Hello from St George Klinik!

magoo2 said...
Not sure I would call American medical system evidenced based-FYI spirochete in your blood is clear evidence. Evidence the American medical system chooses to not look at.

That's like only looking East and claiming that there is no such thing as a sunset.

Amen!

Scooterbuglyme— I highly highly recommend coming. I’m happy to speak with you live when I return or we can email privately. My 11 year old daughter is already seeing benefits. She actually read a book for pleasure yesterday... and retained the information! This is something she hasn’t been able to do in a full year. Today she is having local hyperthermia on her brain just to be sure they’ve gotten everything out of there. Seeing her smiling again and happy is ssssooo worth it. For others, improvements can take time. I think I fall into that category. Nothing noteworthy yet on my end. Definite herxing.

Oh, good luck! I’m so happy to hear that your daughter is reading again for fun. What a huge win! I certainly hope you stop herxing soon and get to enjoy some benefits too. I can’t wait to hear more about it. Trying to convince DH that I need this treatment will be so much easier if other people share good results, and I really hope just for your sake that you can kick this disease.

Hang in there, and keep us posted when you feel up to it. You can do this!

Sending tons of good vibes to you and your daughter!

So I had a lot of concerns about tolerating the heat. They are very strict about assessing your health issues before they accept you as a patient. They won’t accept you if their on any red flags on their end. I know several people who were turned down as patients. And then when you arrive, they put you through a lot of tests to be sure you are solid for treatment: echo, ekg, lung function, blood work, etc. During the treatment, every aspect of you that can possibly be monitored is monitored. And you have two IVs going at once with a constant flow of fluids and electrolytes. At any point if things start to look “funny”, they cool you down and take protective measures. They are extremely careful.

Here is my two cents for what it’s worth: this disease effects everyone different. Everyone in this clinic right now looks completely different from the next in terms of symptoms yet we all have lyme. We all have responded to different things... some have worked for some and not for others. I do not at all think hyperthermia is the magic bullet for everyone. I don’t even think it’s a magic bullet. There is no quick fix. But... I think for a good number of people, it propels them forward significantly in their recovery. From those who I’ve talked to who have maintained health for many years now after hyperthermia, it’s been a constant emphasis on their health, eating clean, regular detoxing still to this day, sleeping well, etc.

It’s a very personal decision what road to take and not one road is the right road for every person. And time will tell how things unfold for me. But I can say for certain is that I am beyond impressed with the level of care in this clinic, the comprehensive program, all the different treatment modalities they use beyond hyperthermia, the nurses etc. And scientifically... the treatment makes 100% sense in my mind.

But again, there is no one right path to take. I sssooo wish it was that simple!!

so has it helped your symptoms or not?

Done with treatment! Had my IV line pulled this morning finally. It’s been a long couple of weeks and I can not wait to get home! My daughter continues to do amazing. It’s literally been my greatest blessing to see her come back to life. I pray that it lasts. Time will tell. I had my second hyperthermia two days ago so I’m beyond wiped from it. I’ll keep you all posted.... I’m praying for the best for myself too. This hospital is really a top notch facility. I have zero complaints. And if I get better from being here, I will spread the word to anyone who will listen.

I will for sure. I’m wondering myself. Definitely herxing and feeling a lot of scary symptoms I haven’t felt in a long time. Trying not to panic. I’ll keep everyone posted

Can't wait to hear an update. Safe travels home!

Evanston1 said...
Hi everyone.

Its been a very long time since I posted and I wanted to give you an update post Germany. My daughter has continued to do amazingly well. She is totally back to "normal" since returning from Germany. She's been back on her travel basketball team, playing daily, working out, etc. She is the same kid she was before she became sick. Almost one year later, I am here to say that Germany was a miracle treatment for her. She went from being absolutely non-functioning on continuous antibiotic cocktails to zero meds with all of her energy and mojo back. She bounced back really quick after the treatment.

For myself, I am 80% back to the person that I once was. I've developed some significant sensitivities to mold... which is a major problem. Dr. H. told me that ⅔ of his lyme patients develop a complete intolerance to mold. So that has been challenging for me since there is mold everywhere. Other than that, I've been mostly really good considering where I was at before Germany. The only major major downside to the hyperthermia treatment is that I've lost about 60% of my hair. I used to have massive hair and it started falling out in clumps soon after Germany. My doctors have said its from the heat. Pretty depressing.... but hopefully has stopped falling out completely so hopefully that is the first step towards regrowth.

The treatment only kills Lyme. So if Bartonella or Babesia are your main issues, Germany will not take care of that.

Just wanted to give everyone the update. So life is really good for the most part with some questionable days sprinkled in from time to time. I am now on subcutaneous IG due to very low IGG levels (secondary acquired immune deficiency is the technical term). Fingers crossed for no relapse and continued health and feeling good. But I know it can all change tomorrow with these crazy infections. Hope you are are doing ok and hanging in!

This is great news, Evanston! I knew that your daughter was doing well, but thought it hadn't been very effective for you. So good to hear you're doing so well.

So, if someone has Bart and/or Babesia...I wonder if it would still be worth it to knock back the lyme.

How long are you on the IG?

Evanston1 said...
Hi everyone.

Its been a very long time since I posted and I wanted to give you an update post Germany. My daughter has continued to do amazingly well. She is totally back to "normal" since returning from Germany. She's been back on her travel basketball team, playing daily, working out, etc. She is the same kid she was before she became sick. Almost one year later, I am here to say that Germany was a miracle treatment for her. She went from being absolutely non-functioning on continuous antibiotic cocktails to zero meds with all of her energy and mojo back. She bounced back really quick after the treatment.

For myself, I am 80% back to the person that I once was. I've developed some significant sensitivities to mold... which is a major problem. Dr. H. told me that ⅔ of his lyme patients develop a complete intolerance to mold. So that has been challenging for me since there is mold everywhere. Other than that, I've been mostly really good considering where I was at before Germany.

Evanston,

Thanks for updating us with such good news. Someone posted recently asking about the clinic, and I wondered how you were doing. I'm pleased to hear you are up to 80% and your daughter is back to "normal." Hooray!!!

Very interesting what you shared about mold. I'm assuming that's THE Dr. H you're referring to. Wow! Two thirds of his patients develop intolerance to mold.

I have it. I'm not sure exactly when I developed it, but I believe it occurred some point after my symptoms went full blown in 2015 following a respiratory infection. I was diagnosed with CIRS from mold in Sep 2016 after seeing a Functional MD.

I have strong chemical sensitivities, as well. Just recently, I was thinking about all that and wondered if the mold sensitivity is really just part of the chemical sensitivities, as mold produces mycotoxins and water damaged buildings have microbial volatile organic compounds (mVOCs). I find myself reactive to the smell of rain, too. I googled that recently and found the smell is a toxin emitted from soil bacteria. I do have one of the multi susceptible HLA-DR/DQ haplotypes, so I'm vulnerable to all biotoxins.

Wishing you well and a continued recover (and hair regrowth)!!! Please keep us updated again in the future. God bless.

Hi Girlie.

So glad to see you are still around! Yes, I think its important to knock out lyme if you can and that's where St. George is most useful. After that, you can really focus on the co-infections if you haven't knocked those out before getting to addressing Lyme.

I'll be getting IG indefinitely. These infections really did a number on my IGG levels and subclasses. The infections, along with mold exposure, really knocked my levels way down. At one point, my white count was less than 2. Its back up to almost five now. Wahoo! Dr. H is completing a study on the long term implications these infections have on IGG levels and immune status.

Mold is a gigantic nightmare. For people who are not getting better, I strongly urge you to look at your surroundings and do some mold testing. We had ZERO visible mold. None. But I started noticing a clear pattern.... when I was home, I had major pain. When I was gone, pain would go away. We had a dog (albeit old dog) near death and one of my daughters was constantly having head to toe hives. We ultimately had my house tested and we had very high levels of airborne aspergillus due to an improperly installed drain tile system in our basement. We left our beautiful home and everything in it last April and within a few days, our dog was reborn and my oldest daughter hasn't had one hive since.

Lots happened in between and I won't go into all the dirty details other than to say.... mold is BAD. Like a super big deal for many of us with lyme and most of us are clueless. I certainly was.

But if you aren't getting better after years on antibiotics, Id look into your house. The mold thing is totally legit and scarier than lyme, in my opinion. WAY less known about that than lyme... and that says a lot.

Hope you all are doing ok!!!! Continue the fight!!!!