HealingWell
Search Close Search
☰

Long story, not sure what is happening.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/19/2012 3:37 PM (GMT 0)
I'm Beth 33 yo mother of 2. I've been throught the ringer for the past year, so I will start at the begining of all this nonsense. Last year in June, I found a deer tick on my inner thigh (I live in ocean county NJ, high occurance of lyme). I removed the tick, cleaned the area and kept an eye on it. Couple days later it became very red and itchy, and the area increased in size. Went to my GP and she ran a plethora of labs including WB. Results came back IgG negative 0 positive bands, IgM 23 Ab positive. My doc didn't want to take any chances and prescribed doxycycline. I completed the cycle of antibiotics and felt ok (although I felt extremely terrible while taking them).

March 2012. Back to my GP for increase of frequency and severity of migrane headaches, fatigue, blepharospasm, joint pain, weakness in arms, legs, heart palatations, anxiety ect. Reffered to a neurologist. MRI revealed a small lesion near the basal ganglia. Follow up mri to be preformed November 2012. Prescribed nadolol 20 mg a day to prevent migrains (and it is working).

July 2012. (Bitten again by another deer tick July 2) Back to GP. Trouble swallowing, feeling a lump in throat for 2 weeks. Irregular menstral periods for 3 months. Chronic constipation, unexplained weight gain. Fatigue, cold blue hands and feet, anxiety, eye spasms getting worse since March, body aches, hair loss, pain ringing clicking in ears. visual disturbances, back pain. Thyroid enlargement. Thyroid ultrasound and more labs including WB. U/S report : Diffusely enlarged thryroid, heterogenous echotexture. Enlarged isthmus. 2 CM dominant moderately vascular nodule in right midpole. Suggest Fine Needle Aspiration cytology.

August 2012: FNA Complete. Paucicellular sample, inconclusive. (thyroid panel normal). Repeat U/S and FNA January 2013.
Labs WB: IgG no banding present. IgM: IgM P41 Ab present Abnormal. IgM P23 Ab Present Abnormal. Lyme IgM WB Interp. Positive Abnormal.

September 2012: Trip to ENT surgeon for laryngoscopy (dysphagia) and to schedule FNA. I now Have GERD as well.
GP: 9/17/2012 Double ear infection. ENT suggested treatment for lyme. GP wants me consult with an Ifectious disease specialist. Unsure if I have lyme because IgG was negative and IgM was positive. ( possible autoimmune disorder?)

At this point I just want to cry all the time. I don't know what is happening to me, I was always pretty healthy never took medications. Now I feel like crap all the time. Am taking beta blockers, nexium, antinflamatory drugs, and anti anxiety meds. I don't know if I have lyme, lupus, MS, and now thyroid cancer. Maybe It's a combination of things. Can you have lyme if the IgG is negative and IgM is positive? I tried making appointments with LLMD's in my area and they do not take insurance. They also want payment at time of appointment, and I do not have that kind of money. Can anyone please help me?

Posted 9/19/2012 7:29 PM (GMT 0)
Hi Bethany,
I'm so sorry to hear of all that you have gone through! Yes, it is all very scary!!

Depending on the dosage of those first abx and how long you were on them, you may not have had enough treatment to get rid of the infection(s). This could easily be more than just Lyme Disease as well, since ticks carry all kinds of diseases. Having Bartonella or Babesia will often prevent healing from Lyme disease.

You will need more treatment, if there is no way you can afford to get in to see a LLMD (some borrow money for treatment or ask a relative), then there are herbal/natural protocols that you can use - at home - to treat yourself that work quite well. Although you will have to be disciplined so that you use them as you should and in the way you should.

To look into the natural/herbal protocols, here is a link that will take you to the more common protocols used: www.lymediseaseresource.com/Protocols.html

I would caution you to not use the Salt/C protocol as it's not very well thought out in my most honest opinion. Large amounts of salt like that will harm the body, among other issues that I have with this protocol.

The ones that have been used many times over, with good success and were developed by highly experienced Practitioners are the safest to use, like Buhner's, Zhang's, Marshall, Klinghardt, & Cowden protocols.

If you would like to check into more LLMD's in your area, just in case you can find one that will work with you on payments or something, let us know, as the Mods can share the list of LLMD referral sites for you.

I would suggest that if you haven't already, please start by reading through our "New to Lyme? Start Here!" thread. It's packed full of important information and links, as well as symptom lists, and even a list of questions to ask your LLMD or other Lyme literate practitioner.

We also have a really great search function here that can help you narrow down what threads will pertain to you and your specific set of symptoms. In order to stick with just the threads from this forum, all you need to do is to type the word "Lyme" before entering the other search terms.

We can most definitely help you get through all of the information, answering at least some of your questions, help direct you to find more information, and to be here to support you as well!!
Posted 9/19/2012 9:58 PM (GMT 0)
I did the doxycycline 100mg cap 2X daily for 21 days. There is a very reputable LLMD in my town, that I have tried to make an appointment with. She does not do payment plans. Payment is due at time of visit. A $100 dollar deposit is required to hold the appointment. Visits start at $350 + lab fees. I do not have anyone to borrow money from. Do I need further testing or is the positive IgM enough? about how much do labs with Igenex cost?
Posted 9/19/2012 11:27 PM (GMT 0)
Bethany,
It would probably be less confusing for you to keep one thread at a time going, don't you think?

I really sorry, but 200 mgs of Doxy a day isn't enough to kill the bacteria, it's only enough to keep them from replicating. So you now have chronic Lyme so that you know as you read through all of this information.

You don't need the tests, as they aren't very reliable - even though you have a positive WB. There are many things wrong with the testing of these infections that I can go into if you would like, but you already have a positive.

It would be best for you to have a Holistic practitioner or a Lyme Literate practitioner to help you decipher what is what, but it's not necessary. There are quite a few people here that are 'going it alone', although I believe it's much easier to have a practitioner to help you figure things out.

From what I understand testing through Igenex runs around 3 - 400 dollars, just for the basic Lyme panel. Although, as I said you already have a positive, so more Lyme testing is completely unnecessary. I'm not sure what the cost of the other tests are, although they aren't all that accurate either. There are over 30 different strains of Bartonella, and there are only 3 or 4 being tested for. Babesia testing is similar.

Good Lyme Literate Practitioners will diagnose clinically (by symptoms), making those tests not so necessary.

There may be more than one LLMD in your area, so you may want to check, just to be sure. For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 9/20/2012 1:38 AM (GMT 0)
Thank you very much for the insight.
Posted 9/20/2012 2:22 PM (GMT 0)
You're welcome, Bethany! That's what we are here for, to help others learn how to survive these infections and get through treatment!! Don't hesitate to ask other questions as they come up! smilewinkgrin
Posted 9/20/2012 3:45 PM (GMT 0)
In addition to Lyme treatment, you might want to research iodine for your thyroid issues. David Brownstein's work is interesting in that regard. Here is one article that kind of gives the basics: http://www.vitamincfoundation.org/iodine.htm
Posted 9/20/2012 9:57 PM (GMT 0)
I have an appointment with an infectious disease specialist next week on wednesday. He practices at the hospital and is supposedly a Lyme specialist. Wish me luck on that :) . As far as my thyroid goes, my lvls have been flucuating a bit. all on the low end of normal. I guess I am just going to have to wait on that until January when I go for ultrasound and FNA. Thank you everyone for your help and support.
Posted 9/20/2012 10:13 PM (GMT 0)
Bethany, seeing an ID doc isn't really in your best interest. They all claim to be Lyme specialists, but they don't believe that chronic Lyme exists, and they believe that a short course of low dose abx will clear the infection(s) - that's if they don't tell you that it's just anxiety! That's what most are told by ID docs, to go home and rest or seek out a Psychiatrist.

You need to find a doc that believes in evidenced based medicine. That's why we always recommend seeing a LLMD (Lyme Literate Medical Doctor). If they are worth their salt, they will have been trained by the ILADS (International Lyme and Associated Diseases Society) standards. They are all trained so that they understand the strength of abx to use, and what to watch for to know that treatment is no longer needed, not to mention they will do a clinical diagnosis, and should know how to help you get through your treatment with some supportive care.
Posted 9/21/2012 2:49 AM (GMT 0)
I think I have found a doctor to treat me. I used one of the Llmd searches and found a doctor not too far away, is a Iliads member, and participates in my insurance plan! OMG thank you a thousand times for pointing me in the right direction. I am going to try and get an appointment in the morning. Thank you thank you thank you!
Posted 9/21/2012 1:27 PM (GMT 0)
Back to the drawing board. He is not accepting new patients.
✚ New Topic ✚ Reply