How old is your uncle, cane?
Posted by kimmie (Member # 25547) on :
That sucks! PM sent
Posted by glm1111 (Member # 16556) on :
Oh WOW, Sorry about your uncle. This really hits home for me since my mother passed away 20 yrs ago from ALS.
I am POSITIVE she had Lyme disease since she had soooo many of the symptoms. Unfortunately Lyme disease was not known about in 1989. ALS is just a name of a syndrome but the cause is unknown.
I really encourage you to send your uncle and his family all of the info about the common misdiagnosis of ALS instead of Lyme.
Gael
Posted by hadlyme (Member # 6364) on :
My Dad and his sister (my aunt) both had ALS. I feel they had lyme or some sort of vector borne disease that did bring on "als".
Now I have lyme & company.... and really see a connection to what lyme does to our bodies and then turning into als.
I have heard that DNA in families have to do with how it 'runs' in families. Left untreated, family members saddly will be diag. with ALS and MS instead of knowing and treating for lyme.
New studies all over are treating ALS patients with antibiotics, even if they aren't llmds. Nice to see.
Wish my dad would have been a part of this too, as he died 17 yrs ago.. but had the same type symptoms as I. I know he would be alive now if we had known to test and treat for lyme.
Posted by tamboski (Member # 23331) on :
those 3 letters make me sick even at the als clinic they told me they dont know what causes it or how to cure it and its dxd by exclusion
Posted by canefan17 (Member # 22149) on :
He's 55+ yrs old.
So without making it too complicated... if I helped him to treat Lyme with herbs and support the adrenals... he could see dramatic results?
I'm hesitant to tell him to get on rocephin (although i think it would benefit him greatly).
Posted by hadlyme (Member # 6364) on :
He needs the strong antibotics. Why be hesitant to tell him if it saves his life?
Herb and adrenal support is not the protocol for treating ALS with lyme treatment.
Think of it as a really late stage lyme and now lyme has taken one step deeper into his body...now it's turned into als because of the lyme damage.
Posted by Lymetoo (Member # 743) on :
I agree with hadlyme. He MAY not have to have IV, but he needs immediate abx to kill the spirochetes.
Posted by hadlyme (Member # 6364) on :
Google Lyme and ALS..... you will find a lot, and a lot of how it's treated.
Most LLMD's now know how the two are connected.
Your uncle needs to see a top LLMD... if he wants to live.
Wish my dad could have had this opportunity.
Posted by canefan17 (Member # 22149) on :
I agree. I need to get him to a LLMD soon, right?
Can someone give me a list of LLMD's close to Chicago?
Posted by hadlyme (Member # 6364) on :
If you get into the support groups in here, they will know one also.
Have him read online about lyme/als too... he needs to be on board and realize it can be treated.
Best wishes!
Posted by canefan17 (Member # 22149) on :
He's oldschool. I doubt he'll come on here.
I'm the messenger though and have no problem relaying everything.
I know he can be helped!
Posted by kday (Member # 22234) on :
Rocephin slows the progression of ALS.
I couldn't tell you if it's the antibacterial properties, the fact that it lowers glutamate, or both. Researchers seem to think that it's glutamate reduction since they relapse quickly off of it. I think it's possible they relapse quickly because spirochetes will change from an inactive form to an active form after stopping Rocephin. Perhaps a cyst buster is needed. I'm not sure if researchers are taking pleomorphic forms into account.
I know minocycline is a no-no with patients presenting with ALS.
I'm not going to say that ALS is always Lyme (as I don't know if that's true), however, I strongly feel that ALS is caused by a spirochete (of whatever genus).
Posted by JunkYardWily (Member # 24271) on :
ive seen where there is a connection between ALS and concussions. athletes who have suffered multiple concussions have a much higher rate of ALS.
Posted by hadlyme (Member # 6364) on :
The new article on concussions and ALS just came out. Yes, they are on the 'right' track as to trying to find 'what' triggers the autoimmune disease.....
But I do believe that one trigger is lyme/coinfections.
Posted by GiGi (Member # 259) on :
Lyme is not the only problem and all have to be addressed, though Dr. K. has found that all his patients who come to him with an ALS diagnosis also do have Lyme. But they have a number of other problems.
Knowing what I have learned over the last few years, today I would take a different route and do AI first to erase the DNA problems following it very quickly with
Reason for this: there are multiple underlying conditions that caused the Lyme and/or ALS to take over.
No chronic disease has only a single cause.
This is based on my personal experience dealing with Lyme and knowing what happens to most people who try working their way through it. So please understand that.
Take care.
Posted by tamboski (Member # 23331) on :
gigi can i talk to u via pm
Posted by Pinelady (Member # 18524) on :
Yet these patients were lost to the long term treatment it takes to get well, because they got worse on treatment....
All that are chronic get worse before we get better. And many of us require at least 3 mths of antibiotic to get the herxes----And they continue the lies 11 years and counting!!!
ALS not Lyme----It took me 3 mths of at least 5 different antibiotics before I knew what hit me...A Big Mack TRuck...They cannot even imagine what Borrelia can do to a human...
XMRV is also implicated. We don't have any evidence of the virus causing cancer.
Repeat-they just know its there in some prostate patients and chronically ill.
For all we know right now it may actually be good. Meaning=it may prevent the cells by distracting the innate immunity-from replicating so fast.
We must have more money.
Posted by canefan17 (Member # 22149) on :
GiGi,
How does someone get their hands on energy medicine in the US?
I've read about Bionics and all of that. But what if you don't own one?
Posted by Tammy N. (Member # 26835) on :
If you haven't already, you and your family should see the film 'Under our Skin'. Very eye opening and informative... and it touches on the ALS/Lyme situation.
I agree with everyone - you need a great LLMD. No matter how good or highly regarded the doctor is, if he/she is not an ILADS trained LLMD you will not get the answers and treatment needed.
Best to you and your uncle, Tammy
Posted by kidsgotlyme (Member # 23691) on :
I hope that you can talk your uncle into at least looking at the possibility of treating with IV antibiotics!!!
I had a dear family member die of ALS right before I watched the UOS documentary and it made me so sad to think that she could have been saved.
Posted by LSG Scott (Member # 21624) on :
i lost my mom to ALS and i wish i new then what i know now God speed on getting this to your family
Scott
Posted by GiGi (Member # 259) on :
tamboski, I do not use the PM here. Feel free to e-mail me at [email protected]
Kanefan, this type of energy medicine is available also in the US. One source is http://www.andiwellness.com/FAQs.html All infections and more are treated - take the time to study my earlier links on this above. It is well worth the effort.
Take care.
Posted by Dekrator48 (Member # 18239) on :
I'm pm'ing one more link to you...
Posted by canefan17 (Member # 22149) on :
Bump before I send to Uncle.
Any other experiences or Dr's you can recommend. He lives in Chicago.
Posted by Rumigirl (Member # 15091) on :
There is a clinic in Colorado that specializes in treating ALS/Lyme. Treating ALS/Lyme is quite specialized, as the treatment has to be strong enough, but not too strong, or it will cause the ALS to worsen.
PM me if you want more info.
If he is already bedridden or in a wheel chair, they say that unfortunately, it is too late.
As Gigi said, there are always MANY factors that need to be addressed in addition to the Lyme.
Posted by canefan17 (Member # 22149) on :
Rumigirl,
Yes I'd like info. Your PM box is full
Posted by Tammy N. (Member # 26835) on :
Reminder - be sure he sees the film 'Under Our Skin'. It really is a must watch.
Wishing wellness and recovery to you and your uncle. Tammy
Posted by scoobie (Member # 26226) on :
I was diagnosed w/ ALS in March 2010. Tested positive for Lyme disease. Been on IV Rocephin and Zithromax along w/ some orals since May. I am losing ground. Everything is getting difficult. I am weak all over, speech is bad...I will not give up, but I am scared.