posted
I'm searching for help. I've been treated this summer for "rheumatic fever". I have been told I might have something called "Still's Disease". I've been told I might have a virus. They just do not know. I've been in the hospital. As per my other post, I have a "presumptively positive" Western Blot for Lyme Disease. The dermatologist seemed to think my rash was unusual but had no answers. I'm looking for insight.
Symptoms:
Migratory joint pain (severe) some low fevers fatigue high SED/CRP rates strange rash that comes and goes quickly. Looks like I have been scratched. sore throats sinus pain
I am on prednisone which relieves the joint pain and the rash.
When I was treated for "rheumatic fever", I was given an antibiotic. An hour later I had such severe pain in one of my joints that I ended up in the hospital (again) for a few days. My Rheumatologist said that it was the antibiotic attacking bacteria. Could this be that reaction from Lyme Disease that I was reading about? I can't recall the name...something like Hux reaction.
Anyway, I am so frustrated. Any insight would be great!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Lily, You have a CDC positive IgM WB from Quest via your other post. You have lyme disease. That is the cause of these symptoms.
As a child I was treated for rhuematic fever. It was not rheumatic fever but lyme. I went for decades with untreated lyme and co-infections. Now I'm 53. I've been disabled for 20 years and have suffered greatly. I have body wide severe pain and many many other symptoms.
Please go to an LLMD ASAP and get appropriate treatment. Steriods will only make your lyme disease get worse. People who have lyme should not be taking steroids unless it is a life and death situation.
You wrote: strange rash that comes and goes quickly. Looks like I have been scratched.
This sounds like it could be bartonella, a common co-infection passed by ticks. You need to be evaluated by an LLMD for co-infections.
edited to add: Bartonella rashes don't usually come and go quickly as far as I know so maybe it isn't bartonella. Mine do change from red to deep purple and get larger when changing abx. Then they fade when on doxycycline but they don't go away unless treated with the correct abx I'm told.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi Lily! I was completely in your shoes for the last 7 months or so- saw 12 docs/specialists, getting tested for Still's etc as well as about all you can imagine with everything coming back fine. My migrating joint pains are not severe but I have the SAME type of rash you describe as well as neurological symptoms (crawling on scalp, internal vibrations), minor lymph swelling, low grade or jumping temperatures, low blood pressure, fatigueother oddities.
You can read my post from a few days ago when I found this forum being in the same situation you are now. This was a big week- my western blot from Igenex strongly suggests it's lyme and as luck would have it I got the blot results a day before my appointment with an LLMD. (I even posted the WB result on the forum) The LLMD put me on 400 mg doxycycline for 3 mths pending the next appointment.
What you have, esp this type of rash is probably lyme. The scratch-like rash looks like a bartonella rash. There are pictures of it you can view if you google "bartonella rash" or see links in this forum. I have this rash too and it's really weird and fades very quickly. My coinfection tests did NOT show bartonella (unfortunately showed echirlichia IgGs) but I do think I have bartonella b/c of this rash. But the LLMD ordered repeat co-infection testing anyhow.
I understand how scary this situation is and how difficult it is not to have answers. But get a WB done at Igenex. I paid fo SO MANY tests- all came back perfect and the Igenex complete lyme and coinfection panels was what finally gave me an answer. I had a WB run by the Mayo clinic which showed (and reported) completely nothing. Good luck to you! I was just/still am in your shoes but lyme was unfortunately the answer. It sounds like your symptoms may fit, esp given the quivocal WB. If you would like to ask anything/talk further don't hesitate to PM me!
posted
Wow! A CDC positive WB. Terry is absolutely right. Mine was not even positive by Igenex, let alone CDC and the LLMD did not hesitate to ID lyme. Don't take steroids if at all possible to avoid them.
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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posted
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression
and rashes!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Have to agree strongly with those who say avoid steroids like the plague if you have Lyme disease.
Within a couple of weeks after an spinal ESI (epidural steroid injection) I began to experience the worst pain ever. Most days I would wake up with pains in both knees and back similar to being stabbed by burning daggers. The only slight relief that I have found is the avoidance of dairy products.
Without a doubt, steroids have caused me the most pain in 13 years of affliction with TBDs.
[ 11. September 2007, 01:08 AM: Message edited by: SouthernCO ]
Posts: 175 | From Colorado | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Lily, You have described Lyme symptoms exactly. Are you saying you had a postive western blot?
Lyme symptoms stump all mainstream Md's, you need a doctor that deal specifically and only in TBD (Tick born diseases).
It is also common to have active viruses with Lyme. Lyme disease is a very complex disease with many other problems that can occur, co-infections (other bacteria ticks transmit) and if you are on cortisteroids, you can release viruses, I know it happened to me.
If you have LD, which is definitely sounds like, you should not be on prednisone. Pred lowers immunity and you do not want to weaken your immune system with a bacterial infection.
I urge you to study, please get educated. Start by reading this: http://tinyurl.com/2oylx6 I encourage your to visit the site below to read my story, other LD patient stories and there are many, many helpful Resource links.
The antibiotics made you feel worse because you were herxing. Herxing is an increase in symptoms when antibiotics are started. Lyme bacteria creates a die off and the toxins create pain. It is common.
You need to see a good LLMD (Lyme literate Md) as soon as possible. You can pm or email me from contact links I have given you here.
posted
Wow! You all sound so educated on this subject. It makes me feel like I have a long way to go! I am feeling overwhelmed at the idea os startin gthis whole process. Still, I feel a little more overwhelmed at the idea that I have been sick for a few months with no solid diagnosis.
posted
Wow! You all sound so educated on this subject. It makes me feel like I have a long way to go! I am feeling overwhelmed at the idea os startin gthis whole process. Still, I feel a little more overwhelmed at the idea that I have been sick for a few months with no solid diagnosis.
posted
Cymbalta is PREDNISONE BASED??!!!! Could you send me that info or tell me how you found that to be true? I have doc appt. in morning and would like to ask about it. I was just switched to Cymbalta after being on zoloft for 10+ years.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
" It does not sound like you have Lyme so you are lucky there but you came to a site where there are many people who have knowledge of the family of illnesses of which you have one. BUT if you test positive with a Lyme test from www.igenex.com (the only truly accurate Lyme lab that exists) then you have Lyme and being on prednisone is the absolute worst thing you could be doing. "
Thanks for the great explanation! Actually, I have a CDC positive WB test from Quest. The other test IGenX (spelling) was sent in last week (before I realized I already had a positive test). It appears that I do have Lyme. I have been treated for Rheumatice Fever this summer but it is starting to appear as though I never had it in the first place. Likewise, the MD's have suggested Still's Disease. The Rheumatologist has not come up with any specific diagnosis, yet. It may even go away...she says! Anyway, she gave me prednisone after the NSAID did not work. I am on 12 mg and I have been on it for about 3 1/2 weeks. My inflamation was out of control! Anyway, I do feel much better. However, I see her tomorrow and I am going to have her taper it off starting immediately. I am so glad to know this information.
What do people with Lyme DIsease use for inflamation?
quote:Originally posted by cordor: Cymbalta is PREDNISONE BASED??!!!! Could you send me that info or tell me how you found that to be true? I have doc appt. in morning and would like to ask about it. I was just switched to Cymbalta after being on zoloft for 10+ years.
No wonder it's used for the "pain of depression!!" Lord help us!! I'd like to see the info on it also!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lily: What do people with Lyme DIsease use for inflamation?
I use mangosteen. The antibiotics will reduce the amount of inflammation, but it will take awhile. I know some here use NSAIDS. My LLMD prefers not to use them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
That explains A LOT about the Cymbalta issues I had.....was on it 6 weeks and had two ER trips over it......
They thought it was the reuptake of the norepinephrine since I had only been on SSRI's...........VERY INTERESTING
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Lily: I'm searching for help. I've been treated this summer for "rheumatic fever". I have been told I might have something called "Still's Disease". I've been told I might have a virus. They just do not know. I've been in the hospital. As per my other post, I have a "presumptively positive" Western Blot for Lyme Disease. The dermatologist seemed to think my rash was unusual but had no answers. I'm looking for insight.
Symptoms:
Migratory joint pain (severe) some low fevers fatigue high SED/CRP rates strange rash that comes and goes quickly. Looks like I have been scratched. sore throats sinus pain
I am on prednisone which relieves the joint pain and the rash.
When I was treated for "rheumatic fever", I was given an antibiotic. An hour later I had such severe pain in one of my joints that I ended up in the hospital (again) for a few days. My Rheumatologist said that it was the antibiotic attacking bacteria. Could this be that reaction from Lyme Disease that I was reading about? I can't recall the name...something like Hux reaction.
Anyway, I am so frustrated. Any insight would be great!
Lily
Sounds like lyme and bartonella maybe babs mixed in? Yep you had a herx
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by cordor: Could someone please answer the question about Cymbalta being prednisone based???????????
I am sorry.... I have run searches all morning and so far I cannot find anything that confirms/denies this.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Sniff, sniff...? This thread smells funny.
I come up with nothing to indicate that Duloxetine has anything to do with steroids. I also see no similarities in warnings between Duloxetine(Cymbalta) and Prednisone. Site your source!
[ 10. September 2007, 08:22 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks TuTu made some room.
BTW- Nice tutorial on research Cave. I did the search you mentioned and sorted out those hits, but I can see (now that you mention it) how someone COULD think they were connected.
It does clear up though when you actually read the links that come up, to make sure that you understand whatever you're researching.
When I make comments on things like drugs, I always try to include supporting links. That way, if I'm wrong someone like you can catch it.
I would never take info on stuff like that and spread it without either backing it up or making it perfectly clear that I'm not sure what I'm talking about. I'd be afraid that someone might listen to misinformation and get hurt. I'd hate to have that on my conscience.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
yes, and why is it that the person who claims Cymbalta is prednisone based is not answering the question...."where did you get this info"?????? I STILL want to know where they got that info....because I am now taking Cymbalta!!!!!
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Guess I'm missing the controversial statement where w0tm says cymbalta is prednisone based. These are 2 relevant paragraphs I read from w0tm:
Paragraph 1. "Cymbalta and doctors who prescribe it will kill many patients too but no one will probably ever know."
Paragraph 2. "Basically, be careful of prednisone. It can be great or it can kill you or it can do irreversible damage. Be most careful of the time when it wears off. Wean off of it. Dropping down 10 to 20% a day. Stopping cold turkey if you've been on it for very long can be like getting off a street drugs."
Please correct me, but I don't see w0tm making a statement that cymbalta is prednisone based.
Posts: 175 | From Colorado | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by w0tm: CONTINUED
(snip)
It does not sound like you have Lyme so you are lucky there
??
It seems to me that it DOES sound like lyme. No one here can diagnose her, of course. However, symptoms fit. What makes you say this? Not only do the symptoms fit but she has a positive western blot.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
SouthernCO-
Here's what I see:
quote:originally posted by wOtm:
I just had a pain clinic doctor try to move me to Cymbalta from pain meds. I called him asking if he knew all the side effects and that it reduced pain by being prenisone based.
He's holding himself out as a research expert, then making statements which seem to have no basis.
I noticed yesterday, w0tm, that you were monitoring another thread of yours making no reply. Are you doing the same thing with this one?
It seems to me that you have been asked to back up your statement and can not or will not.
There have been people, who have come here in the past, who actually "get off" on diseminating misinformation to people who are terribly ill. I think that makes them even sicker than those they are trying to deceive. I sincerely hope this is not the case with you.
I'd really like to know how you justify your statement about Cymbalta "being prednisone based", would you please be so kind as to clarify this for me.
Thank you.
[ 12. September 2007, 03:09 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Sorry I butted in, and now I can see exactly what you mean.
Thanks very much, Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by cave76:
I'm glad that post is deleted.
I hope no one read JUST the first post and didn't come back here to see the discussion.
Me too. That would be really terrible.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hmmmm,
Now BOTH posts are gone and still no comment. Is it possible that my observations/suspicions were accurate?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
JUst a side note- the poster noted that he/she is/was on pain meds and pain meds can make people confused!!! Let's not assume the poster meant harm!!! COuld just be confused!!! & Lyme brained!!*)!*)!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I tried to remain open-minded, but really, what LLMD would #1)call in a prescription for Cipro AND Rocephin and #2)leave it up to a patient to decide which to choose, because he recognized that this person had done thorough research.
He claimed the LLMD was one of the top in the country. He then set about making him look foolish.
His elloquence made neuro-borreliosis AND heavy pain med use seem highly unlikely, IMO.
Though I suppose it IS possible that previous board trolls have made me paranoid, I just don't think it was the case in this situation.
Thanks Sarah, for trying to give me hope for humanity.
[ 12. September 2007, 05:26 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You may be a better judge of character than I am, I hope you're right.
I may at times become overly protective of those I deem to be my friends. I don't like to see people get upset.
Perhaps my present relapse just has me in a bad psychological state or the Lyme has skewed my thinking. I'm on a really low ABX dose right now & I feel like my head is going to explode.
If I am wrong in my perception of this situation, then I apologize to w0tm. If he truly is just a Lyme-infected newbie who made a mistake, I certainly would never want to hurt him either. We ALL make mistakes.
I trust your judgement Cave and if that's how you see it, I'm sorry if I got carried away.
I'm going to go lie down now before my head actually does explode.
[ 12. September 2007, 05:48 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
actually, Ali, i'm having the same not-good feelings too, and not just about what's in this thread.
i know i've had stretches of being just plain Lyme-witchy of late, so maybe we're sharing a skewed view of the poster. my apologies to him? if so.
the multiple references to specific LLMD's (even with initials), the push for more recommendations,and the subtle criticisms directed at LLMD's sets off my alarm bells...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for trying to make me feel less like I'm just paranoid, Dilly. I've actually been becoming suspicious over quite a few posters so I am thinking maybe it is paranoia.
I just really get upset when there is the potential for innocent suffering people, looking here for help, to get hurt by misinformation. It's been a pet peeve of mine. I really don't understand how people can think it's a fun thing to do.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you AliG...I think you were maybe speaking about trying to "protect" me (???) If so, thank you. I WAS very upset with this implied "fact" about Cymbalta. (which I just switched to 10 days ago after 10+ years on Zoloft). I asked 3 separate docs in the past 2 days and ALL say.....NO, No, No. They have no indication that Cymbalta is prednisone based. They actually looked at me like I was a little off my rocker.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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