[janieg]

With all the recent discussion on Lyme Disease, I thought I'd share this.

I had the chance to take a long car ride with a co-worker, and we started talking about health issues since her husband is really sick at the moment. She related two stories regarding people she personally knows regarding Lyme Disease, and then forwarded me emails they recent sent her. I

*****

A close friend of hers in Arizona sent out this email blast to everyone she knows....

Lyme Disease is now in all states and localities and worldwide. The UK, Australia, China...you name it. 100 species...potentially 300 including foreign states. Please listen to any of the info given.

I don’t know where I contracted it. It could be anywhere I’ve gone since the clean up of Katrina 10 yrs ago. Since my DX was fibromyalgia, I did everything I could (including narcotics) to help my pain packed body and cognitive decline. Every symptom in the book. A sweet friend in PA encouraged me to get the Western Blot test from Igenex Lab in CA and it was suspicious. I went to a Lyme Literate Dr. (Regular docs don’t acknowledge it) in PA and confirmed Lyme Disease with co-infection of Babesia. The Lyme Literate Dr. in Scottsdale, AZ found something called Proomyxzoz Rheumatica...a malaria lik parasite in my body...newest info shows it carries at least 5 more malaria forms that hide from the immune system. One year of antibiotics and antimalaria meds has helped minimally. I have the pain rotating from joint to join, cognitive changes like dementia + too many other symptoms to mention, fatigue like chronic fatigue syndrome, can’t exercise or after I am in bed for awhile or pain escalates. No one in my family or friends can depend on my to meet or go out as I can be sick at any time...it has a mind of its own.

I beg you to take precautions in walking/hiking in the wooded areas/cutting grass/watching kits/grandchildren in in playgrounds or outside sporting events, taking dogs for walks, gardening, traveling in wooded areas where there are mosquitos, birds spiders. You just have to look this up on these sites and see what to do immediately. If let go it will develop into many painful chronic diseases or some that cause death. It is the great imposter of all diseases-including psychiatric & MS. The organism(s) have already hit my kidneys and my brain. The rash suggested is not always “bullseye”.. just a rash (which I had).Please be on the alert…it will be in epidemic form this year in all states and abroad. Find what is called a “lyme literate physician” immediately.

Please listen to Dr. Horowitz 9 min. video. My state (AZ) has at lest 200 infected children and adults...some too ill to make the meetings.

(I think this is it: https://www.youtube.com/watch?v=xYMezkigMWk)

******

The daughter of a friend of hers...


Many parents have told the story that they listened to the doctors and denied their children’s illness and pain because the doctor told them their child was “stressed”, “faking”, “attention seeking” etc. only to discover, sometimes years later, that their children were/are dealing with chronic infection. The longer you wait to treat, the harder it is to kill the pathogens. It isn’t clear if you can clear the infection if the pathogens become established in tissues.

Sarah got sick Sept 2009. She had been an honors student in middle and high school, excelled in mathematics and instrumental music (all state band tuba, bass in rock/roll band), read a couple of books for enjoyment a week, she and I had started fencing together in the spring/summer 2009, she got her permit, car and was planning parties with her friends. By December, she could not read her favorite fiction novel, needed help walking from bedroom to bathroom, she was in constant unrelenting and debilitating pain from headache, hyperacusis, tinnitus, abdominal pain and abnormal bowel movements. Sarah had/has Borrelia, Babesia, Bartonella.

There was no known EM rash or tick bite. No joint pain or swollen joints. She had 4 ELISA tests, all were negative, including tests on the same blood that had Western Blot bands.

The first symptoms were strange. Her neck was visibly swollen…a lot...the only thing I could think of was “mumps”, but she had been vaccinated. Her throat was so sore she had difficulty swallowing and she had ear pain. But when the doctor checked her ears, they were clear. She felt and looked sick, but she did not have a fever. Her temperature was 97degF oral.

As time went on, more symptoms appeared that did not make sense. I think that is a hallmark of these infections, weird symptoms that don’t make sense and don’t respond as expected and instead of getting better, the child gets more sick. Another hallmark is when even though the child is still sick, the doctor will start saying they are “faking it” or “stressed” or “need attention”.

There was a series of diagnoses: cold -> flu -> mono -> mono w/ secondary bacterial infection -> pressure point headache -> allergies -> stress -> faking -> NDPH (new daily persistent headache). The problems never responded like expected and rather than getting better, Sarah continued to go downhill. She tried doing what the doctors told her to, she felt terrible, but tried to return to school. It only made her more sick.

What worked for her was when we found Dr. Jaller, he did the work-up and started antibiotic treatment. Improvement was seen at the end of the first week of treatment.

Improvement is much slower than other infections we’re used to seeing and can be seen over weeks/months rather than hours/days.

Please ask her and her parents to read “Cure Unknown” by Pamela Weintraub, There was a copy in the public library when I first read it. It was very good and I purchased a copy for home and for other friends who got also got sick. http://www.cureunknown.com/

View the movie “Under Our Skin”.
http://www.underourskin.com/
http://www.underourskin.com/videos/theatrical-trailer

The attached files are also helpful. Burrascano’s monograph is an excellent quick summary of Borrelia and possible co-infections. We did not do a lot of supplements as he suggested, but we did follow his instructions regarding rest, diet, exercise.

It is critical to find a recommended LLMD (Lyme Literate Medical Doctor) who other patients can tell you they have had success with. Ask as many experienced Lyme patients as possible to see who helped and who didn’t.

We take Sarah to Dr. Daniel Jaller in Germantown. He has seen her to 2 good pain free periods. We are currently trying to reach a 3rd.

They can request a list of LLMD from user support groups:
1) MD Junction Lyme Disease Support Group (Ask Group Leader BettyG)
http://www.mdjunction.com/forums/lym...rums/llmd-info
2) Lymenet http://www.lymenet.org/
3) ILADS http://www.ilads.org/ (ask Babara)

I would ask all 3 groups for their recommended LLMD list. I would talk to as many experienced Lyme patients as I could in deciding which doctor to go to. Ask specifically which doctors got their patients well and which did not.

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Scary stuff

[madisongrrl]

Originally Posted by janieg

By December, she could not read her favorite fiction novel, needed help walking from bedroom to bathroom, she was in constant unrelenting and debilitating pain from headache, hyperacusis, tinnitus, abdominal pain and abnormal bowel movements. Sarah had/has Borrelia, Babesia, Bartonella.


We take Sarah to Dr. Daniel Jaller in Germantown. He has seen her to 2 good pain free periods. We are currently trying to reach a 3rd.

Thanks for sharing this. I had tinnitus, hyperacusis and disequilibrium all from my left ear. It is awful. My Ehrlichia and Mycoplasma were negative. My Lyme was positive. And they think Babesia and Bartonella based on my medical symptoms; I don't think the testing is quite there for these 2.

Dr. Jaller has a pretty fantastic blog; He definitely reads a lot of scientific literature.

I have relatives and close family friends that have been dealing with tick borne illnesses. It hasn't been a straight forward road for most. My cousin has been dealing with this over over a decade and is still not entirely well.

[DavidHC]

Just a side note, I noticed that on his site there's the statement:

"We do not participate with any insurance companies including Medicare"

That's a shame. I suppose one has to be especially wealthy to see him?

Originally Posted by madisongrrl

Thanks for sharing this. I had tinnitus, hyperacusis and disequilibrium all from my left ear. It is awful. My Ehrlichia and Mycoplasma were negative. My Lyme was positive. And they think Babesia and Bartonella based on my medical symptoms; I don't think the testing is quite there for these 2.

Dr. Jaller has a pretty fantastic blog; He definitely reads a lot of scientific literature.

I have relatives and close family friends that have been dealing with tick borne illnesses. It hasn't been a straight forward road for most. My cousin has been dealing with this over over a decade and is still not entirely well.

[madisongrrl]

Originally Posted by DavidHC

Just a side note, I noticed that on his site there's the statement:

"We do not participate with any insurance companies including Medicare"

That's a shame. I suppose one has to be especially wealthy to see him?

Many Lyme docs don't take insurance because state licensing boards go after them because they treat outside of the CDC clinical standard.

They went after Dr. Jaller this year. He posted all about it on his blog. Luckily he won, but I'm sure after this he probably won't be dealing with insurance. I can't say that I blame him.

[madisongrrl]

Here is what happened:

http://lymemd.blogspot.com/2015/05/p...V7NHrDqW58MVK6

Here was the outcome:

http://lymemd.blogspot.com/2015/07/m...V7NHrDqW58MVK6

[DavidHC]

Thank you. So the problem is the system, not the physician. What a shame. In Canada, we can't get the extensive antibiotic treatment, and physicians have lost their license. I'm not sure what to think, but if physicians are restricted in methods that work, I think that's moronic. Unfortunately, if it turns out to be Lyme in my case, which I don't suspect now (though as mentioned I do suspect some infection or infestation), I'll have to figure out a way to get the money. Quite sad that money enters the equation when health is what's at stake.

I'm enjoying reading his blog.

Originally Posted by madisongrrl

Here is what happened:

http://lymemd.blogspot.com/2015/05/p...V7NHrDqW58MVK6

Here was the outcome:

http://lymemd.blogspot.com/2015/07/m...V7NHrDqW58MVK6

[janieg]

Love what Dr. Horowitz has to say starting at about the 16:00 minute mark when he starts talking about various causes of neurological problems, and how doctors react to them.

https://www.youtube.com/watch?v=6OdP8Jndnyk

[madisongrrl]

Originally Posted by DavidHC

I'm not sure what to think, but if physicians are restricted in methods that work, I think that's moronic.

I think this is happening more and more. It's not just for Lyme disease. The art of the clinical diagnosis is slowly falling by the wayside.

[madisongrrl]

Originally Posted by janieg

Love what Dr. Horowitz has to say starting at about the 16:00 minute mark when he starts talking about various causes of neurological problems, and how doctors react to them.

https://www.youtube.com/watch?v=6OdP8Jndnyk

Dr. Horowitz is such a bright doctor. I'm worked my way though his book and it is excellent. He will be one of the main drivers that brings together the IDSA and ILADS groups, which vehemently disagree with each other.

[DavidHC]

Yes, indeed. You're quite right. It is an art, and like all great arts it requires the capacity to think in the full sense of the word. Medical school doesn't train students to think, and I've met many, friends, family, etc. Thinking is also something that more often than not can't be taught. Anyway, I have much more to say on this point, but let's just say I couldn't agree more.

BTW Just past the 44 minute mark he begins speaking about LDN:
https://www.youtube.com/watch?v=6OdP8Jndnyk

Originally Posted by madisongrrl

I think this is happening more and more. It's not just for Lyme disease. The art of the clinical diagnosis is slowly falling by the wayside.