Three months post treatment in Germany

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Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 4/21/2018 9:52 PM (GMT -6)   
Hi everyone.

I thought I should touch base with everyone and give a three month post Germany update. As many of you know, my 11 year old daughter and I went to St George Klinik for whole body hyperthermia treatment. It literally saved my daughters life. She is totally back to her old self, playing travel basketball and soccer again, running around all the time, smiling and laughing again non stop, able to think and read and do all her homework. She is totally normal. Literally a miracle treatment for her! She was also very Lyme heavy in her presentation: classic joint pain, brain fog, inability to think, extreme fatigue, etc. The doctors told us over and over again that the treatment only takes care of Lyme— not coinfections.

I, on the other hand, am not as awesome as I’d like to be. I’ve had some positive changes for sure: I haven’t had a fever once since returning from Germany, I don’t walk around feeling like I have the flu 24/7, I don’t have light sensitivity, perpetual nausea, no appetite, etc. However, I’ve had some new symptoms I’ve never had emerge: a ton of weird/freaky neuropathy, feels like there is fur or crystals growing on the inside of my legs that starts from my feet and moves up, feeling like I need to be moving my feet and legs all the time, pain in my hands, weakness in my hands, sometimes when I walk outside in the cold it literally feels like someone is splashing cold water on my legs, hands fall asleep. So just a lot of weird neuro stuff.

My hunch is that Bartonella has stepped in as the predominant issue. I’m trying my best not to go back on antibiotics for now. Taking tons of herbs. I’ll be starting intensive IV ozone 4 days a week for a good month or two. If that doesn’t help, then I’ll likely go back on antibiotics. Dr H is considering dapsone, rifampin, mini cycling for me first. If that doesn’t help, he mentioned, rifampin, minocycline, Pyrazinamide.

Rifampin was great for my Bart in the past but has permanently messed with my white b,old cell count. It’s been really low ever since going on rifampin. Ozone might help with that.

Anyways, St George is an AMAZING treatment if Lyme is your one and only issue. Life changing and I am ssssoooooooo grateful we went! My daughter is totally and completely living again and that makes everything so much better! I could not recommend the hospital enough. They were incredible there. But if you are dealing with other coinfections that appear to be more of an issue than Lyme, have realistic expectations that you will likely need to address the coinfections upon return from the hospital.

I hope everyone is hanging in and doing ok! Please let me know how you all have been: Girlie, Rikky, Traveler and the rest.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1511
   Posted 4/22/2018 5:59 AM (GMT -6)   
hey.

thanks for the update.

i also have low wbc on rifampin (8 months in treatment). how long since you have stopped it? my dr assured the wbc will return back in time but when you say they do not, im getting a bit worried.

when u say wbc low what does that mean? u are far lower than minimum interval value in your test?

i also have the leg pain u describe and need for moving them. that's classic bart. i am certain it's bart because i have positive b. quintana IFA test. also having a lot of shin bone pain recently.

thanks

multifacetedme
Veteran Member


Date Joined Jan 2016
Total Posts : 1586
   Posted 4/22/2018 9:40 AM (GMT -6)   
Welcoming the happy news.
In December of 2015. I thought I was dying. I began to research symptoms and began considering lyme in January of 2016 and the Horowitz Questionnaire convinced me to take immediate right action: changed diet, used Buhner recommended herbs, followed advice here. Today I feel GREAT and although I have some remaining symptoms, my health is basically back.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32521
   Posted 4/22/2018 10:44 AM (GMT -6)   
mpost said...
hey.

thanks for the update.

i also have low wbc on rifampin (8 months in treatment). how long since you have stopped it? my dr assured the wbc will return back in time but when you say they do not, im getting a bit worried.

when u say wbc low what does that mean? u are far lower than minimum interval value in your test?

i also have the leg pain u describe and need for moving them. that's classic bart. i am certain it's bart because i have positive b. quintana IFA test. also having a lot of shin bone pain recently.

thanks


mpost - my WBC have always been lower than range while on abx. When I take a break they come right back up. I had a 2 1/2 month break because of higher liver enzymes....and the WBC went right back up after one month.

How low we talking? Mine dipped to the mid to high 2's for awhile. But usually they're in the mid 3's.

My regular Dr. (non lyme literate) wasn't even worried. she told me she wouldn't be concerned unless they dropped to under 2.

Mine are now mid 3's while treating Babesia.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32521
   Posted 4/22/2018 10:48 AM (GMT -6)   
Evanston - such great news about your daughter!

Sorry that you didn't get the same results. I don't think people know that hyperthermia doesn't touch the co-infections.
That's too bad.


I hope you can also join your daughter in remission soon!!!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1511
   Posted 4/22/2018 11:07 AM (GMT -6)   
Girlie said...

How low we talking? Mine dipped to the mid to high 2's for awhile. But usually they're in the mid 3's.


my WBC is 3.56 with interval range 4-10
Neutrophils are 1.45 with interval range 2-8

so both are below minimum. my LLMD does not seemed worried at all and he told me not to stop any abx.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32521
   Posted 4/22/2018 11:15 AM (GMT -6)   
mpost said...
Girlie said...

How low we talking? Mine dipped to the mid to high 2's for awhile. But usually they're in the mid 3's.


my WBC is 3.56 with interval range 4-10
Neutrophils are 1.45 with interval range 2-8

so both are below minimum. my LLMD does not seemed worried at all and he told me not to stop any abx.


So, if your neutrophils were in range you'd be fine. (it would boost the total WBC)
It my lymphocytes that are under range making my total WBC low.


I've never stopped abx for that reason either.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 4/23/2018 7:56 AM (GMT -6)   
Thanks for the update - that's so wonderful for your daughter and for you to see her healthy again. I hope you continue to find things that bring you improvement. Your story reminds me of DS's - 2 steps forward, 1 back. Eventually you'll find yourself at 2 forward, 1 back and then hopefully no backwards step. yeah
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet smile

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32521
   Posted 4/23/2018 12:22 PM (GMT -6)   
yancync - not sure if you will see this - I'm just wondering how your DS is doing now.

I hope he's doing well...and in or close to remission.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Sal
Regular Member


Date Joined Feb 2017
Total Posts : 35
   Posted 4/23/2018 9:12 PM (GMT -6)   
Thanks for your update. I've been wondering how you've been doing. I'm glad to hear your daughter has made significant improvements.

I am in the process of discerning whether I should go to the clinic. I've sent over all my records and they've got me scheduled for a July start date, but I will be the first to admit I am not 100% sure about going and I haven't actually committed yet.

I feel like I've spent the last 6 months in a downward spiral and I'm growing more scared and frustrated by the day. I'm not sure if your results are the encouraging news I needed to hear or not. I have (and I know we all have) learned that there are no silver bullets or one thing that works for everyone but I had hoped you would be in a better spot.

Do you feel the protocols they've put you on are addressing the new issues? Or do you feel like you've had to start over learning what's wrong and how to treat it?

Lyme_CJ
Regular Member


Date Joined Apr 2015
Total Posts : 74
   Posted 4/23/2018 9:18 PM (GMT -6)   
Wow, that's wonderful for both of you! Thank you for sharing the story - I saw your post when you were going there and am glad to get an update. Especially useful to know about Lyme vs. coinfections. Hope you also make as much of a recovery as your daughter!

I am going to try some UV blood therapy and neural treatment next week. I think it is not as intense as your hyperthermia, but it looks promising to me. (Not to mention accessible for my present situation.) Even 20-30% improvement would be a big help - as you know!

Hang in there!

CTLyme
New Member


Date Joined May 2011
Total Posts : 4
   Posted 4/24/2018 1:33 PM (GMT -6)   
What treatments, meds, supplements etc in addition to hyperthermia was your daughter on that helped bring her to remission. Was this her first time treating? How long was she sick prior to treatment? I am 23 years into this on and off IV so very curious how they treat.
Thanks!

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 147
   Posted 4/27/2018 2:33 PM (GMT -6)   
CTLyme said...
What treatments, meds, supplements etc in addition to hyperthermia was your daughter on that helped bring her to remission. Was this her first time treating? How long was she sick prior to treatment? I am 23 years into this on and off IV so very curious how they treat.
Thanks!

bump

Gismo94
New Member


Date Joined Oct 2016
Total Posts : 19
   Posted 5/17/2018 7:19 AM (GMT -6)   
Evanston1 Delighted to hear that your daughter is doing so well!! Its brilliant to hear. As you said that is the thing about St George, it can make a remarkable improvement if Lyme is the only issue. I really hope that the IV ozone works for you personally with getting rid of your co-infections and you also begin to recover fully.
Take care
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