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View Full Version : Antibiotics, ALS and LYME: need your help, again!


175
02-12-2006, 12:58 PM
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?

155
02-12-2006, 10:11 PM
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

175
02-12-2006, 10:51 PM
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.

334
02-22-2006, 11:36 AM
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.

175
02-22-2006, 05:18 PM
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!

334
02-22-2006, 06:41 PM
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.

182
02-22-2006, 07:43 PM
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.

334
02-22-2006, 08:23 PM
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.

334
02-22-2006, 08:28 PM
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.

175
02-22-2006, 10:05 PM
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.

212
02-23-2006, 07:27 AM
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.

175
02-23-2006, 02:48 PM
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.

71
02-23-2006, 06:22 PM
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.
Al

64
02-23-2006, 11:00 PM
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.

335
02-24-2006, 12:02 AM
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? :?:

335
02-24-2006, 12:08 AM
Hi Al. I couldn't help but notice that you have been a member since 2004.
Have you been misdiagnosed with ALS, Lyme, andf if you dont mind me askin' "What's yur 20"?

175
02-24-2006, 12:48 AM
Hi Theresa,
It is a self-trial basically - what we are doing. There are several persons on the Lyme forum, who have been diagnosed with ALS and are also positive for Lyme. One of them had negative results from Igenex, but is proceeding with IV Rocephin, anbx for advanced Lyme stage (which incidentally is also the subject of an ALS clinical trial).

The other debate is, that the main-stream Lyme tests give over 60% false negatives, while Igenex has about 70% positive rate... Take your pick. There are plenty of people who argue each side.

It seems so sad, that even though this debate/controversy has been around for quite a while - at the very least 2-4 years - no data has been collected from these "cross-over" cases in any sensible manner. Or, is it just now, with the popularization of the Internet, that people can exchange their own experiments? I don't know. Time will tell. It is with great apprehension that we have decided to take that route, because ALS and toxins in the body can spell faster progression, for sure. And abx are super toxins. My nightmare is that we may be dealing with both.

That is why I keep asking for anyone with any knowledge of reactions, results, anything dealing with the ALS/Lyme/antibiotics situation to please, share.

71
02-24-2006, 02:21 AM
Hi Lilbro. I've been diagnosed with ALS by 3 Neurologists at 3 top notch hospitals in Toronto and area. Tested negative for Lyme. Have another Neuro that thought I might have MNN. Had all the tests MRI, Lumbar puccture, CT scan,buckets of blood and I am getting weaker, losing the use of my hands ,can't walk far and my breathing is crap. Used Bipap since Jan. 05. I'm about 45 min Northwest of Toronto.
Al.

335
02-24-2006, 01:57 PM
Hi Al.
Thanks for replying. I have so many questions. What is MNN? I tried a search but came up with nothing medically related..?
My brother Darren is taking anbx just after his spc tap (is this test the same as the lumbar puncture that Upila mentioned?) due to his not feeling well at all. Before the tap he was feeling no pain whatsoever. I am curious to know if there's a possiblility that the docs (worldwide) are just experimenting with all of us. I will refrain from voicing; or rather punching of keys, my opinion on that issue!

PS Should I let my brother in on this Forum? I don't know if it is too soon to subject him to the reality of all of this. He's my baby bro and me the only (overprotective) sister of 43 years, ha! Go figure! He is a young 36 yrs. Works in aerospace since high school, no military, father in Korean War, and several uncles in War.

175
02-24-2006, 02:21 PM
Hi LilBro,

Spinal Tap and Lumbar procedure are one and the same. (My father had that, too, before being diagn w/ALS. His spinal tap was clear, i.e. did not indicate some other involvement.)

My question in re your brother:

If they diagnosed him with ALS, what is the antibiotic for? Was it prescribed by the ALS doctor? Does he have an infection of any kind?

It would be helpful to find out what the 2 drugs he is on are.

335
02-24-2006, 02:47 PM
Hi Upila
I will have to get back with you tonite (Calif. time) as I have to talk to my brother first. thanks so much. this forum is awesome..Raschelle

71
02-24-2006, 04:42 PM
Hi LilBro. Don't worry about being patient. We don't get crabby like some of the other sites. We are all in this together and are here to learn. MNN is Multi Focal Motor Neuropathy. It's a little more obscure than ALS but is a motor neuron disease as well. They think it is an auto immune disorder. You can find about it and some of the other fun disorders at this website. It is quite technical but is the most thorough one I have found.
http://www.neuro.wustl.edu/neuromuscular/index.html
Take a look. Al.

335
02-24-2006, 09:23 PM
Upila, hello again. Below is the email that my Bro sent me. Im hoping that soon he will be conversing with all of you for help in understanding all this crap! He still works full time and then some in management along with the high stress on top of that (at work and the homefront). Im sure that doesn't help his health. His doctor (who specializes in neurology/disease)hasn't suggested any kind of healthy diet plan. Is this right, or is this just "Alternative Medicine"?

Hello sis,

I had a spinal mylogram performed on me. Not sure if this is the same as
spinal tap. The drug I'm on now is called Rilutek. This drug is supposed
to increase my life by 2 - 3 Months. The other trial drug I start tomorrow
and I will give you the name then

175
02-24-2006, 09:59 PM
Hi,
Your brother is on the only drug which has been so far formally approved for ALS. If you look back under that subject - there were numerous posts regarding Rilutek.

Most likely, many will share my opinion, that establishing a good diet IS EXTREMELY IMPORTANT. Yes, it's normal (irony!) for the neuro not to suggest anything in particular - happened to us as well.

Again, if you look back at our previous posts, we have been discussing that in length. The very basic idea is to introduce as much as possible natural, toxin-free foods, drink a lot of water to flush out the accumulated toxins in the body, AVOID at all costs foods containing artificial "stuff," MSG, flavours and a whole lot of other ingredients meant to help long shelf life, preservatives, SUGAR, especially processed white sugar, ALL diet sweeteners, SODAS, red meat, starches should be minimized and so on. Make your juices, instead of buying them. If it comes in a can, box or a bottle, chances are - it's not good for you. Organic produce is better in most instances. Many follow supplement regiments, most of which are self-directed, after we read and read and read, and then little by little we establish a regiment which seems to be OK, or so we percieve it to be.

By doing the above, the body should be made freer of toxins, the diet and the supplements should introduce greater flow of antioxidants which in turn are supposed to help chase the free radicals and thus slower the rate at which the neurons are damaged.

This is the general idea. The more you read, the more you will fine-tune what is best applicable to your brother.

397
03-29-2006, 09:52 AM
Upila, I am knew to this forum and still don't have a diagnosis after 2 years of symptoms but I can tell you twice I went on cefuroxime a member of the ceftin family and all my symptoms went away. I know he would need large doses of it if his symptoms are far along.

whitey

175
03-29-2006, 12:39 PM
Hi,

Thanks for your post:

Did you take Ceftin for Lyme? Are you also diagnosed with ALS?

What symptoms did the Ceftin get rid of while you were on it?

And, lastly - how far into either Lyme or ALS are you?

We are afraid of high dose abx - does not seem that the damage done during his abx taking will be fully reversed.

397
03-30-2006, 12:47 AM
Upila, I was put on ceftin because of a sinus infection. It cleared my sinuses but also took away my stiff neck, cold, numb, and tingly feet. Twice ceftin cleared those symptoms but they returned after my antibiotics were gone. I don't have a diagnosis yet. My problems started jan. 2004. The last 3 months my symptoms have gotten worse with muscle wasting, fasiculations, cramping in hands and feet, and stiff thighs. Doctor said lyme disease test is negative but I believe I have lyme and now it has developed into als. I have an appointment in a neuromuscular clinic next month. I believe the only reason I am still mobile is because of the glyconutrients I am taking and the diet I am on which consists of water and green tea to drink. I eat chicken, fish, lots of green vegetables, and some berries. No sugar, rice, potatoes.

richard199
05-06-2006, 11:04 AM
Hi Upila,

Just wanted to check in to see how you and your dad are doing.

How is the treatment fo lyme disease going?

Hope all is well.

Richard

175
05-09-2006, 04:03 PM
Hi Richard,
Thanks for thinking of us.
It has been a hard month and we are just about out of our minds.
Father has been up and down, with days of horrific weakness followed by back to "normal" to weakness again. His speech has deteriroated just like that, then after he has a good meal (especially smoked/oily salmon & rich dessert) his speech clears completely. He is suddenly scared - the symptoms are erratic, for couple of days he barely walked. He stoped the Samento and the silver, just to see if this was a herx or what. Each time he stoped, he had these ups and downs, so now we are completely at a loss. The food/speech connection is so obvious, that I now think he is hypoglacemic and will call to see what doctor to talk to (we have none and in our immediate area they are so bad that should be behind bars). He will be seeing another doctor, just to see what he has to say and we have to decide what to do. I have to say, it is very discouraging at this moment. And it happened just out of no where.

Which brings a question for anyone on the forum who can reply from experience:

Can als symptoms of deterioration be experienced LITERALLY by the hour/day?

I have to sort this out. It has been so scary and so difficult, I could not bring myself to post...

155
05-09-2006, 09:05 PM
Hi Upila,
I am bummed to hear that your dad is not improving. I have been wondering how the two of you have been. I check the Lyme forum every once in a while to see if you have posted and to see how your dad is doing. Dad's symptoms never seemed to change by the hour or minute, but things did seem to progress differently day by day. Some days it would seem like he was speaking really well, and then other days his speech was horrible. When his breathing began to decline, it was definately noticable each day. I think fear plays in when they see themselves getting worse. I think dad has been scared to see how far this disease is going to go before he passes away. I also think that he is afraid to leave us behind. I don't think he is scared to die, but scared knowing that he will be leaving my mom a widow. It is so tough to think about things like that. I hope that the whole Lyme thing works out more in your favor. I would wish Lyme disease on anyone before ALS. Good luck and do continue to post here every once in a while. I would like to keep you and your dad in my prayers and know how you are both doing.
Dana

71
05-09-2006, 10:50 PM
Hi Upila. From what I have read and experienced the symptoms don't go for a crap in hours or even a day that you would really notice. I have had times when one day I can work a cork screw and the next day I can't. 2 days later I can work it. Haven't been able to work a can opener for quite a while but am not a fan of canned food anyway so it wasn't a big loss. I used a skill saw last week but I had trouble holding the switch in. I could hold the weight of the saw but my finger wouldn't stay on the switch for the whole time. This disease is just plain weird. There is no telling where it will take you. Day to day is about the only advice I can give.

182
05-10-2006, 07:25 AM
Dear Upila,
I can hear the frustration in your words, and just wanted to let you know that I am thinking about you and your Dad. Like Al says, this disease is so unpredictable. We really have to try to live day to day, but that sometimes is easier said than done.
I have no great answers to your questions but just wanted you to know that you are not alone, I pray that your father's symptoms will level out.
You are such a wonderful son to your father, you care so much!
Hugs and prayers, Leah

175
05-10-2006, 07:46 AM
Thank you each and every one for being there!

Dana, I hope your father has stabilized. The thing with my father is, that he does not have any breathing problems; on the contrary - after at least 3 years of not being able to sleep, because could not breath at night - now all of a sudden, since 4-5 months he sleeps just fine. Before that, he even changed the flooring to hardwood everywhere, beds, mattresses - you know, the whole thing - and could not breath still. According to the Lyme "thing," this would be one of the symptoms. So, what caused him to breath now? Totally frustrated.

293
10-05-2009, 04:58 PM
I just found this thread today and see that the last entry was in April of 2006! My husband was also diagnosed with ALS/Lyme and I feel that his experiences could possibly be helpful. Is anyone still interested in this topic?

kristine9724
10-09-2009, 09:24 AM
I am.
My dad was finally Dx'd with ALS after they ruled everything else out. He's going downhill VERY fast.
Speaking with my Mother last night, my Aunts are telling her it's probably just Lymes, etc. Part of me is upset that they are so dismissive and they don't have medical degrees, etc. The neurologist was dismissive of the Lymes when they asked about it in the same appointment they told my dad that he def has ALS. I guess from the reading I'm doing it depends on what camp you are in in the medical community.
So, my parents are on the internet and agressively seeking out how to get the other lymes test done as the standard one came back negative.
But even if Lymes comes back positive what does that mean exactly? Does the drug therapy really help?

7697
10-20-2009, 08:33 PM
Radaki-
I was diagnosed with ALS in December and chronic lyme in March. I have been on iv rocephin, etc. etc. for the last 4 months and I have basically stabilized. I am definitely interested in opening up this topci again!

1070
10-20-2009, 08:45 PM
varacara,
I was wondering how far your ALS/lymes disease has progressed. At what point in the disease did you begin iv rocefin? Interested.....

7697
10-22-2009, 06:09 PM
I began rocephin in May along with iv gluthione and methyl b12. I am currently under the care of an LLMD as well as a naturopath and following the Burrascano protocol for supplements. I definitely have more strength than I did 6 months ago, and on some days, more energy. My speech has not improved so far, but from what my doctors have said as well as from what I have researched, neurological lyme can take years to improve. I'm hopeful.

nancy8924
10-23-2009, 04:37 PM
I am a diagnosed ALS patient. I was just screened for an antibiotic trial (Ceftriaxone) and I'm waiting to hear if I can participate. I was tested for Lyme disease and the results were negative. People are so harsh on the ALS doctors it seems. Trust me, I know first hand how frustrating this disease is but if there was any special diet or any miracle thing that would slow this disease we would know by now and everyone would be on it. This disease has a mind of it's own. I chose to participate in the study because my personality is one that has to be pro-active in order to keep my spirits up and feel productive. I also want my kids to see me fighting and never giving up. I know for a fact if that my Dr. could change the fact that I have this cruel disease he would in a heartbeat. I am so thankful that he has dedicated his life into helping people with te disease and continuing to try to find a cure. They can't lie and tell you that they can keep this under control. We need to work together on this and I feel like the only way to do it is to forget about the crazy diets and costly supplements...get out there and participate in what the researchers are doing. They are our best chance.

Live today, love today, stay passionate and strong and appreciate the things you do have.....I wish everyone well : )