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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
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551343 tn?1506834118

Hi some results back and my neuro examination

Hi i just had a long letter from my doctor i went to see to MY other normal GP. I got a copy. Basically the examination she found this:

She had a soft systolic murmur. Fundoscopy revealed a pale disc on the left. Reflexes were brisk, plantar responses were extensor and vibration sensation was absent in her left leg. Nystagmus was present and Rombergs test was positive. Dorsalis pedis ++.

My lymes results are:

Hi just got my results from Igenex via my doctor. I believe i dont have Lymes but confused as the Western Blot seems to show bands.

The test result is:

Lyme IgM/igM seriology was within the normal range
Lyme IgM Western Blot was reported as negative with an indeterminant band at 41kDa
Lyme IgG Western Blot was reported as negative with an indeterminant band at 83-93 kDa, + band at 66 kDa and ++ band at 41 kDa.

I also have low B12, choline, oleic acid, zinc, glutathione, Vitimin E and antioxidants.

Haematlogy profile showed a low haemoglobin at 11.4 g/dl

Biochemistry profile showed low levels of sodium at 134 mmol/L and transferrin saturation at 19%.

End of.

So it doesnt look as though I have Lymes but not sure what all the indertiminate bands etc mean, so i have asked Ricobord and lymes forum.

The neuro test was does that all mean anyone know?

Thanks Mariax
13 Responses
1530171 tn?1448133193
Hi Maria. I just lost my complete response to you!
Anyways, due to time considerations I'll be brief.
Just let me know, how long it took for the sample to reach IGeneX Labs.
Also your Pos. Romberg's is linked to your B12 deficiency.
The only type to accept is Methylo-cobalamin! You can take it on your own
sublingually, if not taking shots.
Do transdermal glutathione, as it will boost your anti-oxidizing capacity, recycle Vitamins, so less waste processing. Reduce antioxidant intake by at least half within a week or two. IT IS YOUR BEST OPTION!
Your  systolic Heart murmur is clinically insignificant.
Your fundoscopy info is limited, however, pale discs indicate insufficient
pigmentation possibly linked to nystagmus.
You may ask for the images and do your own comparison with images from the Canadian Neuropthalmology website/fundoscopy self-quiz.

Plantar response is extensor, meaning abnormal metabolic and  or
neuronal states, such as hypoglycemia, hypoxia and neuronal/srtuctural
deficiencies and or lesions. Variable and inconclusive results are common.

Dorsalis Pedis test ++, I assume is positive for peripheral circulation.

Absence of sensation of vibration is one of a number of indicators
of neurolgical deficiency, possible neuropathy.More investigation is needed
to determine anything conclusive.

Your low hemoglobin levels could be linked to your low B12. Keep an eye on this. It will take a few weeks for the B12 stores to rise.
Do not take cyanocobalamin B12!!! Only methylocobalamin shots or  same in sublingual on your own.
I'll continue another time.
gtg!
Blessings,
Niko
1530171 tn?1448133193
Hi Maria! Second day back, no Jet lag and feeling good.
Going to see Cavalia tonight- this fabulous horse spectacle-a b/day
present to myself,my wife and our daughter, as we're all born in June!
And since we were all apart, this will be our belated b/day celebration.


Igenex Western Blot Break Down by band.

(There are nine known Borrelia burgdorferi genus species specific KDA Western Blot antibodies (bands) against an estimated 1800 spirochete different proteins.  We are still at the infancy stage with this, lol!)

9 cross-reactive for Borrellia

12 specific for Bb

18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain - Has cross-reactivity with several different types of viruses

31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses

34 outer surface protein B (Osp; specific for Bb)

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)

45 cross-reactive for all Borellia

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]

You can draw your own conclusions from this list.

In my next life I'd rather be an archeo-glyphtologist.
It would be way easier to interpret those chiseled into stone bird, feather and fish symbols than one's lyme test results.
Just kidding!
One option I would recommend-easier said than done without an LLMD-
is a "trial" lyme abx treatment, which could serve as an alternate dx in a way.
It may cut through a lot of the lyme b/s, but you need someone expert -ideally an LLMD as I said- to oversee this.

My Lady, you have a challenging life to say the least!
Your determination to get to the bottom of this is unprecedented!
However, it could also be your worse enemy, as this determination EMPOWERS your condition, greatly.
Take it from a guy that befriended pain and suffering in the pursuit
of health and wellness.

Have Faith in your Angels, as they are the Messengers of Love , Peace and Joy (the strongest powers in the universe).
Love and Hugs!
Niko

551343 tn?1506834118
Hi and thank you so much for taken the time to help me. I have taken on board all you say.

Yes I am a challenge lol.

At least it shows perhaps I had Lymes and it has migrated out of the blood stream into organs, and that is why it isnt showing as current.

Ricobord tells me that what they should do now is put me on antibiotics for about 2 months to get the auto immune system active to go and find the naughty bacteria, and bring them back into the blood stream, so they can be seen as current. I get that.

I would not be surprised if it wasnt Lymes to be honest. If I did not have the western blot band i would have said hurrah, but to have 41, 66, 83-93 the 83 specifically I am sure it will turn out either that or a co infection.

Enjoy your evening it is what I would love to do. You are very lucky.

Big hugs. Mariax
1530171 tn?1448133193
The idea is with the 2 month abx treatment, is not to activate the immune system, because antibiotics do the opposite (anti:against, bios: life).
The appropriate antibiotics could have bacteriostatic action, rendering the
Bb pathogen inactive, thus giving the opportunity to the immune system to detect them while they are static in the tissues.
I have talked about this in the past, I believe.
A strong and completely balanced immune system is needed to take on this successfully. While on antibiotics, a well planned regimen of prebiotics and probiotics is required, in order to preserve to the healthy gut flora as antibiotics WILL destroy this delicate balance. 80% of the immune system lies in the gut, so any attempt to implement such a treatment will likely fail
if all this is not taken in consideration.
Also high levels of vitamin D3, often deficient with people suffering from various chronic conditions, are required for strengthening the immune system and particularly those immune cells that identify and tag
new pathogens, not in memory.
So keep  all this in mind, before taking this course of action.
Love and Hugs,
Niko
1475492 tn?1332887767
I am totally confused Maria...

It appears that you have had Optic Neuritis in your left eye based on this comment, "Fundoscopy revealed a pale disc on the left."

Based on the exam you have damage in various places where lesions are present.

I do not know anything about Lyme so I don't understand all the tests associated with that. Can that be placed in non-medical speak? :)

XOXOXO,
Thinking of you.
~Barb
Avatar universal
Just to throw in my two cents....Lyme can cause pretty much every symptom of MS.  It is the presentation and progression that vary, such that Lyme mimicing MS eventually doesn't quite seem right for MS.  For example, I have brain lesions, but there are too many for my symptoms, and none are enhanced during new symptoms. My tingling moved around and would come and go.  My neuro said that wasn't consistent with MS tingling.

Lyme can cause a positive ANA level, can show a couple oligoclonal bands in the CSF, can cause small lesions in brain white matter, ON, tingling, numbness, burning, heat sensitivity that exacerbates symptoms, fatigue, and cognitive problems. It can cause symptoms to vary, or to come and go, or to even present in "attacks" that flare up and subside. (This is what mine did.)

I shudder to think how many people suffer for years with MS-like symptoms who don't get an MS diagnosis because doctors realizes they don't meet the criteria for one, but are left to suffer with their unknown neurological ailment because doctors don't know that Lyme can mimic MS (or ALS or Lupus, et.al.) and can generate false negative Lyme antibody testing.

Usually, in a very ill Lyme patient, many of their tests are inconclusive or "normal." It is extremely frustrating for the sick person when doctors are stumped.
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