Looks like at 36 I will be getting an ALS diagnosis within the next week or so. My left leg has started cramping up, my calf muscle is wasting away, huge dents out of the muscle. I of course am hoping for the best and still taking my antibiotics taking 1,000 MG of Ceftin, 500 MG of zithromax and nistatin.
I am not sure what to do next as I am losing weight pretty fast.
This whole thing started back in December 2005 and got better for years but now I am here and of course very scared. I just got laid off from my job cause I have been very ill. Things are not looking up for me right now. How does one apply for disability without a bad diagnosis?
Havinga Really Hard Day today.
Posted by glm1111 (Member # 16556) on :
I have a friend who was dx with HIV yrs ago. He is doing well today without meds. Whenever he started to go into wasting he ate tons of protein and it always pulled him out it.
For example, he would eat a huge steak etc and it always pulled him out of wasting. This is what worked for him.
Also look into treating parasites which can be considered a co-infection of Lyme and also overlooked by many LLMD. Do a google search for parasite symptoms.
Sending good thoughts and prayers your way,
Gael
Posted by Dogsandcats (Member # 28544) on :
It sounds like you should try disability. I am not quite sure how you can be laid off in California due to illness. Sounds iffy. My humble opinion only. Look links below. PM me if you have questions.
Don't write yourself off yet. Many people have been diagnosed and/or misdiagnosed with ALS. And there are other motor neuron diseases which mimic ALS. Continue with meds.Prayers:)
Posted by Tincup (Member # 5829) on :
Luke!!!
Good to see you! Sorry to hear your muscles are having problems. Mine are too.
I feel the dents in the muscles like you are and am using MSM cream in an attempt to repair them. It seems to be helping some, but I don't use it as often as I should.
One thing I do know, there are many ups and downs with Lyme, and this place you are at now will improve. It may be a crazy ride and rough in spots, but hang in there and know you will come to a better place.
Otay?
Posted by lpkayak (Member # 5230) on :
please remember there is a link between statins and als
there are some supp protocols to help
start at spacedocs.com and ask me for names of 3 books if you want them
Posted by lyme-o (Member # 35115) on :
My husband also has symptoms of ALS. He started IV Rocephin last week. Already we are seeing improvement. Don't give up.
Posted by aperture (Member # 34822) on :
When you apply for Disability be sure to mention every last problem you are having. Be extremely detailed. Also, be sure to be extremely detailed about the total extent that your illness, or combination of impairments affects your ability to function in all areas.
Posted by Dogsandcats (Member # 28544) on :
as aperture said, list everything. For SSDI You can find lists of symptoms that will refresh your memory. Maybe something you have that comes and go. You want to be honest, but also complete.
And always, they do not want to know what you CAN do...
Only what you CAN'T do.
If it is state disability, that is different. Hope the links above helped.
Posted by jackie51 (Member # 14233) on :
tx lyme just to be sure
Posted by Rumigirl (Member # 15091) on :
There is a clinic in CO that specializes in treating people who haver Lyme plus an ALS diagnosis. PM me, if you want the info.
YOu probably need IV and the best LLMD you can afford. But the above place would be best if you do get that diagnosis. Lyme is treated differently in ALS patients (has to be aggressively enough, but not too aggressive).
Keep fighting!
Posted by 2young2dieMom (Member # 25434) on :
If you had ALS you wouldn't have gotten better for years. Its a progressive disease but it can go slowly at times. I know. I was dxd with ALS two years ago and have been taking antibiotics ever since. The only thing that really stopped the paralysis spreading was iv ceftriaxone (generic rocephin).
I just started a low dose of doryx, which is a time release doxycycline and initially my legs seemed to get stronger. My arms are weaker however.
Posted by Marz (Member # 3446) on :
Maybe the clinic in CO that Rummigirl mentions is the one that the MD in Under our skin practices at.
Have you watched UOS? I don't remember the doctor's name, but he was very, very weak with ALS symptoms and made a remarkable recovery after lyme treatment.
You can watch it on HULU.
Posted by Lymetoo (Member # 743) on :
Would you rather have this thread over in Medical??
![[Big Grin]](biggrin.gif)