posted
Yes, I just got back from spending two weeks at the Hansa Center. Unfortunately, I felt and continue to feel no symptom relief of any kind. Apparently, however, a lot of physiological changes took place in my body, more so than the doctors expected to see in such a short period of time. So that's a good thing. I just hope that it manifests itself in some kind of symptom relief soon. I'm supposed to continue a personalized protocol for the next two months consisting of various herbs and homeopathic remedies.
Despite my current lack of response, I would not dissuade anyone from going there. As we well know, we all respond so differently to treatment. I met other Lyme patients who clearly benefited from the treatment. And perhaps it'll still happen for me in time...
Hansa Center sees the worst of the worst so they know what they're dealing with. They've got a great staff and a very unique approach to healing the body. It's just that it doesn't work for everyone and they're the first to admit it. So, it's an expensive gamble, but it might benefit some of you.
What's so distressing is that nothing, but nothing has ever worked for me. I don't even herx. I just feel so unbelievably terrible ALL the time, 24/7:
+ Head-related problems: - Daily migrating headaches (not migraines) - Head pressure - Head stabbing sensations - Constant "woozy" feeling
+ Twitching/Fasciculations/Electrical Vibrations: Everywhere in the body, all the time.
+ A "poisoned" like/malaise feeling: Comes and goes throughout the day.
It's been almost 3 years now since being diagnosed and I still haven't had a smidgen of improvement, I've only been getting steadily worse. And I've tried so much:
- Antibiotics (both oral combos and IV Rocephin) - Rife Machine (on and off for several months) - IV Ozone (75 injections over 5 months) + other Ozone modalities like insufflation - Colloidal Silver - Teasel Flower Essence - Various Herbs (Healthy Directions, etc.) - Various Homeopathic Remedies - IV Vitamin C drips - Salt/C protocol (for 4 months)
And lots of other stuff which I can't even remember right now. If the protocol put together by the Hansa Center doesn't work out for me, I will seriously have to consider stem cell treatment and somehow deal with the immense debt it would incur.
I just can't go on like this much longer...
Posts: 57 | From Florida | Registered: Jan 2009
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posted
One of my sons has some of these issues and is progressing very slowly with Lyme treatment. He has a genetic detox problem which is complicating matters.
We have just started treatment with a cranial osteopath and he was talking about the work of a Dr Perrin, who has a hypothesis that the flow of fluid in the CSF is reversed in some chronic ilnesses which results in a lot of head symptoms due to toxin build up.We shall see how he progresses with treatment but the osteopath did say his head did not feel quite normal.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Lord, I'm so sorry to hear about your battle. I thought I had it tough right now..
Before illness did you respond according to plan /treatment with other regular bug's?? Infection, bronchitis that sort of thing.
I've yet to see stem cell treatment listed anywhere for this.
What have your labs shown?? Like to you have the whole works or certain Lyme/Co's?????
Hope this day has some relief for you. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had the same symptoms of twitching, vibrations/electrical vibrations/head pressure/migrains etc.
After 6 months of antiparasitic herbs and THEN salt/c the parasites seen on www.lymephotos.com appeared in the toilet. It could be that you have the Filarial Worm co-infection that hasn't been treated properly.
Maybe consider the antiparasitic meds Dr. K. puts his pts on. I think parasites could be a very strong possibility in your case.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
could it be stenosis of the jugulars like the CCSVI - chronic cereberalspinal venous insufficiency cause the weird head stuff?
posted
ticksickfamily - The Perrin Technique looks interesting but there don't seem to be any practitioners in the U.S., or?
FYRECRACKER - they don't treat according to what microbe you have (although they can detect it). They don't treat specific diseases. Instead, they treat any malfunctioning/deficiency in the body in order to enable it to combat any microbe on its own. But to answer your question, yes, I was diagnosed with Babesia through their Bio Resonance Scanning technique but never tested positive on the Igenex test. Apparently, their BRS technique also revealed Bartonella which also tested negative with Igenex. The only other positives with Igenex were Ehrlichiosis and Mycoplasma Pneumonia.
I've had minor symptom for 5 years (e.g., neck creaking/cracking, minor fasiculations). Then all hell broke loose 3 years ago with some of the head symptoms I described. And then it took another 6 months to get properly diagnosed (March 2009) and I've only gotten worse since then.
nonna05 - Yes, I remember responding to treating in the past for strep, mononucleosis, etc. I think I have the whole works although Igenex only shows positive for Lyme, Ehrlichiosis, and Mycoplasma Pneumonia.
glm1111 - I did do Humaworm for 2 months but it didn't do anything for me. Perhaps I need to stay on it longer? On the other hand, my main doc at the Hansa Center did not think parasites were a big issue for me at all (based on their BioResonance Scanning technique).
Posts: 57 | From Florida | Registered: Jan 2009
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posted
dmc - Yes, they brought that up (CCSVI). My doc advised me to look into that if the home protocol fails to provide relief after 2 months. But based on people who've had it done, it doesn't seem to make much of change, at least for Lyme patients. My general observation is that it seems more successful for those diagnosed with M.S. Still, it might be worth looking into soon...
Posts: 57 | From Florida | Registered: Jan 2009
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Have you treated for mold? It has the same symptoms as Lyme.
And have you been tested for the MTHFR defects?
When I started treating for my MTHFR defect and did some heavy metal detox, I felt a big shift for the better.
Posts: 1142 | From South | Registered: Dec 2010
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am sorry you are having a rough time. Every time I start a new protocol I have high hopes for it working and helping.
Keep us posted.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Hambone - Apparently IV Ozone is quite effective for mold and I've done tons of that. I don't really think it's a problem. How were you treating it exactly?
Yeah, I think I was tested for that genetic deficiency or perhaps it was the HLA test or are they the same thing? I can't remember. In any case, I seem to remember some deficiency but my LLMD didn't really know what to do with that info. How are you treating it?
Regarding heavy metal detox, I've done a few EDTA and DMSA chelation drips as well as using Detoxamin. No improvement whatsoever. Honestly, it's like everything I take is a placebo based on my lack of any response to everything.
Posts: 57 | From Florida | Registered: Jan 2009
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posted
Perrin technique practioners seem to be mostly in UK and Europe, although a couple have now trained in Australia too. There is a book which could be useful perhaps to patients and osteopaths.
You can see more from Dr Raymond Perrin here on YouTube. This is the link to first of 6 presentations :
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by earprints: Hambone - Apparently IV Ozone is quite effective for mold and I've done tons of that. I don't really think it's a problem. How were you treating it exactly?
Yeah, I think I was tested for that genetic deficiency or perhaps it was the HLA test or are they the same thing? I can't remember. In any case, I seem to remember some deficiency but my LLMD didn't really know what to do with that info. How are you treating it?
Regarding heavy metal detox, I've done a few EDTA and DMSA chelation drips as well as using Detoxamin. No improvement whatsoever. Honestly, it's like everything I take is a placebo based on my lack of any response to everything.
I actually JUST started using cholestyramine to help me detox biotoxins. Not sure if I have a mold issue or not, but if I do, hopefully that will help.
I started using methyl-folate, methyl b12 and P5P ( very tiny doses ) for my MTHFR defect. This has helped clear my head up some.
Posts: 1142 | From South | Registered: Dec 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Try if you feel better after ivermectin.
Posts: 1834 | From US | Registered: Oct 2008
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posted
earprints, sorry to hear that going to Hansa has not resulted in improvements for you yet. Thank you for sharing your experience. Having ms/lyme for 15 years I've considered going too.
I've read about the 2 week program and have Dr. J's latest book, just wondering if no improvement is evident after a week can you cancel the rest of your stay? Was anyone there flying in just for a few days?
Thanks, I hope some of the suggestions others have posted are able to help you.
diana
Posts: 857 | From northern california | Registered: Dec 2009
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posted
karenl - thanks for your suggestion. It's on my list of things to try.
dogmom2 - They charge you per day, so you can leave any time you want. I chose to do the recommended two weeks which is the length of time most out-of-towners stay for. Some of the locals tend to come for a day or two though.
I should note that there was a girl there with Lyme who didn't feel a change until her very last day (of her two week stay). So, you also don't want to give up too soon.
Posts: 57 | From Florida | Registered: Jan 2009
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quote:Originally posted by earprints: But to answer your question, yes, I was diagnosed with Babesia through their Bio Resonance Scanning technique but never tested positive on the Igenex test. Apparently, their BRS technique also revealed Bartonella which also tested negative with Igenex. The only other positives with Igenex were Ehrlichiosis and Mycoplasma Pneumonia.
- So what was your treatment for babesia, bartonella, mycoplasma, and ehrlichiosis??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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For Babesia, I think I did about 6 weeks of Mepron with no response whatsoever. No better, no worse.
For Bartonella, I did Zithromax and Flagyl with no response whatsoever. No better, no worse.
For Mycoplama and Ehrlichiosis, I did months and months of Doxycycline with no response whatsoever. No better, no worse.
I've never responded to ANY oral abx of any kind (there were others like Bactrim, Biaxin, etc.)
I did, however, get much worse during the 12 weeks I was on IV Rocephin. The worst of my head symptoms started during that time and haven't ceased since then.
Honestly, after 13 months of continuous abx without anything to show for it whatsoever, I just gave up on it. My LLMD thought so too. It's made me question my Lyme diagnosis and yet I still light up like a Christmas tree on the Western Blot test and many of symptoms are Lyme-like. So I just don't know what to do any more.
For the past 1 1/2 years, I've been trying everything else under the sun...
Posts: 57 | From Florida | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm, strange. have you been tested for other illnesses? can't think of any but just asking if they have a done a complete medical checkup.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Sammi
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Member # 110
posted
I agree that many of your symptoms sound like Babesiosis. Six weeks of treatment is never long enough for Babs.
Have you thought about seeing another Lyme doctor, one who comes highly recommended?
Posts: 4681 | Registered: Oct 2000
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posted
randibear - yes, I've been tested for a variety of things. Among other things, I know I have EBV and probably Candida.
Sammi - I know that 6 weeks of Mepron isn't enough to treat Babs. I was just looking for some kind of response, even a side-effect...but nothing.
Posts: 57 | From Florida | Registered: Jan 2009
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posted
pab - No, I've never been tested for pseudo-tumor cerebri. After just reading about it, the most typical symptoms associated with it don't really sound like mine. Also, both eye exams and MRIs revealed nothing abnormal in the past. Nevertheless, I'll bring it up to my LLMD.
Sammi - I was taking 2 tsp. 2x per day of Mepron.
Posts: 57 | From Florida | Registered: Jan 2009
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Definitely sounds like you have been undertreated for babesia, bartonella and even ehrlichia. Especially since you have multiple infections most of those will require very high doses of multiple meds. Just taking mepron or doxycycline by themselves will do very little.
Based on hubby's experiences the more infections you have then I think the higher the doses you need to see results.
It took him many months to build up to therapeutic doses of meds, but now if he misses a couple of days he needs to get back on the high dose meds -- pulsing did not work for him.
For ehrlichia you could combine doxy with rifampin and/or one of the fluroquinolones. There are lots of different choices for babesia if mepron does not work. Try quinine and clindamycin or malarone plus artemisinin with lariam or diflucan. For the bartonella a fluroquinolone (cipro or levaquin or factive) with rifampin is good.
You can also add herbs along with the antibiotics. It will probably take both to make a real difference.
It sounds like your doc is not into doing med combos and that is what it takes for long standing multiple infections.
Personally I do not think the Hansa treatment will do much for you going forward as what they generally work on is toxicity issues and your problem seems to be more infectious in nature to me.
And yes, hubby started with Dr J back before we knew anything about lyme and co and before he had any antibiotic treatment. So he has had experience dealing with most of what you have tried including IV colloidal silver and blood ozone treatments etc etc.
Very strong antibiotic combos have done more for him than any other treatments.
He is not well, but has recently had positive tests for Rocky Mountain spotted fever and ehrlichia/anaplasma which were not detected or treated during his first 10 years of illness.
I think you can get better, but it will take a doc who is willing to really go after these infections in a systemic approach. IV meds may or may not be the answer. You didn't mention flagyl or tindamax or treatment with things like lumbrokinase or systemeic enzymes such as wobenzyme -- those are very important pieces of the puzzle.
Hubby's seizure like episodes and parkinsonian tremors and dystonia and movement disorder symptoms went away after 9 years. We attribute most of those symptoms to bartonella and/or babesia rather than lyme.
Good luck and do not give up.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I know someone who said it took them several months to see any improvement in their babesia symptoms while on Mepron.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Jamers
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Member # 28016
posted
I agree with undertreatment.
Bartonella affects the nervous system hence the twitching/vibrating issues.
The headaches can come from any of the infections though. You probably should have been taking Artemisinin with the Mepron for Babesia.
And Zith is not a typical treatment for Bartonella. It can hit it, but probably won't eradicate it. There are other meds for it. I am taking Rifampin.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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