This is my first post here. Last week, my 18 year old son became very ill with high fever, vomiting, etc.. He was diagnosed with influenza B and suspected Lyme disease. He was in the hospital ER for two days. To my surprise, the Lyme blood test came back positive on Monday of this week during our appointment for new symptoms such as facial numbness and symptoms resembling stroke. The doctor diagnosed Bell's Palsy caused by Lyme. He is having a hard time eating and his right eye will not close, even when sleeping. The Prednisone makes him feel terrible; very agitated. He is taking Doxycycline (100 mg x 2) for the Lyme. We go back to the doc in 3 weeks.
I wonder what to expect. My father, now deceased, had severe and debilitating Lyme. Other neighbors on my street have had similar experiences with life changing complications.
I'm glad this support site is here.
Wobie
Posts: 3 | From Rhode Island | Registered: Jun 2009
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posted
More people will come along with advice, but if he has Lyme Disease he should not be taking prednisone. Big no no for Lyme disease.
I know they probably gave it for the Bell's Palsy, (it has happened to me five times so I know hwat its like) but as far as I know and I am still fairly new to Lyme alos, he definitely should not be on prednisone.... Hopefully someone more knowledgable will come along, but you should also put this in the medical section for more advice.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi wobie,
Welcome!
I am so sorry that your son is suffering.
It is very critical for you to know that prednisone is the worst thing a lyme patient can take....it allows the bacteria to flourish by suppressing the immune system.
His dose of doxy is low. He needs to see a good LLMD who is ILADS trained.
He also needs evaluated for common coinfections that the ticks also spread.
His Dr is probably either a GP or an Infectious Disease Dr who follows the IDSA guidelines.
The IDSA does not believe in chronic lyme or long term antibiotics and they will not treat him adequately.
There are many people here who have sufferered for many years due to not being diagnosed or being undertreated.
I don't want to see him have a lifetime of debilitating symptoms because he did not get adequate treatment.
Please post for a LLMD in Rhode Island or nearby states on the "Seeking a Doctor" board if you have not done so already.
The sooner, the better....there is usually a wait for an appt.
His Dr will tell you/him that he can treat him adequately and he will be fine....do not believe it.
Please read this info carefully...it is written by a Lyme expert who is ILADS trained....you want to find a LLMD who uses guidelines like this....
You may also want to copy this post to the Medical Questions board where more people will see it....and you'll get more responses.
There is a ton of info available on lymenet and alot of intelligent people with lots of experience.
Please keep posting and let us know that your son is going to get help from a LLMD.
-------------------- 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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I am so confused and have so many questions. Whew!
My son will not take any more Prednisone.
I am reading the suggested links.
His doc intends to perform another blood test in 3 weeks. I think a Western Blot.
Can Lyme intially present with high fever and vomiting?
ER docs wondered last week if the influenza B test result was a false positive and symptoms only due to Lyme.
He had no sore throat or upper respiratory symptoms.
It is a bit overwhelming.
Wobie
Posts: 3 | From Rhode Island | Registered: Jun 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi wobie,
I am very sorry for your son. You did the best thing for both of you by coming to Lymenet. There are wonderful, supportive people willing to share knowledge and advice.
As those before me have said, your son needs a LLMD. The best way to find one is to go to "Seeking a Doctor" and post a request for a referral. Someone will help you. LLMD's are usually very, very busy and it can take months to get an initial appointment so it is best to start your search right away.
As for your question about a high fever and vomiting with early Lyme, the answer is yes, these can be symptoms.
I like the website www.canlyme.com a lot because they offer a very succinct, easy to read, symptoms list. My LLMD uses their list as a guideline in his initial screening process as well.
Best of luck to your son.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
This sounds like the symptoms my son had last week:
BABESIA SPECIES-
Rapid onset of initial illness, often with sudden high fever, severe headaches, sweats and fatigue and dizziness.
He was vomiting too.
And now Bell's Palsy.
Wobie
Posts: 3 | From Rhode Island | Registered: Jun 2009
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
With Bell's Palsy, EVEN IDSA guidelines would recommend IV Ceftriaxone and NO STEROIDS, if I'm not mistaken!
What was the physician's justification for the Prednisone?
I'd find another physician immediately.
-------------------- 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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bettyg
Unregistered
posted
to all,
i have SENT HER KIDS LLMDS IN HER AREA; she has this info now and will be calling tomorrow
i didn't make her post in seeking dr. area in order to help her.
BUT WE REALLY PREFER LLMD REQUESTS & FEEDBACK ON LLMDS BE SHOWN IN SEEKING DRS. FORUM.
also start YOUR OWN post there,
and not TAG onto someone else's! it gets very confusing, and you all know how much neuro lyme we volunteers have that send out llmd info. thanks for understanding everyone.
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