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

[JackieCalifornia]

You don't have to send your personal email address to communicate to another poster here -- in the upper right corner of this page are three links:

Inbox / Login / My Shortcuts

Click on 'Inbox', then click 'Send Message', and in the "To" box, type the recipient's screen name here, just as yours is MrsAristotle and mine is JackieCalifornia.

The message will go directly to the person's own Inbox on this website, and will be shown as from MrsAristotle.  I use that approach and it works well and preserves privacy.

Just a thought.

[MrsAristotle]

oh you will have to PM me your email address ok.

[MrsAristotle]

Hi hun, have you seen you GP for lymes tests?

Mine came back negative so i went to Breakspeare but they are expensive, but finally got results which point to lymes after all those years.

Even though you had antibiotics you can sitll have lymes. I will email you hun.

[asalka]

I was bitten by ticks in the Regents Park 3 years ago,was feeding birds...lucky me:( I went to the hospital and very " good" doctor said nothing wrong ,don't worry,prescribed me some antibiotics...But later on my feet and hands became like frozen,so hard to move them,painful to walk,can't hold even my phone for a long now,have heart beating ,dizziness,fever..I found that i have Lyme disease myself...put all my symptoms in Google..now depressed...don't know what to do...where can I find proper Llmd in UK...I have a son ,he is just 12 years old . Will be very appreciate for any advice. My email manzura_hon***@****

[omar88]

I hope the best for you maybe a new diagnose will be better for you and you will get your life back

[mojogal]

Good attitude! Fight on!

[MrsAristotle]

Hi I am not bothered about the MS diagnosis weirdly enough. Its on the back boiler for now anyway, as we need to address the lymes and viruses.

NOW if we address the lymes and viruses and the B12 and I recover really well in the next couple of years, we can then probably through out the MS label.

The MS label really and honestly and truly is not my concern lol. I can live with MS but I cant live with the devistation that sneeky lymes can do to me.

I am just waiting for this letter then i can start to attack.xxx

[mojogal]

The friend does have Lyme, confirmed.

[Ricobord]

I am so sorry you are so miserable.  I know what it feels like when you just want to withdraw from everyone and everything and hole up in a dark, quiet room.  Be encouraged that there are better days ahead.  It won't happen immediately, but it will get better.  I am amazed at the things I could do this week that I couldn't have even considered last summer. Hang in there!!

One thing that has helped me is a "sleep" medication the hospital neuro gave me. It is nortriptyline, and is actually an antidepressant.  It really does help me sleep, and when I tried to cut back the dosage, I felt crummy.  That is when I realized that it was also helping with my Lyme induced depression. I am so grateful for this med for both benefits.  I encourage you to talk to your doctor about it. Having a bad case of long term Lyme + coinfection is indeed depressing!

[JackieCalifornia]

ummmm, it *could be* MS that your friend has ... but until Lyme has been ruled out by a Lyme specialist, I would withhold judgment about it not being Lyme.  Given the spread of Lyme across the country and indeed around the world, it will at some point (if not already) exceed the incidence of MS ... but the neuros haven't twigged to that yet.  

[mojogal]

No worries. I can't remember anything.
I don't want to sound like a broken record but Dr James Scaller, who has written books has said if you have Lyme you are more than likely going to be told you have MS. I have been through it as well as many others I know. Last night my BFF called me from VA and said a girl she works with has Lyme, she started saying she went to a neurologist....I interrupted her and said, she took an MRI and she was told she has MS. Bingo. My BFF told her to come on this site so we can tell her it's not MS. My purpose of being so passionate about it is to prevent this misdiagnoses for other people since it is a very scary thing to go through. I am lucky enough to know or talk with some well known LLMD 's and they all say the same things.
Now you take this info and keep it tucked in mind as you proceed on your journey. I truly wish you the best.

[MrsAristotle]

Hi thanks for the comments, actually a good idea about  tackling the NHS over the diagnosis of Ehrlichia and EBV. I am just waiting for my copy letter to my NHS doctor from my private doctor  who is writing to her to explain all that is going on etc, then i see my NHS doctor to talk about treatment for lymes and the EBV and the B12.

I feel a bit calmer now having a little better day today. I keep having horrible days where my head just buzzes so loud i cant think straight and my legs burning all the time is wearing me out.

But i know now i am on the right road, and hopefully if I approach it right i will get better.

IF it comes down to money then so be it, i have some savings, and i would rather use those to get half way well, then sit on this blooming recliner for the rest of my sorry life.

I was talking to someone i know today who has MS and he was telling me he has just enjoyed 2 weeks in Portugal, and I am thinking why cant i do that lol.

Why cant I?

I am so ill right now just going out on my mobility scooter to take Lucy my dog for a quick walk makes me hurt and my head buzz lol.

I feel that i should just sit in a dark room and wait for god or something right now, never mind jet set off to portugal for a holiday lol, now that would be great.

Thanks agian for caring so much about me i do appreciate it, i am sorry i cause so much confusion with my posts but anyone who has MS or Lymes knows how bad memory and thinking can be screwed up lol, well that is my excuse anyway. xx

[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.

[MrsAristotle]

Hi sorry i havent made myself clear.

I have LYmes, co infection and MS.

She will not be recommending steroids.

The only reason why she wants to address the EBV and CMV with anti virals is because these viruses apparently can react with the antibodies on the peptides ELISA test they did, which is showing protein for Lymes but is it picking up the viruses? IF we attack the the EBV and CMV and then do the tests again, IF they are sitll showing protein positives then we know the lymes is still really active. The co infection is but would not be causing me the neuro symptoms.

Sorry i never seem to make myself clear lol.

She is a Lyme literature MD but is being cautious. However, she is also expert on MS too and has seen my MRI films etc and believes I do have MS as well.

[JackieCalifornia]

MDs who are not conversant with Lyme will often misdiagnose it as MS.  The treatment for MS is steroids, which suppress the immune system, which is the exact opposite of what needs to be done for a bacterial infection like Lyme.

I would want to be very very sure I did not have Lyme before treating with steroids.

[mojogal]

I got the same diagnosis and almost died from the steroids they tried to give me. What LLMD 's say now is Lyme is MS. Lyme is the great immitater. I was misdiagnosed with MS, Lupus, Hoshimotos, mono, vasculitis, EBV, CFS and more. Unless your tests are run at IgeneX, I am sorry, I don't buy it.
I have brain lesion, Lyme lesions, electrical pain and every other MS symptom. How scary is it to wake up on a ventilator in the hospital half dead because of misdiagnoses. I am trying to help you so you don't have to go through the pain and suffering that most of us have been through.
I am involved with ILADS educational program, telling my story to mainstream doctors to help them learn about Lyme.

[MrsAristotle]

Well the jury is out, she told me today MS.

She said i have had Lymes and they think the co infection is still active Erlichia but would not be causing all the neuro problems.

However, she thinks the new lymes test antibodies are reacting to the several viruses i have had, EBV, CMV and shingles

She said that we need to address these viruses even though the test show they are not necessarily active the titers are still very high and could be causing my MS to flare really badly and also muddy the waters for the Lymes testing as the antibiodies showing on the ELISA could be reacting against these viruses.

She is prepared to write to my GP and tell her what she thinks about it all and she really thinks i need to urgently go on Anti viral meds.

She has based the diagnosis of MS on the first MRIs I had and the latest MRI I had 2 years ago and also the results of my VEP test and the deficiency showing up in my bloods which are classic for anyone with MS and my neurological exam testing she did and the ongoing problems I am having now.

She wants me to go into their hospital to have detox etc to see if it would help my MS, because of the toxic chemicals they found, but she knows fiances are a restraint. They are sending me a cost.

She said I have a lot going on really and until i get some of the other things under control my MS is going to be a problem for me.

As to the Lymes she feels that we need to sort out the viruses ASAP then re test or something. Sorry i was a bit shocked by it all and didnt take much or all of it in.

What do you think guys. She was quite adamant about the MS diagnosis and is writing and telling my GP her findings, and asking her to put me on anti viral ASAP.

[TheLightSeeker]

Mary, I just have a feeling that you're approaching the tipping point.
Something is bound to "give".
Your expectations though, are even worse than those of Confucius:
"Expect NOTHING and you'll never be disappointed"
  and totally the opposite of mine :
  "I am reasonable, I EXPECT miracles!"
  Cannot give any points for your statement. lol!
  Cheers!
  Niko
  

[MrsAristotle]

Hi I actually kind of understand that lol.

Thank god i dont live in Naples now lol. I hate cockroaches.

Anyway not long before Tuesday now. Will let you know how i get on. not holding my breath to be honest i expect it will be just another knock back.