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dream77 08-04-2008 11:43 AM

What falls in the category of "Infectious disease"
I;ve been to many docs in the last 1.5 years .. endocrinologists, neurologists, and rheumatologists and no one can figure the cause of the neuropathy I am going through .. and recently a lump/nodule development in the breast and a cysts developement in the ovary and simultaneously both giving rise to so much pain. The docs don't believe the pain is actually from the lump or the cysts but there is pain and burning (neuropathy) perhaps and now my PCP is sending me an infectius disease issue. I am lyrica 75 mg for relief for now and I am terrified about thinking about stopping it if the cause is not diagnosed.

The last milestones I remember when I didn't have neuropathy and these problems is back in Sept 2007 around when I got abunch of vaccines and got a bad stomach virus maybe 2 months apart. I am sure the vaccines happened first and then the stomach bug. Immediately after the stomach bug I remember neuropathy issues starting up...

I have no fever or anything.. Can an infectious disease doctor help.. what does he do really ?

harka 08-04-2008 01:06 PM

Re: What falls in the category of "Infectious disease"
Hi there dream77,

So an infectious diseases specialist is a person who has training in both internal medicine (i.e. three years of residency) plus two years of subspecialty training in NOTHING but infectious diseases.

Infectious diseases encompass the conditions which are caused by micro-organisms such as bacteria, viruses, parasites etc. Examples of infectious diseases include garden variety common diagnoses like pneumonia to weird and wonderful things like malaria or Lyme disease.

All doctors have the ability to treat infections, but infectious diseases specialists will be consulted to treat the more complicated things. One other big part about infectious diseases is the art of diagnosis. There are many conditions which can present in a very unclear way with no explanation, and a good proportion of these end up being underlying infections for organisms which tend to cause disease in a very slow, over-many-years fashion.

Now to your case: one that many patients misunderstand when their doctors give them a diagnosis (especially ones for neurologic disease) is the idea of the disease being "idiopathic" or in plain terms "the doctor doesn't know what is causing it". Patients tend to interpret this as, "the doctor doesn't know what is wrong with me". That is not the case. There are many conditions that can be diagnosed based on both clinical, lab and imaging data, and many times there may even be a treatment for the condition, but no one knows what is CAUSING the condition. An example of this is Crohn's disease: there are specific treatments FOR the disease (which are more than just treating the symptoms), but no one knows exactly why the disease ends up happening.

In the case of your symptoms, there are a few bugs which can cause nerve disease. One of the most common ones is the same virus which causes chicken pox in kids--it causes Shingles in adults....i.e. the Varicella-Zoster virus. Have you had shingles lately? Where IS your neuropathic pain, by the way?

You mention the idea of vaccines causing your symptoms. Which vaccines did you get? Vaccines have been known to cause neurologic symptoms VERY rarely, but are known to make worse the symptoms of patients with MS. As such, patients with brittle MS should avoid most vaccinations.

The stomach illness you mention is interesting. Did you get something similar to food poisoning? First of all, the vaccinations and the stomach bug have nothing to do with each other; however, certain intestinal bugs are known to result in an immune reaction AFTER the infection which can affect nerves. In the worst case can result in a condition known as Guillain-Barre syndrome. If you had food poisoning with a bug called Campylobacter jejuni or Yersinia enterocolitica, you can get nerve involvement afterwards.

There are a few other bugs which can affect nerves including some viruses, and some bacteria like Borrelia burgdorferi or syphilis. The ID doc's role will be to see if s/he can find evidence of an organism which may have caused (or is causing) your symptoms. Just to set your expectations straight, the ID doctor will likely not be able to provide you with a magic cure that will take your symptoms away. Rather s/he may be able to find what triggered your symptoms. A lot of the time when an infectious disease causes nerve damage, it's not the micro-organism itself which is causing the symptoms, but an overzealous immune response following the removal of the bacteria by the immune system.

dream77 08-05-2008 06:05 AM

Re: What falls in the category of "Infectious disease"
your mail is very informative though I gotta admit.. I feel so hopeless .. it also seemed to confirm that there isn't much hope for me to ever feel like I used to before.

The intestinal bug I got was a gasrointestinal virus (from my then 12 month old).
I've gone through spinal taps.. MRIs etc to chekc for MS.
I don't have the record of immunizations but these were a formality for the immigration/green card processing required for non americans.
I know I probably had all tose vaccines as a child but I still needed them for the govt record purposes .

The neuropathy had started back in Sept 2007 and I remember taking flagyl and then feeling numb spots on my face and those got better but in a few weeks there was a distinct numb spot on my nose and on my ear lobe.. then my wrists and ankles started to burn and urt and the neuroDoc said it was carpal tunnel and another neuro doc used the "idio" term. Well recently the kicker has been a breast nodule dev and a ovary cyst devl and my gut says this is not a coincidence. The pain and burning in the breast and under arm areas unbearable and in the abdomen as well. I can even feel small nodules in the arm pit that hurt and the whole damn area burns. AND a whole area .. my entire ear lobe and even eyelid eand nose (all on the left side) seem to not have the sensation right.. it doesn't feel like it should.
I don't have pets (never had) so Lyme seems to be not a good contender.
My hope is if someone can find a cause there maybe a aligh chance of a cure else there is none.. I am only 30 and have way too many dreams ..
Sine my labs look great and I have no fever/cold etc but I do have a thyroid diseas in the sense I am not on thyroid medication but just that I have those antibodies skughtly elevated.
I am sure I don't have herpes and have never had shingles.
I don't fit the bill for fibromyalgia either.. I was unable to gain wait for a long tme but then they found I was low on Vit D and those supplements helped and I gained a little weight in the last 2 months.
I am so clueless.. all I know is I want my quality of life back and dont want to feel weird/sick all the time.

dream77 08-05-2008 11:43 AM

Re: What falls in the category of "Infectious disease"
I infer from your other messages on other threads, that you may be a naturopath.. not that your response to me wasn't useful already...
Can you also help me understand if there are tests to find out if this is indeed an overzealous immune response.. I've been put through so many tests already ... and none show anything that could cause this stuff (which is a relief and a worry)
I know I am already in the auto immune prone category .. had gestational diabetes.. had post partum thyroiditis .. and high slightly elevated thyroid antiBs and both parents have autoimmune issues of thyroid and diabetes.. but I am not their age yet ...
No one knows why the neuropathy and the nodule developements.. makes me think it is either a developing cancer or /and a developing brain disease.. and I don't like the sound of either..

harka 08-05-2008 04:04 PM

Re: What falls in the category of "Infectious disease"
I infer from your other messages on other threads, that you may be a naturopath.. not that your response to me wasn't useful already...
Can you also help me understand if there are tests to find out if this is indeed an overzealous immune response.. I've been put through so many tests already ... and none show anything that could cause this stuff (which is a relief and a worry)
I know I am already in the auto immune prone category .. had gestational diabetes.. had post partum thyroiditis .. and high slightly elevated thyroid antiBs and both parents have autoimmune issues of thyroid and diabetes.. but I am not their age yet ...
No one knows why the neuropathy and the nodule developements.. makes me think it is either a developing cancer or /and a developing brain disease.. and I don't like the sound of either..[/QUOTE]
Hey dream77!

No no no!!! Though I can't reveal what I actually do, I am by no means a naturopath :D What was it that I said that made you think that?

In terms of an "overzealous immune response", it's actually something that kinda "sounds" naturopath-y, but in reality it's something that is quite a recognized phenomenon in conventional medicine. For example, we all know that Hepatitis B and C chronic infection can lead to cirrhosis, but in fact, it's not the viruses themselves which lead to the cirrhosis, but your immune system fighting it, but damaging your liver at the same time!

Rheumatic fever is another example. Some people, after getting an infection with a group A Streptococcus, continue having an antibody producing response even when the bug is totally gone. The immune system continues to produce these antibodies, and they can go and cause inflammation of the heart and joints leading to a condition called Rheumatic fever.

Certain neuropathies are also the result of this. In certain people who develop food poisoning with the bugs I mentioned in my previous message, the immune system for some reason (not known why) continues being overactive when the bug is gone and this overactivity can result in the demyelination of peripheral nerves which can lead to partial or total paralysis, albeit temporary. I'm wondering if this gastrointestinal sickness you had was from one of those stomach bacteria (even though you think it's a virus) and your current symptoms are related to that.

I know they are temporally related, I don't think those cysts have to do with anything. Those types of cysts are very common in young women and I think it just so happens they seem to be appearing at the present time.

Finally, another thing that a lot of patients have trouble understanding and doctors have trouble explaining are the types of diagnoses which require observation of a period of time. These types of diagnoses especially include those found among neurological and rheumatologic conditions. The problem is, often these diagnoses have to be made in retrospect because you have to look at your symptoms over time. When the first doctors were thinking you had a peripheral nerve entrapment syndrome (like carpal tunnel syndrome) it was totally reasonable to think that, because at that time, those are the only symptoms you were having; however, now that symptoms have progressed and developed somewhat, the diagnosis changes. One piece of advice I have for you is don't lose faith in your neurologist. S/he knows exactly what s/he is doing. Just keep what I said in mind--certain diagnoses can only be made after a long period of observation. What your neurologist is doing right now is trying to rule out all of the nastier things like MS, and also infections (which is why you're being send to the ID specialist).

harka 08-05-2008 04:11 PM

Re: What falls in the category of "Infectious disease"
One thing about the breast cyst: do you know it's actually a cyst? i.e. did you get an ultrasound or something to prove that? Certain neuropathies CAN be associated with cancer, but they don't present in the way you're presenting.

Unfortunately, MS is still also a possibility even though thus far the testing hasn't shown anything. For the most part, MS is a clinical diagnosis with supporting MRI and spinal tap findings, but it suffers from the problem of having to make the diagnosis over the long-term--what I was mentioning in the previous message.

dream77 08-05-2008 08:30 PM

Re: What falls in the category of "Infectious disease"
Thanks cgranulomatis,
Yes the breast nodule is from an Ultrasound .... nodule with ACR Birad-3 (Relatively bening looking) .. I looked it up and an an ACR Birad 4 would call for a biopsy..HA!!
I had a breast US 5 months ago and there was no such nodule then... just 2 silly fluuid filled cysts at the time and NOW this nodule AND "fibrocystic changes" ... HA!! AND the ovary cysts that was teeny weeny 4 months ago is 5 times its size .. kinda freaky with the timing.
I nearly think you're sympathetic towards the incompetent docs .. the one neuro I went to said "This is Carpal Tunnel" and I ask .. "What aout my ankles ".. He says .."This is CP" like he couldn't even hear my quaestion... then I ask what about my numb spots and he says .. "this is CP"... and he gave me a stupid analogy of "There are more horses than zebras" and gt rid of me... <expletive>...
Thanks .. I become more and more hope-less with my research ... and your responses .. I know you don't intend that..
Neither possibilities look nice .. MS.. Nerve disease .. Cancer..
All look ridiculously gloomy and I see no light at the end of the tunnel .. maybe there is none.. and I know the optimistic kinda crappy management books will advise me to create a freaking light at the end of the tunnel... if only I am ready to accpet that right now!!
Thanks for your replies.

Hyper86 08-05-2008 09:13 PM

Re: What falls in the category of "Infectious disease"
Hello There,
Maybe a certified Kinsiolagist wholistic Dr. could help you, they get to the root of the problem by simple muscle testing.
I had problems that went undiagnosed for 25 years till I found this kind of Dr.
I will pray for you, sorry your feelng so bad in body & spirit.

Kindest Regards,

harka 08-06-2008 05:16 AM

Re: What falls in the category of "Infectious disease"
Sorry dream77,

It is not my intention to protect incompetent doctors. I'm just trying to point out that doctors can sometimes be so bad at communicating that the point of what they're trying to get across is lost, and all the patient remembers is how, as in your case, the doctor was trying to brush you off. Actually, it does sound like the first neurologist was trying to brush you off--I am not defending that.

As for your breast and ovarian cyst. Those things are often very normal in young women who are menstruating. Don't forget that every month, a cyst grows in the ovary as it is stimulated by cyclic hormones, which then bursts when you ovulate. Additionally, fibrocystic changes are very normal in the young breast. What you actually need is a THIRD ultrasound at a different time in your cycle, and what you may actually see is that BOTH of the cysts have decreased in size.

You're right, I don't mean to make you feel hopeless, and I'm sorry if that's the impression that you got. I just think that in your situation where you have these, as it stands, unexplained symptoms, it is important for you to be patient (no pun intended) and keep trust in your doctor. You've convinced yourself of only two possible pathways--cancer or MS--and I'm telling you there are more outcomes. This may just be a transient thing which will clear up over the next few months. Please don't lose hope, because as soon as you do that, it'll be even harder to recover from this.

I apologize again for making you feel more hopeless--it was not my intention. Maybe I'll just stick to answering any specific questions you have from this point on! :)

dream77 08-06-2008 07:10 AM

Re: What falls in the category of "Infectious disease"
I really appreciate your responses.. you can't imagine how grateful I am for responses... I don't get that from ANYONE around me ... NONE .. be it family or doctors or friends..
They are just too baffled by me to respond in anyway.. Your responses are more that USEFUL is many many ways. I feel even if someone does give a diagnosis of MS I think there wil be a transient time when one is very upset and trying to accept but then after a while one gets used to the idea and one can go on and know what the prognosis is and prepare for the future rather than NOT knowing at all.. one can kill or keep alive certain dreams and plans and not always live in limbo.. though I also think parallelly that one is always in limbo and it only a mental thing of knowing and building some false sense of security (I am going into the weeds.. sorry.. but I am using this board to express myself.. I have no one can listen to me and understand my feara and get bored with my silly debates with myself that want someone to hear and not think I am insane). Its been nearly 2 years and I am so tired of not getting any answers for what is going on with me.
I have tried a homeopath and I thinkI am beyond his help... That is quite expensive and I wonder... should I just save my money for my child while I can or just keep wasting it on docs since I am anyways not getting any help from anyone.. Its a horrible feeling and I am so tired of taking leave from work, making appts research on smart docs and building up hopes for the appt coz I am going to see this supposedly smart doc and leave the docs office thinking "Ha!! He doesn't know what to do with me either"..
So please keep it coming.. The question I have is .. are there tests to prove I have a crazy immune system(I wish my brain was overzealous rather than the silly immune system) ?The *immunoglobin* tests came back fine..

Thanks so much for your resposne .. I looked up what a kins*ologist meant and was wondering if he could really figure out the cause of neuropathies .. It sounded that were more focused twards dystonias but I am quite ignorant so I would be grateful if you could share how a kinsiologist helped you and what kind should I lok for for my probs.. thanks.. you gave me something new to work on and find out.

harka 08-06-2008 07:36 AM

Re: What falls in the category of "Infectious disease"
I feel for you dream77. I can't imagine how difficult it must be to have persistent symptoms without an explanation. One thing I want to commend you on is your clear insight about how a lot of your situation is your own mental viewpoint on it. It's also really good how part of you is using your resources to find out what's wrong, but the other part of you is thinking of your children.

I certainly hope an explanation is found soon and I'll have my fingers crossed.

dream77 08-08-2008 08:08 AM

Re: What falls in the category of "Infectious disease"
Just wanted to give an update. I've been on lyrica for 7 days and besides the slight discoordination in the mornings.. it has been good for the pain but the numbness feelings are weid feeling are still there.. The pain in my arm pits and ove my right ovary seem to be coming back the last 2 days.. Could I be getting immune to the medicine ?
I read an article someplace that they were working to eliminate anti-rehjectiond drugs by mixing cells of the recipeient and donor of an organ and was seriously wondering why similar methds can't be done or no one is doing things to help auto-immune issues as well.. anyways ... I already don't expect anything much from my much awaited upcomng appt next week.. with the ID Doc.. but any suggestions for me before the appt would be useful. THanks

dream77 08-11-2008 08:06 AM

Re: What falls in the category of "Infectious disease"
I was doing more research on the weekend and there is one thing that sprung out .. and thats sarcoidosis and that actually seemed to tie everything together..
the nodule developments .. the neuropathy and the terrible pain in the breast area and painful armpits (maybe swollen lymph glands) the one on my right lower back .. over the ovary/kidney area..
Though I don't experience any other lung issues to do with breathing/wheezing.coughing.
Do you have any practical know how about this disease.. (I am already feeling guilty about putting my child at risk if this is what I really have)

Recenlty my sister was diagnosed with fibrosis on the skin coz she cgot a pa recurring painful.itchy bump on her face which wouldn't go away after years of treatment.
That made me look into other other diseases that have something to do with the same gene pool. Needless to say I am terrified and wondering what's worse.. cancer .. sarcoidosis.. MS... and I always seem to hit the same line .. "No cure.. No known cause and the "idiot" term.. oops I meant idiopathic.. "
Any insight into other useful reasearch.. things to look into.. gear up for the docs appt t'row would be useful.

harka 08-11-2008 08:51 PM

Re: What falls in the category of "Infectious disease"
Hey there,

sarcoidosis is definitely possible, though it would be necessary to biopsy one of the lesions. Under the microscope, sarcoidosis has a special type of inflammation called "granulomatous inflammation". Usually when you see sarcoidosis, yes, you'll see lung involvement with either enlarged mediastinal nodes, interstitial lung disease or both, but you can see ALL symptoms outside of the lungs.

You have to have infections (especially TB and fungal) ruled out prior to making the diagnosis of sarcoidosis, except in very special circumstances. Have you ever had nodules on your shins before? Have they ever tried to biopsy any of the skin nodules?

dream77 08-12-2008 06:42 AM

Re: What falls in the category of "Infectious disease"
I don't remember getting any nodules on the shins .. (I had to look up what "shin" exactly meant) I have had issues of acne and mild eczema since my teenage years began but the acne is no longer an issue.. the eczema still is if I am out in direct sunlight else not much of an issue. So much for skin issues.. occasionally I do get a pimple type thing undr the skin which is not even visible to anyone (including me) on my chin or something and that goes away. I expect that may not be a nodule like in sarcoidosis from the descriptions I have seen.

I see the ID doc today.. I keep thinking the fungal infection would have a symptom of fever and TB would have coughing associated ... I don't have either.. mentally I feel quite fine and energy wise I am quite ok.. so I am vrey baffled with myself..

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