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Old 04-09-2011, 09:02 PM #1 (permalink)
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Default Could this by Lyme or slowly progressing ALS?

I was diagnosed a year ago with ALS. Since then, I have been on ceftrixone for 10 months until I developed c difficile. I am currently taking flagyl.

My strength came back dramatically while on the ceftriaxone. After stopping it, I became extremely weak. I also have positively responded to Ledum and oral flagyl. Many symptoms improved with other oral drugs too.

I seem to have lyme which has caused ALS symptoms. I'm hoping to continue to improve. I just wanted to let those that encouraged me along the way know that I am doing better and to thank you for your concern.

God bless you all.
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Old 04-09-2011, 10:38 PM #2 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

You just made my day. I am so pleased that you are improving on the meds. We do not have lyme disease in our country, therefore I know nothing about it except it is a great mimicker. Congrats
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Old 04-19-2011, 07:11 PM #3 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

Someone else suggested lyme disease to me.. I'll ask my doc to test me if there's a test..
I went to the grocery yesterday and bought three small items..It felt like I was dragging my brother through the store..screaming and kicking too! OK..I exaggerated a little, but everything is heavy now days..even my own skin... Jeeez.I've even quite literally thought of cutting my hair off to make my head lighter..
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Old 04-20-2011, 04:04 PM #4 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

I've considered shaving my head. Its so hard to lift my arms up in the shower to wash my hair!
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Old 04-20-2011, 06:04 PM #5 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

Are you back on abx now?
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Old 04-20-2011, 06:29 PM #6 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

As long as you are not like Samson and lose all the strength you have left. Hope you are still doing well.
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Old 04-21-2011, 03:30 AM #7 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

I am just wondering why NotALS was put on ceftrixone if he was diagnosed ALS.Is that normal?
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Old 04-21-2011, 02:59 PM #8 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

notALS, I'm glad you are doing better.
I pursued the Lyme possibility, hopefully, for some time after diagnosis, and eventually gave up because the picture (clinical, tests, history) just didn't fit. My primary dr, our family doc for 20 years, was willing to refer me to a Lyme specialist if I wanted to go that route but did not recommend it, and she is a very open-minded Dr and would love for this not to be ALS. Now a family member, well-meaning but ..., comes along and says "I bet you have Lyme", which of course opens up that box in the back of my head, even though I was very comfortable with my carefully considered decision.
My question to you, notALS, is: do you know of good documentation of people diagnosed with ALS who have been treated for Lyme and recovered (not just done better while they are on the IV antibiotics)?
Thanks, and keep the faith.
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Old 05-21-2011, 11:59 PM #9 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

Yes, there are numerous stories of people diagnosed with ALS that respond to medication. Have you heard for Dr Martz? I am going to his clinic in CO and also to an osteopath locally. I never tested positive for lyme or any coinfections but I have all the clinical symptoms: atrophy, progessive weakness, burning skin, ear ringing, periodic fevers, flushing, total numbness in my face, hands and feet.

I was prescribed rocephin ( generic is ceftriaxone) by a lyme doctor in NY. He uses it to treat neuro lyme and it is being tested for ALS now since it seems to slow down the atrophy. I felt great while taking it, I even got stronger. Unfortunately, I developed c.diff so I'm off all meds now until that resolves.

I hope I will respond to oral drugs when I am able resume treatment. I am so weak and tired now. I would try a lyme doctor, what can it hurt? If you feel you are getting worse, just stop the drugs.
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Old 06-17-2011, 11:17 PM #10 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

My c.diff has cleared and I'm now taking azithromycin. I'm on a very low dose but it gives me more energy. I'm also taking numerous supplements.

I was just tested for heavy metals and am very high in lead and mercury so I'm working on that too. Since my legs have gotten weaker and I've had some choking episodes this month, my doc wants to put me back on more abx. I'm hoping for improvement again, this time without an iv.
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Old 06-18-2011, 08:58 AM #11 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

there is a very accurate test for Lyme disease that is done out of a lab in California. My dad had to purchase the test because it wasn't covered by the canadian government. I believe it was called the Western Blot test.
Because my dad was a forest fireman and worked with the ministry of natural resources for years there was a great possibility that he had been exposed to Lyme. Unfortunately it was not the case but it is a very good thing to rule out because Lyme is treatable and people recover from it all the time.
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Old 06-18-2011, 10:53 AM #12 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

Please people, before you go through any lyme disease treatments--please read this article and do a little research. Unproved Lyme Disease Tests Prompt Warnings - New York Times

There are companies out there that will take advantage of people--it happens every day. Long courses of antibiotics can be harmful--so at least research where these Lyme docs send out for your labs.

Lyme disease usually produces a very distinctive bulls eye rash--while it could be hidden in the hair and not noticed--again--be careful. There are a lot of mimics for ALS--many treatable--just don't get suckered in to a treatment that may ultimately more harmful than beneficial.

I looked into Lyme--because I have such a wild host of things that don't fit the ALS the neuro suspects--but stick with the standard FDA approved tests for the disease.

Most people would notice an engorged tick on their bodies. I lived in the country--found ticks on myself more times than I can count--but there is no way I'm paying some grifter doc or lab to 'treat' Lyme disease unless some approved by the Govt. test shows I have it.

The CDC website has some interesting information on Lyme disease.
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Old 06-18-2011, 11:12 AM #13 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

The Western Blot test is the ONLY somewhat reliable test for lyme, and it also depends on the lab that you use. Make sure you find a "Lyme Literate" doctor and have this test run. I also thought that this was what was wrong with me, and after numerous blood tests (don't even bother letting them send you for the ELISA test, it's a waste of blood and money), a spinal, and FINALLY got them to give me the Western Blot, which still came back negative, I accepted the fact that it's "probably" not lyme.

I read in this book about Lyme that the best way to get prepared for the Western Blot test is to go on antibiotics for a month and get tested. And, if your symptoms actually get worse in that month, (herx) its probably a good indicator that the anitbiotic is killing the boreoullis (sp?) and the WB test will pick it up. I can't remember the name of the book, but if you PM me, I'll go upstairs (always a treat to walk/pull myself up those 16 steps) and will post it. It is well documented, and well written. A LL doctor will know what to do, that's why it's important to go to them, and not your PC doc or a neuro.

Good luck.

Oh, Chase, Lyme is very treatable when caught early... if it's not, it can take literally years of being on antibiotics to get well.
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Old 07-17-2011, 11:49 PM #14 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

I have never tested positive for lyme or coinfections. Muscle wasting and an abnormal EMG prompted my ALS diagnosed but that was after 10 years of lyme symptoms that I atributed to other things.

Now my T cells are very low and the dr suspects AIDS or cancer. ALS is still worse than those options. With my luck, it will be all three. I guess when your number is up its really up.
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Old 08-05-2011, 09:48 PM #15 (permalink)
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Default re: Could this by Lyme or slowly progressing ALS?

This story is very much similar to my story. 3 years ago my Mother was diagnosed with ALS and it was tragic, but the doctor Said it was a very slow progression. She is 51 and got married late so she has my sister, 17 and me, 14. She is using a walker and it looks like she is doing fine until tragedy struck and all in 1 month my mothers mom passes away, my 10 year old cousin is diagnosed with leukemia, and mom is diagnosed with breast cancer. Things are ver rough for out whole family. I'm just sad because I know my mom only has a few years left q d most likely won't be able to even see me graduate highschool let alone get married. I love my Mom to the fullest but I look at her and see her so defenseless and I can't handle it. She is an amazing person but she didn't deserve this and neither did anyone else who has this disease. I just would like people to pray for her and I will pray for you or your loved one.
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