a different approach?

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gfields
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Date Joined Oct 2015
Total Posts : 828
   Posted 10/12/2017 7:29 PM (GMT -6)   
I have been taking abx for 5 years, and I have seen 0 improvements. I may be a little bit better than when I first became ill, but not much better. I think my problem lies more with a suppressed immune system, or a disfuctionaly immune system, than actively having a spirochetal infection. I think a lot of people fall into the boat that I'm currently in. The abx just don't resolve the problem, no matter how long you take them.

So I wonder if there's a different approach that needs to be taken for people like me. I am also wondering if there are doctors out there who treat lyme from an immune suppression point of view, rather than a bug killing point of view.

I have a suspicion that I should be treating this disease with similar methods that people in the HIV community may treat their disease. I'm not sure if there's any doctors out there who really provide an immune system approach towards treatment. Has anyone heard of a doctor that does this?

...

I wonder if it is a cytokine storm problem:
http://www.treatlyme.net/treat-lyme-book/cytokines/

...

Here's an interesting article too:
http://steveclarknd.com/?page_id=2

Post Edited (gfields) : 10/12/2017 7:34:46 PM (GMT-6)


Girlie
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Date Joined May 2014
Total Posts : 26428
   Posted 10/12/2017 7:44 PM (GMT -6)   
gfields - 5 years without improvement - so sorry!

You know that Dr. J. in Washington, DC is an ID Dr. and prior to lyme he pioneered a treatment approach for HIV/Aids patients?

His protocols for lyme and co's are based around pulsing and 'drug holidays' to let the immune system 'kick in'.

But, he does believe that the infections need to be targeted aggressively.

So, he understands the immune issues that HIV/Aids patients have, and also the lyme and co's infections.

Did you ever do a pulsing approach...with a week or two off at a time?
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

Moonchez
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 10/12/2017 10:02 PM (GMT -6)   
I actually went to see my ND about this today and this was literally our discussion.... as they can't actually tell if I have lyme based on my Armin Lab results (anything looking for an immune response...good luck) or whether my CD57 is so low (25) due to (a) cytokine storm.

I also have a huge viral load.

After her discussion with Dr. A... she recommended that I take something called Transfer Factor: Multimessenger by Researched Nutritionals.

Still figuring out how to get it... but I'll let you know when I do.

The Dude Abides
Regular Member


Date Joined May 2017
Total Posts : 339
   Posted 10/12/2017 10:11 PM (GMT -6)   
Moonchez said...
I actually went to see my ND about this today and this was literally our discussion.... as they can't actually tell if I have lyme based on my Armin Lab results (anything looking for an immune response...good luck) or whether my CD57 is so low (25) due to (a) cytokine storm.

I also have a huge viral load.

After her discussion with Dr. A... she recommended that I take something called Transfer Factor: Multimessenger by Researched Nutritionals.

Still figuring out how to get it... but I'll let you know when I do.


I found it here: www.mysupplements.store/transfer-factor-multiimmune

Moonchez
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 10/12/2017 10:33 PM (GMT -6)   
Hahaha aren't crossed out prices supposed to be MORE than the one it ends up being?? WHAT THE?? Haha... but I think you're right. I think Multimessenger is maybe the old name or the European branding of the product? Its called Multi-Immune now.

The Dude Abides
Regular Member


Date Joined May 2017
Total Posts : 339
   Posted 10/12/2017 10:56 PM (GMT -6)   
Hahaha - I saw that price discrepancy, too, right after I posted the link. That's completely bass-ackwards!

"Normally, we sell this product for $19.25. Today, however, it's on sale for $49.25!"

drrajpatel.net/images/Pharmacy/ResearchedNutritionalsOrderform.pdf ($44.98 + Shipping)
www.forresthealth.com/transfer-factor-multi-immune.html (47.00 + Shipping)
/www.treatlyme.com/Researched-Nutritionals-s/106.htm ($44.98 + Free Shipping)

The Dude Abides
Regular Member


Date Joined May 2017
Total Posts : 339
   Posted 10/12/2017 11:01 PM (GMT -6)   
By the way, here's something else I recently learned about from my LLMD:

ProBoost Thymic Protein A
/www.amazon.com/dp/B0002HS80K

"The thymus is a small gland located behind the upper chest area, which is important in proper immune function. This gland peaks in size at puberty, then begins steady involution (shrinkage), eventually becoming incapable of producing certain proteins the immune system needs. All white blood cells (WBCs) originate in the bone marrow. Most WBCs are biologically active as soon as they are released from the marrow, but WBCs called T cells are not. Once released from the bone marrow, T cells need to travel to the thymus gland to receive proteins manufactured by that gland for activation. This is why they are called T cells T stands for thymus.The T4 (CD4) Helper cell is the manager of the immune system. It is one kind of WBC that needs a thymic protein to be activated. Without a specific protein (protein A), the T4 cell cannot function, and immune activity suffers.ProBoost Thymic Protein A supplies the missing thymic protein and activates the T4 Helper cell."

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/13/2017 12:15 AM (GMT -6)   
Moonchez said...
I actually went to see my ND about this today and this was literally our discussion.... as they can't actually tell if I have lyme based on my Armin Lab results (anything looking for an immune response...good luck) or whether my CD57 is so low (25) due to (a) cytokine storm.

I also have a huge viral load.

After her discussion with Dr. A... she recommended that I take something called Transfer Factor: Multimessenger by Researched Nutritionals.

Still figuring out how to get it... but I'll let you know when I do.


Moonchez - didn't your Armin lab test show weak positive for Borrelia? What about the co-infections?

- and if it is a cytokine storm..what's causing it? Lyme is one reason.

If the test results are IND. - and you can't treat based on those results...then maybe you should do the Igenex WB and see what bands show up.

Have differential diagnoses been ruled out? What else could it be?
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

Moonchez
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 10/13/2017 2:31 AM (GMT -6)   
Girlie - Hi! I've been meaning to email you! Rough week sad

Nope, negative for everything except for EBV and Coxsackie Virus.

In rereading to this point, you're right, I should clarify that they both think that its possible that the cytokine storm COULD be caused by Lyme, but my ND, Dr. A from the lab and Dr. Z who I saw last week all think that until I get the viral mess cleared a bit more, figuring out what came first - the chicken or the egg - is pointless. ie. Lets treat what we CAN see and then see what's under it.

Cytokines are REALLY interesting to me because of my LP protein being so high.

Also, I really love that I opened the video and bam there's Dr R from Seattle. Lol.... something about the stars aligning on that one...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 10/13/2017 2:54 AM (GMT -6)   
Well, it certainly won't hurt to go after those viruses...and see where you're at after that.
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

Moonchez
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 10/13/2017 3:01 AM (GMT -6)   
Dude - I'm taking something very similar for my Thymus. Honestly about a month ago my lymphatic system was a disaster, that stuff has done WONDERS.... that and my wet sock therapy. Honestly, probably the best treatment I've done so far. Lol.

Girlie - I agree. I think that's the funny thing about Lyme (and why that audio yesterday was strangely comforting to me)... everybody's different. And we all want to race to get better but sometimes its about just clearing the next thing that's in front of us and being patient. At least that's what I'm telling myself this week LOL. I had a rough go on the 7th when I hit my 2 year mark.... which I know isn't that long compared to others but its been a ROUGH two years in and out of hospitals and neurologist consults and I'm still not even diagnosed. So I had to tell myself something....

Ask me again tomorrow and the puddle (of tears) might be mine.

Hope you're well <3

gfields
Veteran Member


Date Joined Oct 2015
Total Posts : 828
   Posted 10/13/2017 4:41 AM (GMT -6)   
That's very interesting about the Thymus. I did not know that. So those supplements are supposed to help increase Protein A?


Thanks Girlie - I will look up Dr. J in Washington. That sounds interesting. I think the immune suppression approach might be promising. I think I might get an HIV test too, just to see what happens there. I had one quite awhile ago that was negative, but I guess it's worth a shot anyways. They're supposed to be quite accurate, but who knows. I also just learned that they have HIV home testing. It just requires swabbing the inside of your mouth. No blood. That's interesting.

Post Edited (gfields) : 10/13/2017 4:44:53 AM (GMT-6)


magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 880
   Posted 10/13/2017 6:49 AM (GMT -6)   
Check out Dr. Yu in St. Louis-his clinic name is Prevention and Healing

Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 235
   Posted 10/13/2017 7:05 AM (GMT -6)   
gfields said...
That's very interesting about the Thymus. I did not know that. So those supplements are supposed to help increase Protein A?


Thanks Girlie - I will look up Dr. J in Washington. That sounds interesting. I think the immune suppression approach might be promising. I think I might get an HIV test too, just to see what happens there. I had one quite awhile ago that was negative, but I guess it's worth a shot anyways. They're supposed to be quite accurate, but who knows. I also just learned that they have HIV home testing. It just requires swabbing the inside of your mouth. No blood. That's interesting.


I hope she doesn't mind me mentioning her, but Peteza has an article linked to her sig that talks about a natural approach to healing that I think you may find interesting.

/rawlsmd.com/health-articles/what-you-dont-need-to-do-to-beat-lyme-disease?utm_medium=content-marketing&utm_source=facebook-adv&utm_campaign=what-you-dont-need&utm_content=rmd-90

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 645
   Posted 10/13/2017 7:34 AM (GMT -6)   
OMG. 5 years? If it were me, I would seek out a traditional Chinese Medicine doctor, born in China, trained in China (not one of the schools in the US) who comes from a family of Chinese Medicine Doctors and makes his own tea. They treat the whole body. They also treat your emotional constitution and it's a very interesting experience. I went to Denver to help my son after knee surgery and decided to see one for two weeks. He gave me the tea and said "In Chinese medicine, we build a fence, then we open the gate, then we kick the dog out!" The first day, I was on the toilet all day but not in an unpleasant way. I went in and he said "Good, toxins releasing". The next day, I was full of bartonella scratches and he said, "good, very normal." The next day, I couldn't stop crying and he said, "Very normal, virus releasing. The third day I said "I hate my husband!" He patted my hand and said "Very common. Virus releasing from liver.". This went on for two weeks. By the end of the two weeks, I went from laying around with no energy to being able to jog across the street. I wished I could have rented a condo and stayed. Think he would have cured me. He sent me home with 3 weeks more of tea and I really made lots of progress.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 235
   Posted 10/13/2017 2:08 PM (GMT -6)   
cr3ativegirl said...
OMG. 5 years? If it were me, I would seek out a traditional Chinese Medicine doctor, born in China, trained in China (not one of the schools in the US) who comes from a family of Chinese Medicine Doctors and makes his own tea. They treat the whole body. They also treat your emotional constitution and it's a very interesting experience. I went to Denver to help my son after knee surgery and decided to see one for two weeks. He gave me the tea and said "In Chinese medicine, we build a fence, then we open the gate, then we kick the dog out!" The first day, I was on the toilet all day but not in an unpleasant way. I went in and he said "Good, toxins releasing". The next day, I was full of bartonella scratches and he said, "good, very normal." The next day, I couldn't stop crying and he said, "Very normal, virus releasing. The third day I said "I hate my husband!" He patted my hand and said "Very common. Virus releasing from liver.". This went on for two weeks. By the end of the two weeks, I went from laying around with no energy to being able to jog across the street. I wished I could have rented a condo and stayed. Think he would have cured me. He sent me home with 3 weeks more of tea and I really made lots of progress.
Ever since I moved into my house over 10 years ago, I pass a house on the side of a busy road on the way to my house. A lady lives there and runs a traditional Chinese medicine and acupuncture business. Since reading this post earlier today, I called her and am seeing her for a consultation tomorrow. She told me over the phone that she is currently treating a patient with Lyme disease. I looked her reviews up on Google, and she gets outstanding reviews overall.

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 645
   Posted 10/13/2017 2:17 PM (GMT -6)   
Hoagie- Wow, that's great news that she's so close and a good one. Please keep us posted! It's definitely an avenue to explore! The guy told me in China, when a person is sick, they go to the doctor every day until they are better. I'd be interested in hearing how she schedule you.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2411
   Posted 10/13/2017 2:22 PM (GMT -6)   
>>I think that's the funny thing about Lyme (and why that audio yesterday was strangely comforting to me)... everybody's different. And we all want to race to get better but sometimes its about just clearing the next thing that's in front of us and being patient.

BINGO you win a prize! I believe very strongly in this also.

To me I think most supplements are hogwash and a big waste of money. Sure there are people who need it like for thyroid issues and such but when an LLMD loads you up on all these things its usually a waste of time.

Now what isn't such a waste is if you do a 23andme genetic test and have a doctor evaluate it and develop a custom supplementation program to address your weak areas and overall deficiencies. This is targeted specifically to the individual so makes more sense and has more benefit that supplementation napalm and see what sticks.
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