Re: Question to the Lyme patients

[Guest guest]

Zoehealthy,

I'm on doxycycline hydrate 400 mgs daily IV in a PICC line since Nov 11th.

Improvements are slow and hard to see. It has been extremely hard on my GI. If

you do get tested use IgeneX. http://www.igenex.com. Antibiotics are not the

only route. Don't feel aprehensive getting yourself tested out of hesitation

taking antibiotics.

Good Luck,

-M

[Guest guest]

What else are we going to do for our health ?

Me:

Apr 2000 optic neuritis

Apr 2004 MS - Rebif one year Copaxone 1 year

Aug 2006 MS, switched from std neurologists, took LDN one year, intravenous EAP

one year

March 2008 : Lyme Disease + coinfections, Over two years took a bushel basket

(for real) of oral abx

2010 : neuroborreliosis

Dec 2011 PICC line installed and started IV abx

Get a copy of Burrasczno's " Putting Lyme Behind You " from the California Lyme

Disease Association.

The longer we have been sick, the less reliable the tests are.

>

> I have noticed quite a number of group members have found out they have Lyme

or Lyme-induced MS. What I am wondering is what is the treatment you are doing?

I assume it is long term and alternating of antibiotics? Also what is the

outcome? Are you getting better from the Lyme treatment with antibiotics or

other Lyme treatment?

>

> The reason I ask is that I am not sure it is worth it for me to spend the

money on specialized Lyme testing given that I don't think I would want to take

the antibiotic treatment regimen.

>

> Thanks for any input.

>

[Guest guest]

" Putting Lyme Behind You " DVD

http://puttinglymebehindyou.wordpress.com/category/putting-lyme-behind-you-dvds/

pdf of Burrascano's Advanced Topics in Lyme Disease October, 2008

http://www.lymenet.org/BurrGuide200810.pdf

> >

> > I have noticed quite a number of group members have found out they have Lyme

or Lyme-induced MS. What I am wondering is what is the treatment you are doing?

I assume it is long term and alternating of antibiotics? Also what is the

outcome? Are you getting better from the Lyme treatment with antibiotics or

other Lyme treatment?

> >

> > The reason I ask is that I am not sure it is worth it for me to spend the

money on specialized Lyme testing given that I don't think I would want to take

the antibiotic treatment regimen.

> >

> > Thanks for any input.

> >

>

[Guest guest]

I have posted A LOT of info / web links for videos here on MSCured. Use the

search function to find / review the info.

I am so puny that I have scared priests away ! (real story)

USED to be an average healthy 5' 8 " 165lb male. WAS quite outdoorsy. In 2001

was healthy enough to hike for 2 months in Himalayas. In 2004, started Rebif.

STRONGLY feel that the Rebif is what really flushed me down the toilet.

May 2006 started disability retirement.

2008, hersheimer reactions to the 200mg doxycycling twice per day, which

confirmation of my Lyme Disease diagnosis. DRASTICALLY increased my number /

variety of antibiotics.

Had ONE (1) really good day where I walked normally. Even got ino my car and

drove without my right foot ankle foot orthotic. Went from weighing 165 lbs and

useing one (1) cane to weighing 140 lbs and useing two (2) canes.

Dec 2011 had my PICC line installed. Started 2g Claforan twice per day (m-f).

Have been useing a 4 wheel walker to move through my 12000 sq foot house. Use a

stair lift to go down stairs to use my washer and dryer. Downstairs use two

canes to move about.

Have had three (3) LLMDs. My impression is that there are two types of LLMDs.

Established and New. The established LLMDs will use only oral abx. The new

LLMDs will move to PICC lines more quickly. STRONGLY feel that if I had started

my PICC line in 2008 w/ my LLMD #1, I'd be much healthier now.

In the documentary " Under Our Skin " , the professional baseball player related

that his Lyme Doc said the PICC line was so important that if it was a person

from the docs family, he would hold the person down as the PICC line was

inserted.

I sleep A LOT. Feel free to send me a note to wake me up.

>

> I have noticed quite a number of group members have found out they have Lyme

or Lyme-induced MS. What I am wondering is what is the treatment you are doing?

I assume it is long term and alternating of antibiotics? Also what is the

outcome? Are you getting better from the Lyme treatment with antibiotics or

other Lyme treatment?

>

> The reason I ask is that I am not sure it is worth it for me to spend the

money on specialized Lyme testing given that I don't think I would want to take

the antibiotic treatment regimen.

>

> Thanks for any input.

>

[Guest guest]

Zoe,

Finding a doc with experience recognizing Lyme disease in patients, getting

tested for Lyme disease through a reputable lab (IgeneX), and choosing treatment

options if the tests are positive for Lyme disease (and/or

co-infections)...those are all separate events. Some people diagnosed with Lyme

(and/or co-infections) choose antibiotics, but others do not. And some choose a

combination of therapies.

What is the root cause of your MS symptoms? Lyme?

KC

>

> I have noticed quite a number of group members have found out they have Lyme

or Lyme-induced MS. What I am wondering is what is the treatment you are doing?

I assume it is long term and alternating of antibiotics? Also what is the

outcome? Are you getting better from the Lyme treatment with antibiotics or

other Lyme treatment?

>

> The reason I ask is that I am not sure it is worth it for me to spend the

money on specialized Lyme testing given that I don't think I would want to take

the antibiotic treatment regimen.

>

> Thanks for any input.

>

[Guest guest]

I am one. And believe me, it is not something you you want to ignore long term.

Have you seen the documentary " Under Our Skin " ? Not that Lyme would affect all

of us the way it did in that film, but it does show how bad it CAN be if left

untreated for some people. I have elected to aggressivly treat it as I believe

it was one major factor in my MS development/progression and could be a

hindrance to my getting well. I fact, that's why I got tested - I had plateaued

while following my MS regimen, only getting better to a poing. Since going on

treatment, I've also had a few 'golden' days where I got my mind back. I could

think clearly, like I did 20 years ago. So for me, I am not going to give up

until I don't see ANY benefit from the treatments.

There are alternative treatments that work just as well as antibiotics. I

fortunately am working with a Lyme doc that is an MD, well versed on Lyme and

keeping current with all the latest developments, but is also open to working

with me on any alternative treatment I lean towards. First, it does matter

which antibiotic, and for how long you go on them. I took Tindamax for several

weeks - not long enough to to eliminate the pathogen, that can take years, but,

it got my viral load down significantly. It is important however to get on the

correct antibiotics so that it kills multiple forms of the Lyme (spirochete,

cyst, biofilm, etc). I also went on the Salt/C diet for a couple of weeks, and

it did the same thing, lowered by viral load further. Third, I tried a Rife

machine - what is known as the 'Doug Coil'. I found it too helps to reduce the

viral load. I was lucky enough to have my Rife machine when I went through a

new infection, which produced a very intense herx. Unfortunately, ALL of them

have significant drawbacks.

For antibiotics, after several weeks, like you, I just didn't like what they

were doing to my body. They strain your liver, kidneys, kill your beneficial

gut bacteria, and ultimately lower your immunities - which is NOT beneficial

when you are fighting a nasty pathogen such as Lyme & Co-infections.

So, on to the Salt/C regimen. That seemed to also work. And, with the high

salt diet (ONLY high quality Sea Salt and NO table salt, AT ALL! - that means NO

processed foods), my body actually felt more 'hydrated'. My lips, that over the

years lost thier suppleness, gained that back within a week. But, evern with

Sea Salt, there is the high sodium issue. I only did it for a couple weeks,

just to see if it did anything, and it did.

Next, following multiple Lyme groups, the Rife group seemed to have the highest

'kill' compared to the other groups. So, I followed one of the Lyme/Rife

groups (Lyme_and_Rife) for a couple of months and did a lot of research on the

best Rife machine/modality - as there are a lot of different ones. All fairly

expensive, some REALLY expensive. Eventually I did buy a Doug Coil that seems

to give me fairly good results - when I hit the correct frequency. And therein

lies the trick on all of the Rife machines - hitting the correct frequency can

make the difference between getting a good 'kill', and getting nothing (or,

maybe a headache).

So, a question by someone who hasn't experienced a good Lyme protocal - how do I

KNOW that these things were actually killing the Lyme? Luckily, I started with

the antibiotics, which produced a VERY strong and distinct 'herx' that was

on-going for several weeks (you can google that & Lyme for some very good

explanations of the herxheimer effect). The antibiotics were pulsed, so the

herx was off-and-on depending on where I was in my treatment. And, since I got

a good idea of what a herx felt like while on the antibiotics, when I tried my

other treatments I recognized the herx without any doubt. It was not something

subtle - it was at some points almost unbearable.

Bottom line, all of these treatments have produced good solid herx's that are

tending to decrease in intensity as my treatments continue. With antibiotics &

possibly the Salt/C, I realize there'd be some question of possible resistance.

But with the coil, while Lyme can mutate to 'avoid' some frequencies, there is

no actual resistance and it is almost impossible for it to hide. Another reason

why I chose to go in that direction. I've also heard a lot of people say

they've had good results with a GB4000 Rife machine. The Doug coil is based

upon an electromagnetic frequencey, the GB4000 is based upon electrical

stimulation through direct contract (skin). So, in my mind, the high magnetic

field is the only drawback to the Doug coil. I don't know of ANY drawbacks to

the GB4000, except maybe cost.

Everybody's plan for Lyme is different - depends on what you're comfortable

with. For me, I'm probably going to try the Lyme/C again shortly (my doc said

she wanted to monitor my sodium levels at that time) while I continue with the

Rife. Presently I Rife every week (and now every 2-3 days) trying different

frequencies for various pathogens as there is essintially no limit as to what

the Rife can treat. I'm always looking for that herx top tell me how my session

went. Sometimes they come within hours, sometimes in a few days. But they

usually last several days depending on what I do to detox - which is very

important for getting well. When my herx's start settling down, I intend to go

back on antibiotics and see if I can't knock that nasty bug down the rest of the

way. But in this way, I will have only been on antibiotics for a couple of

months - not years as some are doing.

You can spend months researching all these areas - there is so much to learn.

As for the cost for testing - if you have insurance the test should be less than

$100. But it is important that you take the proper test. There are new ones

being developed, but I had the Western Blot that only came back with a single

Band. And that has to be interpreted by a Lyme Doc - a non-Lyme Doc will not

think you have Lyme when you might. They will typically follow the standards

laid down by the CDC. Much politics there. In my case, I think it is obvous

from the herx's that I was killing something, and I believe at a minimum it was

Lyme.

In the end, I do feel like I am getting better, and the MS is at least steady at

this point. Only time will tell.

Hope this helps and good luck!

>

> I have noticed quite a number of group members have found out they have Lyme

or Lyme-induced MS. What I am wondering is what is the treatment you are doing?

I assume it is long term and alternating of antibiotics? Also what is the

outcome? Are you getting better from the Lyme treatment with antibiotics or

other Lyme treatment?

>

> The reason I ask is that I am not sure it is worth it for me to spend the

money on specialized Lyme testing given that I don't think I would want to take

the antibiotic treatment regimen.

>

> Thanks for any input.

>

[Guest guest]

You should check out the archive and search for Lyme Disease posts. There were

many conversations regarding Lyme. Your information is good along with a lot of

the other information that other members have submitted. Personally, I feel that

anyone that has MS ought to get tested for Lyme disease through IgeneX

regardless of whether they're going to treat it or not. Once you know for sure

whether you're infected is when you should make the decision whether you're

going to treat it

-M

[Guest guest]

Yesterday had an appt w/ my LLMD. There was another person in the waiting room

that had been from doctor to doctor to doctor.... He had been diagnosed with

fibromylagia. Got worse. Was then diagnosed with Parkinson's, then went to

using a wheel chair. Finally, it was HIM, the PATIENT, that pursued his Lyme

dx. He is now walking, albeit poorly, but walking without a cane.

I have TWO MS diagnoses. Had two neurologists. Now I am up to LLMD #3.

>

> You should check out the archive and search for Lyme Disease posts. There

were many conversations regarding Lyme. Your information is good along with a

lot of the other information that other members have submitted. Personally, I

feel that anyone that has MS ought to get tested for Lyme disease through IgeneX

regardless of whether they're going to treat it or not. Once you know for sure

whether you're infected is when you should make the decision whether you're

going to treat it

>

> -M

>