Lyme

September 8, 2001

Here are some websites and information about another person's horror story

about Lyme. Hope it helps someone! KC in TX

November 24, 2001

Rhonda,

I don't think there is a lyme doc in AZ. I write to one gal from the

Phoenix area and she sees Dr. J as I do in Vegas. He comes every 6 weeks

and you can schedule an appointment through Rene at this web site:

http://members.aol.com/_ht_a/reeeneee/myhomepage/business.html?mtbrand=AOL_U

S.

Hope this helps.

Larry NV

June 4, 2002

Hi

Yes Lyme can mimick Candidiasis along with many other things such as

Lupus, Fibromyalgia (sp?), MS and many others. I have lots and lots

of information on Lyme email me (ebbyban@...) if you want me to

send you links. In the mean time you can check out lymenet.org it

has great info and and a great message board that is similiar to this

one.

I ended up with the Candidiasis from all the antibiotics that I have

been taking for lyme. I just can't seem to win here. And I'm

starving to death!!! The Doc won't give me anything to kill the

yeast until I'm off the antibiotics (which is hopefully this month).

So in the mean time other taking acidophilus I'm just trying to

starve the yeast that I already got.

I did make an appt with a Homeopathic doc but I gotta wait another 3

weeks for the appt. Ughhhh!!!! All I want is a Pizza!!!!!! I have

not eaten anything that tastes good for soooooo long!!! I did have a

Corona in July of 2000, I think the last time I had any good bread

was around Jan of 2002.

If you need any of the info I got just let me know!!

Hang in and Stay Strong

>

October 12, 2003

Lyme

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

4519082 & dopt=Abstract

http://www.ashley-pub.com/vl=13095186/cl=13/nw=1/rpsv/cw/apl/13543784/v12n10/s1/\

p1609

Expert Opin Investig Drugs. 2003 Oct;12(10):1609-14.

The Lyme Wars: time to listen.

Stricker RB, Lautin A.

Department of Medicine, California Pacific Medical Center, 450 Sutter

Street, Suite 1504, San Francisco, CA, USA. rstricker@...

Lyme disease represents a public health threat of major proportions. The

murky science and acrimonious politics of Lyme disease have created barriers

to reliable diagnosis and effective treatment of this protean illness. Two

major clinical problems with the disease are the absence of a therapeutic

end point in treating Borrelia burgdorferi, the spirochetal agent of Lyme

disease, and the presence of tick-borne co-infections, such as babesiosis,

anaplasmosis and bartonellosis, that may complicate the course of the

illness. From a pathophysiological standpoint, the affinity of B.

burgdorferi for multiple cell types and the presence of non-replicating

forms of the spirochete have contributed to persistent infection and failure

of simple antibiotic regimens. Newer approaches to the treatment of Lyme

disease should take into account its clinical complexity in co-infected

patients and the possible need for prolonged combination therapy in patients

with persistent symptoms of this potentially debilitating illness. The risk

and prevention of human transmission of Lyme disease merit further study.

PMID: 14519082 [PubMed - in process]

-------------------------------------------------

January 14, 2004

Hi,

I am also on the lymes group and have been learning lots. You might want to go there(lymes-rife group). I just found out about Artemisinin(AllergyResearch carries this). Also, the person needs extra magnesium as the babesia tends to deplete it(so I've read). Many are doing ozone therapy(mostly in their saunas, which is helping). Some do hydrogen peroxide baths(with food grade hydrogen peroxide). The ALL find that the lymes is extremely difficult to rid(I don't think the QX can do it alone). Many are finding success with the B3 rife device---but that even takes a long time of treatments(and it is quite powerful).

So, I suggest going to that group and you will learn alot---but lymes is very tough to get rid of(and it is very dangerous----people die of this).

Laurel

lyme

Does anyone have a protocal for Lymes? A homoepathic, extra vitamins or herbs?

Thanks

Ann

riners@...............................................

January 18, 2004

Ann,

Attachments are not allowed through Lyme Aid. This is to protect the list

from computer viruses.

You can " copy and paste " your information into an email though.

Let me know if you have any questions!

=)

Robynn

[ ] Lyme

Drew -

I know this will probably sound odd to you, but I a so glad you found out

when you did - many people don't get diagnosed in the ER - You must live

where Lyme is understood.

I am attaching an article from Alternative Medicine and " My Story " that may

help you with some attachments that are included in these stories.

My first and best advice is to get yourself to a Lyme Literate Doctor - tell

this group where you live and you will get the help you need - this is a

great group! I live in Arizona and go to a doc in Missouri but can have

phone appointments when I need to.

Best of everything to you!

Ann

November 9, 2005

Dear Ann

Well said my dear , well said ;-)

I hope everyone is having a better day ~!

Kat

April 5, 2006

Thank you. that was me.

On Apr 5, 2006, at 7:04 PM, Merlyn wrote:

> Someone from th e group emailed me about lyme tests. I lost the

> email.I believe a good indicator test for lyme can be found on dr

> shoemakers site www.chronicneurotoxins.com. Test is called a vcs (

> visual contrast sensitivety) and is specfic for certain toxins

> including lyme. Lyme bacteria produce toxins as they are living and

> turn into toxins when they die. Test is less than $10.00 If it is

> positive email me again and i can advise further.

>

> Merlyn

>

September 15, 2010

Hi Angelia...

If you do a search for " Cleremond2000 " on this newsgroup you should find many of

my posts regarding Lyme Disease.

I was DX'd with RRMS in Feb of 2008 but in Sept 2009 was re-DX'd with Chronic

Neurological Lyme Disease. My Lyme diagnosis is clinical with a supporting

" positive " on my IGENEX IgM WB test. I never would have found out this is what

I am fighting if it hadn't been for LDN and this newsgroup.

I first took LDN for my MS in Feb of 2009 and in the first three months saw much

improvement only to get far worse than I was in the following three months of

use. Members on this forum pointed me to the fact I might have a long term

systemic bacterial infection that was stirred up by the LDN.

I researched diligently and began treating myself as if I had Lyme using a

product called " Samento " . I herxed majorly at 15 drops 2xDay. A tell tale sign

of a major bacterial die-off. I treated myself for another two months using

Samento and Cumanda and then was tested at Igenex Labs. Yep....Lyme!

Currently...I have undergone 12 months of ABX under the supervision of an LLMD

with 18+ years of exp treating Lyme. He had me on Doxy and Amoxy for the first

4 months then Minocycline for the last 8 months.

I am worse...there is no doubt about it. But I am confident that my decreased

functionality (I have terrible ataxia and balance problems. My hip flexor

muscles don't seem to get a good signal anymore from my brain making lifting my

legs very difficult and when ever I am active for more than a few minutes I get

acute onset fatigue) is a result of collateral damage caused by treating the

disease. As the abx and my immune system attack and kill the Lyme...that

continued inflammation does more damage to my CNS making my symptoms worse.

LDN is a cornerstone of my therapy. The extra endorphins help my mood

tremendously and make the emotional challenges of having this disease and

suffering its debilitating effects easier to handle. I also haven't had a cold

since I started the drug in Feb of 2009.

I am currently on a 3-month Short Term sabbatical from work so that I can focus

on my Physical Therapy.

I have tons of information on Lyme Disease and also a copy of Dr. Horowitz's

" Lyme Treatment Guidelines " in PDF format.

Us Lymies need to stick together...so if there's anything I can do or you'd line

copy of my Lyme info....let me know.

- KenC.

>

> I noticed a few people posting on lyme. I was diagnosed 4 years ago with RA

and

> I started LDN in May of 2010. After starting LDN, my symptoms increased and I

> felt worse so I got a lyme test and was positive. Next week I am going to see

a

> lyme doctor to decide what to do, although after 4 years of having this

disease,

> I am wondering if there is any hope of getting rid of it.....especially since

> I've used the antibiotic protocol to treat my RA. I don't know how helpful

LDN

> is for lyme but I'm hoping its going to help me. I felt good for a couple

> months now I'm starting to feel bad again. We'll see. I'm only taking 1.5

mg

> because when I tried to increase it, my symptoms got way worse and I battled

> nausea with it. If anyone else has had experience of LDN and lyme, please

> chime up.

> ----

> Angelia

>

September 16, 2010

Angelia,

I think I can agree with KenC on many many

things and I have been taking LDN for almost a year now, 3 mg/night; I was at

250 lbs, down to 240 lbs and losing now; 4 years ago when this started was at

220 lbs. NO known health issues before this! I have posted to the

group and to individuals with my 4 year story, but will try to use Ken’s

format, filling in and changing for my info as needed, hope you don’t mind

Ken since yours is a little more to the point than my usual, I go overboard.

I still added too much!

I was DX'd with RRMS in Jul of 2007 (double vision) but in Dec 2009 was

re-DX'd with Chronic Neurological Lyme Disease. My Lyme diagnosis is clinical

with a supporting " positive " on my IGENEX WB test. I never would have

found out this is what I am fighting if it hadn't been for LDN and this

newsgroup!

I first took LDN for my MS in Oct of 2009 and got worse AFTER 4 WEEKS on 3

mg/night LDN, was in bed with balance issue FOR A WEEK, BUT did not stop my

LDN, which may or may not have been a good idea, but that’s what I did.

Like Ken, persons on this forum and other web sites talked of bacterial

infection (aka LYME and co-infections) that was stirred up by the LDN,

and about problems possibly arising 4-6 weeks in may be indication of

undiagnosed/untreated LYME. LDN was described somewhere as “turning

the lights back on for your immune system”; Lyme can wrap into your DNA

and hide from your immune system!

I pushed for my 4th IGENEX Lyme test; my first three Lyme tests were

negative (and tend to be unreliable, in my opinion, but I was LYME positive

even per the messed up miss-applied rules when compared to the IGENEX test

results; remember, even 1 band indicates you could have something there, don’t

always need 2/5 bands!). I found an out of state Lyme Literate Medical

Doctor (LLMD) and started varying ABX, all oral, I started feeling noticeably

better after the 5th month.

Currently...I have undergone 9 months of oral ABX under the supervision of a

LLMD with 20+ years of exp treating Lyme. He had me on a month of: (excuse the

spelling): Doxy, Ceftan, Azithromycin, Flagyl, Flagyl, Qualaquin & Clindamycin

alternated with Plaquanel & Clarithromycin, Rifampin, Tindamax & Bactrim

and NYSTATIN THROUGHOUT for potential ABX related and other stomach issues.

Little scary to think about what I have been taking the last 9+ months (some

stops here and there, but limited, latest week off when wasn’t sure if

poison ivy rash was from poison ivy [on soccer balls!] or ABX), but I am

feeling pretty darn good now, and back on the ABX! My usual qualification

here; I AM NOT A DOCTOR! Find a good LLMD!

I am better. I am much better than 9 months ago. I am coaching my young

sons’ fall soccer teams again, without the slurring and stumbling I was

doing during spring soccer! I am better on LDN: I tried to stop the LDN

when I was on ABX, in case I was causing more damage with LDN some how, got

worse in just 2days, got back on LDN and felt much better in just 2 days.

Maybe LDN is helping to reduce the inflammation while modulating the immune

system? I would do the LDN, but you have to have the ABX as well (seems

to be lots of combinations of ABX out there depending on your LLMD) to fight

LYME and co-infections! You need a real LLMD! I had an infectious

disease Doc that supposedly knew LYME, ran a bad WB test, only had 1 band

positive, so I was fine, have a nice day, see ya later; he proposed nothing for

me! Find a real LLMD!

I got worse at times even on ABX, the worst, slurring my speech, and

having issues having to think about walking before walking. Before the

ABX, my right arm and leg were going numb, thus my push for an LLMD and IGENEX

WB! LDN helped my fatigue and brain fog, I am convinced, now and throughout!

LDN is ALSO a cornerstone of my therapy. I also haven't had a cold since

I started the drug in October of 2009. My regular seasonal allergies didn’t

show up this year/summer 2010?! My LLMD has talked about getting me off

the LDN some day. And right now I fear this. First, will see if I can get

off the ABX after 10+ months, and see what happens!

Open for more questions and/or corrections BY ANYONE on my last 4

years, but again others out here know more, and probably know better than I.

Thanks!

Brad

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Angelia McCright

Sent: Wednesday, September 15,

2010 3:28 PM

low dose naltrexone

Subject: [low dose naltrexone] Lyme

I noticed a few people posting on

lyme. I was diagnosed 4 years ago with RA and I started LDN in May of

2010. After starting LDN, my symptoms increased and I felt worse so I got

a lyme test and was positive. Next week I am going to see a lyme doctor

to decide what to do, although after 4 years of having this disease, I am wondering

if there is any hope of getting rid of it.....especially since I've used the

antibiotic protocol to treat my RA. I don't know how helpful LDN is for

lyme but I'm hoping its going to help me. I felt good for a couple months

now I'm starting to feel bad again. We'll see. I'm only

taking 1.5 mg because when I tried to increase it, my symptoms got way worse

and I battled nausea with it. If anyone else has had experience of LDN

and lyme, please chime up.

----

Angelia

September 17, 2010

There is no cure for Lyme disease unless you were treated within the first few weeks of contracting it. When you are in remission the spirochetes usually change their shape into the cyst form where they replicate (reproduce). There they wait multiplying until the right moment...stress of illness, moving, accidents, etc.....there the cyst releases the spirochetes. Where ever they travel to and settle is where you will have ill health....it is multi-systemic. Lyme also changes it's shape to other forms to survive. It has the ability to cloak itself in your DNA to hide from your immune. Lyme is a cousin to syphilis, but is more complex than syphilis. It is a stealth pathogen that requires long term therapy, and in many cases patients decide to stay on the antibiotics...to keep from relapsing.

Lyme patients very rarely just have Lyme disease...there are co-infections that have to be ruled out also. In addition to this, our immunes are in a constant dysfunction. Immunes are either hypo humoral (low immune) or hyper humoral (autoimmune) states. The fact that LDN works to modulate the immune, and Lyme affects the immune, there is a cause and effect there. Research needs to be done with LDN and Lyme to say for sure how they affect one another.

LDN is a great adjunct therapy, but it can't replace the antimicrobials that are necessary to reduce the load of infection in the body. As I said, if you were not diagnosed early and treated, there is no cure for Lyme. Don't be discouraged...I am 90% back after declining to a walker and wheelchair. No one would know I have Lyme just by looking at me now or by the activity level I am able to sustain. It is a balancing act for sure...eat right...get rest...take meds...take supplements...don't overdue the activity level for an extended period of time. It is a lifestyle change that I have accepted. It has been a very long journey to wellness.

My advice is get back to your Lyme doctor and discuss your options.

Take care.

TorreyPresidentNational Tick-Borne Disease Advocates

I noticed a few people posting on lyme. I was diagnosed 4 years ago with RA and I started LDN in May of 2010. After starting LDN, my symptoms increased and I felt worse so I got a lyme test and was positive. Next week I am going to see a lyme doctor to decide what to do, although after 4 years of having this disease, I am wondering if there is any hope of getting rid of it.....especially since I've used the antibiotic protocol to treat my RA. I don't know how helpful LDN is for lyme but I'm hoping its going to help me. I felt good for a couple months now I'm starting to feel bad again. We'll see. I'm only taking 1.5 mg because when I tried to increase it, my symptoms got way worse and I battled nausea with it. If anyone else has had experience of LDN and lyme, please chime up.----Angelia

September 17, 2010

Not true I was cured. I went negative igenex. Many treatment. Marshal protocol. Sent from my Verizon Wireless BlackBerryFrom: " Torrey" <klcst@...>Sender: low dose naltrexone Date: Thu, 16 Sep 2010 18:56:06 -0500low dose naltrexone<low dose naltrexone >Subject: [low dose naltrexone] Re:Lyme There is no cure for Lyme disease unless you were treated within the first few weeks of contracting it. When you are in remission the spirochetes usually change their shape into the cyst form where they replicate (reproduce). There they wait multiplying until the right moment...stress of illness, moving, accidents, etc.....there the cyst releases the spirochetes. Where ever they travel to and settle is where you will have ill health....it is multi-systemic. Lyme also changes it's shape to other forms to survive. It has the ability to cloak itself in your DNA to hide from your immune. Lyme is a cousin to syphilis, but is more complex than syphilis. It is a stealth pathogen that requires long term therapy, and in many cases patients decide to stay on the antibiotics...to keep from relapsing. Lyme patients very rarely just have Lyme disease...there are co-infections that have to be ruled out also. In addition to this, our immunes are in a constant dysfunction. Immunes are either hypo humoral (low immune) or hyper humoral (autoimmune) states. The fact that LDN works to modulate the immune, and Lyme affects the immune, there is a cause and effect there. Research needs to be done with LDN and Lyme to say for sure how they affect one another. LDN is a great adjunct therapy, but it can't replace the antimicrobials that are necessary to reduce the load of infection in the body. As I said, if you were not diagnosed early and treated, there is no cure for Lyme. Don't be discouraged...I am 90% back after declining to a walker and wheelchair. No one would know I have Lyme just by looking at me now or by the activity level I am able to sustain. It is a balancing act for sure...eat right...get rest...take meds...take supplements...don't overdue the activity level for an extended period of time. It is a lifestyle change that I have accepted. It has been a very long journey to wellness. My advice is get back to your Lyme doctor and discuss your options. Take care. TorreyPresidentNational Tick-Borne Disease Advocates I noticed a few people posting on lyme. I was diagnosed 4 years ago with RA and I started LDN in May of 2010. After starting LDN, my symptoms increased and I felt worse so I got a lyme test and was positive. Next week I am going to see a lyme doctor to decide what to do, although after 4 years of having this disease, I am wondering if there is any hope of getting rid of it.....especially since I've used the antibiotic protocol to treat my RA. I don't know how helpful LDN is for lyme but I'm hoping its going to help me. I felt good for a couple months now I'm starting to feel bad again. We'll see. I'm only taking 1.5 mg because when I tried to increase it, my symptoms got way worse and I battled nausea with it. If anyone else has had experience of LDN and lyme, please chime up.----Angelia

September 17, 2010

Coyle / Stony Brook

http://www.stonybrookphysicians.com/doctor/COYLE_MD_PATRICIA_405.asp

Re: Re: [low dose naltrexone] Re:Lyme

After reading numerous post on Lyme, I need to be tested once again. I have been

tested twice and my Neuro told me both were negative. But on the second one, 1

of 3 bans came in positive. When I questioned my Doctor he said - it was the

least important of the three and if I had Lymes the other two bans would have

showed - I had Lymes. (If that makes and sense at all). The second test was

ordered by new neuro, which by the way is also the Dr. that put me on LDN.

Does anyone know of a Lyme Literate Doctor in the Long Island, NY area.

Blessings to all,

Sally

December 30, 2010

>

> It has come to my attention that we may be battling long term lyme and my son

probably has it from birth.

>

> It explains a LOT. We have recovered quite a bit, but the lymies, from what I

have read, are different in bahavior from candida, and very difficult to

eradicate. I know, when we are healthy enough, our body will do it...but in the

midst of it...a push in the right direction would be nice.

>

> I see herbal protocals out ther, particularly Buhner, who has several herbs

that are meant to cleanse, help liver, help symptoms such as arthritis, and

chase out the lymies.

>

> Any experiences would be much appreciated. Any tests that you recommend, as we

are going to an MD over an hour away and wont be driving back and forth on a

whim.

+++Hi Anne G,

It doesn't matter whether a disease has different behavior to candida or not,

since Lyme's disease is like any others, which is caused by:

1. Lack of proper nutrition and oxygen.

2. Accumulation of toxins, poisons, and waste.

3. Lowered vitality due to stress, shock, injury, emotional upsets, relationship

or financial worries and concerns, etc.

4. Nutritional status inherited from parents upon conception.

So no other treatments are necessary other than this program, which gives the

body what it needs so it can heal and detoxify itself naturally, including

Lyme's along with any other health issues.

The fact is that bacteria, yeast/candida, etc. cannot be cured by " killing them

off " or " eradicating them " since that isn't possible anyway. They are only cured

by building up the immune system, which is done by:

1) Consuming " proper nutrients " (diet plus supplements),

2) Eliminating toxins and foods that feed candida (they also feed bacteria and

cancer),

3) Eliminating damaging foods, and

4) Eliminating toxins in general.

When the body is healthy enough it will automatically " make " bacteria, candida.

etc. " change back " into the organism it is supposed to be when the body is

healthy.

It's like the manure pile and the flies, with the manure pile representing the

poor condition of the body. You cannot get rid of the manure pile by killing

off the flies. You must clean up the manure pile instead, which means building

up your immune system.

All the best, Bee

December 31, 2010

Thanks Bee, I have heard this before...and I guess I just needed a little

reassurance. What I have been reading about lyme is frightening to say the

least and explains some of the hurdles we have been facing lately. Our poor

little guy has been what they call " air hungry " where he gasps for air, but the

lungs are clear....this is new for us and apparently associated with lyme. His

little body has done so well...no sinus infections or bronchitis like the old

days. He also just can't run and keep up with the other kids. To see a 4yo

with that kind of fatigue...well, you know. I just have to remember where we

came from. A year and a half ago, he wasn't digesting his food at all...and now

he has regular bowel movements that are pain free. He was afraid of the toilet

due to the pain he had associated with it and required regular enemas, now he

just wants company on the potty:) We have come a long long way, and I have to

remember that...and be proud every time he proclaims to someone offering him a

juice box " I am allergic to sugar! " In his outside voice

Slow but sure, Anne G

December 31, 2010

Congrats on your hard work Anne G! Makes me want to cry reading this. I'm proud

of him too. :`)

Nan B.

Moderator

--- " nosleep4mommy " wrote:

>

> Thanks Bee, I have heard this before...and I guess I just needed a little