ALS Symptoms Lyme & Bartonella

In Cure Unknown by Pamela Weintraub and Why Can't I Get Better by Horowitz had chapters about people who had lyme that mimicked ALS.

George T. said...
My dad has the same symptoms.. Symptoms start from 2012.. 2014 we had ALS diagnosed but all the neurologist says clinical its not look like ALS but he has ALS.. He is still walking but with much difficulity.. Does anyone with the same symptoms has improvement with something.. And i mean much improvement..

i had als type syptoms ,dx pdn with white matter etc etc ...much much better with many modalities including but not limited to iv rocephin ,rifampin/zith,andrographis ,houttynia ,bvt ,rife and more bvt .welcome shepple.

Creek trail is dave martz clinic where they use tini riffy roceph with zith til plateau then go for babs ...

i do believe its bart and myco effecting the nerves to demyleination .
stopping the bugs is a challange(wanna herx but not too hard ) ,rebuilding is whole other game . Cowden imo is for people who wanna dabble and maybe maintananfe but when 2 -5 year death sentence is on our plate i dont think a 4:1 herb mix of cats claw is gunna cut it ...get serious for serious symptoms seek iv tx or begin with bvt ...just my opinion ...coming from bedridden to working again in 2 years ...

Moonchez said...
(I'm going to preface with the fact I am not diagnosed with lyme/bart yet, but my LLMD is convinced I have both.)

My symptoms are VERY similar to your sisters. Left side everything - including numbness, variable tingling, and a partial facial palsy's that has actually progressed into an ocular/vestibular offset (the worst of which is convergence insufficiency). I've also been misdiagnosed as having had a stroke, meningitis, autoimmune diseases, a blood vessel malformation in my brain, hemiplegic migraines, and basilar migraines that have caused my various seizures, stuttering and blackouts.

My bloodwork just came back with high EBV of all things with a note that says it might have shut off my immune system and effect other test results.

Bodies are crazy.

Please keep us updated on your sister. I really hope its not ALS.

Most of my symptoms were/are left side as well. I had sudden weight loss, tremors, and total body weakness (even worse on my upper left side), muscle atrophy, fasciculations - body-wide, throat issues...would sometimes choke on my food, confusion, anxiety, depression, etc.

My Physiotherapist acknowledged frozen shoulder but was surprised at the muscle atrophy/wasting in the scapula/subscapular area that I had...and am still trying to 'fix' after a year and a half of Physio - targeting that area in particular.

I agree with TymeToKill - she most likely won't see a big improvement for several months. She will need to dig in her heals and fight this with all she's got.
BTW, that's great improvement, TymeToKill!!!

TymeToKillLyme

What's a personal Sauna?

Lmgraff - Please don't wait until January to retest and then look for a LLMD. The results take 3 weeks.
It can take several weeks to book an appt.after that. Your brother may not get in until March - once the test results are back and you look for a LLMD. That is 5 months from now - 5 more months for the symptoms to progress.
Do not listen to the ID Dr.
Band 34 is lyme 'specific'.

An ID Dr. isn't someone you want to take advice from. (Unless, of course he is a Lyme literate one - like Dr. j.)

Please look for one now.

What has he got to lose? The ALS diagnosis - there is NO treatment to cure him...or even put it into remission.

Lmgraff said...
My Brother was diagnosed with ALS July 2017 . He took the standard lyme it was negative.
He has slurred speech, muscle wasting , weakness , & twitching .He went to a infectious disease doctor who took the Igenex & Quest lyme test , see results below. ID Doctor said he was 4 1/2 bands positive and needed to be 5 bands positive for lyme , however he wants to go over the results with ALS doctor . Also wants him to take the test over in January 2018 and see a LLMD.

Igenex
Weston Blot
IgG
18 ++ Positive
31 Indeterminate
34 ++ Positive
41 ++Posivite
58 +++ Positive

only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .

IgM
41 Indeterminate- Test 488 is recommended for confirmation .

Quest Lab
Phagocytophilum IgG <1:64
IgM <1:20
Rickettsia AB PNL WREFL
RMSF IGG -Negative
RMSF IGM - Negative
R.TYPHI IGG -Negative
R.TYPHI IGM -Negative

E. Chaffeensis AB IGG Negative
E.Chaffeensis AB IGM- Negative

Bartonella AB (IGG,M)W/RFL
B.HEndelae IgG Screen -Negative
B.Quintana IgG Screen -Negative

GOOD LORD. WILL SOMEONE PLEASE TELL ME WHAT GOOD ID DOCS ARE???? SERIOUSLY, WHY ARE THEY ON THIS PLANET OTHER THAN TO CAUSE MORE HARM?? There are a handful of useful ones.

Sorry - but that doc is very dangerous.

I agree w/ Girlie 100%. PLEASE get your dear brother to a LYME SPECIALIST. Please refer to the other good "Lyme masquerading as ALS" links and articles on this thread and do more research if you need to.

TIME IS OF THE ESSENCE. Do what you need to do to get him to an Lyme specialist who will get him on an aggressive abx protocol as fast as you can. Do everything you can to also incorporate a more comprehensive protocol that addresses other infections as well, GI health to protect from the abx and also as much detoxing as he can tolerate. MANY abx protocols for ALS are ineffective because all these MDs are doing is loading up the body with abx and not also supporting like we are all doing.

Please also post his WB results and we will show you that they are positive for Lyme. The ID doc has no idea what he's talking about.

Generally, I post a very long explanation of why those tests are so inaccurate that studies now show it produces 50% false negatives. But since this is an ALS thread, I'll give you the cliff notes - but please ask more questions if you like and you can even email me.

The tests the CDC promotes and the interpretation protocols for the tests follow the CDC's very very strict disease surveillance guidelines that were created NOT to diagnose but to find all the similar Lyme manifestations (identical strains, for instance). Therefore, they will miss most cases - that's how the surveillance criteria was designed with very strict criteria that is very specific, not comprehensive.

The minimal band requirement supports the surveillance criteria, it does NOT help diagnose all cases of Lyme. These are serology tests so they're looking for your immune response to the Borrelia burgdorferi and/or its DNA. Some of the WB bands are Lyme-specific, including a couple of your bands. Your body can't possibly produce antibodies to something that isn't there. Kind of like you can't be sorta pregnant.

HIS TEST SHOWS LYME. PERIOD. It is not unlike many of the tests of members here. Do not wast time retesting to start treatment. He simply needs to get to a knowledgeable person to interpret the test correctly.

Even the CDC states on their website that the tests should not be used solely to diagnose Lyme and that it's a clinical diagnosis, albeit practically hidden so most MDs are clueless about it or simply don't know how to clinically diagnose. But ID docs SHOULD KNOW BETTER. I'd love to point this out to that ID doc - maybe you can do it for me...

Buried at the very bottom of this web page is the CDC's recommendation that LD be a clinical diagnosis... took me 15 minutes to find and I spent two wks all over their website when I was learning about Lyme:

"Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement."
www.cdc.gov/lyme/healthcare/index.html

Please don't hesitate to ask any questions -

-p

Hi Hoagie, thank you for your post. My sister Kelly's symptoms have dramatically worsened. We had to act fast. She and I jumped on a plane to California this past Friday afternoon for her to meet up with my sister-in-law and they are now in Mexico at a clinic where she's getting aggressive in-patient treatment. She will be in a toxic-free environment for two full weeks.