HELP!

[Guest guest]

I was dx in december with neuro lyme....overcame and cognition is now 100%, but

the last few weeks I have now had swallowing, breathing and muscle

weakness...the breathing is really scaring me, I don't have a LLMD, as I am an

herbalist I have treated myself up to this point. I am mildly anemic and have

started adding iron to my supps. I notice some days the breathing is better

others not as swallowing comes and goes, the weakness in left arm comes and goes

but they are always apparent...any thoughts of what to do. I finally found a

supposed LLMD in FT Worth Texas that I am going to see next thursday, maybe he

can help. My fear is that these are ALS symptoms and my uncle died two years

ago of ALS I think he had lyme he was a hunter/fisher for 40 years. My mom was

just dx with chronic lyme, so i am confused. dana

[Guest guest]

Hi Dana,Recently, a FL report mentioned that in one particular study, 100% of ALS autopsies revealed that they had Lyme. On the surface, this sounds like bad news, until one realizes that most people with ALS are treated with drugs that are not so good for Lyme, and that allopathic medicine had probably failed them. You're lucky to know you have Lyme, as there are so many different protocols that can lead you back to better health. We all have various manifestations of Lyme, so there's no one-size-fits-all approach, but with ups and downs, trial and error, gradually more ups and ups, patience, and pro-active attitude, you WILL get better and better. Please don't feed this thing fear, (although I'm sure when you're constricted in your throat, the physical tendency to panic has got to be almost irresistible). I've seen so many people with severe neuro Lyme get so much better, that I think you're headed in the right direction out of this tunnel. Good luck with your LLMD!Be well,LénaI was dx in december with neuro lyme....overcame and cognition is now 100%, but the last few weeks I have now had swallowing, breathing and muscle weakness...the breathing is really scaring me, I don't have a LLMD, as I am an herbalist I have treated myself up to this point. I am mildly anemic and have started adding iron to my supps. I notice some days the breathing is better others not as swallowing comes and goes, the weakness in left arm comes and goes but they are always apparent...any thoughts of what to do. I finally found a supposed LLMD in FT Worth Texas that I am going to see next thursday, maybe he can help. My fear is that these are ALS symptoms and my uncle died two years ago of ALS I think he had lyme he was a hunter/fisher for 40 years. My mom was just dx with chronic lyme, so i am confused. dana

[Guest guest]

Hi Dana,Like yourself, I was diagnosed with lyme late last year. But I was also diagnosed with ALS in March 2009. My condition is far far more advanced than yours, in that I have already lived past the my "use by date" as given to me at the time of my ALS diagnosis.I cannot emphasize enough what a blessing it is for you to have found out now that you have LD, as Lena has also mentioned. What is important for you now is to firmly establish what your fundamental Lyme treatment will be, eg. Rife, Salt/C, Herbals, abxs (eek), etc., and set out a strategy and follow it religiously. When treating Lyme, there will be times when you think it is not working or that you are going backward, but if you are following that treatment protocol correctly (and not trying to cut corners), stick to it and you will come through.Once

you have your treatment program in action, then depending on your herx levels, etc., you can then choose to add some additional treatments to support your fundamental program. Eg. If you are Rifing, then you might later add Salt/c or MMS, etc. As you go along, keep in touch with the board and you will get all the support you need.Regardless of what treatment modality you choose, make sure that you have a good detox program running at the same time. Many fall for the trap that the detox is not real important, but it is. Detox is just as important as the treatment itself, if not more. If you have questions about detoxing, post them on the board. There are many here who are a wealth of information on this topic and are only too happy to help.But aside from these specific Lyme treatments, there are some things that you can do to help your body fight against the onset of the ALS symptoms - if that is what they

are. It appears that the main factor that causes a lyme patients to present with ALS symptoms, is their inability to handle excess glutamate - possibly something genetic. It is this excess glutamate that over fires the motor neurons that causes their death. Muscle twitches (fasciculations) that are common with AL:S patients are evidence of this over firing. In lyme patients, an excess of glutamate is created through the borrelia's production of ammonia. So taking supplements to reduce that ammonia will help. But also your diet is important. You need to avoid foods containing high glutamate levels (and there are plenty - google it) and also foods containing excitotoxins such as aspartate, MSG, flavorings, "diet" sweeteners, etc. It's impossible to remove all glutamate from your diet and its impossible to remove all the ammonia, but the more you can, the more you will slow the glutamate damage until you

are able to reduce the lyme bacterial burden down enough. Finally, I can highly recommend that you also take good doses of antioxidants. Vit C, Vit E, etc. Taking super high doses is good, but you will get more benefit by taking good doses of a selection of antioxidants. You also may consider looking at Low Dose Naltrexone (LDN). I know of ALS patients who have started taking it and have seen their ALS symptoms disappear altogether - the earlier on in the progression you are, the better it seems to work, although there is benefit to be had at any stage. Many find it stops the progression altogether. LDN also has the advantage that it boosts your immune sysntem, which can only help when fight Lyme. Oh, I nearly forgot, make sure you magnesium intake is sufficient as well. As far as your current symptoms, if you do the things I've suggested, you may see them disappear or reduce somewhat. With

the swallowing and breathing (but particularly the swallowing) just try going without wearing any deodorant for 4 or 5 days. I mean NO DEODORANT at all, not even natural stuff. I had read some info from others, but I have also proven beyond doubt that it has an enormous affect on my swallowing, so I don't wear it at all now. Maybe that's why people do visit me anymore? ; )Feel free to contact me if I can help any further.-Take care,-nSubject: HELP!To: Lyme_and_Rife Received: Sunday, 24 April, 2011, 2:40 AM

I was dx in december with neuro lyme....overcame and cognition is now 100%, but the last few weeks I have now had swallowing, breathing and muscle weakness...the breathing is really scaring me, I don't have a LLMD, as I am an herbalist I have treated myself up to this point. I am mildly anemic and have started adding iron to my supps. I notice some days the breathing is better others not as swallowing comes and goes, the weakness in left arm comes and goes but they are always apparent...any thoughts of what to do. I finally found a supposed LLMD in FT Worth Texas that I am going to see next thursday, maybe he can help. My fear is that these are ALS symptoms and my uncle died two years ago of ALS I think he had lyme he was a hunter/fisher for 40 years. My mom was just dx with chronic lyme, so i am confused. dana

[Guest guest]

this is a great post, brendan, thank you! want to add a bit more for anyone struggling with this glutamate problem. glutamate can bind to lots of receptors in the brain including one that helps transport calcium to the nerves. glutamate and calcium get the nerves firing and the neurons just keep endlessly firing and inflaming. i try to get my calcium needs met through food and i use GABA to help balance the glutamates. and like you say, keep magnesium levels up there. you can buy gaba as a powder but i've just been told that taking it sublingually is the best way. i think now brand has a sublingual. i'm now holding the powder under my tongue, not bad, it is sweet. start slowly as it can give you a flush like niacin.hope all of you in a flare are feeling a better now. i'm out of bed a few more hours today so i'm very happy.xoxo susie Hi Dana,Like yourself, I was diagnosed with lyme late last year. But I was also diagnosed with ALS in March 2009. My condition is far far more advanced than yours, in that I have already lived past the my "use by date" as given to me at the time of my ALS diagnosis.I cannot emphasize enough what a blessing it is for you to have found out now that you have LD, as Lena has also mentioned. What is important for you now is to firmly establish what your fundamental Lyme treatment will be, eg. Rife, Salt/C, Herbals, abxs (eek), etc., and set out a strategy and follow it religiously. When treating Lyme, there will be times when you think it is not working or that you are going backward, but if you are following that treatment protocol correctly (and not trying to cut corners), stick to it and you will come through.Once you have your treatment program in action, then depending on your herx levels, etc., you can then choose to add some additional treatments to support your fundamental program. Eg. If you are Rifing, then you might later add Salt/c or MMS, etc. As you go along, keep in touch with the board and you will get all the support you need.Regardless of what treatment modality you choose, make sure that you have a good detox program running at the same time. Many fall for the trap that the detox is not real important, but it is. Detox is just as important as the treatment itself, if not more. If you have questions about detoxing, post them on the board. There are many here who are a wealth of information on this topic and are only too happy to help.But aside from these specific Lyme treatments, there are some things that you can do to help your body fight against the onset of the ALS symptoms - if that is what they are. It appears that the main factor that causes a lyme patients to present with ALS symptoms, is their inability to handle excess glutamate - possibly something genetic. It is this excess glutamate that over fires the motor neurons that causes their death. Muscle twitches (fasciculations) that are common with AL:S patients are evidence of this over firing. In lyme patients, an excess of glutamate is created through the borrelia's production of ammonia. So taking supplements to reduce that ammonia will help. But also your diet is important. You need to avoid foods containing high glutamate levels (and there are plenty - google it) and also foods containing excitotoxins such as aspartate, MSG, flavorings, "diet" sweeteners, etc. It's impossible to remove all glutamate from your diet and its impossible to remove all the ammonia, but the more you can, the more you will slow the glutamate damage until you are able to reduce the lyme bacterial burden down enough. Finally, I can highly recommend that you also take good doses of antioxidants. Vit C, Vit E, etc. Taking super high doses is good, but you will get more benefit by taking good doses of a selection of antioxidants. You also may consider looking at Low Dose Naltrexone (LDN). I know of ALS patients who have started taking it and have seen their ALS symptoms disappear altogether - the earlier on in the progression you are, the better it seems to work, although there is benefit to be had at any stage. Many find it stops the progression altogether. LDN also has the advantage that it boosts your immune sysntem, which can only help when fight Lyme. Oh, I nearly forgot, make sure you magnesium intake is sufficient as well. As far as your current symptoms, if you do the things I've suggested, you may see them disappear or reduce somewhat. With the swallowing and breathing (but particularly the swallowing) just try going without wearing any deodorant for 4 or 5 days. I mean NO DEODORANT at all, not even natural stuff. I had read some info from others, but I have also proven beyond doubt that it has an enormous affect on my swallowing, so I don't wear it at all now. Maybe that's why people do visit me anymore? ; )Feel free to contact me if I can help any further.-Take care,-non to my supps. I notice some days the breathing is better others not as swallowing comes and goes, the weakness in left arm comes and goes

[Guest guest]

Thanks for this, I take GABA powder but was mixing in with some others in water

to take at bedtime. I'll experiment with sublingual and see if it makes a

difference.

Sherry

>

> this is a great post, brendan, thank you!

>

> want to add a bit more for anyone struggling with this glutamate

> problem. glutamate can bind to lots of receptors in the brain

> including one that helps transport calcium to the nerves. glutamate

> and calcium get the nerves firing and the neurons just keep endlessly

> firing and inflaming. i try to get my calcium needs met through food

> and i use GABA to help balance the glutamates. and like you say,

> keep magnesium levels up there. you can buy gaba as a powder but

> i've just been told that taking it sublingually is the best way. i

> think now brand has a sublingual. i'm now holding the powder under

> my tongue, not bad, it is sweet. start slowly as it can give you a

> flush like niacin.

>

[Guest guest]

Hi, where do you get your powdered GABA?thx    Barbara

 

this is a great post, brendan, thank you!   want to add a bit more for anyone struggling with this glutamate problem.   glutamate can bind to lots of receptors in the brain including one that helps transport calcium to the nerves.  glutamate and calcium get the nerves firing and the neurons just keep endlessly firing and inflaming.  i try to get my calcium needs met through food and i use GABA to help balance the glutamates.  and like you say, keep magnesium levels up there.  you can buy gaba as a powder but i've just been told that taking it sublingually is the best way.  i think now brand has a sublingual.  i'm now holding the powder under my tongue, not bad, it is sweet.  start slowly as it can give you a flush like niacin.

hope all of you in a flare are feeling a better now.  i'm out of bed a few more hours today so i'm very happy.xoxo susie

  Hi Dana,Like yourself, I was diagnosed with lyme late last year.  But I was also diagnosed with ALS in March 2009.  My condition is far far more advanced than yours, in that I have already lived past the my " use by date " as given to me at the time of my ALS diagnosis.

I cannot emphasize enough what a blessing it is for you to have found out now that you have LD, as Lena has also mentioned.  What is important for you now is to firmly establish what your fundamental Lyme treatment will be, eg. Rife, Salt/C, Herbals, abxs (eek), etc., and set out a strategy and follow it religiously.  When treating Lyme, there will be times when you think it is not working or that you are going backward, but if you are following that treatment protocol correctly (and not trying to cut corners), stick to it and you will come through.

Once you have your treatment program in action, then depending on your herx levels, etc., you can then choose to add some additional treatments to support your fundamental program.  Eg. If you are Rifing, then you might later add Salt/c or MMS, etc. As you go along, keep in touch with the board and you will get all the support you need.

Regardless of what treatment modality you choose, make sure that you have a good detox program running at the same time.  Many fall for the trap that the detox is not real important, but it is.  Detox is just as important as the treatment itself, if not more.  If you have questions about detoxing, post them on the board.  There are many here who are a wealth of information on this topic and are only too happy to help.

But aside from these specific Lyme treatments, there are some things that you can do to help your body fight against the onset of the ALS symptoms - if that is what they are.  It appears that the main factor that causes a lyme patients to present with ALS symptoms, is their inability to handle excess glutamate - possibly something genetic.  It is this excess glutamate that over fires the motor neurons that causes their death.  Muscle twitches (fasciculations) that are common with AL:S patients are evidence of this over firing.

In lyme patients, an excess of glutamate is created through the borrelia's production of ammonia. So taking supplements to reduce that ammonia will help.  But also your diet is important.  You need to avoid foods containing high glutamate levels (and there are plenty - google it) and also foods containing excitotoxins such as aspartate, MSG, flavorings, " diet " sweeteners, etc.   It's impossible to remove all glutamate from your diet and its impossible to remove all the ammonia, but the more you can, the more you will slow the glutamate damage until you are able to reduce the lyme bacterial burden down enough.

Finally, I can highly recommend that you also take good doses of antioxidants.  Vit C, Vit E, etc.  Taking super high doses is good, but you will get more benefit by taking good doses of a selection of antioxidants.  You also may consider looking at Low Dose Naltrexone (LDN).  I know of ALS patients who have started taking it and have seen their ALS symptoms disappear altogether - the earlier on in the progression you are, the better it seems to work, although there is benefit to be had at any stage.  Many find it stops the progression altogether.  LDN also has the advantage that it boosts your immune sysntem, which can only help when fight Lyme.  Oh, I nearly forgot, make sure you magnesium intake is sufficient as well.

As far as your current symptoms, if you do the things I've suggested, you may see them disappear or reduce somewhat.  With the swallowing and breathing (but particularly the swallowing) just try going without wearing any deodorant for 4 or 5 days.  I mean NO DEODORANT at all, not even natural stuff. I had read some info from others, but I have also proven beyond doubt that it has an enormous affect on my swallowing, so I don't wear it at all now.  Maybe that's why people do visit me anymore?  ;  )

Feel free to contact me if I can help any further.-Take care,-non to my supps. I notice some days the breathing is better others not as swallowing comes and goes, the weakness in left arm comes and goes 

[Guest guest]

I get mine from Beyond a Century.

Sherry

>

> Hi, where do you get your powdered GABA?

>

> thx Barbara

>

>

[Guest guest]

they say sublingual gaba is the best to take when I was looking the info up on it. I take it due to the als type

symptoms I was having a lot of it seems to help.

From: scdlymie

Sent: Monday, May 16, 2011 12:58 AM

To: Lyme_and_Rife

Subject: Re: HELP!

I get mine from Beyond a Century.Sherry>> Hi, where do you get your powdered GABA?> > thx Barbara> >

[Guest guest]

Glad to hear from you n,

I do not find the original post of DanaTHank you Suzie for your info .

With Gaba I think I remember that dct S told me that Gerovital was turning into Gaba within half an hour.

For the ALS there is Edney book that is interesting his approach to bit his deasease is mostly detoxification to my knowledge he is not aware of th elyme desease

connection.

There is also the dct kane protocol alpha lipoic acid by iv + gluthation iv and lipostabile IV . All this is too expensive. still gluthation as suppository will go int he veine and th epills of alpha lipoic acid works for th elipid the phosphatidycholine may do a little bit altogoether of what this expensive one do by IV

there is also a person who healed from ALS with the edgar caice treatment he now travel all over USA to dispatch the info to help . it i snot the radiac i tis the other one .

www.baar.com

For me I got out of the ALS symptoms with the life threatening protocol of MMS ( the rapid lost of weight not the paralysis). the colonics+ coil +LDN+welchol i swhat did th e job for the paralysis.

Hoping you all improve soon

Marie

To: Lyme_and_Rife Sent: Mon, May 16, 2011 12:51:26 AMSubject: Re: HELP!

Hi, where do you get your powdered GABA?

thx Barbara

this is a great post, brendan, thank you!

want to add a bit more for anyone struggling with this glutamate problem. glutamate can bind to lots of receptors in the brain including one that helps transport calcium to the nerves. glutamate and calcium get the nerves firing and the neurons just keep endlessly firing and inflaming. i try to get my calcium needs met through food and i use GABA to help balance the glutamates. and like you say, keep magnesium levels up there. you can buy gaba as a powder but i've just been told that taking it sublingually is the best way. i think now brand has a sublingual. i'm now holding the powder under my tongue, not bad, it is sweet. start slowly as it can give you a flush like niacin.

hope all of you in a flare are feeling a better now. i'm out of bed a few more hours today so i'm very happy.

xoxo susie

Hi Dana,Like yourself, I was diagnosed with lyme late last year. But I was also diagnosed with ALS in March 2009. My condition is far far more advanced than yours, in that I have already lived past the my "use by date" as given to me at the time of my ALS diagnosis.I cannot emphasize enough what a blessing it is for you to have found out now that you have LD, as Lena has also mentioned. What is important for you now is to firmly establish what your fundamental Lyme treatment will be, eg. Rife, Salt/C, Herbals, abxs (eek), etc., and set out a strategy and follow it religiously. When treating Lyme, there will be times when you think it is not working or that you are going backward, but if you are following that treatment protocol correctly (and not trying to cut corners), stick to it and you will come through.Once you have your treatment program in action, then depending on your herx levels,

etc., you can then choose to add some additional treatments to support your fundamental program. Eg. If you are Rifing, then you might later add Salt/c or MMS, etc. As you go along, keep in touch with the board and you will get all the support you need.Regardless of what treatment modality you choose, make sure that you have a good detox program running at the same time. Many fall for the trap that the detox is not real important, but it is. Detox is just as important as the treatment itself, if not more. If you have questions about detoxing, post them on the board. There are many here who are a wealth of information on this topic and are only too happy to help.But aside from these specific Lyme treatments, there are some things that you can do to help your body fight against the onset of the ALS symptoms - if that is what they are. It appears that the main factor that causes a lyme patients to present

with ALS symptoms, is their inability to handle excess glutamate - possibly something genetic. It is this excess glutamate that over fires the motor neurons that causes their death. Muscle twitches (fasciculations) that are common with AL:S patients are evidence of this over firing. In lyme patients, an excess of glutamate is created through the borrelia's production of ammonia. So taking supplements to reduce that ammonia will help. But also your diet is important. You need to avoid foods containing high glutamate levels (and there are plenty - google it) and also foods containing excitotoxins such as aspartate, MSG, flavorings, "diet" sweeteners, etc. It's impossible to remove all glutamate from your diet and its impossible to remove all the ammonia, but the more you can, the more you will slow the glutamate damage until you are able to reduce the lyme bacterial burden down enough. Finally, I can

highly recommend that you also take good doses of antioxidants. Vit C, Vit E, etc. Taking super high doses is good, but you will get more benefit by taking good doses of a selection of antioxidants. You also may consider looking at Low Dose Naltrexone (LDN). I know of ALS patients who have started taking it and have seen their ALS symptoms disappear altogether - the earlier on in the progression you are, the better it seems to work, although there is benefit to be had at any stage. Many find it stops the progression altogether. LDN also has the advantage that it boosts your immune sysntem, which can only help when fight Lyme. Oh, I nearly forgot, make sure you magnesium intake is sufficient as well. As far as your current symptoms, if you do the things I've suggested, you may see them disappear or reduce somewhat. With the swallowing and breathing (but particularly the swallowing) just try going

without wearing any deodorant for 4 or 5 days. I mean NO DEODORANT at all, not even natural stuff. I had read some info from others, but I have also proven beyond doubt that it has an enormous affect on my swallowing, so I don't wear it at all now. Maybe that's why people do visit me anymore? ; )Feel free to contact me if I can help any further.-Take care,-n

on to my supps. I notice some days the breathing is better others not as swallowing comes and goes, the weakness in left arm comes and goes

[Guest guest]

Where do you get the sublingual GABA Dana? Thanks

>To: Lyme_and_Rife

>Sent: Monday, May 16, 2011 11:17 AM

>Subject: Re: Re: HELP!

>

>

> 

>they say sublingual gaba is the best to take when I was looking the info up on

it.  I take it due to the als type

>symptoms I was having a lot of it seems to help.

>

>

>From: scdlymie

>Sent: Monday, May 16, 2011 12:58 AM

>To: Lyme_and_Rife

>Subject: Re: HELP!

>

> 

>I get mine from Beyond a Century.

>

>Sherry

>

>

>>

>> Hi, where do you get your powdered GABA?

>>

>> thx Barbara