ALS evaluation for muscle atrophy.

Hi Sf Charm!
Welcome to our community!!
Although you are far from being "new" to Lyme, I hope you take the time to go through our "New to Lyme? Start here!" thread. It's packed with important information, symptom lists, detoxing suggestions and more.

I would say it's more likely it's from a Lyme infection that hasn't been completely treated - you still have an active infection is why you are still experiencing symptoms- especially since ALS has been ruled out several times now.

Some of us take a lot to heal and there are so many thing to consider when we are trying to heal - the body has to be balanced out in regards to all the bodily functions in order to do battle with these bacteria - or we just don't heal, especially if the person has a long standing infection.

I would encourage you to find a LLMD and get back into treatments. There has been some remarkable improvements to treatments and protocol choices in the last couple of years that you could take advantage.

If you need to find a LLMD in your area, we can help with that. You can start a new thread (or change the title on this one) titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelop under my screen name. I may have contact information for some LLMD's in your area as well.​
​Please include your state and area that you would like to find a LLMD in and I will see how close I can get.​


You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

​ You can also now email TBDA (Tick Borne Disease Alliance) at [email protected]​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

sf charm were you originally treated for Lyme in the Bay Area?

If not there are 3 or 4 really top notch LLMD's close to San Fransisco.

One is the brother and Chairman (?) of iGeneX. You can google that. I go to that practice. There is another that is listed as being in Mountain View but she actually sees patients in San Fransisco.
There was a piece done on the local ABC news in August on the Author Amy Tan. She has had Lyme for 15 years. Her doctor was with her and he is very well known. http://abc7news.com/health/beyond-the-headlines-lyme-disease/242626/

I was treated in San Francisco by a Dr. who treats lyme. She has since moved out of the bay area. She was in with a Dr. who treats Amy Tan and I'm aware of her struggles with lyme. We used to have a support group here in the Bay area but it has since folded..

With regard to the muscle loss, I have no weakness.. I have no difficulty walking, doing the elliptical.. However to look at my ankles, I have lost muscle around both, it is very obvious. I was evaluated and told that we should have a teaspoon of muscle around each ankle, mine is gone.

I have seen many doctors and none are as worried as me. It's my body and I see how it is now starting in my hands around the thumbs. This however could be because of three neck surgeries. I was told this by my neurosurgeon.

I see the neuromuscular Dr. on Tuesday who specializes in ALS. I was told back in 2006 by this same Dr. I didn't have it, but had no atrophy of muscle at the time. What I have on my side here is no weakness and it was just ruled out at UCSF medical center's neurology dept. This is more or less a 2nd opinion.

I have a very strong feeling it's all lyme related. Either by the disease itself or the antibiotics used to treat it. Again, it's just my opinion. I treated aggressively with oral antibiotics for a year, six months of bicillin shots 2.4 mg, and one full year of Rocephin IV.

Post Edited (sf charm) : 11/8/2014 4:07:22 PM (GMT-7)

SFCharm, I am really interested in hearing more about what you are going through and the treatments you receive. My husband has muscle atrophy in his arms, shoulders and chest due to ALS and Lyme. He cannot use his hands either. Before his head injury, he was having a bit of a problem with balance and now even more so. He tested positive thru Igenex for Lyme and diagnosed by two neurologists for ALS.

I was born and raised in SF and my husband is also from the Bay Area. We live near Portland, Oregon, but there aren't any LLMD's in the area. If I there is a really good one in or near SF, maybe we could go down there for treatment. His brain injury has made it all the more difficult. I would love to hear how your treatment goes even if the muscle atrophy is caused by something else. I just see them as symptoms anyway. You can write to me if you would like by clicking on my name to get to my profile and email address.

I was undx with L/co for 14+ yrs, finally pinpointed all the issues myself last year, and got an IgeneX test, which was positive. Treated with natural items/protocol for first 6 months, switched to abx for 6 months, and now off everything, waiting to see a new Master Herbalist this Sat.

I've determined I must first feed/detox/strengthen my vessel for many months in order to start the 'restart' buttons on all the systems. *Thanks Traveler!! Then, after I am better fortified, I will begin hitting things with adding a fined tuned herbal protocol.

Now, all that being said, within the past seven years my body has been slowly losing muscle mass. This wasn't realized until most recently. After telling many dr's over the years of severe issues and pain, I was finally ok'd for mri's last month. I have seven bulging discs in my neck and lower back, both knees have torn meniscus and bones are moving around, and I have other major organ issues.

My heart will be address with a second cardio dr tomorrow. I am as prepared as possible with my history, his credential and specialties (So I have points to 'connect myself to him on a personal level' and help me be seen as a 'real person', we graduated the same Undergrad College!), my test results and info regarding my confirmed Bartonella and the confirmed studies that Bartonella damages the heart. This could help him in hte right direction.

I now have connected the dots and realize all of this is due to the muscle loss. My spine in literally losing it's ability to stay upright. My knees are no longer able to contain the weight of my body, and the interior is wasting away, thus tearing. I lost my uterus in 2006 due to loss of internal muscle capability. I understand all of this now. I have been confused for years as to what could be happening. Eight yrs ago I had been as strong, healthy and energized as a though a 20 yr old. Now, I am almost bedridden. I'm only 53.

I would have liked being better aware of this possibility of wasting muscle mass years ago, in order to have pushed myself a bit more in beginning and maintaining some consistent form of gentle muscle toning. It's not too late, but I have a lot of other challenges to meet prior to starting on anything now, as I need professional guidance in PT, in order to do no further damage.

Lyme/co has so many layers that have so many possibilities in how the individual bodies/systems are affected. It's a puzzle, each a very personal puzzle, that we all deal with as we realize we have to understand the Whole, our unique Individual Whole, in order to understand the individual puzzle pieces needed to get clarity, thus clearer direction. Every Lyme path is its own, beginning to end.

That's why this site is paramount to my gaining knowedge, direction, confidence, support and hope.

I am on my road to gaining my better Me.... sooner than later.

I pray we all continue gaining clearer understanding of our own unique path and needs.
And that we get all the help we so desperately need.
God/Universe/Love speed to each of us and those who support us on our jouneys.

Oh, and the smaller joints, fingers/wrists/ankles... they don't swell, not something that happens in my body until something is so frail it breaks or rips. Then the swelling begins. But, no swelling doesn't mean damage isn't presently occuring. Because it certainly is happening. Our bodies often don't hold true to the 'text book' presenting forms.... mine doesn't and that adds just one more layer of challenge/frustration.

My fingers are now starting to literally move sideways, cracking, if I pick something up with a bit of weight to it, and my fingers either start moving, or I drop it. I drop things often like papers, eating utensils, etc. Holding heavy dishes is not wise.

Muscle loss is real. I hope others research this, listen to their bodies, and add strengthening in order to keep this at bay if possible. Even light weight strengthening could be beneficial, but please always consult a professional, as I am not, and I am only suggestion awareness so we can be better informed and proactive in our health choices.

Thank you, Trav and Girlie. I am honored to know each of you!!

The more I learn, the clearer all of this is becomig to me.
I honor the times I am lucid. Usually after a storm, so now
I am learning to anticipate the good that will come when
I'm in the darkest places of hell.

I'm amazed at how this illness touches on every part of the Whole Person:

Body
Mind
Spirit

And, each part is an Individual, Unique System in Its Own right.

System: 1. A group of interacting, interrelated, or interdependent elements forming a complex whole, especially.
2. An organism as a whole, especially with regard to its vital processes or functions.


And then, each of these Systems are then yet broken down even into smaller systems that touch all the others.

This Fact is paramount in understanding how to move foreward in treatment.

I've finally come back around with trial and error under my belt, to my Reality:

I must treat my Vessel, my Body first, in finding the right nutrients needed via a professional, in my case, I'm seeing a Master Herbalist. I will learn how and what my Body/Vessel needs in order to grow stronger and start to have my taxed organs/cells become ready to start re-setting themselves.

*Diet, Supplements, Exercise, Modalities, massage, etc. Things I can do to help my body as a Whole. Things like self manual lymph node massage via youtube, as not all things cost money if I can find another way.
My addrenals/hormones need to heal, so rest is a top priority. No matter what. I must take time to rest my body, my mind, and my Spirit.

I acknowledge and accept this will take time. Maybe six months, or maybe longer. But, if I want to heal and fight these illnesses, then I must come from a stronger place as a Whole. I must feed my body what it desperately needs.

I will do all of the above while tending to the damaged flesh; my heart, my knees; my back, etc. This too will take time, patience, self-acceptance of my now mounting limitations, and self-love. Yet another part of this equation. An important core part. I have to believe I am worth all of this.

And, even before I can start seriously attacking the critters with a natural protocol, I am facing head on my EMotional/Spiritual/Relational life. What a challenge, what a joy, what an eye opening, heart healing experience. The gains far outway the losses, by a landslide, but it didn't feel nor look like it as I was going through each weed that was eradicated from my Life Garden of ME. Looking back I am in awe of what Authenticity Looks Like. I am in awe and humbled by True LOVE.

So yes, I am growing and learning and changing, my inside me.... so that my outside me will follow suit.
I so hope that we all gain understanding of where we are, where we want to be, and how to get there.

Connect your dots. Take up your armour. Succeed in your Path.

Hey, remind me, too, cause I know it will come around again, and again, until the end.

Be blessed. We have so much to offer, and it is US.

Yes, I agree, it does play a huge part in many people's body dealing with L/co.

I hope people begin to really talk about this issue more, and become aware of the possibility sooner than later, as sooner is better to start addressing it with safe exercise, or whatever they are led to consider.

I hope you get the help you need. Yes, you are too young to state/think/consider this is even remotely due to 'age' when one looks at the big picture.

Just wanted to add- sf charm - you were evaluated for ALS in 2006/07.
We'll, most people die in 2-5 years and you're at 8 years? And if they don't die within that time, they're usually in a wheelchair and not doing well.
It's been almost a year and a half, so I figure once I'm at two years with no noticeable worsening of weakness - then I'm going to breathe easy and take ALS off the table for good.

Yep! Me too!! I worry about a lot of people here too sometimes! I do try to tell people about this site - not because I'm a Mod here, but because of you all and the wonderful, caring support that you all provide to everyone who will accept it!