Newbie Needs Guidance

[Guest guest]

Dear Pam,

<<I'm lost here and truly, wandering in the darkness.>>

So sorry to hear of your son's diagnosis / condition, but - given that as a

reality - am SO glad for you & him that you found this list. You are no

longer wandering in the darkness! Welcome to the lyme family...

Let me first state that I am not a doc or nurse - just a " veteran mom " who

has done a TON of reasearch & have used the " shot-gun approach " to treating

these insiduous diseases - everything from medical intuitive / " healer " to

castor oil packs from Edgar Cayce readings & everything inbetween... I have

a 16-yr-old daughter with lyme/babesia/ehrylichia. Has your son been tested

for co-infections? Her lyme was not really improving (1,000 mg biaxin + 200

mg doxy per day for a few months) until she began treating with clindamycin

for the babesia...

Have read & been told that the " big guns " in NE sector believe that lyme will

not improve without babesia being addressed (assuming co-infection(s) exist).

As I've read & been told that some folks had VERY severe reactions to mepron

& our pharmacist looked it up & said she would never personally take it, we

opted for the clindamycin route...

Another conventional things that have helped her immensely are the

introduction of flagyl into her med regimen. (Have links to much info if you

would like it.)

On the " non-conventional " side (most beneficial, I believe & she feels -

being a " scientific " type, this is meaningful...) - she has derived the most

benefit from acupuncture 1 time per week for several weeks (helps to

rebalance nerve function / energy flow in body), Qi-gong machine (on loan

from a holistic practitioner - restored her sleep to NORMAL!), 2 chiropractic

adjustments per week, osteopathic adjustments as necessary, EPA (fish oil -

for heart & nerves), CO-Q-10 to assist in cellular function, heart & nerves,

super high-potency vit B, extra pantothetic acid, flax oil (does not taste

particularly good, but has been proven to aid in delivery of blood /

nutrients to brain), olive leaf extract (natural anti-biotic), super potency

anti-oxidants (when I read of Dr. Shoemaker's new protocol on a med that

bonds to neurotoxins to help eliminate them from body - I began thinking /

searching for natural means to do the same...), slippery elm to aid in

bonding to / eliminating neurotoxins, natural candida regimen (super garlic

(also a potent anti-biotic), tablets derived from castor beans - followed by

a fibre shake (to wash dead candida out of digestive tract); lacto (something

- can never remember the rest of that words) - probiotic - taken 2 hrs before

flagyl, as it is needed in lower intestines to help metabolize flagyl & aid

body in excreting (rather than reabsorbing toxins emitted from dying / dead

spirochetes), wet cell battery (also called galvonic battery - from Edgar

Cayce readings - have links, if interested) - the purpose of this " gadget " is

to use a gold chloride solution which is fed into nerves through metal disc

connections - have read in a few different places that gold chloride is

essential for those with nerve disorders / problems, as it actually helps to

rebuild damaged nerves (carrots have lots of gold chloride - as does

chammomile / chapparel flower essences).

The Qi-gong machine has had a very dramatic effect for my daughter. Have a

site link from the co that makes these machines & it explains the principle -

they liken it to an earthquake or other " natural cleansing " in nature. They

have measured the frequency output of Chinese Qi-Gong Masters (very ancient

healing art in China) & designed a machine to duplicate those healing

frequencies... Has a pulsating effect, much like the purring of a cat (doc

said frequency is similar to that of a cat purring). As the chetes like to

" settle " into certain areas in different individuals, we felt this a

wonderful idea - to sort of stir up the bugs - and it well did! (BTW - no

interest in any of these machines / nutritional products, etc. - just a

sincere desire to share with you what worked for us...)

My daughter has gone from NO school (not even home schooling) 1st semester

(to completely remove ANY stress from her life, which seems to be very

important as well as meds / supplements, etc.) to being at school nearly all

day & working a part-time job 6 days a week! WHen she comes home, she is

really tired, but refreshed after a good meal & a good night sleep (thanks to

Qi-gong!). (If interested in qi-gong, but don't want to invest in machine,

I'll be glad to try to help you find a practitioner who has one and/or groups

learning this healing technique where your son can receive healings at low or

no cost... Just say the word. IMO, this is a " win-win " situation, as it

cannot hurt (from what I've seen on TV, Qi-gong practitioners do not even

touch you - just hold hands out towards you).

Sure hope this info helps - we'll be sending healing thoughts & prayers to

you & son!

Blessings & velcro hugs,

(Chicago)

PS - Forgot to mention that many researchers / docs believe that when lyme

organism encounters antibiotics in body, it " mutates " into a single-cell cyst

form, which is completely resistant to " regular " antibiotics, as it is

cell-wall deficient. This is why they believe / rx the flagyl or tinadazole

(similar, but must be compounded in US, as it is " close to " flagyl, but with

less side effects - so I've read & been told).

Feel free to IM or email anytime - will be more than glad to do all I can to

help!

[Guest guest]

Hi Pam,

Welcome to the list. I'm so sorry for your son. My daughter suffered for

years, although not to the extent of your poor son, and is now in

remission. I know how frustrated you must be....the lack of adequate

treatment for Lyme Disease in this country is a national disgrace.

What did your LLMD have to say about the paralysis? Did he feel that it

was due to Lyme, or something else? Sounds like you need a LL

Neurologist...Bb shows up in the spinal fluid in less than 20% of those

infected (I have LD and mine was negative), according to Dr. B. Did

they test the spinal fluid for other diseases? Hopefully someone on the

list knows of a LL Neuro or other LLMD that can help...

Take Care,

Joan LI NY

[Guest guest]

WELCOME PAM..... ua and ur son were screwed by the steere bunch who say 28

days not cured not lyme....while this is no comfort now...steere is under

investigation and the state of mass. is looking for stories like

urs......which iv was ur son on.....rocephin? maybe clarifon would help him

more......have u looked into bicilian la shots ....i had goo succes on them

for a while it is an intramuscular shor given in the butt.....my wife gave

them to me not hard to do.....i wish i could be of more help but i am

suffering greatly lately .....not my normal self....what a crappy disease we

share....changes of season and weather kill me ....i am from NJ this could

also be part of ur sons problem....our ex moderator is going thru the same

thing as well as another young man we have online.....scott.....ur son may

want to share some of his thoughts with scott...as they are the same

age....they may well be able to relate a little better......we are here to

mhelp all we can this group is like family ...we are here for support and

education.......i wil keep ur son in my prayers.....Reid

[Guest guest]

pam....welcome to the world of lyme....it seems u have learned fast.....not

only do we feel like garbage we have to fight for everthing we get......i to

went thru 3 years of misdiagnoses.....i did not have a bullseye....11 years

ago " no bullseye its not lyme " well we all now know the answer to that

one......thanks to it i had to retire 4 years ago at the age of 38.....always

wanted to be retired by 40 but not this way.....i now sturggle for

teverything i get.....we must be politcally active.....while we have no

energy......this disease can destroy whole families......my 8 yo also has

lyme...luckily she had a perfect bullseye and i knew what i was looking

at.....clled my llmd ( who is more of a friend than just a doc) he rx'ed abx

rite away....she has a bad day here and there but is doing well

overall.....once again welcome to our family

Reid

[Guest guest]

I really appreciate the wisdom and advice of the experienced members of this

group. I am taking LDN for fibromyalgia and CFS but the big issue is that I am

unable to tolerate any exposure to viruses. From Sept to May I have almost been

a recluse for the past 2 winters, as any time I am out I will " catch " something.

My doctor is wonderful and we have tried other immune modulating methods with no

success, so LDN is the next try at improving the immune system.

I started LDN 2 weeks ago, 4.5mg (because that's how the dr ordered it). The

first two days were the best I've had in ages, but on Day Three I was sluggish,

depressed, very fatigued. I started reading everything I could find and realized

many people need to start much slower. So I waited a few days, and have been on

1.5 mg for 11 days now.

The huge improvement: mental clarity. I love it! Also, I'm not near as sluggish

in the mornings. I wake ready to face the day.

The downside: Increasing headache/sinus pressure (has been getting a little

worse every day for the past 7 days). Also, over the past 7 days, an increasing

muscle fatigue: that feeling each arm weighs 500 pounds.

I have a tendency to be chemically sensitive, and I've been doing the things I

usually do to kick my liver into gear, but it is not improving these symptoms

(altho they might be worse if I wasn't trying to detox!)

My analysis of these results is that I am getting some good results from the

LDN, (something good is going on!!!) but since the side effects are getting a

bit worse each day, I am guessing I should lower the dose for a bit, and then

increase when the side effects subside?

Any advice would be appreciated!!

Thanks,

Pam