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I have now been taking Doxyferm for two months and stopped two days ago. It has all made things worse. I now have to swallow with my face bent down. I have a neuro appointment tomorrow again. I feel much weaker too and my upper lip keeps shrinking and the red areas are dissapearing. It is horrible. I am sure that this is the Ehrlichia eating away in my brain. It s just that there is nothing I can do to stop it. I went to an ear nose throat specialist who said that there was no risc in eating antibiotics and damaging the neuro functions in the throat. This really sucks. I do not want to be a part of this community, this is meant in a good way of course. I love the caring people here who have inspired hope and given their best tips.
 
Notme,

I have never heard of a test for bulbar ALS. I thought that was one of the difficult things about receiving an ALS diagnosis - no test available for sporadic ALS. When checking the Internet for a test, nothing can be found.
 
Notme,

I have never heard of a test for bulbar ALS. I thought that was one of the difficult things about receiving an ALS diagnosis - no test available for sporadic ALS. When checking the Internet for a test, nothing can be found.


Sorry--I should have been more specific--EMGs can be done -- even on that region. And, you're right, they can't diagnose it--but they can lead a competent neuro to interpret the results -- same as with the EMGs elsewhere.

(not me, lol, no one is sticking a needle in my tongue--nope--no way no how)

I WISH they'd come up with a definitive test! It would be great for a simple blood test that said "Yies or No"
 
I was told also that Lyme can lay dormant in adults until somthing triggers it.

That was why we persued answers to weather my father had Lyme for so long. Because he worked for the Ministry of natural resources and as a forrest fireman he had been exposed to tics many times but never got the caracteristic "bullseye" rash or anything.

His symptoms only appeared after a horrible viral infection that lasted months. After investigation and having done all the tests Lyme was ruled out but still I am glad we persued it so that we wouldn't be wondering about it.
 
Hi all, a friend was diagnosed with ALS a few weeks ago. I was and still in shock considering the odds of him getting this fatal disease. Since he gave me the devastating news 3 days ago, I have been researching and simply trying to help, i feel the need to do something. After some research, i have questions and concerns. He shared his report with me from the Neurologist and after researching and seeing the info regarding ALS and Lyme disease, it caught my attention that it states in the neurologist's report that he tested positive for Lyme IgG. Is Lyme IgG the same as Lyme disease? If so, why was he not prescribed meds to treat the Lyme disease? His symptoms are weakness & numbness in hands, difficulty walking up and downstairs and balance issues. I'm not sure what other info is needed to offer advice/suggestions for my friend. Please let me know your thoughts re: the pos testing of lyme IgG and let me know what other information I can provide that may be helpful.

I thank you in advance.
 
ILuvNY

Lyme is notoriously hard to diagnose. He should also have the Western Blot test if the first came back positive (false positives on this test are common) The Western blot is a better test.

Just be careful what you tell your friend--well-meaning friends can make the diagnosis and grief process even harder on those with ALS when they try to convince them something else is wrong with them.

ALS is only diagnosed when all other possible causes have been ruled out. Your friend can get a lot of support here--but, if his EMG showed the things seen in ALS--it'd be best for him to ask his neuro if Lyme is a possible consideration over the ALS.
 
I don't think that you can get ALS from a tick....

Someone seems quite confused here.
 
I don't think it is common practice to scan for Lyme. I don't remember it even being mentioned.
I have spent a fair amount on time in campgrounds , but once again never encountered the bulls eye rash.
And have been told it's hard not to realize you have been bit.
I am also under the understanding that by the time notable muscle weakness has been caused by Lyme there is not that much that can be done and the is still speculation (unproven either way) that it may proceed to ALS ..
 
An important note about vector bourne diseases, they can be sexually transmitted. The lyme spirochete is a close cousin to syphillis and is suspected to transfer between partners.

We are all exposed to bug bites and infections our whole lives. I think genetics determine which infections trigger ALS or any autoimmune disease as a result. My husband has had chronic fatigue syndrome for years so I have been exposed to whatever he has in addition to the numerous insect bites I've encountered throughout my life.

I"m still taking ceftriaxone although my white blood cell count is sinking. I tried adding other antibiotics but developed C.Difficile so now I need to take care of that. It is a long road either way, if you treat Lyme or not.

This one scares me, but just for a moment. If Tom's trouble, ALS or ALS like lyme is from vector bourne disease and it is catchy, then maybe that is why I now sport a lovely auto immune disease rash. Tom has been going for 10+ years, shrinking daily, refusing to accept ALS diagnosis. The doctors have entertained him with IVIG, antibiotics regimen and even the lyme Dr. now says, sorry, ALS. I do not have time to think about "what if it is catchy?" I have decided that my own body is my own trouble, that I get things like erythema nodosum and long term skin rashes because of allergy to my world etc. I don't think I could deal with it if it were a contagion that was overlooked. Even so, so what? We are in the mess we are in, and moving forward in whatever way possible is really the only option. Short or long, I am here now, Tom is here now and we are going to have the best time possible, damn it!
Lyme, leptospyrosis, ALS, cancer, CFS, heart disease, old age -- nothing on this earth is here forever and these are some of the things that plague humankind. Even the rocks are eroding to become sand, all water is flowing over the earth to turn to salt water.
I choose to accept that life is not fair, I do the best with the cards that I have been dealt, and my children will hopefully live long and well. I feel fortunate for the lessons I am learning, especially about the strength that lies within.
 
Notme...thanks for your response. I have not shared with him most of my research because I did not want to give him false hope. I did suggest he see a LLMD and request the western blot. It seems like compare to my research that he was diagnosed quickly. I read where it often takes months to diagnose ALS but he was diagnosed after EMG and NCS indicated motor dysfunction and other blood work came back neg EXCEPT Lyme IIG. Before he readily accepts this diagnosis, of course he should look at the other possible immune diseases that mimic ALS. When he is ready, I will suggest he joins the forum for support and info. Thank you!
 
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