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Hello, Dr. Binder.  I had seen and read that hypothesis, too, and found it so interesting that I sent it to my MDS.  He replied that 99% of the time, hypotheses are rejected.  What do you think (and may I ask what your doctorate is in?).  I would be very interested to get your thoughts on this.Thank you.

Linda

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Hi Linda:

I am a PhD. I realize that 99% of the time hypotheses are rejected, but I think this one might just be the 1% that cannot be. All I can say is that there is much to be said regarding a chronic infectious etiology for Parkinson's, the main question being which chronic infectious disease? The argument for this is clearly laid out in studies such as the recent review article What James Parkinson Really Thought was Behind Parkinson’s Disease which can be found at https://scientiaricerca.com/cons-articles.php  as well as studies like Anthony Fink's at UC Santa Cruz. Also in July, 2017 Emery et al came out with a study done at the University of Bristol in the UK which might seem unrelated since it deals with Alzheimer's but really is not. Often tissue samples of Alzheimer's disease mimic those found in Parkinson's, and clinically patients with Alzheimer's often share symptoms with those of Parkinson's. Emery's study showed a 5 to 10 fold increase in microbes in the Alzheimer's brain which are related to the same order and family (Actinomycetales; actinobacteria) that Berstad and Berstad recently subscribed to as the most likely cause of Parkinson's. By 1911, Alzheimer himself realized that one infectious process in the brain could manifest it as two different diseases, and there are those that feel that Parkinson's is a manifestation of the same disease process which merely concentrates its attack on the substantia nigra and surrounding tissue areas. There is an interesting video on the subject of chronic infectious disease and Parkinson's which you can view by going to https://vimeopro.com/user60766261/richard-melvin-an-artists-journey-into-parkinsons/video/203722203The Michael J. Fox Foundation has also in the past shown interest in research related to the mycobacteria in the Actinomycetales as well (https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=1310)  although I am not certain what the outcome of this trial was. Hope this sheds some light on the issue.

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Thank you for your very-well-cited post and information.   I have tended to think along the same lines you do, and I think my internist may also.  I deal with several chronic, serious, progressive medical diagnoses for which no known cure has been found.  My internist several years ago was pondering the possibility that they could all be related to the same cause.    I read a lot on my own about these diagnoses and find similarities that I think important but have no doctor with which I can discuss them.  At Hopkins (where most of my doctors are located), they work tirelessly in their specialty fields and always with an overload of patients.  I've been so grateful for having access to them.  But the downside is that most do not have time to ponder over the things I've found.  I just don't know who to go to who would look objectively at what I've found.  One of my conditions has taken over 10 years for a grass-roots group to prove that it is a real condition and not one that is imagined.  It is very hard to have had doctors push it aside and look at me as though it's all in the mind.  It's insulting, really, as my friends and family know I'm down-to-earth and realistic.  It's also improper of those doctors to give such a diagnosis when they have not been trained and certified to do so, nor have they even taken samples for lab testing.  The CDC did a flawed study of the condition a number of years ago and concluded there is no physical basis for it.  The grass roots group with the help of university-based research has debunked that, and the condition is now included in the NIH's registry of legitimized orphan diseases for which there has been found proof of a scientific basis and pathogen but for which the complete etiology has not yet been found.

I posted an article this morning somewhere here in the Forum that speaks of misfolded proteins and alpha-synuclean both being involved in both Alzheimer's and PD, and I know that those can cause all sorts of problems health wise.  Prions--something the government doesn't want to even think about.  I have gotten so discouraged with not finding help that I've decided it's not worth it to spin my wheels any more.  With time and the relentless research that is going on by people who know what they are doing, I think things will eventually be better understood for many of us with the various health challenges we have.

In spite of our difficulties with Parkinson's and other things, it is all very interesting to read about, isn't it.  I'll look forward to reading the sites you've given above.  Thanks so much for taking the time to share your thoughts and the references.

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I read the first article about whatt James Parkinson thought was really behind Parkinson's Disease and found it very interesting.  I am bookmarking the rest to read a little at a time.  There is a lot of good information.  From what I understand, some of the leaders in Parkinson's Disease do read the posts in Parkinsons forums, and I think these may especially be interesting for them to read.  My major in college was Bible, so I can't understand a lot of what the articles mean, except in general. :-)   I do definitely see some some commonalities in some of my medical issues other than just Parkinsons, like mycoplasma, polyosaccarides, and some others.  Enough to realize that what we are dealing with in having these microbes is extremely difficult to deal with!

Thanks so much for sharing.

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And thank you for sharing as well Linda.

I do not subscribe to the Prion theory of proteins turning infectious by misfolding. Nor do I put too much stock in those who say mycoplasma is behind various disorders. However I do like to read the Bible. Be well.

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I'd be so interested in why you feel as you do re: the prion theory?  (And is it just a theory?) I recently read an article that had an illustration of what a prion looks like (totally different than I would have thought) and what a "misfold" in it looks like and does.

I'm not sure my understanding of mycoplasma is correct, but I'm surmising that it is an overall term for pathogens that have no cell wall (gram negative)?  And that they therefore can hide within blood cells because of that and also can surround themselves with a substance that protects them when they are free floating?  This seems to be a basic belief in so many research articles I've read.

It's refreshing to hear someone likes to read the Bible!!

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Regarding the prion theory, and theory is just what it is, you might want to take a look at this: http://www.slate.com/articles/news_and_politics/hey_wait_a_minute/1997/10/nobel_gas.html

Of course where there is serious infection which goes under the radar of our present diagnostic capabilities, there is going to be misfolding of proteins. But the larger question is whether such proteins magically become infectious or are merely a by-product of underlying disease. I will go with the latter.

And as for mycoplasma, your understanding is 100% correct and therein lies the rub. They are pathogens with no cell wall. They are also easily erased with macrolide antibiotics. There are much more serious and credible pathogens whose preferred form is cell-wall-deficient (CWD) and according to Mattman,  mycoplasma can easily be mistaken for cell-wall-deficient mycobacteria like tuberculosis, a much more devastating microorganism.

Best regards and have a great day.

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Well, I'm totally confused.  :blink:  I need to read into this all in the a.m.  There are so many similar names for things...like mycoplasma and mycobacteria.  I'll be reading about those tomorrow.  Thanks for pointing that out.  Good stuff.  Especially want to read about macrolide antibiotics, which I haven't heard of before.

Have you any information you can share about tick-related diseases that are not Lyme but that have the same pathogens involved--e.g., the borrelias, babesia, bartonella....and possibly (arguably) agrobacteria?  And possibly some sort of protein involvement?

Not asking much, am I...!

I appreciate the information you've sent.  Thanks so much.

 

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Frankly, at this point I share in your confusion. Obviously you are getting at the manifestations of a disease which you have in mind which includes both Parkinson’s manifestations and tick- related disease for which you have been seeking an answer. Some of these answers (prion disease, mycoplasma) at the moment I find irrelevant. However giving bits and pieces of the clinical (and perhaps laboratory) manifestations of a disease is not the best way to go about answering things.

What is needed here is a complete clinical history, including symptomatology from the very beginning, and all relevant laboratory, serological and radiological evidence to substantiate whatever diagnoses have been handed out. For example to this point I can ascertain that Lyme disease assays have been negative, but has there been any direct proof of borrelia, babesia, and/or bartonella?

Also, all that is in the popular Western notion of what constitutes tick-borne disease is not complete as can be seen here: https://www.ncbi.nlm.nih.gov/pubmed/?term=Blagodarya%2C+blekhman+the+role+of+ticks+in+the+transimission+of+tuberculosis+mycobacteria+Veterinaria+1971

As for macrolide antibiotics, an example is azithromycin (Zithromax) used in both Lyme’s disease and in the treatment of some of the non-Lyme’s organisms mentioned. But azithromycin also has anti-mycobacterial activity and is a first line treatment for Mycobacterium avium or fowl tuberculosis.

Hope this helps.

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Dr. BInder, I really appreciate your input.  I'm wondering if your Ph.D. is in the biosciences?  Medicine?  Research?  Writing?  I hope you don't mind my asking.  You seem so well versed in what you have shared.  And I'm very appreciative of it.

Also, I'm thinking you may not be from this country.  :-)  You speak of "the Western notion" as though you may not be from the West.  :-)   And the citation--which I'd love to read--from the NCBI.NIM.NIH in Pub Med--seems only to be available in Russian.  I am not a member of Pub Med but can usually pull up things without being one; however, in this case I cannot locate a translation from Russian. Maybe only a member can do that.

Please don't let me make you feel uncomfortable if you choose not to disclose answers to anything I've asked if you'd rather not.  And I know I may be way off on some of this conjecturing.  It's all meant in good fun as well as in real interest of knowing.  You're a part of our "family" here now, and you'll find that we are for the most part a pretty open (and caring) group, but we do respect each other's limits on what they want to share and not share.. 

Back to the tick testing issue..It's only been in about the last year or two that the standard testing methods for Lyme Disease have been updated.  The Lyme Disease Society of America (LDSA) would not budge on updating them until the International Lyme and Associated Diseases Society (ILADS) formed and with time proved that their updated methods were more reliable.  I had at one time gone for the old testing (before the newer testing was available in this area), and you are correct that the tests came back negative, which was often the case with the older testing.  What I have been planning to do is have my blood drawn and sent to the grassroots group that is associated with ILADS, and they will ensure it gets tested for the Lyme pathogens at the most reliable labs. And "yes" to your question about whether there have been symptoms of borrelia (which strain, I do not know) and either bartonella and/or babesiosis (whichever is the one that leaves straight red lines sometimes on the skin that look like scratches but that aren't).  Because I have a little bit of a complicated medical picture, I've kind of been dragging my feet on getting testing because of already taking several meds to control PD, polycythemia rubra vera, depression, and use some over-the-counter meds/supplements as well.  Potentially adding antibiotics, though welcomed if needed, really concerns me.  I would need to take long-term antibiotics, so it wouldn't be just a short and quick thing.

I hope all I've typed above is accurate.  It is typed as I've remembered, and since I have a Parkie brain now, you might want to verify the contents of the paragraph.  And that only if you want to.  I don't have expectations of your doing it if you'd rather not or are time constrained.

Take care.

Linda Garren

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jb, would you like us to move our posts about this particular subject to a different thread since we've gone off into kind of a different direction than what your wonderful thread is for?  Just let us know. 

Edited by Linda Garren

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Linda-You're fine in this thread.   This is not jb's "Good Morning" thread.  Unless I've misunderstood I think that's what you're concerned about.  

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Thank you for that, Peace. I believe that this thread is just where it should be and that it will prove, in the end, to be relevant to its opening topic.

Linda there is a book called How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease published by St. Martin’s press on February 14, 2017 by Richard Horowitz, MD, who treats Lyme and related organism routinely. The treatment for every Lyme related microorganism you've mentioned is addressed in his book. Once you have read through this (It is on Google books) I will try to explain why what he says could possibly open-up new horizons to Lyme sufferers (or Lyme/Parkinson sufferers). Glancing through it, I saw that he even has one case of a female Lyme victim with Parkinsonian symptoms in there not unlike yours. Please read that section carefully. He mentions pretty extensively on the use of the following medicines that are first-line antimycobacterial agents which include Pyrazinamide, Rifampin, INH and even at times myambutol all for TB. In addition he talks about the use of Dapsone (which can be a highly toxic drug and is used for Leprosy). I am not a fan of Dapsone, but he has had good results with it. Nevertheless,he mentions that many Lyme sufferers show significant improvement with just Pyrazinamide, Rifampin, etc without the Dapsone. Why are these drugs being used? First of all they have proved successful. Secondly, he claims that in combination with other drugs they take care of  Lyme's "persister" microbes. Personally I think there is more involved, but that is for tomorrow's research. Horowitz's work was in part stimulated by Ying Zhang, MD, PhD, a researcher at Johns Hopkins, who at one time was claiming good results with Lyme patients using Pyrazinamide, again to get at Lyme organisms that persisted.

As for the reference I cited on Pub Med, you can also see that same reference plus another one in

J. Kazda et al (eds.) The Ecology of Mycobacteria: Impact on Animals and Human’s Health. Springer Science & Business Media. June 10, 2010 522 pp. Page 214.

There two Ixodes ticks are cited which yielded mycobacteria, both in the reference I gave you plus another one:

[Beerwerth W, Eysing B, Kessel U (1979) Zentralbl. Bakteriol. [Orig A] 244:50-57.]

[Blagodarnyi I, Makarevich NM, Blekman IM [1971] Probl. Tuberk. 49:74-76]

https://books.google.com/books?id=d_xinfzC9o0C&pg=PA214&lpg=PA214&dq=ticks+infected+with+mycobacteria&source=bl&ots=iUd46CgpbD&sig=VqkIWZOplR_6i7m3Oc33L8M0L3U&hl=en&sa=X&ved=0ahUKEwjQ2PSmgs_WAhVLOiYKHbTlDtYQ6AEIPDAE#v=onepage&q=ticks%20infected%20with%20mycobacteria&f=false

 

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59 minutes ago, Peace said:

Linda-You're fine in this thread.   This is not jb's "Good Morning" thread.  Unless I've misunderstood I think that's what you're concerned about.  

Thank you, Peace.  Yes, I did think we were in jb's thread.  I appreciate your straightening me out!  :-)

 

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Dr. B., once again, thank you for all the information.  It's interesting that just last week I did visit Dr. Horowitz''s site, as I have heard of his reputation for having successfully helped some people who have my particular Lyme-related condition. At that time I had gone on line to order his book, but first I did some reviewing of some of his patients' experiences with him as their doctor.  Many good reviews of those he helped; some very negative reviews of his lack of consistency with those who needed his help when having problems from his treatments and not getting responses from him.   It turned me off to him.  But now that you've given me the name of someone at Hopkins who may be able to help or recommend someone who could help, it's a moot point about Dr. Horowitz.  In spite of those instances of not helping those patients, I'm appreciative of his having given help for so many.  And I know he is familiar with the particular kind of Lyme-related condition I have.   I will definitely get the book.  And I do know of people with my Lyme-related condition who also have Parkinson's.  I don't know them, but I have been told they are out there.  I'll really look forward to reading the section you recommended re: this.

Now I know who you are, Doc.  An angel sent straight from God. :-)   I've so, so needed all of the information you've provided, and most importantly who I might be able to see in consultation to help. And he "just happens" to be at Hopkins where I prefer to be under a doctor's care and where he would have access to my medical records and many of my other physicians.  Truly this is a God-send.  I was near giving up.  Thank you so much for giving me hope and a path to follow.

Here is someone else who may be a good contact for me who is with the LDA:  https://www.lymediseaseassociation.org/faculty-biographies/451-lda-conferences/lda-conf-2016/2016-conference-biographies/1538-tokarz-rafal  I'll look into reading his research and findings, also.  I'm very interested in finding out about the involvement of viruses, as that has also been something that I seem to fight constantly.  Any exertion or stress causes viral symptoms and additional profound fatigue and days wasted when all I can do is stop everything and sleep.

Please treat yourself to a hot fudge sundae from TCBY, with vanilla ice cream, hot fudge, syrupy nuts, marshmallow sauce, whipped cream,  and a cherry on top.  I can't think of anything better in this world to eat!  :-)  

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Dr. B, with Tom Price now out, I wonder if the following will still be established...??? 

HHS Intentions on Tick-Borne Diseases Working Group Announced

Details
on 11 August 2017

LDAUSALogo original loThe Lyme Disease Association announced that early today, July 14, the US Department of Health & Human Services (HHS) released its intent to establish the Tick-Borne Disease (TBD) Working Group called for in Section 2062 of the 21st Century Cures Act. The working group will assist HHS in its efforts to conduct and support epidemiological, basic, translational and clinical research related to vector-borne diseases, including tick-borne diseases. The working group will function as a Federal Advisory Committee and its activities will be overseen by HHS’s Office of the Assistant Secretary for Health.

Learn more

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Dear Linda:

Thank you for your kind words and informative posts. I am only here to help. No more no less. I have no other purpose. And if I didn't think I could help, I would not be here as I have many other projects pending. I understand that Johns Hopkins and Ying Zhang, MD, PhD is convenient to you, but be advised that long before I got wind of Dr. Horowitz's thoughts, which was basically only with your pushing and prompting, I was on the same track as what he is doing. How do I know that Ying Zhang is not the right man? Because I was in E-mail contact with him basically espousing what Dr. Horowitz is really getting at even before I knew the name Horowitz. And Zhang was rejecting my ideas after first sending me the E-mail: "Thank you for your mail. I would be interested. Please let me know what topic you have in mind and I'll see how we can collaborate. Best wishes" Well that never happened.

Do not make the mistake therefore of thinking that Zhang and Horowitz are in the same league, because they are not. Horowitz has gone far beyond Zhang, and if he were reading this thread, he probably would understand everything that has been put down here. I know you have read some good reviews and some not so good. But the man has a large burden to lift with many, many patients -not all of which are forgiving should he not give the hour or two explanation that some patients demand. Also, all medicines have side effects. If you take too much Tylenol you can slip into liver failure. That can keep somebody stressed for a long, long time.

Basically, and to put it in the simplest terms I know, just like we are subject to getting sick from microorganisms, so is the Ixodes tick. And once that organism is exposed to a virulent enough strain of a germ, when it bites it will transmit that germ to whomever it bites. I am also pointing out that the HHS Tick-Borne Disease (TBD) Working Group had better broaden their approach when it comes to tick-borne disease......although whether they do that or not is still in question. It can be proven in the laboratory, but only with sophisticated tests. And in order to order those tests one must approach things with an open mind - not always the case today. Something that might help them is a glance at studies like this.

Egyed L, Makrai L. Cultivable internal bacterial flora of ticks isolated in Hungary. Exp Appl Acarol. 2014 May; 63(1):107-22.

https://www.ncbi.nlm.nih.gov/pubmed/24366635

 

About half way down this abstract you will see this statement:

“The results show, that members of some genera are able to replicate inside the ticks (Mycobacterium, Bacillus) which can increase their potential risk. Isolated bacteria/tick ratio continuously grew from larvae to adults, indicating that larvae probably are hatched sterile, but later bacterial uptake from the environment and from the hosts increases bacterial contamination.”

There is more to be sure. But I will save it for later. Just as a preview when Burgdorfer, Hayes and Barbour did there second report on the Ixodes Dammini spirochete for the Journal of Bacteriology in June of 1983 they noticed a phage (viruses that live in bacteria) in this spirochete. This, they realized could very well have caused the pathogenicity of the spirochete, but the larger question was ....how did it get there? Phages or Bacteriophages can be transferred by one germ to another and often are. So was this a case of phage transfer from one germ to the Ixodes Dammini spirochete without which the spirochete would have been benign? Possible, very possible. And the nature of the phage offered clues as to just what this other germ might be. But that is for another time.

It is interesting to note that at one point I found myself in a phone conversation with Lida Mattman PhD, prompted by some Lyme advocates. Lida had a great and long-standing interest in Lyme disease. Lida was also at one point a Nobel Nominee, but for this phone conversation she was just "Dr. Mattman". I had always admired this lady greatly and soon saw the key to her greatness. Over the phone she was picking my brain for any and all thoughts I held regarding Lyme disease and the phage which made it virulent. Yet, like many scientists I held back in favor of  collaboration with an NDA (Non-Disclosure Agreement). So Lida as with Dr. Zhang unfortunately never collaborated. But now you have a much clearer vision of what my thoughts really were. 

Dr. B

By the way, please do go ahead and take that latest Lyme disease assay, you mentioned, just to be sure that it is negative. Thank you.

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Good morning, Dr. B.  Thank you for your packed-full post!  I need to set aside a number of hours at some point and read the many references you've given to absorb them.  And I'm very appreciative of your thoughts.  Sometime it would be so helpful to know of your background and training, as it would help give weight to the information you share.  And by that I'm not meaning that I don't believe you.  I just mean that is very important to have that disclosure to verify its source, especially if wanting to share it with others, like any doctors I may want to discuss your ideas with, just as you would most likely prefer when reading others' ideas. 

Just want to clarify about the reviewers I mentioned that gave concerning information about their experience with Dr. Horowitz.  I know that he feels exactly like you describe--and that he has an overwhelming number of patients and can't take hours with each.  However, the reviewers I mentioned had started on the heavy medicine combinations and were having reactions to them.  One of them who called in and asked to speak to Dr. Horowitz stated that he told her to come right in and see him.  She told him she lived 45 minutes away, and he said that was okay.  But when she got there within exactly 45 minutes, she was told he had left for the day, and the only thing he left for her was a form for her to sign that would release him from any responsibility. (Can't remember the exact name of the form, but I'm sure you know the one I mean).  This happened to more than just this one person.  I think this is quite serious and is a huge red flag.  Not something that can be ignored or reasoned away.

Also want to share with you some videos I've found.  For starters, here are some from Monday night that I found very interesting (and that you may/most probably already have read or know about!):  Eva Shapi on Borrelia and biofilms and a bonus video that I didn't know came with it by none other than....Dr. Lida Mattman!  :-)   (I almost did not go into the site that held the two videos because of the poster's poor writing skills that made me think he/she might not be giving real credible information.  Am I glad I overlooked that, because he/she posted two really good videos.  (Many thanks to that poster, and my apologies for prejudging them, but a heads up to them regarding how important it is that a post like that be written well and perhaps proofread before posting.  It would give what your post a much better chance of being read.):    Eva Shapi on Borrelia and Biofilms

You are more than likely familiar with Dr. Alan MacDonald's studies of Lyme Disease.  Here are three 30-minute videos of him explaining what he found.  We lost a wonderful person and researcher when he died a few years ago.

https://youtu.be/r8tESJVvM88--Part 1

https://youtu.be/2RATCS-3v9Q--Part 2

https://youtu.be/FEjNMlNM3l8--Part 3

 

 

Edited by Linda Garren

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Good morning Linda:

 

I do not come here to promote my brand on the World Wide Internet and the references given here to you are from other doctors and researchers. You can add to my experience besides my research activities that I am a Physician with extensive clinical experience as a diagnostician in general  medicine, and with a particular interest (yet not a specialty) in infectious diseases…..and that will have to do.

Although I did view some of the Mattman video I was unable to find and frankly did not have the time to view the Shapi video to this point.

I can understand your hesitation as per that review you cited regarding seeing Dr. Horowitz, and I also know that you would prefer to go to Johns Hopkins. However I have also read some reviews touting his Lyme treatment which again includes medicines commonly used to treat TB (rifampin, pyrazinamide, etc). If you can find somebody at Hopkins that is open to trying Horowitz’s methods then by all means go to him or her. Dr. Ying Zhang might know of who fits this description. Horowitz, as I mentioned, from time to time does use Dapsone (another anti-mycobacterial, but this time for Leprosy) and although I am sure it works, its potential side-effects are rather frightening. By the same token he states that Dapsone does not necessarily have to be used.

In the meantime, just as important is that you have your doctor refer you to an Infectious Disease specialist and that that specialist perform not only the latest serology for Lyme and Lyme related diseases but blood stains and cultures for a wide range of bacteria, including regular blood cultures, blood cultures for tubercular AFB (acid-fast bacilli) and blood cultures for anaerobes. This can be repeated in urine samples and if there is discolored phlegm, specimens of that as well. At the same time, cytology for the remote possibility of malignancy should be also done. An x-ray of the chest should be available and if it shows anything there should be an MRI with contrast follow-up. If there are any enlarged lymph nodes, either axillary (in the armpits) or on the neck these should be biopsied as should any mass that is found anywhere in the body. Again all of the diagnostic probes mentioned above should be used for any enlarged lymph node or mass as well as. And if the Infectious Disease specialist deems it advantageous than the more recent PCRs can be sought on all specimens sent in. A TB skin test should be performed and read in a timely manner. Depending on the severity of central nervous system symptoms and your general clinical situation (extreme lethargy, etc), a spinal tap might even be considered after doing an MRI with contrast of the brain. A tap, of course is a more invasive procedure and must be done in the hospital yet at times, providing all of the tests mentioned above are performed, it can yield invaluable information.

I think you will agree that it is time, if not past time, for you to find out why you are feeling the way you are feeling.

Dr. B.

 

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Dr. B, again I thank you so much for your time and for your recommendations, which I intend to follow up on with my internist.   And I will contact her and also Dr. Zhang for their recommendation on an infection specialist as well, which I hope I can get in to see soon.  I have my annual complete physical exam in early December with my internist.

I have really been having increasing problems with both fatigue and cognition and in general not being able to function very well.  I went to Hopkins earlier in the week for an appointment with my hematologist who oversees me for polycythemia, and I had so much trouble getting my thoughts out in the appointment and then so much of a problem with fatigue and cognition that I kept getting lost as I tried to get back to my car after the appointment.  Hopkins is like a small city--really so large and extremely complex--but I worked there for 20 years, yet still had trouble.  Maybe because it has grown so much \ some of the new buildings threw me off.  Someone kindly approached me to ask if I needed help, as they could see the trouble I was having.  I was so grateful.

I do hope you will get a chance to listen to Eva Shapi and to Dr. MacDonald, and I'm glad you had the opportunity to see Dr. Mattman's video since you think so highly of her work.

And I will definitely stress to whomever I see in consultation your concern as to the very possible TB connection in treating for Lyme and related conditions. I plan to print out each post you've provided and go through them during the consultations.

Please know how much I deeply, deeply appreciate your concern and for taking the time to provide all the information you have, Dr. Binder.

Linda

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Dr. B, I meant to let you know that I get a yearly MRI with and without contrast to follow a meningioma.  My neurologist (MDS) that I see for Parkinson is going to follow me for that issue as well since the specialist who had been doing it has gone back to Italy.  The last couple of years' MRI's have shown that there has been almost minimal growth of the meningioma, but when he pointed out to me the white areas in my brain (not related to the meningtioma) it was quite eye-opening to me. 

I need to set up this year's MRI soon, and I'm wondering if there is something specific for them to check for other than the meningioma, or whether anything else going on may be seen without it being requested? 

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Hi Linda:

 

 

I am sorry to hear that your symptoms of fatigue and cognition have not lessened.  You have also mentioned that you have a cerebral “meningioma”.

How much of your present symptoms can be attributed to the agents you are now taking I cannot ascertain and it would be very useful if you would now mention all prescription, herbal medicines and other over-the counter medications that you are taking to cope with your conditions.

Also, I have seen the presentations of MacDonald and Shapi. Very solid. I agree with much (but not all) in their respective talks. While on that subject, as previously mentioned please get not only the latest serology for Borrelia but also all other tick related disease. And yes, Shapi is suggesting the blood panel tested include mycoplasma, so include that as well.

I imagine that the MRI they are giving you is simply to detect change in interval growth of your brain meningioma. Of course the radiologist’s conclusion in the original MRI which showed the meningioma would be valuable to know in so far as I would like to know whether he even considered a granulomatous meningioma in his radiologic differential. Also the location of the meningioma is important as to various symptoms that could be attributed to that location, such as Parkinsonian symptoms. It is doubtful that Lyme caused this particular space occupying meningioma in the brain.

It might be good to ask the MRI techs and radiologist if they have considered a granulomatous meningioma in their differential such as from sarcoidosis or tuberculosis. MRI has limitations and will not get an actual organism identification as would a spinal tap or the even more invasive skinny needle biopsy (which I would not at this point suggest).

The differential diagnosis for a meningioma is just below:

  1. Other primary brain tumours.
  2. Metastases from lymphoma and adenocarcinoma.
  3. Inflammatory disorders - eg, sarcoidosis.
  4.  Infections - eg, tuberculosis. (tuberculoma)

The good news is that ninety percent of meningiomas are classified as benign meningiomas. However there is, as mentioned, a differential diagnosis which must always be considered. Essentially, meningiomas are space occupying lesions. Although claimed “uncommon” by some, intracranial tuberculomas present in a similar way to meningiomas and can account for 0.5-30.5% of all intracranial lesions (Tiwari et al., 1989). In the study linked to below they have been treated successfully with a floxacins such as Levofloxacin (where it showed up as active against the disease in a culture and sensitivity) in conjunction with the standard anti-TB medicines rifampicin, ethambutol and pyrazinamide. In that study tuberculoma of the brain and not meningioma was confirmed based on histology of the excision biopsy and cerebrospinal fluid (CSF) culture (from a spinal tap) results: Mycobacterium tuberculosis resistant to isoniazid (INH) with sensitivity to other standard drugs, including fluoroquinolones, was cultured from the CSF. (https://www.ncbi.nlm.nih.gov/pubmed/21659503)

There was a time (not long ago) when a “therapeutic trial” was suggested in major medical school textbooks such as Cecil and Loeb and Harrison’s for a variety of reasons and conditions. After all, it is less invasive then going after a lesion surgically. If a granulomatous lesion in the brain such as a tuberculoma of the brain or elsewhere was suspected, then such a therapeutic trial would be given and then checked radiologically, at intervals, for the recession of the lesion. Today, due to the malpractice atmosphere in the United States, that possibility is no longer feasible, and that is the reason why Dr. Horowitz must get a signed release from his patients before pursuing the use of anti-mycobacterial antibiotics for resistant Lyme and its related conditions. Probably any physician treating you, whether for Lyme-related disorders or other lesions will get an informed consent release from you as well. Dr. Horowitz, as mentioned, initially was drawn use of anti-mycobacterials original designed for TB because of Dr. Zhang’s study which showed Pyrazinamide to be effective against Lyme “persisters”.

As you had mentioned Bartonella, which you aptly described as the one that leaves straight red lines sometimes on the skin that look like scratches but that aren't........I notice that some favor Levoquin and Rifampicin in its treatment and some (such as Dr. Horowitz) favor Zithromax (Azithromycin) and rifampicin. I would go with the Azithromycin and rifampicin (in addition to the pyrazinamide and myambutol mentioned above). The idea of pulsed therapy, mentioned by both Mac Donald and Horowitz seems to be a good idea, as in  taking these antibiotics every other day. And as with all medicines, the higher the dose of the antibiotics used the greater the toxicity, so low doses should be maintained. Liver enzymes do have to be checked before starting drugs like rifampicin and pyrazinamide and then every few months (especially at the beginning of treatment) to make sure that they stay stable and do not increase. And from a gastrointestinal tract point of view, probably Nexium 20mg daily or ranitidine 150mg every 12 hours should be taken to calm the stomach and prevent gastric erosion.

If it works and you feel better (symptoms resolve) they might be able to slowly wean you off your other meds. That would be ideal. I know that it might sound strange to you at this point, but it is my firm belief that the less medicines the better......unless the organism/organisms behind the disease are so virulent or persistent as to call for more.

As always you must discuss things over with your doctor, who will make the final decision. Should that decision be affirmative I will come across with a proposed low dose schedule of treatment.

Be well

 

 

Edited by Dr. Joel Binder

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Dr. B, this is all such important information, and again I just can't thank you enough for taking the time to type it all out and send it to me.  And that you would also offer a proposed low-dose schedule of treatment is just so very kind and generous of you.

I've been keeping our conversation open for others to read if they want to here in the Forum in case anything may be of help to them in any way, as well as for any medical practitioners/ researchers that may find the information you've shared of interest to them.  At this point, however, I'd like to continue in e-mail with each other for the sake of privacy as I go more into my medical picture and records and also so as to not take up more room in the Parkinson's Forum area.   Would you be okay with that, and if so, may I send my e-mail address to you in a PM (Personal Message) through this site?

Thank you so very much.

Linda

 

Edited by Linda Garren

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