions and don´t just go and ask Matia stright away:

I am from the Czech Republic (so, please excuse my language mistakes), and I just finished the college a year ago, being in depths (I had to take a loan so I could study, in spite of the fact that I had occasional jobs during my studies of course). I hoped to find a job quickly, be on my own, make a career and finally get better (separate from my family as much as I can as they were constantly pushing me down). Then this nightmare started. I had an intercourse (protected!!) with one man, then I got some vaginal discharge (thought that could be candida, something common)... But then came the strange feeling after urination (sharp pain in my urethra after I peed - but like two minutes or so after I peed, not straight away, which is so strange). Then came burning in the whole area and more vaginal discomfort and as it got worse, I went to my gynecologist. He just laughed and prescribed some antibiotics (without any tests), and said to me that I could not have any STD, just take it and go away, so off I went. Those antibiotics did not help at all and made me horribly sick (headache, nausea, I was shivering all the time) so after few days I had to stop. Then all the horror started. It won´t just go away, so I went to my practicioner. She found nothing in my urine, but gave me another antibiotic. Things got even worse. Then I went to the urologist. She found streptococcus agalactiae, massively, both in vagina and urethra. Gave me another atb. Again, worse, allergic reaction. Another urologist. Long story short - after some painful, invasive examinations they found I have active HPV infection, strep B, chlamydia pneumoniae and lyme disease - all that currently active, not just traces. Gluten intolerance. They told me that probably I have ureaplasma infection, but could not find it (broth culture is not available here as far as I know). My bladder got worse and I got worse - could hardly get out of bed. I was put on several antibiotics, like 12 in a row. Then chemical antifungals. I lost my job. I almost could not see, because my eyes went so dry - it was like having sand in them all the time. I could not keep balance - something happened to my brain, I don´t really know what. Strange tingling in my feet occured, I could not sleep because of the pain and that. Cystoskopy result is "leukoplakia on the trigonus"  they told me it is rather normal and that they do not know what causes my pain, and that I should eat antidepressants (in fact, they pushed me strongly into it). I studied psychology, so I think that I have an insight into how one´s mind could be connected to the illness. I know that my family has its role in my body/mind weakness. But I knew that those pills won´t help me with my illness and that´s not a mental disease I am having. And I was scared to take such a medication while having neurological issues. I know far too much how these drugs work. But, I developed serious depression and suicidal thoughts, which never fully went away.

Then I stopped seeing doctors (they mostly even do not know that something like ICS exists, and I was in denial I could have it myself that time) and tried to heal myself. I found that fresh vegetable juices might help me, so I started them in spring. Also, I started to see an acupuncturist (he is from China and is a doctor of TCM, but he works in massage center so he does not use herbs). I tried some herbs myself and they helped a little (nasturtium helps the most, oil of oregano is fine, too). I have been on anti-candida diet for almost 7 months. It also helped tremendously regarding medication consequences, although some of them stayed - my eyes, some minor digestive problems, fatique which got gradually better after the juices. But my bladder is horrible and won´t get better. At the beginning, it was only in my urethra (burning and that sharp pain after urination). Now I have all this plus dull pain in my bladder and urgency all the time. It is surely much better than when I was on antibiotics, but that was really excrutiating pain. 

One hopeless day, I found this site and was amazed. It seemed great - I am not alone, someone understands. There is a treatment. But, oh my. In L.A.?! I am completely on my own. I have no financial or emotional support from my family. This I can´t change. Even if they were supportive, they don´t have the money.

I work half-time and even that is too demanding for me. I am in debts, because my illness already costed me so much (I tried plenty of naturopaths or homeopaths... And acupuncture sessions are incredibly expensive, I can only afford them once a week or two). I have lost most of my friends - I never go out, ever. I just go to work and back, exhausted, I don´t understand their worlds anymore and they don´t understand mine. That´s problably natural, in such situation. I can´t have sex or any relationship. But, I have no idea how could I ever get to L.A. and pay for the treatment. I can´t afford more debts. Sorry for this long story, but I am exhausted, depressed and desperate. 

I have two questions and would be very grateful if you could answer... First: Is it really essential to travel to L.A. to became a patient? Could I just do it long-distance from the beginning (via skype or something like that?). Tickets from Czech R., are just so expensive... And I do have an idela how expensive is this treatment for east-european girl without proper job. And - does she treat people with diagnosed bacterial/viral infections - chlamydia, lyme disease, strep B, HPV?

Second thing... I tried to start with the diet. I stopped my juices. I was a vegetarian for years and actually felt really well on that diet, but I thought well, maybe i was so wrong!! So I started List 1 and eating meat (including organic red meat). Maybe I am weird, but protein (egg, meat) with every meal is just too much for me, even in smaller amounts than recommended. It´s not only that I do not like meat from my childhood (I just do not like the taste no matter how well is it prepared), I can get over that if it hepls. But my intestines said no. My stomach feels sick and I started to be TERRIBLY constipated. When I drunk those juices, everything was nice and regular. Now I won´t go, 3 days, 4 days... Everything is worse - bloating, constipation, fatique is back. Depression worsened, anxiety is here, I feel tired and empty. I tried poop soup (ugh) and magnesium, nothing helped. Is there anyone else having this problem? Any advice, please? I used to eat lentils and beans to get protein, but I understand that it is not good while having IC. I miss my juices. I don´t know what to do. Coffee might help, but it makes my bladder worse.

Thanks a lot for reading this. And for your patience.

Aya

 

deir's picture
deir

I don't have a lot of time right now but I just wanted to quick reply! I hope you can find a way to get here. One thing I was thinking- since you aren't used to eating meat- maybe you should gradually keep adding it in to your meals. It is integral to healing but it might not be  the best for you to make a drastic change all at once. I would definitely stop juicing- every gut healing regimen I've read about saves juicing (if they include it all-dr b doesn't reccommend it all I think) for later when some healing has begun.
(((((HUG))))) you've really been though the wringer. I am sorry

Aya's picture
Aya

Thank you ladies so much for your quick answers!
 
Tinkerbell, thanks for making it clear. Currently, I do not have any money to save, I struggle to buy enough food every month, as I can not work full-time (I am also studying as a Ph.D. student, and I am still considering that I should quit, but it meant so much to me...). I´ll see if I can handle it. Anyway, I am seriously thinking about taking a loan, even if I am not sure I would be able to earn the money in the future. It is risky and I can lose a lot - if this won´t help, I would be in even deeper debts and with no future... Well, that´s my decision to make. But a very hard one. Every time I read here that someone is not any better after more than six month so, I say to myself - well, there is no hope, really, you will just spend money and get even worse because of the money... I have to consider carefully. Maybe an inappropriate question, sorry for that, but I´ll try - how does it work for you? Would you recommend me to try it?
 
If I lived in the US, I would go without hesitation. What is holding me back is cost of the whole thing, that is much higher if you are from Europe. Shipping costs are quite high and the duty office often makes problems and you have to pay the duty of course - more money... Every time I ordered something from the US I had to declare and declare and it took ages to get my stuff... And it was demanding and stupid bureaucratic procedure. I guess that it would be even worse with herbs - they will consider them as pharmaceuticals in the better case. :) When I read about switching the herbs like every second week or so - well, I am not sure if that would be possible in my case. 
And thanks for your advice about hygiene and cleaning products. That is complicated too - everything, even natural products, contain some coconut or soy. Someties its bio-soy:) I tried to order something from amazon, but they do not ship such stuff to Europe. I can get non bleached pads, etc., but other things are a problem.
 
And thanks for your advice about meat, Deir. I will try that!! I can imagine eating meat three times a week or so, sometimes eggs, but this is way too much for me. I am sure that it is the meat what makes me constipated. I do not really believe in any kind of special diet, but blood type based diet really hits the spot in my case... I am blood type A and I always avoided meat, because I did not like it and it made me feel sick and constipated. I will have to figure out somehow. I found following here:
"The ICAMA has not had great success in treating vegetarians. However, some advancement has been made regarding that issue recently."  
Please, do any of you have an idea what could dr. Brizman mean by "advancement"? That gave me a little hope that maybe I do not have to eat such an amount at least...:)
 
And yes, I will not make juices anymore, until I am ok, which is not near I guess...
 
THANK YOU SO MUCH, you are wonderful... I wish you all best, and a lot of strenght to handle this.
 

deir's picture
deir

Aya- I am one of those who hasn't made huge improvements in 6 months but let me be clear- my worst day is nowhere near some of these poeple's good days! From the way you describe- i don't feel close to as bad as you.  I am begining to think that if I had been worse I would see huge improvement. It is like a person who weighs 400 lbs going on a diet- they would very quickly lose 100 lbs but for someone who weighs 130 and wants to lose 20- that takes forever-
 
There is HOPE!!
 
(((HUG)))

SarahC's picture
SarahC

Aya, so glad you've found the site. I'm a long-distance patient of Dr B's - I live in the UK. Getting out there was stressful and expensive, and buying the probiotics is definitely expensive, month to month. I'm coming up to six months in treatment, and I'm not 100% better yet - in fact, I'm in a flare at the minute, which has worsened since adding in a new probiotic, so I'm easing back on that.
BUT.
In the six months I've been in treatment, I've seen great improvements. My frequency was under control with just the diet, and my urgency now is very, very faint, and intermittent. I still have pain and irritation sometimes, which is scary when it happens, as mentally I'm not completely stable yet. But in the last three months I've had periods - five days in August, 10 in September, two weeks in October - when the whole thing has receded into the background, and I've had days without symptoms. My life is manageable now, and even enjoyable on the pain-free hours and days.
 
I realise taking out a loan is  HUGE commitment, and that's your decision. It's also worth bearing in mind that this could be a two- or three-year commitment. But Dr B is the most supportive healthcare professional I've ever met, and she KNOWS this condition. I don't have to worry my way through this any more - she tells me what to do, and I do it! It's a massive relief.
 
I'm feeling a bit wobbly at the moment because of the flare - Dr Brizman says it's due to the PTSD aspect of the illness; it's very difficult not to feel mentally overwhelmed when the pain comes back. But in my rational mind, I know I'm getting better and this flare will pass, and more good days are on the way.
 
let us know if there's anything we can help with. I also remember there was a thread where one of Matia's patients in LA offered to have new patients to stay, to help with the cost, so you could look into that. Really good luck to you with whatever you decide xxx

SarahC's picture
SarahC

and Tinkerbell I am so thrilled you're feeling so good! that's brilliant!

davida's picture
davida

I am romanian.I have ci for 6 years.

Aya's picture
Aya

I just wanted to say thank you, all of you. I am currently trying to gather the resources, information and courage.:) I guess I should go to L.A. as soon as possible.