Suggested Treatment plan. Thoughts please ?

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Lemnia
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Suggested Treatment plan. Thoughts please ?

Post by Lemnia » Tue 28 Jul 2015 20:26

Wondering if anyone can give me guidance please. I have been very ill (housebound, lost my job) for nearly 3 years now. I live in the UK now but lived in CT for 28 years. Firstly diagnosed with CFS then 4 months ago I sent my blood to Armin Labs in Germany I tested positive for Borrellia Bergdorferi Lyme and EBV ( I did not test positive for co infections of Bartonella, Babesia or Rickettsia).

Dr. Armin Schwarzbach from Armin Labs suggested the treatment in the document I have attached. Can you please advise me if this seems a good way to start treatment?? I have not taken any antibiotics since becoming ill ( I am allergic to penicillin and have become very sensitive to drugs since I became ill).

I am hoping you can guide me. I have to do something as I'm so ill.

Regards

Karin
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TherapyplanMultipleInfections-5 Dr. Armin Schwazbach.pdf
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ChronicLyme19
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Re: Suggested Treatment plan. Thoughts please ?

Post by ChronicLyme19 » Wed 29 Jul 2015 0:00

Just a disclaimer I'm not a doc...

Both the azithromycin and minocycline are standard in treating Lyme and co-infections, at least with the LLMDs. Both have helped me greatly. Minocycline is thought to have good penetration into the central nervous system. Response to re-treatment with antibiotics after being chronically ill with Lyme and co-infections seems to vary by person, some find antibiotics very helpful and others not so much. I happen to be in the camp where it has given me my life back after nearly dying, so I hope antibiotics will help you too.

Be wary you might herx (initially it might make your symptoms worse before improving) and your body might need help clearing out junk from the infection war, so if the antibiotics initially makes your symptoms worse, you might want to ask your doc about options to help support your body's waste routes. I'd also suggest you keep in close contact with your doc. Antibiotics may make you herx, but at least it's my docs opinion that you can only push your body so far, and if your body isn't keeping up with clearing out the junk, they might need to be less aggressive with your treatment. So just keep that in mind, sometimes there is such a thing as being too tough and pushing your body too far, so listen to it closely. I'd also recommend keeping a daily journal, because it will help you and your doctor figure out much more quickly what treatments are stirring things up and which are helping. It also helps to see gradual changes that you might not notice otherwise.

There are also a number of other issues folks who have chronic lyme/co-infections run into that are discussed on this forum (co-infections, immune deficiencies (IgG/IgM), adrenal fatigue, sleep issues, thyroid dysfunction, POTS just to name a few) that your doc should be checking you for. You have to double check that all your body systems are working properly or else it'll be hard to get better. It's like having ten nails in your foot and pulling out one, it's not until you pull out all ten that you start feeling much better. Many times those of us who are chronically ill is because there are multiple things wrong. It might be Lyme, or it might be something else, it might be permanent damage, or it can be multiple things at once, so it's good to keep an open mind and follow all clues to recovery. I wish you the best of luck!
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Bogey123
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Re: Suggested Treatment plan. Thoughts please ?

Post by Bogey123 » Tue 18 Aug 2015 5:00

have you tried IV rocephin?

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ChronicLyme19
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Re: Suggested Treatment plan. Thoughts please ?

Post by ChronicLyme19 » Tue 18 Aug 2015 17:05

No, I've gotten by with high doses of multiple oral antibiotics instead. They've debated multiple times if I should do IV, given my psych symptoms, blurry vision and should blade winging (supposedly a cranial nerve issue). The MRI (without contrast) was clean, so they decided to try going the least invasive route first and going on double or triple high dose oral antibiotics (with lots of probiotics alternating of course). Two years of that plus Byron White herbs have seemed to get all of my symptoms under control.

It's up to you and your doc to make a judgement call to see if your symptoms are bad enough to warrant the IVs.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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LHCTom
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Re: Suggested Treatment plan. Thoughts please ?

Post by LHCTom » Mon 24 Aug 2015 20:50

I'm also not a doctor but the antibiotics schedule seems rather standard and I might question whether Dr Armin is the best adviser for treatment? Plus it might make sense to be sure their Elispot results are accurate. Do you have your test results? The implementation of the Elispot seems to be a large variable in whether its useful. On one hand, the basic approach is one of the FDA approved US TB tests. On the other hand, TB and Borrelia are very different and T cell based tests ave had a checkered history. I wasn't able to find any specific validation or even the source of the Armin Labs Elispot test. Its not clear whether its an internal test or provided to them. With a CT history, you certainly lived in a high risk area. Were you ever tested using other techniques such as the standard ELISA, C6, or have Western Blot results from a good lab?

I read a press release from Armin Labs that seems very deceptive. It reads as though the FDA and CDC have approved a Bb test based on their Elispot but when you read it carefully, it says the "technique" and not their test is approved for TB. There is a huge difference between a TB Elispot implementation and their Bb test. Maybe I'm too critical but just claiming the "technique" is approved just doesn't seem ok. There is a large difference between any 2 Elispot so the fact its approved for TB means nothing. Its like saying their ELISA is great because the FDA has approved Bb ELISAs which most people would laugh about.

You may very well have Lyme but I would want to be sure so your history, bite history, rash history, test history, symptoms etc.. should be considered and the find a good doctor up on the best treatment protocols rather than using this schedule. I know what its like to be ill and how easy it is to be pulled into a diagnosis as I've been diagnosed with CFS, Lyme and a few others.

There are many issues with Lyme testing but if you can afford it, cross checking is always a good idea. The main downside to any long term antibiotic trial ( which is an empirical test) is its effect on your microbiome ( gut microbe population) which in my case is at the top of my list of metabolic abnormalities. Your microbiome is essentially an organ that plays a critical role in your metabolism which almost always is disrupted by a chronic illness such as CFS.

So it would be great to hear more about the details above and I would suggest looking into antibiotic treatment protocols beyond Dr Armin as you are doing. Many of the protocols use pulsing antibiotics such as the classes you mention such as 5 days on and 5 days off as one example. If the persister theory of chronic Lyme is legitimate, pulsing makes sense and is consistent with recent in-vitro studies by Zhang, Lewis etc.. as the off period allows the persisters to awake. Nobody has done good studies as to whether pulsing is effective in-vivo ( in a human versus test tube ).

http://www.ncbi.nlm.nih.gov/pubmed/25806811

http://www.ncbi.nlm.nih.gov/pubmed/26038747

http://aac.asm.org/content/early/2015/0 ... 5.abstract


http://www.arminlabs.com/en/tests/elispot
Borrelia EliSpot antigens:

Borrelia burgdorferi Fully Antigen: Borrelia burgdorferi B31-reference strain (Borrelia burgdorferi sensu stricto)
Borrelia burgorferi Peptide-Mix: OspA from Borrelia b. sensu stricto, Borrelia afzelii, Borrelia garinii + OspC native + DbpA recombinant
Borrelia burgdorferi LFA-1 (Lymphocyte Function Antigen 1): Own body protein + Borrelia burgdorferi sensu stricto (shared epitope). Often associated with autoimmune diseases: collagenosis, Rheumatoid Arthritis, vasculitis (ANA, CCP-antibodies, ANCA)
Explanation: Native = cultured antigens/ Recombinant: genetic technology produced

Reflecting the current T-cellular activity of Lyme disease:

Indication for a currently active Borrelia burgdorferi infection in cases of furthermore positive EliSpot after the end of therapies
T-Cell-Spot/IGRA has been approved by the FDA in May 2011 for M. tuberculosis:
"… A positive result suggests that an infection is likely, a negative result suggests that an infection is unlikely…” “…Results can be available within 24 hours…”

EliSpot: New T-Cell Test a “Game Changer” for Lyme disease:
… The sensitivity of EliSpot is estimated at 84%, and the specificity is 94%...
… EliSpot assays provide robust, highly reproducible data…
… EliSpot can be retested for the acquisition of additional information in follow-up assays…
… the two assays systems (EliSpot + CD57-cell count) compliment each other in the quest to understand T cell-mediated immunity in vivo….

Lehman PV et al.: Unique Strengths of EliSpot for T Cell Diagnostics in: Kalyuzhny AE. Handbook of EliSpot: Methods and Protocols, Methods in Molecular Biology, Vol. 792. 2nd Ed: Springer; 2012: 3-23
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/
The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment

Results of Validation Studies of the Borrelia-LTT

http://www.ncbi.nlm.nih.gov/pmc/article ... /table/T1/
The results of our study differ in part from some published data which show a low specificity of the Borrelia-LTT [24, 25]. This is very likely due to methodology. The addition of interferon-α to the cell culture medium inhibits nonspecific proliferation of lymphocytes and promotes the function of antigen-presenting cells. This improves the discriminatory power of positive and negative LTT results, even though the SI values of the positive reactions and the blank values are lower than in assays without interferon [23]. Another modification is the use of polymyxin B for the elimination of nonspecific activating lipid groups from the Borrelia lysates and traces of LPS from the rOspC expressed in E. coli. In this way, common, nonspecific borderline and weak positive LTT reactions were eliminated (data not shown).

Of great importance are the selection and especially the dosage of the Borrelia test antigens. Lysate antigens, kindly provided by Seramun (Heidesee), were specially purified for the ELISA test and showed no positive reactions with negative control sera. Nevertheless, the presence of Borrelia-nonspecific proteins in the lysates that may cross-react with other bacterial species may be unavoidable.

http://immunospot.com/index.php?id=233& ... fgodFGwH6A

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901091/

Can ELISPOT Be Applied to A Clinical Setting as A Diagnostic Utility for Neuroborreliosis?
The ELISPOT assay showed a weak diagnostic performance with a sensitivity of 36% and a specificity of 82%. The findings in this study show that this ELISPOT-assay modified to be feasible in clinical routine laboratories is not useful as a supplementary diagnostic tool in the laboratory diagnosis of patients with clinically suspected LNB.
http://www.ncbi.nlm.nih.gov/pmc/article ... s-02-00607
An Enhanced ELISPOT Assay for Sensitive Detection of Antigen-Specific T Cell Responses to Borrelia burgdorferi


http://www.ncbi.nlm.nih.gov/pubmed/3054554

Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.
Dattwyler RJ1, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
Author information
Abstract
The diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients. We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed. Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls. The patients had a vigorous T-cell proliferative response to whole B. burgdorferi, with a mean ( +/- SEM) stimulation index of 17.8 +/- 3.3, similar to that (15.8 +/- 3.2) in 18 patients with chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects (3.1 +/- 0.5; P less than 0.001). We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease.
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amr
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Re: Suggested Treatment plan. Thoughts please ?

Post by amr » Wed 26 Aug 2015 2:46

I would think, Lemnia, that he'd want to pulse something like Fluconazole into this protocol.

I can't find the Research Abstract from approx 2005 from Germany on Fluconazole -- even given alone for a month for Bb.
I know it helped me and was later also pulsed into my heavy ABX & anti-malaria oral protocol.

All the Best to you as well!

Camp Other
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Re: Suggested Treatment plan. Thoughts please ?

Post by Camp Other » Wed 26 Aug 2015 4:22

amr wrote:I would think, Lemnia, that he'd want to pulse something like Fluconazole into this protocol.

I can't find the Research Abstract from approx 2005 from Germany on Fluconazole -- even given alone for a month for Bb.
I know it helped me and was later also pulsed into my heavy ABX & anti-malaria oral protocol.

All the Best to you as well!
Hi amr - I think you meant this abstract:

http://www.ncbi.nlm.nih.gov/pubmed/15337633

Eur J Med Res. 2004 Jul 30;9(7):334-6.
Clinical effects of fluconazole in patients with neuroborreliosis.
Schardt FW1.

Abstract
Eleven patients with neuro-borreliosis had been treated with 200 mg fluconazole daily for 25 days after an unsuccessful therapy with antibiotics. At the end of treatment eight patients had no borreliosis symptoms and remained free of relapse in a follow-up examination one year later. In the remaining four patients, symptoms were considerably improved. At the end of therapy immune reactivity (IgM+) disappeared in three patients. Since borrelia spp. are almost exclusively localised intracellular, they may depend on certain metabolites of their eucaryotic host cell. Inhibition of P450 and other cytochromes by fluconazole may incapacitate Borrelia upon longterm exposure.

amr
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Re: Suggested Treatment plan. Thoughts please ?

Post by amr » Wed 26 Aug 2015 17:12

Yes, Camp Other - That's the fellow. Thank you!

I found the pdf, finally ... http://www.daignet.de/site-content/die- ... .9/334.pdf

There's also an interview with Dr. Fritz Schardt here - http://sci.tech-archive.net/Archive/sci ... 00133.html

We did try it alone at 200 mg a day for 30 days and it did help and then again with the rest of my LLMD's protocol and I felt it was a safer way to go about it - as some of us are more prone to candida [thrush, etc] or other yeasts, even without ABX.


Thank you again!

Sciucca1
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Re: Suggested Treatment plan. Thoughts please ?

Post by Sciucca1 » Fri 4 Sep 2015 14:29

Hi to all,

I was given the flucanozole treatment, with very very strong herxs. About one year latter, I was symptom-free. I has been very ill for more than a decade before I started this, with mutliple antibiotics before. Unfortunatelly, I did relapse two months latter, but this treatement was very effective.
Best

Philippe

amr
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Re: Suggested Treatment plan. Thoughts please ?

Post by amr » Fri 4 Sep 2015 17:24

Welcome, Philippe! It's good to hear that this drug worked for you as well. Thank you for reporting this.

The only thing that I do now is try to boost my immune system, and other than the Vitamin C in pure powdered form and other common supplements - I'm still researching other natural ways to build my body's own strength and defense. But admittedly - my main course of action is to DISTRACT in any number of ways from how I feel and what I've lost - but I joined here because there's good members and info here and I do believe that my dearest brother has ALS because of the Lyme vaccine and not that long after their vaccine - a hospital stay for ehrichliosis.

I don't believe the people that had the vaccine are able to develop the antibodies - nor many of us that had Bb for a long period of time before being tested and the antibiotics were given too late and given the wrong ones and in too short of a course.

I also get quite disgusted at the so-called public service announcements, and the such, that gave and still do give minimal descriptions of what or how an infection manifests. In my case and in others, it boiled right down to misinformation and we were told that only if you have the bullseye rash and either flu-like symptoms or joint pain, then you may consider being tested ... but they knew & know better and withheld the further details.
Mean while - countless children have been affected - some for life - and parents that need to keep working somehow to support their family aren't making it.

The other main travesty of justice is their chosen test & treatment protocol - despite how long a person has been infected and lastly - that we have to pay out-of-pocket for the medical help & understanding that we need, when we don't have that sort of money. The same goes for most CFIDS literate Drs.


Well, thus ends my gripe session for this month and though I do take this topic very seriously and mainly for children and the bread-winners out there - I still totally rely on boosting my immune system and distracting from this topic through many other research interests and have found that empathy for those worse off, really helps me tremendously. Empathy does go a long way.

All the very best to you & yours, Philippe and to all the other care-ers here!
God Bless!

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