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Old 09-10-2012, 01:50 PM   #1
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lymebgone HB User
where is my cure?

i was diagnosed with Chronic lyme disease 2 years ago. My tests were done by Igenex in Calif. and had 5 positive bands. I found one Dr. who treated me with iv rochephin because i couldn't tolerate any of the antibiotics. When that didn't help at all, my Dr. dismissed me , told me i didn't have lyme , he was the 2nd Dr to send my labs to igenex and told me straight to my face i'm sorry , but you have chronic lyme disease. Now after treating me for 8 weeks he changed his diagnosis, and told me to call the mayo clinic. He said every one responds to rochephin and that was the gold of antibiotics so if that didn't work , then i must not have lyme. Other than fevers I have almost every symptom that is listed for lyme. I'm getting worse and need a Dr. I''m on disability and flat broke. Can't afford monthly supplements, nor can i find a Llmd who takes insurance.I'm 54 and watching my life pass before me. is there any one out there that can help me find a Dr preferably on long island n.y. Is there any one that can here me because i am at the end of my ropes. I've been working with a Dr. who is not a lyme Dr. not even an internist, but a Nuero-psychco pharmacologist but is lyme friendly and has been constantly changing my antibiotics but i have alot of trouble tolerating them at high doses . It causes serious stomach pain and makes me dizzy and worsens the nausea but doesnt help the lyme. We try low dosages but get no results.I'm so done and need some one to help me at least get back some of my life. I want to go back to the gym . I worked out for 23 years and haven't seen a gym in 21/2 yrs. to painful.very off balance to just walk. don't have the strength. Have severe cognitive issues, memory , loss of words trouble completing thoughts and can write no more. Please some one help. Thanks for listening . Lymebgone

 
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Old 09-11-2012, 05:05 PM   #2
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Arrowroot HB User
Re: where is my cure?

Maybe it's time for you to try natural meds and lifestyle changes, since you've tried antibiotics and they didn't work for you. You could opt to supervise your own Lyme recovery instead of relying on an LLMD. You can get basic healthcare from a doc who is covered by your insurance.

I'm in a similar situation. Sick with Lyme and Bartonella, no money for an LLMD or long-distance transportation to get to one, only have Medicaid, no job or income, small savings dwindling.

I take natural meds and a few supplements, try to get plenty of rest, avoid alcohol, and avoid processed foods, opting for a whole foods diet. I am not cured, but doing much better than I was. I still tire easily and have to rest frequently, but I'm able to cook and clean, do laundry, grocery shop, and run errands. Many of my worst symptoms are gone or vastly improved now.

Post a reply here if you'd like suggestions for natural meds to try. I wish you the best.

 
Old 09-11-2012, 06:52 PM   #3
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Re: where is my cure?

I am open to anything that will help me get well as long as i can afford it. I prefer natural and have had some make suggestions but i have no idea how much of what to take. I've thought of investing in some of the books by Brian Rosner about 10 different lyme treatments by 10 different dr's including the use of a rife machine. My problem is i can't absorb what i read.Its the cognitive issues that get in the way of my reading to learn what i can do for my self that is quite frustrating. I'm using a rife machine, and have started taking baths with epsom salts and baking soda and a little coconut oil because its supposed to help kill the candida. Another gift from the antibiotics. i am open to anything you can suggest and look forward to hearing from you. Thanks so much for answering my call for help.

 
Old 09-11-2012, 09:19 PM   #4
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Arrowroot HB User
Re: where is my cure?

You’re welcome. Glad I could help.

I think the best natural med to start with would be liquid Samento. You take it as drops in a glass of water. It has really helped me, especially with joint and bone pain. It is expensive for a supplement, but cheap compared to the cost of a visit with an LLMD or some of the higher priced antibiotics. It’s about $30 for a bottle that will last you probably 1-2 months. There are instructions on the bottle for taking it.

I also take 1 probiotic pill per day to prevent candida and have had no problems with it. I've been taking Samento and the probiotic for about a year and a half.

If you have any mental illness-type symptoms or heart-related symptoms, like palpitations or angina, magnesium glycinate helps a lot with those kinds of things.

Other things that would probably help are:

Trying to eliminate as much stress in your life as possible.
Getting plenty of sleep each night and resting when you need to.
Avoiding alcohol.
Avoiding processed foods and eating a whole foods diet.
Some people also say regular exercise is helpful. I haven’t been able to do very well on that one myself, though, for a number of reasons.

Last edited by moderator2; 10-23-2012 at 06:02 AM. Reason: please do not post a commercial website for any reason

 
Old 09-12-2012, 03:57 AM   #5
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: where is my cure?

Healing is possible. Don't listen to, or put yourself in the hands of, those who do not really understand Lyme Disease or how to treat. Not everyone responds to a particular abx. in the same way.

Another alternative suggestion is Salt/C. It has an excellent track record. It gave me (a chronic late-stage lyme person) my life back! If interested, I highly recommend the book The Salt/C Protocol for Lyme Infection by M. Fett. This is an excellent resource for all lymies, not just those doing the S/C protocol.

All the best,

Jen

 
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Old 09-12-2012, 05:19 AM   #6
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Re: where is my cure?

Jen:
I think I have asked this questions before but don't think I ever got an answer. Is the salt/c protocol dangerous if a person thinks they have lyme but might not?

Arrowroot:
Does the samento taste bad?

Thanks, LaLa

 
Old 09-12-2012, 06:26 AM   #7
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Re: where is my cure?

Quote:
Originally Posted by lala52 View Post
Jen:
I think I have asked this questions before but don't think I ever got an answer. Is the salt/c protocol dangerous if a person thinks they have lyme but might not? Thanks, LaLa
LaLa,

My answer would be "No" but you should research this for yourself. We're talking about vitamin C and natural Himalayan salt. The way you start this protocol is very slow, with only one dose, and you listen to your body. Again, I highly recommend the book which gives information about all things lyme. The detox list alone would benefit any lymie, whether they're doing S/C or not.

Jen

 
Old 09-12-2012, 07:10 AM   #8
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Re: where is my cure?

Jen:
Thanks for your reply. I will look into that book. I have been hesitant of all the salt. LaLa

 
Old 09-12-2012, 10:20 AM   #9
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lymebgone HB User
Re: where is my cure?

Thank you for the information. One of my cognitive issues is trying to read. Can't absorb very much. but i will definitely look into it. I've heard of the protocol.This disease has robbed me of so much and is destroying my relationship with my husband. He has had enough. I have other health issues that started in 07 and then throw the lyme on top and he is tired of having no life also. My kids don't understand and i don't have much support.I feel lost and scared, and all alone and so tired of being sick and tired.any way thanks again for the info.

 
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Old 09-15-2012, 08:19 AM   #10
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Re: where is my cure?

My condolences to you on this struggle. I was first diagnosed with lyme in 2008. It took 7 doctors before I saw a lyme one and the symptoms were horrendous and I was near death. I recovered for a while after antidepressants, but I have not been "right" since. You should see a psychiatrist if you haven't, best wishes.

 
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Old 09-29-2012, 06:35 AM   #11
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Re: where is my cure?

Quote:
Originally Posted by DavinoPA View Post
My condolences to you on this struggle. I was first diagnosed with lyme in 2008. It took 7 doctors before I saw a lyme one and the symptoms were horrendous and I was near death. I recovered for a while after antidepressants, but I have not been "right" since. You should see a psychiatrist if you haven't, best wishes.
Hi, can you tell me how long you've been in treatment? I've been in trtmnt for ten months. I've had a major setback about ten days ago. I can't hold anything in- I eat and it goes right thru me, I feel weak, dizzy, and foggy. My llmd wants me to stop my antibiotics for three days to see if this helps. I'm scared to do that. I take a ton of supps. I'm sad because I was doing so good. Now I feel horrible again.
Thanks!
Annalisa

 
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