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.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
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.
posted
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:)
Posts: 184 | From taking pills | Registered: Oct 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
My husband also has symptoms of ALS. He started IV Rocephin last week. Already we are seeing improvement. Don't give up.
Posts: 305 | From United States | Registered: Nov 2011
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posted
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.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
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.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ditto what onbam said
tx lyme just to be sure
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!
Posts: 3792 | From around | Registered: Mar 2008
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posted
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.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
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.
Posts: 1302 | From USA | Registered: Dec 2002
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