New here

February 22, 2007

Hi...

I have also just recently started reading this list. I've been working with

rife-type treatments for about a year, having had Lyme disease for over 20

years, with serious disability misdiagnosed as MS. Long, complicated story,

but anyway, feeling much more encouraged lately. Only found Healing Lyme

this past December, gradually starting onto various herbs. Did a year of

cats claw and nutramedix samento, about 2 1/2 years ago -- no dramatic

recovery, so I didn't think it was helping that much and stopped, but in

retrospect, with more recent experiences, I think that it was helping.

Anyway, delighted to have found such a thorough collection of herbal

recommendations, so carefully researched, to go into more thoroughly.

Bottom line, I think that the rife work has helped things not be worse than

they could be, but I've had to go very slowly because of intense reactions,

and have also not experienced grand recuperation. I'm continuing with that

work, along with the herbs.

I love your cocoa recipe! I've been puzzling over alternatives to so many

capsules. Thanks so much for sharing it.

Shemaya

[ ] New here

> Hello, I just joined the group and wanted to make an introduction.

> My husband has lyme disease, we didn't catch it until 2 years after

> the fact when we finally figured out why his joints would swell up

> for seemingly no reason at all. We were immediately turned off by

> the lyme specialists who told us to take antibiotics and we found

> two books: Buhner's and a Lyme/Rife book. We haven't done any of

> the Rife machine stuff, but are fully committed to the herbs in

> Buhner's book, and just worked up to the maximum dosage a week ago.

> Because of expense, we buy most of the herbs except for andrographis

> in powder form from Rain-Tree and 1st Chinese Herbals, and then mix

> them with some Camu-Camu (vitamin C source), Stevia, and unsweetened

> cocoa powder to make a mix that he can scoop out and put in a glass

> of milk, we call it his " magic cocoa mix. " It doesn't taste great,

> but he likes it better than taking all of those pills.

>

> He has a few flare ups since we started on the herbs, but instead of

> lasting 2-3 weeks, they are lasting between a few hours and a few

> days. He is very tire much of the time, but we attribute that to

> fighting off the lyme.

>

> I do not have any lyme symptoms, and we have heard mixed opinions on

> whether or not he can give it to me. But I take astragalus and

> eluthero, along with other immunity boosters and vitamins just in

> case.

>

> I have not read through many past messages, so forgive me If I ask

> repeated questions, but here they are:

> 1)How do you know when you have beaten lyme disease?

> 2)Do decreasing symptoms mean the protocol is working or that his

> body is not fighting as much?

> 3)Has anyone done rife or " zappers " in conjuction with the herbs?

>

> Thank you!

>

> The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now

> available through Amazon and Booksurge Bookstores. Please visit the

> official website at http://www.confrontinglyme.com for more information.

>

> - Join or create groups, clubs, forums & amp; communities.

> Links

>

February 23, 2007

Hi Shemaya,

Welcome to the list.

Glad you found us.

To have this disease for 20 years! I honor your determination to heal

yourself. Glad you feel encouraged, and hope that you will find a

total recovery.

Just to let you know, if you are reading at the group site, on the

left there are links which provide more information.

best,

ellen

February 23, 2007

Hi Ellen,

Thanks for the welcome! I've been picking up lots of great information

reading what everybody has been writing, and from the group site, along with

planet thrive, which I found by reading here. Thank you so much to

everybody for making all this information available.

Yes, it's been long! But got inexplicably better for one span of about six

years, more or less. Which was outstanding both for having some fun and for

knowing that it was possible. This time around, as of the last 3 1/2 years,

it's been all about knees, along with previous issues coming back more

strongly again. But the whole business is a lot more approachable, having

an understanding of what's going on. So here's hoping for herbs that work!

Antibiotics are out of the question, for various reasons, so I am delighted

to find the range of herbs to apply to the situation, tailored so

specifically. I think it'll take another two months or so to get up to the

full dose of the core protocol, but I'm used to trying things that take a

year to determine if they're working or not, so I'm trying to stay connected

to that sense of patience! It would be a real treat if things started

improving noticeably.

Thanks again,

Shemaya

[ ] Re: New here

> Hi Shemaya,

> Welcome to the list.

> Glad you found us.

>

> To have this disease for 20 years! I honor your determination to heal

> yourself. Glad you feel encouraged, and hope that you will find a

> total recovery.

>

> Just to let you know, if you are reading at the group site, on the

> left there are links which provide more information.

>

> best,

> ellen

February 25, 2007

Shemaya,

My problem was in my knee too. (is, too a much lesser extent).

Is your knee problem 'lyme arthritis'? That's what my MD called mine.

Not that labels mean a lot. He said that he couldn't tell if my knee

problem was: permanent damage from the Lyme, or the presence of Lyme,

or a result of my immune system response to Lyme.

I don't believe anything is necessarily permanent. But I have decided

for the moment to live with it, as I don't have pain except for

climbing steps. I'm even thinking of trying to jog again!

Wanted to mention teasel to you. Several on here have mentioned it for

joint pain (among other things I think), in case that is your

situation. When I get ready to try to resolve my situation that is

what I'm going to try first. If you search the archives you can find info.

let us know how you do.

best,

ellen

February 27, 2007

selmanaka,

Thanks for the informative reply: you mentioned cleansers--he is

taking red root, just 3 capsules a day, we didn't find the stuff

listed in the book, so we got it capsulized. Since my husband is

taking large quantities of herbs right now, it does seem he is

having a hard time--fatigue, bright yellow or brown urine, and some

impotence. do you recommend taking the other cleansers you

mentioned with red root, or should he take more red root? Another

question, I've heard many of those substances are chelators and

should not be taken if you have amalgam fillings (he has 6, we are

saving up the money to get them removed)--should he take them

nonetheless? Or should we back down on the core protocol herbs--

unless that would not make the program as effective??? Sorry lots

of questions!

As for me, I am taking 3 410mg astragalus pills/day, plus about

500mg eleuthero. And yes, we have bee pollen--we just sort of take

a spoonfull a day or so.

We also have a grazing/organic dairy, so we drink a lot of raw milk,

which is full of vitamins and minerals. I know this is a

controversal thing, as lyme can be transmitted through milk, but we

have also read that cows can develop antibodies against the lyme and

can cure themselves of it, possibly curing those who drink their

milk?? Who knows. But if anyone has ever tried " hyper-immune milk "

I'd love to hear about it.

Thanks

>

> Hi, welcome to the group!

>

> It seems you're husband and you are doing quite well already!

>

> Thanks for the idea about the cocoa drink. Sounds not that bad at

> all. I read wonderful things about stevia too. Does it taste good?

>

> How much eleuthero and astragalus do you take a day?

>

April 1, 2007

Kathy,

Normal blood work combined with tendonitis , joint pain and muscle

pain in many places may well be polymyalgia rheumatica (PMR), so go

to www.google.com and research that topic.

One of the tell-tale signs of PMR is that it comes on quite suddenly.

A diagnostic is the immediate removal of all pain in response to

small dosages of Prednisone, such as 10 mg per day.

The good news about PMR is that it can be cured in about 1 year with

decreasing doses of Prednisone. Stay on 10 mg of Prednisone for a

couple of months, then go down 1 mg every three weeks. When you are

down to 3 mg, go down 1/2 mg every 3 weeks until you are down to 0 mg.

I would see a rheumatologist first and experiment with Prednisone

under that doctor's guidance. I would only see a neurologist once

tendon, muscle or joint inflammation have been ruled out.

In the meantime, put yourself on an anti inflammatory diet. Start by

avoiding all beef, citrus and processed foods. Eat salmon, rice and

vegetables. Use olive oil.

I have PMR, but was misdiagnosed over 5 years.

Sincerely, Harald

At 01:25 PM 4/1/2007, you wrote:

>Hi, I just joined. not sure if this is the list I need yet. I have

>muscle and tendon pain, maybe ligaments too, not sure. I have seen the

>family Dr and the orthopedist and a nuerologist. I have 2 apts with

>nuerologist this week for nerve tests and I see a rhuematologist next

>week. so far all blood work is normal. The orthoped says i have

>tendonitis in my shoulder, but ive also had it in my elbows, ankles and

>hands. Now my right leg hurts too and my left shoulder is starting

>too. My hands are very painful very often. I am active and have a

>small farm, animals to care for, and alot of gardening. I also drive a

>school bus, so the pains dont help. currently only taking alieve. I

>was doing physical therapy for the shoulder, he said I have impingement

>of the tendons. the PT helped me start using my arm better but didnt

>not resolve the pain. So I get the nerve tests tommorrow , they said

>maybe an MRI after that. nuerologist seemed to think my arms were

>weak.. anyway, not sure where to go, who to ask, worry about whats

>going on. I want to get to work on things and just cant do as much as

>I want to. Thansk for any comments. Kathy SD

>

April 3, 2007

Hi Kathy;

I have SD also.Believe me Minocin works wonders.I had to find out

the hard way that I am Celiac as are many people with chronic

disease.That cleared after 18 months on a no grains diet .Had to cut out

anything " cow " and all food with vitamin D.Basically I became 90

vegetarian and the only meat I coud eat was chicken.Had to cut out all

food with vitamin D also as my 25 to 1.25 ratio was 3 times too high and

was causing osteoporosis.It was tough to change the way I ate byt with

AP I am in remission.Had to use minocin,clindamycin,diflucan and

zithromax but all was well within a year of making changes. Lynne SD

Kathy wrote:

> Hi, I just joined. not sure if this is the list I need yet. I have

> muscle and tendon pain, maybe ligaments too, not sure. I have seen the

> family Dr and the orthopedist and a nuerologist. I have 2 apts with

> nuerologist this week for nerve tests and I see a rhuematologist next

> week. so far all blood work is normal. The orthoped says i have

> tendonitis in my shoulder, but ive also had it in my elbows, ankles and

> hands. Now my right leg hurts too and my left shoulder is starting

> too. My hands are very painful very often. I am active and have a

> small farm, animals to care for, and alot of gardening. I also drive a

> school bus, so the pains dont help. currently only taking alieve. I

> was doing physical therapy for the shoulder, he said I have impingement

> of the tendons. the PT helped me start using my arm better but didnt

> not resolve the pain. So I get the nerve tests tommorrow , they said

> maybe an MRI after that. nuerologist seemed to think my arms were

> weak.. anyway, not sure where to go, who to ask, worry about whats

> going on. I want to get to work on things and just cant do as much as

> I want to. Thansk for any comments. Kathy SD

>

April 12, 2007

Thanks for the welcome and all the info. We just met again today with

the infectious disease specialist and he does not believe that the CMV

is related to the arthritis. Lianna is not on any medication at this

point. She also has elevated liver enzyme and a small amount of fluid

around her liver and everyone seems to be afraid to give her any kind

of med. We are currently trying Borage oil supplements to see if they

make any difference. Has anyone else with PsA experienced liver

involvement? The rheumy said this was uncommon but not unheard of.

Thanks again!

Jo Anne, mom to Lianna(4)PsA

April 17, 2007

Welcome to the group. Where did you move from and where do you live now? Just so

people on here can help you out with some services.

Amy

Donna <flower97_02@...> wrote:

Hello, I just found this group tonight and as my almost 4 yr. old is

speech delayed, thought it might be a good idea to join. I am a mother

to 3 wonderful kids, and it is my middle child who is speech delayed.

We are not sure what caused him to speak so late (didn't start to talk

until almost 3!!)We have recently moved and are getting him re-

evaluated on May 7th to get him speech services again.

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

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Check outnew cars at Autos.

April 17, 2007

- my baby girl is 5.5 mo and was also just diagnosed - ask about

torticollis also - a tilting of the head and favoring one side ( I don't know

much - just learning) - we are seeing a pt for this. Also - ask about helmets -

everyone is telling us to do it. Good luck and God Bless,

April 17, 2007

Hi,

I would definitely start the process sooner than later given your

son's age. Is the first time that the plagio was noticed was at his 9

month visit? Or were you given the " it will round out? " It seems

interesting that there would be nothing until 9 months as the bones

are closer to the shape the head will be as they get older (did I say

that right?). I think you can still see great correction, it just may

take a little longer given your son's age. I would probably pay for

the band upfront and then appeal your insurance (as most deny it the

first go around). Good luck.

9.5 month old son, DOC graduate!

April 17, 2007

One more thing, you can go to CT for a free eval. We were very

pleased with the DOC band. Is PT for torticolis?

April 17, 2007

It's a CranialTech clinic that they are sending us to, so the free eval is good to know about.6mo is when I first noticed it. Well, maybe it was earlier, but it was the whole "it will round itself out" thing. My 2 1/2 yo had a flat spot for a short time and hers did round out so I didn't think anything of it. A 9mo it became more pronounced, but since he had just begun walking, we decided to give it until the next visit. Now it looks pretty bad and he's popping his jaw. The jaw popping is what triggered her to write the script. It's a lot to take in right now, and I'm trying to read up everything I can. I'm calling my insurance (UHC) now and see what I need to do to get this covered. I just hope it's not too late.On Apr 17, 2007, at 12:35 PM, lka_236 wrote:One more thing, you can go to CT for a free eval. We were very pleased with the DOC band. Is PT for torticolis?

April 17, 2007

Welcome ! This is a great group of parents who can answer alot of the questions you have!

At 1 year old you will want to act as fat as possible becuase IF treatment is needed the window for correction closes when the sutures are fused in the skull.

I'm not sure about "popping" in the jaw - but have you been to a cranio-facial specialist? They maybe able to help with the jaw issues.

Does your son have Torticollis? Is that what the PT is for?

If there is a Cranial Technologies near you they can do a free consult to see if your son would benefit from a band - maybe even sooner that 5/4.

HTH!!!

Jen and Luli (16mo)

Left Tort - Right Plagio - Hanger Band Grad - CA

tallulah jayne

http://www.babiesonline.com/babies/j/jens5th/

New here

Hi,

My name is . I just got back from my son's one year appointment

and our ped-doc said he has plagiocephaly and referred us to a PT. I

feel completely lost and have no idea what to expect or where to

start, so here I am.

Micah started walking at 8 months and although we noticed a slight

problem at his 9mo visit, my doctor felt that it would even out now

that he was so much more mobile. He has always been a belly baby, but

prefers to sleep on one side. Anyway, now it's a very noticeable

problem and he;s started popping his jaw.

Anyway, we have an appointment on 5/4 for the measurements and I guess

we go from there.

Thanks for listening,

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April 17, 2007

Harald, I checked out a PMR site which describes it as only affecting adults

over the age of 50. I am looking into this because my daughter (MS since '91

and SD since 2000) is experiencing severe pain, mostly during attempts to move

it, in one of her legs. An MRI, CAT scan and x-rays show no signs of a fracture

or break, although she did fracture the other leg (tibia) when she fell forward

out of her wheel chair. She also has complained of pains in her elbow and upper

arm. She is only 36 years old.

Ellen

Re: rheumatic new here