Borrelia Bacteria & ALS Connection

We have a strong body of evidence suggesting that ALS (in Deanna and in others we have been in contact with) is likely caused by an undiagnosed infection with borrelia bacteria and at times coinfections. We believe this because Deanna (and the vast majority of other individuals we have worked with who have ALS) have been diagnosed with borrelia infections that are not Lyme Disease. (All Lyme Disease is caused by Borrelia, but not all Borrelia is Lyme.) Given the body of evidence mentioned above, we believe that it is extremely important to be tested for Borrelia if you have been diagnosed with ALS. Here is one important factor to note: Borrelia are a hardy type of bacteria that are very tough to diagnose and even tougher to kill. Not every test and treatment plan actually works for this type of bacteria.

Borrelia Testing

There is no test on the market today that is highly accurate. However, there is one test on the market that, in our experience, has been more accurate than all others. (This test is described below.) This is the test that Deanna and others with ALS have used and has detected borrelia in their systems. Deanna and those who have tested positive for Borrelia have had to be tested multiple times in order to receive a positive result. Most of their tests resulted in false negatives repeatedly before eventually receiving a positive. (False negative results are very common, but false positives are not. False negatives happen often because this type of bacteria hides in the soft tissue, which makes it extremely difficult to detect.)

How do I get tested for a borrelia infection?

Before you begin testing and, eventually, treatment for Borrelia, it is imperative that you find an infectious disease specialist who specializes in Lyme Disease. This type of physician will be very familiar with treating Borrelia bacteria and will be able to supervise you during the testing and treatment process. As far as testing, the testing and treatment protocol that Deanna and others with ALS have found extremely effective involves the following:

Testing (Show this to your infectious disease physician)

  1. They first do the provocative antibiotics test: For 21 days, they take Azithromycin 500 mg/day orally and Flagyl 500mg/day orally
  2. Then, they get tested for the borrelia infection with the following tests by IGenEx (starting with an uppercase i, not a lowercase L):
    1. The IGenex test for borrelia is LTP3
    2. The IGenex test for co-infections is CP3
    3. Alternatively one can order the borrelia immunoblot. Then, if that is positive, order the tests for co-infections as this would be cheaper.

Again, while no test on the market is considered very accurate, this IGeneX test is the most accurate one available. False negatives will be common, but false positives are highly unlikely. (Deanna and most people we have worked with who have ALS have had to take multiple tests over a series of several months to one year before testing positive. IGeneX and your Lyme Literate physician can help you decide how far apart to space your tests.)

If you have questions, can contact IGeneX directly

US: (800) 832-3200
International: +1 (650) 424-1191

Treatment (Show this to your infectious disease physician)

Your physician will be able to give you more details about this, but from our perspective, typical antibiotic treatments have not worked to kill borrelia in many individuals with ALS whom we have communicated with. Borrelia bacteria have protective coatings (cysts) around them that are immune to antibiotics. The pulsed antibiotic method breaks down the protective coating around the bacteria to make it vulnerable to antibiotics. It also treats the bacteria before it is able to reproduce. Treating with the bacteria’s reproductive cycle in mind is necessary because borrelia reproduce quickly, so in order to reduce the population of bacteria, they have to be killed quicker than they are able to reproduce. This is where the pulsed antibiotic method has helped Deanna and others with ALS.

Pulsed Antibiotic Method (Show this to your infectious disease physician)

For three days, Deanna, takes IV Rocephin (an antibiotic) at 2 gms every 12 hours and Tinidazole (alternative to Flagyl, to open the cysts protecting the bacteria, to allow the antibiotics to kill it). The dose of Tinidazole that she takes is 500 mg orally twice a day, one to two hours before the Rocephin antibiotic. This protocol is specific for the borrelia bacteria found in Deanna (borrelia recurrentis, according to IGenex). There are many different species and strains of the genus Borrelia and you’ll need a treatment specific to the species or strain of borrelia that you have. Further if you have co-infections these may have to be treated with added antibiotics. Ask your infectious disease doctor about this.

If you take Rocephin, you should also speak to your infectious disease doctor about taking Actigall 300 mg orally 2 X a day to avoid the formation of gall bladder stones that can occur with Rocephin. Also, speak to your doctor about taking Diflucan 100 mg orally every Monday and Thursday to avoid fungal infections that can occur when taking high doses of Rocephin or other antibiotics. (Fungal infections can be a side effect.)

What Deanna Takes to Replenish Good Bacteria (Show this to your infectious disease physician)

For seven days, to replenish good bacteria, Deanna takes PRESCRIPT-ASSIST, which combines probiotics and prebiotics. She takes Butyrate too, which is food for the good bacteria, to keep them alive, and NT Factor, which repairs cell membranes from cells that have been damaged due to the Borrelia.

So, for 3 days she kills the bad and some good bacteria, but for 7 days she only restores the good bacteria.

How the Deanna Protocol fits in with the antibiotic treatments described above:

Can I just kill the borrelia and forget the Deanna Protocol Plan…or at least wait until I’m diagnosed with borrelia to start the Deanna Protocol?

You can, but most individuals we work with (who have ALS), Deanna included, have chosen not to do it this way. Those who have skipped the Deanna Protocol and have focused solely on treating borrelia have reported a rapid decline in their body’s ability to function.

Here’s why: It often takes a long time to diagnose borrelia and then even more time to bring the bacteria under control. During that time, the borrelia is rapidly attacking and damaging the nervous system and the body is declining. The Deanna Protocol comes into play to support healthy neurological function, which is why many prefer to take it while they are in the process of being tested and treated for borrelia. Beyond this, borrelia often can cause permanent damage to the nervous system, which remains even after the infection has left the body. This is why Deanna and many others prefer to take the Deanna Protocol even after they are no longer infected with Borrelia. The Deanna Protocol is beneficial for the nerve cells because it supports normal energy levels in the nerve cells, supports healthy motor function in the body, and improves neural signaling. (Neural signaling is the ability of neurons to send signals, which is necessary for normal nerve function.)

Can I just take the Deanna Protocol and not treat the Borrelia?

You can, but those who have used both the Deanna Protocol and Borrelia treatments have reported much better results. The borrelia attacks and damages the nervous system. The Deanna Protocol, (while it can help support normal energy levels in the cells, healthy motor function in the body and normal neural signaling) cannot get rid of the bacteria that is attacking the nervous system. The nervous system has the best chance of recovery if you kill the bacteria that is damaging it in the first place.

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