40, 11 kids, and it looks like I'm getting an ALS diagnosis

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BlsdMama
New Member


Date Joined Feb 2017
Total Posts : 1
   Posted 3/17/2017 8:04 AM (GMT -6)   
Having lots of neuro issues but I'm having a hard time believing ALS.

I had a tick bite (black legged tick) in 2008. 2 weeks of doxy - no rash.
I lived for four years in the NW area of Oregon (they have the Pacific tick out there that carries Lyme) and backpacked, trailed, camped, etc. constantly.
Super healthy but we moved from temperate Oregon in 2014. That was the first symptom. Got here (Iowa) and my right leg would get rigid above the knee in cold weather if I shivered.
Delivered him in 2014 and had my first bout of PPD. (That hasn't happened after the first 11 pregnancies so it was REALLY weird for this one.)
Dramatic, horrible miscarriage at 12 weeks in Dec. 2015
Another 11 week miscarriage with a D&C removal in July 2016.
Drop foot starting early fall-ish but we thought it was a bad knee - I'd had a car accident years ago and sometimes it is crabby.
Developed hyper reflexes, clonus
Cleared by the first neuro.
Second thought it was MS. Cleared that with a lumbar puncture. LP showed Lyme antibodies at 0.12 in the CSF but it isn't considered positive until greater than 0.99.

No surprise that a follow up blood test was negative.

I have fasciculations now in both legs, the abdomen, the right arm. I have muscle wasting on the right leg - calf. They are doing a repeat EMG Monday morning and we are told that ALS is on the table. They don't want to talk Lyme.

The EMG is going to be bad. The muscle wasting is readily apparent.

Here's the thing - I would like to not piddle around with various doctors and hop from place to place. I am convinced that I want a PICC line and either ceftriaxone or Rocephin, because, well, I think these critters would like to kill me. I have eleven kiddos, the baby is two, I need to get this kicked in the butt, kwim?

I'd love to hear some advice. I'm in the Midwest and have been in touch with our local Lyme group.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 3/17/2017 8:15 AM (GMT -6)   
Hi BlsdMama!
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​

​ To be perfectly honest, IV treatments are not any more successful than oral meds are. The main reason to use them is if your digestive system is too compromised to handle and process the oral meds. Then they may be completely necessary.

I would suggest that you skip the other doctors and make an appt to see a LLMD (Lyme Literate Medical Doctor):

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the ​
(insert the nearest larger city & state)
area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2029
   Posted 3/17/2017 11:32 AM (GMT -6)   
Do you have any other symptoms - besides muscular in nature? Like maybe fatigue, trouble sleeping, numbness, brain fog, heart stuff, etc?

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 3/17/2017 12:10 PM (GMT -6)   
ALS has been linked to dental work. If you have a lot of dental work might check it out with a biological dentist.

https://www.westonaprice.org/health-topics/dentistry/root-canal-dangers/

https://www.youtube.com/watch?v=xmYFDkIa6kw

jennydancingfish
Veteran Member


Date Joined Sep 2016
Total Posts : 887
   Posted 3/17/2017 3:25 PM (GMT -6)   
You totally have Lyme in my opinion.Tick bite bingo I'm so sorry honey I can imagine how frightened you must feel. TBH if ALS is on the table you will probably have to travel. They have a really good clinic in Wisconsin that has dealt with ALS-type Lyme. Besides that there's just the H center in Kansas. Besides that for als type lyme if you don't want to do a herbal protocol on your own, you would have to go east or west. Good luck start lyme treatment asap
Currently with LLMD planning on doing modified Cowden Protocol and Buhner
Switched to this route after very bad herxing on rifampin
Diagnosed with Bartonella and Lyme. Twin has Bartonella and Mycoplasma and Lyme.
Twin improving on rifampin, zithromax, and tinidazole. Anger, rage, explosivity, emotional volatility, head and bone squeezing, sense of overheatedness all improved.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26390
   Posted 3/17/2017 3:57 PM (GMT -6)   
Tick bite plus symptoms = Lyme disease.


Very experienced Dr. in Washington, DC...but that is a long way to travel.
I believe he does phone or skype appts. in between the in-person visits. (I know he used to)

So, you might get 6-9 months before you need to return again.

You can email me and I will send you names from my list.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 878
   Posted 3/17/2017 4:46 PM (GMT -6)   
http://www.preventionandhealing.com/articles/Time-to-Heal-at-Last-ALS-amyotrophic-lateral-sclerosis.pdf


I have met ron several times at this clinic. I would not know that he has als-very kind.

If it was me I would see a biological dds-plus look into ten pass ozone and maybe run down to see this doc

PS this clinic has picture of Ron a couple years after this article dancing at his granddaughter's wedding-

Post Edited (magoo2) : 3/17/2017 7:14:10 PM (GMT-6)


bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4388
   Posted 3/17/2017 6:56 PM (GMT -6)   
My als like stuff is lyme.and bartonella..bvt and rocephin has helped...port is better for long term than picc
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