sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
**6/15/11 Please scroll down a few posts to today's update**
Has anyone seen an immunologist? Were they able to help you in any way?
I would like to make sure that I don't have some sort of immune dysfunction that might be slowing my recovery. I have had low IgG and low IgA on tests before so I'd like to see what's going on now.
The doctor that i saw last week was very nice, seemed interested in trying to help. My only concern is that he does not know anything about Lyme, coinfections, and their impact on the immune system.
I would like to send him some information but I don't know what would be helpful. What do you think? Do you know of any references on Lyme and the immune system?
Thanks!
[ 06-15-2011, 07:39 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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posted
My doctor, a well respected LLMD, lists hemotology among his many specialties. When I asked him how we could measure my level of improvement, he pointed out that my immune function was still very low. He uses a CD57 test to measure it. He said that 60 or above is normal. Mine is at 22.
But my number of lyme bands is going down, speech is very much better so I know the abx are working. Herxing is miserable, though.
I think we all have poor immune function. How to measure it is the question. CD57 is still considered an experimental test. But it does seem to be tracking my improvement.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Even if they do find something...what can they do about it?
Posts: 844 | From CA | Registered: Apr 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
If one has an immune deficiency, it can sometimes be treated with IvIg. This would probably also help with their Lyme/coinfection treatment as well.
I really wish I could find a Lyme-Literate Immunologist...I have some oddities on my Lymphocyte Subset counts that I'd love to understand better, but nobody seems able to answer my questions. My LLND has tried to reach out to the medical community to find answers for me, but he only gets "I don't know" in response. He has even been contacted by the CDC about my strange T-Cell counts...they requested more info on my medical situation. I guess it is unusual to have low T-Cells (and sometimes I also have low B-Cells) and not have HIV/AIDS.
He has tried to talk me in to trying IvIg, but my Ig levels are normal (IgM, IgE, total IgG) or elevated (IgG-2, total IgA), not low...
So yes, I think it would be helpful to see an Immunologist who had a clue about these darn tick-borne infections.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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My son is a patient of a Lyme-literate Immunologist. If anyone wants the doctor's contact information, then please pm me.
Posts: 9020 | From Illinois | Registered: May 2006
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posted
We took our son to a non-LL immunologist on the advice of our LLMD. He was dealing with low IGG,IGM and IGA. The immunologist knew very little about Lyme & Cos., so I brought in all kinds of research showing the persistance of borellia, etc.
At the next visit the immunologists told us that they had spoken to their ID dept. and were told that what my son is dealing with is definitely not Lyme and that they didnt' "believe in" chronic Lyme, BUT, they would be willing to put him on IVIG in an effort to help a very sick young man.
They suggested that we use Viva Globin which is sub-q immunoglobulins. He was on it for a year with little change in his symptoms (seizures, fatigue and psychosis).
His IGG levels, however, came up into the normal range, but his IGA and IGM levels, while raised, were still below normal. After a year, it was decided to stop the Viva Globin.
A year later, when he was tested again, his levels were all back down to where they had been originally. He had been unable to hold on to the gains.
For the last 6 months he has been seeing a nutritionist who has put him on an anti-glutamate diet and uses supplements to help deal with a mutated gene in his methylation pathway.
When his IGG levels were tested a month ago, they were back up to where they had been after a year on Viva Globin! The nutritionist has now given him Del-Immune V and Arabinogalactan to try to bring up his IGA and IGM levels. We are currently awaiting the results of the most recent testing.
I know some people have been helped by IVIG, but for my son the improvement was minimal.
Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all. I'm hoping this doc can help. It would be so nice to have someone local.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
*Update 6/15/11*
Some of my labs have come back: IgA and IgG levels are both very low. T & B cells were within normal range.
The doctor is suggesting "humoral immunity" testing now. I'm supposed to get a baseline lab draw, then 2 vaccines( Hib and pneumonia), then wait 4wks and repeat the labs to see if I mount an appropriate immune response. Is this pretty routine?
I'm scheduled to get the vaccines on monday. Wondering if this is OK to do while my body is burdened with Lyme and Coinfections?
[ 06-15-2011, 08:05 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
up please
Posts: 5237 | From here | Registered: Nov 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My sister's ILADS doc in Florida did a measure of her immune system using the pneumonia vaccine. She did not do the HIB. I thought it was a big no-no but he has done it with other patients. It gave him an indicator of how weak her immune system was.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I sure wouldn't do it. Vaccines are not the normal way our immune systems are challenged. The vast majority of our immune tissue is in our digestive and respiratory tract. Vaccines bypass both these systems.
Just my opinion.
Posts: 707 | From Colorado | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Errrgh! Vaccines? I know they test this way sometimes, but it doesn't sound good to me. Did you ask your LLMD?
I still think that you should see the LL neuro that we spoke about instead. I know that that may seem impractical right now, since he is so far away and you were just in that area recently. Do ask your LLMD first. some Lyme patients do do one of these vaccines as a test, but . . .
Think about whether you couldn't see the neuro instead, even if you had to wait a bit. But if you could only do ONE of the vaccines maybe, maybe.
Wait a sec, isn't this guy a neuro? What about a punch skin biopsy?? I would bet you anything that you DO have peripheral neuropathy. Ask about getting that test for that dx. You would also probably need EMG"s, but that's not too hard. Try that route, if you can.
Posts: 3792 | From around | Registered: Mar 2008
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Have read too many stories on this board of people who have had vaccines and it kick starts their symptoms. Some have said they were never the same after getting a vaccine. Wouldn't go this route.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I haven't been able to speak with my LLMD yet. The nurse was supposed to call me back today but that didn't happen.
My LLMD is aware that I'm seeing this local immunologist. He thinks I need IVIG (for immune support and neuropathy treatment).
I had started seeing a neurologist but I don't know what's going on with him. He doesn't seem interested in helping me. He did some initial tests and told me I needed a spinal tap. It's been over a month and I still haven't received the order, I've called multiple times. My LLMD is not pleased at all. He's supposed to be calling to get my reports. Sounds like I'm going to be needing a new neuro soon.
This local immunologist is not yet Lyme literate but he is willing to work with my LLMD to help me. I greatly appreciate that. If he is willing to give me IVIG then I may not need to pursue further neuro testing.
My neuropathy is bad enough that any dummy could verify it. If you hold ice on my toes I will not know it unless I see it. My feet do not sense cold. That's just one example. It's bad.
So, back to the vaccines, I don't really know what to do. I think that they are safe and good for normal people. But Lyme is such a big burden on the body, I don't want to add more stress.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I am very interested in this topic, but have no advice or further information.
All I know Sammy is that I'd look more into these vaccines before getting them. If you're an older person, the pneumonia vaccine could be justifiable. The Hib, I don't know.
If you are relatively healthy perhaps the vaccines wouldn't affect you. But if you're walking around with a suppressed immune system, that's another story.
What does your LLMD think? Your primary? Is there a way to do just the pneumonia vaccine first and see what the results are?
If you're not sure/have questions on this, I personally would hold off on getting these vaccines until you could make a better-informed decision.
From what I know (very little) IVIG is tough to go through (but what treatment isn't?) and it's hard to get insurance to pay for it, unless you have certain conditions.
Good luck to you.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Vaccines always mess with your immune system. It's just that sometimes a healthy person cab handle it. Just because they can handle it doesn't mean it's good though. Who knows if past vaccines didn't contribute to where we are now with immune systems that can't handle infections.
Posts: 707 | From Colorado | Registered: Jul 2010
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Immunologist visit is a good thing to do. They can check your immunity with difteria toxin and candida on your arms.Not all vaccines have bad stuff on them ask what to they have as disolvent on vaccines.The immunologist give you vaccine that contains only protein of toxin or bacteria.
Posts: 482 | From Nebraska | Registered: Feb 2010
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