posted
That sucks! PM sent
Posts: 747 | From Utah | Registered: Apr 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- 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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posted
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.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
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
Posts: 61 | From limbo | Registered: Nov 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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).
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
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.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
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.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I agree. I need to get him to a LLMD soon, right?
Can someone give me a list of LLMD's close to Chicago?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
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!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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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).
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
ive seen where there is a connection between ALS and concussions. athletes who have suffered multiple concussions have a much higher rate of ALS.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
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.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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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.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
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
Posts: 2238 | From East Coast | Registered: Jul 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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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
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
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.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Bump before I send to Uncle.
Any other experiences or Dr's you can recommend. He lives in Chicago.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3792 | From around | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Rumigirl,
Yes I'd like info. Your PM box is full
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
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
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
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.
Posts: 12 | From Maryland | Registered: Jun 2010
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