Your Advice Needed on Next Possible Move

I am reaching out to those on this site because of your experiences, knowledge, understanding and friendship. There are so many on here I consider friends, even though I have never met you.

After so many years of this, I have truly hit a point where I realize living like this is no longer doable. Too many years have already passed living with this, and the thought of being in this condition until the end is not an option. I've tried doctors, LLMDs, naturopaths, herbs, meds, food changes, sleep habit changes, etc.... Nothing is working and nothing is putting a dent into EBV. And despite negative tests, I do believe Lyme and co-infections are still in play, along with some type of autoimmune or auto-inflammatory condition.

With that said, I am very strongly considering going to the Hansa Center In Franklin, TN. It is about a 4 hour drive from my home. While there are no guarantees I will improve there, I now believe there seems to be no answer doing it, basically, on my own. With cancer cleared as a possible problem this week, it just seems time to try something bigger.

The cost is high. They suggest two weeks there, which, in reality, is almost three considering it is closed on weekends. Also, being in a hotel isolated alone for that long does not seem mentally doable. So I am considering trying the one week and see what happens. That would have to be approved by the Hansa Center.

I a m by no means rich, but money really is useless living as I am. There is no doubt in my mind you understand that.

So as "faceless friends," I ask your opinion and understand none of us really knows if it is going to work or not.

Thanks for your thoughts.

That is an odd coincidence. I forgot the new name is Biologix Center. And that was a good article on mast cell activation. I appreciate your input, ko.

running wild,

When I first joined this forum, I thought if I could go anywhere, I would pick Hansa. Since then, I have developed a more negative view of the founder, but that doesn’t mean the clinic is not good. There’s a reason the clinic has a new name. I believe some of the other practitioners broke away from the founder.

If I were in your shoes, I would test for mold before going off somewhere. Did you do a Great Plains or Real-time Lab mycotoxin test yet?

I intensely studied Hansa center as an option for my daughter, Blakeley. I have many experiences and opinions from other Lyme sufferers by email regarding their treatment and outcome there. I even had a very long conversation with a doctor in Kansas at the new Institute for Restorative Health.

Not many talk about it here on the forum but you can go through the old threads and see if you can email people and ask. We decided to hold off for now since we have finally seen some progress but I totally understand your reasoning as an effort to find healing.

I emailed you just so you could respond to me there if you’d like more of the stories I collected.

If I were in bad shape, I'd go see Dr Simon Yu in St Louis.

Georgia Hunter - Thanks for mentioning Dr. Yu. I read a lot about him and his practice last night and just left a message at his office. Have you any experience with him or did you hear about him somehow?

skinny joe - No need to apologize. Posts can go different directions, and it is good if one can help others on a post.

They called it a bone scan, but I believe it was a PET scan. They injected a radioactive solution in me three hours before actual scan. I do believe it was a PET scan, though I didn't know there are different types. I'm waiting on a copy of the results. The oncologist only addressed the cancer aspect for lesions or other abnormalities. But I'd want to see if there are other issues as I do believe autoimmune is involved now.

Girlie - I have seen so many of your older posts and understand how you feel, what you have been through. As I've mentioned, it took 11 years of being told it was all in my head, I've "lost it," and many other negative things before I was finally diagnosed with Lyme. This, despite the fact I was, obviously, losing fat. Of course, I was told I had to eat more.

My thoughts are on everyone on this site as what I am dealing with is no different than everyone else. The part that has been hardest is when doctors have become concerned with possible cancer. This time it was because an orthopedic doctor said he saw two fractures in my thoracic spine. That, combined with reactivated EBV, worried doctors and led to weeks of cancer stress again. And it turns out, after X rays, CT scans, MRI then full body bone scan, there were no fractures. Unbelievable!

The PTSD you mention is correct. It could be called CLSD (Current Lyme Stress Disorder), and it is real. I tried to get counseling twice for it - first time the psychologist wanted to do therapy games, and the second one was drunk. And I'm not kidding about him being drunk. All I wanted was someone to talk with. This site is therapy for so many people, and your time as moderator is so appreciated by many.

I'm just at a point where money means nothing because I can't enjoy it if I have any. NOTHING is more important than getting better, as it will make me a better dad and life will be better. What you mention about concern for relapse is always going to be there with this, but getting better comes first.

I consider you fortunate to have a husband like yours, and he has a wife he is fortunate to have, Lyme or no Lyme. My wife couldn't handle it and left early on. She believed everything doctors said like it was gospel and,despite how strong I had been throughout life and in my 17 years with her, she did not believe me.

That is not for sympathy but rather to indicate the type of man you are married to.

running wild said...
I consider you fortunate to have a husband like yours, and he has a wife he is fortunate to have, Lyme or no Lyme. My wife couldn't handle it and left early on. She believed everything doctors said like it was gospel and,despite how strong I had been throughout life and in my 17 years with her, she did not believe me.

That is not for sympathy but rather to indicate the type of man you are married to.

Thank you.

So sorry about your wife. You have two children though right?
That is a blessing!

If you havent found an expert in dental and parasites go see Dr Yu. I saw him monday.
Most chronic issues have dental and parasites as all or part of cause-most everyone feels better after they address dental and parasites-there may well be more to address.

I went to Dr. O - trained by Dr. Yu. He told me that Yu uses same method of muscle testing (ART). Is that right, Magoo?

I’m not sold on ART. As much as I want to trust it I can’t fully.

Dr. Yu does have a book.

Have been reading about Dr. Yu and have a call in to his office. Also have been talking to Hansa Center.

As mentioned, I now believe main symptoms I am dealing with involve reactivated chronic EBV. While most tests have been high, two previous tests were negative for EBV DNA. But I just found out the one done a week or so ago shows a positive, but very low. But that means it is replicating, which is not good.

For that reason, I am trying to get somewhere as soon as possible to work on immune system. I read, primarily, about Dr. Yu and dental/parasites, as mentioned by magoo2. I'm hoping he works on overall immune system as well. That is main focus, I believe of Hansa Center, but now sure which would be better and how far out Dr. Yu is booking. Just have to get something in works soon because of change in EBV DNA test.

Hey saraeli - Good idea and I had thought about doing so. I have been using rife, herbs, everything I can and EBV just keeps getting worse. Plus with the mix herbs, I don't know what will affect kidneys.

At this point, I have not felt worse, and it seems to get worse each day. Don't want to spend the money, but after 18 years of this, it just may be time to take a leap of faith and go. Money does nothing for me in life anymore except pay some bills. There is no enjoyment. That can't continue. I figure next year I will be able to get Medicare , which will save me about $500.00 a month in health care. That's including adding a Medicare supplement with it.

Have just hit that point where I've done everything I can. The EBV started replicating in DNA despite using Monolaurin, L Lysine, reshi and cordyceps for the last 6 weeks or more. But your idea makes sense, but right now I am struggling to get through each day. That's not complaining but the way it is.