Mom diagnosed with ALS, being treated for Lyme (continuation)

If she isn't de-toxing enough, a herx will continue as the treatment that's hitting the bacteria continues, since a herx is the result of overloaded glands and organs that are trying to remove the toxic waste left behind.

Those all sound like herx type reactions.

Dwight Clark announced over the weekend he has ALS. He was a VERY famous San Francisco 49er during the 80's when the niner's were a dominant franchise. All I can think is "GET TESTED FOR LYME"!!!!!

Thanks for the response. The LLMD hasn't been all that helpful so far. He did send my sister an email today to check on the progress...we're waiting to hear back from him to see what he has to say.

I'm pushing her as much as I can to drink water. And she has been doing pretty good. I'm thinking about getting her a big water bottle and making sure she's drinking so many of them a day. Right now she is using a small cup, but it's hard to measure how much she's drinking with just that. I'm also going to get her some lemon juice or actual lemons to help with the detox. She's not really into the supplements that you guys suggested. My mom is a skeptical person really.

I am worried about her treatment I guess. Worried that this doctor doesn't know what he's doing. Maybe I have a hard time putting my trust into another doctor after receiving the ALS diagnosis when it really is Lyme disease. It's hard to trust that the doctor knows what he's doing, especially when it comes to my mom's life.

Traveler-You're right, you guys have told me that Band 23 = Lyme. I guess I just need the reassurance right now. Thank you!!

-Kari

We all need reassurance from time to time on these things, Kari! And I think it's safe to say that many of us are now a little leery of many doctors - I know I am!

Keep looking for things that you an get your mom to do to help her detox. What about an Epsom salt and peroxide foot soak? You can say that it helps with all kinds of things - as they do, but they are also a pretty gentle detox method.

There are plenty of foods that help detoxify the body too!

Cranberries (not the jellied version with sugar)
Avacados
Garlic
Broccoli
Cabbage
Beets
Make sure none of these are cooked to death an lost their nutrients.

Grapefruit, make sure it's not contraindicated with any of her meds.
Green tea
Kale
Tumeric

I'm getting more, hang on!

I've left off the more suspicious ones like wheatgrass and dandelion greens. Meaning she's likely going to balk at these.

I'm surprised Ginger wasn't on the list.

Be sure the nursing home is aware of limiting some of the foods that may produce yeast in her, particularly while she's on the antibiotics. That would be sugar first and foremost, and wheat products, especially those that use yeast in the making of it.
Usually the lyme diet goes much further, but for where she is at, this is probably the best you're going to be able to do.

Post Edited (julymorning) : 3/21/2017 12:34:00 PM (GMT-6)

Traveler - I completely forgot about the Epsom salt foot soak. I had told my mom about this but life is crazy right now, so I completely forgot. I'm willing to try anything especially something as simple as that!

July - I feel like I've heard of the apple cider thing. I will let her know that as well.

I would love to see her turn a corner as I said I am worried about her getting worse. Also curious as to what the LLMD will have to say - the last time we talked to him he said "it's too early to tell" but I don't think so. I don't have the best feeling about this guy, so I just hope and pray he knows what he's doing!!

-Kari

A good coinfecion and confirmation test is the dna connexion test ..its 500 $ ....12 bugs . No blood no doctor needed would be a good start to see coinfections ...
9So no im or iv rocephin? that would be the fast track ...also mindy goodin in co apring has had experience with als lyme as she trained under dave martzt ...she will talk on the phone ...monday thru weds

Kari, email me this dr.'s name, if it's the LLMD saying this(that he doesn't think it's Lyme). I'd like to see if he's on our list and if there are notes on it about reputation.

Psi, she's somewhat limited on treatment choice due to her Mom being in a nursing home. Plus, reportedly very reluctant to try new substances.

That's why we're trying to work within those parameters.



Kari, in case you didn't go back and read my complete edited detoxing foods list, here it is again.

Cranberries (not the jellied version with sugar)
Avacados
Garlic
Broccoli
Cabbage
Beets
Make sure none of these are cooked to death an lost their nutrients.

Grapefruit, make sure it's not contraindicated with any of her meds.
Green tea
Kale
Lemons (juice to water)
Tumeric

Hi Kari,

A few thoughts... I've read your original post as well to get caught up. I started to experience very similar symptoms to your mother in late summer/early fall of 2015 (time of the year is key here as Lyme is likely to be picked up during the summer and start to manifest in the fall). I never knew I was bitten or had the rash either. You can probably find some of my posts on this subject but really I started to experience a litany of symptoms that all came on in a matter of weeks to months and completely overwhelmed me - I thought I was dying. The most significant was muscle weakness, atrophy, hyper reflexes and fasciculations mainly in my left side (I'm also left handed). I probably had another 20 symptoms or so as well.

Not knowing anything about Lyme at the time I did my research and was nearly convinced I was on an ALS diagnosis path at 33 years old. I saw several neurologists who said they didn't think this was ALS but gave me no other possible diagnosis and just sent me home, which thankfully forced me to keep researching. The only other possibility I found was that it was Lyme manifesting as a mild form of ALS and all the other symptoms I've had after reading through days' worth of posts on this forum and many others pointed to Lyme (and coinfections). I then sought out an LLMD and my Lyme test only came back with several matching bands from Igenex, just like your moms. Doing coinfection tests was important because it turned up that I definitively had Babesia and Bartonella as well as a few minor things. That is an important step in the path to diagnosing Lyme because you can be nearly certain that if you have coinfections and several matching bands on the Lyme panel that you do in fact have Lyme - POSTIVELY without a doubt. So I would say without a doubt to get those done ASAP.

The taking deep breaths points to Babesia - I have had air hunger from mild to pretty debilitating at times and that is a Babesia symptom all the way. That completely cleared up after about 6 months of anti-malarials but when I stopped them it came back in a matter of weeks.

As for Lyme - I have been on abx for about a year. After 7-8 months or so of abx treatment with only mild improvement my LLMD recommended looking into BVT (bee venom therapy - you can find groups on facebook). I've been stinging with live bees for about 5 months and making sure I get into a sauna twice per week. I have seen the biggest improvement since I added those 2 treatments. It is important to detox and there is a TON of stuff about detoxing on here but ultimately I think just sweating it out is 100x better than other options - I've tried nearly everything and never felt as good as after a sauna visit.

To this day I still have many muscular symptoms although I feel about 80% improved overall. I have had all kinds of weird sensations that last from a few seconds to months at a time. Many including the twitching, cramping feelings, feelings of muscles 'crawling', tightening or pain or just weird sensations I can't describe. I've felt like something was eating my leg 24x7 for months on end, while I've also gotten feelings like little fire ants are eating the muscles in my hands. This usually preemts some weakness which gradually gets better and is constantly picking different parts of my body to attack.

As you mention in your original post you know this isn't classical ALS based on symptoms (which is very similar to my story) and so you were right to doubt the diagnosis. Also remember ALS is a diagnosis based on a presentation of symptoms and not necessarily a diagnosis of an actual disease process. It is still unknown what causes it - it could be many things and 1 could be bacterial infections such as Lyme. So actually getting that diagnosis is just a recognition of the symtoms - they haven't confirmed a thing, hence why there is not actual 'ALS' test they can run. Lots of people have been diagnosed ALS and recovered actually, so it's not a death sentence. If she can clear up the infection her body will heal and they will say she was "misdiagnosed". The neurologists are a joke and I wouldn't even consider visiting another, they will not help her. Do not accept that diagnosis and fight the Lyme that you know it is.

Tymetokilllyme- I cannot even tell you how much comfort it brought me to read your post. I read it to my mom and she cried. Definitely a lot of what you wrote, my mom has experienced. Everyone on here hS been so helpful and it definitely brings comfort to read such a similar story.

-Kari

Ttkl-Also, we have had the coinfection tests done and they were also negative. In my previous post I was told that those tests are even less reliable than the western blot.

We're basically going off of the Igm 23 being present and her symptoms as the confirmation to us that she has Lyme disease. I showed my sister your post and she instantly found something negative about it "mom had the coinfection tests done they were negative." Etc. this is why I wish we could see some sort of improvement just so we can all be on the same page. It's so frustrating!

-Kari