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shelliboo73 Posts: 67
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I just got my Igenex tests back and my LLMD said I was negative now but exposed to it prior. My main symptom now that is destroying my life is a nonstop headache for 7 months. He suggested to give the new neuro meds a try for one month and then if no luck that we could try IV antibiotics since I have been exposed in the past. Of course, he doesn't know if this is what is causing the headache or not. I am very confused. What does not having it now but being exposed to it before mean? Has anyone had this result? If so, has anyone had any luck with treatment? Thank you. God bless you, Michelle
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Weasy Posts: 943
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Not having it now but being exposed to it means this.. Your body still produces antibodies long after the Lyme bacteria has been eradicated from your body. I assume because not enough antibody bands came back positive on the test, your doctor assumes it's an just an implication of a prior infection. The truth of the matter is that any test that uses antibodies to test for Lyme Disease is flawed. They're flawed enough that they could continue to come back negative despite one having full blown Lyme Disease. The reason for this inaccuracy is due to the Lyme bacteria being more evolved than our own immune systems. The bacteria capable of hiding from the immune system (antibody producers) in a biofilm or in cyst form. It can also drill itself into white blood cells (antibody producers). When white blood cells become infected, they lose their ability to produce antibodies according to Dr. Mercola. So the truth is that you may likely have a full blown case of Lyme Disease but the lack of some knowledge your doctor possesses may be putting you at risk of avoiding the appropriate treatment. tiredoflyme.com
Lyme Disease Support & Consolation
Treatment: Buhner Protocol
Initiated: 08/15/2012 |
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shelliboo73 Posts: 67
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Thank you for your response. I do see a LLMD who wrote a book on Lyme. My testing was through Igenex. He is willing to try me on IV antibiotics if my insurance covers it just to see what happens I guess. I'm willing to do anything to get rid of this constant headache. God bless you, Michelle |
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GlitchyMomma Posts: 283
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I hope you find relief. Why would you start on IV antibiotics? Just wondering because only 1% of my LLMD's patients are on IV antibiotics. Maybe it's just me, but I'd want to exhaust oral antibiotic remedies prior to getting a picc line, which opens up the risk for more complications. After 3 weeks on doxycycline my headaches have gone away (so far). I still have other neuro symptoms, so my doc is changing me to minocycline which is supposed to be good for neuro. My first dose will be tonight. Post edited by: GlitchyMomma, at: 01/31/2012 10:51 AM GlitchyMomma
I am not a doctor, nor do I play one on TV. All comments are based on my personal experience or opinion.
______________________________
Only major "bites" I remember were chigger bites in June 2000 and flea bites in early 2001.
First weird symptom was a panic attack w/ tachycardia in 2001. My husband brought me to the ER, and I was released when everything showed normal.
~June 2001 - Possible VERY early miscarriage, 10 EPTs were positive then I had a heavy menses a few days later. ER said I was never pregnant.
Hashimoto's Thyroiditis dx July 2003
Cholecystectomy March 2010
Vit D3 Deficiency 2011
Progesterone Deficiency 2011
Adrenal Fatigue September 2011
January 2012 Labcorp: IgG 41 Positive, IgG 18 Positive, IgG 23 Positive, IgM 39 Positive, IgM 41 positive
CD57 - 32
ABX: Doxy 28 days, Minocycline 30 days, Ceftin 37 days, 4/16/2012 started Azithromycin |
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jomomma Posts: 372
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What about co infections? I know the 1st LLMD I was seeing told me coinfections were over dx. WELL, hog wash because the new LLMD I am seeing is treating for bartonella and with a herx from the bart meds for my whole family caused a worse headache at 1st then it started to alleviate it in all of us. SiCk & TiReD oF bEiNg SiCk & TiReD!!!!!!!!!! ;) |
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irenwill Posts: 1849
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Hi shelliboo -- I am with jomomma - coinfections are likely. That headache sounds like babesia to me. I went for almost a year and a half with a pretty constant migraine. It was hell - I spent 20-25 days a month in bed, wanting to cut my head off. Regarding the negative now, but exposed prior: positive IgM (or bands) on Western Blot indicates a more recent infection, positive IgG (or bands) indicates a longer term infection/exposure. I'm going to refer you to Dr. C: http://www.mdjunction.com/lyme-disease/articles/dr-cs--
western-blot-explanation---lyme-facts "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." Hope that helps I am not a doctor, just a patient striving for recovery and hoping to offer support to others, too! Many blessings to you!
Any information offered is just sharing my experience and friendly advice, NOT a prescription. You should use your own judgment and discretion when making health care decisions. |
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Bettyg Posts: 26526
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shelli,did you read dr. corson's HEADACHE DETAILED ARTICLE in my welcome letter at top of support? you'll learn a great deal there. hugs/prayers, bettyg BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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shelliboo73 Posts: 67
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Thank you all for your replies. I was tested through labcorp for babesia which came back negative. He had put me on doxy for 2 weeks with no help to my headache at all. So...I started the picc line almost 2 weeks ago. IV Rocephin for 56 days. So far, no difference. I'm just a complete pain filled, anxiety and depression filled absolute mess. I pray something helps soon. Betty, I will read what you referred me to. Thank you all again. God bless you, Michelle |
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nank59 Posts: 803
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Coinfection tests are not very reliable, either. Diagnosis is often made based on symtpoms. If your LLMD has written a book on Lyme, he would probably be able to recognize if any of your symptoms are indicative of coinfections. My ND has noticed that numerous symptoms are not responding to the general treatment for Lyme, and that they are actually increasing - I have symptoms of Babs and Bart. She wants to tackle the Babs first. Do you have any other symptoms of Babs other than the headaches? nan
I am not a doctor, nor have I ever been. All comments are based on my personal experience or opinion.
IgM
41+
IgG
41+
31 IND
39 IND
Currently treating Lyme & Babesiosis.
Have many Bart symptoms.
Blessings! :) |
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shelliboo73 Posts: 67
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Nank59-my story is long but I'll try to make it short. In 1999 while under severe stress and pregnant with my 2nd child, I came down with a horrible, constant headache, severe dry eyes, spine pain, shooting pains in my limbs, tmj, breast pain at times, tingling, bells palsy which is what I can remember at the moment. Most of the symptoms didn't take too long to clear up except the constant headache stayed for two years and I still wear a splint for tmj and I have punctal plugs in my tear ducts for the dry eyes still. I had MRI's of spine and head, bone scans and everything came back ok. I also had a western blot for lyme-negative. The headache eventually left and I was doing really well...until 2002...the headache came back and stayed for a year and a half to two years. I started on some neuro meds and walked an hour a day and it seemed to subside well. I thought I had beat this headache disease because from 2004 until this june 2011, I was almost headache free. It was heaven. I now have had this constant headache for almost ten months. I don't really have any other symptoms except SEVERE anxiety and depression and can't sleep all due to how terrified I am that this won't go away. I don't know how I will work, take care of my family, enjoy my family, etc. The LLMD didn't seem to think I have co-infections. I'm not even sure I have lyme. My brother pushed me to get tested because of my symptoms in the past and the headache I have now but when it came back that I had it prior but not active...I was once again disappointed because no one can help me. What does your 30 and 39 IND mean? Thank you. God bless you, Michelle |
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