posted
Hello all my fellow Lymies, I for the last four and a half years of my treatment I have searched your discussions for your experience with a multitude of docs, drugs, herbs, detox etc. and everybody's insight have been invaluable in this journey. So, I have finally decided to join. After relapsing about 9 months ago, my doctor has not been able to pull me out of this crazy lyme place that I am in. I woke up in the middle of the night deciding I cannot doe this abx routine anymore - my immune system has had it! So.... what else can I do? If I do go off abxs I get really sick, If I stay on abxs I stay sick. So I would love some feed back and information on other options particularly a rife machine. Whose using them, are they helping to kill the pathogen, what kind is the best and where to get one used or new. Also on a more expensive note Dr. W . Who has taken the leap with Bio - photon therapy? Did it help - he does claim 97% success rate. Does this include overseas patients? How much does the whole shabang cost? How long of a wait to get into see him? Any other doc's in the US using this method?
okay, that's probably enough questions. I have these crazy feelings, of course fear, that I'm still at this place after 2 docs, millions of herbs and antibiotics, but I also feel hope that there are other possibilities. Your replies and responses will be much appreciated.
Thank You, Burning Girl
Posts: 9 | From Wisconsin | Registered: Nov 2012
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sorry, a lot of people get to this point, and go alternative. I have not been convinced of any of these treatments and there are so darn many of them, but others are. So, I am sure you will get some feedback.
Doubting that any lyme treatment will produce 97% success in chronic cases, and would be questioning anyone who claims this. A moderator here will probably come along and tell you about her experience with this, though.
One person who has tried about everything and writes about it is here:
posted
I've been down this road before and the alternative meds didnt cut it for me. So im back on pulsed abx. Also have CPN which needs ABX badly...
Posts: 141 | From cali | Registered: Nov 2012
| IP: Logged |
posted
Sorry to hear that your treatment isn't working for you. I am new to this and am in my 6 th week or so of abx.
But I, like you have been reading and trying to learn as much as possible. There is a guy, I think he is listed in YouTube under "nurse guy ", sorry, my brain still needs a lot of work in the memory dept. but he demo's a rife machine which is already programmed.
From what I have come to understand from reading the many posts about rife, it seems that the rife machines that "make contact" are preferable- but more expensive.
A man posted on a thread about how it helped his wife and he suggested to another person to buy one with a connection. I didn't know what that even meant at the time, but the one he was talking about actually touches parts of your body.
If you google rife, I'll try to find it quickly for you...ok, if you go to YouTube it is by rife nurse. "Rife machine I'm using to kill my tertiary neuro Lyme". I tried to copy the link, but it didn't work.
Maybe some others who have used a rife machine can tell you more specifically about that one BCX Ultra. I personally would like one that has the frequencies already programmed because it is too hard for me to think and concentrate.
So if one is programmed, and has positive reviews I am putting that on my priority list. But watching YouTube videos about rife machines helped me understand how they work.
I never heard of it before I knew I had Bb and who knows what else. It seems that for many it takes a combination of treatments. There is also a blog about a woman who was in Germany the same time "The Better Health Guy" was.
I have been reading her blog on and off and it was the first time I heard about that treatment in Germany. Here is her blog: http://sixgoofykids.blogspot.com/
I am pretty sure she posts on this forum. But hopefully you can look into these options and see what you feel is your next step.
On a side note, I never knew I had Hypercoagulation until I went to my LLMD. I never heard of it and didn't know what it was. Now I know it is very thick blood (not good), abx, oxygen, nutrients, etc. can't get to where they need to because of the blood being so thick and the Bb hiding behind the fibrin.
And then I was reading about POTS on the Mayo Clinic in regards to teenagers, and also people who develop it after chronic infections. This was another "new" condition I learned about.
I will be looking into rife as well and treating everything, parasites, de-toxing, herbs, supplements, continue my allergy drops, and anything else I learn. - probiotics, VSL#3 and Florastor, whew!
Keep us posted on what you end up doing and how it is working for you. You will get well! . Please remind me of that when I am down.. . Which was just a few hours ago. Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
ABX did little to help me either after 3 years . I strongly suggest parasite treatment - it is common to have filaria or lungworm with this disease . I really think the neglect of parasite treatment may contribute to lack of progress. I think ivermectin/ praziquantel is helping me more than anything else so far .
I have EMEM machine and think it definitely helps, but am impressed with the parasite meds (Equimax or zimectrin Gold vet version taken according to weight every other day . ) I felt worse at first from horrible die off , which surprised me , but after 8 months I am seeing improvement that is encouraging . I hope it lasts !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with annxyzz about treating parasites.Parasites/worms can play a MAJOR role in Lyme disease and is often an overlooked co-infection even by the best LLMDs.
Switching to antiparasitic herbs and salt/c saved my life and put me on the road to recovery. Google parasite symptoms and do a search on here under parasites.
Check out www.lymephotos.com This is what came out of me after using LOTS of antiparasitic herbs and salt/c.
A lot of these ticks are carrying the Filarial Worm co-infection, and if not treated will keep you chronically ill.
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
| IP: Logged |
posted
Thanks for all the feedback. I have been very trusting of my present lyme doc (lyme doc #2). Probably too trusting. When I came to him, he seemed to very easily pick me up and I began to feel well again. But after this last relapse, it has been 9 months of crappola. I'm starting to question what he is doing. I at first thought he was a super genius because along with seeing him I also see his naturopath who hooks me up to a biofeedback machine. I was most fascinated with this machine because it would read what was going on in my body. I would leave his office with these results that would read 1. What stressors are on my system. 2. How deep those stressors are. 3. What antibiotics/herbs/supplement would my body most effectively deal with these issues. The doc really works off of this reading. In the past it has been bartonella, erlichiosis, lyme, candida and maybe some strange fungus every now and then. Ever since the relapse it has only been lyme and candida for the last several times.. I'd like to think that means some type of progress, but when you feel like crap.....? I've asked the Dr. about parasites and heavy metals etc. But he says it has not ever shown up on my reading, so he believes it is not an issue. I have some serious questions to ask at my appointment next week. I'm kind of curious what his thoughts are on a rife. I almost don't care, I need to try something to get me off abxs for a little while. My blood count is way to low to beat anything. I'm also curious about the salt/C protocol which seems to keep popping up.
It's time. Burning Girl
-------------------- Burning Girl Posts: 9 | From Wisconsin | Registered: Nov 2012
| IP: Logged |
posted
Nutrition plays a major role in healing. Our bodies are weak and that is why most of us succumbed to this horrible disease. An overload of parasites, toxins, fungus mixed with very poor nutrition and wham you are sick.
Your specific nutrition needs need to be met and only a practiced nutritionist can determine them. Most people here do abx, I did that for a year and a half and quit. I did an alternative laser therapy with amazing results.
Not everyone has the same results. I suspect there are detox issues not addressed. I keep my symptoms at bay with vitamins only right now and have been like this for over a year.
There are other therapies you have to find what works best for you.
I did SaltC and was told later that high amounts of Vit C are bad for women.
Posts: 262 | From ohio | Registered: Jul 2008
| IP: Logged |
posted
I try to follow a healthy lymie diet, but of course falter at times. I like your thinking about SPECIFIC nutrition needs, as well as detox. I have had a sauna for the last three years and use that regularly. I am curious what the name of the laser therapy is called.
-------------------- Burning Girl Posts: 9 | From Wisconsin | Registered: Nov 2012
| IP: Logged |
posted
Erchonia Cold Laser. Search "Ocean" on here - She goes into more detail about it.
Posts: 262 | From ohio | Registered: Jul 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Breaking This Up For Easier Reading
quote:Originally posted by Burning Girl: Thanks for all the feedback. I have been very trusting of my present lyme doc (lyme doc #2). Probably too trusting.
When I came to him, he seemed to very easily pick me up and I began to feel well again. But after this last relapse, it has been 9 months of crappola. I'm starting to question what he is doing.
I at first thought he was a super genius because along with seeing him I also see his naturopath who hooks me up to a biofeedback machine. I was most fascinated with this machine because it would read what was going on in my body.
I would leave his office with these results that would read 1. What stressors are on my system. 2. How deep those stressors are. 3. What antibiotics/herbs/supplement would my body most effectively deal with these issues.
The doc really works off of this reading. In the past it has been bartonella, erlichiosis, lyme, candida and maybe some strange fungus every now and then.
Ever since the relapse it has only been lyme and candida for the last several times.. I'd like to think that means some type of progress, but when you feel like crap.....?
I've asked the Dr. about parasites and heavy metals etc. But he says it has not ever shown up on my reading, so he believes it is not an issue. I have some serious questions to ask at my appointment next week.
I'm kind of curious what his thoughts are on a rife. I almost don't care, I need to try something to get me off abxs for a little while. My blood count is way to low to beat anything. I'm also curious about the salt/C protocol which seems to keep popping up.
It's time. Burning Girl
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
c3mom,
I am curious as to who told you high doses of Vitamin C is bad for women? I totally disagree with this info. Vitamin C is excellent for boosting the immune system and many people have great success doing it intravenously.
Look up Linus Pauling, the Nobel prize winner and his extensive research on vitamin C.
Burning Girl,
visit lymestrategies the group that does salt/c for more info.
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
| IP: Logged |
posted
I have posted before about what I found out about a withdrawal period when you stop antibiotics.
I was on meds for 6 years and every time I tried to get off, I would get terribly ill. My LLMD said I was one of those people who would need the antibiotics for the rest of my life. He interpreted my increased symptoms in the days following an attempt to get off antibiotics, as a relapse of Lyme.
I went to a functional medicine doctor who told me that there is a withdrawal period when getting off antibiotics, partly because they are anti-inflammatory, and of course they also take over a little from the immune system, which has to adjust.
I got through the 2 or 3 weeks of withdrawal and felt a lot better off the meds. I wasn't healthy, but I decided to accept the level of ill health and work from there in a positive way.
I am still suffering from residual effects of the meds.
One new thing that helped me quite a bit was getting off dairy and gluten.
Everyone is different, but I suggest that your first step would be to get off the antibiotics, which will be easier if you can interpret the withdrawal in a different way.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
posted
I have not thought about the concept of the withdrawal - I too get terribly ill off them. I have been off dairy and gluten since the very beginning.
-------------------- Burning Girl Posts: 9 | From Wisconsin | Registered: Nov 2012
| IP: Logged |
posted
Burning Girl, it's worth a try to see if the increased symptoms that happen when you stop antibiotics, start getting better after a couple of weeks.
I was stuck between a rock and a hard place for 6 years, especially the last few years: couldn't stand to stay on, but I couldn't get off either.
If necessary, find a doc or naturopath who will help you get through it. Good luck!
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Pug7, how long after getting off the abx did you start to feel bad?
Random question, I have stopped drinking milk cause i do believe it makes me feel bad, does this mean I can't have yogurt?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If milk problems are caused by lactose intolerance, which many people have, then yogurt is OK. In fact, if you take probiotics with milk, you can still drink it more than likely.
But if the problems are caused by casein allergy then no milk product can be taken presumably.
I would question the statement in the link that such allergies cannot be developed later in life, because lyme fools with the immune system.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Gigimac, it has been awhile but I seem to remember that I started to feel worse pretty quickly. In fact, I remember going a couple of days without meds and getting lost going to my Lyme doctor's office, where I had been many times. I had pain, my muscles twitched, parasthesias came back, and my mind got very very foggy.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
posted
Pug 7, How long have you been off abx, and what are you doing to deal with those spirochetes? Are you killing anything at all or just managing symptoms?
-------------------- Burning Girl Posts: 9 | From Wisconsin | Registered: Nov 2012
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I've tried herbal, alternative, and ABX therapy. I've been to 3 LLMD's.
ABx gave me the most progress. My current LLMD is the most aggressive, runs the most tests, and seems to be on top of the most current treatment protocols.
I was first diagnosed 5 years ago, and started limited abx. Now I am treating aggressively because I had a few relapses along the way.
It's all in the diagnosis and proper treatment for your specific case.
Keep looking for a good LLMD.
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic