What to expect next from the Docs?

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johnj7b7r6
Posts: 2
Joined: Mon 8 Sep 2014 15:18

What to expect next from the Docs?

Post by johnj7b7r6 » Mon 8 Sep 2014 16:05

Hello to everybody, this is my first post, I am interested in anyone's thoughts on my symptoms and realise that 8 months into my proper investigation I don't really have a clue where I am heading with this. In fac t despite a lot of hospital appts and tests I feel like I am getting nowhere. I am due for a follow up with my neuro in 3 weeks time.

I have had 2 blood tests, the second of which was at Porton Down in Hants, UK, a specialist centre - the result was "reactive". I was given a months worth of oral antibiotics based on "it seeming a reasonable course of treatment"

Symptoms - Burning skin especially in feet and legs, twitching (mostly calf muscles, but anywhere from the scalp down), slurred speech, weak/hoarse voice, painful feet when standing for periods, rapid hand cramps when doing any manual work, excessive sweating (10 mins gardening = drenched), occasional co-ordination issues with handwriting, loss of verbal fluency and a significant drop in my libido over the last few years. I also have a stocking and glove peripheral neuropathy pattern with altered sensation in my hands and feet - waxy, cotton wool, dull etc.

The bulk of these symptoms started fairly suddenly about 2 years ago, there has been subtle progression although the burning skin only started in February and is now daily and the sweating is significantly worse this year.

My mass of tests resulted only on "a degree of neuromytonia" and a few non specific white matter lesions on the brain MRI. I had normal cervical/lumbar MRIs, normal SSEP, normal VEP, normal lumbar puncture and all normal bloods except for the lyme serology.

The antibiotics haven't made a difference, in fact since I stopped them my legs seem to burn daily and no longer intermittently.

I am wondering if I am going to be dismissed as an idiopathic neurology case or if I can rely on the medics to keep probing as things are clearly progressing.

I wondered if anyone is familiar with this symptoms and has similar issues and if there is another route I should push for investigation? The burning legs and feet is becoming a concern especially, I don't know if I should be asking for some kind of medication too - no-one seems that concerned.

And finally, I couldn't point to a history of camping in the New Forest or visiting other Lyme hot spots so there seems to be a huge reluctance to dx me formally.

Camp Other
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Re: What to expect next from the Docs?

Post by Camp Other » Mon 8 Sep 2014 18:48

johnj7b7r6 wrote:Hello to everybody, this is my first post, I am interested in anyone's thoughts on my symptoms and realise that 8 months into my proper investigation I don't really have a clue where I am heading with this. In fac t despite a lot of hospital appts and tests I feel like I am getting nowhere. I am due for a follow up with my neuro in 3 weeks time.
Hi, and welcome to LNE. Sorry to hear it's been 8 months of investigation, and a few years of disruptive, painful symptoms. Please let us know what happens at the neuro appt?
johnj7b7r6 wrote: I have had 2 blood tests, the second of which was at Porton Down in Hants, UK, a specialist centre - the result was "reactive". I was given a months worth of oral antibiotics based on "it seeming a reasonable course of treatment"
You might want to talk to some people on the yahoo mailing list, EuroLyme, about Porton Down, and Lyme disease testing/treatment in the UK and Europe in general. Even more so, go to the Lyme Disease Action (UK) web site, and contact someone there, as they have some excellent resources.
johnj7b7r6 wrote: Symptoms - Burning skin especially in feet and legs, twitching (mostly calf muscles, but anywhere from the scalp down), slurred speech, weak/hoarse voice, painful feet when standing for periods, rapid hand cramps when doing any manual work, excessive sweating (10 mins gardening = drenched), occasional co-ordination issues with handwriting, loss of verbal fluency and a significant drop in my libido over the last few years. I also have a stocking and glove peripheral neuropathy pattern with altered sensation in my hands and feet - waxy, cotton wool, dull etc.
Some of these symptoms overlap with Lyme disease and other tickborne infections, but they also overlap with other conditions, too. The reactive test, however, would lead me to want to investigate Lyme disease further, and if you have all these neurological symptoms, oral antibiotics might not be enough if Lyme disease is the cause.

But, I'm not a doctor, so anything I say is speculation regarding your care, and you would need to seek out a medical professional for advice and further treatment.
johnj7b7r6 wrote: The bulk of these symptoms started fairly suddenly about 2 years ago, there has been subtle progression although the burning skin only started in February and is now daily and the sweating is significantly worse this year.

My mass of tests resulted only on "a degree of neuromytonia" and a few non specific white matter lesions on the brain MRI. I had normal cervical/lumbar MRIs, normal SSEP, normal VEP, normal lumbar puncture and all normal bloods except for the lyme serology.
More data. Everything else was normal, but Lyme serology was reactive. Did you have any immunological studies done, or a CBC panel including ESR?
johnj7b7r6 wrote: The antibiotics haven't made a difference, in fact since I stopped them my legs seem to burn daily and no longer intermittently.
Which oral antibiotics did they give you and at which dosage for a month?

Was there any initial improvement or change in symptoms when you began them (before they got worse)?

How early into your 30 day treatment did you stop the antibiotics?
johnj7b7r6 wrote: I am wondering if I am going to be dismissed as an idiopathic neurology case or if I can rely on the medics to keep probing as things are clearly progressing.
That I don't know. Suspect it depends on the individual practitioner you see. You may need to see someone privately; you may need to get additional testing to pin down what's going on.

But if it is in fact Lyme disease, and they've given you a month of oral antibiotics, and you have a number of neurological symptoms - then you may need IV antibiotics to treat it. I've heard that getting IV antibiotics to treat Lyme disease is not easy in the UK, particularly on the NHS - but there may be private doctors you can see.

Either way - given this is progressing, and getting worse - it needs attention.
johnj7b7r6 wrote: I wondered if anyone is familiar with this symptoms and has similar issues and if there is another route I should push for investigation? The burning legs and feet is becoming a concern especially, I don't know if I should be asking for some kind of medication too - no-one seems that concerned.

And finally, I couldn't point to a history of camping in the New Forest or visiting other Lyme hot spots so there seems to be a huge reluctance to dx me formally.
I am very familiar with your symptoms. I've had a number of them, or similar enough to them:

- Burning skin especially in feet and legs (Burning in skin happens less to me than burning muscles with exertion)

- twitching (mostly calf muscles, but anywhere from the scalp down) (- yes)

- slurred speech (occasionally, less often now)

- painful feet when standing for periods (yes, and I actually can't stand long in one place, and my lower back also hurts a lot)

- rapid hand cramps when doing any manual work (my hands begin to burn and cramp with repetitive movements, more at the wrist or whole hand level - fingers are okay for a long time, so I can type for a while)

- excessive sweating (10 mins gardening = drenched) - (I got excessive sweating more at night, with a coinfection called babesiosis. That stopped, with treatment. But I have gotten a fever and sweat upon normal levels of exertion during the day (do you get a fever?))

- occasional co-ordination issues with handwriting (Not so much for me.)

- loss of verbal fluency (Yes, to a degree. Typing is far easier for me. People tell me sometimes when I speak, I skip words or drop the end of a sentence. It's happening less often now, but it happens. I'm more likely to substitute the wrong word for something, e.g. "chair" for "table" or "apple" for "pear" from closely related object groups.)

- and a significant drop in my libido over the last few years. (Libido? What's that? I occasionally have interest, but it's a small fraction of what it used to be. But pain and fatigue have gotten in the way of interest, anyway.)

- I also have a stocking and glove peripheral neuropathy pattern with altered sensation in my hands and feet - waxy, cotton wool, dull etc. (My feet are pins and needles at times, the soles feel like there are always thin socks on them even when no socks are there, and sometimes it's felt like I have a piece of masking tape stuck to the bottom of my foot in places when there is nothing there. I have cut my feet on occasion because I could not tell I was stepping on something. The soles are not consistently lacking sensation, either - some parts of my soles have more sensation than others. FYI, having peripheral neuropathy can also be a sign of diabetes, of which type 2 has become more common - I had this ruled out by my family doctor, though, who gave me a fasting blood glucose test and other tests.)

For me, though, the above weren't the most notable symptoms - especially early on, and also as time has gone on.

My major symptoms have been:

- Low grade fever at rest, increased fever with exertion
- Constant headache at the base of the skull
- Burning muscle pain with exertion
- Spike in joint swelling and pain that "jumps" from place to place - this knee one day, my shoulder the next
- Underlying constant joint pain that does not jump. Lower back for example.
- Occasionally an individual joint in one finger will swell and turn red, then I have trouble typing
- Fatigue from minimal activity, and feeling fatigued after sleep and rest. Basically, I am always fatigued, and exertion makes it worse.
- Short term to medium term memory problems. I forget whole conversations and series of conversations. I forget movies I've watched and books I've read. Taking notes helps, but you can't take notes of EVERY conversation. It causes frustration in relationships with others.
- Focus issues. Sometimes I have trouble focusing on what I'm doing, and tracking conversations (especially if more that one person is talking to me, or I'm trying to follow a discussion between two or more people).
- Messed-up sleep cycle. It's gotten better over time, but I used to have day and night nearly reversed, and would go to sleep at 4-6 am and wake up at 12-2 pm. Pain would be worst at night and keep me up, and I'd pace the floor in agony. I began to normalize my sleep schedule, but with breaks: I'd sleep from, say, 12-2, wake up in pain and be awake from 2-5 am, then sleep until 8 am, averaging 5 hrs broken sleep a night. This has, as you can guess, done nothing to improve my mood. (With additional treatment, I am now sleeping from about 12-7 am, and seldom waking in pain - so this is a HUGE improvement.)

One of the things I've noticed, for me, is that some of the symptoms have decreased in intensity with antibiotic treatment and even some time without antibiotic treatment. But as time has gone on, I've also had different symptoms arise, even while I was on antibiotics and as I went off of them.

I get the impression - anecdotally - that a fair number of people get better with additional antibiotics if they have persisting symptoms after initial 30 day antibiotic treatment for Lyme disease. But what "additional" is and how long that is seems to depend highly on the individual, and some people do not go back to their normal, usual selves even after additional treatment. I wish I knew why, and just how many - but I don't think anyone is reliably tracking this in a study and it needs to be.

As for your "Lyme hot spots": People have gotten infected tick bites in their own garden and walking through local parks. You don't have to be in a hot spot or well-known area for contracting Lyme disease to get it.

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ChronicLyme19
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Re: What to expect next from the Docs?

Post by ChronicLyme19 » Mon 8 Sep 2014 19:00

I'm sorry to hear you are in rough shape. I'm not sure if any of us here will be able to help you much.

From what I've seen on the forum here, there are folks:
1) With late/chroic lyme who antibiotics don't help and they have lasting neurological problems that could be from an active lyme infection.
2) With late/chroic lyme who antibiotics don't help and they have lasting neurological problems that from a past infection, ie permanent damage.
3) Folks like me who antibiotics still help
4) Some combo of permanent and ongoing damage

Just my two cents, but if you have full blown neurological symptoms that are form Lyme, I'm not sure the oral antibiotics would be enough to make a dent in a bad lyme infection. They usually give IV antibiotics for folks who have really bad neuro symptoms. Certainly sound like it could be lyme, but it's hard to say what it is. Many of your symptoms could be from other causes. Lyme symptoms often overlap with other major diseases you you must be ruled out for those.

Do you know what type of test the Lyme test was? Can you give us more specifics other than "reactive"? What conditions have they ruled you out for?

On thing that I would suggest for any chronic disease, is to keep a detailed daily journal of your symptoms. This will help you see if you are getting worse, staying the same or getting better. Sometimes the change is slow. Keeping track of it will help the docs out.

If you do suspect it is lyme, have you been checked for the other common co-infections? Not sure what the most common ones are in Europe, as I'm in the US, but here we also see a lot of babesia, which can cause the drenching sweats. There are several others people end up with as well. Do you feel tired/drowsy at all? One easy check is to look at your oxygen saturation levels, with the little pulse oximeter they put on your finger tip.

Did you ever see any ticks on you, or any weird red rashes? (Then again, not everyone gets a rash or see's the tick).

Other thing I might suggest checking, since you are in the UK, and maybe presumably of European ancestry, is to get tested for the MTHFR gene mutation. These mutations are a higher percentage in people in European decent than in other places in the world. I have both copies of the mutation, and so my doctor switched the form of B vitamins I was on and it helped me feel better. I didn't sleep longer, but my sleep was more restorative. I figure better sleep might help you no matter what you are battling.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

johnj7b7r6
Posts: 2
Joined: Mon 8 Sep 2014 15:18

Re: What to expect next from the Docs?

Post by johnj7b7r6 » Fri 20 Mar 2015 14:08

Just want to thank you both for your detailed answers, it's very remiss/late of me and thanks and apologies.

I don't know if you're still active on here but good luck to you anyway.

My situation is unchanged, it looks like I have some inflammatory issues which are systemic but no-one knows why - new things pop up all time, lately its' Beu's lines on all my toenails indicating a cessation of cell division as the body fights illness or infection.

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