So confused and anxious and mad.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 6:59 PM (GMT -6)   
My PCP told me I have Lyme disease and then just emailed me this:

So one of our "go to" doctors for Lyme reviewed your chart and labs and she does not have a concern for Lyme disease and you can stop the Doxycycline. They are not concerned for this. Let me know if any questions. I know this is frustrating but great news they aren't concerned for Lyme disease -Dr. Raglan

These were my results:
IGG P66 AB.Present 
IGG P41 AB.Present 
PIGM P41 AB.Present
IGM P23 AB.Present   
Lyme IgM InterpPositive   
Western blot was positive

Symptoms for 4 years. So frustrating...so, do I really not have Lyme now??

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1387
   Posted 6/18/2017 7:05 PM (GMT -6)   
My test was similar outcome to yours and my PCP told me the same thing. I didn't quit doxy.

You have Lyme. Don't quit doxy. What dosage are you on?

BTW, I have Lyme.

You need a llmd. We can help you find one.

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 7:10 PM (GMT -6)   
I have an appointment with LLMD July 21st. I haven't starred doxy. In the last 2 weeks I had cellulitis, a yeast infection, a cold sore...so once I'm off the 6 pills a day antibiotics for this junk, I was going to start it. I was on doxy for my skin every other month for about 8 months and quit that a few months ago, but I am going to start it again. I don't understand why they would say I don't have it... are those not considered positive results? Or do I have something else Maybe?

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 7:13 PM (GMT -6)   
I just want to swear. I'm so freaking irritated.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3695
   Posted 6/18/2017 7:20 PM (GMT -6)   
lpaiges23, they are constantly getting pressured to try to lessen the loads of people who are infected by dismissing our test results. Positive test results are hard enough to get without this going on.

Even CDC still says SYMPTOMS should be considered .....foremost? That I couldn't swear to right now. The more people that are coming up infected, the more the CDC tries to sweep the cases under the rug. Hide us.


Read some of the links Traveler has posted about the CDC. That's just a start.
Watch the movie "Under our Skin". This will explain why they are leaving us in the dust.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl since June '15, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves. Bragg's ACV, lemon water, Herbal de-tox tea.

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 7:39 PM (GMT -6)   
I am downloading it now. It's all so corrupt. How bizarre. Thank you for your responses. I wish I could sue them, this is so wrong to do to people.

goshawk
Regular Member


Date Joined Sep 2016
Total Posts : 434
   Posted 6/18/2017 7:43 PM (GMT -6)   
lpaiges23,
It is just unbelievable how incompetent those doctors are. They should be ashamed of themselves.

I certainly understand your frustrations and I hope you have a better outcome when you have your llmd appt in July.

I truly wish you the best of healing and just keep moving forward with getting the proper treatment that you know you deserve.

Take care, Jo

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1387
   Posted 6/18/2017 7:44 PM (GMT -6)   
We all wish we could sue them. Alot of suffering. But you found us and this is good!

I'm glad you are going to a llmd.
Let us know what they say.
Moderator, Lyme Forum

Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast and leaky gut

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 7:49 PM (GMT -6)   
I will. I just don't get it.

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/18/2017 7:52 PM (GMT -6)   
Thank you all so much. I seriously can't tell you enough, I'm so thankful I found you!!

Jinna
Regular Member


Date Joined May 2017
Total Posts : 179
   Posted 6/19/2017 12:25 AM (GMT -6)   
I wonder how you are going to sue these guys if lyme has not positive result proof, I mean, not any blood exam that is 100% surely a proof that you got lyme, that is accepted by all...

anyway, one thing I learned after looking for help in 3 countries in Europe, where I live, and getting NO HELP at all, was the following:

Even if I arrive to convince them that I had lyme, what help could they give me? A couple of weeks of antibiotics and told cured?

People who can barely diagnose you for lyme, even open minded doctors, are in TOTAL loss when it comes to treatment of lyme. Treatment of lyme can be extremely complex, and practitioners need many years of experience to come with good results.

So, just give up on THEM, I mean, on these duck doctors. You may try to sue them, but meanwhile, look for competent help. People here surely can try to help you find help. Insisting on treament, begging for treatment brings almost nothing in case of lyme disease, because you'll need months of treatment and someone that is very knowledgeable.

don't put your hope on duck doctors. It's loss of time and money. Give up on THEM. They don't deserve your money, nor your attention.

Post Edited (Jinna) : 6/19/2017 12:28:30 AM (GMT-6)


lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/19/2017 2:04 AM (GMT -6)   
Jinna- good points. Not really planning on suing, more facetiously wishing I could. Being from Europe, what do you think of CBD oil or cannabis to treat lyme?

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4037
   Posted 6/19/2017 2:29 AM (GMT -6)   
i saw 33 docs had two positive tests and no one would treat . a rhuemy gave me sent me to a a id doc who would not treat lyme said it was a false positive

your test show you have a immune response to borrelia ! you have lyme ...regular docs are useless,even some llmds

and borrellia never travels alone usually gram negative and protozoa also come with it ..here they only give 30 days of treatment ..better off going for skin stiff to a derm and they will give abx for eva...i found bvt , rife and herbs to be most helpful with iv antibiotics ...forgive them they know not what they do

lpaiges23
Regular Member


Date Joined May 2017
Total Posts : 30
   Posted 6/19/2017 7:40 AM (GMT -6)   
Thank you. I agree, its a case of lack of knowledge. How dangerous is that though? Man, the frustration i feel is beyond measure. im thankful that i am going through this and not one of my children or someone i love...i would lose my marbles. Such a mess of misinformation.

love, blessing and peace to each of you as your journey through this mess. we will prevail though!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35211
   Posted 6/19/2017 7:51 AM (GMT -6)   
Unfortunately, your story is not uncommon in the Lyme world. That's usually what happens when one of us sees a doctor that is trying to still rely on IDSA standards for treating these infections.

Find a LLMD that follows ILADS treatment guidelines that can treat you. We can likely help you with this if needed.

You can also take this questionnaire and present the doctor with the information: www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

I was passed around for 40 years until I finally made my own appt with a LLMD and was able to confirm I had these infections, even though I couldn't test positive and get into treatment.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 25, 2017 8:09 PM (GMT -6)
There are a total of 2,830,716 posts in 310,714 threads.
View Active Threads


Who's Online
This forum has 152791 registered members. Please welcome our newest member, Macale.
388 Guest(s), 16 Registered Member(s) are currently online.  Details
Kev9412, jerseyguy1, Purrrsiankitty, FearBug, chrisespo, mm57553, RichardNY, ByeByeUC, magoo2, BJD55, Ljm2014, om118, InTheShop, Uriah, RobLee, PDXtransplant


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer