CONFUSED WITH RESULTS END OF THE ROAD?

[MrsAristotle]

Hi well all my tests for lyme are back.

I have tested positive for 5 bands:

IgG 23
      31
      39
      41
      66
      93

3 bands Igm

23
39
41

On the paperwork from Igenex, and Immunosiciences it says you have to have 5 bands specific IgG and 2 of IGM, well i have 6 and 3.

I have just received the last results from Invitalab and it says MELISA negative.

No active lymes.

So does that mean I dont have it now then, but did have it one time.

This is a good result isnt it does it mean I can rest easy and it isnt lymes anymore?

So confused with all this to be honest, and i cant talk to my doctor untli the end of the month lol.

My sympoms are worsening the burning in my legs is constant right now, so it is looking perhaps it is MS after all. Mariax

[Ricobord]

Your plan sounds like a good one.  Focus on what you know and can treat, especially Lyme and Ehrlichia.  If Lyme is controversial and the NHS won't treat without certain test results, then perhaps you can be covered for Ehrlichia, and take abx that treats both.  Can visits to your current doctor be covered under NHS if you have an actual diagnosis (Ehrlichia, EBV, etc.)?

You are right that if you do have MS, you can't treat it right now. You can't suppress your immune system as it needs to be bolstered to fight the bacterial and viral infections.  As you treat Lyme, your immune system will perk up and fight the viruses back down.  I hope you can get started on antibiotics, soon so you can start on the road to getting better!

Hang in there!

[TheLightSeeker]

Hey Maria,

I have been an advocate of the infectious nature of all these chronic diseases all along. They are all related because of  underlying infectious conditions.
So could MS be another face of Lyme or vice versa? Is CFS, FMS,MS,Lymes all similar expressions of the same disease, with slight variances according to the symptoms and given all these different labels?
What if I were to name them: Lyme CFS, Lyme FMS, Lyme MS
or MS-CFS, MS-FMS and MS-Lyme? You're right. Labels are just labels!

EBV and CMV get reactivated by Lymes, as Lymes is immunosuppressive
Actually the majority of Lymies ( can I say this for Lyme sufferers?)
have these two viral infections and the general population has them in high numbers. 95% have EBV and 80% CMV - dormant till the immune system
gets seriously suppressed!
So your doc wants to treat those with antivirals and then the Lymes.
The chicken and egg question. These conditions along with the shingles get activated by lymes, or does lymes get activated by them?
Antivirals vs Antibiotics.
Possible false positive for Lymes? Then what happens to all those Lyme patients that have the EBV and CMV, which is the majority!
False positives are the exception. There's something that does not fit the puzzle. May be I'm missing something crucial here.
To be continued,
Hugs!
Niko

[MrsAristotle]

Hi i understand what you are all saying about the MS diagnosis. HOWEVER, it means nothing its just a label, because there is NOTHING she or anyone else can do about it. IF it is MS though, addressing all the other things like viruses and lymes will ulitimately give my MS (if i have it a break).

At the moment when she did my neuro exams she said MS straight away, she never said LYMES. She told me according to all that is really holy (my words) the tests for LYMES would not be showing such a degree at the moment, as my symptoms have worsened especially with the heat we had.

She would not expect Lymes to be so active now if this was the case I would assume more would have shown up on the tests. Whatever ails me is PROGRESSIVE, in its disability.

It really doesnt make NO difference this MS label not really like i said there is nothing for me anyway treatment wise.

HOWEVER, she is going to sort out the viruses and the Lymes the co infection is still active so i will be having this sorted out as a matter of urgency BUT finances are a concern, so she is trying her hardest to find a way the NHS will pay for it all.

Really guys MS is not my concern nor hers, the Lymes is BUT there are certain things that someone with MS has that someone with lymes doesnt I have no clue what it is lol, but she seems to have picked up on something, and she is not a young women, but quite aged and experienced in BOTH so I just assume she knows what she is talking about. Perhaps having lived with someone all her life with active MS she has seen things in me that she saw in him I have no idea. Really I am just assuming she is a good doctor and knows her stuff. Perhaps I am being naive but she is the only one who has given me any hope.

This clinic is the leader force in Lymes in my country, they have taken many many person out of limbo land who had un diagnosed LYMES. I have to TRUST her opinion on this and her decision for attacking this.

She is the only one so far who has taken any of it seriously.

Niko I know there is no 100% confirmatory diagnosis of MS, i know a few people who have been told they have MS and I often think yeh right sure ok lol.

BUT, I know when it started, and I can map every part of this disease it is classic in its presentation, but there were other ODD things that made no sense to MS, and that is why my neurologist was always a bit wary of giving me a diagnosis of it. He has ALWAYS said there was two things going on, and perhaps he too was right.

I dont want to focus on the MS it is of no importance to me right now, what is though is support and some sort of plan to put me back on an even keel because at the moment I feel so ill and in so much pain I have nearly given up. She is the only person who has made me feel that I am not insane and I have some sort of life left to look forward to.

So its onwards and upwards attack the viruses and the lymes and give them a run for their money. Thanks guys, i will get there.

[mojogal]

How can you be sure you have MS and its not the Lyme which mimics MS?
I have all the same symptoms of MS but it was caused by the Lyme, neuropathy included, alll the tests results said MS. My LLMD knew it was Lyme in disguise.
I wish you the best!

[TheLightSeeker]

There is no 100% confirmatory dx for MS! The ultimate dx is clinical,
based on history and symptomology in conjunction with other findings form
MRIs and other tests. Therefore there's a "grey" area of objectivity, as the possibility of subjective input form the diagnosing specialist cannot be
excluded.
What do MS and Lymes  have in common?
Motor-sensory impairment.
Fatigue
Balance issues.
Cognitive issues
Optic Neuritis
Similar MRI findings
There are probably more, but this gives you the idea.
Because your specialist suspects both MS and LD,  there are not too many ways to appoach this.
Had it been one or the other suspected, the are key differences, that would
easily determine the correct dx-in addition to dx criteria-by process of
exclusion in the symptomology. i.e: Peripheral Neuropathy would be consistent with lyme disease but not ms. Lymes has an overwhelming
array of symptoms that are not common with ms. I think I know all your symptoms by now lol!
The abx (for LD) challenge starts sounding better by the minute.
Challenge your specialist to present you with her argument that makes
the ms dx stick, in light of the information I'm posting here.
Regardless, I would insist to take the abx challenge first, unless there's a strong counter-indication, for unknown reasons to me at this point.

The antivirals might  have very little effectiveness because of the latency
nature of those infections, poor oral bioavailability and there are no known licensed drugs for EBV. Also there might be a contra-indication with lyme.
I have to dig out some notes as it's not fresh in my mind at present.
Strength, perseverance and determination my dear.
You'll need all this and more.
Hugs!
Niko

[JackieCalifornia]

Sorry, I had indeed missed that information.  Sounds like the doc is being thoughtful, which is a rare quality these days!  

Take care -- hope things get better for you soon.