FAQ

I have been getting a lot of messages with questions about our experience at the klinik, so I have merged them into one place here with all of the answers!  It is also on the Stuck in the Lymelight Facebook page under notes.  I will do another document as I get more questions too.

How much total did it cost you?

$38,000 -19,000 per treatment person

$ 180— $85 per day for husband to stay and all of his meals at the klinik

$1500 for supplements bought at the klinik for post treatment protocol

$800 for supplements bought at home for post treatment protocol

$210 for airport transport to and from klinik

$240 for liposomal Vit. C and Glutathione (we were unable to do the IVs, veins didn’t hold up)

$500 in food because the food at the klinik wasn’t the best (this isn’t necessary just our choice)

$41,430 not including airfare for two of us to be treated and my husband to come along for support.

What were the out of pocket costs for? How much?

Everything was out of pocket for us

What did the pre-trip supplements & infusions cost?

There are no pre trip supplements recommended, the klinik told me it was important to just get the lyme out as soon as possible to stop the spread of damage. After treatment, there is two months of IV’s. Twice a week Vitamin C and once a week Glutathione. We weren’t able to do these because of crappy worn out veins so we just took liposomal forms and did just fine.   They were $60/month. There is also a very extensive and customized list of oral supplements to take for the six months following treatment to rebuild the immune system. There are a few you can only get in Germany and some that are better quality there so we bought those at the klinik (if doing so pack an empty bag to bring them all home in!) and then bought the more basic ones back at home. Total about $1150 per person for it all.

How do they handle your pain management when you’re there?

They are fantastic about pain management. You just have to tell them you are in pain and they give you IV pain meds right away.

What does the hyperthermia feel like?

You are sedated for the hyperthermia, so you don’t feel anything. It lasts about seven hours and when you wake up, you honestly feel like you have been hit by a large truck. Everything aches and you are exhausted beyond even a lymie’s comprehension. We basically both just slept it off. The day after hyperthermia is rough but then for us it really improved.

How many rooms were you in? It was you, your daughter & your hubby, yeah?

Because there was the three of us, we got a “suite”. Rooms 130 was a single that Chloe got. Its door opened up into our double room which had a couch area and two hospital beds. Chloe’s bedroom had an awesome bathtub that we both used to soak when sore the day after hyperthermia.

Was there any cost savings for going with your daughter?

I don’t believe so.

What would you have packed/not packed if you were to do it again?

I definitely would pack the empty suitcase again to take all of the supplements back with us. Plus there is some awesome German meat that we brought back.

What would be your tips for someone considering going?

Honestly the most important tip I can stress is to just GO. Just as fast as you can to kill that borrelia. It has been the best thing I have ever done. We have our lives back now.   I went from literally being unable to think, work or parent to being able to being my old pre-lyme self again. I have absolutely nothing to gain by others going other than helping them hopefully have the same success I did.

Did you bring supplements with you? If so, did you have issues clearing customs?

On the way there, I only brought my thyroid medicines and some melatonin for the plane ride. On the way back we had a huge suitcase full of meds from the klinik but they give you a slip signed by the doctor to present if there is an issue. We didn’t even get questioned.

Tell me about “uncomfortable” procedures, what were they like?

You get an ozone colonic twice. That isn’t the most fun. And the morning of each hyperthermia you get an enema. Honestly, the colonic was the most uncomfortable by far. I had some issues with my weak veins blowing out with the IV’s, but other than that, I didn’t remember the hyperthermia, and the other treatments are no biggie at all. Magnetic field bed, oxygen masks, ionic foot baths and ozone and laser therapy.

What happens if something goes wrong?

Dr. Douwes the head doctor stated in an interview that they have done over 18,000 hyperthermia treatments with no serious adverse effects. Now I did get a small burn and so did Chloe. I also had some nerve damage in my left elbow which caused my left hand to be numb for quite a few months.

How was the food?

We were not fans of the lunches or dinners at the klinik.  However, the breakfasts were good and we enjoyed the food at the surrounding restaurants.

How likely are they to stick to the 2 week schedule?

Oh they are German. They stick to schedules!! It is ran very, very smoothly. Like clockwork.

Nobody I know of has had to stay longer.

Did you have a line? Your daughter? Did they give you a hard time about using it?

We did not have lines but I know of others who have. They actually recommend getting one prior to coming if you think you will have vein issues.

What did a typical day look like?

When you check in at the klinik, you are given a little green booklet that has your entire treatment schedules for each day there. Each morning before breakfast, you head down to the nurse’s station to get your daily IV’s started. Take the IV pole down with you to breakfast and eat with it going. Depending on which day it is, you may have some downtime in the room while your IVs finish, or you may bring them with you to your other therapy appointments. The klinik encourages you to take walks in the park next door or in cute little village if you are able. They say they don’t want you dwelling on the grueling illness, so it is good to take time to enjoy yourself a bit if you can. On the weekends there are no treatments, just IVs then you are free to explore.

What did you wear while you were there?

Yoga pants were my friend!!! Pack comfortable layered clothes!

Did you do laundry while you were there?

Yes. There is a laundry across the street from the klinik that cost us 30 euros for our clothing. It seems expensive but it is still probably cheaper to do that then pack additional bags. We packed enough for one week and washed halfway through.

Assuming you couldn’t eat any yummy German food or drink German beer???

You can eat the yummy food but not drink the beer!!! You are on metronidazole when there and that does NOT go well with alcohol!!

What do you do if you are on your period there?

I honestly have no idea. They do put a catheter in after you are sedated for the hyperthermia so that wouldn’t be a lot of fun. The catheters aren’t a big deal though, they put them in after you are out and take it out the next morning when you are still too out of it to be bugged that you have one.

Are breast implants ok?

Yep! I know of a few ladies who have gone with them and one of the nurses there was convinced I have them!

6 thoughts on “FAQ

  1. Thanks for the detailed info. I have a couple more questions. Did I understand that a PICC line is an option but you just chose not to.? I have started assembling lab info to submit. Were they picky about lab results coming from specific labs like Fry or IGeneX. Also, I have labs from November 2014. Would they accept those or do they want very recent? Do they do the lyme’s test for your husband or did you have it done before you went? We, luckily, have a good friend that lives about 1 hour away. My husband could stay with him, if he does not do the treatment. In your opinion, would that be a mistake? Would I need him there 24/7?

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    1. Those labs should be recent enough! My labs were from Igenix but I’m not sure what other labs they prefer. We didn’t test my husband or have him treated at all. I think you would most likely want your husband there 24/7 at least for the day after hyperthermia.

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    1. I’m not sure on that one!! I know that I had a type of molluscum rash on my legs before hyperthermia that wouldn’t go away for ever due to my weakened immune system and it cleared that up too! 🙂

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  2. Thank you so much for this detailed post. We are at the beginning stages of going and this has helped a lot. Glad to hear you are well and I hope your daughter is as well. Mine also has Lyme so this was helpful as we would go together.

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