LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » FL1953 and ALS connection?

 - UBBFriend: Email this page to someone!    
Author Topic: FL1953 and ALS connection?
2young2dieMom
LymeNet Contributor
Member # 25434

Icon 1 posted      Profile for 2young2dieMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has Dr F noticed a connection between FL1953 and ALS? I was dxd with ALS in 2010 and have been trying different abx but my atrophy is still progressing slowly.

I just tested positive for FL1953, could this bug cause ALS in some people?

--------------------
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  |  IP: Logged | Report this post to a Moderator
kelmo
Frequent Contributor (1K+ posts)
Member # 8797

Icon 1 posted      Profile for kelmo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes. But, I know people who also had Lyme Disease and ALS. Treating the Lyme Disease healed the ALS symptoms. There was a beloved doctor in Colorado who treated himself for this reason. He has since retired, but he was the authority on it.

Dr. F is our doctor. What he is noticing is a combination of the FL1953 and other organisms combined to create the symptoms for certain chronic illnesses.

Since he is in the research phase I did not ask for specifics. He just said that certain combinations of the FL1953 and another organism can contribute to Autism. Pair it with another organism and get Chronic Fatigue Syndrome...etc.

He has told my daughter that he is really trying to keep her from developing MS. So, that tells me it's another combo pack she is dealing with.

Hope that helps. Are you showing signs of ALS? Were there any other infections detected? My daughter has gone through treatment for babesia and bartonella. If Lyme was in the mix, it never showed up.

Posts: 2903 | From AZ | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
2young2dieMom
LymeNet Contributor
Member # 25434

Icon 1 posted      Profile for 2young2dieMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've only tested positive for fl1953, nothing else on ingenex or wb. I've been taking different abx for 2 years and am still getting weaker.

I have muscle atrophy in my neck and shoulders, now my legs are weaker and I can't climb stairs.

I guess Dr F doesn't have any specific treatment that helps ALS yet. I've been going to the clinic that Dr M started in CO. I keep getting c.diff from all the drugs and I'm still gradually getting weaker.

--------------------
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  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Maybe you're missing a co infection. I was sliding backwards and my new doc tested me for a bunch of stuff I didn't even know I had!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mycoplasma was one of the important coinfections that contribute to ALS. And a negative test for any of these infections means nothing. You need to be treated for all the suspected pathogens, judging by symptoms (and common sense).

Heavy metals are important in the neurological illnesses, also. Along with lots of other issues to address: parasites, Candida, etc.

I'm sorry to hear about what you are going through. Maybe it is time to try rifing and herbs, too, due to the c-diff.

Posts: 3753 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
jdp710
Member
Member # 34017

Icon 1 posted      Profile for jdp710     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would also very much look into mold. Mold is surprisingly common. Would recommend to do a google search on mold and ALS and then read http://www.royalrife.com/mold_summary.pdf
Posts: 52 | From USA | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
little_olive
LymeNet Contributor
Member # 28063

Icon 1 posted      Profile for little_olive     Send New Private Message       Edit/Delete Post   Reply With Quote 
If you are on Rifampin, Zith, Amoxy, and Flagyl, that treats just about everything out there that we commonly get. Bartonella, Lyme disease, mycoplasma, CPN... Ehrlichiosis isn't COMPLETELY covered but I've never heard of causing ALS.

The only thing you appear to be missing is treatment for Babesiosis. Do NOT do NOT DO NOT let a negative test persuade you into believeing you can't have it. (You know how many negative tests I got before I finally, one day, got a positive result even though I'd had it all along?)

This is the organism that affects the muscles the worst out of the most common coinfections, I think. Everyone always talks about the air hunger, but it causes severe muscle weakness and exercise intolerance, as well as decreased muscle function following activity.

If FL1953 is a protozoan, perhaps treatment for Babesia such as with Bactrim or Plaquenil or Mepron or Malarone (Zith only treats it a little bit), might be of help for it also? Kill two birds with one stone? If what you're doing isn't working, change it!

Your sig says you only did Mepron for two weeks? If it was because you responded violently to it, that might be your breakthrough and a sign that it was working.

I wish you luck and bravery in fighting whatever you have that's trying to bring you down [group hug]


little olive

(P.S. - As far as c. diff is concerned, seriously consider adding s. boulardi to your probiotic regimen! Just don't take it around anti-fungals. It's a good yeast that doesn't harm you, and has been proven to reduce the incidence of c. diff during antibiotic treatment by 50%. You can get it where you buy your usual probiotics at the health food store. Refrigerated is ALWAYS best.)

--------------------
Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine
Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08
IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++
IgG deficiencies and MTHFR 677TT mutations

Posts: 512 | From USA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
2young2dieMom
LymeNet Contributor
Member # 25434

Icon 1 posted      Profile for 2young2dieMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I do take florastor and s.boulardi, also vsl3. I have also had my house remediated for mold.

I tested high for lead and mercury so I'm taking chorella as much as tolerated. I have gerd and take prilosec every morning otherwise I'll get pnuemonia again.

Mepron made me extremely suicidal. I'm sure it was killing stuff but it was too hard for me to handle it.

I have the feeling Ivromectin is going to be difficult too but I have to try it.

--------------------
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  |  IP: Logged | Report this post to a Moderator
hadlyme
LymeNet Contributor
Member # 6364

Icon 1 posted      Profile for hadlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Do take it slow with the Ivermectin.

Yes, he does think ALS and FL1953 are connected. He is doing a couple of major studies on it right now.

ALS is an autoimmune disease.... no one knows what triggers it. Findings are that this protozoan is one of the triggers. Stay in his protocol please!! [Smile]

--------------------
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  |  IP: Logged | Report this post to a Moderator
little_olive
LymeNet Contributor
Member # 28063

Icon 1 posted      Profile for little_olive     Send New Private Message       Edit/Delete Post   Reply With Quote 
Definitely do the Ivromectin. And start as slow as possible so that you can stick with it. The worst of us often have to start at 1/3 or 1/2 the doses that others do.

--------------------
Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine
Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08
IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++
IgG deficiencies and MTHFR 677TT mutations

Posts: 512 | From USA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.