posted
Hello. Over the past week I have developed many unusual symptoms. I have a very enlarged lymph node in the back of my head (right side) have flu-like aches, pains, all over my body and joint pains everywhere
... stiffness in my knees, ankles and have had broken blood vessels pop in both of ring fingers on my hands and most recently developed a large swollen nodule on the joint of my left index finger at the knuckle joint.
About 5 weeks ago I had an itchy bite just below my navel that persisted for over a week, continually scabbing over and still itching which would cause me to scratch and break it open again.
Finally it has "healed" but has left a raised circular area with a deeper scarred area in the center. We had been to a family outdoor picnic days before I noticed the "bite".
Now, 5 weeks late I have all of the above mentioned symptoms and feel like I'm falling apart and terrified at what weird symptom I might suddenly develop next!
The timing of this is horrible as I had just had a fatty lipoma discovered in my chest area and had an appointment with a surgeon the very next day after my swollen glands appeared.
The other symptoms have occured just since that appt on Friday. I saw the NP at my clinic today and she had blood test drawn for Lyme, Rocky Mt. and RA.
I am very nervous and scared and feel terrible! On top of this, I am diabetic and she started my on Steroids that have already sent my blood sugars soaring.
I am also taking Doxicyclin for 10 days. Any comments or information on my specific case would be greatly appreciated.
Oh, the NP didn't think the swollen finger joint "fit" for a tick-borne illness so that is why she ordered the RA test as well.
Results could take a week or so to get back.
**Breaking this up for easier reading.. will move to Medical Questions.**
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Can someone please move this to medical AND break it up so I can read it??? Thanks!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Remember to Smile
Unregistered
posted
quote:Originally posted by TN Kim: Hello. Over the past week I have developed many unusual symptoms.
I have a very enlarged lymph node in the back of my head (right side) have flu-like aches, pains, all over my body and joint pains everywhere ...
stiffness in my knees, ankles and have had broken blood vessels pop in both of ring fingers on my hands and most recently developed a large swollen nodule on the joint of my left index finger at the knuckle joint.
About 5 weeks ago I had an itchy bite just below my navel that persisted for over a week, continually scabbing over and still itching which would cause me to scratch and break it open again.
Finally it has "healed" but has left a raised circular area with a deeper scarred area in the center.
We had been to a family outdoor picnic days before I noticed the "bite". Now, 5 weeks late I have all of the above mentioned symptoms and feel like I'm falling apart and terrified at what weird symptom I might suddenly develop next!
The timing of this is horrible as I had just had a fatty lipoma discovered in my chest area and had an appointment with a surgeon the very next day after my swollen glands appeared.
The other symptoms have occured just since that appt on Friday. I saw the NP at my clinic today and she had blood test drawn for Lyme, Rocky Mt. and RA. I am very nervous and scared and feel terrible!
On top of this, I am diabetic and she started my on Steroids that have already sent my blood sugars soaring.
I am also taking Doxicyclin for 10 days.
Any comments or information on my specific case would be greatly appreciated.
Oh, the NP didn't think the swollen finger joint "fit" for a tick-borne illness so that is why she ordered the RA test as well. Results could take a week or so to get back.
Dear TN Kim, Hello, and welcome to the supportive LymeNet community! So sorry you're having such a disturbing array of symptoms. But it's not too unusual for us!
I broke up the text of your post since many here have vision problems that make run-on paragraphs too difficult to decipher.
You'll get input from many members, but may I suggest ASAP that you create a new post in our "Seeking a Doc" forum? You most certainly need to get an appt with a Lyme-literate M.D. or LLNP right away!
I'm not a healthcare professional, but your description screams "Lyme disease!" to me.
You'll need at least 200 mg doxycycline 2x/day for at least 6 wks and 3 months beyond the end of all symptoms. No conventional Western med duck will prescribe that, so you need a LLMD.
posted
Thank you for moving this, I was too ill last night to make much of an effort to find the correct place! Sorry!
I will form my posts better in the future as well.
My RX for the Doxy is a total of 200 mg per day for 10 days. I assume that if I get a pos. test that she would extend and / or increase the script. I will most certainly begin looking for a specialist as soon as I can ... especially if I get a positive test result!
posted
I hate to be the bearer of more bad news, but steroids are very, very bad if you have Lyme. They depress your immune system and can make the Lyme much worse.
I will echo the recommendation that you see an LLMD as soon as possible.
The tests are inaccurate, so they can come back negative even if you have Lyme. You need an LLMD to tell you whether you have it or not, based on your symptoms and history.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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quote:Originally posted by LightAtTheEnd: I hate to be the bearer of more bad news, but steroids are very, very bad if you have Lyme. They depress your immune system and can make the Lyme much worse.
I will echo the recommendation that you see an LLMD as soon as possible.
The tests are inaccurate, so they can come back negative even if you have Lyme. You need an LLMD to tell you whether you have it or not, based on your symptoms and history.
Oh, great! Because I was amazed that my huge swollen gland is virtually gone this morning after one day of steroids. However, being Diabetic, the steroids have skyrocketed my blood sugar which is also a very bad thing! What to do? I'm really getting overwhelmed now.
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
TN Kim always get copies of all test results, many have found out later than they did indeed have significant bands but were told neg.
Any bands on WB should be suspect and Elisa is only est. to be 30% accurate.
And pics of any rashes that pop up is very helpful.
I would not take the steroids either. The swollen gland may have been doing what it is supposed to do filter out the bad stuff.
Steroids just camouflage it/suppress the immune system and allows Lyme to spread unchecked.
Your rash screams Lyme so please make a LLMD appt. And get your doctor to give you as much Doxy as possible.
-------------------- 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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-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
*STOP* TAKING THE STEROIDS & RUN TO A MORE LYME-INFORMED DOC FOR PROPER CARE AT THIS POINT!!! The health of the rest of your life may depend on it. I'm being serious here, 'Kim'. Steroids are a NO-NO if even the Possibility of an active Lyme infection exists. The steroids knock down the very immune response you Need to keep this from getting worse!...IF it's an infection, which, by all indications, it Is.
IF the Lyme test comes back "negative", not Only does it NOT rule out Lyme disease, but your body has barely had enough time to build up Lyme antibodies to even Show on the standard "ELISA" Lyme test. That test was developed for surviellance & statistical purposes- to track disease spread- so the results are evaluated more strictly (to avoid "counting" false cases).
I would think you should be on a few weeks of an antibiotic (typ. doxycycline or amoxicillun). A sample of your blood is Then sent, "Priority", to a GOOD lab, like IgeneX (CA) or MDL Labs (NJ) to be re-tested & the 'Western blots' run for borrelia Burgdorferi (Lyme), regardless of the Lyme titre result.
--------------------
I'm not a doctor... but I play golf!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I am so overwhelmed, terrified and upset! Of course my regular Gp is on vacation so I have a call in to the NP that prescribled the meds for me. This is all just too much for me right now. Just went through the sudden death of my 9 week old grandbaby girl ... SIDS and she passed on May 24 which is only a matter of a day or two after I found my bite.
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
TN Kim,
You have my deepest sympathy on the loss of your precious granddaughter. How sad.
God is cradling her in His arms for all eternity.
May you and your family find the strength you need to endure your terrible loss and get through your illness.
Take it one day at a time.
We would love to see you on the General Support board also...can be very helpful.
I will say a prayer for you and your family.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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You have my deepest sympathy on the loss of your precious granddaughter. How sad.
God is cradling her in His arms for all eternity.
May you and your family find the strength you need to endure your terrible loss and get through your illness.
Take it one day at a time.
We would love to see you on the General Support board also...can be very helpful.
I will say a prayer for you and your family.
Thank you very much ... it has been very hard ... man, I am getting pains in my face as I type this ... grrrrr....
Anyway, your verse is my 2nd favorite to my 1st of "In All Things Give Thanks"! I praise my almighty Father in Heaven and am thankful even in the midst of this newest storm for He alone knows the plans that He has in store for me!
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I'm so sorry to hear of this, Kim But the Good news is you're in the early stage(s) of Lyme (if it IS Lyme), in which case you have an Excellent chance to Cure yourself of this if you're under proper, experienced care.
See if you can't get an extension to your 'script from your NP... say, another 10 days, atleast. The IDSA specifys 14-21 days of abx for Lyme in many situations in their treatment guide-chart. This should be enough to hold you over until your GP is back.
There ARE 2 Lyme support groups in your state that should be of significant help:
Also check with the Doctor Referral section of both this Site & that of the L.D.A. <www.lymediseaseassociation.org/referral> to see if you can find a "Lyme-literate" doc [LLMD] who is not Too far away. Good luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
You might ask that LLMD what reading materials or supplements would help until your husband can get into the office.
--------------
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. The top labs are here but a LLMD should first guide you. Again, with a bulls eye, lyme does not need to be tested but others should be assessed:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
Online Radio Interview with Dr. Klinghardt - explains why heavy metal toxicity impairs lyme treatment success
====================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here.
Book: Lyme Disease and Rife Machines by Bryan Rosner
==================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
MAKING THE MOST OF YOUR LLMD VISIT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
TN Kim if they saved any samples of your precious granddaughter they can test it also.
I suspect bacterial and viral illness in SIDS deaths, but because the tests are so bad I suspect they are missing the organisms.
Parents are told "We didn't find anything". And that is the end of it. For me now that I live Lyme it would not be the end of it for me.
But I understand for many it may be too late to really pursue the cause.
But I wish they would make it a law that enough samples have to be saved to investigate if parents or researchers so wished to go that route. Prayers.
-------------------- 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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onbam
Unregistered
posted
Ten days of doxycylcine will do nothing for you. You need 3 months past the point at which your symptoms disappear, likely with drugs to target the spore forms of lyme and any other infections you may have gotten from the tick at this point we still don't even know what they all are.)
And you need to get off of steroids ASAP. They will make it so that you will have this for the rest of your life. You don't want to have to go around worrying about transmiting this!
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posted
I did stop my steroids today by my choice but my NP said it would be fine ... no bad effects from quitting mid-treatment. I hope she is right ... don't need more symptoms!!!
Just waiting until the results are in and see what they say ... maybe I will be "lucky" and have a conclusive "positive" ... since that appears to be better than a false negative. WOW, never thought I would want to find out that I do have a disease. Hmmmm.....
I was also tested for RA but from what I have read just today, it is often times a result of the initial Lyme disease so it is in effect a symptom of Lyme. I'm surprised that no one has commented really at all about my pic of my finger and the swollen joint ... I really wanted opinions on that and also no comments on my bite mark to say if it looks like a typical Lyme mark. Is there somewhere particular where I should post the pics to get them noticed?
posted
My condolences on the loss of your grandchild!! How terrible!!
You said you posted a pic here?? I didn't see it.
I would post it on this thread ... or you did and I'm just blind?
I'm so glad you got off the steroids! What an ignorant dr!! I doubt the test will come back positive.. but you can find an LLMD and have him/her test you later.
Hope you can go to a walk-in clinic and get more meds??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
OH.. I found your other thread... no need to post it here again.. It will just make the thread go wide!!
Don't know what to think about the bite(s).
Could be a tick bite.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Hi TN Kim! I'm so sorry about your sweet little grandbaby...........
Wow, you've been through a lot lately. And to top it off, sounds like you have a little uninvited guest in your blood. It all sounds like Lyme. Nobody has the exact same symptoms every time. I found out I was positive June 16. Since then it's been a whirlwind of research.
I am taking the advise of this forum and based on the information I have learned through my research. Our cases sound a little similar. You know exactly when you suffered a bite. Same as me. WE are both only about 6-8 weeks into exposure. That's good too, we caught it early. The main thing is to get it early and attack it like a rat on a Cheetoh!! I found a LLMD....called one morning, faxed my labs at noon, and by 2pm, his office called to give me an appt for July 6th. I was treated like a human being, treated with URGENCY, which was totally lacking with the infectious disease doc's office here where I live.
Important thing is to get to a LLMD, call and find one somewhere. Research, honey. You can beat this thing. I got my appt. set up. They are going to RETEST me & send the blood to Igenex, the only reliable testing lab for Lyme. My first test was done at Specialty Labs in CA. Tested positive for one band of Lyme antibody. The CDC doesn't even consider it positive!
I'm not going to rely on the good ole boys club to get me well. I refuse to lay down & die. As we speak, I've been off my Doxycycline for 7 days. I must retest July 6...if I am taking Doxy, it will interfere with the test. My symptoms are getting more pronounced. I've GOT to hold on til then.....I'm saying all this to tell you KEEP FIGHTING. Don't take 'no' for an answer. Get to a LLMD.
You are valuable & fragile. We will support you. If it wasn't for this forum & group of folks encouraging me what to do, I'd be sitting waiting for my Infectious Disease doc appt......for September!!!! NO urgency for them, oh no, they don't think it's urgent. NOT!! please read my personal story & video here: http://hubpages.com/hub/The-Hushed-Truth-of-Lyme-Disease-My-Story-Part-1 You can email me anytime thru this thread. WE care!!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
Well steroids may be bad for Lyme they are necessary if the patient needs them. I had Bell's Palsy and you need to stop the nerve damage with the use of steroids.
Posts: 32 | From Minnesota | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
For me the steroids for sudden asthma attacks/lung nodules only diminished the symptoms and delayed diagnosis for another year.
If they suppress the immune system to not recognize foreign invaders, and reduce inflammatory markers,
it is logical on tests for Lyme it will not be found until another symptom/s appear on down the road. As many Lyme patients have had to tolerate.
But we do recognize in some instances they are required to prevent further damage.
-------------------- 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
The decision about steroids should really only be made by a lyme literate doctor, so stop for now until you see this kind of doctor and let him/her decide.
Another problem with steroids and the doxy you are taking is that they can stop the antibody response, so that if you are tested and have no antibodies, it will be called a negative result. The FDA has said this in an advisory some years ago, and it is still true. Most lyme testing is based on detecting antibodies to a germ (your body's response, in other words.)
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: The decision about steroids should really only be made by a lyme literate doctor, so stop for now until you see this kind of doctor and let him/her decide.
Another problem with steroids and the doxy you are taking is that they can stop the antibody response, so that if you are tested and have no antibodies, it will be called a negative result. The FDA has said this in an advisory some years ago, and it is still true. Most lyme testing is based on detecting antibodies to a germ (your body's response, in other words.)
Ditto
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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