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07/21/2008 11:22 AM

so scared...is chronic lyme curable?

mammabear
 
Posts: 25
Member

I am really, really scared! My son (18 months old) and I were diagnosed this past April with lyme. I have babesia and erlichia, as well (but not my son apparently). I know I've had these infections for five years now undiagnosed and untreated as I remember the bulls eye rash and flu the summber of 2003. I passed this infection to my son congenitally or from breastfeeding him (not sure which). We are both currently under antibiotic treatment from a LLMD. My son is on amoxicillin and zithromax. I am currently on Mepron, Zithromax, and artimisinin. I was on bicilin for three months prior to that.

My question really is this: will we be cured or is lyme and coinfections for life? I cannot bear this as I am terrifed of the future for both myself and my precious angel, my son. Please help!

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07/21/2008 02:06 PM
lymemd
Posts: 70
Member

Lyme is curable. It is not passed by breast feeding but can be passed in utero through the placenta. If the case is severe IV antibiotics may be needed. Many LLMDs seem to reluctant to do this. Babesia and Ehrlychia should be cured within 4 months. Lyme can take years. ILADS reports that chronic Lyme patients are usually able to stop therapy after one to four years. Incidentally, Zithromax doesn't work well unless combined with Plaquenil.(I would not give this to a child).

07/21/2008 04:30 PM
ConnieD
ConnieD  
Posts: 808
Member

My doc also said that Lyme can be eradicated. I always wondered about that, too. Lyme is so sneaky and can go into that infamous cyst form which is so hard to treat. I don't understand all the scientifics of the life of the organism, but I have read that it can take up to five years to kill them all. I've been on my natural antibiotics since March of 2007. I took a break from October to January 2nd. I had a little relapse in January. There was a misunderstanding between me and my doc. I was supposed to take my antibiotics in cycles during that period of time instead of not at all. If I had followed the directions correctly, I probably could have avoided the relapse. Oh well, lesson learned. Plus, I had a reinfection in May of this year. So, I'm still taking my natural antibiotics.

So, try not to be scared of the future. When I start to worry about the future, I remind myself that getting through the day is the most important right now. You are doing what you need to do to eradicate Lyme. You know what to do. Keep reading, researching and asking lots of questions. Knowledge is the power to get well.

Peace,

Connie


07/21/2008 08:46 PM
mammabear
 
Posts: 25
Member

Thank you both so much. I feel a little better. Lymemd, are you a doctor? I ask this because of the md part of your screen name.

07/23/2008 06:12 AM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

amoxi is a good choice for a child, and usually first line of defense. I would question the zith, that's a pretty powerful one.

as for lyme being or not being passed thru breast milk, I have to disagree. I have read study after study that it's been passed thru breast milk, as well as congenitally. If these little buggers can hide ANYWHERE in the body I don't think it'd be opposed to breast milk.

I know one of the top ILADS docs who even goes so far as to say couples can keep passing it back and forth just from kissing. That I think might be taking it a little too far. So hard to tell with this disease.


07/26/2008 11:13 AM
lymebytes
lymebytes  
Posts: 65
Member

Lymemd,

Yes, yes and yes again - Lyme is passed through breast milk. Igenex has PCR testing for breast milk. I quote Dr. Burrascano from his guidelines page 21: "It is well known that B. burgdorferi can cross the placenta and infect the fetus. In addition, breast milk from

infected mothers has been shown to harbor spirochetes that can be detected by PCR and grown in culture." Source: http://www.ilads.org/files/burrascano_0905.pdf

Also, I am sorry...I have never heard of zith and plaquenil used together, a more common combo is Biaxin/plaq. Plaquenil users need to know to have their eyes checked before starting use and every 6 months while on it as it can cause serious eye problems if not caught early.

Zith is an excellent drug that kills Lyme, Bartonella and because it has more gram negative capabilities (than Biaxin) it has been known to kill even Ehrlichia. It is a tough drug for many (because of the long half life) to handle and many LLMD's pulse it 2 or 3 days per week.

I killed Bart and HGE w/Biaxin, quite effectively, it took a year and half of being on Biaxin.

Lyme protocols change quickly, Zith is now considered a first line choice by many LLMD's for Bartonella and more.

If you really want to help patients get well (not cured - Burrascano says, think "well" not "cured" Source: Hope to heal lyme conference) Oral Azithromycin/Flagyl is proving to be very effective.

Other meds getting people well are the sulfa's, Bicillin/Biaxin, IM Rocephin even Doxy. Oral Doxy penetrates the CNS as well as IV Doxy (source: Pubmed.com) trials in the UK prove it is a first choice for neuro lyme.

It is very exciting to see an Md interested and treating LD patients, as we need more Lyme doctor's in this country.

I highly recommend Turn the corner foundation: http://www.turnthecorner.org/#SlideFrame_1 They have grants/initiatives in training doctor's to become LLMD's.

Also, a there is now an online LLMD that answers questions - he has an open forum for doctor's to talk with them: http://drerniemurakami.com/forum/

You may want to do some study at pubmed, google scholar and even Canlyme as well...all good sources. Also here is a whole list of conference notes, that are great for studying what some of the best LLMD's in the country: http://www.betterhealthguy.com/index.php?option=com_content& task=view&id=61&Itemid=79

~~~~~~~

Mammabear -

Lyme can be controlled. My son and I have it. 6 in my family have it! My son is a teenager, he was near death at age 7 and had a relapse at age 17. He is thankfully completely into health and nutrition and functional.

Don't be afraid! Please be informed. Lyme can go into a remission and last a lifetime.

I hope you are seeing a reputable LLMD, one that specializes in pediatric Lyme, this is important.

The best pediatric LLMD said, "Children can get well". Just yesterday I was watching a Lyme conference on DVD. The ILADS LLMD quoted Dr. J saying this. The elderly do the best for some reason, children can get well and everyone else in between can experience all kinds of things.

Co-infections, should be dealt with concurrently or BEFORE lyme treatment. Babesia can be a difficult one, but Zith/mepron are quite effective for adults.

Again, as far as your son..a pediatric LLMD is necessary since they require different treatment. Some LLMD's treat both adults and children.

Most mother's who are Lyme carriers are living with children who have Lyme, I know quite a few.

You aren't alone.

Take care.

Post edited by: lymebytes, at: 07/26/2008 11:27

Post edited by: lymebytes, at: 07/26/2008 11:44


07/26/2008 02:15 PM
mammabear
 
Posts: 25
Member

I really have to admit...this is NOT what I was hoping to hear and this is why I am so incredibly confused! Why does no one agree? My LLMD says lyme is curable, lymemd (on this site) says lyme is curable. Dr. Jones (pediatric lyme specialist) told me lyme is curable in adults and children, Dr. H (of IGENEX) told me lyme is curable. I thought Dr. Burrascano believed that lyme is curable. Karen Vanderhoof of the Lyme Disease Foundation told me lyme is curable. I DON'T GET IT!!!! This truly is the most frustrating thing for me. I really want to believe that lyme is a CURABLE disease, but I don't want to have false hope for myself and my son, either. I just want us to be cured and go on with our lives....never, ever to worry about lyme again. Are the experts I quote above just telling me it's curable to make me feel better? I wouldn't think so as it seems not normal for a physician to be untruthful about these things. Can I please get some input from others? Do the majority of your doctors believe it is or is not curable? I can't even tell you how frustrated I am with this. I just want to know the truth!

07/26/2008 06:22 PM
hanna
hannaPosts: 16
Member

I go to the same clinic that Connie, Denise, and ARF go to in Ga. I started with my treatments six weeks ago. When I asked the Dr. if lyme is curable he said he believes it is. It is frustrating when you get different answers but we all have to think positive.

07/26/2008 08:28 PM
ARF
 
Posts: 392
Member

Hi Mammabear,

I think we all share your frustration, we all want to get well and put this horrible nightmare to rest, but we just don't know if that is possible. My son is 27, spent 2 1/2 years getting diagnosed. I spent so much time getting help for him that I didn't pay attention to myself, I was diagnosed in June. Our clinic has had great results with individual treatment so we are hopeful.

Wish the best for you and your son.

Don't give up!

Ann


07/30/2009 02:37 PM
johnnyjeep
Posts: 2
New Member

It took me about one year to get diagnosed with Lyme but Im in the trenches now fighting hard to beat this. I am no expert but I have done my share of reading and meeting people that have or have had Lyme. The one that stands out the most is the story one of my best friends mom. She was diagnosed with MS for eight years and received years of steroids (a huge no no for Lyme) and ended up losing her job and was forced to use a wheel chair. She later found a doctor who diagnosed her with Lyme instead of MS, he put her on IV antibiotics. She has now been 10 years without symptoms and lives life to the fullest. I remember her saying "you name the symptom and I've had it, I've had them all", she now considers herself cured!!

The fact is Lyme reacts different with everyones body and some people take the fight serious and some don't. Lyme is treatable at all stages and it is up to us as Lyme patients to take advantage of everything that is available. I have had 8 weeks of Iv's and now Im following it with 3 months of oral, and prior to the IV's I was on orals for 2 months from another dr. Im feeling much better, my doctor has told me that the Lyme could be out of my body but it just takes time for your body to heal. So just because we have symptoms doesn't mean we have an active infection. Stay positive and pray hard, you can beat this disease!!

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