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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone go thru this need help scared!

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Author Topic: Anyone go thru this need help scared!
Robin61
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Hey everyone, me and hubby and two kids have lyme. Here is our quick story......Hubby has never had but a few symptoms. I have full blown chronic case but manage to do alot even so. My kids have this and have been on meds for 16 mos now consulting via phone Dr J and their pediatrician and my husband yesterday read a medical abstract online written in 2003 about Long term antibiotics not making a difference.....you know the old post lyme thing. Now he is convinced we need to take our kids off of meds. I am freaking out. He doesn't realize how bad this disease is he is symptom free and probably well and i want to make sure the kids stay on them till they are symptom free i sure don't want them to turn out like me they have their whole lives ahead of them. Please help any suggestions of what to do? I am depressed and going crazy over here! Robin in Houston
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lymie tony z
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Ask your husband how he's gonna feel if he is wrong?

Most times when one gets an infection the advice is to stay on the antibiotic long after symptoms have stopped...except that is with lyme disease...in mainstream medicine anyway...why is that...

Tell hubby that long term abx is necessary and does have an impact on our health...whatever he read is not accurate.

Have him check dr B's recommendations and look up the Columbia study by Fallon.

I probably had lyme all my life and I can tell you that even though I was symptom free for a majority of my life I now have two fake knees and a lot of joint dammage and psychological baggage to deal with.....

You don't want to put a kid thru that kind of stuff.

Hope he understands.....I really hate it when kids get it....

Good luck zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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shazdancer
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Hi Robin,

You and your husband can read a few things. First I would suggest the ILADS response to the study that "proves" that prolonged antibiotics don't work:

http://www.ilads.org/position2.html -- the scientists gave chronic patients a low repeat dose of IV and oral antibiotics, then noted that they didn't work on chronic Lyme patients -- ILADS asserts that they didn't treat long enough or strong enough to make the study significant (long article). This is the study that is the basis for all the "long-term antibiotics don't work" talk from the Infectious Disease Society.

http://www.ilads.org/gaito.html -- treating early Lyme with 10 days of antibiotics often is ineffective

Then, take some time to explore the New York State Psychiatric Institue site:
http://www.columbia-lyme.org
and read up on Lyme disease and children.

And feel free to email me -- I have a child who is on long-term antibiotics for Lyme disease, and I have Lyme as well.

Regards,
Shaz

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luvs2ride
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I know most of the people on this site love abx and they certainly do have a place in medicine. But they are not infallible.

I do not place blame on any doctors who are trying to heal people sick with Lyme by longterm use of abx. After all, this is the ONLY medicine they are trained in and they are using the best knowledge they have. And many times, it works. I also do not think doctors who feel longterm use is reckless are saying this to intentionally harm us. I think they really believe longterm use of abx is dangerous business. AND IT IS!!!!!!!!!!!!!!!!!!!!!

Use it if you will, but don't stick your heads in the sand. I would feel just like you, but 10 yrs ago, my 47 yr old brother-in-law (whose father was a doctor) died of drug induced leukemia. It took him so fast. As you can imagine, his father pulled all strings available to get his son the very best treatment, the latest chemo but none of it could save him. He had type II diabetes and was suffering some vision problems. The drug given him for his eyes had a potential side effect of leukemia. On his deathbed, he said "If I had been given the choice of going blind or dying, I would have chosen going blind".

This was the first time I realized drug side effects need to be taken seriously. Before that, I just thought, "oh sure, 1 in a million chance. It will never happen to me".

Now I will still take antibiotics when needed, but I ask lots of questions first. I think this is even far more important where children are concerned. Their immune systems are still developing as are their minds and bodies.

Parents should ask questions, investigate options, weigh out risks and take a very pro-active approach to their child's care.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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dmc
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luvs2ride wrote: "Now I will still take antibiotics when needed, but I ask lots of questions first. I think this is even far more important where children are concerned. Their immune systems are still developing as are their minds and bodies."

Yes, the childrens' system are still developing but the lyme spirochete invades the tissue and even immune system cells.

So after awhile the immune system stops recognizing the spirochete, and the spirochetes continue to do their damage.

Believe me what a difference abx treatment has made in my three neices & nephew. Yes, now they can concentrate to "develope the mind" and now they are no longer complaining of pain...so they can enjoy playing things to "develope their bodies". Feeling good has made a differednce in their all IMPORTANT development.

You have got to weigh it out.

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Lymetoo
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Shaz gave you some great ammunition. I think there's also an article called When to Suspect Lyme at www.cassia.org .. That may help too.

I wish I had gotten treatment when I was a kid. Would have saved me alot of heartache and pain.

--------------------
--Lymetutu--
Opinions, not medical advice!

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luvs2ride
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dmc

That is great the antibiotics worked so well for your family.

However, let me explain to you that the bacteria simply cannot hide or become immune to the homeopathy.

This is because the homeopathy is not attacking the bacteria. The homeopathy actually is a very diluted form of the bacterias (I am also being treated for coinfections). It gives the imprint to my immune system stimulating my immune system to create the necessary antibody. The bacteria does not become immune to this antibody. The bacteria cannot disguise itself and escape the antibody. The bacteria cannot run to the brain and escape the antibody as it can with most antibiotics. The antibody created by my immune system remains in my body for long periods of time. The homeopathy is only in my system briefly.

I went to a second LLMD who uses allopathic drugs. He said homeopathy could not kill the bacteria and was only good for reducing symptoms (a clear indicator to me that he had not been listening when I told him of the tremendous herxes the homeopathy had induced). However, after he received the results of the Igenex test, he changed his mind and said, keep doing the homeopathy, it seems to be working.
My bloodwork was full of the right antibodies.

I know it is hard to imagine that something safe could also be so effective. But it is. My LLMD is a medical doctor who has received board certified training in homeopathy. He is not giving me a single remedy or two. I am on 17 remedies. 15 of which I take 3x daily and two I take once weekly. In 5 mths, I have gone from severe herxing that made me look like the Michellin Man and feel like a million bees were inside my hands and feet stinging me to minor swelling in fingers of left hand and right ankle that doesn't even require Advil.

In the very beginning of treatment, my migraines, brain fog and hearing loss all cleared up.

This stuff works and instead of fighting it, everyone should be studying it.

Drug companies will surely go up in arms over that!

Below is an interview my doctor gave in 2002 for the pain foundation that gives an explanation of homeopathy and why he uses it.

www.painfoundation.org/newsletters/PCN02summer.pdf

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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lou
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Most homeopathics are diluted to the point that none of the actual agent is left in the solution/pill that is taken by the patient. Homeopaths think the water "remembers" the agent.

There are also no clinical trials for homeopathic medicines. All we ever get are impassioned testimonials from people we don't even know.

Drugs have side effects. No one knows what they will do longterm. But there are clinical trials and published info about side effects. If you think longterm abx treatment for lyme is not accepted by "mainstream" doctors, you should know that homeopathic medicine is not thought to be medicine at all by the mainstream.

I have no problem with people taking reponsibility for their own health and making their own decisions, but it is not reponsible to be suggesting this to someone else for their kids.

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luvs2ride
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Lou

Drs aren't trained in homeopathy, therefore, how can they possible endorse or administer it?

I'm not self-treating. I'm under the care of a very competent medical doctor who is also very competent in homeopathy.

While I agree there are not many clinical trials, Stephen Buhner's book "Healing Lyme" claims...and I quote:

"There have been few clinical studies on homeopathic preparations in the treatment of disease, although more are occurring each year. Significantly, they are beginning to show that, as homeopathic practioners have insisted, there is something in what they do. In some circumstances, homeopathic medicines are exceptionally effective in the treatment of disease. There has been some degree of clinical success in the use of homeopathic medicines for the treatment of Lyme disease. There have been no clinical studies."

Lou, you simply prove the old saying that "what a person is not up on, he is down on".

I will gladly submit myself to any clinical testing needed to study the effects of homeopathy and lyme.

In 5 mths I am 90 to 95% better and nearly asymptomatic.

People have a right to know of safer choices that are also effective if they so choose to try them.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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lymie tony z
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Luvs2

Let me see if I have this right...

You take seventeen different pills or whatever to treat your lyme...and still take antibiotics?

Can you send me some of your money?

You cite someone being treated with some drug for his eyes for a symptom caused by diabetes. This medication caused his leukemia, he died and you attach it to long term abx treatments like they're the same thing...where is your reasoning?

You say your doctor is a trained md and also a homeopath and then you say mainstream md's are'nt trained in homeopathy...hmmmm
You say that the abx chase the chetes up to the brain? That's a new one for me...how do they get there if one has never had abx yet neurolyme...???


Hey. Whatever floats your boat!

But please don't try to pass this stuff off as good advice to someone who desperately needs our help here.

Kindly list the seventeen Homeopatic remedies and the abx you still need to take.

I know I would like to be ninety to ninetyfive percent better,,,,,,

zman [Wink]

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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luvs2ride
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Lymie

I'm not trying to move you from your beloved antibiotics. I'm also not taking any antibiotics at the moment.

I am getting well in a good time frame considering I have had this disease at least 10 years and doing it solely on homeopathy. My mission at Lymenet is to share my experience even if I eventually take a turn for the worse. Believe it or not, there are many people out there who would like an alternative course of treatment that is effective.

The 17 homeopathic remedies treat more than lyme and show that one single remedy such as ledum (so much touted by veterinarians) is not what is making me well.

I do not put you down for your course of treatment and would very much appreciate it if you could be just as considerate to me.

I'm not just a faceless voice in the wilderness, I back up my claims with websites and resources independent of myself. I also share freely with anyone who asks (and people do ask) my doctor's name, phone number and webpage so they can investigate for themselves.

You certainly think you have all the answers, Lymie; but believe me. You don't.

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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luvs2ride
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Lymie

Because you asked, I am including a list of my remedies. These are combination remedies meaning more complex than the usual single remedies you get in health food stores. For instance, the borrellia 1m and 10m also include babesia and erlichia. I have starred the ones I know specifically treat my lyme condition.

The remedies are FDA regulated.

My doctor was interviewed by the American Pain Foundation in 2002 and discusses why he uses homeopathy in addition to western medicine.

You can read this interview at
www.painfoundation.org/newsletters/PCN02summer.pdf
look for the article titled "Getting to the Root of the Problem"

Remedies

*Bacteria Combination
B-balance
Herpa-Pro
*Lyme Nosode
Molybdan
Mycological Immune Stimulant
*Mycoplasma
Neuro1
*Retrovir
Sprirtual
Unda #243
Tuberculinum 200K
Tuberculinum 1M
TBR-Pro
*Borrellia 1M
*Borrellia 10M
Juncturinum Plex

I hope this softens your opinion toward alternative medication. European Doctors are trained in both Western and Complimentary Medicine.

Remember, they wanted to kill Galileo when he tried to say the world was round.

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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map1131
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Luvs, thanks for your list of homeopathic. Please clarify your list for me. I will have my muscle testing chiro doc see if I could benefit from some of these.

Is the * the name of the homeopath? Or is each listed a name of a homeopath?

Thanks for your post,

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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brentb
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As scary as this sounds we need to get used to the fact that abx are on it's last legs. My story as others that I've read on here is one were traditional abx no longer worked. I'm on a health kick now with oil of oregano and invision silver as my main weapons.
The chinese have done an experiment where traditional abx and silver nanoparticles worked far more effectively than abx alone. So both in conjunction might be a good option.
best of luck

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luvs2ride
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Hi Map

The star is not part of the name. I used the star to indicate which remedies I know are specifically targeting the lyme and coinfections.

Each name listed is a separate combination remedy. 17 in all. The two borrellias I only take once a week and in the beginning they caused major herxing.

I hope this is helpful!

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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5dana8
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I am sorry this is a diffult time for you
I think you really need to do some search's and research & print them out to show your husband.

The rest of your childrens lives depend on it.
I wish I had been able to get treament in the beginning,otherwise I wouldn't have spend the last 20 years suffering.Just laid waiste to my life,wasn't able to have children ect..

I know you love your kids & am sure your husband does too.Just don't give up now.

There is too much riding on it...Like the furture lives of you and your children.
Please take care.

--------------------
5dana8

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Robin61
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Thanks everyone for your helpful replies. Dr J is consulting with me on Sat and Hubby will consult with him after me regarding the kids and long term antibiotic treatment. I only hope he can convince hubby how critical this is. Thanks again everyone! Robin in Houston
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lymie tony z
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Luvs,

Actually they wanted to get rid of gallileo cuz he took the earth and man from being the center of the universe and claimed the earth(man) revolved around the sun rather than everything revolving around planet earth...

Look, if all this stuff is working for you...god bless...

If taking so called dilluted forms of these diseases were even remotely effective they would be in a preventative nature as in a vaccine...

I suspect you are not experiencing a herxeimer reaction at all...
I suspect that you are experiencing contraindicated supplement reactions...

Just how much does this regimen cost per month?

Is it as much as a rife machine or other scifi approaches to this disease?

Thanks for the list...I've personally never heard of any of them....
I don't necessarily put much credance in the FDA approval of these supplements or any for that matter....cuz most of them come with a disclaimer about not being a cure for anything...which gets them past the FDA.

I suspect you've been duped...be that as it may...I wish you well...zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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luvs2ride
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Good luck in getting well zman.

In 5 mths, I have spent under 1500. How arrogant of you to assume I did not experience a herx.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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shazdancer
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Good to hear that you are talking to Dr. J, Robin! I think he can talk to your husband in a way that might make him understand the urgancy of staying with the antibiotics.

Sorry, luvs2ride, but I just can't see how if someone is already infected with a disease, how giving him just a little more of that same disease, diluted down to basically nothing, would help. It arrives in the bloodstream at the cellular/molecular level same as the concentrated disease does, shaken up or not. It makes no sense that one more bacterium could make a positive difference in the immune response.

I would guess that many of the things on your list of meds are supplements, and not homeopathic remedies. I would guess that they may be helping. I'm glad of that, because Lyme is sure no fun to live with!

Hope you continue to improve,
Shaz

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luvs2ride
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Shaz

They are all homeopathic remedies and nothing else. You guys are so talented at diagnosing me and my remedies from afar. Are you psychics?

Please read Dr Klinghardt's article on Looking beyond Antibiotics where he talks about homeopathic remedies as one source of stimulating the immune system.

Keep poopoohing that which you know nothing about while I continue getting well.

Here is an interview of my doctor by the American Pain Foundation titled "Getting to the Root of the Problem". Perhaps you will believe him.

www.painfoundation.org/newsletters/PCN02summer.pdf

Your skeptisism does not change to truth.

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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TerryK
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I feel for you Robin. I've been sick off and on and disabled since age 32 due to what appears to be lyme/co-infections caused by a tick bite that I got at age 5 and now I'm 50. I do not want to see anyone else lose so much of their life to illness. Do what you have to do in order to get help for your children. Talk to their doctor to see if he can point you to statistics or information that may help support your position. If there are none, then maybe you need to look for other treatment modalities to augment or replace antibiotic therapy. Personally, I always approach health issues by trying to combine the best of both worlds (allopathic and alternative).

As for homeopathics, they are effective in the right hands. I've used them for years for symptom control and they have been extremely helpful. You have to get the right remedy for your particular problem and that takes someone who knows what they are doing or just plain luck.

Homeopathy and other alternatives are embraced in many other countries. In the U.S., drug companies and the AMA run the show which often leaves those of us who are ill with limited options unless we are open minded and embark on our own journey in order to determine what will work for us. Just because the U.S. medical establishment does not understand or embrace something does not mean that it is invalid.

A good example of how the medical establishment can easily be really wrong is to look at lyme disease itself. How many would be getting treatment for lyme or co-infections if they relied on the medical establishment? We must have the ability to find and pay for treatment by one of the few LLMD's who is willing to buck the medical establishment.

Homeopathic medications are classified as "Drugs" by the FDA. There are some clinical trials for homeopathic medications but the reason that there aren't very many is $$$. Who will pay for these studies?? Certainly not the drug companies, especially if homepathics might actually cure someone of an illness for relatively little money. Here is a link to some information about clinical studies if you are interested:
http://www.boiron.com/en/htm/04_recherche_homeo/recherche_clinique_03.htm

I've been using alternative therapies for years with some success. I didn't know that I had what appears to be lyme until recently (thanks to denial by the medical establishment) so hopefully I can get good results with the combination of allopathic and alternative treatments. Several other members in my family who are also ill with this and don't use alternative methods to help themselves are bedridden. I've been sick longer than they and I'm doing better because I use alternative modalities. They won't/don't and they are suffering for it.

It pays to be open minded when it comes to dealing with illnesses that are so poorly undertood, *especially* when it comes to our children.

Robin, I hope that your family gets the help they need to live a healthy, infection free life.

Terry

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tequeslady
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You're right, Tony, stick with the products of the drug companies, like you've been doing. Because after all, they've made you well, haven't they. [Wink]


quote:
Originally posted by lymie tony z:
Luvs,

Actually they wanted to get rid of gallileo cuz he took the earth and man from being the center of the universe and claimed the earth(man) revolved around the sun rather than everything revolving around planet earth...

Look, if all this stuff is working for you...god bless...

If taking so called dilluted forms of these diseases were even remotely effective they would be in a preventative nature as in a vaccine...

I suspect you are not experiencing a herxeimer reaction at all...
I suspect that you are experiencing contraindicated supplement reactions...

Just how much does this regimen cost per month?

Is it as much as a rife machine or other scifi approaches to this disease?

Thanks for the list...I've personally never heard of any of them....
I don't necessarily put much credance in the FDA approval of these supplements or any for that matter....cuz most of them come with a disclaimer about not being a cure for anything...which gets them past the FDA.

I suspect you've been duped...be that as it may...I wish you well...zman


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shazdancer
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Hi luvs,

I have read up on homeopathy. I just don't agree with its premise. And I just read the article you cited, and still don't agree. I am sorry if I misspoke about what you are taking, and glad you are feeling better.

Shaz

Posts: 1558 | From the Berkshires | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
luvs2ride
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Shaz

I don't understand its premise, I only know I am better. I'm not trying to say one treatment over another, but I do want to tell my story so others who want an alternative to abx will know of one that has certainly been effective in treating my lyme.

Peace.

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

Posts: 3038 | From america | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
   

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