Re: 15yo son-no antibiotics but on Protocol for 5 weeks need advice/encouragement?

[Guest guest]

I personally would get him immediately on antibiotics. Since this is an acute

case and hopefully still in the early stages, you have a chance of preventing it

becoming chronic. If I'm remembering correctly, even Buhner believes that acute

infections should be treated with antibiotics--Lyme and its many co-infections

are horrid--I think it is great that he is on the Buhner's at full dose--keep

him on that--but get him to an LLMD (Lyme-literate md) asap to get the proper

abx treatment (both in dosage and duration)--you can continue on both therapies.

I have a 13 yo who unfortunately is now chronic--didn't get the abx that she

needed nor did I know of Buhner's back then--been two + years now of this

nightmare--I pray that no one else has to go through this especially a

child.......

(We homeschool too, btw!)

Mira

[ ] 15yo son-no antibiotics but on Protocol for 5 weeks

need advice/encouragement?

I am hoping you can advise us further. I removed a tick from my son's back on

8/24. A few days later he complained of a painful lymph node on his back

shoulder. The node was a shooter marble size and rock hard. The bite area looked

like a wasp/bee sting--not a bull's eye type rash. I rubbed EO on the lymph node

and bit area, though my son said the bite area did not bother him in the least.

A few days later the lymph node on the opposite shoulder became enlarged. My son

then complained of a migraine type headache and then chronic fatigue set in.

this all took place in the first 10 days of removal. (btw- the tic was a nymph &

not engorged-and no I did not save it) I took him to our naturopath and she did

magnetic/electronic testing of some sort on him and said that he had lyme

disease and it was a level 3 out of 10 (10 the worst).

We then had to make the decision how to approach this. He had a western blot

test run at 4 weeks after the removal of the tick and he was negative. I ordered

Haling Lyme & started the protocol 5 weeks ago. The lymph nodes returned to

normal size within a couple of weeks. He still suffers terribly from chronic

fatigue. We home school, so on 'bad' days he sleeps all day. We have about 3

days a week (sometimes more) where he cannot get out of bed. He does not want to

eat, just sleep.

On his 'good' days, he seems to be waling around in a daze. This is not normal

for him. Some may say this is normal teenage behavior, but this is very out of

the norm for our son. We chose not to do antibiotics as we felt we found the

right herbs and jumped right on it aggressively and have remained consistent.

Our son has only had an occasional day here and there with muscle aches or

arthritic symptoms. As I type this he is on day 3 of being bed-ridden. (complete

sleep. Only up maybe 1 hour total per day)

He is taking all Core Protocol herbs of the suggested brands mentioned in the

book. We worked our way up to max dosage this week and have been at max dosage

for 5 days. (Astragulus, Cat's Claw, Resveratrol, Andrographis,) He is also

taking:

Sarsaparilla 425mg 4 caps 4x a day

Eleuthero (HerbPham) 1 tsp 3x a day (been on this 8 days)

Red Root (Eclectic Institute)- 30 drops 4x a day

BioSil-10 drops morning

Vit C 4000mg a day

Raw D3 2000 a day, Raw B-Complex one a day, Raw Multi, Probiotics (2x a day),

Digestive enzymes ( all garden of Life)

He eats for the most part an all organic, low sugar, some dairy (raw),

meats/eggs all organic free range. No processed foods, no sodas, no caffeine. He

has eaten this way for years.

Should we be doing antibiotics in conjunction? Am I missing an herb? We are very

concerned and would appreciate any advice. Our son is missing days that have now

added up to weeks in his studies. It has now been 8.5 weeks since I removed the

tick. Thank you again in advance for your help.

[Guest guest]

>

> We then had to make the decision how to approach this. He had a western blot

test run at 4 weeks after the removal of the tick and he was negative.

I don't believe anything of these 'magnetic testing', bio-resonance etc. It is

scientific bogus, but obviously sometimes the practitioner can guess that

someone has lyme from all the symptoms. You either have Borrelia or you haven't.

What is 3 of out 10, 30% chance that your son has Borrelia infection ??

I have the impression that most of these alternative practitioners using

bioresonance etc. detect Lyme Disease in almost everyone, and strongly advise

expensive treatments right away...

It is pretty normal for a Western blot to be negative 4 weeks after a tick byte

(even if there was Borrelia infection), because a full immune response takes 4-6

weeks. Some lyme tests can detect Borrelia within about a week after infection,

but not this test. I would suggest trying a good Western blot again from a good

lab like IgeneX, and maybe test for coinfections.

Another note: if the tick was NOT engorged I think it is unlikely that your son

got Borrelia infection from this one, because it requires the tick to be

engorged for a least 15 minutes or so (and even after 8-12 hours engorgement the

risk of getting Lyme is still relatively low). Some coinfections can be

transferred quickly though, and maybe he was infected through another byt that

wasn't noticed.

[Guest guest]

>

> Should we be doing antibiotics in conjunction?

P.S.: you should know first what you are dealing with, and not rely on this

'magnetic testing' for treatment. Maybe it is a coinfection (or quite something

else) and not Borrelia/Lyme. Some coinfections require other treatments.

Keep in mind that when you use antibiotics, the standard serologic tests like

and Western Blot are no longer reliable until at least 6-8 weeks after you

stop using ABX. With ABX the tests can come up negative even if there is

infection.

[Guest guest]

After speaking to our doctor today on the phone (we see an alternative doctor

who is an MD) and explaining what has been going on, he said he wants our son to

go on 30 days of Doxycycline 100 mg (I will know how many times a day when I

pick it up in a little while) alongside the Buhner Protocol. At the end of the

30 days I am to call again. At that time, we will discuss retesting him through

IGeneX.

Oh and someone asked about the tick being engorged? Apparently (according to all

of the other members of our family who saw it) it " was " engorged. I guess I was

wrong. & thank you everyone for your feedback thus far.

[Guest guest]

Hi - Western blot tests are not always positive, and often not right away.

Also, it helps to get tested by a really good lab, like IGeneX (www.IGeneX.com).

Still, your son is totally symptomatic. Nothing wrong with the herbs, but it's

best, I think, to knock out it with antibiotics in the beginning.

www.lymenet.org/flashdiscussion/seekingadoctor can get you Lyme-literate doctor

referrals in your area. I wouldn't wait. You have a limited window of time to

try to treat an initial exposure. If the doctor's office can't get you in right

away, then find one that can start him on antibiotics, because the longer you

wait, the more chance this goes chronic.

Also, lymenet is a good place to ask questions, in the Medical Questions

section. You can make a post there and ask questions of experienced Lyme

patients. I suggest asking about the swollen lymph nodes, whether an initial

Lyme infection can present as such or whether that can be a sign of the

co-infection Bartonella, which you can also test for, although an initial test

may also not show positive. Keep in mind that lymenet does not specialize in any

one treatment, so some will have done Buhner herbs and many will not have.

I suggest you read up on the other common co-infections, babesia and ehrlichia,

to rule out that he's showing signs of them. Otherwise, go ahead and test for

them too.

Re chronic fatigue, they're doing a lot of research on it right now - it's the

hottest area of research. It may be coming in as a retrovirus that also gets

transmitted by the tick.

In the meantime, study up on all of this, since there's a lot to do when we get

hit with this. All the best - Robin

[ ] 15yo son-no antibiotics but on Protocol for 5 weeks

need advice/encouragement?

I am hoping you can advise us further. I removed a tick from my son's back on

8/24. A few days later he complained of a painful lymph node on his back

shoulder. The node was a shooter marble size and rock hard. The bite area looked

like a wasp/bee sting--not a bull's eye type rash. I rubbed EO on the lymph node

and bit area, though my son said the bite area did not bother him in the least.

A few days later the lymph node on the opposite shoulder became enlarged. My son

then complained of a migraine type headache and then chronic fatigue set in.

this all took place in the first 10 days of removal. (btw- the tic was a nymph &

not engorged-and no I did not save it) I took him to our naturopath and she did

magnetic/electronic testing of some sort on him and said that he had lyme

disease and it was a level 3 out of 10 (10 the worst).

We then had to make the decision how to approach this. He had a western blot

test run at 4 weeks after the removal of the tick and he was negative. I ordered

Haling Lyme & started the protocol 5 weeks ago. The lymph nodes returned to

normal size within a couple of weeks. He still suffers terribly from chronic

fatigue. We home school, so on 'bad' days he sleeps all day. We have about 3

days a week (sometimes more) where he cannot get out of bed. He does not want to

eat, just sleep.

On his 'good' days, he seems to be waling around in a daze. This is not normal

for him. Some may say this is normal teenage behavior, but this is very out of

the norm for our son. We chose not to do antibiotics as we felt we found the

right herbs and jumped right on it aggressively and have remained consistent.

Our son has only had an occasional day here and there with muscle aches or

arthritic symptoms. As I type this he is on day 3 of being bed-ridden.

(complete sleep. Only up maybe 1 hour total per day)

He is taking all Core Protocol herbs of the suggested brands mentioned in the

book. We worked our way up to max dosage this week and have been at max dosage

for 5 days. (Astragulus, Cat's Claw, Resveratrol, Andrographis,) He is also

taking:

Sarsaparilla 425mg 4 caps 4x a day

Eleuthero (HerbPham) 1 tsp 3x a day (been on this 8 days)

Red Root (Eclectic Institute)- 30 drops 4x a day

BioSil-10 drops morning

Vit C 4000mg a day

Raw D3 2000 a day, Raw B-Complex one a day, Raw Multi, Probiotics (2x a day),

Digestive enzymes ( all garden of Life)

He eats for the most part an all organic, low sugar, some dairy (raw),

meats/eggs all organic free range. No processed foods, no sodas, no caffeine. He

has eaten this way for years.

Should we be doing antibiotics in conjunction? Am I missing an herb? We are very

concerned and would appreciate any advice. Our son is missing days that have now

added up to weeks in his studies. It has now been 8.5 weeks since I removed the

tick. Thank you again in advance for your help.

[Guest guest]

I'm no lover of antibiotics - they are grossly overused nowadays. However,

IMO this is a clear-cut case where they should be used immediately and

aggressively. I suspect that even Buhner might agree.

It's only been 8 weeks. If I could turn my own clock back to 8 weeks after

infection, I'd be pounding doxycycline like there's no tomorrow. When you

weigh the risk of a couple months worth of doxy against the risk of ending

up like one of us (on this list), it's an easy choice.

A negative western blot shouldn't be given too much weight. it can take 6 or

more weeks for the WB to turn positive, and his was done at 4. Also, if it

was from any lab other than IGenex, I think it's suspect in any case -

especially if it's from a lab that merely reports a simple

" negative/positive " rather than which specific WB bands, if any, were

positive. In any case, test results are secondary to the facts that you

know your son was bitten, and that he developed highly suggestive TBD-like

symptoms soon afterward.

Don't delay - find an LLMD or an informed GP right away so he can start

treatment ASAP. Every day of delay allows the pathogens to multiply and

disseminate further, causing more damage and becoming harder to kill. I'm

not saying this to be morbid or cruel, but to underline the need for

immediate action. Time is of the essence.

Additional suggestions:

1. Diet is absolutely key in controlling/minimizing symptoms. This is

your second most powerful tool. He should avoid sugar for certain, and

probably gluten and casein (milk protein). He may become sensitive to

other foods, which you will discover by trial and error. Do not

underestimate the power of diet: you may find that eliminating certain foods

will make a huge difference in how he feels. I hope it does!

2. He may become sensitive to mold. I don't mean in the sense of

having the sniffles or coughing, but in the sense that exposure has severe

debilitating systemic effects including nausea, malaise, fatigue,

arrhythmia, tachycardia, anxiety, depression, etc. Some species of mold

have potent neurotoxins on their spores. Most healthy people are able to

eliminate these toxins before they build up to harmful levels, but

immune-compromised people, such as those infected with Lyme, are often

unable to do so. Mold in buildings is quite common, especially in humid

areas. If you have had roof leaks or water intrusion, there's a good chance

there is mold in your home. Also, if you live in a humid area and do not

run an AC or dehumidifier to keep the relative humidity below 60%, mold can

grow just about anywhere.

Hope this helps,

Jeff

From:

[mailto: ] On Behalf Of

skrobison@...

Sent: Friday, October 22, 2010 8:30 AM

Subject: [ ] 15yo son-no antibiotics but on Protocol for 5

weeks need advice/encouragement?

I am hoping you can advise us further. I removed a tick from my son's back

on 8/24. A few days later he complained of a painful lymph node on his back

shoulder. The node was a shooter marble size and rock hard. The bite area

looked like a wasp/bee sting--not a bull's eye type rash. I rubbed EO on the

lymph node and bit area, though my son said the bite area did not bother him

in the least. A few days later the lymph node on the opposite shoulder

became enlarged. My son then complained of a migraine type headache and then

chronic fatigue set in. this all took place in the first 10 days of removal.

(btw- the tic was a nymph & not engorged-and no I did not save it) I took

him to our naturopath and she did magnetic/electronic testing of some sort

on him and said that he had lyme disease and it was a level 3 out of 10 (10

the worst).

We then had to make the decision how to approach this. He had a western blot

test run at 4 weeks after the removal of the tick and he was negative. I

ordered Haling Lyme & started the protocol 5 weeks ago. The lymph nodes

returned to normal size within a couple of weeks. He still suffers terribly

from chronic fatigue. We home school, so on 'bad' days he sleeps all day. We

have about 3 days a week (sometimes more) where he cannot get out of bed. He

does not want to eat, just sleep.

On his 'good' days, he seems to be waling around in a daze. This is not

normal for him. Some may say this is normal teenage behavior, but this is

very out of the norm for our son. We chose not to do antibiotics as we felt

we found the right herbs and jumped right on it aggressively and have

remained consistent. Our son has only had an occasional day here and there

with muscle aches or arthritic symptoms. As I type this he is on day 3 of

being bed-ridden. (complete sleep. Only up maybe 1 hour total per day)

He is taking all Core Protocol herbs of the suggested brands mentioned in

the book. We worked our way up to max dosage this week and have been at max

dosage for 5 days. (Astragulus, Cat's Claw, Resveratrol, Andrographis,) He

is also taking:

Sarsaparilla 425mg 4 caps 4x a day

Eleuthero (HerbPham) 1 tsp 3x a day (been on this 8 days)

Red Root (Eclectic Institute)- 30 drops 4x a day

BioSil-10 drops morning

Vit C 4000mg a day

Raw D3 2000 a day, Raw B-Complex one a day, Raw Multi, Probiotics (2x a

day), Digestive enzymes ( all garden of Life)

He eats for the most part an all organic, low sugar, some dairy (raw),

meats/eggs all organic free range. No processed foods, no sodas, no

caffeine. He has eaten this way for years.

Should we be doing antibiotics in conjunction? Am I missing an herb? We are

very concerned and would appreciate any advice. Our son is missing days that

have now added up to weeks in his studies. It has now been 8.5 weeks since I

removed the tick. Thank you again in advance for your help.

[Guest guest]

>

> Oh and someone asked about the tick being engorged? Apparently (according to

all of the other members of our family who saw it) it " was " engorged. I guess I

was wrong. & thank you everyone for your feedback thus far.

OK, so I'm not the only one who is confused about this

I think it is very difficult to see, especially with nymphs.

[Guest guest]

knot_weed,

Sorry for the confusion. I, myself am not absolutely 100% certain about

engorgement. It was not an adult tick, so the next stage below that is a nymph

from what I found online. The picture matched up to what we had. He has had tick

bites in his lifetime and we have removed them. He has never had a reaction at

the bite site and certainly never had lymph node swelling and muscle aches

following a tick bite. Definitely though, this was not an adult tick. Thank you

for your thoughts on our son thus far. : )

> OK, so I'm not the only one who is confused about this

> I think it is very difficult to see, especially with nymphs.

>

[Guest guest]

le,

Are you saying that you do not agree with what our doctor prescribed? On a

Friday afternoon, I was so pleased to actually 'talk' to our doctor personally

on the phone and get the antibiotics called in and started last night. Thank you

for your guidance.

>

> PLEASE, PLEASE see a LYME LITERATE DOCTOR IMMEDIATELY. they will give the

> correct dosage which is usually HIGHER and for a LONGER DURATION and test

> for COINFECTIONS. all the alternative books i have read do not dispute the

> effectiveness of ANTIBIOTICS IN EARLY TREATMENT. this is IMPERATIVE. I see

> a naturopathic lyme specialist and i am totally alternative thinking but

> this is not something to mess with. antibiotics DO HAVE A PLACE in medicine,

> health, and healing and LYME IS THAT PLACE IN THIS SITUATION. i just hope

> you are not to late.

> best wishes,

> danielle

[Guest guest]

He weighs about 140. The label says 100mg 1x a day, but there are 2 refills? I

am considering doing one 2x a day and then I will call the dr's office on

Monday, to clarify what the dosage/duration is.

>

> Dose amount usually depends on weight - about how much does your son weigh?

>

>

[Guest guest]

Thank you Jeff for you thoughts.

Funny you should mention this. I eat a gluten-free, dairy-free, sugar free diet.

I told my son yesterday that for at least the next 30 days he needed to eat what

I eat (or like I do) and give his body the best shot at healing. He is agreeable

and feels best on a gluten-free diet. Thanks again!

>

> 1. Diet is absolutely key in controlling/minimizing symptoms. This is

> your second most powerful tool. He should avoid sugar for certain, and

> probably gluten and casein (milk protein). He may become sensitive to

> other foods, which you will discover by trial and error. Do not

> underestimate the power of diet: you may find that eliminating certain foods

> will make a huge difference in how he feels. I hope it does!

>

[Guest guest]

30 days is likely not enough. That is the controversy. Patient starts to feel

better, antibiotics discontinued, patient relapses. Try to go longer if you

can.

>

> After speaking to our doctor today on the phone (we see an alternative doctor

who is an MD) and explaining what has been going on, he said he wants our son to

go on 30 days of Doxycycline 100 mg (I will know how many times a day when I

pick it up in a little while) alongside the Buhner Protocol. At the end of the

30 days I am to call again. At that time, we will discuss retesting him through

IGeneX.

>

> Oh and someone asked about the tick being engorged? Apparently (according to

all of the other members of our family who saw it) it " was " engorged. I guess I

was wrong. & thank you everyone for your feedback thus far.

>

[Guest guest]

honestly, I feel our doctor would go longer if I asked. I just need to clarify

dosage. The Rx says 100mg once a day as directed and he has 2 more refills put

on it equaling 90 days. I thought I had read he needed to be on 100mg 2x a day?

I just need to call on Monday.

> 30 days is likely not enough. That is the controversy. Patient starts to feel

better, antibiotics discontinued, patient relapses. Try to go longer if you

can.

>

[Guest guest]

My son just came to me this afternoon and said he has bloody stool. He has never

had this in his life. WDYT?

[Guest guest]

Thank you le. I will e-mail you! --

> you can email me privately if you want referral names i can get out my

> insights into lyme disease book that has interviews with dr.'s here and in

> europe.

>

[Guest guest]

>

> 30 days is likely not enough. That is the controversy. Patient starts to feel

better, antibiotics discontinued, patient relapses. Try to go longer if you

can.

I'm not sure about using doxy for children, but in general (if you have

difficulty getting a prescription) a higher concentration is more important than

longer treatment at this stage. e.g. I would prefer 2x 100mg for a shorter time

instead of 1x 100mg for a longer time. Doxy will not get to the brain to protect

it, unless the dose is about 300 mg daily for average adult (not sure how this

translates to children).