posted
I had seen an immunologist prior to finding out I have Lyme. We discovered that I had low IgG and low IgA. She wanted e to get the pnuemovax and that was pretty much all that was recommended.
I got dx with Lyme and cos.. My second LLMD checked them again and my subclasses. They were even lower. I was dx by my LLMD with CVID.
I went back to the allergist/ immunologist to have more allergy testing done and I brought her my current labs. She said that I should have my IgG checked again in month, because she wanted to see if they had gone up after being treated for a small bowel overgrowth and had been taking colostrum to help boost levels.
I had them drawn and went back to see her. She had said at the last visit if they were still low she wanted me to start IVIG. We discussed it and I left with the agreement that if I was still low, the level had not come in yet we would start until I was in the 900s. The next day she called and told me she wasn't comfortable treating me and that she wanted me to see an Infectious disease md about my Lyme dx!
I am so upset and humiliated. It took me 4 years to get a dx And I have been sick most of my life. I obviously told her NO.
I think it was the port and iv abx that turned her on me. She even told me I shouldn't have a port because the risk of infection. Yet she won't treat my low IgG so I don't get anymore infections.
She even said something like IVIG is for people with chronic infections! hello!
Posts: 253 | From CA | Registered: Jun 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
So next time don't mention a lyme diagnosis?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm sorry she treated you so poorly. It sounds like you need a doctor with more experience in treating patients with primary immune deficiencies.
Here are 2 websites with info that may be helpful for you. You can also use them to request an expert physician that is located in your area.
You already have your diagnosis so at least when you find your good new doctor you will be that much closer to starting treatment and feeling better Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
So which doctor is saying no to IVIG?
What exactly are your levels? Have you had IVIG before?
I cannot imagine a doctor denying IVIG to someone with CVID.
To add: is your LLD agreeing that you should get IVIG? But is unable to at his clinic? Could refer you elsewhere?
I get my IVIG at an oncologist's office/clinic. She regularly checks my levels.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
posted
Please stay away from Infectious Disease doctors unless they are Lyme-literate. they have no clue about this horrible disease or its complex treatment.
My son is seeing a Lyme-literate Immunologist in CT and is receiving IVIG treatments there every two months for two days each. Thank God our insurance covers it, because it is very expensive!
I will pm you with the doctor's contact information. Maybe they can refer you to someone.
FYI - IVIG is not a treatment for Lyme, but to help the immune system when specific subclasses are low, etc.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Thank you all. I really didn't think she cared about the Lyme DX.
I was so wrong. My IgG level went from 635 to 675 by taking colostrum. She still wanted to give me the IVIG until she found out I was getting IV abx. She said it should be in the 900s.
My LLMD said IVIG would help but she feels it would be very hard to get approved through insurance by her office.
The Immunologist said it is no problem getting it approved for CVID and they give it all the time. Not to me!
Oh well. I am afraid to go to anymore doctors. I think I will just stick to my LLMD.She has other methods to raise my IgG that we can try along with the colostrum.
If it drops significantly or I cant handle the abx maybe I will go to another immunologist.
I worked in an oncology office and one of those docs might be willing to do it?
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
hey-I didn't get your email. Which addy did you send it to?
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Did you go through with the pneumovax challenge? How did your other vaccine titers look? That is pretty important in diagnosing any primary immune deficiencies. Make sure your doctors have or will check that.
I'm surprised she diagnosed you with CVID with a total IgG of 675? Usually they want it to be 2 standard deviations below the normal adult range. Typical diagnosis is < 400. I could be totally wrong though because I am not a doctor, that's why you need a good one!
You need a good, experience immunologist (not an allergist who primarily sees allergy patients) to fully evaluate you. Test all your subclasses. You may have a deficiency there that would qualify for treatment. You also need the vaccine challenges so that insurance will fully cover your IVIG for life.
Take care. I hope I didn't bother you too much. I like to be well informed so that's why I shared what I did.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
No bother I appreciate any advice. I think it was because my IgG subclass 1 was also low. I will look up the number and my IgA and Subclasses were also low. She also mentioned my T cells being low, I think she was looking at my CD 57 and didn't know what it was just that it was low.
My vaccine titer for tetanus was low and she said something about that indicating I was unable to make protein based antibodies?
The pnuemo challenge would have shown a problem with making carb based antibodies? Hard for me to remember.
I did not want to get anymore vaccines so I opted not to.
I just have so much stuff going on and major inflammation. She didn't really have a problem with it either because the tetanus titer had been done.
I know they are not that low so I think I am just humiliated most of all. I also know so many patients (not with Lyme) that really improve when starting IVIG and I was thinking this might be my ticket back to work.
I will read up on it more. My brain sucks so bad right now. I actually am kind of smart(LOL) but these days cant even remember names.
Posts: 253 | From CA | Registered: Jun 2011
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Don't be humiliated Spindleshanks.
I think that we all have probably been through a similar experience. Maybe different kind of specialist but same kind of poor treatment. It doesn't feel good to be treated that way.
That's why we cherish our LLMD's.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Could you pm me with the info regarding Lyme literate CT immune oriented physician. Thanks so much!
Posts: 11 | From New Jersey | Registered: Jan 2012
| IP: Logged |
posted
Still wondering if anyone has been treated with IVIG with a number as high as mine. Even the first 635 isn't that low according to that article.
If not I am wondering why she even mentioned it in the first place. So confused!
Posts: 253 | From CA | Registered: Jun 2011
| IP: Logged |
posted
Ladyjane - PM sent with information you requested.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Spindleshanks, the immunologist must have mentioned it initially because she felt like you could benefit from the treatments.
Even if you do not fit the classic CVID diagnosis, you may still have another type of immune deficiency.
It might be worth getting a complete work-up by an immunologist that specializes in caring for patients with primary immune disorders. They will know best what to test for and how to treat you if necessary. They shouldn't be so wishy washy like this doctor was with you.
Since you asked specifically about numbers, I will tell you that my IgG was in the low 400 range and IgA was in the low teens (both tested multiple times before diagnosis) before I started IVIG. Now that I have been on IVIG, the highest my IgG trough level has been was 740 (still low but "normal" now).
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Very good advice. Thank you. Do they help you feel better?
Posts: 253 | From CA | Registered: Jun 2011
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - (and others?) - do you mind sharing the dose and frequency and maybe even the brand of your IVIG?
Have been on it how long?
IIRC my IGG "baseline" was about 570. (One time dropped to low 500's). IGA normal but low end. An IGA subclass subnormal. I think 2 IGG subclasses subnormal.
posted
susank - My teenage son receives IVIG treatments for 2 days every two months. He started in June of 2011. The Immunologist says it will take about a year to see improvement as my son has been ill for a very long time (11 years).
Sorry, I can't remember the dosage (it is based on a person's weight). The infusions last most of the day (6 hrs.?) for two consecutive days. My son can only tolerate slow infusions, otherwise he gets the migraine headache side-effect.
I think the brand used is Gammanex which is the best one.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm currently on Gammagard every 4 wks. That is what brought my last IgG trough level up to 740. Initial dose is based on weight (400mg/kg) then increased based on clinical response.
Was told the goal was get the trough level up into the low normal range but also has to be high enough to keep us from getting new infections. There is no exact right number that is best for everyone. The doctor has to use their clinical judgement based on your response.
I wish my doctor would be a little more generous and let me try a higher dose. I am taking my own advice from above and seeking a second opinion from an expert to make sure that I am getting the best treatment available.
I want to get well. I am struggling to fight off my multitude of infections. I feel like I need a higher dose of IVIG. I feel better for a few days after my infusions and feel like death towards the end of the month. Something needs to change.
I edited my original post from this AM because I remembered that we are not supposed to post specific doses here on LN. I don't want to cause more work and stress for the moderators. Sorry. I'll PM you if you'd like susank and Spindleshanks.
[ 01-17-2012, 02:01 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic