Re:to have or to not to have Lyme

[Guest guest]

Hi all,

I just wanted to vent my frustration with the medical community treating

Lyme. I have had three unsuccessful IV treatments so far, did Buhner for a

while with little success and have not found a doctor who makes any sense yet.

My neurologist finds all kind of mildly abnormal things, like mildly abnormal

MRI brain, mildly abnormal EEG, mildly abnormal MS proteins, but he does not

know what any of this means, he is not convinced I do not have Lyme anymore

despite the fact that I have still very high positives in both and

Western Blot tests (mostly all bands). Supposedly this is all old news and I

should just treat my symptoms with a seizure medicine (but I do not have

seizures, just myoclonus). I have daily fatigue, weakness, pain in all joints,

muscle cramps, I cannot walk right, my legs give out, I have memory problems

and

headaches, and cannot drive due to poor coordination. I have not been able to

go to work in over two years and my SSD hearing is finally scheduled, yet i

cannot get anything definite from the new doctor, the Lyme clinic doctor just

quit too (the first doctor I saw there lost his licence) and my family doc

(very nice young lady) has no clue about Lyme. To make my bad 13th worse, I

found a little tick on my back, completely engorged with my blood. I have not

been outside since Sunday, so I am probably reinfecting myself. Aaargh. I

am so frustrated with the doctors in my area and now I do not even have much

help with my disability hearing, since I supposedly no longer have Lyme. I

am sooooo frustrated, just wanted to share, thanks for listening.

Dagmar

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[Guest guest]

I am surprised you did not have results on Buhner's protocols. How many of his

protocols did you do at once? Did you go up to his maximum doses on the core

protocol PLUS other protocols of his? For how many months did you do this? I

found I had to go for over 5 months at the maximum to have good results. I have

also been on his protocols for over two and a half years now. I also found that

I did not have good results with them while on abx. Once I quit them, I did

much better.

I was at about 93 pills a day, plus tinctures, and vitamins for those 5.5

months. Now I am on 30 pills a day, and I think maybe I should be back up to 40

pills a day, plus the tinctures.

Jim.

###

dlkh223@... wrote:

Hi all,

I just wanted to vent my frustration with the medical community treating

Lyme. I have had three unsuccessful IV treatments so far, did Buhner for a

while with little success and have not found a doctor who makes any sense yet.

My neurologist finds all kind of mildly abnormal things, like mildly abnormal

MRI brain, mildly abnormal EEG, mildly abnormal MS proteins, but he does not

know what any of this means, he is not convinced I do not have Lyme anymore

despite the fact that I have still very high positives in both and

Western Blot tests (mostly all bands). Supposedly this is all old news and I

should just treat my symptoms with a seizure medicine (but I do not have

seizures, just myoclonus). I have daily fatigue, weakness, pain in all joints,

muscle cramps, I cannot walk right, my legs give out, I have memory problems and

headaches, and cannot drive due to poor coordination. I have not been able to

go to work in over two years and my SSD hearing is finally scheduled, yet i

cannot get anything definite from the new doctor, the Lyme clinic doctor just

quit too (the first doctor I saw there lost his licence) and my family doc

(very nice young lady) has no clue about Lyme. To make my bad 13th worse, I

found a little tick on my back, completely engorged with my blood. I have not

been outside since Sunday, so I am probably reinfecting myself. Aaargh. I

am so frustrated with the doctors in my area and now I do not even have much

help with my disability hearing, since I supposedly no longer have Lyme. I

am sooooo frustrated, just wanted to share, thanks for listening.

Dagmar

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[Guest guest]

Regarding your difficulty in obtaining a definitive Lyme diagnosis,

just curious - have you happened to have taken a 30/31 Western Blot

Igenex lab test? In short, I had an " ambiguous " result from my

Western Blot, with activity on some bands but in the end an overall

result of " negative " . Fortunately, my LLND knew of a new test that

Igenex is doing called the 30/31 test, which looks up close at these

two bands of the Western Blot - and which ended up finally giving me a

positive lab result...

Either way - hope you find some positive progress -

Steve

>

> Hi all,

>

> I just wanted to vent my frustration with the medical community

treating

> Lyme. I have had three unsuccessful IV treatments so far, did

Buhner for a

> while with little success and have not found a doctor who makes any

sense yet.

> My neurologist finds all kind of mildly abnormal things, like mildly

abnormal

> MRI brain, mildly abnormal EEG, mildly abnormal MS proteins, but he

does not

> know what any of this means, he is not convinced I do not have Lyme

anymore

> despite the fact that I have still very high positives in both

and

> Western Blot tests (mostly all bands). Supposedly this is all old

news and I

> should just treat my symptoms with a seizure medicine (but I do not

have

> seizures, just myoclonus). I have daily fatigue, weakness, pain in

all joints,

> muscle cramps, I cannot walk right, my legs give out, I have memory

problems and

> headaches, and cannot drive due to poor coordination. I have not

been able to

> go to work in over two years and my SSD hearing is finally

scheduled, yet i

> cannot get anything definite from the new doctor, the Lyme clinic

doctor just

> quit too (the first doctor I saw there lost his licence) and my

family doc

> (very nice young lady) has no clue about Lyme. To make my bad 13th

worse, I

> found a little tick on my back, completely engorged with my blood.

I have not

> been outside since Sunday, so I am probably reinfecting myself.

Aaargh. I

> am so frustrated with the doctors in my area and now I do not even

have much

> help with my disability hearing, since I supposedly no longer have

Lyme. I

> am sooooo frustrated, just wanted to share, thanks for listening.

>

> Dagmar

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists on

family

> favorites at AOL Food.

> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

>

[Guest guest]

As for Jim's question, I took every Buhner herb applicable to my symptoms,

but never made it to maximum dosing since it would make me sick to my stomach.

Andrographis was the worst, caused all kinds of side effects. I had to

discontinue for a few weeks and then start again slowly. Suppose this is like

my

only hope since traditional treatment is sure not working. As a former

healthcare employee I was just keeping all my options open and listening to both

western and non traditional medicine. I did conclude that western medicine has

no

clue about how viscious Lyme really is. I am now supposed to take a seizure

medicine Keppra even though I have no seizures, just other abnormal brain waves.

It makes me feel drugged, but does nothing for the other Lyme symptoms.

As for Steve's question, I had some California labs version of and

Western Blot this time and have nearly every band. Every test is very positive.

To me it makes no sense that they would think I no longer have Lyme if my body

still reacts to Lyme this strongly.

The only doctor I had who had been making sense was the one from the " Tick

Borne Disease Center " , who has no licence anymore and his new side kick (lovely

female doctor) already quit due to illness (she had told me she thought she

had Lyme too). Duh!! What I am really looking for now is any Lyme specialist

wether homeopathic, chinese or western who believes in nontraditional medicine.

I live in eastrn PA outside Easton, my Lyme doc was in burg NJ.

Anyone has any recommendations, let me know.

Dagmar

**************

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[Guest guest]

Hi there,

Sorry I'm replying to this so late, I missed this post somehow. I

have/had late stage lyme (babesia+borrelia) was on Buhners herbs for

about 7 months straight and for the first 5 months I could only

increase my dosage of the core protocol + all the other herbs for my

specific critters very very slowly. Even at max, I could never manage

to do 4 caps of all the herbs in 1 heaping dose 4 times a day, it made

me too sick. So instead, at max dose, I took 2 caps of each herb per

dose and took this 8-9 times a day. It still made me herx gradually

but without being horrid.

I also included vitamins, minerals, tinctures. Instead of using

Buhner's cat's claw (yes you definitely want TOA free!) I used the

liquid version Prima Una De Gato (I get it on Vitacost.com) with much

much better results and am still using it. With the prima una de gato,

I started with 1 drop and increased every 2 wks, it is very potent.

My other mandatory supplements are: Sea salt + Vit C, 1 cap of both

5-6 times a day, magnesium malate & taurinate at least 1000mg/day

(very important for combating all lyme), vit c at least 1000mg/day,

vit B complex 1 cap twice a day, artemesia, selenium, essential

mineral complex, CoQ10, Lithium (natural mineral supplement, NOT

prescription) for protecting brain cells and cell regeneration, omega

3,6,9 for nerves, alpha lipoic acid, primrose oil for nerves, MSM for

joints, liver support supplement. And more. The sea salt/C and

magnesium really improve how I feel daily.

And if my emotions are having a tough time, I take SAMe (natural

supplement found in most health food stores).

Oxygenation I find to be very important, so I add in yoga breathing

as much as possible. Lyme hates it plus it strengthens your immune

system without excess physical exertion.

Of course, I also have mercury/heavy metals that I've been detoxing

for a long long time as well as very bad candida, so I'm using

supplements for this also.

It's was tough swallowing over 100 pills every day for months, but

for me, keeping at the max dose for a couple of months, I feel it

really helped give me a boost over the lyme and feeling improvement in

daily life. I stopped taking the full buhner protocol after 7 months

mainly because I was afraid of the lyme becoming resistant to them

(which is absolutely possible, just like with traditional abx). So I

began rife treatments 1x a week and continue with the Prima Una De

Gato and supplements and daily salt+c. I feel it is nearly impossible

with late stage lyme to fully overcome it without the regular use of a

rife machine.

I now take the full Buhner herb protocol in short bursts of about 1-2

wks to throw off the lyme every couple of months.

If you cannot find a good practitioner near-by (I totally

sympathize!!! I've been through them ALL both allopathic and

alternative and currently have a great LLMD), you might want to pick

up the books: Top 10 Cures For Lyme Disease by Rosner and his

other books.

If you can get some numbers of LLMDs in PA, you might want to call

them up and ask if they know of anyone who has a rife machine they can

connect you with in your area (they're not allowed to prescribe it in

any way).

Well Wishes,

Athena

>

> I am surprised you did not have results on Buhner's protocols. How

many of his protocols did you do at once? Did you go up to his

maximum doses on the core protocol PLUS other protocols of his? For

how many months did you do this? I found I had to go for over 5

months at the maximum to have good results. I have also been on his

protocols for over two and a half years now. I also found that I did

not have good results with them while on abx. Once I quit them, I did

much better.

>

> I was at about 93 pills a day, plus tinctures, and vitamins for

those 5.5 months. Now I am on 30 pills a day, and I think maybe I

should be back up to 40 pills a day, plus the tinctures.

>

> Jim.

[Guest guest]

thanks for your info, that does sound like a good idea splitting the pills

in smaller doses. I might try this to get to a higher dose. Sounds like a

good idea.

Dagmar

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