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Posted 10/21/2015 3:25 PM (GMT 0)
Good news. I Finally have an appointment to see an LLMD.

In the interim, She has requested some testing. I have yet to see the DR but I noticed i has a elevated RF of 21. Along with an elevated IGA.

Is this usually seen in people with Lyme disease?
Posted 10/21/2015 3:38 PM (GMT 0)
A normal RF range is 1-20 where 20-80 signifies higher levels.
You are only at the low range of the high. Not scary high.
Remember that a positive test does not automatically mean you have rheumatoid arthritis. Your medical team will take into account the results of this test, the results of any other tests you’ve had, and your symptoms to reach a diagnosis.

Before I got worried, I would wait to see what the LLMD concludes.

Hang in there.

~Annette
Posted 10/21/2015 3:42 PM (GMT 0)
While we can't say that it's "usually seen in those with Lyme" we can say that many have an elevated test results like that though. It's due to Lyme being an inflammatory infection - although the inflammation is in between our cells, not just in our joints.

And congratulations on getting your appt with the LLMD!! When is it scheduled?
Posted 10/21/2015 4:57 PM (GMT 0)
Thanks peoples!

Traveler,

Its on Dec 9 in Plattsburgh NY...I'm not sure if we're allowed to post Doctors names on here but you probably know who i'm referring to.

Seeing as my neuro is very thorough, when i switched to her from my old doc she ordered more lab work. I've been having an elevated level of IGA serum level, as well as a slightly elevated Albumin level of 51. Electrophoreses doesnt suggest a monoclonal pattern.

However, I've had two Immunofixation serum tests done. The first test was performed in May of this year and the results were Faint Ill Defined band of IGG kappa and IGG Lambda. RE did the test at the end of Aug and it was only showing Faint IGG Kappa. An an IGA of 4.45. It was at this time the electrophoreses was ordered as well.

With my diagnosis of MS In January, and now all this, to me it seems to be more than a coincidence. Correct me if i'm wrong, but MS is contained to the CNS. Coincidentally I have several things going wrong all at the same time, or a misdiagnosis.

From an educational standpoint it would be nice to see or know if there are any Hematologists involved with the etiology of Multiple Sclerosis.

Through my journey Ive found quite the disconnect from one specialist to another. Neuro doesnt only knows basics about Blood, ID cares to know nothing about MS and so on and so on and so on. I think if there would be more of a collaborative effort, the right hand talking to the left hand, patients would be correctly diagnosed, or the cause to so many problems might have a solution.

I am very anxious to see the LLMD. Hopefully she will have better knowledge as to what is going on with myself.

Post Edited (Chris_1234) : 10/21/2015 11:06:43 AM (GMT-6)

Posted 10/21/2015 5:05 PM (GMT 0)
Well, considering they still don't know what causes MS, it's very possible that one reason could be Lyme disease, since we are talking about a grouping of symptoms only. And Lyme can most definitely present as only Neuro Lyme, especially if Bartonella is combined with it.

And yes, I do know who you are referring to in Plattsburgh, and no we don't allow LLMD's names to be posted unless they are very highly public, like Dr Horowitz or they are no longer in practice like Dr. Burrascano. We do this to help protect them. I look forward to the day when this is no longer necessary though!!!

Have you tried detoxing to see if that will make a difference in your symptom severity? It will take a while, as you have to lower your toxin load, which is slow to show signs of improvements.

Another thing to consider is that you have gene mutations that won't allow your body to detox like it needs to right now. Many who have long standing chronic Lyme disease have these genetic mutations, and once you know what you are dealing with, you can then find the 'work arounds' needed to get your body detoxing again.

I'm excited for you to go see the LLMD too!! How wonderful to have hope that you can heal from this!!!
Posted 10/21/2015 5:25 PM (GMT 0)
"Through my journey Ive found quite the disconnect from one specialist to another. Neuro doesnt only knows basics about Blood, ID cares to know nothing about MS and so on and so on and so on. I think if there would be more of a collaborative effort, the right hand talking to the left hand, patients would be correctly diagnosed, or the cause to so many problems might have a solution."

I know what you mean...one Dr. would talk about my throat, another about my weakness and nervous system issues, next one about my frozen shoulder...etc., but really, do I have 10 different things wrong with me...really? They really should be having a conference and looking at what could cause all these things.
Posted 10/21/2015 6:18 PM (GMT 0)
Ha, if only. Doctors have been operating this way for a long time. That's why we try to get people to go to a LLMD when they suspect Lyme and other tick-borne infections. They are the only ones trained to look at the whole body for symptoms and put them all together to determine just how likely it is that the person has these infections. Otherwise you will chase yourself silly trying to keep up with all the different specialists (not to mention the cost) trying to diagnose you with 10, 20, 30 or more different things! I know that was my experience anyway.
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