What To Do If You Think You Might Have A Borrelia Infection - A letter from Dr. Tedone with information on testing for Borrelia bacteria

1/8/2017

Dear WFND Subscribers:

There is anecdotal and laboratory evidence that ALS, MS, and perhaps some Alzheimer disease are caused by the borrelia bacteria.

Medical science has a difficult time detecting the borrelia bacteria. This has been documented by many people with ALS (pALS) initially testing negative for a borrelia infection to rule out Lyme disease, but then testing positive in late stages of their disease.

There is a host response to the borrelia bacteria which is a lowering of natural killer (NK) lymphocytes in response to the borrelia infection.

Who should be tested?

If an individual has a neurological deficit or cognitive impairment of unknown cause, testing for NK lymphocytes will indicate contact with the borrelia infection, and can be used to justify treatment for the borrelia infection. This approach is much more acceptable than watching and waiting while the individual continues a downhill spiral.

Where can I be tested?

To my knowledge, the test is only done effectively by one laboratory in the United States, Lab Corp. The test code is # 505026 and the name is HNKI [CD57] panel. The cost is $75.00. The test is time sensitive and must be performed within twelve (12) hours of specimen collection, so it should not be done on a Friday. The blood needs to be placed in a lavender top test tube.

What information will be indicated in the test results?

The normal range is 60-360 ul. If the result is below 60, then treatment for borrelia is indicated and should be discussed with your treating physician. There is no guarantee if the test is normal that one does not have a borrelia infection. It may be that the infection is in its early stages and has not depleted the NK lymphocytes below the normal level. Once treatment is started, its effectiveness can be determined by an increase of the NK CD57+ above 60 ul.

Test information:

HNK1 (CD57) Profile

Test Number: 505026 CPT: 86356; 86357

Specimen        Whole blood

Volume            Fill tube(s) to capacity.

Container        Lavender-top (EDTA) tube and yellow-top (ACD-A) or (ACD-B) tube

Collection        Invert tube 8 to 10 times immediately after collection. To preserve cellular viability, collect specimen so it will arrive in the laboratory within 48 hours of collection. Indicate date and time of venipuncture on the tube(s) and on the test request form.

Storage Instructions    Maintain specimen at room temperature. Do not freeze or refrigerate.

Causes for Rejection Specimen refrigerated or frozen; clotted specimen; hemolysis; contamination

Use      Monitor the CD57 lymphocyte subset in individuals with chronic Lyme disease

Limitations      This test was developed, and its performance characteristics determined, by LabCorp. It has not been cleared or approved by the US Food and Drug Administration (FDA).

What should I do once I have the test results?

As stated previously, a normal test does not rule out a borrelia infection and should be repeated in 3 months. Once the test is performed, we ask that the results be forwarded to us so we may collect data on the value of the test in detecting a probable infection by the borrelia bacteria.

Receiving follow up test results, information on the treatment modality used, and the date of onset of the symptoms will help us to determine which treatment is most effective.

What if I do not live in the United States?

A problem exists that those who do not live within the United States as they may not have access to this test. I would ask that they email Shannon, Kathy Shannok@LabCorp.com to see if she can advise you on how you might be able to make the test available to you either through Lab Corp or a similar laboratory in your country.

There is one further test that can be performed it is called a thermogram. Those who are immune compromised indicating that their body is fighting off an infection will have a cold spot on the thermogram on the back of their neck at the junction between the cervical and thoracic spine. This test is readily available in most parts of the world and is not invasive.

How can my results help other pALS?

If you have the test done and do have a cold spot in this area, please notify me because I am collecting data to establish this as a diagnostic means of detecting a bacterial infection. This finding coupled with the clinical picture will give us a basis for instituting treatment for borrelia.

Sincerely,

Vincent M. Tedone MD

110 Comments

Sandra zuckerman

1/30/2017 09:12:23 am

How is Deanna doing on her treatment for the Bireklia infection?

Dr.T. link

1/31/2017 10:30:12 am

there has been no progression of her disease since Nov. 2015

Julie DiCecco RN link

2/22/2017 09:06:25 am

Dr T.,
I was dx with ALS 6/16. I'm stable since dx, thanks to DP. Would Borrelia testing now have implications for me? My biggest issue is dysarthria and weakness R arm and hand. My monthly score has never been lower than 45. May God bless you and Deanna.

Dr. T.

2/22/2017 10:39:44 am

We are now treating the cause of ALS in Deanna, a Borrelia infection, with herbal chemical, The Cowden support program [CSP]. In my opinion the cost of doing nothing is unacceptable. The DP keeps cells alive the CSP kills the bacteria causing the illness. I would not wait for a definitive diagnosis as this bacteria is very hard to detect.

Dr. T.

Linda Baker

8/2/2017 04:15:50 pm

Have you heard of Andy Cutler and his books written about low dose chelation? In his experience, cilantro and chlorella can make the patient worse if they have mercury toxicity going on, as it redistributes the mercury. I believe the Cowden protocol has both in one of their products. The gal who heads up ALS Naturally on Facebook did the Cowden program and got her arms and hands back, but said it was very tough. Andy also says it's hard to get rid of Lyme when one has mercury toxicity.

Vincent M Tedone MD

8/2/2017 05:58:28 pm

We feel all should focus should be on the fact that ALS is caused by a bacterial infection. The DP slows the disease progression but we now have the possibility of a cure with the CSP and ABX treatments.See my posts in other areas of this web site.
Dr.T.

Selma

10/25/2017 12:23:56 pm

How is the treatment going?

Vincent M Tedone MD link

10/25/2017 07:30:58 pm

She is still with us and functional 10 years after initial symptoms.
Dr.T.

David sarkisian

3/12/2017 01:35:45 am

Hi we live in australia my wife was diagnosed with mnd a year ago and she has almost lost her speech and very weak in her walk and off balance can you please advise me what to do.

WFND Missy

3/14/2017 12:44:54 pm

I'm sorry to hear about your wife's diagnosis. Please send an email to info@winningthefight.org and we will send you some additional information.

Ode

8/15/2017 07:25:45 pm

Hi Dr. T,

Just want to have a clarification whether borrelia specimen needs to be in the hands of LabCorp. within 12 hrs or 48 hrs from collection? The article above stated both figures.

Thank you!

8/15/2017 08:24:11 pm

12 hours.

Kristin

8/22/2017 03:36:17 am

Dr. T,

Why do you not use antibiotics for the bacterial infection instead of the CSP?

Kristin

8/22/2017 06:30:41 am

It is difficult to know which specific bacteria other than Burgdorferi are causing the disease plus there frequently are co infections present. So to cover all bases I am using the CSP along with the antibiotics.
Dr.T.

Ken Anderson link

8/27/2017 02:28:51 pm

Dr. Tedone,

Having contracted ALS in 2014, I began DP 2 years ago. I recently tested less than 60 (CD57) so am beginning CSP next week. I have a couple of questions and comments:

1. CD57 on the West Coast is $200 out of pocket, because HMO or Family physician wouldn't prescribe it.
2. Where should I send my CD57 lab test results? What other information would you like to know ?
3. Should I take antibiotics along with CSP? If yes, I doubt if my Family physician will prescribe, but which antibiotic should I ask for?
4. What should be the target number on the CD57 to cease taking the CSP?

My family and myself would like to sincerely thank you, Deanna, and everyone else involved. We are convinced I would be a lot worse without the Deanna Protocol.

Ken

8/27/2017 06:06:36 pm

1. Lab corp is the lab we use
2. I would advise you to find a Lyme literate doctor http://ilads.org/ilads_media/physician-referral/
3.I would use both The CSP and antibiotics to cover all bases.
4.The normal range of CD57 at lab corp is 60 to 360. I would want it at 100.

Ken Anderson

8/27/2017 06:45:02 pm

Thank you for your prompt reply. I should have said that I used LabCorp. as well. Are you interested in my test results?

8/28/2017 04:59:59 am

I am interested in the test results but cannot be your treating physician. More important than the actual CD57 number, normal 60 to 360, is the percentage, normal 2. to 17. we look for a steady rise over a 6 mos period then would start a treatment of stem cells to regain function.
Dr.T.

10/17/2017 02:41:12 pm

I have no problems sharing my test results, with the hope that another PALS may be as encouraged as I am. My CD57 test shows 2.4% and 55ul. I began the Cowden Support Protocol in September and will take the CD57 test in December.

10/17/2017 08:22:22 pm

Good Job Ken keep up the fight.

Oklast

2/14/2018 09:07:36 am

My CD 57 was 53 at 2.3 on 11/5/15 and is now 130 at 8.1 on 1/28/18. I am researching stem cell clinics and procedures inside and outside of the USA.. Any advise is appreciated. Thank You.

2/14/2018 09:33:14 am

Good results. Please tell us your treatment regimen so others can be inspired by your results?
Look for autologous induced pluripotential mesenchyme cells. look for the percentage kept alive when translated to nerve cells. Then look for a delivery that is least invasive.
My daughter is not at this stage yet her last CD57 was 99 started at 20 in 2015. She is now on the Burrascano pulse antibiotic method but we plan to do stem cells soon so keep us informed so we can share the information.
Dr.T.

2/21/2018 06:54:58 am

Thank You for the advise & direction on stem cells. My protocol has changed many times since I first found your website in late 2013. I was pulsing ABx for 18 months, but at not at high enough doses(IMO), then I went to herbal(CSP), and now I'm also doing BVT. I also get an vitamin IV bag with msm and glutiathione once a week. I have not been vry consistent in my protocols since stopping ABx and my diet is horrible. My condition is deteriorating at a constant rate since the original diagnosis of ALS on 8/27/2103 and Lyme on 3/24/2014. I still work, but the muscle atrophy in my hands, arms, and shoulders is starting to become a problem. My CD57 count was a surprise, but it's time to get rededicated to the program. Thanks for all you do. #19

Angela Hannon

4/6/2018 01:39:20 pm

My results were 5% and 60 absolute. What do you think?

4/9/2018 12:33:20 pm

Dr. T, my results were 60 and 5% on cd57. What do you think?

4/9/2018 12:39:56 pm

If yo have symptoms I would see a LLD. Get treatment while being tested for Borrelia. As recommended here
Dr T.

jennifer peloquin

9/2/2017 03:21:04 pm

My brother recently passed away with ALS symptoms, bulbar variety. He was creating a mountain bike trail named after him and was an avid (to put it mildly) outdoor enthusiast. He was tested through the IGenex labs and was found positive for RMSF but was inconclusive for Lyme. Because (I think) he felt he did not have symptoms which would indicate a bacterial infection, i.e. he lost muscle control of his mouth first and had major fasciculations throughout his body, he never seemed to believe this could be the origin, a bacterial infection i mean. What do you think? I know there are too many factors you do not know but do you think a bacterial infection could have been the cause? He knows he was bitten by ticks and he told me that the doctors told him not to worry about it. I wanted to submit his brain to the university for post-mortem investigation but my older brother (who demands that he is athiest) would not permit this. Thank you very much and I would LOVE to see others tested and receive treatment for bacterial infection, especially if caused by ticks, and lead toward their recovery. ALS is such a horrid symptom and cause of death.

9/3/2017 06:36:21 am

So many who have ND are ultimately testing positive for bacterial infection, usually Borrelia. He probably tested positive for RMSF [Rikettsia] but had a co infection with Borrelia. Co-infections are very common with tick born diseases.
Dr.T.

Jim Savino

9/19/2017 10:42:35 pm

Can I get this test myself? My neurologist is not cooperative.

thanks

9/20/2017 04:39:40 am

I would find a Lyme literate doctor. lads.org/ilads_media/physician-referral/

9/21/2017 11:03:11 am

I am not sure that my question about the cowden program was understood. Andy Cutler and says that Chlorella and cilantro move mercury around, which is not good for mercury toxic people. Also, I have been told that this test is inconclusive, because it is testing the immune system, and Lyme hides from the immune system. And therefore, it should only be used as a supporting test.

Lorrie Corry

11/7/2017 02:40:30 am

I had a setting event of amalgam tooth breakage with mercury in it. Am concerned with mercury hiding and fact that it may make things worse. I have bulbar onset and am on day 5 of DP... I have just started cramping in calves...opposite of what to expect as I only had 3 cramping episodes in last year...what could cause the increase on this Protocal?

11/7/2017 05:52:38 am

Cramps are caused by a lack of GABA
Twitching and fasciculations are caused by not enough AAKG.
For the mercury problem I would see a Lyme literate doc
ilads.org/ilads_media/physician-referral/
Dr.T.

9/21/2017 11:13:22 am

Linda I would address your question about the herbal medicines to Nutramedix or Dr Cowden. What test are you referring to that is inconclusive? The CD57 from lab corp is specific for Borrelia.
Dr.T.

Julie

10/28/2017 11:33:29 am

I'm in a dark place. I began having coordination issues in june 2010. I developed pots and a rocking type vertigo. I was diagnosed with Lyme in December 2013. I seemed to stay the same condition then balance worsened. April 2016 I fell and hit my head. I've weakened tremendously. I'm in a wheelchair and am so depressed. They suspect ALS now. I'm so confused. What do I do? I feel such grief. Thx.

10/28/2017 11:43:57 am

Julie you need to read the section under latest developments that refers to Borrelia infection. You need to find a Lyme literate doctor
http://ilads.org/ilads_media/physician-referral/ ALS and LD are both caused by a Borrelia infection and maybe co-infections.
Dr.T.

10/28/2017 02:06:23 pm

I also fell in April of 2016 and got a concussion. That's when I began a rapid decline. Do you have any opinion on stem cells? I'm so desperate. Thank you. 😔😔😔

Theesa Geiger

11/18/2018 01:37:37 pm

I need a lyme literate doctor in Colorado!

10/28/2017 08:38:30 pm

Until the bacteria are killed stem cells will not help Please read the information on the web site it is all here
Dr.T.

David Flaugh

11/20/2017 07:26:40 pm

Hi, I was diagnosed with als on 8/15 I’ve been on the DP since 10/15 I feel that it has helped to keep my progression slow. I live in PA and have picked my ticks out of me over the years I tested for Lymes in 2015 it was negative at that point. Do you recommend any doctors in or around PA for further testing. And where is the lab at that you recommend. Thanks

11/21/2017 05:31:19 am

HI David, Sorry you have this terrible disease. The good news is we now know the cause, Borrelia infection and perhaps with co-infections. You can find a Lyme literate doctor at .org/ilads_media/physician-referral/. The questions you ask are addressed on the web site under latest developments. It is important to Go on the DP, CSP and a combo of antibiotics. Don't wait for the test results.
Dr.T.

ode

12/4/2017 09:09:39 pm

Hi Dr. T,

May I ask what particular branch of LabCorp does the borrelia test? I have checked all LabCorp clinics in the Minnesota area but none of them performs the test. Thank you!

Ode

12/5/2017 05:57:35 am

Ode we only use IGenix https://www.igenex.com/testing/diagnostic-tests-for-borrelliosis/ and use # 1

12/5/2017 10:47:30 am

Hi Doc, thank you for your usual prompt reply. We do appreciate this site! I was diagnosed with ALS since 2009 and the Lord has been very gracious to me I still can walk and talk but I have been slowly declining so since we found this site I have been on DP. I am a little bit confused though because all throughout the article above you have been mentioning LabCorp for the tests so is it IGENEX now that you are recommending? Is #1 test referring to Borrelia test? Can you recommend what test I should do first? Thank you!

Heidi

4/4/2018 07:58:12 am

I see you are recommending the iGenex test here for the Lyme test, but I read earlier that LabCorp was what you recommended. We have a LabCorp here in town. Are you still recommending LabCorp for the test, or only iGenex?
Thansk!

12/4/2017 09:26:08 pm

By the way, there is a certain Janice who made a comment in Chuck Norris' article recommending a website that is selling supposedly herbal ALS medicine, checked it, looks like a SCAM, beware readers!

12/5/2017 05:58:22 am

Thank you Ode

12/5/2017 11:21:46 am

Ode it is lab corp for the CD 57. and IGenix for serology [bacteria] You should be on antibiotics and under he care of a Lyme literate doctor
http://ilads.org/ilads_media/physician-referral/

4/4/2018 09:13:30 am

Heidi. we use lab corp for the CD57 and Igenex for bacteria detection

Rubén Frutos

12/18/2017 05:24:00 am

Dear Dr. Teodone

My name is Rubén Frutos and I write you from Spain. My mother was diagnosed with ALS in march of this year, bulbar variety; she has almost lost her speech and has problem swallowing. She is treated with Rilutek (Riluzole) and we are trying to follow the DP but sometimes it is difficult to get some of the products here (in Spain). Do you know if SIMPLESA sells the products of the DP in Europe?

Also, we are trying to contact with Shannon, Kathy Shannok@LabCorp.com to know if they can suggest to us some laboratory here in Spain to make the test CD57, but after 3 mails nobody answer us…

We do not know if it would be a good idea to beginning the CSP without knowing the results of the test. And we do not know what kind of antibiotics you are talking about when you suggest “use both the CSP and antibiotics to cover all bases”.

Sincerely thank you very much.

12/18/2017 06:22:15 am

Dear Ruben, I am sorry your mom has this terrible disease. There are ALS associations in Spain, google them for help. Your Mom needs to be under the care of a Lyme literate doctor. Try this web site; http://ilads.org/ilads_media/physician-referral/
I would not wait for the test but would have her treated ASAP with the CSP and Antibiotics recommended by your doctor. Simplesa does ship out of the country.
Dr.T.

Martin

2/25/2018 12:58:08 pm

Hello, I too was searching for the European seller, found only one in UK, but still I save much on delivery costs. They have shop here: www.detoxpeople.eu
Search for Simplesa.
(I do not mean to advertise here, by no means, only sharing what took me very long time to find).
I am pALS from Czech Republic, the delivery costed around 9 pounds, which is almost 10 times cheaper than from US
Hope this helps!

2/25/2018 01:22:35 pm

Thank you Martin for good information.
Dr.T.

12/31/2017 01:06:24 pm

Hi, Dr T.

First, thank you for everything you do.

I was diagnosed with ALS in July 17 after having weakness & twitching for 2 years before that. I am ALSFRS - 40 and just started DP.

LabCorp did a CD57 per your recommendation recently. My level was 178 and 9.9%. Does this mean Borrelia are not a factor here? What should I do?

Thanks again
Jim

1/1/2018 07:36:42 am

Hi Jim,
Jim I am sorry you have this terrible disease. You are the only person I have encountered who Had ALS and a CD 57 above 100. I would repeat the CD57 it would not be the first time they mixed up specimens. I would also be tested at www.IGenex.com for a Borrelia infection.
Find a Lyme Literate doctor http://ilads.org/ilads_media/physician-referral/ for antibiotics. Plus I would be on the DP and CSP

1/22/2018 03:22:12 pm

Thanks, Doctor. I'll get on those today.

Below is a link to an article I came across regarding "syphilitic" ALS, which was treated successfully in Morocco with penicillin G and hydrocortisone. I offer it to your attention because here we see yet another spirochete implicated in ALS.

https://f1000research.com/articles/5-1904/v1

Best Regards and thanks again

jim savino

1/18/2018 06:26:28 pm

Hi Dr T.,

Is it possible for the DP to cause a herxheimer reaction? If yes, how long does one have to take DP before it happens?

1/18/2018 07:51:48 pm

Ode,
Herxheimer reactions arr caused by toxins released when the bacteria dies. The DP adds energy to cells keeping them alive.
Dr.T.

1/20/2018 08:46:36 am

I just thought I would raise the question because I have been taking DP for 5 months now with a full dosage but lately I have been feeling very tired and have been sleeping a lot. So I had some blood tests done for a possible flu virus but it turned out negative. Anyway, I am hoping to start on a new herbal protocol soon from a Lymes doctor. I do appreciate you for the time you spend addressing our questions and for all the research you have done on ALS! Thank you very much, may the Lord give you more wisdom as you continue doing this.
Ode

1/20/2018 09:38:14 am

Hi Ode, I was not aware that tests could be done to document the Flu virus? So you probably do have the FLU. I hope you are on antibiotics to treat the Borrelia infection I would also be on anti bacterial herbs the CSP.

Julie Berbert

1/31/2018 10:16:15 am

I have fast progressing ALS. After only 18 months after the first symptoms, I'm mostly paralyzed from chest down, arms are weakening and breathing and speech are starting to be affected. I'm waiting for my Lyme tests to come back but am planning on doing the Cowden program. I also want to do the Deanna Protocol. Can these both be done at the same time? I know that would mean a ton of supplements a day, but I really want to fight this thing. If there is any hope, I really want to live.

1/31/2018 12:36:44 pm

Julie I am so sorry you have this disease. Since it is progressing so rapidly I would advise you to take antibiotics under the care of Lyme literate doctor http://ilads.org/ilads_media/physician-referral/. The DP and CSP can be taken along withe the antibiotics
Dr.T.

Eve Qureshi

2/11/2018 11:33:17 pm

Really useful information. We’re in the U.K. and struggling to find someone to test my husband who was diagnosed a year ago. Can you let us know the name of the antibiotics please.

2/12/2018 05:03:56 am

My daughter was on Rocephin 2 Gm IV every 12 hours and Tinidazole 500 mg twice a day.
She also took Actigall PO 300 mg while on the Rocephin to avoid the formation of bile stones
Diflucan PO 100 mg every Tuesday and Thursday and anti fungal
Take probiotics, prebiotics and Butyrate
Find a Lyme Literate doctor http://ilads.org/ilads_media/physician-referral/
Dr.T.

RAJAMANICKAM RAJAKKANNU

2/16/2018 11:43:57 pm

Hi Doctor Tedone,

I am raja from India, i have been diagnosed with motor neuron disease (MND) on June 2013.

My symptoms started after i visited to France, where the Lyme infection possibility are high, so i suspect i might have got Lyme infection.But unfortunately i couldn't do any lab testing as no Lyme testing available in India.

So please suggest that the above listed Lyme medicines (which are your daughter taking) can be taken without any test, also will there be any side effect if we take these medicines.

2/17/2018 06:06:29 am

Dear Raj,
My daughter is following the Burrascano pulsed method 3 days on high doses of AB then off them. Take the DP, CSP and my daughter takes Rocephin IV 2 gm every 12 hours Plus Tinidazole PO 500 mg one hour before the IV Rocephin.
Actigall 300 mg PO as long as she is on Rocephin to avoid gall stones
Diflucan PO 100 mg every Monday and Thursday to avoid fungal infections.
Take probiotics , prebiotics and Buytyrate.
You can Google Burrascano and Horowitz for their treatment protocols.
I offer the above suggestions if you cant find a Lyme Literate doctor.
http://ilads.org/ilads_media/physician-referral/

2/15/2018 08:09:20 pm

Thanks so much for all your guidance and information. I took the CD-57 test and my results were 51 and 3.9%. If you'd like me to send an electronic version of my results to you if it would be helpful to your research, just let me know where to send it. I'm asking my PCP to refer me to A LLMD so I can add antibiotics to the DP and CSP that I'm doing. My FVC score went down almost 30 points to 46 in the last 2 months. I'm hoping I have enough time left to even stop the progress. I really wish I would've learned of this months ago.

2/20/2018 10:31:58 am

Dear Julie,
Thank you for your offer. We plan on collecting results and using them for research at USF. We will send out information in the future with a questionnaire
Dr.T.

sebastian

2/21/2018 06:40:15 am

Good morning Dr Tedone
Under Deanna protocol, I take a lot of supplement including curcumin, asthaxanthine..;
Here are my lab tests results
NK CD3-CD57+ 11% - 340/mm3
NK CD3-CD56+ 30 % (!) - 927/mm3 high out of range

What could be your interpretation ?
Must a lyme or co infections disease be exluded :( ?
thank you for your help

2/21/2018 08:00:06 am

Dear Sebastian,
I don't understand your lab results. The only Lab that is reliable for the CD 57 Test is lab corp.
Do you have a Lyme Literate doctor?http://ilads.org/ilads_media/physician-referral/
If you have neurological symptoms then you should be on antibiotics
Dr.T.

3/5/2018 10:24:20 am

I'm trying to make some tough decisions. My tests indicate Lyme (see comment above), but I'm fairly advanced. Mostly paralyzed from the waist down. Core muscles almost paralyzed. Arms\hands are weak, very difficult to lift them. Breathing (fvc) in 40s or low 50s.
If I go on the extensive list of antibiotics from my LLMD, I worry about what it could do to my gut biome and side effects in an already hard to manage physical condition. Obviously, I know death is worse than a bad gut, but not worse than a bad gut plus just stopping the ALS progression without any improvement. What is the likelihood that I could actually regain function? If I could even get my arms and breathing back again, even my core, I believe I could still have a high quality life in a wheelchair. If nothing gets better, I'd feel I'm just sentencing me and my family to years of stressful hardship.
Has Deanna regained any strength or just stopped progression? If she has regained strength, how much and where? What have you seen with others? How likely is it for me in my condition? I know you can't make predictions with certainty, but I'd love to just get a general idea from someone who's been around this block a few times. I need more info in order to make a huge decision of whether it's worth the effort to add more burden to my already overwhelmed caregiver (she'd give the IVs and help manage the antibiotics and it's effects).
Thank you for your help.

3/5/2018 11:40:11 am

Julie I don't have an answer for you. Deanna is not at a stage where we will try and recoup some function

3/7/2018 07:30:29 am

Not sure what that means. So are you waiting till her numbers are good and then you'll try stem cell for regeneration? Or is she too far advanced to offer hope of regeneration? I've heard accounts of pALS regaining some to even significant function as an effect of going on the antibiotics. So that didn't happen at all for her?

3/7/2018 07:21:02 am

How well had Deanna tolerated the heavy antibiotics? When I told my nurse what the LLMD wants to put me on (same Rocephin and Tinidazole and Actigall as Deanna, but he's also added Bicillin injections 2x week), she was very concerned about C-diff.

Vincent Tedone link

3/7/2018 07:42:47 am

I am waiting until Deanna's CD 57 gets above 100 then we will look at stem cells.
I Believe the Burasscano pulsed method of antibiotics is the best method b/c you can use high doses of antibiotics for 3 days while providing pre, probiotics and butyrate for seven days thus replenishing the good bacteria killed by the AB.
Dr.T.

Berto Bisschop

3/20/2018 03:43:16 pm

Please can you give me some answers. I have PSMA since june 2014 and since april also ALS. Can de Deanna protocol help me to sabilce my illness. Regards Berto Bisschop Netherlands.

Vincent Tedone MD

3/21/2018 05:20:19 am

Yes the DP will help you. Register and follow the protocol. You have a bacterial infection and need to find a Lyme Literate doctor

http://ilads.org/ilads_media/physician-referral/

Raja

4/24/2018 11:45:30 pm

Hi Doctor Tedone,

I consulted a Dr. in India for Lyme treatment and he prescribed the following oral antibiotics for 21 days 2 times a day.
Doxycycline and Lactic Acid Bacillus Capsules-100mg,
Ranitidine Hydrochloride Tablets I.P.150 mg
I feel so tired and sweating while talking these drugs.

another Dr. suggested me to take IV ANTIBIOTICS (Ceftriaxone IV 2mg for 2 weeks)
Could you please suggest me which one is more suitable for lyme treatment.

Thanks,
Raja

Vincent M Tedone link

4/25/2018 06:29:50 am

Raja, You may be Herxing ask you doctor to watch
https://www.youtube.com/watch?v=cm7BLpp6fTs and follow his recommendations.
I believe the pulsed method makes the most sense which I have indicated to you previously.
Dr.T.

Mary kay Parnell

4/28/2018 08:12:28 am

Hi Dr Tedone,

In 2016, I had symptoms of what at the time they thought it was a mild stroke. I immediately got on the band wagon of going all natural, then in 2017 confirmed it was ALS, I sought out a holistic doctor and had all the testing done, nutraval, igenix etc. I tested negative for Lyme the western blot. I got on a regimen of B12 shots,Bsublingual,coq10,L-methyl Folate,Vitamin C,Kril Oil,Vitamin-E,Alpha Lipoic,B-Supreme, I was deficient in all these, plus I take. Bergamot for cholesterol. Then at night Intake Low dose Naltroxen, vitamin D and Melatonin. Then In December 2017 I got asspuration pneumonia ended up in the hospital and talked into by the doctors and family to have a peg. Before the hospital I lost my voice and swallowing, plus lost use of my left hand and weakness in my legs as far as climbing stairs etc. So now I'm tube fed only, but I insisted on liquid hope which is plant based. I was hopeful, but now my walking is getting unstable. I also started taking LDI which is administered by my natural doctor I've gave probably 4 doses they start out very low I haven't noticed any improvement yet, plus I am doing the Bemer mat.
Sorry this is so long, I fear I am going down the wrong path now and would like your suggestions. Like all PALS etc, I'm not ready to die or even give up.

4/28/2018 09:03:54 am

Dear Mary Kay, I believe you have a bacterial infection even though it has not been documented You need a Lyme Literate doctor
http://ilads.org/ilads_media/physician-referral/
A provocative AB test azithromycin 500 mg PO and Flagyl 500 mg PO for 21 days then repeat the Lyme panel at IGenex. In the meantime I would be on antibiotics as prescribed by the Lyme doctor.
I would also be on the DP to slow the disease progression.
Dr.T.

Christoph

8/18/2018 10:06:49 pm

Hi Dr. Tedone,
I’m from Austria and I’ve been diagnosed with ALS bulbar 03/18, first symptoms in tongue 04/17, now left hand is weak, breathing almost normal. Speech has worsened a little – not too much. Also swallowing is little bit difficult but not too much. Little muscle twitching in arms, left eye lid, sometimes legs.
They found out that I had a benign ulcer on my thyroid gland, so my left half and a small part of the right half of the thyroid has been removed 05/18. Nobody knows that there is a connection between my thyroid and my ALS but it’s conspicuous to me that all my symptoms started on my left side. Even my tongue was shrunken only on the left half
Since 06/20/18 I drink a very high dosage of Chinese herbal tea every day twice, customized to my symptoms from the view of an experienced ALS-TCM-Doctor. Now I’m here in this specialized hospital in China, receiving herbal tea, acupuncture & massage almost all day since 07/19/18. I plan to stay here until 09/24/18. Since I take this herbs I feel some common improvements in my body (nightly sweating is gone, no more nightly urination, aversion of cold environment is gone, too low pulse is gone, better sleep, shrunken tongue is almost normal, muscle twitching is less, cramps are almost gone, amount and stickiness of saliva is less) and at least no worsening of other symptoms (swallowing, breathing, left hand power, speech quality are at least at the same level than 3 month before).
When I get back to Austria I’ll go on drinking the herbal tea for several months and I also want to start with the DP and your further suggestions. In the meantime I hope to find a good Lyme doctor. Therefor I’ve a couple of questions:
1) I’m not sure how the Chinese herbs are taking effect to my body, but do you think it is safe to combine it with DP and other treatment methods like CSP and ABX ?
2) What is your suggestion regarding Rilutek? I guess Deanna doesn’t take it, right?
3) I’m very confused about the Borrelia bacteria. Do you mean that almost every PALS has these bacteria? Or which percentage of PALS is having this?
4) I’ll try to find a reliable laboratory in Europe, but not sure wether I’m successful. If not – or if the test is negative, should I start with CSP and ABX nevertheless ?
5) I don’t believe in Anthony William. But could he be right with his theory of the Epstein-Barr virus causing ALS instead of bacteria? What do you think?
6) Is it likely that I have these bacteria even if I never had a bite of a tick? What else could be the reason for it?
Thank you so much for all you’ve done and do & wish all the best to Deanna
Christoph

8/22/2018 07:09:28 pm

And who can measure the cold spot in the neck, who makes this thermogram? Is it deep in the tissue or even on the surface of the skin? How many degrees Celsius difference to surrounding tissues?
Thank you!

8/23/2018 06:01:48 am

Christoph,
Anyone who does thermography. If the immune system is compromised it shows up as a cold [white spot} at the back of the neck at the C 7 level
Dr.T.

8/26/2018 05:51:39 am

8/26/2018 09:13:18 am

1) I’m not sure how the Chinese herbs are taking effect to my body, but do you think it is safe to combine it with DP and other treatment methods like CSP and ABX ?ANS yes
2) What is your suggestion regarding Rilutek? I guess Deanna doesn’t take it, right? ANS waste of money
3) I’m very confused about the Borrelia bacteria. Do you mean that almost every PALS has these bacteria? Or which percentage of PALS is having this? ANS we believe all do but are not sure
4) I’ll try to find a reliable laboratory in Europe, but not sure whether I’m successful. If not – or if the test is negative, should I start with CSP and ABX nevertheless ? ANS start with CSP and DP repeat test in severaL months
5) I don’t believe in Anthony William. But could he be right with his theory of the Epstein-Barr virus causing ALS instead of bacteria? What do you think?
6) Is it likely that I have these bacteria even if I never had a bite of a tick? What else could be the reason for it?
Thank you so much for all you’ve done and do & wish all the best to Deanna
Your welcome,
Dr.T.

Mary

10/1/2018 01:14:07 pm

Hi Dr. Tedone. I was diagnosed with ALS in January 2018 after a year of neurologic symptoms which began 4 months after a “late summer flu-like” illness in August of 2016. At the time I questioned whether Lyme could be a possibility since I have spent many weekends out in the woods and have found nymph tics on me afterwards. Serologic testing came back negative initially, a subsequent Western Blot came back with 1 reactive band- CD58, and a CD57 came back at 8. My neurologist is emphatic about the fact that Lyme DOES NOT exist in my state. I want to have lyme and co-infection testing done through IGenex, but am confused as to what test to order. I haven’t been able to find a good LLMD as I am in the state of Kentucky and I can’t get into my integrative medicine doc until January. What would you recommend? I understand you are not offering me any medical advise. The order form is just VERY confusing. My internist is trying to help but doesn’t really know how to advise me here since he is not Lyme literate and unfamiliar with these tests.

10/1/2018 07:28:34 pm

Dear Mary, I'm terribly sorry to hear you have this disease but am happy to tell you that there is a cure. Please see latest developments on this web site.
Dr.T.

Julie link

6/29/2019 10:11:01 am

Is Deanna considered cured now? Where do I find the information? Thank you

10/24/2018 12:09:18 pm

Hello Dr.Tedone,
I've just read that Deanna seems to be cured - that's really awesome for her and your whole family!
My ALS was diagnosed 03/2018 with bulbar onset, first symptoms 2017. Today I received the results from the blood tests and they didn't find any borrelia bacteria. My CD57 is at 240 (Range 60-360). But they found a Cytomegalovirus (CMV) infection.
Now I take medicine against this virus, and the DP Plan.
Do you think a provocative test for borrelia is helpful though my CD57 is good? And should I take the CSP?
Many many congrats to you, your team and of course to Deanna!

10/24/2018 12:36:06 pm

Did you use Lab Corp for the CD 57 and IGenix for serology?
Get a Lyme Literate doctor https://www.ilads.org/patient-care/provider-search/
Yes the provocative antibiotic test would be indicated

10/24/2018 12:53:16 pm

My Lyme Literate doctor (she is member of liads) cooperates with another lab in Germany called arminlabs.com . She said this is a very high competet and specialized lab but I cant evaluate. I live in the small Austria and I'm not sure if I find a Lyme literate who cooperates with Igenix and LabCorp. So I'm afraid to have to trust to arminlabs...((

10/24/2018 07:42:30 pm

I understand your problem. I would go on the DP, CSP and have your doc place you on macrobiotics.

Rinkal Dhillon

11/4/2018 01:34:13 am

My dad was diagnosed with ALS(bulbar) 1.5 years ago.He was perfectly fit before that,in fact he has been a badminton player all his life.Now he can’t walk much,his neck,throat and breathing muscles are very weak.He uses bipap at night.Dr.Tedone I recently read about deanne.Could you please guide me further how I could help him improve his health.He has been aspirating as well due to which he got pneumonia but he is out of the infection now.

11/4/2018 05:28:30 am

Your father needs to see a Lyme literate doctor. Do the provocative antibiotics test and go on the pulsed method of treatment with specific antibiotics for the bacterial infection he has. I would also go on the DP and CSP. All this information is on the web site.
Dr.T.

Douglas Johnson

11/28/2018 07:36:35 am

Dr. Tedone, thanks for your heroism and what you do for all of us. My wife was diagnosed with right leg onset UPMN Dominant ALS in March, 2017 after a year of symptoms. Confirmed at Mayo in May, 2017. Positive Sci 70 Ab, IgG, S at that time - nothing mentioned about that result. Does that result have anything to do with Lyme?

11/28/2018 09:15:35 am

Doug I'm sorry your wife has this terrible disease. I am not familiar with those lab values and what they mean. My daughter's case has convinced me that ALS is caused by a bacterial infection.
I would do the provocative antibiotics test and find a Lyme literate doctor to put your wife on antibiotics. I would also use the DP and CSP.

Lorraine Witt

1/14/2019 11:11:20 pm

Hi Dr Tedone. We live in the UK and my 41 yr old husband was diagnosed with Motor Neurones Disease Nov. 2018. Since finding your fantastic site i have got him on the DP protocol and got him tested for Lymes. He has positive results for Borrelia Burgdorferi Sensu Lato so we are now trying to find a LLD in the UK that can help him.

I just wanted to thank you for everything you are doing to provide a beacon of hope in a condition which mainstream medical practice says there is no hope for.

1/15/2019 06:54:03 am

Read the pulsed method under latest developments.

Monica

2/27/2019 10:20:43 am

Hi there,
I'm in Canada and not clear about the Lab corp test versus Igenex. I believe I am supposed to do both tests. DO I do the CD57 now and then wait for 21 days after antibiotics for the Igenex test? Onset almost 2 years ago. Diagnosed one month ago. Started DP a few days ago minus arginine. (previous non Lab corp and non Igenex tests were negative for lyme). TBD3 is a bit costly to do twice if I get a false negative but I am worried about waiting 3 weeks to start some kind of treatment. We are waiting to hear back on finding a Lyme literate Dr. Feel like its progressing faster now.

2/27/2019 11:56:00 am

The lab corp CD57 test should be done now and then every 3 months
you can do a TBD 3 test at IGenex for Borrelia
If positive then do the CP3 test for co-infections at IGenex.

I would also consider starting the Cowden support program [CSP] at www.nutramedix.com
Dr.T.

3/2/2019 03:16:04 pm

Thanks so much

Barb

6/29/2019 07:44:05 am

The Igenex test offerings revised 6/5/19 do not list CP3 test. Which would be the substitute test for the revised list? Thank you.

6/29/2019 08:06:17 am

Barb I would call IGenex and ask them. Also your Lyme literate doctor should be ordering the test

3/27/2019 05:26:32 pm

Hi Dr. Tedone,
My labcorp CD57 was 106 - do you see that high of a number much with Lyme? I am still pursuing Borrelia & coinfections testing at Igenix next week and have been on CPS for a couple of weeks, DP for longer. A big thank you to you and everyone at WTF.

3/27/2019 08:53:28 pm

The only CD57 test that we feel is valid i8s from lab corp. Normal 60 to 360. I wold do the provocative antibiotics tetst and see a Lyme Literate doctor.

Julie Newland link

6/29/2019 10:25:48 am

Does Deanna have pain with her weakness or pots? I have neuropathy and so much pain and pots. I’ve been sick nine years but positive for Lyme. I’m losing abilities now. I can’t walk or use my arms much. I’m scared to get checked for ALS. I lost my son last year and it’s unbearable. Thank you

6/29/2019 12:14:51 pm

Dear Julie please see our story under latest developments

6/29/2019 12:23:50 pm

Would you mind answering my questions regarding pain, Pots, dizziness, and all? Thank you

6/29/2019 12:42:00 pm

I'm sorry I don't have an answer for your question.

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What To Do If You Think You Might Have A Borrelia Infection - A letter from Dr. Tedone with information on testing for Borrelia bacteria

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