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» LymeNet Flash » Questions and Discussion » Medical Questions » ALS? LYME? WILL I GET BETTER? HELP?

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Author Topic: ALS? LYME? WILL I GET BETTER? HELP?
buckypas
Junior Member
Member # 51996

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I have been experiencing symptoms for almost 9 months. It started with visual changes then head aches.

After that progressed I started twitching right after my first bout of abx the twitching had never resoled and has gotten worse. It remains constant in both my feet and happened ALL over my body. I have extremely hyper active reflexes, twitching of my tongue.

Most recently I can feel my left hand getting weaker and can see some muscle atrophy. I have all ALS symptoms plus lyme symptoms.

Muscle pain
neck pain
head aches
vision disturbance (floaters, waves, light sensitivity)

random chest pains
slight drop on my right eye
clonus in both ankels
numbness on my left leg( comes and goes)
pins and needles all over

legs and arms fall asleep so often (mored so when im sleeping I have to wake up and shake it out)
memory issues

hearing sensitively and ringing
twitching every where all the time
dizziness

weight loss
burning spine
awful balance
hand tremors
vibrating

I have been tested 3-4 times. Positive ELISA test every time negative western blot with a positive 41 band. I have been on abx for 6 months and haven't see anything change. I tried doxy but now im on cefuroxime (500mgx2) sulfameth (800-160tabx2) and Atovaquone(250x2).

I have seen minimal improvement the only thing that has resolved is my dizziness and night sweats. I dont have much joint pain really.

I am worried that my lyme is just becoming ALS. It plagues my thoughts. Especially since the muscle wasting in my hand has started. I have gone to every specialist you can imagine.

I feel so alone and I just want help. I am hopefully starting IV rocephin by the end of September but isn't covered by insurance. I am losing hope can someone please give me some words of wisdom anything that can help me PLEASE.

(breaking up the post for easier reading for many here)

[ 09-06-2019, 07:29 PM: Message edited by: Robin123 ]

Posts: 6 | From lagrangeville New York | Registered: Sep 2019  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Welcome to Lymenet!

So sorry you are going through this. Are you under the care of a Lyme-literate doctor(LLMD)?

If not, then you need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Link for NYC Lyme Support Group:

http://www.nyclymesupport.org/

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help. They would know better about NY.

Some more resources for you (including Support Groups info):
http://whatislyme.com/lyme-in-new-york/

www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. View "Under Our Skin" and "Under Our Skin2: Emergence". Check your local library or buy them used on online.

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the "Edit Post" tab, make your changes, then click "Edit Post" at the bottom of your post. Thanks.

Posts: 8553 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Welcome to Lymenet buckypas

Here is a small sample of Lyme disease symptoms from Global Lyme Alliance;

http://globallymealliance.org/wp-content/uploads/2015/12/LymeSymptoms.pdf

Is your prescriping Doctor a Lyme Litterate Medical Doctor (LLMD) ? If not, then my suggestion to you would be to get an ILADS LLMD. (International Lyme and Associated Disease)
These doctors specialize in Vector Borne Illnesses. Your story of going to LOTS of doctors is the norm because regular doctors don't have a clue on how to treat Lyme disease.

Also, lab testing in highly flawed, missing up to 70% of Lyme diagnosises. IGenx is the preferred lab used by LLMD'S.

Most LLMD'S follow Dr B's Lyme protocol. Read and re-read. There's so much valuable information to absorb;

http://www.lymenet.org/BurrGuide200810.pdf

You are located in New York and there's many really good LLMD'S within 1 hour drive.

Also, Lyme takes a long time to get well. Atleast a full year.
It will be the hardest thing you will ever do. But you will do it.

Posts: 1797 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
LSG Scott
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you can get better with prayer and a good Lyme-literate doctor
good luck

--------------------
LSG Scott

Posts: 479 | From Boston, Cape Cod, Mass | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
buckypas
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I am currently being seen by Dr.C in ny. Apparently he is one of the best if you know who im talking about then you know. I am just overwhelmed and want my life back.

Im 25 and used to be full of life and now I am but a fraction of what I used to be

With the constant looming over my head that the end is near. Its awful.

Posts: 6 | From lagrangeville New York | Registered: Sep 2019  |  IP: Logged | Report this post to a Moderator
nefferdun
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Ask your doctor about the newest treatment - Disulfiram. There are a lot of doctors that hope it might be a cure. It is not an antibiotic so it will not kill the good flora in your gut.

If you were positive, then you have Lyme for sure. You can get better when you get the right treatment. The co-infections are just as difficult, and bartonella causes muscle twitching and tremors. They do not know if the Disulfiram attacks the bartonella.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4666 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Robin123
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Thx for coming here - welcome! We know how you feel! Most of us have been in a similar situation. And no, you are not alone - so many people are going through this very unwanted situation!

Next, there is hope for you! Treatment can turn it around. Best to know what we're treating. Has anyone told you what your infections are, including co-infections? The ELISA test is a positive Lyme test. Sounds like Lyme and bartonella to me.

Next, it's an exploration to see what's going to work for us. Everyone of us is different in our genetics and what illnesses and strains we have. So we have to find out what works. The goal is to be able to reduce our symptoms so that we can function again. Many people have been in the place you're in and gotten better.

Re ALS symptoms, there's a retired Lyme doctor, Dr David Martz, who got the ALS symptoms of Lyme. He got treated with abx and got better. His story is written up in Pamela Weintraub's book, "Under Our Skin." I suggest you read it. He is in CO and could possibly be contacted.

So we try things for our symptoms. I drink mangosteen juice which stops all my eye symptoms. It's a strong antioxidant and scarfs up free radicals created by inflammation. I get it from the health food store and drink around an ounce a day.

A PEMF machine stopped my ear ringing for 6 hours and also took pain down to zero for awhile after the session. It boosts the electromagnetic energy of the body so it can start to work better. You could check around to see if any wholistic health practitioners have some version of it.

I take capsules of turmeric daily - it's an anti-inflammatory and takes down pain in my joints and muscles. I get the powder in bulk from the health food store and dip empty 00-size capsules in it. I take one in the am and pm.

Have no idea whether this would apply to your dizziness and balance issues. When my C1 vertebra goes out of place, I get those symptoms, plus more. A good chiropractor can check your spine out. When the bones are put back in place, symptoms go down very quickly. I mention the chiropractic treatment issue because our muscles can spasm and pull on the bones.

For muscles, magnesium can help relax them. We need to experiment to find out which magnesium we respond to. I remember a time when I tried magnesium citrate and my muscles practically went limp! The spasming muscles needed magnesium!

I can't comment on the abx because I can't take them. Others here can discuss your protocol, also your LLMD should know, and you can discuss with them.

You say you are 25. There's a funding site for young people through the age of 25. I suggest you look at this immediately and take action if it sounds like you fit the profile of grant applicants. They give up to 10K grants for individuals and 30K for families.

https://lymelightfoundation.org/grants/

Hang in there - you will get better eventually and get a lot of your life back but first you need to find what's going to work.

Posts: 12765 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Here are some links for financial help:

http://whatislyme.com/assistance/

http://www.lduc.org/lyme-disease-resources

https://sites.google.com/view/marylandlyme/help-for-you/financial-help

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kydd
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I had the same experience with the twitching. It started in my toes about 2 weeks after starting doxycycline and I still have it today over a year later, mostly in lower legs and feet but I can get it anywhere. It is mostly triggered by exertion/excercise. Its the main symptom I have remaining and it sucks because I can not run and have to limit gym.

--------------------
RUSSELL W FULLER

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Lymetoo
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There is GREAT HOPE for you! Just keep working on it with Dr C!!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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buckypas
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I am going to research all the financial help avenues today, The insurance company denied my IV treatment and im currently going to be on the phone with them all day to set up the appeal.

You guys are incredible thank you for giving me strength and confidence!!!

It is the best thing hat happened so far since this nightmare all started

Posts: 6 | From lagrangeville New York | Registered: Sep 2019  |  IP: Logged | Report this post to a Moderator
buckypas
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anyone have any suggestions for the muscle wasting its by far the scariest symptom besides the clonus i get in my ankles.
Posts: 6 | From lagrangeville New York | Registered: Sep 2019  |  IP: Logged | Report this post to a Moderator
lightfoot
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I just want to say, hang in there!!! I am in your corner and cheering you on! Best of luck and health!

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6118 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
buckypas
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quote:
Originally posted by lightfoot:
I just want to say, hang in there!!! I am in your corner and cheering you on! Best of luck and health!

Thank you so much i need all the support i can get
Posts: 6 | From lagrangeville New York | Registered: Sep 2019  |  IP: Logged | Report this post to a Moderator
Robin123
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Here's more funding info for you. Am thinking you could contact the relevant orgs for their next grant application deadlines.

https://www.lymedisease.org/lyme-treatment-grants/

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SDAR
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BUCKYPAS - I have had every symptom you listed over the last 3 years and after 4 Neurologist, not one new I had Lyme. I was diagnosed a year ago by IGenx Lab. My worst nightmare symptom is my walking/balance and now my speech with slurring.

I am trying to stay positive because most all of my symptoms have gone since treating for the last 10 months,,but the walking and balance are persistent and I see a great LLMD that keeps me filled with hope that it will get better.

If anyone else has these symptoms and has improved sharing your experience will give me more hope too!

Posts: 21 | From NH | Registered: Nov 2018  |  IP: Logged | Report this post to a Moderator
   

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