ALS/LYME UPDATE, PLEASE

[175]

Hello,

It has been couple of weeks since I last posted the same question:

Please, would anyone initially diagnosed with ALS, also tested positive for Lyme, started on antibiotics POST ON HOW ARE YOU DOING?

After just short of a month on it, my father stopped taking the abx until we figure out what to do. He was losing weight due to no appetite whatsoever. He is in general weaker than before abx. This is a complete nightmare, with no end in sight.

The Lyme diet calls for No bread at all, no sugar, no sweet fruits, no bananas, no fruit/veg juices, even if home-made, no many things; it asks for meats/proteins/fiber. So, there is not much to choose from, and I think with taking out the many fruits and juices which he was used to prior to the Lyme coming in the picture, with the sudden influx of more meat, plus red meat (which we had put in the taboo items before), we are frankly in a mess.

Hoping to hear from you all!

 

[244]

Antibiotic update

Dear Upila,

My mother has just finished one month of antibiotics without a Herx reaction but significant muscle deterioration resulting in less mobility. She lost a lot of weight to the point where she decided to reduce dosage (against my opinion) just so she can have her appetite back. We will be visiting with the doctor next week and I will let you know how it goes.

Where did you read about the Lyme diet? Is it only for certain meds that you need to be on such a diet? I did not read anything like that at www.ilads.org

My prayers are with you. We are all battling an invisible beast!

Lily

 

[175]

Hi Lily,

I SURE HOPE both your mom and my father recover from the one month of antibiotics.

As far as the diet - I have been reading everything regarding how antibiotics work, what group is used for what and how, etc. Since Lyme is bacteria caused, bacteria thrives in certain environment, especially sugar/sweets and alkaline state (my father has always had very high pH readings - over the normal). So, fruits which easily turn into glucose create that environment and "feed" the bacteria (banans, melons, oranges, tangerines) Not only that, but fruits in general are to be eaten only after a meal and not at night, and only sparingly. To cut it short and be blunt, if one has to adhere to the exact instructions - he has to eat grass and meat. (And we all know, red meat is not good anyway, but he had to, to get some stregth back)

Please, keep positng, I hope others will post as well. Now more than ever, I believe, it is up to us to inform and help each other. Why would not a doctor know? Have they not supposedly treated ALS / then Lyme patients?

Of course, at this moment, afer reading your post I am so scared, that I really can care less about the bacteria. I doubt he will be taking any antibiotics: looking into ALL NATURAL BACTERIA-KILLING agents, and will go back on simply healthy. nutritional diet. It was horrible to see him not eat - it's impossible while on these high doses abx.

Thanks again, Lily!

 

[273]

upila

I lost a ton of weight on 2.5 months of ABX. I'm cheating on the sugar thing and having a milk shake with a protein supplement once a day. That has stabilized my weight.

I've got a new one ordered that will double the calories. Most days I take Threelac which adds the good bugs to my gut.

 

[175]

Hi Terri,
Thanks for checking in!

Well, we had tried the protein shakes long time ago (early summer), and they made my father feel much worse, until Rcharlton (posting here) brought it to my attention that these powder shakes are full of "natural, or hydrolized, flavors, etc. stuffs," which defeats completely the purpose of using them. I have been suspecting that whatever he has, is also very glutamate sensitive and he is prone to excito-toxicity both from emotional or food-derivatives, all of which bring on symptoms: increased fasciculations, weakness, depression, etc.

We threw away the boxes of proteins, and replaced with home-made shakes using banana, splash of orange juice, milk (half milk, half water - he hates milk) and teaspoon of honey. I hate bananas, but in this shake, I actually like them. He used to put 1.5g of high potency creatine in the shake also. And in the pm, he would have carrot juice (juiced at home).

There is a lot to be said for a good diet, and at this moment he is way-off!
===============

Terri, how do you feel? Has there been any improvement since you started the abx? I remember how happy you were when you got the Lyme verdict. Is that still holding true? Did you experience the Herx reaction? If it's all true, the bacteria reproduces avery 28-30 days, so Herx should be noted at that same interval. Did you observe such reaction? Is it still going on? What abx were/are you on?

 

[273]

No improvement on the ABX. In fact I've gone downhill. I had some serious Herx on Rocephine (2 grams IV daily) last month. Got on the welchol and that backed off.

I'm shopping for a LLMD in my area. Doing Samento in the mean time.

I was tested for 5 co-infections early this week. Should get the results in 10 days.

 

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Hi Terry,
Sorry to hear!
I just posted on the Lyme forum (check the link on Donta's article) - it is quite informative. There appears to be much truth to the consideration of the L-form bacteria and type of abx being used. I also found a lot of good information from the links posted by Amigo, about a week ago on this forum.
Tomorrow my father is starting Coll.Silver in addition to the Samento he is already on. I wish I knew what dose Samento he should be taking. I found a protocol on the C.Silver, so will follow it. Ordered some Noni juice, as well - just going for the completely alternative options for a while. Trying to motivate him to use the sauna and jaccizzi - heat is supposed to be bad for Lyme bacteria - it thrives in cold.

 

[273]

Upila:

I was on 20 drops twice a day in 4 oz of water. He'll need to build to that by adding one drop per day.