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.
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
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
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.
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!
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
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,
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? :)
Thinking of you.
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.
FINALLY some answers.....So when do you go back to doc AND if not Lymes?????what is our next step?
Hi Niko sorry yes i didnt mean to confuse you are quite right out the antibiotics my brain is pooped that is what i understood from Ricobord but didnt express it properly. IF i do get put on the antibiotics I will do as you say believe me.
Sidesteps. Yes I do have lesions always have had. I had the first episode of going blind in 1999/2000 cant remember exactly when in Brazil. then I had bad episode of eye problems in 2004 which was again ignored and told it was just a bit of dry eye, and some silly eye infection (cant remember the name). But I had terrible pain in my left eye for over 6 months and burning in my eyes and blurring and double vision.
I have been telling my hubby that my eyesight is worsening, and the colour on the telly has been getting drab on dark colours like red, so i expect it must still be active in some form, as the pale disc did not show up in the early stages.......
Now my new doctor gave me a diffferential diagnosis of MS or Lymes, or MS with a co infection of Lymes, and I believe my results will be co infection of lymes with MS.
Ricobord. My tingling is static and constant. It could now be an issue with B12. I have had ongoing problems really since Brazil, but worsening from 2004 when i had my problem with the eye, and was ill and off work for 6 months. (First episode). Told it was dry eye and stress.
Then the usual things from 2004, Heat intolerance, balance issue, dropping things, so on and so forth until my big one in 2006 september 11th when i couldnt walk.
IF I got bitten by a tick I am wondering when.
I checked on Brazil not sure if i got bitten there, as i wasnt out in long grass or walking in an area with sheep and stuff.
I was in the States in Florida i think 2 years prior.
In England I did a lot of fishing at the lakes where there is long grass, sheep grazing all around and deer. I found this:
Dr Isabel Oliver, regional director of HPA Gloucestershire, said: "These figures show that the south west remains one of the highest regions for Lyme disease cases, which may be due to the number of popular countryside attractions in the region.
I dont remember ever being bitten by a tick, the only time was in 1969 in Cyprus when i took a short cut through a grassy field with sheep, and when i got home about 2 hours later I found a fat tick on the back of my leg. I hardly would think that was the cause of my problems now.
Anyway we shall see, it is up to my doctor next week to tell me where next.
From what i have read though, with my WB results they should be taking it seriously.
I still have the problems with my rash on ribs and back, which keeps flaring up, and still have cat scratch lesions, which flare up and then die down but leave a scar.
I am so excited silly isnt it really, but with my neuro results, proven ON and now something on the Lymes blood tests I finally might be getting answers.
I knew i was sick, it is just convincing the doctors lol.
I just want to be well again. I want to go back to work, still travel, and do things. At nearly 61 my life at the moment is over.
Bring it on ticky, if you have invaded my blood stream Maria is going to get you lol.xxx
I am so hopeful that you will finally get some answers and improvement soon!
I can't remember...did you get tested for Bartonella? That scratch rash is really distinctive for Bartonella...my doc will diagnose it just on the rash.
Hi my bartonella was actually negative. Which was weird.
In inactive phases of any such pathogenic infectious conditions,
most tests are likely to return negative results, so there's nothing 100% conclusive, as these pathogens hide in the tissues OUTSIDE the blood circulation. Masters of evasion , Bb, Bartonella, Babesia, Mycoplasma etc., use cell DNA intelligence, cellular membrane and other possible viral/bacterial/human/ unknown mutation characteristics to avoid detection!
On top of this, there are hundreds if not thousands of different strains of these micro-organisms.
You can see why conventional medicine is at at loss in dx and treatment
in this field.
So weird is the norm in these investigations.
Patience,determination and perseverance my friends!
i am following along with this thread, hoping and praying with every fiber in my being that your doc can get you back on your feet again.