posted
I have had severe roaming aches for 5 mos.,along with disturbed sleep , nausea, loss of appetite, and night sweats. I went to my internist, had a Western Bloc test w/ igG presents for nos P39,P30 ,and IgM P41 present. My internist said I didn't have Lyme but had no other suggestions as to what it might be. So I took it upon myself to go to a specialist. I went to a ILADS Dr. and was diagnosed with Lyme. She has put me on antibiotics 100 mg. twice a day. After reading many of your messages this seems like a pretty low dose. Any comments? I'm on my fifth day of antibiotics and feel somewhat better, but pain still in one of my knees.
Posts: 13 | From MD | Registered: May 2009
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bettyg
Unregistered
posted
welcome diva!
sorry i can't read any of your post since i have severe neuro lyme. we need short paragraphs and double spacing between each paragraph; see my guidelines below ok. big thanks!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
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.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi Diva! What antibiotic are you on? Are you only on one medication? Did the LLMD run more tests for coinfections? How long did he say you would need treatment?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Welcome, Diva . . .
so that you'll get more replies, here's the text with breaks for your original post: --------------
I have had severe roaming aches for 5 mos.,along with disturbed sleep , nausea, loss of appetite, and night sweats.
I went to my internist, had a Western Bloc test w/ igG presents for nos P39,P30 ,and IgM P41 present.
My internist said I didn't have Lyme but had no other suggestions as to what it might be. So I took it upon myself to go to a specialist.
I went to a ILADS Dr. and was diagnosed with Lyme. She has put me on antibiotics 100 mg. twice a day. After reading many of your messages this seems like a pretty low dose.
Any comments? I'm on my fifth day of antibiotics and feel somewhat better, but pain still in one of my knees.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Are you sure this is an ILADS LLMD? While not all follow the ILADS guidelines exactly - and some have their own protocols - most LLMDS who are ILADS-educated would give a higher dose and with a combination of medicines.
However, if you are sensitive to meds, she may have started you out slowly so as to minimize a herx reaction from bacteria die-off.
Sixgoofykids' questions are imporant about combination and also to assess for other tick-borne infections. If you are taking doxycycline, be sure to avoid sun exposure.
Did your LLMD also suggest support supplements, especially probiotics?
--
Since you've had lyme at least 5 months, (I'm so very sorry to say) the knee pain may take a while to get better. Some lyme experts say lyme needs to be treated for minimum of 30 weeks. And that would be with a combination, and rotation, of approaches.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
Excerpts:
" . . .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..."
. . . .
====================
This is part of Dr. B's complete guideline set posted above by BettyG:
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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. 
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