neuroborreliosis

Hi George -

It's great that you're looking into neuroborreliosis as an alternative to your dad's ALS dx. I'm really hoping more and more people do this.

There are a couple of abx gurus here - Girlie is one of them - although it's Easter holiday here so the moderators are in/out all day. But she'll chime in soon.

BTW - why injections? or do you mean IV (intravenous?) antibiotics? Or IM (intramuscular) injections?

Can you also describe his symptoms and other treatments he may have tried? Thanks!

-p

Hi George, welcome!

Good for you - not accepting an ALS diagnosis for your father.

I also am wondering if the doxy is Intramuscular injections?
Unfortunately if your father has chronic lyme, 3 weeks of abx won't be enough - no matter what form he uses.

How long has he had symptoms?

Are you able to order abx online?

I guess it's not feasible to travel to another country in Europe for help?

When your father starts treatment - you will want to watch for a herx. This is from the die-off of bacteria that results from treatment. The bacteria gives off endotoxins which will flood his system and cause inflammation resulting in an increase in current symptoms and/or new symptoms emerging.

To help with that...you need to have your Father doing multiple methods of detoxing. In fact, I suggest you start him detoxing before you even start the injections. The detoxing helps flush out the toxins.
You will want to start with only a few detox ideas....and gradually add a new one in every few days until he is doing several daily.

Make sure your father is drinking lots of water daily..
You can add fresh squeezed lemon juice into some of the glasses.
He will need a liver support supplement (Milk Thistle extract is a popular one)

Have him start those right away (in addition to probiotics)

Some other ideas:

- epsom salt foot baths
- Dry brushing his skin to open up the pores...which allows the release of toxins
- Take a binder - eg. Activated Charcoal.


Here is a link to a site with some more detox ideas:

www.tiredoflyme.com/detox-methods.html


George - your father is so fortunate to have your support.

I hope we can support you. Please ask any questions you have. Read posts, and come on anytime to vent.

...and we encourage all new members to look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

To stop als sx vey strong treatment like iv rocephin and or bvt is needed in my opinion..see dr dave martz story

I contact with this site again before some time ago.. My dad dont believe its lyme so i hard for me to convinse him.. He has the symptoms from 2012 i think.. hes diagnoste come in 2014 but the doctor not seem sure.. he is still walking bearly and he dont have any obvious atrophy yet..
Pirouette i contact with a doctor for lyme here in Greece and she told me that we can take andibiotics for 3 weeks in inject form.. She is not told me why injections.. He took riluzole, dopa, miorel, b12 in large doses (injections) and other.. he is main symptom is the balance and he is knees are like stack.. Hes speech is bad.. this was the first symptom.. One night he thougt hes hit by a stroke and the other day hes speech was to bad.. After a while he speech was better.. Anyway now i need someone who knows to tell me do this this and this.. The only thing i can do now is to take the inject andibiotics for 3 weeks and if he needs other supplement like proviotics.. And i hope to see improvment soon to make him believe that this is it and to try for this.. Girle abx like?

Hi George.

I didn't realize when I posted yesterday that you had posted here a couple of months ago.

Did you ever contact a Dr. about lyme treatment for your father? You were mentioning Germany?

And, as Traveler said - 3 weeks of abx may not be enough time to see a positive response.

Hi George -

Recommendation:
I think it's a good idea to try out the antibiotics. If he reacts with more severe or intense symptoms, then it suggests that the antibiotics might be hitting an infection that could be causing his ALS-like sx. If so, there may be other ways to get oral antibiotics. But do this carefully as these are tricky infections.

Injections:
Regarding "injections" - the best approach for your father is probably a short course of oral antibiotics to test his reaction. Longer-term, if he doesn't have any bad reactions in his GI related to the antibiotics, it would be beneficial for him to be on oral antibiotics for awhile - several months, perhaps.

"Injections" to us typically means intramuscular injections into the muscle, which aren't going to work as well as antibiotics administered orally or with IV (intravenous - medicine injected into the artery through a PICC line in the arm) that can circulate throughout the blood stream to reach most parts of the body. I also think your dad probably needs something that crosses the blood-brain-barrier, due to his neuroborreliosis diagnosis and I'm not sure muscular injections are the best.

I could be wrong and by "injections" his doctor might mean IV. So I would ask the doctor more questions about what she means by this and instead, ask for oral antibiotics. You can try to find other solutions or sources while he's testing out the antibiotics.

IF… you have no other choice but to try the "injections" then by all means, do so. But please prepare your dad in a couple of ways before starting any antibiotics -

PREPARATION -

Diet
Please have him stop eating all unnatural sugars and reduce simple carb foods to a minimum (foods like flour, white rice, potatoes). Not forever, just when starting out with antibiotics. There are bad and good bacteria in our guts - we need the good bacteria to help control yeast/fungal overgrowth but the antibiotics kill all the bacteria. Avoiding sugary foods that feed the yeast will help keep it under control.

Detox
Please start him on a couple of herbs that help protect liver and kidneys - milk thistle seed and burdock root. You can find them in most health food stores or online at like Amazon.com

Also, please implement a binder to help flush his GI tract of the toxins from daily life and to help remove what he is killing with the antibiotics. A good one you can buy at a health food store or online is bentonite clay, another one is activated charcoal capsules, or psyllium husk. Please have him drink a LOT of water with these - 8 oz before and after, minimum. And have him wait until at least 1-2 hours after consuming anything (especially medications) before taking the binder, and then wait another 2-3 hours after the binder before consuming anything again. The binder needs time to work and will flush out other good stuff with it if you rush the buffer times.

These are just "starting out" suggestions - there are many other good guidelines on this site - please be sure to read the "New to Lyme?" thread at the top of the page. Please keep in mind that your dad's age might mean you'll need to proceed a little differently than most people.

Please, always ask any questions you may have!

-p

Post Edited (Pirouette) : 4/18/2017 10:23:00 AM (GMT-6)

Pirouette many thanks for the answer.. but.. if i do not convinse somehow my dad that he has lyme.. i cant make him to have so hard diet.. he is 55 years old.. one think that i read about these antiviotics is that they have protein inhibitors.. some research show that als caused by a protein that geting out of control and became toxic.. last research shows that masitinib(Protein kinase inhibitors) has many benefits for als patients.. masitinib is a dog medicine.. dog - ticks? :P i dont know if the als or lyme exists or if its the same thing.. but if protein inhibitors make work i want to try it.. and i hope to show benefits in a 3 monthes so after to follow diet and to see what really helps.. The last time that i was trying to buy something from amazon with mastercard (and paypal i think) i could not and i think couse here in Greece we are still in carantin.. if its easy for you to send you a link with a site that i can order to tell me what of those things are most important?? thanks again..

i think doxycycline and 1 more that i cant remember..

yes i know..

he is not agree yet.. but he will.. if oral is better from injections maybe i will ask the doctor for pills.. i thought the injections was better this why i dont ask.. i try on amazon uk.. https://www.evitamins.com/gr this is the site that seems to have low prices and i think i cant buy from there.. the questionnare that you send me its hard to answer.. he has make a lyme test in germany.. but the results was mix.. they dont even answer me if its negative or positive.. if its ok i want to tell the name of the clinic so to avoid someone new like me.. But Traveler i read on many articles the clinical photo of lyme and for als.. ans its so close to lyme..

Hi George -

I'm glad others have also provided suggestions… takes a village. ;)

Regarding oral antibiotics - yes, please ask the doctor for oral prescription.

IF he has the type of reaction from oral antibiotics that suggests he might want to continue on antibiotics, then you might consider the correct dosing and if IV antibiotics is more appropriate. They have basically the same effect - one is not better than the other. But the oral doses for ALS scenarios can get pretty high and duration can be rather long and this can be very rough on the digestive tract.

However, IV antibiotics can be VERY complicated and include additional risks for him, and much, much more expensive. The thing to focus on is to get him oral antibiotics to test his response and while he's on them, you have a little time to decide your next step.

I also agree with Traveler - the questionnaire is really important and can help you and doctors determine if he might also have other infections closely associated with Lyme that need different treatments. Do you think you can get him to answer the questions again? Maybe ask him a dozen questions per day… work through the list slowly? This would also help us help you.

-p

G -

I'm not sure of details but I remember that those who have tried treating in the context of ALS-type dx and sx have higher doses. Maybe someone else can correct me.

-p