Today's Immunologist Appt

[Katybug]

Hey folks,

So here is today's update from the immunologist:

He researched more and decided it can't be proven that we are dealing with chronic Lyme, or, for that matter any specific disease because I don't test positive for any of the specific tests. BUT, we know, for sure, that my C4a levels are ridiculously high and that is caused by either autoimmune inflammatory disease or chronic Lyme. He wants me to see a rheumatologist as a second opinion, but, believes that the best course of action will be taking a class of drugs called anti-tumor necrosing factor drugs. They suppress a couple parts of the immune system, including the complement system (of which C4a is a part). These drugs are expensive ($1200-$1800 per shot or infusion) and since they can't find a specific diagnosis, he and the rheumy will have to make a case for the insurance company to pay for it, hence his request for the second opinion. These drugs are used in treatment of several autoimmune diseases like rheumatoid arthritis, lupus, psoriatic arthritis, etc. These are not the safest drugs in the world but he said he feels the benefits outway the risks in my case and thinks it is probably my best chance of ever feeling better because it specifically targets the one root cause we can prove is going wrong. The working theory is that reducing the C4a will significantly impact most/all of my symptoms in a positive way. After reading about C4a at length, I agree that this is probably the thing that needs to be targeted (if, and since, we can't find a more specific diagnosis.)

So, I can't get an appointment with the rheumy until March 26. I am continuing with the allergy shots and follow ups every two weeks with the immunologist until then. This is the most promising lead anyone has found so far, so I will keep you all updated.

Katie

[sue1234]

I'm glad you are possibly finding real answers! I'm glad lots of people lately are looking for root causes.

[DoozlyGirl]

Congratulations Katie! You have certainly found a thorough physician. Hoping the Rheumy will concur.

Keep us posted and best wishes,

Lyn

[Maiysa]

Hey Katybug,

Well it sounds like this doctor is trying to figure it out, but it sounds slightly confusing. But glad you are getting some help. I wanted to tell you that if you have to take any of those medications for your situation remember there is help out there. I have been dealing with this for a year now since my son has stage four Crohn's disease. It's sad but true, but he is doing so much better on the medication. He has tried a few. WE were actually paying $800 a month for his medication and that's after the insurance only paid half. It was a stressful mess, but now he has his medication covered but I had to fill out a lot of paperwork. Please let me know if you need some help. My son takes Humira and I have every phone number available. But so glad you are getting a second opinion.

Good health to you!

[Chaos]

Glad you seem to be getting some answers. That's really exciting. Please keep us updated as you get more info. It's very interesting!

[HopeSprings]

Katie- I hope this turns out to be a viable treatment that works! Keep us posted. Let us know what the Rheumy says.

[kmichaelson]

Good luck with this, Katy! how did your doctor ever know to look at your C4a levels--was it because of Lyme? My sister right now is going through all kinds of Lyme testing and I never realized how difficult it is to determine if someone has this disease or not!

[Katybug]

Thanks to you all for the well wishes!

Maiysa - Thanks...if the insurance becomes a problem, I will get in touch for your information. And, on my word, you have so many struggles of your own, I had no idea you are also caring for a seriously ill child. Crohn's is no joke. You are amazing!

dizzyblonde - Yes, Lyme is very hard to dx. The standard Lyme tests produce false negatives 25-30% of the time (not really good stats!) This immunologist retested my C4a because a Lyme specialist tested it back in 2008 and it was really high then also. Most "Lyme Literate Doctors" are aware these days that C4a is a helpful test in diagnosing Lyme especially when the other tests are not clear. The test is a simple blood test and it can be conducted by both Quest and LabCorp labs (it used to only be LabCorp but I was able to get it done by Quest this time around.) The results do take longer to come back than a regular test (about 2 1/2 weeks.) If she is struggling to find a Lyme Literate Doctor in her area, she could try an organization called ILADS, at www.ilads.org. I called them in 2008 to get the names of docs in my area that specialize in Lyme (they aren't easy to find because they usually don't advertise since most of them go against the "accepted" guidelines and treat patients with longer-term antibiotics if the situation warrants it than what is the standard recommendation.) You can also find information on their website regarding how C4a is related to acute and chronic Lyme. It is one of the best Lyme websites out there (in my opinion.) I hope she finds the right solution...it is sooo important to be treated with antibiotics as quickly as possible if she has it. The early stages are much easier to treat than late stage.

[rubytuesday]

Yea, Katybug. I know stuff products like that are scarey. One I take costs around $5,000 mo and the other (just for the product--not including pump, tubing, dressings, tapes, nursing, etc.) is around $8000. My ins. authorized the IV Ig but then when the immunologist wanted to change it to a product I can take in my home, they denied it. The letter mentioned something about needing to meet my pension system's criteria (letter was from our pharmacy benefit). I called pension place to request a copy of its 'criteria' to wage an appeal. Pension place told me they do not have 'criteria--we contract/negotiate with pharmacy and they have criteria--you have to call them' (this was supervisor). I called pharmacy--of course had to climb (nicely) to supervisor and explained it's letter (that he could/had to reference) and pointed out it cited 'criteria' twice, and that it was my right as the insured to have a copy to wage a timely appeal. He tried to say it was 'pension' system that had criteria when I told him pension says they pay you to administer the plan. Pharmacy supervisor says he's off next day but is sharing w/ his co-worker supers who cover him and is sending to accounting to get the criteria and if nobody gets it Fri (when he was off), he would definitely call me back on Monday and would get a satisfactory resolution. In the meantime, I 'MyCharted' immunologist and wrote reason cited and what was needed on her part for appeal. She drafted an appeal that afternoon and faxed it the next morning and nurse called me that afternoon that it was approved. I never did get any call back from pharmacy super. It is terrible what hoops these specialists have to jump through when the one's reviewing for insurance are seldom of equal specialty (altho you can request your appeal be reviewed by a board certified clinical immunologist). And they do it on their own time. I realize that history has proven that certain criteria be placed, one to prevent harm to the patient and secondly (but probably truth be known the primary reason) to contain costs. I am so glad they are figuring things out--something black and white that can help you feel better.

It's scarey being on this stuff--side effects (well--for one, my hair went from straight to curly with one of my meds). What's it doing to other body parts? And with the Ig you can get whatever the blood doner has brewing--including Hepatitis C. But they outweigh the risks against the benefits. I trust in my immunologist so have proceded with her plan. If/when I get side effects, will cross that bridge when I come to it. Wishing you better health with your plan. I hope the insurance isn't a barrier. As much as we get frustrated and aggravated by them, it is a blessing that we have health care coverage at all. Best wishes.

[Katybug]

Thanks, rubytuesday! I'm glad we have a plan at least...I figure I'll worry about the insurance when and if it becomes a problem. If you don't mind telling, which med made your hair curly? My mom has had this happen and we think it is either from her thyroid or form her thyroid meds.