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Dr. Steven Phillips- MS and Lyme?


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Old 06-03-2007, 04:25 AM   #1
zandvoort
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Red face Dr. Steven Phillips- MS and Lyme?

Hi- I usually post on the MS board because I have found my symptoms seem to align and it is very active. However, I have no dx and after seeing some info on Lyme, I thought I'd post a question here.

Has anyone ever heard of Dr. Steven Phillips' ideas on the link between MS and Lyme? He is a VERY prominant lyme specialist- president of international lyme association , etc. My firend is a patient of his (NY) and sent me a DVD of a talk he did on the subject at a conference. It was quite fascinating but I have no idea if it makes sense to people 'in the know'. He questions whether the same bacteria that causes Lyme could be a factor in MS and if some patients DX'd with MS may really have lyme. One of his points is that there is really no good test for either and the sx are so similar. (He has many other points too, like the hightened presence of the lyme bacteria in MS patients) I think he said that if a person has a MS dx you may want to try antibiotics first before going to the more serious CRABS.

I found it interesting because I started ny neuro symptoms last year about 1-2 months after going OFF an antibiotic I had been on for about 9 years for acne. I am starting a new neuro doc in Boston tomorrow and I will ask him if he has heard of this theory and what he thinks of it. What would scare me is that it seems as though the treatments are contradictory to each other. For MS, you wamt to suppress you immune system from working overtime and for Lyme you want to boost it. If it is not clear which you have, treating for the wrong thing could really hurt you, I think.

I hope others on this board have some knowledge of this debate because it has made me nervous.
Thanks!

 
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Old 06-03-2007, 05:04 AM   #2
Bill S
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Re: Dr. Steven Phillips- MS and Lyme?

I recollect that my LLMD, who is a Rheumatologist, said that approx 70% of his patients who first come in with a diagnosis of Lupus/MS, etc, end up being infected with Lymes.

It's a damn shame there isn't a really accurate test for Lymes, and that there's so much mis-information out there amongs the labs and docs as to what consititutes a "positive results". The CDC didn't help the matter with their tracking criteria being adopted by everyone and their brother even though their criteria are way too restrictive.

 
Old 06-03-2007, 06:29 AM   #3
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Re: Dr. Steven Phillips- MS and Lyme?

Hi zandvoort, welcome to the board!

Some people who have Lyme disease were first diagnosed with other diseases including Fibromyalgia, MS, ALS, and CFS.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Lyme needs continuous, aggressive treatment.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

Dr. Phillips comes very highly recommended. From what I understand, he has done a lot of research on Lyme and MS. You may want to consider seeing him for an evaluation.

You are right that people who have Lyme should not take steroids because they can make symptoms much worse. Since steroids are often prescribed for MS, I would advise anyone diagnosed with MS to rule out Lyme before starting treatment. I have a friend going through this right now.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I hope you can get some answers soon.

Last edited by ticker; 06-03-2007 at 06:30 AM.

 
Old 06-03-2007, 09:27 AM   #4
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Re: Dr. Steven Phillips- MS and Lyme?

Zandvoort. Welcome to the Lyme board! I see Dr. Phillips and he is a very knowledgable Lyme doc. he has done years of research on Lyme disease and speaks at many seminars. I would recommend that you go see him also, I have read about the misdiagnoses of Lyme and MS. And I would definately get the Lyme ruled out before continuing on an MS regimen especially since you live in MA. which is an endemic state for Lyme. Dr. Phillips uses Igenex labs in Palo Alto to test for Lyme, it is a Lyme specific lab that reports all bands, not just a pos/neg result. Dr Phillips diag. by your symptom history and the pos. bands on your Igenex report, he also tests for autoimmune diseases to rule them out. He is very aggressive and passionate about his treatments, and you can completely trust his knowledge of the disease. Not only that but he is very personable and explains everything to you thoroughly. I highly recommend seeing him. I fly all the way from Texas to CT to see him. Good Luck and let us know what you decide. Sarah

 
Old 06-03-2007, 02:15 PM   #5
zandvoort
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Re: Dr. Steven Phillips- MS and Lyme?

Thanks for the info everyone- Ticker, I have 17 of the list you stated. I've been feeling like a hypochondriac for having so many things hapening! LOL You almost do not want to tell the docs everything. Sarah- I will definitely consider seeing Dr. Phillips depending on how I feel about my appt at Mass General (Harvard U) tomorrow. I will specifically ask how they feel about Dr. Phillip's theories. I have already been to 2 neuros and a rheumatologist. Not happy about bopping around to so many docs.

Question on the Igenex lab- when you said check for bands, is that in blood of CSF?

Thanks!

 
Old 06-03-2007, 02:32 PM   #6
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Re: Dr. Steven Phillips- MS and Lyme?

Hi zandvoort. The Western Blot is a blood test.

From what I understand, spinal taps show Lyme in less than 5% of cases. I do not think a Lyme doctor would order this test to test for Lyme.

I know what you mean about not telling all your symptoms. It sounds crazy to have so many, but Lyme can cause them. I hope you can see Dr. Phillips.

Good luck tomorrow. Let us know how your appointment goes okay?

 
Old 06-03-2007, 09:15 PM   #7
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Re: Dr. Steven Phillips- MS and Lyme?

I saw Dr. Phillips ten years ago. He was the only one around at the time who really seemed to grasp the reality of the disease.
I'd love to sit and chat with him about what he has learned since then.

In my opinion, one of the major hurdles of this disease lies in it's name. "Lyme disease." It sounds goofy to be completely honest. You can't name a disease after a town in CT and have people take it seriously. The true name of the disease is "Borrelia burgdorferi" and that is what it should be called.

Borrelia bacteria in ticks were found in Europe centuries before "Lyme Disease" was "discovered" in CT.

In the book "Healing Lyme" Dr. Jernigan also points out there is strong possibility that Lyme and MS are related. I have no doubt.

I sent a letter to Montel Williams expressing this and my own theories on both diseases but of course, never heard from Mr. Williams or his staff.

Borrelia and the handful of other tick borne illnesses are just some of the ones we know about. I'm sure there are thousands of others out there causing all types of neurological and physical symptoms that we have no idea exist.

I'd definitely see Dr. Phillips!

 
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