posted
My friend has been battling LD for almost 20 years. He has been on antibiotics for almost 15 years, and is convinced he will die if he stops taking them. He said he has tried, and loses his vision/consciousness, and has had to go to the hospital.
I want to help him, I believe he can get better. He has seen some of the best doctors around but I know there has to be an answer for him. Or do you think that's just too much antibiotics for anyone to get past?
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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posted
Personally, I don't see anything wrong with taking antibiotics if they are helping, as long as pro-biotics are also being taken.
But improving from Lyme disease requires more than antibiotics - it includes detoxing, and fortifying the body. For example, magnesium is usually low and needs supplementation. The immune system usually needs strengthening.
The doctor should be doing bloodtesting for biochemistry levels and then boosting various systems that need it.
Posts: 13171 | From San Francisco | Registered: May 2006
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poppy
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posted
That's what it takes for some of us to avoid permanent damage from lyme disease, and stay alive and functional. Until they find a better treatment for the ones who were not caught at the early stage or treated adequately at that stage, we are stuck with it. Unfortunately, the govt health agencies are pretending chronic lyme does not exist and aren't funding studies for better treatment. The only things that are being done are patient funded.
He needs to be sure that everything else that might be affected negatively by lyme is also being considered, like thyroid function, adequate B vitamin supplementation, probiotics, and usually some kind of anti-fungal if diet is not strict enough.
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by Robin123: Personally, I don't see anything wrong with taking antibiotics if they are helping, as long as pro-biotics are also being taken.
But improving from Lyme disease requires more than antibiotics - it includes detoxing, and fortifying the body. For example, magnesium is usually low and needs supplementation. The immune system usually needs strengthening.
The doctor should be doing bloodtesting for biochemistry levels and then boosting various systems that need it.
He has taken massive amounts of probiotics, magnesium, and liver support, and all his blood tests indicate his liver is healthy. In fact, his liver tested better than mine and I've only been on abx for 7 months!!!
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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quote:Originally posted by poppy: That's what it takes for some of us to avoid permanent damage from lyme disease, and stay alive and functional. Until they find a better treatment for the ones who were not caught at the early stage or treated adequately at that stage, we are stuck with it. Unfortunately, the govt health agencies are pretending chronic lyme does not exist and aren't funding studies for better treatment. The only things that are being done are patient funded.
He needs to be sure that everything else that might be affected negatively by lyme is also being considered, like thyroid function, adequate B vitamin supplementation, probiotics, and usually some kind of anti-fungal if diet is not strict enough.
He's pretty on the ball with all those elements as far as I know. I appreciate the advice though
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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Judie
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Member # 38323
posted
"My friend has been battling LD for almost 20 years. He has been on antibiotics for almost 15 years, and is convinced he will die if he stops taking them. "
Unfortunately, that's a reality. There are people in my support group who know people who have died when they stopped anti-biotics. These were people with very advanced Lyme and insurance wasn't going to pay for antibiotics anymore. It's very sad.
Long-term antibiotics are what people do when they decline like your friend when he stops them.
My Lyme support group leader has been on them for about 15 years. She says she has a tissue type where she just can't ever get rid of Lyme. It's like embedded in there.
On the plus side, she has more energy and does more than most healthy people do. I've met another lady like her that's been on antibiotics for 20 years.
Both do this because they decline quickly if they stop them.
Posts: 2839 | From California | Registered: Jul 2012
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quote:Originally posted by Judie: "My friend has been battling LD for almost 20 years. He has been on antibiotics for almost 15 years, and is convinced he will die if he stops taking them. "
Unfortunately, that's a reality. There are people in my support group who know people who have died when they stopped anti-biotics. These were people with very advanced Lyme and insurance wasn't going to pay for antibiotics anymore. It's very sad.
Long-term antibiotics are what people do when they decline like your friend when he stops them.
My Lyme support group leader has been on them for about 15 years. She says she has a tissue type where she just can't ever get rid of Lyme. It's like embedded in there.
On the plus side, she has more energy and does more than most healthy people do. I've met another lady like her that's been on antibiotics for 20 years.
Both do this because they decline quickly if they stop them.
I believe him, I just don't want to believe he will never be able to get off them, it makes me sad...but maybe that is just reality for some people, as you say.
The one reason I still have a lot of hope for him is that he really hasn't experimented much with herbs or Rifing. We'll see what happens...
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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GretaM
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posted
There are a few in my support group who decline very quickly off IV abx.
It is very sad. Some have ports now because it is safer (?) for them than a PICC. (Maybe easier...see droid and my conver below regarding)
Some have been treating for a very long time.
One treated for 10 years before being able to go off abx safely. Now lives a very good, medication and abx free life
Maybe there is hope for your friend?
Does your friend have neuro lyme?
[ 03-27-2014, 07:53 AM: Message edited by: GretaM ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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droid1226
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posted
My Dr. says I might be on IV for life. I always crash hard and end up in bed for weeks when I get off IV. But I'll never accept it. Always trying to address metals, mold, yeast, etc...
Greta, do you know people that have ports over picc cause it's safer? I thought most fatal infections from IV come from a port. I know infections from both are dangerous..I've had both, would never get a port again. That's just me.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
If, for instance, your friend has Lyme in his brain, which is common, and it's been there for a long time before diagnosis, it is very difficult to irradicate it.
There is no immune system in the brain. So, unless someone can totall erraicate it in the brain (and how do you do that??), you may have to be on them for life.
I am likely in the same position myself.
Rife and herbs are no match for that, unless you are very, very lucky. When I was first diagnosed, after decades of tick bites and severe illness, I wasted valuable time doing Rife and herbs, ozone, colloidal silver, etc., etc. I only got horribly worse, to the point that I now have severe brain damage as seen on an MRI.
Some of us are way beyond Rife and herbs---in fact many of us. Sadly.
Posts: 3792 | From around | Registered: Mar 2008
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quote:Originally posted by GretaM: There are a few in my support group who decline very quickly off IV abx.
It is very sad. Some have ports now because it is just safer for them than a PICC.
Some have been treating for a very long time.
One treated for 10 years before being able to go off abx safely. Now lives a very good, medication and abx free life
Maybe there is hope for your friend?
Does your friend have neuro lyme?
Most of his symptoms are cognitive/psychological (moods, anxiety, depression), with migraine headaches mixed in. Some back pain here and there, and he had a lot of muscle twitching originally but not anymore.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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Phoiph
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Member # 41238
posted
colonelforbin...
I had severe Neuro Lyme for 8 years with the symptoms you mention above, and many more.
I was very ill when I had to go off of IV antibiotics after 9 months due to toxicity (plus lack of response), and still tested positive for Garinii (Neuro Lyme strain) and coinfections at that time.
I continued to deteriorate (unable to leave the house) and could tolerate no formal Lyme treatments for the next 5 years until I started mHBOT at home.
I am well now and medication free...after a protocol that includes daily mHBOT,a gut/nerve healing diet, and graded exercise.
With a doctors supervision, your friend could consider adding mHBOT, and if he responded favorably to the immune support, etc. it provided, could possibly reduce his dependence on antibiotics with careful monitoring by his doctor.
If you live near each other, maybe you both could share a chamber...just a thought...
Posts: 2082 | From Earth | Registered: Jul 2013
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GretaM
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posted
Droid-maybe I'm confusing the lingo? When I say port, I'm thinking of the "button", the little insert under the skin on the chest.
Often used in chemo patients.
I didn't realize the risk of infection was greater with those. I thought the skin added an extra barrier to protect from contamination.
Razzle-I don't much like the sound of neuro lyme for life. What you say makes logical sense but I hope not.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Here is some very good information from poster 'TF':
"Many doctors treat lyme disease, but very, very few know enough to actually get rid of it for a person. So, inquire among lyme patients and lyme support groups to find that doctor who knows how to get rid of this disease for a person.
I and 5 of my friends have gottten rid of lyme disease by going to lyme doctors who follow the Burrascano lyme treatment protocol found here:
Read and STUDY this document to get an education on this disease and how to get rid of it.
The Burrascano protocol is also listed at the top of the Medical Questions forum on LymeNet.
The Burrascano protocol is a 4-pronged approach:
high dose combinations of antibiotics (NOT taking only one antibiotic at a time but many)
supplements and herbs
an anti-yeast diet (to combat the yeast side effect of high-dose antibiotics)
one continuous hour of weightlifting every OTHER day (to boost the immune system; the only way lyme can ultimately be cleared)
The antibiotics must be taken until the patient is symptom free for at least 2 months (if sick for a year or more)
I had undiagnosed lyme, babesiosis, and bartonella for at least 10 years before a doctor thought to test me for lyme. Still, with a good Burrascano-type doctor I got rid of my diseases. I completed my treatment 9 years ago now, and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease."
I would also add that parasites need to be addressed. You can read much more on the "Parasite Warriors Support Thread" here:
The top LLMD, Dr. H., at the 2011(?) Lyme Conference declared that parasites are now considered the number one co-infection. Another top LLMD, Dr. K, says that parasites need to be addressed before Lyme can be treated.
Hope I gave your friend some food for thought.
Posts: 9020 | From Illinois | Registered: May 2006
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poppy
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Member # 5355
posted
The outcome of treatment of lyme patients varies a lot, so the story of one or even five people does not necessarily apply to everyone. It is misleading to claim otherwise.
Droid, I am in the same situation and don't know if I can stand it.
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by Phoiph: colonelforbin...
I had severe Neuro Lyme for 8 years with the symptoms you mention above, and many more.
I was very ill when I had to go off of IV antibiotics after 9 months due to toxicity (plus lack of response), and still tested positive for Garinii (Neuro Lyme strain) and coinfections at that time.
I continued to deteriorate (unable to leave the house) and could tolerate no formal Lyme treatments for the next 5 years until I started mHBOT at home.
I am well now and medication free...after a protocol that includes daily mHBOT,a gut/nerve healing diet, and graded exercise.
With a doctors supervision, your friend could consider adding mHBOT, and if he responded favorably to the immune support, etc. it provided, could possibly reduce his dependence on antibiotics with careful monitoring by his doctor.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
colonelforbin...I just PM'd you...
Posts: 2082 | From Earth | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lyme is so complex. There are viruses, molds, heavy metals, parasites, HPU/KPU, nutritional deficiencies, adrenal issues, and more. If patients ignore even just one of them, it can impede progress.
Also, genetic issues are another reason why people struggle. You cannot just ignore them if you're struggling (JMO). I suggest 23&me (no affiliation whatsoever). IMO, the raw data they provide is valuable. Identifying and supplementing for them can be just as important as diet. Unfortunately, patients won't know where the problems are until they test for all of the above.
Lastly, parasites are a huge reason why patients don't get well. As Hopingandpraying said, parasites are considered the number one co infection (2012 ILADS conference). If you don't knock them back, they just keep growing and deteriorating their host. That's how nature designed them. We just have to knock them back like we do for our pets.
If the patient has done all of the above and still hasn't progressed, then I would seek out a GOOD Dr. K practitioner (JMO).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Greta -- I always thought a port infection was more serious than a PICC line infection because the port is closer to the heart. Hubby only had PICC lines and never a port so I can't compare the 2.
In my opinion, if I was the patient I would get a blood smear from either Clongen or Fry Lab. Many people including some LLMD's do not recognize the seriousnous of bartonella infections. And bart needs somewhat different meds than lyme.
Dr B says in his notes and hubby was proof that if you get worse within a week of stopping antibiotics it is probably from bart instead of lyme.
A brain SPECT scan would be the best way to assess brain inflammation from whatever tickborne infections are involved.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Thanks Bea.
My bartonella symptoms have faded to zero but I will keep bartonella in mind if I regress when I stop IV abx again.
Sure is scary how fast lyme imitates ALS symptoms in me.
(Did? Won't know until I try to stop again)
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Seriously, just about everyone these days, Lyme or not, takes some sort of pharmaceutical drug daily.
The fact that your friend takes an antibiotic must mean he needs to be seen regularly and ongoing by an LLMD,
obviously not covered by his insurance. Because if he went to his insurance Dr. and said I need Doxy daily to function,
he'd be thrown out the door like he was asking for crack cocaine.
However if he wants to get an antidepressant, a antipsychotic drug like risperadone or Abilify, PPI's, a steroid, heart medication, pain pills for the older folks, diabetes drugs, etc.
well then sit right down we'll get you going and hooked.
(sorry)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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quote:Originally posted by surprise: Seriously, just about everyone these days, Lyme or not, takes some sort of pharmaceutical drug daily.
The fact that your friend takes an antibiotic must mean he needs to be seen regularly and ongoing by an LLMD,
obviously not covered by his insurance. Because if he went to his insurance Dr. and said I need Doxy daily to function,
he'd be thrown out the door like he was asking for crack cocaine.
However if he wants to get an antidepressant, a antipsychotic drug like risperadone or Abilify, PPI's, a steroid, heart medication, pain pills for the older folks, diabetes drugs, etc.
well then sit right down we'll get you going and hooked.
(sorry)
Preaching to the choir.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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