Ms vs Lyme Differential Diagnosis

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
17slae
Posts: 3
Joined: Sat 19 Dec 2015 0:34

Ms vs Lyme Differential Diagnosis

Post by 17slae » Sun 20 Dec 2015 1:21

Hi, I am new to this forum. I have a diagnosis of Multiple Sclerosis. There are a few oddities in my case that make me want to accurately test and rule out Lyme so I can be comfortable in the differential diagnosis before moving on. I had a couple questions and I’m hoping you all would be kind enough to consider. A bit of case history, or, the questions are below in case it is too detailed.

I am 31 years old. At 11 years old I had a quickly resolving erythema and swollen knee treated with Cefazolin and it was ruled sepsis from mosquito bites at the time. I had a Multiple Sclerosis relapse at 25 years which presented as numbness across the right side of my body, Steroids seemed to resolve relapse. MRI’s have been stable with six small lesions, and one in the thoracic spine, and appears like Multiple Sclerosis in terms of presentation: ovoid lesions clustering around ventricles/corpus callosum. Spinal tap three years ago was negative for elevated white blood cells (pleocytosis), elevated IGG, and oligoclonal bands (3 of 4 minimum for MS). I may have had minor sensory relapses starting at the age of 19, but insignificant and undocumented. At 26, 10 months after stopping steroids, symptoms began to accumulate steadily without remittance, more right sided, but still bilaterally, including: some motor deficits, trigeminal neuralgia, decreased dexterity in limbs, weakness, parasthesia/vascular issues to touch, neuropathic pain, disequilibrium, dereleazation, anxiety, severe fatigue, concentration issues, temperature deregulation, balance issues, and muscle fatigability. 3 years ago I undertook the recommended protocol for chronic CPN infection for a 10 month period. That 10 months consisted of daily (200mg doxycycline, 250mg azithromycin M/W/F) , 1-1.5 grams metronidazole taken for 50 non consecutive days, 1-4 grams amoxicillin for approximately two weeks. During and after the antibiotics neurological issues declined more rapidly, especially in the areas of exhaustion and brain fog. During this period I tested for Lyme (antibiotic provoked) and coinfections through Igenex, a reference lab, and ‘advanced laboratory services’:

Igenex IGM IFA: equivocal
Igenex IGM (CDC-/Igenex+): 18++,23-25IND, 31+, 34IND, 39IND, 41++, 83-93IND, 31 epitope test positive
Igenex IGG (CDC-/Igenex+):31++, 39+, 41+++, 58+
Igenex Babesia fish (RNA) positive, Babesia Duncani IGM 80 positive, IGG <40 negative. Other coinfections deemed resolving/negative
Reference lab ELISA: negative
Advanced Laboratory culture: negative

My impressions are as follows…Babesia has never been symptomatic that I know of, and I read a study that implies it may have alternative vectors. I am skeptical of Igenex testing, and even if Borrelia was positive, I would not know if the infection was still present. Based on lack of known bites, negative culture, lack of Lyme sequelae, primarily neurological presentation, and rarity of encephalomyelitis in the United States, I am inclined to think the MS is not caused by systemic infection. However, there have been a few things in my history that give me enough pause to be thorough. I am putting effort into restoring the microbiome shortly, and would prefer not to revisit antibiotics and undo progress and investment in that area. So, this is my last chance to appropriately evaluate Lyme for some time. I have two options that have come to mind to provide some clarity, and therefore two questions. Thanks so much for the help and any other thoughts on the matter.

1. If I wanted confirmation of active disease caused by Borrelia in order to treat further, would a spinal tap with an intrathecal index be the best bet?

2. Given the chance of a false negative on a spinal tap, I have the opportunity to receive a month of intravenous ceftriaxone if desired. Considering I failed the aforementioned regimen, would that be enough to see lasting benefit, if I actually had Neuroborelliosis?

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Ms vs Lyme Differential Diagnosis

Post by Henry » Wed 30 Dec 2015 20:22

Why would anyone in their right mind come to a website like this to get reliable medical advice? You should be discussing matters like this with your physician, not strangers who often don't know what they are talking about. Wake up and use your God given brain for heavens sake.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Ms vs Lyme Differential Diagnosis

Post by duncan » Wed 30 Dec 2015 22:05

Henry is such a charmer, 17slae. I do believe he is a good representative of much of Mainstream Lyme's attitude towards patients.

Hopefully someone may be able to speak to you about your questions, either via post or thru a pm. You may wish to use this website's search function - there is a rich history of studies and discussions you may find relevant.

17slae
Posts: 3
Joined: Sat 19 Dec 2015 0:34

Re: Ms vs Lyme Differential Diagnosis

Post by 17slae » Tue 12 Jan 2016 0:43

Thank you Duncan. I have decided to pursue a spinal tap. I am planning to ask for a Bb antibody index and PCR tests. I have an upcoming appointment with a neurologist. Perhaps the following should be a separate question.

For those who have had a spinal tap ordered by a neurologist, would the aforementioned tests be available at a laboratory they would typically work with?

User avatar
LHCTom
Posts: 341
Joined: Mon 22 Oct 2012 4:18

Re: Ms vs Lyme Differential Diagnosis

Post by LHCTom » Tue 12 Jan 2016 5:02

Given the serious nature of your condition, you might consider asking for a C6 peptide test as a double check Lyme and its species variants. Stony Brook is a good laboratory. The Immunetics C6 ELISA is better able to detect non-burgdorferi species and is comparable to the CDC 2T. Borrelia miyamotoi is beginning to be seen commonly now that they are looking for it. The test you took is designed based on the burgdorferi species and Europe and Asia are different plus new species are being found in the US. Different species could show up as a near positive Western Blot and negative burgdorferi ELISA.

Both labs can test blood or CSF fluid.

Stony Brook Immunetics C6:

http://medicine.stonybrookmedicine.edu/ ... 20form.pdf

Imugen for B. miyamotoi and burgdorferi

http://www.imugen.com/education/miyamotoi.html

http://www.medscape.com/viewarticle/846337

http://www.cdc.gov/ticks/miyamotoi.html
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

17slae
Posts: 3
Joined: Sat 19 Dec 2015 0:34

Re: Ms vs Lyme Differential Diagnosis

Post by 17slae » Thu 14 Jan 2016 2:17

Thank you for your reply LHCTom, that info was very valuable. I spoke to Stony Brook today and will use them for the CSF/Serum(intrathecal) ELISA with reflex to Western Blot, as well as the C6 peptide test.

User avatar
LHCTom
Posts: 341
Joined: Mon 22 Oct 2012 4:18

Re: Ms vs Lyme Differential Diagnosis

Post by LHCTom » Sun 17 Jan 2016 22:58

I would also go beyond double checking Lyme as the etiology of your problem. I would recommend that anyone who is diagnosed with a "Syndrome" where the true cause is not known, needs to have a serious differential diagnosis looking for treatable causes before living with it.

MS is thought to be an autoimmune or related to immune dysfunction that leads to demyelinating of the insulating covers of nerve cells in the brain and spinal cord. But that is a bit of a cop out.

Lyme is not unique as a chronic low level infection that "distrubs" the immune system causing effects that appear like an autoimmune disease like Arthritis. There is a rather long list of low level infections that can become chronic and cause autoimmune-like damage depending on how and where the immune system ends up attacking. Many of these infections are as difficult to diagnose as active as Lyme has been. They have not had the attention Lyme has received. Some examples are:

Staph spp.
Sterp spp.
E Coli
Samonella
Shigella
Yersinia
Borrelia
Neisseria Gonorrhoeae
Pseudomonas aeruginosa
Bratonella spp
Mycobacterium spp
Brucella spp
Tropheryma whippelii
Chlamydia Pn and spp
Ureaplasma pn
Mycoplasma Pn and spp
Toxoplasma Gondii
Various fungal infections

and others

Many have cross reactions with Borrelia surface antigens which can show up as a positive or near positive on a Western Blot for Lyme

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287758/

Just to make things worse, some of these infections are not curable with 3 weeks of an antibiotic just like Lyme. Once they find their hiding places deep inside cells or biofilms, neither your immune system nor antibiotics can easily stop them. The IDSA 3 weeks of antibiotics does not work for many infections and only a few like TB - a mycobacterium have been accepted. The bad news is the Lyme problem is not just spirochetes, its any bacteria or microbe that can find cover and sit and irritate your immune system into an auto-immune-like behavior! The big Lyme controversy goes beyond Lyme. The IDSA attitude is not restricted to Lyme and nor are the infections. This problem exposed in Lyme is much bigger.

So a near positive or positive Western Blot without a positive ELISA might mean your antibodies were not produced or declined or you have a related species like B. miyamotoi OR you have a cross reacting infection of one of the above.

Many of the autoimmune conditions have been linked to the gut microbiome with some kind of dysbiosis and or intestinal permeability problem. For example, macromolecules in your gut that are created by your gut flora (microbiome) or even bacteria itself are leaking into your blood via your intestinal walls. That in turn can cause various allergic reactions or stimulate an autoimmune-like dysregulation of your immune system. It can cause an imblance of the Th1 ( innate) versus TH2 (adaptive) immune system that weakens one side or the other. For example, an allergic reaction that pushes your adative immune system, weakens the TH1 or innate side.

Then the B cells and T cells are pushed toward IgE or the alergen weakening the others such as IgM, IgG etc.. Your adative immune system must work in concert with the innate to both detect through antigen presenting cells and kill via macrophages or other innate mechanisms. Your immune system is a bit like a zero sum game. Maybe its not zero sum but near- zero sum and when its pushed toward say TH2 ( adaptive) and then toward IgE ( IgE mediated allergy), that detracts from the innate and other adaptive functions. You may have heard of immune compromised or not. Well its not black and white. The immune system can be partially compromised openning the door for opportunistic problems the compromised portion is relied on for.

People have experienced a cure to a number of auto-immune conditions via a fecal transplant which wholesale changes your gut flora or microbiome. But thats a shotgun approach that could backfire. It does suggest something in the microbiome was triggering the immune system problem and the lucky has it cured via the fecal transplant. Even RA has been traced to specific gut dysbiosis.

So before giving in to an autoimmune syndrome diagnosis forever, I would want to thoughly check out every possible infection that could be the origin and have your gut sequenced looking for dysbiosis. I participated in a metablomics study that found molecules from my microbiome in my blood and other markers suggesting a strong allergic TH2 imbalance. This was consitent with my 5x IgE and IL4 which indicates a strong TH2 and IgE response that might explain my lousy NK functionor low IgG1 and IgG3 for example. I'm just throwing this out because there are a whole range of gut or infection related problems that can lead to an autoimmune problem like MS and until I felt confident a competant expert had been rigorous in ruling out one of these as a treatable source, I would not give in.

In the engineering world we have specialists in RF circuits, analog circuits, logic circuits, firmware, software etc... but also systems engineers and architects. The systems engineers and architects can look at the total problem and guide the team of design engineers until out comes a product like an iPhone. If you treated the development of something like an iPhone like we do in medicine, nothing would work. Its analogous to asking hundreds of engineers to develop a complex product with no guidance. You would end up with garbage. Medicine has no such systems people. Integrative doctors try but don't have a large team of specialists and specialty specialists to go to the limit of medical system on every patient. I hate to say it but given this and the desire by insurance companies to hold costs low and their effect on doctors, you must take on the role of integrator unless you are lucky enough to find the right teaching hospital open to this kind of top down bottom up approach until they run out of ideas or find the problem.
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: Ms vs Lyme Differential Diagnosis

Post by Lorima » Mon 18 Jan 2016 3:02

17slae wrote:Thank you for your reply LHCTom, that info was very valuable. I spoke to Stony Brook today and will use them for the CSF/Serum(intrathecal) ELISA with reflex to Western Blot, as well as the C6 peptide test.
I would ask for Western blots (IgG and IgM) regardless of what the ELISA result is. Stony Brook is one of the few non-specialty labs that will do that, if specifically requested. The reason is, that the ELISA is less sensitive and less specific than the Western blots. It is used routinely because it is cheap and gives a numerical read-out, needing no skill to do or interpret; but you are researching beyond those considerations.

I agree with LHCTom that you should rule out infection before treating for a presumed autoimmune disease, as suppressing the immune system will simply make an infection worse, in the long run. If inflammation is a problem and steroids or otherr immune suppressants are indicated, you don't want to take them without antibiotics or antivirals, depending on the suspected infection.
"I have to understand the world, you see."
Richard Feynman

User avatar
LHCTom
Posts: 341
Joined: Mon 22 Oct 2012 4:18

Re: Ms vs Lyme Differential Diagnosis

Post by LHCTom » Mon 18 Jan 2016 17:20

I would ask for Western blots (IgG and IgM) regardless of what the ELISA result is. Stony Brook is one of the few non-specialty labs that will do that, if specifically requested. The reason is, that the ELISA is less sensitive and less specific than the Western blots. It is used routinely because it is cheap and gives a numerical read-out, needing no skill to do or interpret; but you are researching beyond those considerations.
I completely agree with Lorima that if you plan on sending blood and CSF to Stony Brook, ask for both an IgG and IgM Western Blot in addition to the C6. They are or used to be one of the few excelent labs that both allowed a Western Blot with a negative ELISA AND used their own Western Blot design based on a dual antigen strategy. This has the advantage of being more sensitive to a broader strain and even species diversity. If I was diagnosed with MS or a serious auto-immune, I would not give up until I had looked via multiple labs and techniques for all the infections that could lead to an MS-like condition. Once the immune system damages the myelin surrounding the nerves, healing can be difficult but stopping further damage is essential. If the immune reaction is due to an infection not found or gut dysbiosis and/or permeability problem, there are a variety of strategies for helping the condition that might help.

I would also submit samples to a lab like Clongen ordering a full battery of Molecular tests with pre-enrichment for Mycoplasma, Bartonella, Babesia and Borrelia. Mycoplasma PN is typically caught from people while Bartonella is typically caught from a cat bite or cat scratch. They don't offer testing for all the infections I listed but for many. PCR tests has both advantages and diadvantages. Depending on where the sample was taken from and whether it had the microbe or its DNA fragments in it, it can produce a false negative. Having CSF fluid is important given the neurological brain effects of MS suggests the infection may be in the brain and will appear in the CSF fluid before blood. Getting CSF fluid is not easy like blood. Use it broadly! But when it comes up positive, its 100% unless it was caused by contamination. But once you get a positive for something like MS, you have a valuable lead. By repeating the test, the probability of a false positive due to contamination can be made diminishingly small. If you review the form below you can see the excellent range provided in a non-teaching hospital lab.

If it was me I would use my strategy of asking for or paying out of pocket for a PET/CT looking for evidence of Lymph node reaction. Then the biopsy can provide a direct lead to the infections that have been found to cause what was found in the biopsy. It adds credance to looking for infections and adds posssible leads as to what infection might have caused it that can then be tested for. Its nice when the range of possible or probably infections is prioritized so the insurance company or doctor doesn't feel like its too expensive or they are fishing. If it was me I would push for fishing in the middle of the Pacific since your life is at stake. You are your own best advocate!

http://www.clongen.com/wp-content/uploa ... t_form.pdf
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

User avatar
ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Ms vs Lyme Differential Diagnosis

Post by ChronicLyme19 » Tue 23 Feb 2016 3:35

The suggestions the others have posted so far I would say are very helpful and are all good things to consider. It's rather sad, but you have to be your own advocate. If you are given a diagnosis, you must ask why, and then question the methods to make sure it really is the right diagnosis and that it can explain everything. Many times people get a diagnosis because that one particular doctor thinks it fits the closest and they can't find a better explanation at the time, rather than there being hard evidence for it. Sometime it just means you need to dig deeper to find better evidence. Keep searching until you find hard evidence. (Back in my pre-Lyme days I was once told I had an autoimmune disease because of a positive ANA and it turned out to be just mono.)

If the treatment they give you does not make you better, keep searching as you might just be unlucky enough to have multiple issues at once. It's possible you could have MS AND an infection, or some random combination of medical problems. It's not until all the puzzle pieces are put together do you regain your health.

I do really like LHCTom's idea of targeting the lymph nodes and figuring out what's there to help rule out infections. I'd also recommend adding looking into your immune function, and food sensitivities as well to the list of things to check in those who are chronically ill.

My other thoughts...

Per the success rate of the spinal taps with Lyme I think there is a thread on the forum somewhere covering this. I don't recall the positive hit rate on those being too high.

I believe there is also a thread on the forum someplace mentioning I think it was a european study that compared high dose oral doxycycline to IV antibiotics saying they were similar efficacy. I would read that study carefully. Everyone seems to have a different response to antibiotics. I think a lot of it depends on what your other issues are, coinfections, how long you've been infected (and the permanent damage inflected), your immune system and genetics. Many people do feel better with long term antibiotics, but others do not. Some people go on antibiotics and need to scale back to a level in which their body can keep up with cleaning out the junk from the infection and keep the inflammation down. From my own experience, I was able to get my neuro symptoms (major memory issues, blurry vision, peripheral neuropathies, mood swings, and suspected CN11 involvement) under control with high dose multiple oral antibiotics and herbs, and avoided IVs. My docs and I decided that since we couldn't find conclusive hard evidence for neuro involvement (like lesions, seizures, complete cranial nerve dysfunction like Bell's palsy) to try sticking to the orals as long as I was seeing improvement with them.

Oh, and I love plain kefir with a little bit of stevia in it for restoring your good gut bacteria. Good greek yogurt works pretty well too. I've had to live on antibiotics for 3 years now because of the immune deficiency and kefir has saved my gut from destruction. Many grocery stores and big box stores are now selling it so you don't have to go to a natural food store and pay $$ for it anymore.

Best of luck on your search for your keys to good health.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Post Reply