NotALS!

I just started with an osteopath and he prescribed both s. boulardii and the yeast items you mentioned. Its a long road but I am alittle better.

Why were you taking antibiotics? Did you have an ALS dx originally?

HI, I read that you have C Diff, I had that in 2008 for 4 months. If you have questions let me know, I dont have an als dx but I suffered with c diff for over 4 months and was in the hospital 2x for over a week each time. I had iv flagy and vancomyocin. It turned into psdeuomembranous colotitis. So, the main thing that finally worked for me was brewers yeast, and the name was flora stor. I wish you the best, my c diff was from antibiotics as well, if you take the antibiotics you have take flora stor and lactobacillus the whole time.

Our house had a homestead put on so it is protected. We have what is called a Revocable Trust(includes myself and my beneficiaries which I no longer claim my husband). Everything goes into the trust upon death. I am the executor. Even life insurance beneficiary is changed to the trust. Our kids are in their teens so I also prepared in the event I died before my husband and named a trusted family member executor and make decisions on their behalf or in their best interest and upon what age I feel they could handle the responsibility of money with no advisement. My husband is not named in the trust so he has no access if I die first, although unlikely, still a possibility, so we still have money in joint account that he can access to ahndle affairs and food, clothes, etc. until the Trust goes into effect. i now carry life insurance witht he trust named as benenficiary which would take care of all college needs- should I pass away, otherwise it's work as usual.

thanks Karin. I am depressed when my ALs symptoms seem to be worsening but happy and upbeat when I feel I'm getting better. I still think I have lyme which caused the muscle atrophy. I hope to get back on the rocephin soon. My gut is better now.

Hi there- I know how very frustrating this whole process of getting a right diagnoses. I've gone from 2nd stage heart failure to ear problems, a possible stroke to ALS to MG to Upper GI back to ALS and now they say arthritis and osteoarthritis with possible ALS or MG on the back burned as they are unable to diagnose the progressive sypmtoms of Bulbar and arm and hand weakness. Don't give up yet sweetie. If you can get some treatment, I don't know what the prognose is for Lyme's disease is but attempting suicide just adds more to your difficulty. Then they label you depressed and for whatever reason decide all your symptoms are questioned. For some reason the medical profession just doesn't understand the frustration. Hang in- blessings Karin

The first symptom I noticed was weakness in my left arm. Within a year, it spread to my right arm. Then my shoulders were visibly atrophied. That's when the neuro dxd ALS using an MRI and EMG. Its a progressive illness. I noticed alot of twitching in my face but not much in my arms.

I never tested positive for lyme but all of the symptoms were there. I'm taking alot of antibiotics and getting sick. My picc line was just taken out because I deveoped at staph infection. I wonder if all this trouble is worth it. I just want my life back!

Hi!! When you posted on my thread yesterday you mentioned you were diagnosed with ALS Graves Disease years ago. Did one of the two cause the other? Is that something that is common. I finally got a referral to a neurologist. I havent been tested for Lyme disease but I will mention it to them. I wont be able to get into the neurologist until February. Im so worried about this I cant stand it. I shake all over all the time. I can still pick up my daughter but sometimes its hard. Someone told me to do 20 kneebends and if I could do that without falling I probably dont have ALS. I can do it but my legs were jerking most of the day after. Im so sick of this!! I cant stand the feeling of fear. Im sorry to hear of your diagnosis. How long have you had this? What were your first symptoms? Did you shake or tremble???

Hi, NOTALS,
Thanks for your answer. Things about treatment of LYME/ALS is not like in the USA. Doctors don't have enough information about LYME. Now we will try to persuade our doctor for cathether placement. I don't believe that my husband has ALS.he is too young just 39.
His swallowing and breathing capacity is better,but weakness in his legs-arms continues. He has difficulty while he is walking, so slow and gets tired easily.
His disease started with speech problems.
What about yours ?

It can take years on rocephin to get better. I'm hoping to stay on it for at least 2 years, maybe 3. I have a picc line in my arm. I have muscle atrophy but I think I'm gaining some strength. I've been on the drug for 6 months now. Some days I almost feel normal.

Hi notals,
I ve had rocephin injections for 1.5 months- ( 1 mg / day for ten days then 10 days break and 10 days injections again)It's been 30 injections up to now. My first FVC was 80 after the diognasis , it's 97 now. I have still balance problems, weakness in my left hand , slow speech ,difficulty in walking . I want to go on having rocephin .
Do you use pills or injections? ( sorry for my english)
Bye

I take 2g of ceftriaxone iv once per day. I used a slow iv drip because I'm allergic and get a rash if I go too fast. I've been on it for about 4 months. I also take milk thistle for liver support and urisodol to prevent gall stones. Nutritionally, I drink Kefir (buttermilk) to combat yeast, B12, calcium and ledum.

Hello could you tell me how many IV ceftriaxone a month you should take to trait lyme/als, please and how long does?
While about the IV drip is 250cc or more and with just ceftriaxone 2 gr. or something else to protect the bowel, please?

I'm a new member so I hope I'm posting this question correctly. I was dxd with ALS few months ago but have been on ceftriaxone and am feeling much better. I've regained strength in my legs, swallowing has much improved but the muscle atrophy in my shoulders is about the same. Does this mean I don't have ALS? I'm afraid to go back to a nuero. Has anyone else gotten better on antibiotics and then relapsed?