Do I have lyme? Could it be the cause for my MS? Tricky one...

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
zjac020
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Joined: Thu 11 Jun 2015 13:19

Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by zjac020 » Thu 11 Jun 2015 15:18

HI all,

As with most people here, my story can be long. Im 34 years old and live in Madrid. I was born and raised in London, and lived there till the age of 24. Have always holidays in norther Spain (very rural area). My parents were both born in that region and migrated to London when they were 18. I think at least my dad has spoken about being bitten by ticks when he was younger (common thing over there), don't think my mother ever did though. I have never been bitten by a tick (atleast not an obvious bit from a seeable tick) and have never had the typical bullseye rash.

Diagnosed with MS 2 years ago. First and only relapse was on the 19th May 2013. Postive lumbar puncture, MRIs found approx. 9 old lesions in brain and one active lesion on the spine. This active lesion explained the relapse (drop right foot, weak right side of body especially leg and arm, resolved within 10 days or so). The relapse ocurred just after I had done some heavy carrying - my wife was 8 months pregnant and I had to carry various heavy supermarket bags and a hydraulic car jack from the apartment complex underground parking to our apartment for only a short distance, but I felt a lot of pressure/tension on the neck and upper back area. We initially thought the dropped foot (which is the first thing that occurred and I noticed as soon as we got to the apartment and i put the bags down) was down to a pinched nerve, or something of the sort.

Since relapse I have noticed crepitus (collar bone often clicks as well as joints), slightly worse balance and exacerbation occurs with body temp rise (from strenuous exercise, hot sauna or very hot bath). Under normal everyday conditions however I am asymptomatic, generally speaking, with a normal gait (unless I walk for over 20 mins and then slowly weakness and drop foot start creeping in). What Ive noticed lately (last month or so) is that if my right leg is in the fully extended or fully bent position it stiffens up, causing slight pain when i take out of that position. Spasticity basically.

From a "structural" point of view, other than some jaw treatment (see below), i have also had atlas realignment. The relapse has caused the muscles on the right hand side to weaken somewhat (and you can see/feel slightly less muscle tone on the right hand side) as well as a "clicking" on the right hip (not painful), again supposedly due to the misalignemnt caused by the changed muscles. When sitting downa the laptop for a while the left shoulder will start to hurt slightly, feeling like it is positioned "too high" and thus causes pain (if i lower the arm under the table the pain is relieved). I have slight scoliosis (not since child, probably from sitting on the sofa leaning on one side towards the laptop for several years) and posture wise in the past tended to often have my head "leaning" too far forward.

Have invested a lot of time and money in other testing. Borderline positive for lyme (Borrelia burgdorferi) along with Coxsakie (IGg) and Rickettsia (IGg). Have had CCSVI procedure performed in Rome two months ago. Have had TMJ looked at here in Madrid and spent a month of treatment to relax the jaw, but nothing serious found with no TMJ issues confirmed as such.

Also tested heavy metals in hair with very high lead, high mercury and high aluminium.

After two years of intense and constant research I have seen people whose MS has been resolved by treating Candida (Ann Boroch protocol), by treating heavy metals (Chelation with Dr Andrew Cutlers protocol), those who has resolved their MS with CCSVI, those who have reversed lesions with high dose Vitamin D procotol (Dr Ciceros Coimbra protocol) and others who have found it be a TMJ and "structural" problem. And ofcourse, those whose MS was actually Lyme.

After so many alternate doctors all convinced they know the answer to my MS, ive mainly been discarding options through a process of elimination. Lyme has been something that some knowledgeable folk have said is not involved in my condition, other say that it is. Id now like the opinion of this group. Whats the easiest way for me to share my lab results?

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ChronicLyme19
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Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by ChronicLyme19 » Sat 13 Jun 2015 2:53

I will not be able to comment much as the testing options available in Europe seem to be different than the US. But one comment I will add is that there is also the possibility that you have Lyme AND MS, as well as one or the other, or something else.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

zjac020
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Joined: Thu 11 Jun 2015 13:19

Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by zjac020 » Sat 13 Jun 2015 16:59

Of course everything is a possibility. Its also perfectly possible that 40% of people in rural areas have Lyme, and are completely asymptomatic, but we'll never know this as they'll never be tested by proper laboratories and may never show any signs.

I have had a relaps and have demyelinating lesions, thats clear. I could have Lyme and MS, but if the relapse and the very few symptoms i have are down to the MS, then the Lyme is benign. That is why what I would benefit from is from a fresh opinions on my tests and maybe retesting those areas that were unclear last time. The only ILLADS approved LLMD here in Spain is, in my opinion, a rip off merchant.

And yes, I also had vein blockages (CCSVI), high load of heavy metals associated with MS (lead, mercury and aluminiumI), i think a bit of candida...hepatitis B vaccines 2 years before the relapse, two root canals, etc. Unfortuantely, I tick lots of boxes of possible causes of MS!!!

Thanks for the opinion anyway, its appreciated.
zjac

RitaA
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Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by RitaA » Sat 13 Jun 2015 19:18

Hi zjac020,

I was hoping that someone else would be able to answer your question about the best way to post your test results. That said, even positive (and especially borderline) test results may not always indicate an active Lyme disease infection. In addition, no one on this (or any other) forum is really able to provide you with a diagnosis even if you were able to post those test results in addition to your medical history.

A few of the neurological symptoms (including occasional foot drop and ataxia) that I experienced did make some doctors wonder if I might have MS, and there can indeed be quite an overlap between signs and symptoms of MS and some cases of neurological Lyme disease. Distinguishing between the two isn't quite as easy as some people might think, and especially given current testing methods.

I wish you all the best in finding out with certainty whether it is MS or Lyme disease or both that you are dealing so that you can receive appropriate treatment and be as well as possible.

Take care,

Rita

p.s. Given your extensive knowledge, you are probably already aware of the following, but I'm going to include these links anyway just in case you aren't:

http://www.nationalmssociety.org/Sympto ... me-Disease
Lyme Disease

Lyme disease is an illness caused by the organism Borrelia burgdorferi, a bacterium known as a spirochete that is carried by a deer tick. The spirochete can be transmitted to people or animals by the bite of a tick — with the first signs of Lyme disease developing within days or months. Sixty to eighty percent of those infected with Lyme disease get a large, reddish rash sometimes described as a bulls-eye. Other symptoms include a flu-like illness with fever, headache, stiff neck, and muscle and joint pains.

Lyme disease can cause delayed neurologic symptoms similar to those seen in multiple sclerosis (MS) such as weakness, blurred vision caused by optic neuritis, dysesthesias (sensations of itching, burning, stabbing pain, or “pins and needles”), confusion and cognitive dysfunction, and fatigue. Lyme disease symptoms may also have a relapsing-remitting course. In addition, Lyme disease occasionally produces other abnormalities that are similar to those seen in MS, including positive findings on magnetic resonance imaging (MRI) scans of the brain and analysis of cerebrospinal fluid(CSF).

These similarities in symptoms and test results have led some people with MS to seek testing for the presence of antibodies to Borrelia, to determine if their neurologic symptoms are the result of Lyme disease or truly MS. The distinction is important because Lyme disease, especially when treated early, often responds to antibiotic therapy, whereas MS does not.


For more information about Lyme disease, consult the Lyme Disease Association or the Centers for Disease Control and Prevention (CDC).

Studies examining Lyme disease & MS

Two studies have examined the overlap in diagnosis of MS and Lyme disease. The studies were conducted in parts of Long Island, New York, an area where Lyme disease is endemic, or regularly found.

In the first study, people who had Borrelia antibodies in their blood as well as a variety of neurologic symptoms considered to be “MS-like,” were evaluated with MRI, evoked potentials (EP) and CSF analysis, including a test for the presence of Borrelia antibodies in the spinal fluid.

While those with the MS-like illness had the highest incidence of abnormal MRIs and were the only ones among those studied to have abnormal EP and oligoclonal bands in their spinal fluid (indicating an abnormal immune response), they did not prove to have any Borrelia antibody in their spinal fluid.

The researchers concluded that the few patients with the MS-like symptoms probably had these symptoms due to MS and had also been exposed to the Borrelia bacterium.


A companion study looked for the presence of Borrelia antibodies in the blood of 100 people with the diagnosis of possible MS. Of 89 people who in fact turned out to have definite MS, only one had Borrelia antibodies. The researcher concluded that “…infection with Borrelia is infrequent in MS patients who live in an endemic area. Lyme disease is unlikely to be a significant factor in the differential diagnosis of MS.” Furthermore, the presence or antibodies to Borrelia does not prove that Borrelia is causing the neurological symptoms, only that there has been previous infection with the organism.
http://www.medhelp.org/posts/Multiple-S ... ow/1231440
Hey MSers/Limbolanders,

I never before realized that a positive Lyme test can point to MS until my wonderful new internal medicine MD ordered another Lyme test for me (because I had tested positive for Lyme in the past). This time my Lyme result again came back as "Positive for antibodies to B. burgdorferi" (i.e. positive for Lyme) so the lab then did B. burgdorferi IgG and IgM western blot tests which turned out to be negative. That meant my original positive test showing antibodies to B. burgdorferi (positive for Lyme) was a false positive. The explanation given by the lab, the words printed on the lab sheet, read as follows, "Patients with autoimmune disease, syphilis, and other spirochetal diseases may have antibodies that cross-react with B. burgdorferi." So there you have it. If you have an autoimmune disease (such as MS, lupus, or rheumatoid arthritis) that can cause your Lyme test to be a false positive. So a false-positive Lyme test can actually point to autoimmune disease - maybe MS. Of course, if you're really unfortunate, you could have both, Lyme and MS!!
Last edited by RitaA on Sat 13 Jun 2015 19:22, edited 2 times in total.


RitaA
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Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by RitaA » Sat 13 Jun 2015 19:28

I wish the author(s) of the article had included one or more specific references to back up this statement because I find it difficult to believe:
Several older but also recent autopsy findings linked to in this article found that all deceased MS patients’ brains harbored living Lyme spirochetes. Even when tests, notorious for their large percentage of false negatives were used on living MS patients, staggeringly many tested positive for active Lyme borreliosis.
Also, as far as I know, there is no reliable test (other than culture) that distinguishes between a past and an active case of Lyme disease in humans -- at least not yet.

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by RitaA » Sat 13 Jun 2015 20:08

RitaA wrote:http://www.nationalmssociety.org/Sympto ... me-Disease

These similarities in symptoms and test results have led some people with MS to seek testing for the presence of antibodies to Borrelia, to determine if their neurologic symptoms are the result of Lyme disease or truly MS. The distinction is important because Lyme disease, especially when treated early, often responds to antibiotic therapy, whereas MS does not.
One thing I forget to mention in my earlier post is that antibiotic treatment may (or may not) be beneficial in some cases of MS. The following research as described by the Multiple Sclerosis Association of America will hopefully shed some light on this:

http://www.mymsaa.org/publications/msre ... ntibiotics
Experimental Medications

Tetracycline Antibiotics

The tetracycline antibiotics, including minocycline and doxycycline, have immunomodulatory and neuroprotective activities. They appear to decrease the passage of lymphocytes across the blood-brain barrier. A small Phase II trial of Copaxone plus minocycline showed favorable MRI data, with minocycline decreasing gadolinium-enhancing activity by 50 percent over a period of six months. A subsequent 24-month trial showed a significant decrease in lesion activity and clinical status.

In a larger study of 305 patients called RECYCLINE, minocycline was used as an add-on to Rebif in patients with RRMS. Patients being treated with Rebif were randomized to oral placebo (n = 155) or minocycline 100 mg (n = 149) twice daily for 96 weeks. Data were presented at ECTRIMS in the fall of 2012,43 and disappointingly, minocycline did not provide significant improvement to either clinical or magnetic resonance imaging (MRI) outcomes. Further studies of minocycline are not thought to be warranted.

Another Phase III trial with 200 participants looking at minocycline is still ongoing. This trial will evaluate the effect of 100 mg of oral minocycline twice daily on the conversion of clinically isolated syndrome (CIS) to a diagnosis of MS at six and 24 months. It began in January 2009 and is scheduled for completion in December 2015. It will determine whether 100 mg of oral minocycline twice daily reduces the conversion of clinically isolated syndrome (CIS) to clinically active MS and if any treatment benefit seen after six months is maintained at two years.

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ChronicLyme19
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Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by ChronicLyme19 » Sat 13 Jun 2015 21:38

Just curious, is MS a clinical diagnosis as well, or is there a specific test for it?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by RitaA » Sat 13 Jun 2015 21:50

ChronicLyme19,

I was just looking at this, and therefore had it handy:

http://mssociety.ca/en/information/ms_d ... aQod1rkA2A
Diagnosing multiple sclerosis

Establishing a diagnosis and determining the type of MS doesn’t always happen right away. By definition, a diagnosis of MS must include evidence of disease activity separated in time and space. Sometimes this means that it can take a little while for a diagnosis to be confirmed. When diagnosing MS, doctors are looking for evidence of the lesions in the central nervous system caused by MS. Sometimes these lesions cause symptoms and the doctor can determine the location of the lesion by the symptoms it is presenting on physical examination. Sometimes lesions occur but don’t cause symptoms, and doctors use MRI and evoked potential testing to determine their location. MRI can also be helpful in showing lesions that have developed at different times.

The time leading to a diagnosis can be a difficult one. Uncertainty, worry for the future, symptoms that appear and disappear just before seeing the doctor, delays waiting for appointments and tests – all these things can cause upset and sleepless nights. For some, a diagnosis of MS comes as a relief from worries of something far worse imagined.

The history and neurological exam are the mainstay of diagnosis in MS. MRI, evoked potentials and very occasionally lumbar puncture, are tests that may be useful in confirmation when a diagnosis of MS is suspected.

» Magnetic Resonance Imaging

Magnetic Resonance Imaging (MRI) is a medical imaging technique commonly used in radiology to visualize the internal function and structure of the body. MRI does not use radiation. MRI uses powerful magnetic fields to align the hydrogen atoms found in the body’s water molecules. In MS, the MRI can provide pictures of the areas of damage (lesions) in the central nervous system(CNS), caused by MS, and can also reveal whether there a loss of brain volume. If the contrast agent gadolinium is used, the MRI can image active inflammation that may be going on in the CNS. In early MS, it is possible, though uncommon (about 5%) to have a normal appearing MRI picture. Over time, with repeat MRI, characteristic lesions do appear, and if not, the diagnosis of definite MS must be reconsidered. If a second MRI is needed to confirm the diagnosis, it is important that it is done after a sufficient period of time since the last one, usually at least 3 months.

» Evoked Potentials

Evoked Potentials (EP’s - visual, auditory and somatosensory) is a test that measures the speed of nerve impulse conduction in the pathways of the central nervous system(CNS). In MS, nerve impulse conduction is slowed related to the myelin damage, and EP’s can record this slowing. The test involves placing small electrodes at spots on the head and body. A series of stimuli such as flashing lights or patterns, clicking sounds or very small electric shocks are applied. The EP test records how fast these stimuli are registered in the appropriate part of the CNS. Most people find the test painless, although occasionally a few find the electric shock to be a little uncomfortable very briefly.

» Lumbar puncture

Lumbar puncture (LP), sometimes known as a spinal tap, is seldom done since the development of the less invasive technologies, namely MRI and evoked potential technology. LP can be helpful in certain cases however, especially when other investigations are negative. During an LP, a small needle is inserted at the base of the spine, to sit in the space between the lining of the CNS, and the spinal cord itself. A small amount of the cerebrospinal fluid (CSF) which bathes the CNS and circulates through this space is collected. This fluid is examined for the presence of proteins which are known to be present with inflammation in the CNS.


It is important to remember that there is no one test that can be used to diagnose MS. The diagnosis of MS is one made only once other potential causes for symptoms have been ruled out. In addition, there are clear diagnostic criteria which must be met for a diagnosis of definite MS to be made.

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ChronicLyme19
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Re: Do I have lyme? Could it be the cause for my MS? Tricky one...

Post by ChronicLyme19 » Sat 13 Jun 2015 22:04

LOL thanks! I figured you might, so I asked. So it sounds more like a GB type of clinical diagnosis.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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