Conflicting diagnoses

[Inventor]

At the Oslo airport waiting for flight back home from the Lyme clinic. Had the blood tests taken, and a consultation with a doctor. Based on the borderline positive Lyme IgG and the slightly elevated proteins in the previous CSF test, she told she'd be surprised if their tests wouldn't suggest an antibiotics protocol will be due. And that she's seen Lyme cases with quite similar clinical picture, that have been succesfully cured, but even though I had Lyme, there's of course no guarantee it would be the cause of my symptoms.

Results due in 3 weeks.

 

[scotslassie]

Good luck to you and congrats on the new baby.

 

[Inventor]

Got the results from Norway. No indications of Lyme in the blood this time, but based on the clinical symptoms, I'm on antibiotics (doxycycline + azithromycin) for 8 weeks to test if there's any response.

Also got the results from my local hospital: normal MRI, one swollen lymph node in my left armpit at CT scan but otherwise normal. No explanation found for the symptoms - the only thing they're going to do from now on is to wait for region spread - next evaluation in December.

 

[Waiting]

Just wondering if you have had a muscle biopsy? After my husband's EMG the Dr. was concerned that he has ALS but he didn't want to jump to a diagnosed until he did he did a muscle biopsy to try to rule out some other things. The biopsy revealed Inclusion Body Myositis (IBM). It is a rare form of myopathy, a muscle problem rather than neuron. It is progressive and eventually debilitating and no cure, but not fatal in most cases. He has loss of strength in his arms and hands and muscle atrophy. His legs also feel somewhat weaker as well. I would recommend a muscle biopsy to anyone who is being considered for ALS. Lot's of luck to you.

 

[Inventor]

No muscle biopsy done, but that's apparently one more thing to consider. It appears our generally wonderful public health care system has now more or less done all it can, so I'm thinking if I should pay a visit to a private neuro for a second opinion. Still having some hope regarding the Lyme possibility as well - living in a high-risk area and having removed several ticks from my skin each year. And that stiff, cracking neck & sensory issues in shoulder blades would possibly fit neuroborreliosis better than ALS.

We'll see - thanks for the wishes!

 

[Grateful]

Hi

Please make me happy and make sure you have the relevant blood tests regularly to ensure that you are not inadvertently doing yourself serious damage with the antibiotics. Obviously the clinic in Norway isn't going to be doing them, but your doctors in Finland should.

And yes, just in case you are wondering, I have regular blood tests because I take azithromycin permanently and thus need to be monitored...

 

[Inventor]

Hi

Please make me happy and make sure you have the relevant blood tests regularly to ensure that you are not inadvertently doing yourself serious damage with the antibiotics. Obviously the clinic in Norway isn't going to be doing them, but your doctors in Finland should.

And yes, just in case you are wondering, I have regular blood tests because I take azithromycin permanently and thus need to be monitored...

Thanks - yes, I got the papers from Norway specifying which blood tests to do every 3-4 weeks here, and they're monitoring the results over there.

 

[Inventor]

Got a letter from the local hospital, inviting me to a lymph node biopsy next Wednesday, based on the CT scan. Don't know what they wish to check.

 

[Grateful]

Well, you mentioned that the CT scan showed one swollen lymph node so I would imagine that they want to biopsy it to see what it is.

There are forms of cancer which present first with neurological symptoms; your doctors are following up the possibilities which is exactly what you want them to do. It would be a pity to launch into a long program of antibiotics if what you really have is paraneoplastic syndrome; treating a cancer is usually a lot more effective than not treating it. I shall be keeping my fingers crossed for you!

 

[Rami]

Interesting thing, some conditions that are considered paraneoplastic, (ie there is a toxic tumour spewing havoc, lurking somewhere in your body) have a slightly less evil twin, who causes the havoc with the tumour.

 

[Rami]

Meant to say without the tumour

 

[notme]

Personally, I wouldn't touch the antibiotics til you find out what's what with the node. But that's just me. Antibiotics are not as harmless as so many believe, yet doctors hand them out like candy it seems.

Try not to panic. That enlarged gland can also be something easily treated as well.

Certainly I would want to know!

 

[Inventor]

I'm glad they decided to follow that lead even if it led nowhere - the previous letter I got just a couple of days before led me to think they had run out of ideas and given up. My right hand has been deteriorating fast during the last couple of months, which I have found frustrating: finally completely lost the ability to button my shirt, now typing with just one finger and have difficulties even with finger food, as the hands don't want to rise high enough. It's hard to stay patient when you are aware of the damage taking place every day.

 

[notme]

Oh, I meant not panic regarding the node. I'd certainly want answers regarding the atrophy, too!

 

[Inventor]

notme: you posted while I was making my previous comment, which I meant as a general recognition of the surgeons deciding to check that out in spite of the sceptic tone of the letter from the neurologists.

Regarding the antibiotics, I know I would not have a peace of mind regarding the Lyme possibility without this experiment. In my personal balance sheet, taking into account this psychological aspect, the benefits outweigh the potential drawbacks even if there were no spirochetes in my central nervous system (especially since until yesterday I believed nothing else is going to be done anymore by the doctors here). We'll see about that in a few weeks.