I just tested positive for lyme on thursday , after almost 2 months of doctors visits, er visits and out of work. I never had a bullseye or anything, but i do remember that after i went apple picking with my boyfriend in october, come novemeber i started getting sick with flu symptoms. The pain got worse on new years eve, and since then has gotten even worse on somedays, to okay. Right now my right knee is swollen, and some joint pain. The funny thing is the 4th time i went to my primary doctor, they prescibed me biaxin (they thought i had the remainder of the flu), but i had a hard time sleeping on it. So i stopped taking it, an wound up in the er. I don't know if it was psychological that i was making myself think that the meds were making me feel weird. So now my pcp prescribed me 100mg of doxy 2x a day. I am going to a rheumy on tuesday, i know i should find a llmd, but my insurance is covering my visit and he supposedly is good in lyme. Any words of advice, or suggestions!!
Allie
Posts: 6 | From philadelphia | Registered: Feb 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If the doctor does not know details about Lyme, run (don't walk) to find an LLMD. This is your life we are talking about and no one will take care of it like you can.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Definately find a llmd your dosage of doxy is too low for lyme. Just post where you live and how far you are willing to travel and someone will help you with a llmd name. Good luck and peace to you.
P.S. I sent you a private msg on a certain dr in your area to watch out for.
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I dont live too far from you.
I would get to an LLMD....stop the Dr shuffle.
does your insurance reimburse you for out of network charges. If so then you can submit for reimbursement. They may not pay 100% but atleast it is something. Your life is worth it.
Trust me every hour of the day counts with this disease.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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liz28
Unregistered
posted
Memorize Dr. B's 2005 guidelines. They form the basis for nearly every treatment variation you'll read on Lymenet, and will make you much more savvy when you see an LLMD. Also, try and read through posts going back two years, even if it is irksome. All these treatments are undergoing a rapid evolution.
posted
Allie, WELCOME to this 24/7 support/educational board. You've come to the right place for advice, suggestions, and ACCURATE info. I'll post more stuff below.
Allie, those of us with neuro lyme can't read LONG continuous paragraphs like yours, so I've shortened them to 6-8 lines of text or shorter and DOUBLE space in between. Please do this in the future for us all so we may help you ok.
quote:Originally posted by aldejavu: Hi everyone,
I just tested positive for lyme on thursday , after almost 2 months of doctors visits, er visits and out of work.
I never had a bullseye or anything, but i do remember that after i went apple picking with my boyfriend in october, come novemeber i started getting sick with flu symptoms.
The pain got worse on new years eve, and since then has gotten even worse on somedays, to okay.
Right now my right knee is swollen, and some joint pain. The funny thing is the 4th time i went to my primary doctor, they prescibed me biaxin (they thought i had the remainder of the flu), but i had a hard time sleeping on it. So i stopped taking it, an wound up in the er.
I don't know if it was psychological that i was making myself think that the meds were making me feel weird. So now my pcp prescribed me 100mg of doxy 2x a day.
I am going to a rheumy on tuesday, i know i should find a llmd, but my insurance is covering my visit and he supposedly is good in lyme. Any words of advice, or suggestions!!
Allie
How did they diagnose you..with the western blot igg/igm blood tests and performed by Igenex, MD labs, or Bowen? They are the only TICK labs that test for all the strains and bands of lyme.
Here's TREEPATROL's and tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Allie,
First, I'm really glad you were able to find your way to these boards; they've absolutely helped save my life, and the people here are wonderful.
You've already gotten some excellent advice from previous posters. I mostly want to second what they've said and encourage you to get to a Lyme Literate Doctor (LLMD) as soon as possible.
And cant's right -- time is so important when you're dealing with Lyme.
There are some wonderful doctors in the area. I don't happen to have the list of LLMDs in PA and NJ, but if you post in the section Looking for a Doctor, I'm sure someone will get back to you with those names.
You're definitely on the right track; keep us posted.
By the way, I'd cancel the appointment wiht the rheumy if I were you. Chances are, you won't learn anything more, and it may just get you confused.
Also, you might want to start making a chart of your symptoms and keeping track of them. The Lyme Disease Association of SE Pa has an excellent chart on its website.
posted
I agree about getting a llmd. But a good one can take months of waiting to see.
But it doesn't hurt to get a free appt (Ins)and maybe some testing. Tell him (the Rheumy) you want to be tested for coinfections. If he says NO then run.
Some llmd's start you off on that dose of doxy esp if you are tiny. And then ramp up. Atleast keep taking it till you get more abx.
Don't forget to take acidophillus.
Posts: 399 | From Texas | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
One more suggestion, especially if you are having inflamation.
Diet! So important!!
NO SUGAR. This feeds the bacterias and they grow. Also, no dairy. If you have inflamation, you probably have a damaged intestinal wall and undigested food is escaping into your body. Your immune system sees this as a foreign invader and attacks it as well as the linings of your joints. I had to receive a diagnosis of Rheumatoid Arthritis before I learned of this connection.
I am now on a strick vegan diet which is working wonders with the inflamation. Be very diligent about sugar. Check ingredients of all canned, bottled and prepared foods. It is amazing what they add sugar to.
Diet alone will not get you well, but it will speed treatment along and will help with the inflamation. Also, by not eating sugars and simple starches, you starve the bad bacteria.
It costs you nothing (but discipline) to try this. Check out this website:
Your rheumy is probably not going to buy into the Lyme connection.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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BostonLyme2005
Unregistered
posted
Hi Allie,
I was on Doxy, 100mg's 3x a day for 6 wks, after my arms were almost burning off my body, after weeks of profound fatigue, sleep disturbance, etc.....
For 6 wks I was feeling better, not 100%, but better, even awhile after the meds ended....
Guess what?
All the symptoms returned....I had seen an I.D. Dr., waste of time, plus a Rhue Dr., another waste of time, well, she was very pretty!
Seriously, get to an LLMD soon. Ask the LLMD to contact you PCP and give you some Tetracycline 1500 mg's a day, (I am taking now)while you wait to get in to see the LLMD.
Amox. is good, but I am learning it wont kill this off, and I have taking it, so I know, at the dose of 1500mg's a day.
If you have Lyme, the Tetracycline will bring it out in the open and you will herx, but will also be moving to recovery!
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
It does take time to get in and see an llmd so maybe you can bring Dr. B.'s guidelines to your PCP because that dosage of doxy is too little.
I agree that the other doctors are often a waste and can stall you from finding an llmd.
Choose from the llmd suggestions you have received and make an appointment. Don't delay.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I use Dr Burgdorfer's protocal. Yep, as in Borrelia burgdorferi.
FROM "PENICILLIN TO "MILD SILVER PROTEIN" AN ANSWER TO LYME DISEASE "WITHOUT ANTIBIOTICS" By: Dr. William Burgdorfer, Ph.D. Rocky Mountain Laboratories, Division of N.l.H.
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