Recently Moved, Newly Diagnosed, Kidney Infection... Ugh!

[cajunsis]

Hello, I was recently diagnosed with Idiopathic CD4+ Lymphocytopenia and am new to the state I live in. I have a GP, but he is in WAY over his head with me. My CD4 count is 61 - well below the "good prognosis".

I had a bladder infection, he gave me 4 days of antibiotics. 2 days into it, I am passing blood and puss. I call them back on Friday since the weekend is coming up, and tell them -asking if they are sure 2 more days will be enough. They assure me it is, that I need to give it time to work. Ok... But I only have 2 days left! Ugh... I trust the Dr, finish the meds, went back for a new urinalysis - all was hunky dory except I still hurt. I wait a week, still in pain, go back and take a second U/A, still "no infection". Dr dismisses me and said it is probably "residual pain".

So, (switching Drs) I call the Infectious Disease Dr who confirmed my original diagnosis, left a message, and asked for a referral. No response in 2 days. I call back, leave a message on the nurse line, no return call. Call the receptionist, explain, still no return call.

My immunologist has released me as she stated she could do nothing else for me.

I randomly called a urologist in the phone book, but the earliest I can get in is a week from today.

I am new to the state, new to the area and frustration is just a tad high. I am sick, not thinking clearly, and good grief I have no idea what to do!

Any suggestions?

Euvah. (You-vuh)

[elained]

Dear Canjunsis,

It's so hard and scary to be sick, newly diagnosed and having just moved. And then somewhat abandoned by medical professionals!

I looked up your condition as it is new to me.

en.wikipedia.org/wiki/Idiopathic_CD4%2B_lymphocytopenia

Idiopathic CD4+ lymphocytopenia (ICL) is a very rare medical syndrome in which the body has too few CD4+ T lymphocytes, which are a kind of white blood cell.[1] ICL is sometimes characterized as "HIV-negative AIDS" by AIDS denialists, though in fact its clinical presentation differs from that seen with HIV/AIDS.[2] People with ICL have a weakened immune system and are susceptible to opportunistic infections, although the rate of infections is lower than in people with AIDS.[3]

It is very rare, and seems that you would be susceptible to many infections.

I have Interstitial cystitis, which is an inflammation of the lining of the bladder. Not only do I get UTIs very easily, but after the UTI is gone, I have REBOUND PAIN which feels just like the original UTI, or even worse.

I would try to find a new Immunologist, as well as Urologist.

If your urine checks OK then you probably don't have a new infection, even then, as I know so well, it feels like you have one again, and it's EVEN WORSE.

I stopped having UTIs when I started taking a daily supplement of D-Mannose, which good research has found to be very effective against UTIs.

Nitrofurantoin is the antibiotic I always took for UTIs. The trade name is Macrobid.

CONCLUSIONS:
In our study, D-mannose powder had significantly reduced the risk of recurrent UTI which was no different than in Nitrofurantoin group. More studies will be needed to validate the results of this study, but initial findings show that D-mannose may be useful for UTI prevention.

www.ncbi.nlm.nih.gov/pubmed/23633128

Please keep us posted on how you are doing. It is scary, but you will progress on this journey and become more accustomed to dealing with your condition.

Hugs, Elaine

[cajunsis]

Thank you for your reply, Elaine. I do get a lot of infections and unlike CVID, I cannot take IgIV infusions to help me. The lower rate of infection applies to people with t-cells over 500; mine are critical at 61. That doesn't apply to me. By the time they found me to have low t-cell counts, I had bottomed out.

I will call the immunologist today again. I am extremely frustrated with this whole situation.

On top of this kidney problem, I am reacting to every medication I am given with an autoimmune response. I have whole body numbness and tingling, but my hands and feet are affected worse. Someone suggested I was having a 'mass cell' response... ?

I want to find a Dr who can guide me, but they take one look at my blood work and say, "I am so sorry... there is nothing we can do."

Thanks again. Feel so alone in this... even my husband sees my predicament.

[elained]

Hi again Euvah

I think they were referring to a Mast Cell response:

en.wikipedia.org/wiki/Mast_cell

You can read about Mast Cells and how they respond in this Wikipedia article.

More from Wikipedia on your condition:

ICL may indirectly trigger autoimmune diseases. It has been associated with several cases of autoimmune disease Sjogren's syndrome.[3][19]
Because all of the reported autoimmune diseases and lymphomas involve B cells, one hypothesis proposes that ICL's narrow T cell repertoire predisposes the immune system to B cell disorders.[3]

ICL is a very rare disease.[1] In 1993, a total of 47 confirmed cases were reported in a survey sponsored by the Centers for Disease Control.[20]

My husband is a research Immunologist. Mast cells are what are engaged in an autoimmune/allergic response.

Those of us with CVID have a 25-66% chance of autoimmune conditions, so I have often been dealing with what seems to be allergic/autoimmune responses.  I have a diagnosis, for example, of Sjogren's Syndrome, and a couple of other autoimmune type disorders/

However, since I have very very low IgE (the antibody involved in allergic/autoimmune responses) I cannot actually HAVE true allergic/autoimmune responses.

Instead I have a more basic reaction to things that bother me, mostly medications, but also wool, ragweed, sheep's milk products, and the IVIG infusions.

In order to tolerate the IVIG I have to take Medrol (Methylprednisolone) a steroid that suppresses my immune response.

What I get is an immune response that involves Cytokines. I have something like a Cytokine Storm, but not as lethal.

en.wikipedia.org/wiki/Cytokine_storm

You can read about this at the Wikipedia site. But remember, I don't have a full blown Cytokine Storm, more of a Cytokine Temper Tantrum.

There are many many Super Symptoms that go with autoimmune/allergic conditions, and include numbness and tingling, pain, depression, profound fatigue, rashes/itching and burning skin, abnormal body temperature, feeling too hot and too cold, palpitations, and a host of other things.

It is very hard to know when a 'symptom' is part of something we know we have, and when it is the start of something new, possibly scary!

I have said before, you are on a journey with your new 'conditions' Euvah, and you will need to relax, breathe, and realize that on the whole this is a life long process.

Your worst danger at this point is infection, and your best defense is knowledgeable medical professionals to provide you with the best antibiotic treatment when necessary.

But since you are diagnosed with a chronic condition, you need ongoing support, information and a place to ask questions. I would advise you to seek out other forums, particularly those devoted to your very rare condition.

I guess they are hard to find. I'll look.

I would try the Immune Deficiency Foundation Friends forum:

idffriends.org

I post there and find it very helpful.

You are posting here because your condition IS included with Immune Deficiencies.  There are many Immune deficiencies that cannot be treated with IVIG.  IVIG only addresses a deficiency of IgG.  Many have deficiencies of IgA and IgM, and these cannot be corrected with IgG.

You will find support, Euvah.  JUST KEEP AT IT!

Hugs, Elaine

[s162216]

Hi Euvan,

Sorry to hear about all the problems that your having, and I hope your able to find a doctor that is able to help you. I can identify with the urinary tract infection problem that your having as I had some problems in that area (complete urinary retention for which they eventually had to catheterise me for 5 days) after having my appendix removed recently, and they were convinced that I had a UTI that was the probable cause of this (on top of it being reactive to the surgery) as I showed symptoms of a UTI except they were unable to find one no matter how many times tried. After they removed the catheter the problem went away, but the UTI-like symptoms persisted for a few more days which they were unable to explain.

Have you considered contacting the IDF for advice about what to do regarding your medical care? They have comprehensive details on many doctors who specialise in the treatment of PID conditions, and I'm sure they would be able to help find you a suitable person that can be of assistance to you.

Good luck with everything,

Sam

[s162216]

cajunsis any updates/progress getting a suitable doctor?

[cajunsis]

I do have an update - thanks for asking!

I went to a different Dr and I am still not overly impressed with him. I hate paying to go to Drs and trying to find one that 'suits' my needs... I am contemplating what to do next on the Dr issue...

In the meantime, I have received a call from the NIH in Bethesda, MD and have a team of specialist working with me. I go out for testing on March 31st and April 1st. I am to see 6 Drs, have numerous CAT scans,x-rays,blood work and who knows what else. They told me I will have all my results (with the exception of the blood work that takes a few days) when I walk away on April 1st with recommendations on what they suggest to help me! I am to pay for the first visit, but they will pay for follow-ups if I am accepted.

It was crazy how quickly I was contacted by the NIH! What is more crazy is how little hope they (or any other Dr) gives me. I am stunned and honestly still in shock at my diagnosis. "No cure, no hope" was one Drs words and every one since then doesn't say it, but I get a myriad of replies; such as "I am so very sorry for your diagnosis" and "You have been diagnosed with a catastrophic illness; there is a reason you are depressed", and "Oh. Wow." with a sympathy look.

And that is my update. I really must find a Dr I trust and like.

[s162216]

cajunsis Well its great to know that your at least getting somewhere now, and I really hope that your able to find a doctor soon who you trust.

Sam