posted
*****Posting this again ---- Any feedback would be appreciated! Thanks!*****
Hi everyone,
I'm STILL fighting this same sinus infection that has landed me in FOUR different doctors offices ----- this all began Dec. 28th. HELP ME!!!
History of this nightmare:
1. Went to an Urgent Care facility on a Sunday night (as advised by my Immunologist, after her answering service contacted her.) The dx'd me with strep throat --- after rapid test and blood work.
**Tx: Got a shot of Bicillin, cough med and instructions to go home, go straight to bed.
2. Followed up with my Immunologist 2-3 days later ---- my throat was so swollen that it was hard to breathe (would wake up "panting" trying to get my breath while sleeping!)
**Tx: Got a shot of rocephin, and 14 days of Augmentin - 875mg 2x/day.
3. Was feeling a bit better - then lost my voice AGAIN - while I was in mid-sentence. Started feeling worse again by the next day and called at least 3 of my doctors because I needed to be seen THAT DAY. (Jan. 14th)
My ID doctor called back 1st and squeezed me in THAT DAY, so he was the "winner!" I thought a fresh pair of eyes might help, too.
**Tx: 5 day pack of Azithromycin (that's supposed to be the equivalent to a full 10 day course.) He wanted to give me a steroid shot, but I said no.
He understood my concerns, pros & cons, and agreed ----- but he wanted me to get over this infection. Gave me a script for a Medrol 4mg dosepak, if I changed my mind. Told me to call him before I started the Medrol, IF I changed my mind.
He also gave me some referrals for a Rheumatologist for my Raynaud's that was severely worse, which he happened to notice. (This is relevant to my post.....)
4. Ended up at the same Urgent Care place 5-6 days later (Jan.19th.) My Immunologist's office couldn't fit me in that day and sent me there. They're connected in some way, and it really was better for me to go there anyway.
They did labs and even a CT scan of my soft tissue under my neck to rule out a mass! I looked like I had the mumps ---- I was THAT swollen again.
They saw nothing in the CT, yeah!!! The doctor looked at my throat again and said I needed to see an ENT and have my throat scoped. He gave me names..........here we go again.
5. Managed to get in to one of the best ENT doctors office the next day (Jan. 20.) He scoped me (how gross!) and told me I had a severe sinus infection with pus pockets everywhere. He said that I had pus "pouring" directly onto my voice box and that was why I kept losing my voice since Dec. 28th.
Explained to me that this was more serious than I might realize, esp. given the amount of time it had been going on.........not to mention all the different abx that had been tried.
**Tx: 5 days of Levaquin while we waited on the culture of the junk down my throat to come back. Along with that, Mucinex 2x/day, Nasonex 2x/day, saline rinse 2-3x/day. Also, he had me STOP taking my Xyzal that I take every night for allergies.
6. Got a call from ENT's office (Jan. 26) with results of throat culture ---- NOTHING! Of course the culture didn't grow anything --- look at all the abx's I've been on!!!
**Tx: Additional 10 days of Levaquin and a follow up visit on Feb.4th (last Thurs.)
7. Saw ENT, scoped me again and guess what? Still have pus dripping down my throat. He couldn't believe it. He even had a colleague scope me as well.
**Tx: Changed abx to Avelox (even though I was having LOTS of side effects from the Levaquin). Then he insisted on me having a steroid injection - 80mg of Depro Medrol. He ordered a CT scan of my sinuses to be done AFTER the 2 weeks of Avelox - sched. on Feb.18th.
TOTALLY forgot about my upcoming appt. with the Rheumatologist this past Monday, Feb.8th. Yep, this was AFTER getting the steroid shot on Thurs. the 4th. How stupid of me! You KNOW the labs are going to be messed up due to that steroid shot and all SIX different abx!!!
The Rheumatologist did an ANA,IFa; Sed Rate - Westergreen; CBC w/diff./platelet; C-Reactive Protein, Quant. I got a call late Friday, which I missed, however the message was that "the labs looked normal, except the sed rate was a little high."
I won't be able to talk to the doctor's office until tomorrow or Tuesday, but I can't believe they told me that the steroid shot and all the abx tx wouldn't effect the labs.
OPINIONS?????????? I went to see him for my Raynaud's. I also had a positive ANA on my last lab work done in November. I don't know what my last sed rate was, but when it IS done, it's always 1,2 or 4.
I've discovered I'm NOT a good steroid person! I'm a crazed animal at times and HATE how it's made me feel in every way. I'll NEVER do that again!!!!!!!!!!
Don't you think my labs will be inaccurate due to the steroid shot? Especially the ANA and sed rate? I'm so frustrated I could scream -------- oh, wait, I just did!!!!!!!
Thank you for letting me rant and rave about this. Any feedback or suggestions would be appreciated. I'm so sick of this.
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My sed rate since the beginning of illness is up and down. It might be as slow as 12 or I believe my highest was 112.
So my sed reading is a picture of how much inflammation is going on. Somedays are good, some days suck.
My ANA has always been negative. But my c-protein reactive is also like a yo yo.
So I would think that sinus infection/inflammation could cause a high sed rate. Steroids should of calmed things down.
The key word is should. Steroids just seem to set most of us off in an even higher immune supression.
I know Tutu had a serious sinus infection a couple years ago that she couldn't whoop. Maybe she can add some thoughts.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Glad you brought this topic back up, terri.. as I did not see it yesterday!
The CT scan is very important. Two years ago I had the same thing happen. The abx treatment went on for 8 mo before I was finally able to get my blocked maxillary sinus operated on.
You likely have the same thing.. or maybe both sides??
Sinus infections can be VERY hard to clear! I was even prescribed a special nasal spray that contained clindamycin and gentamycin. Didn't work either.
Yes, I would think the steroid shot would affect the ANA and sed rate, etc.
Why are they bothering with a either of those anyway?
I did nasal washes 5 times a day...maybe that will help you??
Does your "wash" contain baking soda too?
Have you tried silver in the nasal wash?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
People are given steroids to bring down their SED rate. I'd be worried that this doctor does not know that. Also, the lupus foundation states that steroids can cause the ANA to go from posiive to negative. You could probably search around and find references.
I don't know if any of this applies to you but I wanted to mention it in case it does.
Dr. S. of mold warriors has info about sinus infections that are hard to treat. As I recall, specific methods of culturing for it must be followed. I think a much longer time to culture is necessary. I've seen his treatment method for this somewhere on the internet. A search through his sites or through google should uncover something.
Labs with differences (p (had to remove the less than sign in order to get lymenet to accept this text) 0.001; N=1000) were MSH, VIP, ADH/osmolality, ACTH/cortisol, MMP9, VEGF, ACLA, AGA, TGF beta-1, C4a, vWF and presence of multiply antibiotic resistant, biofilm-forming coagulase negative staphylococci (MARCoNS) in deep aerobic nasal spaces.
http://www.moldwarriors.com/mold-illness-faqs.cfm#17 Why are MARCONS difficult to eradicate? Most of theses organisms make biofilms, which are near-im- penetrable barriers for antibiotics to cross. Also, their presence reduces our white blood cells' ability to leave mucus membranes and attack these colonizing organisms. This community of organisms’ capability to rapidly make antibiotic resistance factors is extraordinary. The new age in microbiology must take into account biofilm formation and how it affects human illness.
http://www.biotoxin.info/shoemakerblog/viewtopic.php?t=10 Biofilm-forming, multiply antibiotic resistant coagulase negative staphs, ones that make exotoxin A and exotoxin B, are incredibly common in Lyme patients who have a concomitant low level of alpha MSH. Biofilm is called "slime" by those few in the field who measure it. We culture the deep aerobic nasal spaces (about 3" back into the nasopharynx) and use an API-STAPH technique to prove the presence of these nasty little commensals.
These staphs make hemolysins that are 22 amino acids long that form a tetramer in blood, and in turn activate a huge pro-inflammatory response. The coag neg staphs must be eradicated before any significant improvement will occur. Often there will be a die-off response when antibiotics are begun, but not one associated with a rise in MMP9 such as what we see in Herxheimers. The use of one antibiotic at a time for these organisms creates a driving force that selects for mutant, resistant species.
Methicillin resistance is found in over 60% of these organisms.
The not uncommon use of rifampin for Bartonella by some practitioners concerns me, as I am now seeing a bloom of rifampin resistant coag neg staphs in those patients who come here later. Rifampin is one of the few antibiotics that can penetrate slime.
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I don't know if a steroid shot can effect and ANA or Sed rate. I do know LD can. A steroid injection can effect immunity and lower it, hence being called immunosuppressants.
I had a steroid shot in '06 and have never been the same since.
I have tested positive for ANA's and then it goes negative - ANA positive can mean you have an infection and LD is one that make an ANA positive. Sed rate testing is not accurate according to my LLMd, it is suppose to show inflammation. He likes the C3A and C4A tests instead of ANA and sed rate testing.
Blood can be drawn at Quest or Labcorp but must have a big note on it stating to send it to "Jewish National Hospital in Denver" for the most accurate results.
I don't think I remember having a high Sed. Rate in years! It's usually 1-4.
The Rheumatologist DID say I had swollen lymph nodes - (2 under both arms and 1 in the left groin.)
****************************************
My sinus CT was perfectly clear ------- I just found out last night.
********************************************
Had to call an ambulance on Sat. afternoon due to severe vertigo and left temple pain. Had a CT of my head - NORMAL.
Blood work: WBC: high RBC: low MCV: high MCH: high AGAP: low A/G Ratio: low CK MB Index: high Segs: high Lymphocytes: low Segs-Bands #: high Macrocyte: 1+, None seen, Abnormal
I don't know what some of these even mean, but I thought I would post them. If anyone has any insight, please let me know.
I was sent home with a script for "anti-dizzy" medicine - can't remember the name. I've had to take it 2x. Plus they gave me a shot of morphine & zofran for my temple pain, along with another script for some pain killer I've never heard of.
SO: NO ANSWERS! (Oh, I can't drive either! That's helpful............)
I think that maybe ALL of those ABX I took from Dec. 27th until last week, along with that steroid shot MUST have killed SOMETHING!
I think my lymph nodes may be swollen because they're holding toxins that I'm not getting rid of or something? Maybe the vertigo has some connection to that?
OR, I've simply lost my mind.............
I'm still dizzy, and I'm going to lay down AGAIN. Any thoughts on this would be SO appreciated.
Thanks, terri3boys (the ditzy blonde) Posts: 268 | From Texas | Registered: Aug 2007
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posted
Hi Terri.. good to see you back.. I was wondering about you.
I don't know a lot about the blood tests...but I THINK the MCV and MCH might be high when you have babesia. Someone is free to correct me if I'm wrong.
You are slightly anemic.
Glad your CT came back OK .. whew!!
I feel for you on the temple pain and vertigo.. Both are horrible things to have to deal with. I hope it goes away soon!
Have you been tested for babesia and bart??? Bart can cause swollen lymph nodes.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I tested positive for Babesia Duncani thru IGeneX probably a year ago. The B. Microti always comes back negative - through LabCorp and IGeneX.
I had never been tested for the Duncani until last year...........all this "regional" crap about how you couldn't be exposed to this strain or that strain depending on where you live.........it's a ridiculous theory.
The Bart comes back negative, too, but I've got distinct "scratches" that come out on my left leg. I even took pictures of them.
My doctor clinically dx'd me with Bart when I pulled up my jeans a couple of years ago and just showed her my leg with the scratches. She said, "Well that sure looks like Bart to me!"
So many of the sx seem to overlap, I can't remember what sx "list" everything belongs to.
I've had problems with my red blood cells for about 10 years, I guess. It's been called everything from hemolytic anemia to macrocytic anemia to pernicious anemia to myelodysplasia to myeloproliferative disorder.........
I'm not sure which one it is! I know my bone marrow doesn't make enough red blood cells, and not enough of them mature.
So, I've got "giant" red blood cells that get all torn up during their 4 month live span. And there not enough of them to do their job!
I had an iron infusion once (very painful!!) -- but it didn't help very much. The bone marrow biopsy was MUCH worse, though. The doctor who did it just decided to do it right then and there in his office. I didn't have a chance to think about what it was going to feel like!
Also, my white blood count is usually low, not high. I don't know what's going on. I think it's time to deal with my blood issues since I seem to be more out of whack than usual.
Can you tell I haven't been to a hematologist in a long time? I've gotten a great referral, and I'm going to call her office tomorrow.
Anyway, I need to get in bed. All I've been doing is resting like I'm supposed to. I get so mad when I accidentally fall asleep because I really don't let myself sleep during the day. This has been the kind of sleep that is totally unintentional. I guess my body must need it.
Thanks for any bright ideas on this sudden vertigo fiasco.
G'night, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
I do hope your dr is addressing the bart and babs then. They can cause a lot of problems if left untreated.
Yes, sounds like you need a hemo!!
take care!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've had some of the same horrible reactions as you with steroids shots and even low dose prednisone (not knowing I had lyme at the time).
I don't know if a steroid shot can affect the SED rate but here is what two doctors say about that - you might find some clues here about how the body of a lyme patient responds. I'm sorry I can't study and edit this to find only the details you need . . . --------------------------------
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines . . . . [above] . . .
. . . An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader. . . .
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think you got bugs in them cells. It would have been more interesting if they had checked actual
protein to see what was really in the high hemoglobins. Mine was not protein.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
What about this vertigo/dizziness thing that sent me to the ER?
Yes, I am going to get a GOOD hematologist that my neurologist thinks is right for me. Also one that she can confer with ------ I've managed to get most of my really great doctors at the same place.
That way, they all have access to the exact same info about me through the same hospital data base.
I see the neurologist on Monday! I've got all of the records from the ER visit on Sat., plus the films on a disc. (I went to the nearest hospital, not the one she is affiliated with. I should have gone there...........)
What do y'all think about my theories about toxins not getting out or my autonomic nervous system dysfunction going nuts or whatever?
What could cause this sudden vertigo to come back, along with my blood results to be so out of whack again? Are we looking at B. duncani becoming active?
I just can't figure it out!
Posts: 268 | From Texas | Registered: Aug 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The dizzyness is caused by the bugs. Mine got a lot worse on treatment.
And has throughout treatment at other times. I have had sharp stabbing head pains when I know I am really hitting it.
The steroid shot may have dropped your immune system down enough to allow further infection.
Thats why they don't recommend taking them unless absolutely necessary. I would not test for anything while steroids are on board. False Neg.s...
I would guess you have multiple infections and possibly more virus'.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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