posted
Isn't there a clinic in Colorado that focuses on lyme/ALS?
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
txgirl,
yes I called them. They treat very conservatively. Not sure it's enough (based on what i've read from ALS patients)
I do want to bump this thread for ayone in here treating ALS/Lyme. Or is there a good support group somewhere.
The couple I had been helping just started the husband on IV rocephin yesterday. They are really excited and hopeful - but i had to plead some ignorance because I don't know a TON about ALS and IV treatment.
Just knew they needed it lol
The Doc they are seeing is semi-familiar with Lyme but not really (if that makes sense)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
chiquita incognita
Unregistered
posted
It sounds like it is lyme, but if ALS is involved too then I know someone who recovered by having his amalgams removed using Hal Huggins DDS's method (which grants advanced protection from mercury re-exposure)
Detoxification of the metals afterward is also important because they can be stored in brain and fatty tissue for decades if not detox'd according to Huggins, DDS MS
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
They have a farm in North Florida and have both been bit by ticks.
He was really sick 3 years ago (hospitalized)
So all signs do point to Lyme.
It's interesting hearing Lyme/ALS patients talk about their symptoms though.
Not a lot of neuro symptoms. Just weakness, slurred speech, loss of motor function.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
I was dxd with ALS last year but am treating it with antibiotics. I never tested positive for lyme or coinfections, even at igenex. I have all the clinical symptoms, however.
I was on iv rocephin for 8 months. It made me feel great! I got most of my strength back. Slowly, my white blood cell count started declining and I ended up with a staph infection in my picc line. I also developed c.difficile.
I've been off all abx trying to recover for 5 months now and have deteriorated alot. I can hardly walk and I shake and twitch.
Since abx worked for me, I guess I have lyme. ALS never never gets better.
I was on 2g of rocephin daily.
-------------------- 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 |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Sorry to hear 2young
That sounds rough. Are you able to walk?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
The weakness can also be MG. Did they test for this?
Also ask them about probiotics, maybe they do not know it is necessary.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
In the book Cure Unknown she tells the story of the LLMD who had ALS and got better while taking antimalarial drugs on a safari. So it seems babesia had something to do with his ALS.
Please tell your friends to see a good LLMD that is knowledgeable about ALS. Tell them it is not just borellia they need to treat as the co-infections play an important role too.
I think the doctors name that had ALS was Martz. He said it is very important to start abx before the person is immobilized for the best chances of recovery. If your friend is already in a wheel chair there is no time to waste.
According to the book, when a patient with advanced ALS takes abx, it can kill them. Very few people that came to his clinic for treatment had the same dramatic results that he did because they were more advanced.
I hope he finds someone quickly and he is helped. It is so sad that ignorance does this to people.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Nefferdun, well said and I totally agree. IV Rocephin isn't gonna work by itself. Make sure their Lyme Dr. treats for anything/everything.
I know someone personally who went through this. They treated him inadequately and he went downhill fast. His mind stayed intact the entire time, yet he was CDC Positive for Lyme.
In the end, the Family gave up the Lyme and just accepted mainstream medicine saying there is no cure for ALS. I offered to Rife the guy, as he was a childhood friend, but the family refused and asked me to let him be for what time he had left.
I think RIFE would be a great option in addition to abx for your husband. That, and a ton of Colloidal Silver.
If it's affecting his Motor function, Strength, Speech, etc. You know the Lyme has entrenched itself very deep into the tissues.
Rife should be very effective in theory.
Google all over the place for Royal Rife as there is so much to read if you chose to use this option.
Take care and best to your husband,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
There is a new study, would their doc be open to that? I could post it. They also use metronizadole. Do you need rife frequ.?
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
He's on IV rocephin and they are playing it by ear.
I've done my part at this point. They will see an LLMD in a few months
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
Yes, it is Dr. David Martz. I heard him speak. He has an amazing story.
My mother and my cousin both died of ALS. I myself was told I had it by several doctors. I am fairly sure they both had advanced lyme disease. I have the same swallowing, speech,trembling, balance, cognitive problems but I think we caught it in time.
The abx are helping me a lot. I am no longer in my wheelchair or on oxygen and most days I am up and about. That is after more than 10 years of a bedridden existence. The abx really do help! But you need to move fast and decisively with a top notch LLMD.
I don't know when, if ever, I will be able to stop the meds. My emphasis is quality of life, and mine is certainly better than it had been for a very long time.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic