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» LymeNet Flash » Questions and Discussion » Medical Questions » LLMD/LymeMD blog--has anyone seen this?

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Author Topic: LLMD/LymeMD blog--has anyone seen this?
CD57
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http://lymemd.blogspot.com/

I don't know who this doc is but he is a treating LLMD. It's not the LLMD with the book out either, that's who I initially thought it was.

Here's a very interesting entry. Note near the bottom where he talks about bartonella and babesia "Bartonella and even Babesia do not always require therapy. They are opportunistic. Once Lyme has cleared the immune system may eliminate them." This supports what Dr B said at the latest ILADs conf in SF.....it's almost always about the LYME!

-----------------------------
It is becoming clear to me that most patients

have co-infections. The idea of combination

therapy is morphing into combination therapy which transitions into co-infection therapy. Trying to treat "everything" at one times is counterproductive. Patients Herx too much. Let's take a typical mild/moderate case. We can start with Amoxil/Biaxin/Plaquenil. We have a cell wall agent, a protein synthesis blocker and a drug which is synergistic with Biaxin-reduces inflammation and may have some anti-cyst properties. If symptoms quiet down after some period of time we can transition into anti-Babesia therapy. Mepron and Artemesin can be added. To minimize the number of drugs Amoxil can be withdrawn. If "Lyme" symptoms recur, Amoxil can be reintroduced. I like Amoxil because of it's flexibility. The dose can be increased and Benemid can be added to increase serum levels if desired. Also, one can ease into Babesia therapy by introducing Artemesin before Mepron-or Malarone, to control secondary Herx responses. After Babesia symptoms clear the Mepron and Art are stopped. Bacteria in blood can be addressed(Bartonella, Mycoplasma and possibly Ehrlichia). Rifampin can be introduced. Plaquenil can be stopped. If needed, Levaquin or Cipro can be started. Amoxil would be stopped. Biaxin can be changed to Doxycycline to cover Mycoplasma and Ehrlicia better. We still have to address Cystic Lyme forms. If the patient is generally better, Lyme treatment can be resumed with Flagyl, Amoxil and Biaxin or Doxy. This can be continued until the patient has been asymptomatic for about two months. At that point, may be in remission. This can only be determined if the patient remains symptom free off therapy. The order of treatment can be modified based on a clinical sense of what is causing the mosts symptoms. Flagyl can be added early on for more agressive Lyme therapy or Bartonela/Mycoplasma can be treated first instead of Babesiosis. Bartonella and even Babesia do not always require therapy. They are opportunistic. Once Lyme has cleared the immune system may eliminate them.

All of these concepts are in a state of flux. The main idea is to overlap therapies which make transistions easier. It also important to attempt to reduce the total number of anti-microbials taken at any one time to minimize drug to drug interactions. One more comment: I find Biaxin to be more effective than Zithromax, but Zithro has less drug to drug interactions. Biaxin and Diflucan can cause prolongation of QT intervals and increase the likelyhood of heart block and even fatal arrythmias. EKG monitoring is advisable with these drugs.

The paradigm is complex and evolving.

Additional information: Clongen WBs are good. Clongen finds bacteria in blood smears and performs a variety of strains. A Bartonella PCR test is available for all strains. A PCR test for 15 strains of Babesia is under develpment.

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skigal
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That blog has alot of great info. LLMD is reasonably priced & takes some insurance too.
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CD57
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Skigal, how did you find that out? Do you see this MD? If so, would you PM with his info?
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Marnie
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I took a lot of grief when I kept saying...gotta rid Bb FIRST.

It is a really bad guy.

Get the leader.

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feelfit
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excellent find Cd-57.

What a wealth of info! And a breath of fresh air to see these folks looking for answers.

Thank you,
Feelfit

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bettyg
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cd,

would you break up that 1 page solid block post paragraph into smaller ones please so we can comprehend and read what this llmd is saying?

thanks; just click on pencil, 3rd box to right of your name.


detailed medical stuff ... 1 sentence per paragraph so we can obsorb if possible please.

BIG THANKS! [group hug] [kiss]

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Angelica
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I never heard of this lab he mentions Clongen before. Has anyone ever used it?
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jkmom
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Dr. J ordered a test from Clongen for my daughter. He said they use a little different methodology than IGeneX. I didn't ask more than that.

I think he didn't consider my daughter's IGeneX test to be strongly positive of Lyme. It was positive by their standards but he didn't like some of the bands counted. Her Clongen test was CDC positive after 8 months of treating.

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CD57
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One of my LLMDs is a fan. Haven't asked the other.
Are they good for coinfections?

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SForsgren
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I don't recall Dr. B saying that these do not require treatment at the latest conference.

In fact, most of what I have heard of late is that Bartonella is probably more important to treat and more involved in many of the symptoms that we have.

--------------------
Be well,
Scott

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CD57
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He did not say that they don't require treatment. He said that most of the time, the problem is really the LYME.
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lpkayak
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ok-can you bring me up to date?

i know what dr B said in san fran and he has been my #1 resource thru this whole thing

shortly before he said that tho...i became aware of the dr S who wrote the text books on babs and bart and i'm pretty sure he is saying that bart is the big problem...get rid of bart and the Bb and everything else will be taken care of by the immune system

what are the biggies saying about this? is dr B contradicting dr S?

i don't know for sure if dr S treats patients-i think he might do consults. he sure has written a lot and creating a test etc...i guess that is how he makes $ if he doesnt treat. that makes me wonder about him...but he is working with dr J to write a book now...so that makes me think he is ok...

what do you guys think? bart or Bb is the big problem?

--------------------
Lyme? Its complicated. Educate yourself.

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Angelica
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Dr. S. does see patients.

I think if more research was done on the subject we would know more about what is the most important to treat first.

It gets confusing and even more confusing is that different LL people who are treating me think different coinfections cause different symptoms so now I have no clue which end is up or what symptoms are bart or babs even though I have read different symptoms lists.

Could it be coinfections with out borders or clear boundaries? Maybe cousin babs is having an incestuous relationship with cousin bart and they are mating in my spleen and no one is policing their activities?

I also think everyone of us is different and we are treating different strains and combos. Some have bad cases of bart some have not so bad cases of bart and some have yet to uncage bart and would throwing Cipro or Levaquin on the fire really help them out or not?

All questions that need answering but by who and when...

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klutzo
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Thank you so much for posting this. I read the first two entries in the blog.

In both entries, he mentions that people with TBI's usually have elevated lymphocytes and low neutrophils. I thought that meant viruses, and that bacterial infections were just the opposite.

I have always had just the opposite on my labs, so maybe I've got it backwards.

He mentions that positive ANA and RA titers are common. I've had several, all negative.

He mentions that low white counts, low B12 and low folic acid are common, along with abnormal 25OD to 1,25OD ratios. Mine are all normal, and my folic acid is actually above normal. Red cell Mg is normally low in Borrelia as well, and mine is above normal.

He mentions that TBI patients often have elevated ESRs and CRPs. My CRP is exellent and my ESR is too low, which is typical for fibromyalgia, which I have been assuming is the same as Lyme. Maybe I need to re-examine that belief.

Now I am wondering again if my two positive Bowen QRiBb tests for Lyme were valid.

I herxed like crazy on Samento, but it kills many other things besides Borrelia.

I've had cats all my life and been scratched to the point of drawing blood constantly, but I failed to herx at all on very high doses of Cipro.

This raises all sorts of questions, esp. the ratio of the lymphs and neuts.

klutzo

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Hoosiers51
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I had come across this blog awhile ago and found it interesting.

Are we sure this LLMD is male? (everyone is using "he")

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CD57
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yeah, someone here knows who he is and has an appt with him soon.

The blog is very interesting. He goes into a lot of debate with someone who follows it who is apparently a veterinarian (dogdoc). They talk about which vitamins and supplements for which there's "no evidence" that they help--ie; Vit C, and those that are imperative--magnesium, the B's. Dogdoc knows a TON about this illness and the blogging MD is very impressed.

At one point, I forget the topic, one of them says "the famous LLMDs know nothing about this".

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Hoosiers51
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Thanks.

CD57-- what is "this" that the famous LLMD's know nothing about? The blog in general, or something about Vit C...???

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CD57
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I forget.....it was in the later months of his blog where he and dogdoc are going back and forth. If you have some time, read all the entries. They are obviously enjoying themselves.

Something new I learned: there is a protocol called the "Stratton protocol" for CPN, which this doc appears a fan of.

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klutzo
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I came back to add to my previous post. I just did some research and I was correct afterall ...

Low lymphocytes with high neutrophils are indicative of bacterial infection, and the opposite is indicative of viruses, so he had it backwards on his blog.

For a minute there I was doubting both my memory, and whether or not I really have Lyme.

klutzo

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seibertneurolyme
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Sorry, but I have problems with the statement,

"Once Lyme has cleared the immune system may eliminate them (Babesia and Bartonella).

It would sure make life a lot easier if all you had to do was treat the Lyme, but I don't think that is reality.

If you look at studies that have been published on what organisms are found in ticks with the passing years the numbers of ticks infected with Babesia and Bartonella keep increasing -- in other words your odds of contracting these coinfections from a tickbite keep increasing.

Obviously if you are diagnosed and treated quickly then your immune system may have a fighting chance to eliminate the coinfections. But if you have been sick for years before being diagnosed then rebuilding the immune system will take years as well.

Based on hubby's experience, I think it works better if you treat both Bart and Babs at the same time since they are both red blood cell parasites.

Klutzo,

Not sure where you got all the blood stats, but most of those do not apply to hubby either. I think it is very hard to generalize these things because people of all ages and with differing lifestyles get sick with tickborne illnesses.

If Dr S is correct about Bart suppressing the immune system, then wouldn't that affect ESR and CRP numbers?

Also one doc told hubby that RBC magnesium can be falsely elevated if you have leaky cell membranes -- don't think there is any way to measure that though.

I have always wondered if patients with primarily arthritis symptoms might not have different blood markers than those with primarily neuro symptoms.

There is just so much research that has not been done.

I do agree that most people are too sick to treat everything at once. But as Angelica stated, the symptoms overlap so much it is very difficult to say which tickborne infection is the most active and which should take precedence.

Was glad to read that Clongen labs is working on new tests -- just hope they are reliable.

Bea Seibert

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gemofnj
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I read lymeblogspot all the time. It is wonderful and very informative.

I like the one entry that talks about people being overmedicated to quick or all at once and it causes people's treatment to fail.

Too bad he doesnt practice closer or I would love to see him.

And the comments he recieves are awesome too.

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lymecaregiverNY
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Would someone graciously PM me with the name and address of this LLMD in Germantown,MD?

We are unhappy with the service that we are receiving with our current LLMD in terms of bedside mannerisms as well as the doctor's reliance on homeopathic treatments that, in our front line experience, have proven to be too costly and of minimal efficacy.

Thank you.

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jenny317
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I too would like to receive information about this doctor. I am very impressed with the tone of his blog. He seems like he would direct treatment as the patients symptoms indicate and he seems to acknowledges that he doesn't know everything about this disease but is still learning and figuring it out.
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DaveNJ
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If anyone know this Doctor's name can you PM me? I have a frined with LYme who was told he now has reactive arthris. This friend is the one who saved my @ss and got me pointed in the right direction.

I would love to return the favor...he is getting no hlep with his reactive arthritis..unless you count pain numbing pills.

Dave

--------------------
On my journey to wellness - One day at a time.

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luvs2ride
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Is this entire blog written by just one doctor?

I read the Nov 10 entry. He lost my interest completely when he dissed the anti-inflammatory diet. I have R.A. and can personally attest to the absolute merit of an anti-inflammatory diet. It was the first thing I did, before beginning any meds and it reduced my pain and inflammation by 50%. So he lost points on that score.

Second, his statement of treating many lyme patients who previously tried treatment with CAM doctors and failed is very lopsided reasoning since obviously anyone who treated with a CAM doctor and succeeded would not be coming to this doctor or any other doctor for further, unnecessary treatment.

Aside from that, I respect his right to prefer allopathic medicine and appreciate his forthrightness about it.

I won't have any additional interest in reading the blog though unless it is actually a doctor chatline with various views and experiences from different doctors. That would be really cool.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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CD57
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Luvs, I had read an entry where he said that the diet worked, impressively in fact? Maybe he dissed it first and then realized that it worked later?
For the folks wanting his name, his identity can be discovered through ILADs according to his blog.

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Hoosiers51
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luvs, do you have lyme or R.A or both? Maybe the diet doesn't work as well for people who just have lyme but no joint issues and pain?
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sfcharm
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I was at the break out session when Dr. B said, "it almost always comes back to the lyme".

He was talking about treatment for the coinfections. He definitely said that they should be treated but if after treatment, the patient is still ill, it's almost always the lyme.

I posted what he said on www.canlyme.com the same day I heard Dr. B say this.

I highlighted some of the things I heard at the conference on Canlyme.

I took it that you need to treat the coinfections. He also said during this same session that if you find an antibiotic that is working, treat for a minimum of three months.

The breakout session that was done by DR. B and Dr. H, was fabulous.

Barb

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luvs2ride
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I have lyme induced RA. Inflammation by any source can be aggravated by some foods and helped by other foods. Almost all illness has some inflammation involved.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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seekhelp
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I'd take that LLMD in a heartbeat. He's actually logical, intelligent, and questions logic regardless of the source. In my eyes, those are the perfect attributes for a doctor. They are extremely rare.

At least he admits the treatment protocols for these TBDs are horribly inconsistent. it's ridiculous two doctors can't see things the same way.

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Dawnee
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Can someone PM me the name and address of this LLMD please?
Thanks
Dawnee

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Shosty
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I would like to know the name of this doctor, too, if someone would like to send me a message. Thanks!
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lymeladyinNY
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Please - the name, address, and phone number of this LLMD. I am making minimal progress and I'm becoming hopeless. I need a new LLMD.

PM me this information, please. Thanks.

Lymelady

--------------------
I want to be free

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FuzzySlippers
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pm's sent with info. If I overlooked anyone in this thread, please let me know.

Fuzzy

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