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Immune system (Read 7446 times)
starfish
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Immune system
04/08/11 at 13:21:40
 
For years now my doctors here in town would refer to my "damaged" or "compromised" immune system. The last time I saw Dr. Akin and mentioned it, he seemed surprised and said he didn't think that was the case. He suggested given tests they should run. I came home and went through my blood work records and some tests had indeed been run and were considered low. So my question, do you have  any immune deficiencies?   And also, why isn't my spell check working?
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Lisa
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Re: Immune system
Reply #1 - 04/08/11 at 15:05:40
 
Gee whiz!  Another hard question!!  This time I'm in over my head!  JILLYYYYYYYY WHERE ARE YOU?????     Where is that immunologist when you need her???!!   (poor thing, she's got her hands full!)

Star, I can't answer this for you, sorry!   Perhaps Heather or one of the others knows how to answer this for you.  

As to the Spell check??  I've never bothered trying it!!   Pull your crank out and give it a few good turns - perhaps that will help! hahaha!  (I'm in a silly mood tonight -  Roll Eyes Roll Eyes )

Lisa
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Kristi
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Re: Immune system
Reply #2 - 04/08/11 at 19:26:34
 
Starfish,

I'm still in the process of trying to get a diagnosis, but one allergist decided to test my immune system and my IgG total and IgG subclass 1 were low. When I looked up what that might mean, it mentioned frequent sinus and upper respiratory infections. I definitely have those! Do you know which parts of your immune system are deficient? The dr. said they wouldn't treat my deficiency unless I had severe infections. They treat with IVIG which is a blood product from donors and it can cause serious allergic reactions which I don't need!!
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Josie
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Re: Immune system
Reply #3 - 04/09/11 at 00:17:10
 
Hi Kristi ,

Regards IVG . I have given this infusion many times . I ahve never had a patient have an anaphylaxis . I know us lot are good at breaking the rules , i just wanted to reassure you . My exeprience was the nurses who give this drug are very aware of its possibilities and are keeping a very close eye . My experience was mainly in neurology as its used most widely there . Do you have any nerve symptoms ?  . I have had a neuro work up .

Hi Star ,

Regards your low IGG , I would send your results to Dr Akin and let him decide what , if any , action is needed . I know your doc is wanting to wait until you have a serious infection . I see his logic but it seems a bit closing the gate after the horse has bolted . I am constantly fighting infection , my GP is over the moon we have found antibiotics which I don't react to . I do wander if this is at the base of kristies allergist holding back Wink

many hugs

Jose
many hugs
Jose
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Lisa
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Re: Immune system
Reply #4 - 04/09/11 at 01:24:27
 
Star,

Josie's right.  I've heard of this being suggested for some of us autoimmuners with masto as a valid means of trying to improve our situations.  

Remember, there are a LOT of medications out there which will also say that one of the possible side effects are anaphylaxis, the fungal meds are one of them.  This doesn't mean you'll react to it.  I do know of one man who does not have mastocytosis who ended up reacting to the IVIG treatments, but I think that this is really a situation where until you do it, you won't know if it will help you or not or if you will have a reaction to or not.  And besides, this is done in hospital and under supervision and so if you react, you're in the right place to do so.  

You see, Star, you're in one of those "between a rock and a hard place" situations.  Any kind of infection triggers masto.  So, you really need to seek for treatments which will reduce your infections and vulnerability to them.  You need to reduce known triggers and if you know that you have this tendency towards these infections, then you need to weigh the chances of what is happening here.  With the IVIG treatments, you don't know if they will trigger you.  Yet, you DO know that the infections will.  So by not giving the IVIG at least one chance, you are purposely putting yourself into harms way.  It's like standing on a freeway during rush hour - one of those cars is going to hit you, you just don't know which one.  By trying the IVIG in hospital under supervision with doctors ready to go very slowly and to intervene at the first sign of trouble, you really are not taking any real risks and it will give you a chance to see if it works.  And it may just work for you!

Nancy Gould, who is well known amongst masto patients as a lay researcher, had spoken with one of the masto authorities about my case and this was suggested as treatment for me.  Have I done it yet?  No!  Unfortunately I have not been able to find an immunologist who WANTS me, and so I can't get the support I need to try this option.  I'd like to, for I'm proven autoimmune and allergic to my own serum.  I had a positive result on an ASST skin test and we know that I've got something IgG going on with me, but without an immunologist to investigate this, I can't get anywhere!

So, if one of your doctors is willing to try this and thinks that you will benefit from it, why not?!  If it will reduce your infections then it will reduce your triggering from those infections and thus give you loads of improvement!!!!

So, you may want to rethink this situation.  I agree with Josie, speak with Dr. Akin about this option and see what his opinion is of it - don't forget to send him a copy of those test results for the immune markers so that he can see what you're talking about.  Remember, he's your doctor now and can directly help you and recommend treatment options.   Also, KEEP HIM UPDATED!   He wants to follow you with whatever goes on with your local doctors and he can only do this if you keep him on top of your case and how you are responding to treatment.

Lisa
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Starflower
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Re: Immune system
Reply #5 - 04/09/11 at 05:57:17
 
Adding my two cents... Wink

In the world of alternative medicine, there is so much talk about having a "low" immune system or needing to "boost" your immune system.  Most of it is pure BS used to sell expensive supplements.

That being said... it IS possible to have a deficiency in one or more types of immunoglobulins (total IgA, total IgG, IgG subtypes, etc...) that makes you susceptible to infections and autoimmune disorders.  In my case, I have a below-average level of natural killer cells.  I had a lot of infections as a child and many, many, rounds of antibiotics, which I'm sure did no favors to my intestines!  My overall immune system, however is now VERY strong because of the autoimmune activity.  My immune system is so active that it's attacking things it's not supposed to be attacking.  These days I rarely get infections.

Just like an individual can have SM plus IgE allergies, it's also possible to have SM plus an IgG deficiency, SM plus an autoimmune disorder, etc... this is called co-morbidity.  The bad thing about having a mast cell disorder plus an immune deficiency is that infections trigger antibody production, which triggers complement activation.  Certain types of complement are known degranulators.  

So... to make a long story short... I agree with Lisa about trying the IVIG.  The potential benefits definitely outweigh the risks.  The only downside is that if it works you'll have to keep repeating it... and it's pretty expensive.  It's usually used to treat things like drug-induced lupus and acute infections where you only need to do the treatment once or twice.

Heather    
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Kristi
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Re: Immune system
Reply #6 - 04/10/11 at 18:32:20
 
Thanks for your input, Ladies. I feel like I kind of took over Star's thread...so I'm sorry for that.  Wink

I am not yet a patient of Dr. Akin's but I need to get an appt. asap. I've only gotten scattered input and tests run by three different allergists and I need someone to tie it all together.

Regarding the IVIG, it's funny. I have actually had several infusions about 10 years ago while pregnant with my first son. It was found after several miscarriages and an ectopic pregnancy that I had elevated Anti-Phospholipid Antibodies which have something to do with blood clotting. I took heparin injections and had IVIG treatments with my first successful pregnancy. I only used the heparin with my other two kiddos. I didn't react to the IVIG then, but I wasn't nearly as sensitive at that point.

I'm not against using IVIG again if it will help with my sinus and especially ear inflammation and resulting infections. I am really scared of the next infection because I don't know what antibiotic I can try. I recently had anaphlaxis after taking augmentin and I've had the same reaction to bactrim.

I am really curious if there is an autoimmune component to all of this too. Would Dr. Akin check for this or do I need to see a rheumatologist or immunologist locally? I feel like my immune system is really whacked out and has turned on me and is attacking me.

Thanks again for the helpful input.

Kristi
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Starflower
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Re: Immune system
Reply #7 - 04/11/11 at 00:15:24
 
Hi Kristi,

Antiphospholipid Syndrome (APS) is an autoimmune disorder... so there's no need to go looking.  You already have one.  By activating complement, autoimmune disorders increase mast cell activity.  

I wouldn't bother with a rheumatologist, but it's a great idea to seek an appointment Dr. Akin.

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
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Josie
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Re: Immune system
Reply #8 - 04/11/11 at 06:19:44
 
Hi Kristi ,

Regards the antibiotics - augmentin is peniclillin with potassium clavulanate, .

Bactrim is trimethroprim , a typical agent for urine tract infections with an added sulphur element . The sulphur element is an addition to increase its potency . These antibiotics are known as sulphonmides

I think the classes of  antibiotics to avoid are :-

penicillins
sulphanomides
trimethroprim alone
penicillins with added culvanic acid

There is a 10 % cross over between penicllins and ceflosporins   ( cefuroxime , ceftriaxone ). With anaphylaxis to co amoxiclav , I would be concerned about cef drugs .

With anaphylaxis to both I think  i would / you should ,  avoid penicillin completely . There are newer antibiotics which are penicillin , sulphur and extra acid free .

I think  , Macrolides :- are used in peniccilin allergic patients . I also think there is No conncetion to sulphr based drugs or trimethroprim

Erythromycin

Clarthromycin

Azithromycin
Clindomycin -

This is the information on them from the BNF ( british national formulary used by all doctors in the UK

Erythromycin has an antibacterial spectrum that is similar but not identical to that of penicillin; it is thus an alternative in penicillin-allergic patients.

Indications for erythromycin include respiratory infections, whooping cough, legionnaires’ disease, and campylobacter enteritis. It is active against many penicillin-resistant staphylococci but some are now also resistant to erythromycin; it has poor activity against Haemophilus influenzae. Erythromycin is also active against chlamydia and mycoplasmas.

Erythromycin causes nausea, vomiting, and diarrhoea in some patients; in mild to moderate infections this can be avoided by giving a lower dose (250 mg 4 times daily) but if a more serious infection, such as Legionella pneumonia, is suspected higher doses are needed.

Azithromycin is a macrolide with slightly less activity than erythromycin against Gram-positive bacteria but enhanced activity against some Gram-negative organisms including H. influenzae. Plasma concentrations are very low but tissue concentrations are much higher. It has a long tissue half-life and once daily dosage is recommended. Azithromycin is also used in the treatment of trachoma [unlicensed indication] (section 11.3.1).

Clarithromycin is an erythromycin derivative with slightly greater activity than the parent compound. Tissue concentrations are higher than with erythromycin. It is given twice daily.

For the role of erythromycin, azithromycin, and clarithromycin in the treatment of Lyme disease, see section 5.1.1.3

Spiramycin is also a macrolide (section 5.4.7).
Oral infections


Clarithromycin or erythromycin is an alternative for oral infections in penicillin-allergic patients or where a beta-lactamase producing organism is involved. However, many organisms are now resistant to macrolides or rapidly develop resistance; their use should therefore be limited to short courses. Metronidazole (section 5.1.11) may be preferred as an alternative to a penicillin.
Cautions


Macrolides should be used with caution in patients with a predisposition to QT interval prolongation (including electrolyte disturbances and concomitant use of drugs that prolong the QT interval).
Side-effects


Nausea, vomiting, abdominal discomfort, and diarrhoea are the most common side-effects of the macrolides, but they are mild and less frequent with azithromycin and clarithromycin than with erythromycin
.
Hepatotoxicity (including cholestatic jaundice) and rash occur less frequently. Other side-effects reported rarely or very rarely include pancreatitis, antibiotic-associated colitis, QT interval prolongation, arrhythmias, generally reversible hearing loss (sometimes with tinnitus) after large doses, Stevens-Johnson syndrome, and toxic epidermal necrolysis. Intravenous infusion may cause local tenderness and phlebitis.

The absolute best professional to discuss this with is a microbiologist.

What symptoms did you have with the anaphylaxis ?

Steven johnson syndrome is miserable . Did you have the rash for ages ?

Infection its in itself enough to make us react and get us into a snowball of reactions . I see exactly where your at with this .

Have you / do you react to sulphites  , as they are used as preservatives in IV drugs and are used to soften corn and bleach the flour ( maize startch ) so this may be contributing to your reactivity also gelatine , the sulphites are used to soften the animal hide . Since removing capsules ( gelatine ) and corn flour filler , sometimes pre gelatinised , from my meds I have been less reactive . Especially in my bowel . Gelatine will make me wheeze , especially if its on an empty stomach ( as is advised with many antibiotics )

I tolerate , kiddie antibiotics Wink and IV drugs without sulphite preservatives . This is generally powders which the nurses mix with water for injections prior to administartion .  Liquids in vials are more likely to contain sulphite preservatives .

Just some ideas for you Wink

Josie
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starfish
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Re: Immune system
Reply #9 - 04/11/11 at 14:34:11
 
It's ok Kristi.....we did sort of morph together there for a minute Smiley
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starfish
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Re: Immune system
Reply #10 - 04/11/11 at 14:45:35
 
I looked up my blookwork copies, and it is the IGG that is low. (714)  (IGA 123 and IGM 97)      Not sure what that means.    I'm just frustrated as Dr. Akin, didn't, I guess, believe me, and the other "regular" doctors, don't suggest anything.   Actually I think my doctors here in town, think masto is an immune problem. Guess I need to educate them. I am feeling bad all the time....and the doctors don't have any suggestions for me.   I guess I am really frustrated at this point.   I think everything is a tigger......right now anyway. Undecided  Angry  Cry
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Josie
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Re: Immune system
Reply #11 - 04/12/11 at 00:11:04
 
Hi Star ,

I didn't see you antibiotic allergys , are they the same as kristis ? Wink I hope I didn't upset you posting . I wanted kristi and any memebers who have penicillin allergies to have some info Wink

Dr Akin , from what you first said , hadn't seen / noted the low IGG . So I don't think he doesn't know what to do .  It was more he wanted it confirmed Wink Don't lose faith in the specalists  Wink They will do what is necessary Wink

Triggers , yeah , I understand . I flush seemingly randomly , this morning I awake flushed . Most likely pollen related / dust as I am preparing to move house . My bed will be changed and hoovered today to be safe Wink

I kept a symptom and food/ everything else diary religiously for a year . It was only this that helped me suss many of my triggers . Especially gelatine , as it bothered me in medical examination gel ( bad ) capsules ( bad after 2-3 days ) EKG gell tabs ( flush within 2 mins ) USS gel ( itchy , sweaty and grouchy in 3 minutes ) These were over a period of 18 months . The first gyne examination I had with medical gel , I was day 1 post a biggie with steriods and IV antihistamines , so this protected me from the gel that time .
One soap was fine another , simple soap , made me instantly flush , that was easy to avoid .

My reactivity , is dependant on how full my bucket is .

Maybe we can help you suss some triggers Wink

Jose
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starfish
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Re: Immune system
Reply #12 - 04/12/11 at 04:46:23
 
I guess my frustration with my specialist visit is because the visit is only once  a year. He did asked the suggested blood test results be forwarded to him.  I'm just frustrated with the whole "extravaganza" lol. I'm sure we can all relate.   My antibiotic of choice is DOXYCYCLINE HYCLATE 100MG CAPSULES, taken for bladder and in the event of other known or unknown infections, sicknesses.
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Josie
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Re: Immune system
Reply #13 - 04/12/11 at 06:05:22
 
Hi Sweets ,

I understand Wink I don't want to play this game anymore ;-( regularly . But I do know by doing so regards meds, triggers and diet . I am reducing its potential and very real impact Wink

I lose patience with big reactions .;-( but I know I have to do this Wink

My kids are my drive . I need to be as well as possible for them . I cry when I need to and am asked by nurses sometimes if I am down . I am not . I am just very @@@@@@ @@@ , that I had a break and now I am back here . It passes and I feel OK  . I also under reported to my doctors as sympathy made me feel so sad , I didn't want to see that look I was being given . That way I could " pretend " I was ok .
When my friends asked how I was , i would say fine , so I didn't ahve to admit things were different and I wasn't going to go back to normal .I wasn't ever very average anyway Wink

I did like belonging though . So when that went I was a little lost . I knew how to be josie the nurse , mum , sister . Now I know I am ok . I can be myself without some of these things .

It was the day I realised I couldn't control my body and I had to stop trying and accept the new status quo , was my moment that I was able to really live with this . I use my 36yr old mind to help my 86 yr old body .

So yes , I want to get off , but know staying on is the best way to keep me safe Wink

I think I remember Ramona saying doxycycline being a mast cell degranulator . I will check with her .

If I am asked now if I am OK , I answer honestly , not at all British I can tell you. But when I say I am OK and I smile , I mean it .

many hugs
Jose

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juliegee
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Re: Immune system
Reply #14 - 04/26/11 at 10:09:23
 
I also have a compromised immune system. (I a DXed with MCAS/D by Dr. Castells.) I have actually met so many with this comorbidity that I find it hard to believe they aren't related somehow. My IgG is consistently quite low- goes to 475 (Normal 750-1500) and my IgA is intermittently low.

I suffer with chronic sinusitis, sore throats, and ear pain- all worse when I am tired. The best treatment for me has been Wilson's solution (an antibiotic in saline solution) delivered via neti pot.

My local allergist sees no reason for IVIG as my infections aren't severe enough. I see a rheumatologist for severe reynauds (occasional black fingers & toes) who highly recommends that I start ASAP. I tend to react to new meds and this one really scares me.

I just wanted to say that you are not alone- I think many of us with mast cell disorders DO have compromised immune systems. One theory that I've heard is that we possibly fought some unknown chronic infection for so long that our immune systems become hyper- vigilant (MCAS/MCAD/IA) and eventually depleted...

Julie
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