Misdiagnosing ALS

[Gusflower]

Hello Natural. I do not find it coincidental that you had some infections in your body. I will really pray that this is going to be your solution, as well as mine. All the best from me and a great tomorrow.

 

[Polar]

FYI... https://www1.gotomeeting.com/register/700536217

 

[Natural]

Kelly, you tried abx for so long, what was the result of the Lyme treatments? Did your husband get weaker, lose muscle, and feel sick? Where there any good results? What finally made you quit the abx?

 

[Polar]

Leave the diag to the doctors , but.. A fast second/third opinion can't hurt.. Lyme is much harder/impossible to treat when left for a really long time..
I'm sure in my case if they found Lyme now the antibiotics (or some other infection) would kill me before Lyme would..

 

[10steps]

Any of you undergo a spinal tap for your lyme diagnosis? We were told that was really the only way to determine lymes at this point. False positives are not uncommon apparently hence doing at least 2 tests and then repeating those...then spinal tap to leave no stone unturned.

 

[Gusflower]

Spinal tap can be useless if borrelia have been in your body for a long time.

 

[Polar]

Let the doctors decide.. Self diagnosis is not possible..

 

[kelly]

My husband was on so many antibiotics that his liver enzymes were really elevated. Also, he always felt sick (which they called a herx). I really think it was a combination of all the meds he was on..and not a herx. Andrews decline is why we stopped.

 

[Gusflower]

So I ve gone on Doxyferm 200mg a day. I cry every day because of the regret in not going to the doctor when the tick bit me. I had no idea and I told nobody. My Bulbar ALS is my own fault. It s a horrible thing to carry.

 

[Alyoop]

Gusflower.
I know people have asked this before but, from your posts, you do not have bulbar ALS, in fact you have no evidence of it and no Diagnosis. How come you keep self diagnosisng yourself with it? I really dont think its fair or honest. It is a slap in the face to people really battling this horrible illness. You are beating yourself up emotionally for no reason. The burden you are carrying is self driven. Try and get yourself some psychological help before you drive yourself crazy.

Aly

 

[Gusflower]

I know that people are not taking me seriously because of what I've posted. I do not want to have ALS, I want to have Borrelia, but I find no documented cases which involved what I am experiencing and who survived.

My story is thus a story of a development from Lyme to what this is. I can not swallow properly, every time I swallow there is a click and all foods get stuck, fluids is OK. I can not clear my throat properly anymore. I am fatigued since 7½ years. I have a upper lip without a vermillion border and with muscle tone having come half the way off my lip.

If I could turn back time I would have gone to the doctor when the tick bit me. I just didn't take it seriously enough. I had no clue that ticks were dangerous back then and then I forgot about the tick bite and associated with other thing, and yes the burden I am carrying is because of myself.

But anyhow, Lyme does not lead to ALS.
ALS and Borrelia have no documented connection.

 

[Katie C]

For the record... in bulbar als liquids are more difficult to deal with than soft solids. Yet another indication you do not have bulbar als.

 

[Polar]

You're going to drive yourself insane worrying about whether you do or don't have ALS .. Push your Doctors for an answer.. That's their job.

 

[Gusflower]

I am. My breathing. It is where it started. I have phone time today. What should I request? Breathing test, sleep test? Anyhow it's not so weird if they didn't find anything, I mean respiratory onset is the least common of the ALS diagnosis.

 

[notme]

Per the ALS clinic I talked to today, they can do tests for bulbar ALS. Have they done them on you, Gusflower?

I'm afraid all the Lyme disease and months of meds is going to start making people sick. Prolonged antibiotics wreak havoc on the immune system. People with diagnosed ALS need to keep as otherwise healthy as they possibly can. I think that any 'professional' that feeds on their fears and cons them into expensive treatments that put them further at risk should be taken out and shot.

It is highly doubtful that a competent ALS specialist is going to misdiagnose ALS. It's not even diagnosed until other possibilities are ruled out.

What are these so-called lyme specialists? It seems as if it's the new 'fad' disease.

I'm sure the occasional person is mis-diagnosed. I find it hard to believe that any neuro would give an ALS diagnosis to ANYONE without being damn sure of their findings.