First Visit To New Rheumatologist

10 Oct


Visit To New Rheum

If you never heard of a Rheum or Rheumatologist then you may want to be referred to one eventually. They can help get a diagnoses with fibromyalgia and CFS..etc but they are not very familiar with lyme where I live. I actually hated my first three rheums but this new one seems open-minded so far.

I was referred to the new rheum by my new PCP since he wanted me to see someone for my primary immunodeficiency (PIDD) plus my PCP didn’t know what to do for me. So the plan was to have him check my immune and see if he believed Lyme existed in California. He read my charts and saw my positive lyme test and he said “very interesting” as he was mumbling about how they did the lyme culture to catch the spiros in your blood. That was a good sign.

He suspects I have Lupus (SLE) but he doesn’t know for sure and he said there is no good testing but he mentioned giving me palquenil but with a weak immune and lyme that is a no go. I am already on a low-dose steroid. He examined me on the table and read up on all my history and records. He said “you are too complicated, you have too many things going on and all are different”. So he is referring me to a semi-retired rheum who is now an immunologist. He said he wasn’t familiar with the IVIG Gammagard I take and usually doesn’t prescribe it. He and the nurse were wondering how I get them at home with a nurse.

So although this sounds like a bad appointment, to me it was a good one since he was willing to listen and not belittle me or think I was there for drugs. He just said I was out of his league and I would be better off with a doctor with more experience in the immune field. I will be starting a 3 year study for IVIG infusions but I will be asking about GCMAF next visit.

Stay strong fellow warriors. There is light at the end of this lonely, dark tunnel.


5 Responses to “First Visit To New Rheumatologist”

  1. Miss Diagnoses October 10, 2014 at 2:30 am #

    Hiya! So sorry for all you are dealing with! Ugh! I started treating in early 2014 and had a question about Plaquenil; my LLMD uses it for the cyst form and wants to give it to me. I am concerned about some possible side effects, but I was wondering what your concern is about using it with Lyme. Is there anything I should watch out for? It sounds strange, but I will trust a patient before a doctor, because I have had doctors mess me up … Thanks and good luck.

    • 49er Bryan October 11, 2014 at 11:02 pm #

      Hi, the thought with plaquenil is that the higher dose steroid will suppress the immune system. With lyme we already have a confused immune system so the steroids can make it harder to heal or slow the progress if there is any. I think it also masks things in the body so it can be difficult to tell if you feel better from just the steroid or if you are actually feeling better over all. It’s not an absolute no go. If you have Lupus and Lyme then you have no other choice. If your immune is still pretty strong then I don’t see any problem with taking it for a while. My immune is so low I don’t want to get any lower and be in isolation or get pneumonia frequently. There are many side effects with plaquenil so that can double that symptom you may already have. Like for me I vomit/nausea every day so the plaquenil can increase nausea. And many lymies have IBS-D. The most common side effects are nausea and diarrhea, which often improve with time or by taking the medication with food. Less common side effects include skin rashes, changes in skin pigment (such as darkening or dark spots) or hair changes (bleaching or thinning of hair), and weakness. Good luck. I don’t think it will hurt to take it for a short treatment like a month or two if your immune is normal. I’m not a doctor but I do try to educate while at each doctor. Take care

  2. Brian October 11, 2014 at 10:34 am #

    So glad u are doing the gammagard study. It is an outrageously expensive drug so if u can get it for free then great! Doing my 6th infusion today (100ml weekly) and get my levels checked in two weeks. Still struggling, pushing hard to get better.

    -Love your clueless doctor image. Unfortunately inept doctors are the norm

    • 49er Bryan October 11, 2014 at 10:49 pm #

      Thanks Brian, I tried to find a copay card for gammagard IVIG but there was none only for sub-q but luckily Medicare sent me a study program packet to see if I qualified. Luckily I was born with no immune or else I wouldn’t have qualified with a secondary-immunodeficiency from lyme for example. This program will save me a huge amount of out-of-pocket money I was already paying.

      I hope your treatment is going well. Make sure you are taking your tylenol and try a couple different allergy meds like benadryl, claratin and one other anti-histamine and drink plenty of water before the sub-q. Let’s hope your immune is more stable. Good luck! Keep me updated. Hang in there. And that was the literal face my doctor had lol

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