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Lyme diagnosis, but so full of doubt :(

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Posted 11/27/2014 4:07 PM (GMT 0)
Hello everyone . . . I'm a new member, but I've been visiting this site for over a year now and got some great info here - thanks - I feel like I know you all already, and really want to introduce myself properly and hopefully get your input on what you think my problems are. I'm really sorry if it's a bit long . . .

It's just that, I am so plagued with self doubt over this whole lyme thing :(.

So, one day late November 2012, my leg felt a bit odd - kind of floaty, bit weak, just odd. Continued for a couple of days, getting a bit more pronounced, so went to my GP (general doc). Was admitted to hospital, had CTscan and kept in as they thought a stroke, which was a shock as I wasn't in any high risk group. Couple of days later, they did an MRI and said not a stroke but an "area of inflammation" on my brain, probably an immune reaction. He diagnosed a clinical isolated syndrome, and prescribed three hour-long steroid drips over three days. He said the the steroids would reduce the inflammation, calm my immune system, and all would be well. He seemed quite confident about this, & said I'd be discharged after the 3 days. But my leg deteriorated rapidly, to the point where it was paralysed, my face went numb on my left side, my eyelids, nose, neck felt numb. I had aching in my chest. It was horrible. When the consultant reviewed me after the three sessions of steroids, he was visibly shocked that they had not worked. He was clearly not expecting that, and looked really puzzled. He kept me in for a few more days, but then they discharged me (there was a sickness bug on my ward and I wanted to get out!).

My leg remained paralysed at home. I was also dizzy, with some tingling in my left hand/arm but also slightly in my right arm. After a couple of weeks, I was able to wiggle a toe, and gradually the movement came back. I could hobble about with a frame by January. Had a repeat MRI scan and they said the "lesion" had reduced slightly. By February, I was able to walk unaided again but still a bit unsteady & with a limp.

Of course, this was all a huge shock, but I felt I was on the mend and all would be well. But in march/April, the chronic fatigue set in. I was exhausted, with a desperate need to sit down after walking a very short distance. Couldn't get round the supermarket. Became very depressed. Hopeless. Frustrated. Depressed. Still dizzy and woozy-headed.

Then, in June/July after a walk through a meadow a few miles from home (as I was having a good few days) I was bitten by a tick and there was a hint of a bullseye rash. It led me to research Lyme disease, and I realised that the symptoms I'd had all along seemed to tally. A succession of GPs weren't interested - no Lyme disease here, it's very rare, etc etc. But all my symptoms (all neuro), together with the dramatic failure of steroids in hospital, really seemed to point to it. When I looked back, I realised that, in the preceding few years, I had suffered with insomnia (waking in the middle of the night and unable to get back to sleep), severe and increasing headaches, stiff neck, slight dizziness which went away on its own after a couple of days, heart palpitations (completely out of the blue - thought I was dying) and panic attacks, increased anxiety, lack of motivation, energy, and tiring easily. It all seemed to add up. I didn't have any new symptoms after I discovered this tick, but I felt that I could easily have been bitten before and not known about it.

So, I went to the clinic in the UK (private) that deals with lyme. The only one I think. They sent my bloods to igenex and also to a lab in Germany, and the results came back positive! (I will try to post them later)

The NHS absolutely do not recognise these results as they are from overseas. So I am paying for all my treatment. I've been on various antibiotics and supplements for a year now, and have just switched to herbals (Buhner essentially). My leg has definitely improved, my energy is definitely improved, but the dizziness and slight numbness/tingling are still there. I have never had a major herx -headaches on tinidazole, but that's about it. Although I have had horrendous bouts of depression, crying, constantly on the brink of tears - not sure if that's to do with herxing or not. Anyway, any time I speak to anyone in the NHS - GP, consultant, nurse - they fill me with doubt again and dismiss the lyme diagnosis, hinting strongly that it will probably be MS. I try to ignore them, but I can't help wondering if maybe they're right. Maybe I AM on the wrong path. Even with my positive blood tests, I guess I'm worrying that maybe the NEW tick bite gave me lyme, and my initial problems WERE caused by MS. It would seem like such a cruel coincidence, but I just don't know any more. In which case, maybe the lyme has gone and I'm continuing to treat because I still have symptoms, but maybe the symptoms are MS? So they'll never go.

I'm so desperate for someone to talk this through with, but I only see my LLMD every 3 months and can't afford to go through every little thing with her as she costs a fortune.

Please, please can you tell me what you think. Do I have lyme?? Am I on the right path?? I would be SO grateful for your views. Thank you so much xx
Posted 11/27/2014 4:43 PM (GMT 0)
I've been through something similar in the last year, where I saw a set of physical problems and began backtracking the signs and symptoms myself after a conventional workup that explained nothing. Modern medicine is unfortunately too focused on acute syndromes and severe symptoms while disregarding trends in one's health. In my case the circulatory and cardiac implications forced me to act.

Here's the thing about MS and Lyme. If you're treated for Lyme it won't make MS progress faster, but after your experience with steroids the major tool for managing MS has now been excluded. This narrows the options, right? And you've tested positive for Lyme. Time to treat it.

I recently saw an Infectious Disease doctor (after I'd already seen an LLMD and been diagnosed and given prescriptions for abx to treat Lyme/Bart). I wanted to see what he'd say, what ideas he might have, what differential dx he might come up with, and my stated goal was to recover enough to return to work, not to confirm Lyme or anything else. The dude was useless, absolutely useless, and he had no explanations, suggestions, or symptom control ideas to offer. I would have considered it a waste of time except for this-
It proved that the LLMD was the only one offering me any help whatsoever! So I accepted that a controversial dx is better than none and began taking the abx as prescribed. I'm getting a little better already and I've been taking the meds for only two weeks.
Posted 11/27/2014 4:58 PM (GMT 0)
btw, I still retain elements of doubt. That's the mark of a sane and cautious person. But once I really stepped back and looked at the state of affairs through my professional eyes (I'm an RN) it has become an inescapable conclusion that conventional medicine is offering me nothing to address the debilitating effects of the illness.
So even though it's controversial and not completely understood, Lyme&Co. is still the best descriptor for what I need to get treated. And responding to the treatment tells me we're getting somewhere, albeit slowly.
Posted 11/27/2014 4:58 PM (GMT 0)
Keep on treating, I read where a Lyme Literate doctor said every autopsy that was done on a MS patient showed spirochetes in there body or brain, I can't remember exactly.

I also read before where a second bite is more likely to have a bullseye then the first. If that's the case, then you probably got bit before is why you had the leg problem and all the others.

I would definitely keep on the Lyme treatment. People who are more experienced with Lyme will chime in also.
Posted 11/27/2014 8:08 PM (GMT 0)
FlossieUK—
So sorry you are struggling with all of this—but you are in very good company here. Many of us have very complicated context for getting a diagnosis, given the years we've been ill and the many many system breakdowns that confuse the lyme & co.-specific symptoms. Lyme mimics so many diseases.

Totally agree with SpeyFisher's statement regarding the steroid treatment—I think that is a huge clue. And if you are still unsure—at some point you can get more specific MS testing to give you a little more peace of mind. It takes time to work it all out. More time and patience than you think you have.

Regarding the association between lyme, ALS, Parkinson's, MS:
This is a clip from the "Under Our Skin" documentary (full length video clip below, too) by Dr. McDonald:
youtu.be/GCLwauRh2gQ

Klinghardt also made a statement in the film at 2:50:
"We never had—in the last 5 years—a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia bergdorferi. Not a single one."

Full movie:
youtu.be/2JgR_Jfbhv8

Please let us know how things go for you —and keep posting! It helps so much. A lot of great info here and immeasurable support.

-p
Posted 11/27/2014 10:21 PM (GMT 0)
Thanks all who have replied so far - I'm grateful to anyone who made it through to the end of that saga! :-)

Just wanted to add my igenex results:

IGM - positive
CDC/NYS result - positive
18+
23-25+
28 -
30+
31 IND
34+
39+
41+++
45-
58+
66-
83-93 IND

IGG negative
CDC/NYS negative

39 IND
41 ++

There was also a multiplex PCR text (?) from igenex, which detects DNA sequences (??). For that, the results read:

Genomic B Burgdofori NEGATIVE
Plasmid B Burgdofori POSITIVE

Also, a separate test from the invitalab test in Germany states:
"Morphologically positive reaction to borrelia garinii p41 antigen (internal fragment, recombinant) and positive reaction to borrelia burgdofori senso stricto full antigen, indicating an active lyme borreliosis"

So, do I definitely have lyme?? These results seem to suggest that I do, but . . . .? What do you think? :-/.

Thanks all xx
Posted 11/27/2014 10:36 PM (GMT 0)
These results scream from the hilltops that you have Lyme. Definitively. No question. Not even Wormser would argue it. CDC +.

That won't keep your mind from running you around a bit, Flossie, but at least you get to start from a factual basis. Many have to wrestle with doubt from equivocal results, even if there's definitive sets of symptoms.

Now, to get used to the idea, accept it and get a mindset for your personal recovery, that's the next task.

I think the hardest part for me so far is not so much the diagnosis, but the feeling of abandonment that comes from having my illness denied or ignored by those who we perceive to be authoritative and informed. It blows the societal paradigm on a deep level.

Post Edited (SpeyFisher) : 11/27/2014 3:39:28 PM (GMT-7)

Posted 11/27/2014 10:46 PM (GMT 0)
I would have the clinic test for the coinfections endemic to your area as well. Lyme doesn't often travel alone.
Posted 11/27/2014 10:52 PM (GMT 0)
Oh yes… sorry—but welcome to the club. You have the "holy grail" of results, which will be helpful in multiple ways. Hope you can start treatment ASAP.

Agree SpeyFisher—
The criminal abandonment of lyme sufferers by conventional medicine MUST change.

Don't forget to sign the petition!
www.healingwell.com/community/default.aspx?f=30&m=3253129

-p
Posted 11/28/2014 7:25 PM (GMT 0)
Thanks so much for your reassurance. Just need encouragement that I'm on the right path and treating the right disease! I do feel reassured about the testing being pretty conclusive. My only niggling worry is whether I could have had something else going on first (when I got ill with my leg) then got lyme from the tick bite I actually found last summer, and that's what showed up in the test. But the symptoms haven't changed since that bite, so seems to be a continuation of the same thing. Plus, I did have the failed steroid treatment which happened before that bite, so was already pointing towards lyme? It's really just added to my anxiety over the whole diagnosis :-(.

I am already in treatment - have been on abx for a year, and just switched to Buhner herbs. Energy and leg function are improved, but still have brain fog & fuzziness/dizziness in my head! :-(. Will it EVER go away?
Posted 12/1/2014 3:46 PM (GMT 0)
I'm so sorry . . . I really hope you don't mind me bumping this . . . but I would really love any thoughts or words of wisdom on my last post . . . what do you think! :-/ Plus, my fears on the dizziness and whether it will ever get better . . . :-(. I'd be so grateful for any thoughts. Thanks so much
Posted 1/2/2015 9:03 AM (GMT 0)
Hello FlossieUK,
You worry that you had neuro symptoms BEFORE the tick bite. Is that it? Reasonable doubt to have. Here are my thoughts:

First, you had symptoms before the first tick bite, that is the first tick bite THAT YOU NOTICED. Many of us were bitten by the tiny nymphal stage tick and did not realize it.

Before your symptoms, did you enjoy walking in meadows, grasslands, pastures and woodlands? How long have you been exposed to ticks? You obviously live in an area where ticks carry Lyme. Where in the UK are you?

Secondly, you have Lyme disease. From the sound of your symptoms, you have the Lyme Neuroborreliosis (LNB) that is far more common in UK and Europe than in the USA. LNB imitates MS very well.


Have you been tested for coinfections? Rowingmom suggested this. I second this because from what I've read, and experienced personally, anitbiotics for Borrelia can be less effective for Bartonella (and other cos). It is possible you have been well treated for Bb but not Bart, Beb, etc.

My husband had brain lesions and was diagnosed with MS and Bell's Palsy, until Lyme testing positive. His Bell's Palsy did not respond to steroids but cleared with 2 weeks of abx. Other symptoms are slowly getting better. He still has some dizziness too.

But we too have wondered whether he had MS and then got a tick bite. But so much of his MS presentation was atypical: confluent brain lesions, rapid onset after tick exposure, no oligoclonal bands in CSF, etc. And so much has improved with antibiotics that we are moving forward with the belief that it is not MS, even when we can't know for certain.

We live in the US, but both got Lyme and coinfections while hiking (fell walking) in the Lake District and Scottish Highlands in June of 2014. I found this article which suggests criteria for interpreting Lyme testing in Scotland:
http://jmm.sgmjournals.org/content/54/12/1139.full

Scottish, like European WB criteria, is SO different from CDC. 2 Bands + 41 = pos And they consider IND bands as weak positive (but give them less weight). For Scotland, these are the Lyme specific bands for IgG:
18, 22, 26, 30, 32, 34, 39, 46, 58 and 92 kDa (my IgM had 18, 31, 34, 39, 41, 58)

Whether your IgM Western Blot is CDC positive or not depends on how soon you were tested after your tick bite. What I understand is that medical orthodoxy believes a positive IgM is not truly positive for Lyme more than four weeks after bite. I guess they think we have Lyme symptoms and Lyme IgM antibodies, just not Lyme disease.

Best of luck to you.

Post Edited (Fell Walker) : 1/2/2015 2:13:04 AM (GMT-7)

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