posted
I hope someone can help me with a few questions I have. This is a long post, so I'll start with my husband first:
He had a positive Spec Scan a few months ago that showed severe brain inflammation due to late stage Lyme.
This test was ordered by his LLMD. He had been (and still is) suffering from persistent head pressure and a few other symptoms for over a year before the Spec Scan was done.
His LLMD has him on IV Rocephin and oral Zithromax. He has been on these two combos for about a month now, with not one bit of improvement, nor any herxing whatsoever.
Has anyone reading this ever had head pressure issues that took many months to resolve with ABX? Or does he maybe need a different cocktail of ABX?
He's getting frustrated-but his LLMD said not to expect any improvement at all until at least 3 months minimum. Any thoughts here would be appreciated. Now to my sister:
She has had every test possible done on her. We both thought she had MS, as did her doctor, but her brain MRI was completely negative.
She has had bloodwork, ultrasound, etc. and is suffering from terrible symptoms that are a lot like MS-or,from what I've researched, are clearly indicative of Late stage Lyme.
Her only positive was band 41 Igg on a WB test.
She suffers from random symptoms-various burning on different body parts that come and go, stabbing knee and ear pain, light sensitivity, dizziness, muscle fatigue and achiness(so bad she thought she had Leukemia-tested negative.
She also has- migraines, vision problems, and some sort vaginal bacterial infection she's had now for over a year that she can't get rid of nor can any doctors give her any answers for.
The only time it clears up is with ABX (she takes Doxy-clears her up, then comes back again when she stops the med.)
She also has a weird upper left ribcage burning sensation(pretty constant) that was checked out by ultrasound, and of course, came back negative for anything.
This also cleared up on Doxy-now it's back again, since she stopped taking the med. Very strange.
She has an appointment with an Lyme Literate Nurse Practioner next week to have Igenex Bloodwork done(she can't afford an actual LLMD-the Nurse Practioner treats Lyme Patients for a much cheaper fee.)
She hopes to gets some answers from this bloodtest, as she's really miserable. She thinks she's dying because she feels so bad most days.
I keep telling her to hang in there, that hopefully the Igenex testing will give her the answers she needs.
Does this sound like Lyme symptoms to anyone?
It sure does to me, from what I've researched.
Also, why would she feel better symptom wise on the Doxy, (although she was pretty dizzy and nauseous while on it,) and a few days after going off it, her symptoms come back and get worse?
Neither of us can figure this out. Any input here would be very helpful as well. By the way-
This board is wonderful-full of supportive, caring and knowledgeable people, especially people like bettyg, who go to great lengths to get the info people so desperately need about this illness.
This board has been so very helpful in answering questions I have had in the past, and certainly will have again in the future-Thanks!
[ 02-09-2009, 07:09 PM: Message edited by: donaldmn ]
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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bettyg
Unregistered
posted
donald,
please break up your entire posts into SHORT paragraphs for us neuro folks so we can read and comprehend what you've typed ok.
use my guidelines below ok! thanks; if you send me a private message, it's my 1st box to right of my name here, and include this link.
i'll read your broken up post; nap time calling me really bad!
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
your sister's symptoms are what I had before Lyme treatment. I was labled as having MS for 17yrs...turns out I have lyme & bartonella.
When I first began lyme treatment I couldn't go very long (few days) before symptoms returned.
Best wishes to you & yours...may 2009 be the year of healing for your family.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I felt like your sister. I would always feel better on antibiotics. I would feel bad after about 5 days of being off of them. I went off every drug I was on for chronic fatigue, got really sick, ruled out everything and finally tested positive for Lyme with Igenex and bartonella and babesia through MDL lab in NJ. I felt like I was dying also.I would pursue the Lyme treatment. I only felt ok on antibiotics.
Posts: 30 | From pennsylvania | Registered: Jan 2009
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bettyg
Unregistered
posted
dawn, thanks so much for the nice compliment and breaking up your text; wow, you have alot going on of your loved ones; don't you?
sorry, i have no experience with your husband's meds. each of us reacts so differently and it takes TIME for some things to show up; vs. those of us who react PROMPTLY TO EVERYTHING! go figure?
HEAD PRESSURE ... i've read of others having that problem. i'm going to recommend you edit your subject line ok by clicking on pencil in your top post. 3rd box to right of your name ok:
hubby has head pressure; do you; tips to relieve it! Sis to get WB blood tests soon.
when done, click edit send; have you also gone to lower left corner and marked box to receive all replies to your post? do it before sending ok xox
from your descriptions of your sister, sounds like lyme and bart or babs. i don't have the co-infections and get them MIXED up each time but 1 is specific for SENSITIVITY TO LIGHTS, which i have terribly!
her western blot will show up several things from your descriptions. at least she has someone working with her on her NOW; one she can afford.
if you didn't get this earlier from me, i'll resend it now ok, and you all can do more reading for both situations!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks! *************** please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's 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.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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. *******************************************
go to top of MEDICAL and print off LYMETOO'S POST ... DR. C'S EXPLANATION OF WESTERN BLOT
it's very informative, and you can compare your husbands and your sister's to it when she receives her results in about 1 month!!
circle their POSITIVE/INDETERMINED nos.; read the comments after those circled numbers .... over and over until some of it sinks in.
posted
Thanks everyone for the good info-I've always suspected my Sis has Lyme, and she does too. Her WB 41Igg was the only band present, as was my Hubby's, who also has Lyme.
I hope her Igenex testing gives her the answers shes needs-even though I realize that none of these blood tests are 100% accurate all the time in diagnosing Lyme.
My hubby is staying positive while doing his IV meds, and thinking of a healthier life someday in the future. Thanks again-I'll be posting here often.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Has anyone reading this ever had head pressure issues that took many months to resolve with ABX? Or does he maybe need a different cocktail of ABX?
Yes I had those hedaches if thats what they call it but it was more like my head was going to explode it hurt really bad even when blinking my eyes forget walking it was unreal each step felt like a explosion in my head. My LLMD called it lyme induced encephilitis.
I took pain meds alternating between motrin ,alieve,and vicodin it took close to 3 months where it became more barable then for a year i would get headaches on and off some sorta cloud like some pounding but you have to keep after it with the acetametaphen . Watch thow when getting off the acetametaphen I had withdralwes restless leg syndrom cold turkey lasts about 4 days weening off is easier but takes longer.
The drugs that seemed to help abx wise were minocin,doxy,good doses of clean water.
I think the 3 months thing is a continual herx reaction he probaly has two strains of lyme like me and numerous coinfections bart babs.
-------------------- 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.
posted
I can relate to both of your family members. Misdiagnosed with MS for many years. Finally dx with lyme and co's, severe encephalitis.
The head pain was unbearable at times, felt like my head would explode.
Have not been able to get IV so far, but my cocktail of abx has helped immensely, ammox, rifampin, biaxin, plus supplements, placquenal and now lyrica (we think that the swelling in my brain is causing seizures) Head pain did not improve until the rifampin was added.
Herxing was horrible, but I perservered. Best of luck...
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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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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