posted
ok so I was just diagnosed due to vertigo and issues remembering names and such. "im only 29). I went into the docs office and my cousins who I visit frequently contracted Lymes over the years and we lost one of them due to the lateness in diagnoses and it turned to lupus.
Anywho all of my cousins were hospitalized, so im the first just getting pills. my doc stated that I tested posative with the first test then the western blott test I had one of the three antibodies. She said that you needed two out of three but being that it may lay dormant and my symptoms, she is treating me as if I have lymes.
The question is Im on doxycycline hclate 100mgs X2 What am I in for? How sick will I get? What are the side effects. What should I prepare for?
Posts: 35 | From Baltimore | Registered: Jul 2009
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bettyg
Unregistered
posted
welcome bh
the below links will explain some of this to you. each of us is UNIQUE; no time alike so it will vary how sick you get, etc.
your antibiotic pharmacist should give you a handout on the ABX and it will explain side effects and what to look for ok!
if not, go to NIH's med library, www.medlineplus.org and copy the name of doxy name there and look at the MED info; it's user-friendly ok
i'm sorry to read of your cousin's death; we share your loss even though we didn't know them.
what was your cousin's name? in SUPPORT, there is an OBITUARY LYME post, and we add their names/obits as they come up.
if you would have access to an online obit for them, would you post it in the obit post? thanks so much.
if others are reading, hit your END key now to go to bottom to see if others have posted after my LONG post for our newbie ok ***********************************
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
EYE SENSITIVITIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. http://www.marshallprotocol.com/forum2/4.html detailed!
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE, ONE YEAR GUARANTEE!
mention you have lyme and marshall protocol, they will give you 10% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service? I'VE NOT had to return broken/scratched lenses!!
In fact, I have a terrible time where they drop to the floor, and 1 of bows will break off the connecting PLASTIC piece connecting to the lense itself. They just take the info over the phone from YOUR STATE'S REP!
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
EVE PROBLEMS ...NOT ABLE TO SEE; Tincup, 7.20.09 I had inflammation and eye problems from Lyme... from which I was declared to be legally blind due to the damage caused. May I suggest?
Rather than waiting to do steroids for the inflammation from uveitis, etc... and ONLY because you can't find anyone right now...
This is what I did which worked VERY well for me... recommended by one of my docs.
Vitamin C
Wobenzyme- 3 per day
Querectin- as directed on bottle- max dose
Bromelain- as directed on bottle- max dose
Vitamin E- max dose recommended on bottle. ``````````````````````````````````````````````` I know.. that sounds too simple.. but it has wordked for me and others.
These supplements have anti-inflammatory properties and I was actually found to do better on them than the steroid drops they prescribed .. [doc thought I was doing the eye steroid drops when rechecking me several times].
My eyes cleared up faster than they would have on the steroid drops. I think I took this combo for about 6 weeks.
If I feel problems coming on... I start the protocol again. I MUST say you need to check with a doctor before doing anything I am posting about... as I am NOT a doctor. Hope this helps. tincup ***************************************
There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon". This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky) When a leukocyte travels through.. it makes a wiggling motion. The link below is v\ery interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"
Eye pressure up to 29 may be normal. Not a very good test for glaucoma. Better to look for dammage to optic nerve (visual nerve) with dilated exam. When in doubt, a threshold visual field test (painless but boring) can be done to detect early glaucoma.
Other reliable tests that can help pick up glaucoma include corneal pachymetry and gonioscopy.
I agree that optic neuritis is a much greater concern with Lyme than glaucoma, but of course the possibility of glaucoma still exists in everyone.
If you're quite concerned about glaucoma, easiest way to rule it out would be the visual field route. Maybe ask a glaucoma specialist for a second opinion.
NOISE/SOUNDS .... MAGNESIUM by Carol in PA, 7.3.09 Supplement with magnesium to help hypersensitive hearing.
The Lyme bacteria use up our magnesium, causing a deficiency. A number of Lyme symptoms can be helped by supplementing with magnesium.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Welcome!
There is soooo much to learn, so start reading!
Starting with Dr Burrascano's 2008 guidelines is a very good place to start.....bettyg listed the link near the beginning of her post.
You will also benefit from going to the Medical Questions board and posting questions there, and reading posts there.
Sounds like you need a good LLMD. Your doxy dose is low, and you may have tick borne coinfections also.
To prevent a lifetime of misery you need proper treatment now....a good LLMD.
If you have not posted on the Seeking a Doctor board, you should do that.
There are good LLMD's in the northeast.
-------------------- 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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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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