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Old 02-12-2006, 12:58 PM #1 (permalink)
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Default Antibiotics, ALS and LYME: need your help, again!

Hello everyone,
I've hit a wall again, so please help:
To re-cap to date: my father was diagn w/als 1+ year ago. We took the natural approach, clense body and strengthen system.
In Dec.2005 the Bowen Lab test came back positive for Lyme. We saw a Lyme doctor. He ordered 2 more tests with Igenex Lab (aproved lab, Bowen is not approved, I think they are excellent anyway). While waiting for the tests to comeback, my father started taking Ceftin for the Lyme bacteria. Now, the tests came back positive without a doubt again, also to the CDC standard. I feel he should be on doxycycline, so have asked the dr to switch the abx.

QUESTION: Please, can anyone tell me if you had any experience with taking antibiotics and how they affected the als condition? I am so concerned that he is now introducing a major poison into his body, and in the event this is a dual hit, als/Lyme - greater damage can be sustained? Already after 2 weeks of abx, he feels worse, his hand is much weaker, and I do not know if this is a Herx reaction or als response to the toxicity of the drug.

I can not get an answer from the dr, bcause he is concerned with his Lyme aspect of it, the neuro sticks with his als and shrugs off the Lyme - and we are left with frustration and anger, which is the last thing he needs.

So, once again, I need to reach out and look for some mutual experince and share opinions here, where else?
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Old 02-12-2006, 10:11 PM #2 (permalink)
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Hi Upilia,
Coming from the Lyme point of view, many people start feeling worse after they begin antibiotic treatments for Lyme. According to what I have read, the body is fighting off the disease, and the disease is flaring up in reaction to the meds. Most people have a herx 4 weeks after starting the meds. It sounds like it could be a high possibility that he is having a herx reaction.

Coming from the ALS point of view, you don't want to do anything that is going to make your dad get worse faster (I know). With my dad, we decided to go with what the Lyme doctor said to do. Dad's ALS doctors had very little to share with him, and basically told him to make a will and that he probably would live 2-5 years. Knowing that, we decided to treat the Lymes in every way we could. That was our personal choice, and it may not be what others might have done. We have stuck out the treatments, and there have been many ups and downs. I would talk to both doctors and see if they could even talk together to come up with a solution to what is happening with your dad. Then you could get both of their perspectives together. I don't know if they will do that or not, but my dad's local doctor, neurologist, and Lyme doctor have all kept in contact to review my dad's progress.

Good luck. I know this is so tough.
Dana
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Old 02-12-2006, 10:51 PM #3 (permalink)
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Hi Dana,

Thanks. On the ALS front we have no one to consult with. On the Lyme front - I spoke with the doctor and he will consult with Burrascano as to changing the abx. It seems so vicious - how could BOTH ALS and LYME manifest themselves at the same time? And if you chose to treat one, it accelerates the other?!

A woman on the ALSTDF forum had posted this very same question regarding her 22 year old son.

On that forum they have als foundation members/researchers post replies, so I am going to spend some time reading (and already posted the abx questions).

Take care.

Last edited by David : 03-07-2006 at 08:03 AM
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Old 02-22-2006, 11:36 AM #4 (permalink)
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Default Lyme and ALS

My specialty field of knowledge is Lyme rather than ALS, but there are too many people with both for me to consider this purely coincidence. Britannica Encylopedia states that there is a gene for ALS but that this does not account for all cases of ALS, the other form is called "sporadic ALS". This is the form which I personally feel may be due to chronic neurologic Lyme. The Canadian Lyme Disease Foundation has posts from several cases like this. It does seem that ALS from the non-genetic form does respond to antibiotics that are used for Lyme. These antibiotics will not make ALS worse if it has a genetic component. However the word antibiotic means "against life". While it kills the bacteria, it also kills cells within the human body. Therefore anyone on longterm antibiotic therapy needs serious nutritional support. And... long term.... I mean over one year... is needed for chronic Lyme. Neurologic Lyme requires an initial treatment of 3-4 weeks of IV antibiotics in most cases, followed by one year of oral. Most doctors knowledgeable in Lyme will switch antibiotic type about every 3-4 months. There are several good doctors very knowledgeable in Lyme and also will keep the ALS in mind while treating. My role is as a nutritional consultant and being sure the patient knows what questions to ask the doctor.
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Old 02-22-2006, 05:18 PM #5 (permalink)
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Which brings on the next question:
You speak of nutritional support.
Given the carbs restricted diet, and emphasis on protein, where can I find a suggested list/menu - ANYTHING, so we can have a comprehensive diet regiment. The "Lyme" Dr. my father is seeing (well, saw one time) just gave us copy of the general literature on what not to eat. That is far cry from giving one something concrete or, shall I say - more detailed.
Any suggestions or sites to visit on that issue?
THANKS!
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Old 02-22-2006, 06:41 PM #6 (permalink)
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Default lyme and nutrtion

I dont use calorie restriction, but rather type of carbs are important. White sugar, honey, maple syrup, etc make lyme grow rapidly as does alcohol. check all meds and supplements to be sure alcohol-free. Also white flour seems to make symptoms worse. Low calorie veggies can be eaten in fairly large quantities. Some fruits have restrictions. I have no problem with protein such as meat and eggs. I make sure clients get very high levels of antioxidants and use a specific company to assure that. You can click on my profile and email me from there for name of company, etc. There is also a mushroom supplement I use which seems to increase stamina and energy. Now I realize this is an ALS webpage and I am mostly addressing Lyme, but then I think ALS patients should be tested for lyme.
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Old 02-22-2006, 07:43 PM #7 (permalink)
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Hi,
I went to the website that ritarhoads suggests on another thread, and find that, besides being able to purchase lots of antioxidents, etc, from this company, there is also a business opportunity there in the Network Marketing industry. I thought this might be of interest.
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Old 02-22-2006, 08:23 PM #8 (permalink)
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ok, so yes there is a business opp but that is not why I got into it. I am a nurse who loves to educate and it dovetails greatly with my efforts. However those with ALS and their family who are looking for a homebased opp, I am willing to work with them. It is, however, work, not a get rich easy scheme. For those who decide to order the antioxidants from Pharmanex, my ID # is US9631802. You will need that if you try to order. I prefer you contact me first so that I can advise you what is best for your particular case. I do NOT charge for that mini sort of consult. My expertise is more lyme than ALS, but I can always learn.
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Old 02-22-2006, 08:28 PM #9 (permalink)
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In response to Upila, I have a colleague who does intense 2hour consultations. Will do over the phone if not in geographical proximity. I think she charges $125-$150 for the 2 hours and will help formulate a diet plan. She is a nurse.
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Old 02-22-2006, 10:05 PM #10 (permalink)
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Meg,
I don't like being sold things either. There is the right time and the right place to make a sell - and a Lyme or ALS site IS NOT IT. I am sick of having to pay for everything - so when we talk on these forums, we REALLY DO NOT WANT TO BE SOLD THINGS! We need each other's sincere help and support.

On the other hand,

Why do you think there are several clinical trial going using various antibiotics on ALS patients? Not just random proposal. If things were so easily black and white -choices we make would not really require too much exertion.

No, I think it's an array of possibilities and unknowns, with few glimpses of perhaps in between... We are complex bodies, living in complex, messed-up world, under totally messed-up environments, ingesting completely messed-up foods, and inhaling poluted air.

So, they can be that good in absolutely diagnosing ALS, but can't offer much else? I just can't accept that - given the vast number of inadequate doctors out there, sure there is room for "occasional" error. You speak of "if a properly diagnosed ALS" - but that's just it, not every PALS has been properly diagnosed. So, few have the luxury to hope, they are the ones wrongly diagnosed - if you are a gambler - it's a pretty good bet.

Even the worst lottery, has some winners. I'd take the odds any time, especially if it's for the one and only life we have. Finality can be a very dreadful concept.
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Old 02-23-2006, 07:27 AM #11 (permalink)
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Default Re:

Quote:
Originally Posted by upila
Why do you think there are several clinical trial going using various antibiotics on ALS patients? Not just random proposal. If things were so easily black and white -choices we make would not really require too much exertion.
The only antibiotic that is being investigagted for ALS by reputable ALS research organizations is minocycline.

Minocycline is NOT being looked at for its antibiotic properties. It is a specialized antibiotic that has anti-inflammatory and anti-microglial properties and has been used to treat rheumatoid arthritis. It is thought that those same properties may slow the progression of both ALS and MS, as well as, perhaps, other neurological diseases. No serious ALS scientists are investigating antibiotics as ALS treatments.

Last edited by David : 09-14-2009 at 02:57 AM
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Old 02-23-2006, 02:48 PM #12 (permalink)
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Meg,
People have to make their own choices for everything. Of course, if a person, who has never been exposed to the possibility of being bit by an infectious tick by virtue of his/her environment/habitat, and is diagnosed with ALS after all else was excluded - I would say, chances of being Lyme infected are pretty nil.

However, for those of us, who live in the areas designated as red-hot for Lyme ticks, have been bit, exhibit symptoms, and have been diagn with ALS, but never checked for Lyme? You mean to tell me this is a scam? If I am that one person in a 1,000 who does indeed end up having Lyme AND gets better - EXCUSE ME, but I will be a verry happy person.

Anyone can make up their own mind. I am a hard core skeptic about most matters in life. Getting a Lyme test has not been something done without a thought and detailed time-table of events over 15 years, to realize, this was one major possibility we never considered. So it is being considered now.

If it works - I will post.
If it does not turn out to be of help - I will post.
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Old 02-23-2006, 06:22 PM #13 (permalink)
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Don't want to get into a peein contest here but anybody ever wonder why no lab in Canada has been able to consistently come up with positive tests for Lyme? Ok we only have 35 million people but some of them are smart. The US has 350 million people , some of them smart. So the question is; are all the rest of these labs incompetent? If so somebody should be screaming about the wasted money. Also in the states when you pay for the test why does the 2 most expensive labs have the most positives? They must recruit the smartest of the smart or just have vast amounts of money (your money) that can be used for the best equipment that even the CDC can't afford or refuses to use. Hmmm. Kind of makes you wonder doesn't it. If you really give it the proper perspective.
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Old 02-23-2006, 11:00 PM #14 (permalink)
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This Lyme vs ALS, diagnosis, misdiagnosis, factor in ALS onset appears to be a continual debate. Which to me is great, as they don't know alot about the reasons behind the disease. Exposure to toxins, genetics, bites, a bad poker hand.
Below I read about antibiotic treatments. I orginally came here because someone I knew was supposedly diganosed with ALS. When the Lyme debate came up the first time, I mentioned it. He had been tested, of course in Canada, with a negative response. However, he was supposedly on an IV antibiotic taken about every 10 days, self done, and this was a trial.
Can anyone shed some light if they have had similar trials.
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Old 02-24-2006, 12:02 AM #15 (permalink)
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Default ALS, LYME, ANTIBODIES AND CLINICAL TRIAL

My brother recently (nov) diagnosed w/ ALS is getting ready stt a trial at
Kansas University Medical Center (KUMC). They told him his Lyme Test results were negative also and they started him on a second medication. The First med is the only FDA approved on .....hmm cant remember the name of it and the second one starts w/ an X...

Sorry, please be patient with me as I am just learning of this disease. What info do I need to find out more about this clinical trial? It may be possible that you are in (or will be) in the same one?
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