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» LymeNet Flash » Questions and Discussion » Medical Questions » What has worked for me, advice and support to thosenew to lyme

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Author Topic: What has worked for me, advice and support to thosenew to lyme
Igor's mom
LymeNet Contributor
Member # 29191

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I was writing to someone about therapies and thought maybe this information could be useful for other new lyme patients.

Since early in 2010 I was on different antibiotics for many months-doxy,plaq, ceftin, mino, plaq. and 9 months of Mepron for babesia some with zith, some months without, But becauae I was not told to take Florastor and good probiotics, I got c. diff. My first lyme doctor, Dr. sucked, had I stayed with him I am certain I would have died or killed myself. It was that bad.

Just a reminder, please take probiotics and Florastor every time you take ABX.

I found a great travelers' disease doctor, who diagnosed 3 parasites and c diff. Labcorp and Quest never found anything in the stool samples. Know that these labs won't likely diagnose parasites or c dff. You cannot rely on them. You probably have parasites if you have lyme, you need to treat them for months. If you have terrible diarrea and gi pain you may also have c diff.

After 3 c diff bouts I could no longer do abx. I had to stop everything while I had a fecal transplant to restore my gut flora and stop the diarrea and inflammation of my gi tract. I found the transplant doctor on the c. diff forum, then I found instructions for home infusions there too. The expert is a doctor in Australia, I emailed them and they sent me instructions as well.

If you have c. diff. IMO this is the only way to get rid of it and regain your health. YOu can do it with a doctor or at home. Seek support from other c. diff patients. Freshness matter...If you want help contact me. I am not ashamed of what I did to get well.

I am now on immune boosting supps and chinese herbs and acpuncture. And in March I travel to Germany to see Dr. W then will try to treat with the Bionic (or the PE-1), still not sure which one I can afford. or would be best.

I think changing my diet to eliminate most abx in food, lower my sugar and caffeine, try to reduce wheat and milk and other allergy causing foods, also helped a lot. Of course, no alcohol, and that means in tincures too, you have to boil alcohol-based tinctures to get the alcohol out.

A good lyme practitioner is key. I have an LLMD and a lyme acupuncturist. I live in VA and travel 1.5 hours each way to Maryland for my LLMD and travel another 1.5 hours west to see my acupuncturist/chinese herbalist. My LLMD treats me with supps and herbal lyme treatments, sleep aids and thyroid meds. My CHM dr.gives me twice a month acupuncture to open my meridians and improve my digestive system. He is using ginseng, licorice, ginger and lots of astralagus.I also use alot of tumeric and ginger in teas and supps to reduce inflammation.

Stephen Buhner's group on Yahoo and his website is also very useful for herbal treatments that can be used with or instead of abx. In particular he is quite in favor of using sida acuta and cryptolepsis.

I also have eliminated mercury from my mouth and take loads of chlorella to bind and eliminate heavy metals. I have used off and on antiparasitics. I take chlorella before meals-20-30 minutes.

I had loss 35 lbs before finding my acupuncturist. I have now gained about 20 of it back and feel much better. I make my own kefir with grains, I eat saukraut, also I take VSL DS and other probiotics like Theralac and Florastor. I will buy Mutaflor while in Germany.

I take a lot of supps, everything from vitamins to CORE, to Sam-e, to fish oils. I read books on lyme by Dr. S and B, I educated myself and continue to about what doctors have used and other patients have used. I try supps and see how I feel. I still need to learn how to use a biotensor. I listen to my inner voice that tells me what I need for now it has worked for me. You need to learn to listent o something like that to figure out what you need next.

I think it takes a lot of different things to get well.

I also use a cheap far-infrared sauna I bought on ebay. It helps with low body temperature and sweating out toxins. Ii use a castor oil pack for my liver/gallbladder.

Ii have also used erlochonia laser to eliminate metal allergies, and other inflammatory responses. I have done emotional trauma work in connection with that therapy. I saw S at NIHA in DC for that work before my mercury removal.

I have a friend with PEMF machine (it costs 20k). She lets me use it every so often-it helps get rid of pain. It's like a TENS unti on steroids. It contributes positive ions. We also used a rife machine before it triggered another c. diff attack.

I get reiiki and massage whenever I can afford it froma reiiki master. And an osteopath who does adjustments to make my body more aligned for healing.

I meditate, pray and do yoga. My passsword at work for my computer was until recently Godpleasehelpme. I would pray every time I logged in-numerous times a day. I think prayer is amazing.

I try to listen to music and forget my illness. I always have a plan for something else to work on next. I need to work on heavy metals, candida, figure out if I have the MTHFR gene when I get back.

I took antidepressants and anti-anxiety meds until I no longer needed them. I wanted to die before, could not get out of bed, had terrible anxiety attacks, couldn't sleep or think. Now I am much better, I work full time, I take care of my family, I visit friends and family, I can travel to Germany on my own,, before I couldn't even walk outside. I still have pain, I still have brain fuzziness, I still cannot sleep, my liver/gallbladder burns frequently but less than it did.

I didn't think I would be well. It takes patience and faith and good lyme practitioners-whether MD, or alternative or both. Its different for each of us,depending on what resources are around us.

I still take thyroid medications and I still need Ambien and melatonin to sleep.

Now that I feel a little better I am starting to walk and do light weights. I hope to get a longer workout in place, after I get back from Germany.

I tap into the individual and collective wisdom of the c. diff patient group and the lyme patient groups, lyme net, Yahoo groups for Buhner protocols, the bionic use. These groups, like Lyme net here, has been a life saver for me. I am very grateful for the individuals many of whom I met on this web page that I credit with saving my life by empowering and educating me about this disease and about c. diff.

I read a lot about lyme, meditation, healing. I am grateful for all the help others have given me. I express that gratitude as often as I can. Expressing gratitude is healing.

Mind-body-spirit must be addressed. The infection is not one thing. It is not a race for the cure, it's a journey of a lifetime.

Be well on our own journey, help others when you can.

--------------------
Igenenex + IGM 18, 23-25, 31, 41, 66, FL 1953, bart, babs, erlich, c diff. Dox 10/10,11/10-5/11 Mino, Buluoke,plaq (2/10) zith (3/11-5/11), Paragone, Flagyl, Ivermectin, Paromomycin, Ceftin, Nystatin(4/11) mepron (4/11-)BW A-L , A-Bart, A-Bab.

Posts: 254 | From Virginia | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Very nice of you to share. You might want to put this in the "Success Stories" too.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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manybites
Frequent Contributor (1K+ posts)
Member # 33750

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If you have babesia watch out as it can exsplode in Germany from Ozone treatment.
Be aware to atack babesia right away or treat it well before you go and retreat again when you come back.

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Igor's mom
LymeNet Contributor
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I treated babesia for nine months with mepron and some abx. Thank you. Yes ozone would make that much worse.
I saw this presentation about lyme treatments on Better Health guy's age. It has a lot of good information:

http://betterhealthguy.com/joomla/images/stories/PDF/Biomedical%20tips%20and%20tricks-%20Amy%20Derksen%202012.pdf.

--------------------
Igenenex + IGM 18, 23-25, 31, 41, 66, FL 1953, bart, babs, erlich, c diff. Dox 10/10,11/10-5/11 Mino, Buluoke,plaq (2/10) zith (3/11-5/11), Paragone, Flagyl, Ivermectin, Paromomycin, Ceftin, Nystatin(4/11) mepron (4/11-)BW A-L , A-Bart, A-Bab.

Posts: 254 | From Virginia | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
chaps
LymeNet Contributor
Member # 25286

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Please explain about the ozone causing Babesia to explode. I was under the impression that ozone kills all anaerobic pathogens under which Lyme and coinfections fall. This is the first I've heard of ozone causing babesia to explode.

--------------------
-chaps
Listen to the bell, Borrelia. It tolls for thee!

Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
tricia386
Frequent Contributor (1K+ posts)
Member # 29623

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Yes, I agree Chaps. I would like this explained as well.

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

Posts: 1752 | From Albany, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
MattH
LymeNet Contributor
Member # 30846

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Igor's Mom,

Thanks for the post. Relating your experiences is extremly helpful. Did you find the PEMF device helped with circulation at all? I am using a low power PEMF mat for a couple of months (3 weeks so far) but really cannot tell if it is helping.

I may have Bart and meet with my LLMD next week to discuss, so that may be the issue with the leg circulation. The serrapentase helps with the pain but does not keep it from returning.

Thanks again for your post and All the Best, MattH

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kimmie
LymeNet Contributor
Member # 25547

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I am proud of you! You have kept fighting and never let the set backs stop you. C diff has really been tough for me too, and sometimes it has been hard to look forward when you are stuck in a bad situation.

See you soon! [Wink]

Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
   

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