Still technically undiagnosed...few questions

Hello,

I am a 21 year old male living in Connecticut. I apologize if I jump around a bit, I'm going to keep this as chronological as possible; but as many of you know, it's hard to record medical history when you didn't even know you had the illness in the first place.

Last year (Aug 2014) I was hospitalized for what the doctors thought was meningitis. I never got a lumbar puncture so it was never confirmed; I eventually got better. That month was absolute hell for me. I was tested for Lyme then, but only the ELISA screening which was negative (which I know now was probably a false negative).

Looking back on my medical history, I have gotten sick (or flared up from Lyme) every 4 weeks since then (and perhaps before then - I'm not positive that was my initial exposure). I have also had a history of back problems that have never been figured out after a slew of MRIs and physical therapy.

In Nov 2014, I had lesions of ulcers break out on my scrotum. I had not been sexually active in over a year. I went to a dermatologist who suspected herpes. I was tested for HSV1 and 2 twice and was negative both times (to my relief). This "rash" has not come back since.

In Jan 2015, I began experiencing severe pelvic pain that extended into my perineum, left testicle, left buttock, and radiated down my left leg. I was hospitalized and had ultrasounds done on my testicles as well as kidney, ureter, and bladder. All came back normal. I was treated twice for epididymitis which did absolutely nothing. I have since self-diagnosed this pain as severe pudendal neuralgia (this seems to describe the pain very well). This pain continues to be severe today.

Mid July 2015 I woke up with a fever and all sorts of aches and pains (4 weeks after the last time I got sick). I decided this was the last straw and went to my primary physician and explained everything; including how my lymph nodes have been consistently swollen for a few months. He ordered up a bunch of blood work:CBC, ANA, Sed rate, EBV, CMV, all the normal stuff... except Lyme. I thought nothing of it since I did not know much about Lyme. All bloodwork came back normal. I also had a chest x-ray on my lymph nodes which came back normal.

He sent me to see a general surgeon to look at my lymph nodes. The surgeon did not recommend a biopsy and he sent me to an infectious disease doctor. While waiting to see the infectious disease doctor, my tonsils swole up more (I have always had very large tonsils) and developed white patches.

The infectious disease doctor claimed I had "no sign of infection." Recommended a GI to check for Crohn's and perhaps a rheumatologist.

I saw the GI who scheduled me for an MRI with and without contrast on my intestines as well as an upper endoscopy (both of which I have since postponed). He saw my throat and recommended I see an ear, nose, and throat doctor.

When I saw the ENT he took one look at my throat and said "well you have mono." He was also the first doctor to suspect Lyme disease after hearing my whole medical history (first one to actually listen, too). He ordered more bloodwork - retested me for EBV as well as ELISA and Western Blot. It is also worth mentioning that he put me on a 6 day cycle of Prednisone to bring down the swelling of my tonsils (I could hardly swallow or breathe).

My CBC came back slightly anemic and I had a high WBC count. Also, I was now positive for EBV (mono) and my ELISA was positive. My Western blot had 3 reactive IgG bands (23, 39, 41) and 2 reactive IgM bands (23 and 41). This is when I started doing research and found the problem I had - some doctors will believe I have Lyme, some doctors will say it was a false positive. My ENT seems to believe I not only have Lyme, but that it is CNS Lyme. He also suspects co-infections.

Here is a list of my current symptoms (though many are migratory and/or intermittent):
Malaise, fatigue
Low grade fever
Enlarged lymph nodes (submandibular, axillary, inguinal)
Drenching night sweats/day sweats
Weight loss (greater than 20%)
Pudendal neuralgia (severe)
Sore throat/tonsillitis
Apthous ulcers (have had these my whole life)
Headache
Pain/pressure behind eyes, red eyes
Joint pain
Itching
Neck pain/stiffness
Back pain/stiffness
Muscle spasms/twitches
Abdominal pain, nausea, lack of appetite
Constipation, diarrhea
Heart palpitations, chest/rib pain
Sleep cycle disruption (can't fall asleep before 3-4am)
Psych abnormalities (mood swings, irritability, depression, anxiety/panic attacks, crying without reason, trouble putting thought into words)

Currently I am only being treated with Omnicef (600mg daily). My ENT put me on this to get me by until I see the next doctor. My ENT (the only doctor who seems to care) referred me to another infectious disease doctor who I am seeing on Thursday, though I am skeptical. I would like to see an LLMD but it is just not in my budget.

Does this sound like classic CNS Lyme or could this all be in my head? Is Omnicef even a good treatment for Lyme? Has anybody had any luck at all with infectious disease doctors, or any doctors who are not LLMDs?

Thanks.

Post Edited (Teejay86) : 8/18/2015 10:09:42 PM (GMT-6)

Thank you for the reply Girlie. I'm glad to have found some support and peace of mind - after all these doctors telling me I "look perfectly normal" I have been starting to second guess myself a lot.

I filled out the ILADS referral and am waiting to hear back on that. The one LLMD in my area that I know of does not accept insurance, has about a 6 week waiting period, and charges about $600/hr. I assumed all LLMDs would be around the same; I did not know any accepted insurance. If anyone knows a local LLMD that does accept insurance I am all ears.

So are you suggesting that I should not be pursuing an antibiotic route? I honestly am willing to go any route at this point - I'm sick of waiting, I want to be living. I was assuming it'd be a combination of abx and herbal supplements. What reasoning is there for not using antibiotics? I could just be misunderstanding.

Yes, we often "look normal" - but feel horrible.

You can start a new thread titled: Looking for LLMD in/near_____that accepts insurance. Fill in the blank with your city/town and State.
I'm sorry I don't know enough about your medical system to say if you will find one near you accepting insurance.
You will need to enable your email...we can't post names of LLMD's on here for privacy reasons.

Some people do antibiotics, some do herbals (there are some people who just can't handle the antibiotics - it's too hard on their system), and many do both - a combination of abx and herbals.

You could start out with an herbal protocol...that's what I did waiting for my appointment. I bought the herbs and started a couple months prior to starting antibiotics. There are a few that you can do...that's for another post.

That is great that you have been researching....the more knowledgeable you become, the better off you will be...that is why this forum is so great - we are all in this together...and will help each other.

Here are a few known herbal protocols:

Buhner - link to website:

buhnerhealinglyme.com/

Cowden - link to website:


www.nutramedix.ec/ns/lyme-protocol


Byron White- link to website:

byronwhiteformulas.com/

I believe with Byron White you have to go through a Practitioner to get the products.

I've made a mess of the links...give me a few minutes...I'll fix them so they work.

lol it's late.

And some more reading for you...

When you have a moment, take a look at the thread at the top of the page titled: "New to Lyme?...Start Here!" it's full of good information - symptom lists, information on probiotics, detox suggestions, and more!

You will want to be knowledgeable on how to detox your body and start developing some good habits - as when you start treatment - when the bacteria dies-off, you will have an increase in symptoms from the overload of toxins in your body - called a herx. The detoxing will help your body flush those toxins out...thus helping to alleviate those symptoms.

okay - sorry to overload you...
Take a deep breath...and one step at a time...

Hi Teejay86!

I also live in CT and saw multiple doctors for many, many, months to no avail before figuring out Lyme was the culprit- it is so frustrating!

In CT NDs cannot prescribe abx (and many of the LLNDs do not take insurance), and like you said, the only LLMDs in the state do not take insurance, have a huge wait list, and yes, cost $600+ for a visit. I started going to an LLND who takes my insurance, but it's a 50 min. drive for me (I live in Hartford). He has worked with lots of lyme patients, so I feel that it is worth the drive, and at least the insurance pays for the doctor's visits if nothing else. I also wanted to try going the herbal only route, at least to start out with.

As for an LLMD, I found one in Northamptom, MA, so a hour drive, but he takes insurance too, so once again, at least the office visits are covered. And I have the option to go the abx route if I decide to at some point in treatment.

If you would like me to send you the names, let me know. :)

Teejay, if you like to read I highly recommend " Why Can't I Get Better" by dr. Richard Horowitz, great amount of info about Lyme , confections and treatment and not difficult to read.

Hi Teejay!
Just popping in to say hi, since you have already been given a lot of really good information!!

I'm someone who healed using only herbals, as I couldn't tolerate the pharma abx.

I would also like to throw out that from the list of symptoms you have put up, I would say that you are likely dealing with at least EBV, Lyme, Babesia and Bartonella, and maybe more. When Lyme and Bartonella are together, they often cause more extreme Neuro symptoms.

And I wanted to say YOUCH!! I understand that pain with the Pudendal neuralgia. I would also get 'shocks' of pain in that area too.

I don't know which doctors take insurance or any of those details, but ​you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

And let us know how we can best help you!!

I was infected for 40 years before I had adequate treatments, so I still get twinges once in a great while, but otherwise, yes. Same with the psych issues that I had.

Lyme is notorious for attacking nerves and destroying it's protective covering - the myelin sheath. Bartonella is also very hard on the nerves and nervous system.

Chances are pretty good that as you get further into effective treatments for any of these infections that you have, the less pain you will have.

And you can start detoxing now, as that helped me as well. Once I figured out what all I had to do to get more toxins moved out of me, my symptoms all lessened in severity.

Are you on probiotics? They are a necessity.

If you do Buhner - here are some recommended sources of the herbs:

Green Dragon Botanicals (for capsules)

www.greendragonbotanicals.com/

Woodland Essence (tinctures)

woodlandessence.com/

Sage Woman Herbs (tinctures)

www.sagewomanherbs.com/


If you choose the Green Dragon Botanical capsules - get the ones that are individual herbs (not the LB Core orTonic that has several herbs in each capsule)....so that when you start, you can do one herb at a time to see if there is a reaction before adding in the next herb...etc.

Girlie - I am not taking any probiotic capsules or anything, but I have been eating a probiotic yogurt about 2-3 times a day (at least once always around the time I take my abx).

Traveler - don't worry, my expectations are already low. But, I do want to get everything I can out of the appointment since I waited 2 weeks for it. So far LLMDs and LLNDs are completely out of the question until I hit the lottery! I will just have to keep advocating for myself until I get the treatment that suits me best.

If she suggests a lumbar puncture, should I deny that? I've heard mixed opinions, but to my understanding, the false negative rate for LPs is quite high. I don't want to go through that if I don't have to.