Seeking differential diagnosis and opinions

[Wobblywheel]

I received an MS diagnosis 20 years ago. Whenever I consult a medical professional and tell them the initial diagnosis their eyes "glaze over" and they never look any further.

My history is given below. Your thoughts would be much appreciated.

HEALTH HISTORY

46 year old male, 184 cm tall, 71 kg.

Family history – Parent with Fibromyalgia.

1988: Epstein-Barr virus at age 20.

1994: I was holidaying in a warm and humid climate. During the holiday my vision suddenly went yellow and very blurred. I spent the next two days in bed with flu like symptoms. I recovered but whenever my body temperature increased my vision went blurry. No other indications. I recall that in the months leading up to the holiday, there was a twitch under one of my eyes.

1995: Consulted a Neurologist who did the usual physical /examinations – reflexes, sensation, auditory responses, visual etc. No spinal tap. A MRI was also done of the brain. It showed multiple small lesions in the brain. The Neurologist concluded that there was a multifocal CNS disease pattern consistent with Multiple Sclerosis. He thought that was the correct label for now and that no further investigation would be expected to lead to anything practical. He also stated that I had Optic Neuritis, Uhthoff’s effect and delayed auditory responses.

I understood that I had Relapsing Remitting MS.

1997/98: Another holiday in a warm and humid climate. After 4 days my walking became difficult. That night I could not bear my weight upon standing and fell. I woke durimg the night and the room appeared to be spinning. That has not happened again. I spent the next 3 days in bed feeling unwell. I had no noticeable changes or new symptoms after this “episode”.

Commenced on a course of Interferon beta. After 6 months an anti-bodies test was performed. To remain taking the drug the anti-bodies needed to be 1,000 or less. Mine was at 10000. Thus I ceased the Interferon and started o n Copaxone for a few months. Then I was recommenced on Interferon, as the anti-body test was removed. After a few months I ceased all drugs, as I felt there were no benefits.

At this stage I was walking with a slight limp and could not run. I had previously led a very active life. I continued working full-time in a stressful job.

2003: Ceased working and commenced a Paleo/Swank diet. Over the last 12 years I have taken vitamins/minerals and other supplements. By 2003 my limp had worsened, I was still walking without assistance. I had fatigue daily. Spastic bladder. I started physiotherapy and going to the gym.

2006: Hospitalized due to Uhthoff’s effect. Given saline IV and 5 days of Methylprednisolone IV. Saline effect - dramatic improvement. Methylprednisolone effect – none.

2008: I started using a walking frame. I also saw a new Neurologist who made the following comments:
- That my level of disability was greater than what he would expect given the number of lesions.
- That I had never had an episode and previous “episodes” could be attributed to Uhthoff’s effect. The “episodes” in 1994 and 1997/98 had not lasted long enough (only 2 or 3 days). Thus it would appear I had Primary Progressive MS.

Over the years I have had multiple MRIs. The number of lesions has remained stable. There have been new lesions but old lesions have healed. There has been a very gradual worsening of symptoms over time.

2012: Volvulus operation to remove 9 inches of bowel. The removed bowel already showed signs of cell death. Very mild discomfort periodically experienced occasionally for many years. Prior to operating pain levels 2 or 3/10. After operating I only took Panadol.

2013: Hair Mineral Analysis test. The test revealed many mineral levels were low. The only toxic metal which showed was aluminium, which was high.

Consulted a Gastroenterologist regarding Fecal Matter Transplant. He started me on a course of Vancomycin and Rifaximin for chronic constipation. The day after commencing the medication, the effect was dramatic – defecating several times a day with ease. I continued the anti-biotics for 2 months.

Then I saw an Integrated Doctor, who interpreted the hair test – likely heavy metal toxicity. I did a 24 hour urine test whilst taking DMSA 100 orally. A spot urine test was also done. The 24 hour test revealed high levels of aluminium, arsenic, lead, mercury and nickel. The spot test showed that I was not eliminating heavy metals.

3 mercury dental amalgams removed.

After taking DMSA 100 periodically for 18 months, the 3rd test showed that aluminium was not detectable, arsenic was at safe levels, lead had halved but was still at unsafe levels, mercury had increased slightly, nickel had increased and now thallium was high. I will continue chelating using Zeolite, cysteine, alpha lipoic acid, chlorella etc.

Towards the end of 2013 I consulted another Gastroenterologist. He performed an endoscopy and a colonoscopy. Results - 1 polyp removed, 2 haemorrhoids and eosinophilic esophagitis.

2014: Neurologist consultation and MRI of brain and spine. No changes to number/size of lesions. No atrophy of the brain – which the Neurologist thought there would have been.

12 months after initial Gastroenterologist consultation – underwent FMT. Cured chronic constipation. No other symptom changes.

Influenza A – lased 6 days.

I often feel dehydrated, even though I drink 2.5 litres of water a day. Dry skin. Urine is a level 3 or 4 on the Urine Hydration chart – borderline dehydrated.

Amino acids were tested - virtually all were low except GABA and 1 methylhistadine. Have increased protein intake.

Other tests done:
- Liver/kidney function, heart rate, blood pressure, blood oxygen – always normal.
- Cholesterol - LDL high
- Blood sugar – normal
- Red cell folate – normal
- Plasma homocysteine - normal
- Ceruloplasmin serum – normal
- Blood group – A
- Testosterone – low
- Cortisol random – normal
- ESR- normal
- Low C-reactive protein - normal
- Celiac disease – no
- Helicobacter bacteria, Borella, Chlamydophila pneumonia, Adenovirus, Parainfluenza - all negative
- Vitamin D – normal
- Vitamin B12 – normal

The progression of the disease has been very slow over 20 years. I am now in a wheelchair and have been for 2 years. I have lost upper body strength and muscle.

[Scott1]

Hi,

I think you are about to be hit with a ton of advice so I will be brief. Beware of a reading called normal. Beware of how some tests are done.

My views and history can be found here- http://www.thisisms.com/forum/regimens- ... 24019.html so I wont repeat them.

I do believe you need to do something about the EBV (Leonard has good posts on this). I have used Valacyclovir for this but some people get a herximer response to it.
On the Amino acids the main ones to watch are those that are non-essential as you are supposed to be able to make them. If you can't you have a problem.
Recently I had a pretty big attack but I am recovering. I am avoiding the prescription solutions as much as possible and currently doing the following-
Morning
A bowl of coconut cream blended with fresh fruit (homage to Terri Wahls)
3 Eggs (thumbing my nose at Terri Wahls)
300mg Curcumin (shift response from Th1 to Th2)
1000 Acetyl L- Carnitine (improves cycling to ADP to ATP)
900mg n-acetyl-cysteine (repeat at intervals throughout the day to total 4 doses
glass of Pomegranate juice and probiotics
1 Valacyclovir

Lunch and dinner avoid Gluten and Dairy (Homage to Wahls)

mid afternoon
teaspoon of L-arginine in water

Before bed
750mg Coenzyeme Q10 (critical for electron transport and cycling of ATP)
1000mg acetyl L-Carnitine
300mg Curcumin

I want to get back to my Carrot juice but finding it is outside easy access for me at the moment.

I think I am still in recovery mode but have no issues with fatigue. Recently I discontinued a Beta blocker as the dose was so low but I need a heart rate above 60 and this was limiting it.
The last thing is a new experience with neurological pain leading a temporarily a dead arm and I still have troubles with my hands feeling odd. The doctor wants me to take Lyrica but I think I will put up with pain and focus on exercise and manipulation.
Hope this helps.

Regards

[NHE]

Beware of a reading called normal. Beware of how some tests are done.

Yes. For example, many labs will call a vitamin B12 level around 200-300 pg/mL normal. However, it's best for B12 to be between 500 and 1000 pg/mL. Why belabor B12? Because neurological symptoms due to B12 deficiency can be indistinguishable from MS. See the following thread... http://www.thisisms.com/forum/natural-a ... 24857.html

[jimmylegs]

hi and welcome ww

that's a lot of great info you've provided. i have a couple of follow up questions, if you don't mind. can you provide any more detail on the degree of physical activity involved in your active life prior to 98?

may i inquire re details of the supplement regimen you've been on? your infection history, bowel removal surgery and subsequent low mineral findings, as well as the high LDL cholesterol level, speak to an ongoing nutritional issue in spite of the 12 yr regimen.

curious whether you have had bloodwork done on any serum minerals of concern for ms patients, such as magnesium and zinc?

i would expect a low normal serum zinc level given your ongoing heavy metal and infection problems. has zinc been part of your long term supplement regimen? have you evaluated your diet recently, for daily zinc intake?

your mention of dehydration in spite of water consumption makes me curious about your magnesium history. same questions for mag as i've asked above for zinc i'm also interested in the kind of water you choose most often for your 2.5 litres per day?

good to hear that the docs have tested your vit d3 and vit b12 levels. do you have the actual results handy? as mentioned, normal levels can be suspect. for at least 4 different nutrients i can think of, patient groups have low normal levels while healthy controls have high normal levels.

i'm also curious about your vit d3 intake level around the time of your last serum 25(OH)vitd3 test? that info could provide a sense of your absorbtion and utilization.

[lyndacarol]

Welcome to ThisIsMS, Wobblywheel.

As the subject line says you are "seeking opinions," here are my thoughts:

As other posters have said, "normal" test results can be misleading. A lab's standard ranges are established locally and statistically by those taking the test. The actual numbers are more revealing.

I assume the "Other tests done" were done recently in 2014; if these included a Complete Blood Count (CBC), there should be a line labeled MCV (mean corpuscular volume). If this number is in the high-end of the standard range, this indicates that the red blood cells are enlarged – this is called macrocytosis and can be a late sign of vitamin B12 deficiency.

I wonder if you know the names of the specific tests which were ordered in order to arrive at the conclusion that your vitamin B12 was normal. The serum B12 test alone is inadequate and widely considered to be inaccurate. The HoloTranscobalamin (HoloTc) test is preferred by many today. If the HoloTc test is not available to you, a serum homocysteine test (commonly available today) and a serum (or urinary, which is considered more accurate) methylmalonic acid test should be done to confirm the B12 situation.

Any person at any age (even in his 20s) can develop a B12 deficiency. Taking a B supplement before testing can skew the results and mask a deficiency.

[Wobblywheel]

Thanks Scott11.

EBV - I have taken a product called Astra8 before. It is a combination o Chinese herbs that fight viral infections. I am very hesitant to use medications.

Amino Acids - following the test I have taken BCAA's and a whey protein powder. Prior to the test I had a rice protein powder. It appears that I absorb the whey but not rice protein.

Glad that you are recovering. There are many protocols that helped the individuals who propose them. We have to workout what works for us.

[Wobblywheel]

Thanks jimmylegs.

Prior to 98 I was running regularly, sailboarding, surfing. sailing, hiking etc.

Supplements:

1 Multivitamin
1 B12
1 Folate
1 Lethicin
1 Kelp
1 Vit E
1 Vit D
1 Calcium/magnesium
1 Ginko
1 Ginseng
1 Glutamine
Fish oil
Coconut oil

Lunch:
1 Zinc
1Vit C

Dinner:
1 Vit D
1 Zinc
1 Taurine
1 Magnesium

Plus many other supplements over the last 12 years.

The blood serum mineral levels have always been "normal". I have always taken zinc supplements, much higher doses this year. Varied between forms of zinc - chelated, sulfate and picolinate.

Same answers for magnesium as zinc. Form taken chelated. Filtered water consumed.

Only B12 levels have been tested. Virtually all tests have been requested by me of the doctor/s. B12 level at 659 mol/L, which was at the higher end of normal.

Cheers

[Scott1]

Hi again,

I have no view on Astra8 but herbs can be powerful and not always well regulated. No less dangerous than western medicine. I had no trouble with Valtrex, some did. There's a few variables to consider. I doubt it will touch EBV infection in a meaningful way.
Test your uric acid level. That will tell you something about ATP recycling and whether the viability of cells is compromised. In particular whether your purine level is showing signs of a major problem recycling ATP to make energy. Read "Metabolic Cardiology'" by Stephen Sinatra or my posts about that.
Check by a fasting amino acid test what levels your amino acids are at. I like to focus on Arginine but Tryptophan is used to make up for the loss of B vitamins which could look 'normal' but be scavenged by infections like mycoplasmas. You can see if B absorbtion is affected if Tryptophan is low.
If the eight essential amino acids:isoleucine,leucine,lysine,methionine,phenylalanine,threonine,tryptophan and valine are depleted despite a good diet then that implies a bug is scavenging them before you get a look in.
If you want to stay just with herbs then you are thinking about bugs so then definitely read "Healing Lyme disease coinfections" by Stephen Harrod Buhner. It is a masterpiece. It is much more than a book about Lyme.
I think you need a lot more data on your current health status. Particularly numbers would help.
Regards,

[Wobblywheel]

Thanks lyndacarol.

B12 test was serum b12 (fasting). I will request a HoloTc test and CBC.

[jimmylegs]

ah ha, so much good info! if only we could turn back the clock there might be more value referring you to this info:
http://www.thisisms.com/forum/search.ph ... mit=Search

solid regimen. may i inquire re some additional details? such as per pill amounts for the the vit E, vit D3, the cal/mag, the zinc, and the plain mag?
curious if you have ever found/tried magnesium glycinate? may i ask re the form of vit E? is it an E8 complex? regarding your zinc intake - for balancing purposes, is there any copper in your zinc product, or failing that in your multi? and if so, how much are you getting per day?

comments - i notice you take magnesium with either vit D3 or with vit D3 and calcium. that combo doesn't bode well for your mag status. while it is a great idea to take mag and d3 together, it's also quite important to get some mag intake when it doesn't have to deal with calcium or vit D and your body can just absorb it for other important purposes. i got myself into a really scarily debilitated situation a few yrs ago by always taking mag and d3 together. it might do you some good to switch up lunch and evening as follows:

Lunch:
1 Zinc
1 Magnesium
1 Vit D
1Vit C

Dinner:
1 Zinc
1 Taurine
1 Magnesium

re normal results, the 'normal' ranges for many blood nutrients include treatable deficiency levels. this fact is established in the scientific literature. many healthy controls have high normal levels while patient groups have low normal levels. if you have actual levels and units available for serum mag and serum zinc, and even serum ferritin and serum copper, the numbers would likely be pretty helpful in terms of identifying some potential corrective action items.

re the filtered water - what kind of filter? RO? or something else?

your b12 levels look good. i am confused re the apparently contradictory statements 'only b12 has been tested' and 'blood mineral levels have always been normal'. can you clarify?

as an aside, on the uric acid subject my levels were stuck on the ms average for a frustrating bunch of years until i identified and corrected a zinc deficiency. having tested zinc and ua together several times now, i have observed a strong positive correlation. if zinc is up, uric acid is up and vice versa. uric acid is another one of those pesky 'normal' range deals. at my lab the reference range is 140-360. my first test came back 194 and i thought oh well so much for mine being low. but then i found the study showing the ms patient average was 194. further, healthy control levels are more like 290-300. when my zinc was deficient (single digits in umol/l) i could not budge my uric acid out of the 190s and once i got my zinc up to the mid teems, my ua level bounced right up to 278.

as you can probably imagine by this point, i agree with scott that having some more numbers would help evaluate your current status if you can put serum zinc, serum mag, serum ferritin, serum copper, and serum uric acid on the list, you'll be off to the races

[Wobblywheel]

Thanks again Scott11.

I'll get my uric acid levels tested. I am currently taking arginine, lysine and tryptophane. The amino acid urine test I did a few months ago showed all 8 essential amino acids were depleted as well as virtually all other aminos. I increased my protein intake using a whey based protein powder. This seems to be resulting in some muscle gain. The rice protein powder I previously used appears to not have been absorbed. Whey is dairy and dairy is meant to be avoided

I looked at Stephen Harrod Buhner's website, which was of interest.

Cheers

[Wobblywheel]

?Thanks again jimmylegs.

natural vit E 500 IU, vit D3 1000 IU, the cal/mag 230/115 mg, the zinc 25 mg, and the plain mag 300 mg.Never tried mag glycinate. Only copper in the multi 6 mcg.

I am aware that calc/mag should be taken 2:1 and that calc competes with mag when being absorbed. I forgot to mention that I also take 1 mag before bed.

Water filter is an activated carbon filter.

Only b12 levels have been tested and not b3.

I will get new serum mag, serum zinc, serum copper, serum uric acid and a HoloTranscobalamin test.

Cheers

[jimmylegs]

no probs.

ok more good info. 'natural' vit E sounds promising. does it have 4 tocopherols and 4 tocotrienols? also, how's your diet for vit E? fan of sunflower seeds at all?

vit d3 1000 IU per pill sounds good too. i'd be very interested to see updated serum levels, if you could consider adding serum 25(OH)vitD3 test to your list

cal mag 2:1 is an upper limit. ie calcium intake should not exceed double your daily mag intake. calcium is often supplemented to excess in relation to magnesium. every now and then you see a cal mag supplement at 1:1, which is better. for you, having that bedtime dose of plain old magnesium in the mix is probably a really good idea. if you're curious, have a peek around some of the whole unprocessed foods listed on this site - i searched for foods highest in calcium and lowest in magnesium. in many categories the ratio is nowhere near 2:1 cal to mag, with the predictable exception of dairy.

zinc 25 mg (x2) might be good enough - the blood tests will help confirm. 6mcg copper wouldn't be enough to balance it though. if you can, look for a balanced zinc copper product. the one i am using right now is 50mg zinc citrate with 2mg copper.
additional reading re zinc induced copper deficiency here https://www.google.ca/?gws_rd=ssl#q=zin ... y+symptoms

i am looking forward to seeing your new results when they come in don't forget the d3

[Wobblywheel]

Thanks again jimmylegs.

Natural vitamin E is d-alpha-Tocophero. I have sunflower seeds with my gluten free cereal.

I will add the 25(OH) vit d3 test to the list.

My mag intake exceeds the calc intake. I’ve tried various forms of mag to alleviate muscle tightness/spasms.

I’ll let you know the test results.

Cheers

[jimmylegs]

hiya, no problem

ack watch it with that d-alpha tocopherol. as one fraction of an 8 part complex it could be (is likely) suppressing your gamma tocopherol levels and generally messing with your natural vit e distribution. gamma tocopherol is antiproliferative - suppressing it via isolated alpha tocopherol intake can have undesirable effects over time. related reading: A nutrient approach to prostate cancer prevention: The Selenium and Vitamin E Cancer Prevention Trial (SELECT). http://www.ncbi.nlm.nih.gov/pubmed/20924966

a quarter cup of sunflower seeds a day can make a good dent in your daily requirement. not sure which of the 8 fractions it contains - i believe most of the available food vit E info is specifically for the alpha tocopherol component. i happened to learn at one point that corn oil appears to contain all 8 vit e fractions. i've made only half hearted efforts so far, to get organic corn oil brought in at a local shop, but i just found one that i might be able to order online. encouraging!

i saw that the supplemental mag intake exceeded calcium. is it the same for your dietary intake?
if you have not had a chance to try magnesium glycinate, i would recommend giving it a shot. also, have you ever tried epsom salts baths?

glad to hear you've added serum vit d3 to the list ttfn!