NEED HELP figuring this out please

[BeanBandit]

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Hi everyone, I have been living with Lupus for 10 years now, diagnosed for maybe 5 but this is not like any of the flares I usually get.  Its been going on for 1 month now and I haven't got any answers or help, I have no insurance which makes things very difficult, and I have to wait until january to see a reamatologist again.  I don't know if this is my lupus my fibromyalgia or something completly different.  It all started the day after my last family member here left to move to florida, after useing soy and whey protein isolates 4 tablespoons a day for a month and having a diet soda everyday for a couple weeks. I'm not sure if any of those have anything to do with this but they are things I remember as different before this happened.  My first symptom was a tightness completly surrounding my throat, somewhat like the feeling you get when you hold in tears and need to cry, it felt like the muscles were swollen or inflammed pushing my throat walls together til they would touch, and still is to this day one month later like I have two chins it is so swollen, they tested me for strep and thyroid and both were fine, my throat doesnt hurt its everything around it, then after about a week my symptoms increased to flushed, extreme shakiness, numbness, seeing sparkles and alittle light disturbances, chest and upper arms became darker red and extremly hot to the touch with dizzy spells, sneezing and more nasal congestion. No more sneezing now a month later just nasal congestion still. The back of my knee then seemed to swell, I'm getting muscle spasms from head to toe, with numbess, tingling and pin ***** sensations all over especially in my back and Mostly legs. Mostly legs now with pains in my chest and under arms. Alot of tingling in feet now. Also having green diareha which seems to be normal color now for the last couple days.  Peircing pain thru out body. Now with all the shakiness, nightmares, insomnia, numbess, pain, dizziness, and muscle spasms it feels like the muscles in my legs are permantly flexed, pain thru my arms, and the muscle across the upper part of my chest feels like its just hanging there and about to slide off, while I'm wearing a choker around my neck.  New symptom to add on today is it feels like I have a heating pad under my feet sometimes now (comes and goes). And my heart pounds alot. EKG was fine. They did a inflammation test before it had gone systemic and down into my legs bu that had come out ok, but nevertheless doesn't mean its not lupus, does it?  A lot of the other symptoms I have been having I have found in vasculitis and mutiply sclerosis, but as we all know lupus can mimic ms and can effect the central nervous system, probably one of the scariest ones of all.  Really hard to tell right now if its the lupus, or another condtion I might have developed. Really seems like Lyme disease as well. I have been useing the dreaded prednisone and I still can't get this under control, doesnt seem like the prednisone has been helping for last month.I did a homepathic treatment for greif and loss called natrum muriaticum you use for 4 days, benedryl at night and sleep md for sleep, I have started vitamins for fish oil bcomplex, b6, b12, and magnesium and vitamin c to try to get this under control.  I got 2 more labs done the ra came backin normal range and the ANA came back neagative this time... so does that mean that it cant be the lupus in any way?  Not even in the cns?  how in the world are you supposed to tell if you have been diagnosed with lupus already if maybe you have developed lyme disease as well?  Or maybe even ms if lupus mimics ms???   Please help.  My left knee seems to get better sometimes but then it comes and goes very painful!  and now getting the same pain in the back of my thigh above it. but I get more flushed with heat on skin and redness and shakiness all the time.... my migraines have also increased completly and doubled in pain.  Heartburn seems to be everyday mostly even with acid reducers.  Got really nauseas today too.  About 2-4 months ago I had noticed a small thing on my leg I kept pickin at which wouldnt come off.... dont remember it being black like a tick but it was the size of one... now it leaves alittle scare the size of one.  I am getting quite clumsy now....dropping things and such.... im not like that.  Also have some stiffness in my hands when Im sleeping.... and in my toes on the left foot alot (same side as my knee)

.... they tested for white blood cell count which was high 14.8 I think...... and it went down a week later to 11.9 ( I think I was taking more prednisone at that time to doesnt make sense.... they said it might have been from the prednisone that I was on for only 2-3 days before the test, but the pharmacist told me it would NOT elevate the cells after only 3 days,


Things I have tried so far-Acupuncture, detox baths, epsom salt baths, sleep, rest,  fish oil, b complex, b6, b12, benedryl, now trying grapefruit seed extract for the last 2 days, vitamin c, michaels w-zymes (which incresed the spasms havent taken for 2 weeks)  magnesium,  adrenal health, prednisone, aleve, massage therapy.

[JGMARLOW]

HELLO, I AM NEW TO THIS FORUM THING, BUT I READ YOUR QUESTION AND I HAVE RESEARCHED A LOT ON LYMES AND IT SOUNDS LIKE YOU HAVE HAD IT FOR AWHILE AND IF YOU WERE BIT AGAIN IT JUST MAKES SYMPTOMS WORSE. LYMES IS A PARASITE THAT JUST TAKES OVER AND EFFECTS THE NERVOUS SYSTEM AND ALSO GOES TO THE BRAIN. DOCTORS DO NOT DIAGNOSE IT MUCH, WHEN INFACT MORE PEOPLE HAVE LYMES THAT IS THE MAIN CAUSE OF HUNDREDS OF SYMPTOMS AND WHEN ANY STEROIDS ARE USED IT DOES GIVE THE PARASITE EVEN MORE FREEDOM TO SPREAD THROUGHOUT THE BODY.  I KNOW SO MUCH ABOUT THIS BECAUSE MY 22 DAUGHTER HAS IT AND WE BELIEVE SHE WAS BORN WITH IT FROM HER BIRTH MOTHER, AND ALSO MY BEST FRIEND. WE LIVE IN FLORIDA AND DOCTORS REALLY DO NOT THINK ANYONE HAS LYMES HERE. IT IS ALMOST IMPOSSIBLE TO FIND A DOCTOR THAT WILL TREAT SOMEONE THAT HAS CHRONIC LATE STAGE LYMES AND ACTUALLY THAT IS ANYWHERE IN THIS COUNTRY.  I BELIEVE IT IS A GOVERNMENT COVER UP, BECAUSE OF HOW THIS ALL STARTED TO SPREAD IN THE USA BY A LAB IN CT. IN THE 60'S. THIS IS WHY IT IS HARD TO GET THE CORRECT DIAGNOSIS AND TREATMENT.  I MEAN THINK ABOUT IT, MOST OF THESE NEW DISEASES DID NOT EXIST YEARS AGO, BUT NOW ALL OF THE SUDDEN WE HAVE ALL THESE NEW AND DIFFERENT DISEASES. IT JUST MAKES COMMON SENSE THAT THESE ARE ALL FROM ONE SOUCES, THE BABESIA PARASITE AND THEIR ARE MANY OTHER DIFFERENT PARASITES THAT ARE ALL UNDER THE LYMES HEADING.  PLEASE JUST DO SOME RESEARCH ON THE WEB ABOUT THIS AND YOU WILL SEE. IT IS SAD THAT WHAT OUR HEALTHCARE ALL BOILS DOWN TO IS MONEY....THESE DRUG COMPANIES AND DOCTORS WOULD NOT MAKE AS MUCH MONEY IF THEY JUST SAID IT WAS FROM THE PARASITE AND WITH TREATMENT IN THE FIRST 2 WEEKS OF THE TICK BITE, WITH AS SIMPLE ANTI-BIOTIC AS PENICILLIN , THE CO-INFECTIONS WOULD NEVER START. BUT LEFT UNDIAGNOSED AND UNTREATED FOR OVER THE 2 WEEK PERIOD THE PARASITES JUST START TO SPREAD AND BY THE TIME YOU FIGURE OUT YOU HAVE IT, THEN IT'S CHRONIC AND WILL BE A LIFE LONG BATTLE, WITH NOT ONLY WITH THE TREATMENT BUT ALSO FINDING A DOCTOR TO GIVE YOU THE MEDS NEEDED TO CONTINUE TREATMENT AND IT HAS TO BE DONE IN THE RIGHT WAY OR IT WILL NOT HELP. I AM NOT TRYING TO SCARE YOU BUT IT IS SERIOUS. THERE'S A DOCUMENTARY OUT CALL  UNDER MY SKIN AND IT WILL OPEN YOUR EYES ABOUT LYMES.  I MYSELF DO NOT HAVE IT BUT I DO HAVE DIABETES WITH SOME OTHER HEALTH ISSUES, BUT I HAVE LEARNED A LOT ABOUT THIS FROM MY DAUGHTER AND BEST FRIEND HAVING IT.  PLEASE START GETTING TREATMENT ASAP.  GOD BLESS,  JOHN 3:16 & ROM. 10:13

[BeanBandit]

I will, thank you! I hope he can help me.

[JackieCalifornia]

Let us know how it goes!

[BeanBandit]

And yes I have copies of all my labs and such I will taking with me :)

[BeanBandit]

Thanks so much for your responses.  I have a apt on Monday with one, or at least I was told he is :)  I talked to a reamatologist today on the phone and she said considering that the prednisone hasn't helped any at all for a month even with the megadoses she doesn't think it is my lupus.  And that I should see a infectious doctor.

[gorbybelle]

Not all ticks are black.  The one I had on me was a lightish brown/grey. Have you looked at the 'scar' close-up - I would check to see, [if indeed it was a tick]- if by picking it you have the mouth part still in your leg or anything, maybe use a magnifying glass - this might sound 'odd' but I remember a 'poster' here mentioning this.,

I agree with 'JackieCalifornia' - you should be checked for lyme - preferably by a LLMD.

Best wishes - Gorbs x

[JackieCalifornia]

You've really been through the mill ... and are still going through it, it sounds.

No one here is medically trained, and your situation and history sound very complex, so finding the right open-minded MD to help you is the first most important thing I would do.

In your place, I'd find an LLMD to get a work up to rule out Lyme and coinfections that come from the same ticks.  Other MDs know about Lyme, but because of the split in the medical community over how serious Lyme is or isn't and how best to treat it, many cases of Lyme are missed or undertreated.

Lupus is one of the diagnoses that Lyme patients sometimes hear.  Unfortunately the steroids given to treat Lyme are the exact opposite of what Lyme needs:  prednisone suppresses the immune system, while Lyme is a bacterial infection that needs an active immune system.

Do you have copies of your medical tests?  If you do, I'd take them to an LLMD for an evaluation and workup.  It may not be Lyme at all, but why not be sure?  That's what I would do.  I hope you feel better very soon.