lyme disease or MS

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lyme disease or MS

Postby pinda15 » Sun Mar 13, 2011 11:20 pm

Have been dealing with MS like symptoms for over 9 years with possible MS and Centreal Nervous System Disorder dx. Saw a new Neurologist last Dec. who ordered all kinds of blood work and tests which I finished end of Feb. RBC flagged, B12 deficient so taking pill for, sugar and lipids up and need to watch, healthy heart, bone scan good, eeg's normal, evoke potentials normal, MRI shows changes and pineal gland cyst larger ?, positive lyme test and second positive with third to be done with appointment to Infectious Disease Specialist. Could this be lyme disease all this time. Been reading about and could be but ............................... just like MS dx. Neurologist only saw me first visit, ordered tests and sent info to my family Dr. suggesting I should see a rhumatologist, which I saw 2 years ago, or Infectious Disease Specialist. No reasons for and no info re MRI changes or lyme test. My family Dr. sent me for the second test for lyme and she is looking up info on lyme disease and booking Infectious Disease Specialist. Who knows when I will get that. Any one else go through this? Any thoughts of where I should go? Linda
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Postby jenf » Tue Mar 15, 2011 7:39 am

Hi Linda,
I too was diagnosed with MS in 2009. Was treated with IV Solu-medrol in the hospital and got SIGNIFICANTLY worse afterward. Neurologist after Neurologist diagnosed me with MS. I had this nagging suspicion they were missing something. I could "feel" something in my body... hard to describe, but it was a nagging suspicion I couldn't shake. After a failed attempt down the CCSVI road, I decided to reexamine my "diagnosis". I went to the National Institutes of Health, who also confirmed the MS diagnosis. I started the CRAB's, even though I still wasn't convinced. The MS diagnosis had too many holes in it.

Last year, my older sister started having neurological problems and found out she had Lyme disease. I went to an Infectious Disease doc who advised me that Lyme and MS are almost indistinguishable. She started me on a course of Doxycycline, and I had the typical reaction for someone with Lyme disease (an increase in symptoms). This only lasted for a few weeks, and I've been getting better ever since. I got a second opinion from an Integrative doc who also confirmed the Lyme diagnosis. So even though I fit the criteria for MS by the accepted medical standards, I in fact, had an untreated case of Lyme. Keep in mind I had tested negative for Lyme 7 times before I began treatment. An educated Infectious disease doc will treat based on clinical symptoms, not just the lab tests (which aren't worth even the copay people spend on them).

There's a huge debate among many as the validity of the current tests and their accuracy. A great article on MSNBC came out the other day on this epidemic. you can access it here: http://www.msnbc.msn.com/id/41973641/ns ... _diseases/ . I guess everyone has to make their own decision with regard to treatment. there's also a group of MS'ers on here that treat successfully with an antibiotic protocol. You can find it under the "Antibiotics" forum. If you need any other info, feel free to PM me.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby pinda15 » Tue Mar 15, 2011 4:17 pm

thank you for your reply Jen. I'm waiting to hear when my apt. with the Infectious Disease Specialist will be and looking for any information about lyme disease and what tests are used here in B.C. Canada. Two tests show positive and the lab wants another in four weeks. Thanks for the web page info. I do not remember being bitten, could have been in Australia, New Zealand or B.C. Was very ill in Aus. so maybe that was the start. Hope to find a Dr. who will investigate everything and I can find out what this is. Do have many white matter lesions on MRI and if the last one done in Feb. is correct the cyst or whatever showing on or by my pineal gland, has grown from 1cm on MRI 2004 - 2009 and now showing as 5cm. My family Dr. is talking to the specialist who read the last MRI and asking him to check past MRI's for this and other changes. Hope to hear soon about this and next apt. Neurologist who did the last MRI and lots of other tests, suggested Infectious Disease, Rheumatologist, and General Internist Specialist's. Looks like my family Dr. is starting with Infectious Disease because of second positive test for Lyme and lab request for another test. Thanks again, Linda
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Postby jenf » Tue Mar 15, 2011 4:40 pm

Hi Linda,
Here's some other resources for you to look at with regard to the Lyme/MS connection: http://www.owndoc.com/pdf/tom-grier-ms-and-lyme.pdf
http://www.canlyme.com/lymemultiplesclerosis.html
http://www.owndoc.com/lyme/multiple-scl ... -cover-up/
And some info for referrals:
http://www.chroniclymedisease.com/llmd-referrals
http://www.lymediseaseassociation.org/i ... Itemid=368
Navigating through the Lyme/MS maze can be confusing. If there's anything else you need let me know and I'll try and assist. Hope these sites help!
Jen
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Location: Albany, NY

Postby Taurus » Tue Mar 15, 2011 9:47 pm

Any difference between MRI lesions from Lyme or MS. I got tested once for lyme due to a rash and severe itching in right arm. It came out to be negative. I have heard that brain lesions in Lyme and MS do have some differences . Any comments please.
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Postby jenf » Wed Mar 16, 2011 8:55 am

Hi Taurus,
I found some info on the web about the lesions. It appears as though they are almost identical:

http://lookingatlyme.blogspot.com/2010/ ... atter.html

http://www.naturalchoice.net/articles/c ... nosis.html
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
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Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Postby pinda15 » Wed Mar 16, 2011 5:42 pm

Thanks for the info but after reading some I'm blown away :( I live in B.C. Canada so the Dr list would not work for me. Will look for a list here. Think my family Dr. is booking an apt. with Infectious Disease Specialist. Suppose to have another lyme test in a week but not sure if Dr. is waiting until I see the Specialist. Do not have the paper work to do. From the reading it looks like the test needs to be the right one and do I need? My Dr. did not think lyme was the problem but does not know much about it. She is reading up on so hope that helps her to help me. Will have to read somemore when I'm able to absorb and make some decisions on how to proceed. Thanks again, even though it has muddied the water more, Linda
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Re: lyme disease or MS

Postby TeresaL » Wed Aug 19, 2015 6:05 pm

Igenex.com is the best for Lyme testing. Quest and lab corp aren't as accurate and can give you a false negative. I got lyme when I was 10.it triggered MS when I was 30. W Lyme you can't take meds that suppress the immune system.
A ID doc may not be the most open minded w this they are stuck in their doc boxs. Contact a lyme support near you and find a supportive doc in your area who is open to lyme triggering MS problems. Good luck
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Re: lyme disease or MS

Postby dlb » Sun Aug 23, 2015 8:01 pm

hi Linda,
I sent you a PM, but I have sine looked at the date of your post.... I am sure my reply is way past you finding help!!
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Re: lyme disease or MS

Postby Scott1 » Mon Aug 24, 2015 1:46 am

Have a very good look at the actual report. If Lyme is known in your area then fair enough. I have a doctor who has sent me for a number of Lyme tests and tries to argue that I have it even though the tests are all negative and I do not, nor have ever, lived in a known lyme area. I do have definitive EBV tests and have had Chlamydia Pn in the past, again proved by tests. He insists I have Lyme but has no basis for his claim which is all aggravating for me as I like to be evidence based.
Regards
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Re: lyme disease or MS

Postby Merlyn » Tue Apr 12, 2016 1:15 pm

PLEASE CONSIDER LESSONS LEARNED LISTED AT BOTTOM OF TESTIMONIAL


My name is Marilyn, I am now 60 years old, and I was diagnosed with Primary Progressive Multiple Sclerosis in 1992. My MRI showed hundreds of pinpoint lesions. By 2004, I could not walk at all. I do not have remissions and I have continuously progressed. I have never taken the standard MS medications because I did not see much evidence that they were worth the side effects or the cost. After seeing dozens of doctors of all sorts, the only laboratory tests that showed any obvious problems were those involving mercury toxicity and the metabolic functions that the toxin disrupted.

My journey has been lengthy. I have done every conceivable naturopathic therapy I could find that I thought might improve my situation, including intravenous chelation agents. I am almost embarrassed to list how many different protocols I followed without result. While some things were beneficial, indeed critical, like liothyronine (thyroid medication), I was not successful at reversing any of the creeping paralysis that was slowly removing any ability to move any limb. I found some pain relief using cannabis oil (doctor prescribed), and it also helped sleep, but I did not see any improvement in mobility, in fact, within one year I lost all hand function in both hands. I seemed to be in an accelerated decline.

Fortunately, in Seattle I met a physician whose brilliance was immediately apparent and I began to work with her. Employing her years of knowledge treating environmental illness/toxicity, she recommend a 3 component cocktail that would be best nebulized. As I have some nutritional background, and some knowledge of alternative therapies, I recognized what this original cocktail of synergistic ingredients should be capable of. Also, and I truly believe this due to my experience that I will delineate shortly, I believe that this cocktail could very well be beneficial in treating any of the neurological conditions that have exploded in the last few years. I am talking Alzheimer's, Parkinson's, TIA damage… This therapy can be done at home at your convenience, painlessly without side effects and affordably, and in my personal case, it is only made me feel better. My paralyzed hands are responding to this treatment, they are no longer frozen into claws, but are able to stay extended and I can now move my fingers to some degree. This is to me miraculous is remember I am considered incurable, hopeless Primary Progressive. All my joints are looser.

So what is this cocktail that I am talking about?

It is a mixture of liquid zeolite ACZ (resultsRNA.com), ACS liquid silver (resultsRNA.com) and Theranaturals buffered glutathione. I am going to record my method of administration. Understand, I am not giving medical advice, I am simply relating what my experience has been. Your mileage may vary.

First, I had to obtain a nebulizer that would handle a mask. Then I had to acquire the proper glutathione that I could nebulize:

https://www.theranaturals.com/natural-s ... grade.html

The next step was to acquire the products from resultsRNA, I would not even consider any other brand because my doctor knows how trustworthy the manufacturer is. So, in a small dose cup, I measure out 1/4 teaspoon of the liquid silver, add 1/2 teaspoon of the liquid zeolite. (See lessons learned below). Into this combination, I break open 3 capsules of glutathione and tap out the contents. It fizzles as it dissolves. I take this bubbling liquid and pour it into the nebulizer cup. Then I place the mask over my face and turn on the machine. It takes about 15-20 min. for the liquid to disappear.

I love how simple it is to get the same accurate dose each time. I love that it is easy to adjust dosage according to reaction. I love the fact that nebulizing gets this cocktail into my brain through the sinus/nasal passages when I breathe through my nose. I love that when I breathe this cocktail into my lungs, I know it is getting into my bloodstream. I love bypassing the digestive tract because I tend to overreact to any changes of intake and with this therapy, when done correctly, there should be absolutely no Herxheimer meltdowns. In fact, there should only be positives. Like increased energy, lessened joint pain, increased mental clarity. Decreased inflammation. Better sleep. In my personal case, all the above has occurred. But in addition, I am regaining movement in my fingers. I can lift my left hand, which has been made of concrete for the last three years. My limbs are no longer so spastic and stiff. My caregivers have noticed the amazing alleviation of tension in my muscles. I have only been nebulizing this cocktail for about 5 weeks. I feel like a living miracle. I promise I will write a follow-up in another 5-6 weeks.

I do want to mention a couple of LESSONS LEARNED:

I have found that it is important to start slow, especially with the silver. I have found that the ratio of silver to zeolite is important, that in the beginning I could only tolerate less than 1/8 teaspoon of silver, to 1/2 teaspoon of zeolite. If I tried to take a higher amount of silver, I felt nauseous, shaky, typical die off flulike symptoms. So I had to stay with this combination silver/zeolite, plus the 3 capsules of buffered glutathione for 3 weeks. I am now able to tolerate 1/4 teaspoon silver to 1/2 teaspoon zeolite. I have learned from my doctor that there is absolutely no need to feel anything but better when doing this therapy!
If you have any feelings of being ill, adjust amounts. I was told that sometimes it is wise to nebulize just zeolite for 2-3 days. Drink water.


I have found zeolite to be a diuretic. If I do not stay well hydrated, I experience constipation, headaches, fatigue, heat intolerance.

I have found it beneficial to to take powdered micronized zeolite as well, somewhere between 1/4 teaspoon-1 teaspoon everyday. However, even this I find to be a diuretic and once again I have to stay on top of the water intake.

I have found it useful to take magnesium. Without some extra magnesium, I get extreme muscle/joint pain. I believe this is actually a positive, because as I am removing mercury, lead, cadmium, arsenic, I need to replace these bad guys with nutrient metals like magnesium.

resultsRNA.com
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