I'm just going to give you al a brief overview of what's goin on with me. Early january i started having disturbing visual things happen to me and i bounced from doctor to doctor, specialist to specialist to figure out what was happening with me. Nothing everyone told me it was nothing. My eye specialist actually got mad at me for crying in his office and said it's all psycho sematic and i should maybe consider anti anxiety meds.
Finally come february a family member that has dealt with lyme thought i should get tested through igenex, i did, and it came back positive. I have suffered from joint pains for years but told it was juvenile arthritis. My neurological symptoms came as of this year and included:
*memory loss * sensitivity to light *flashes in my eyes *after images of things that didn't even have light reflecting on it *I would haze things out * i would get almost like fluorescent dashes over my vision when i look at something stark white or a blue sky. * i would have numbness and tingling in my head, arms, legs etc. * i would get almost like a lava lamp in my eyelids when i would try to go to sleep. * lightning images all across my lower eyes and upper eyes
My journey with antibiotics has not been very easy i started with a bixin/tinidazole combo and was able to tolerate it for 2 months but felt it just wasn't touching my neurological symptoms much.
Fast forward through attempts with 2 different antiobiotcs that were giving me reactions and trying to figure out whether i was herxing or not i was finally taken off that medication. Had a coinfection panel done at my doctors office and in 4 months had failed to tell me that iw as infected at some point in time with Rocky Mountain Spotted Fever. I finally went across the border and saw an LLMD in the states that has now put me on doxy 300mg (for RMSF) and wants to introduce Rifampin since he believes that most of my neuro and other symptoms are coming from bartonella.
Has anyone had the doxy/rifampin combo? How long were you on rifampin for? DId it help you neurologically and were there any side effects?
As well does anyone know if 300 mg of doxy is enough? from what i'm reading it might not be. But i have also heard coupled with another antibiotic it's sufficient? I'm so confused.
Thanks in advance for any info you can give me...this is just a complete and utter hell to deal with.
Posts: 12 | From Canada | Registered: Sep 2009
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bettyg
Unregistered
posted
welcome
please break up your longer paragraphs into many SHORT ones and double space between each paragraph as you did above then we neuro folks will be able to comprehend and read what you wrote. big thanks; use my guidelines below in how to edit. hugs
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. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* 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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I started off with the doxy/rifampin combo. That combo did a LOT for me--took away much of my joint pain, fatigue, numbness/tingling, fevers, etc.
What it did not take away,, and what began getting much, much worse, were my visual symptoms--I have/had many of the same things you have, plus I am losing vision in my left eye.
My LLMD took me off doxy and started me on amoxyl to try to hit whatever is going on in my eyes.
Unfortunately, it's really not doing anything for me, and I seem to be getting some of my other symptoms back again.
But back to your original question, I think the doxy/rifampin combo was a good one for me, although it did take a few months to see improvement.
Do keep in mind that everyone is different,a nd the same combo that worked for me may do nothing for you.
Good luck, and welcome to the group!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Rifampin/Zith is working for me. Immediately helped with Neuro symptoms but then again, I was on 2 yrs of Doxy and Zith before that.
Rifampin treatment for Bart should be 6 mos minimum. You don't want to go on and off that drug.
Posts: 770 | From USA | Registered: Jul 2006
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posted
Rifampin was VERY hard on me!! I wouldn't have been able to tolerate doxy AND Rifampin, I know that.
I hope it works for you and that you are now on the right track!! Be ready for some herxing!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Myco,
I want to ask why you should not go on and off the Rifampin? I was on it for 2 weeks and had an extremely bad reaction. My doc took me off of it. I now wonder if it was hitting my Bartonella and may consider going back on (with docs approval of course) in smaller dose.
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