Perhaps It's Lyme. [ Looking for LLMD around Lawrence, KS ]

Hey there everyone.

I'm new, have been doing research and exploring forums... learning as much as I can about Lyme disease and other tick-borne illnesses and co-infections. It's scary stuff, and sometimes the fear overwhelms me... and I feel like I should give up. But I have a loving support system, amazing people around me.

Because of them, I want to fight.

I'm a 26 year old married female who was diagnosed with Multiple Sclerosis 7 years ago. I've had various MRI's, no spinal tap. Here is a somewhat old MRI image of my brain.

VIEW IMAGE

(Note: I was bitten by several ticks before my MS diagnosis, but I would have never thought anything of it...)

Anyway, I was put on various medications over the years for MS - Beta Seron and Gilenya. They took a toll on my body, and last year I decided to stop my MS meds. I also dropped my anti depressants.

Last year I was also bitten by two deer tick nymphs, in my armpit. No rash. Not too long after I got flu-like symptoms, and I thought it was from the heat. It went away on its own. I did mention to my doctor I wanted a lyme disease test but he told me that since I didn't get a bullseye rash it would probably be pointless, and the tests tend to be inaccurate. From there, I thought everything would be fine.

Fast forward today. For the past 3 weeks I've been getting horrible symptoms. It started off with pain in my upper right abdominal quadrant area - where my liver, gallbladder, kidney is located. It feels like a squeeze and a stab if I eat. Then I developed pressure / pain in the left quadrant, where my spleen is. I went to the ER - got blood tests, urine test, CT Scan and an ultrasound. They essentially found nothing alarming. I got a HIDA scan to test gallbladder function - it's working fine. My current symptoms, progressing rapidly by the day are the following:

Swollen lymph nodes under jaw, Pain continuing in upper abdominal quadrants, dull aching pain in the bones of both my arms, stiffness of neck, cracking joints, overall weakness especially in my hands, sensitive nerves, burning pain of my legs muscles (comes and goes), knees feeling swollen - develop heat rash when I take a warm shower, shooting pains in ankles (comes and goes), back muscle pains around shoulders, pain in my hips, depression, anxiety, panic attacks, thrush (yeast infection in my mouth - treating with an antifungal), sore throat in the morning, problems sleeping (I stayed up for 5 days straight, finally able to sleep last night), heart beating fast and rapidly, weight loss, petechiae.

I just don't know what to do now. My husband and I are currently poverty stricken. Our family members aren't better off and everyone is just scared. No one wants me to give up, and everyone keeps telling me it's just an MS flare, but I know what MS is suppose to feel like. I see a doctor on Monday and I'll address these symptoms to him... but I just... I don't know. I'm on Blue Cross Blue Shield Silver plan and it's been helpful, but I hear that insurance companies may not pay for anything lyme related, especially if you may be a chronic lyme sufferer.

Also, I live in Lawrence, KS and I am indeed curious as to where a LLMD would be located - I know there are a few in Kansas. If you can e-mail me a doctor I can at least be aware, even if I won't be able to afford to see one.

I have a few friends who are willing to loan me money for a lyme disease test, but I know this is a clincal diagnosis and a test isn't always necessary - but can surely help. I hear Igenex is the best way to go... but I really don't want to waste anyone's money. Should I just get the ELISA and Western Blot and hope the insurance covers?

Truly, I apologize for such a long post, tl;dr etc, but any tips or advice will be appreciated. I'm very frightened, I feel like this is a nightmare. I've debated whether or not I should just avoid seeing any doctors and let nature run its course, even if it means more symptoms, suffering and eventually death. Yet I have people I absolutely adore and I know me leaving would cause them great pain... I wish I could live long and prosper with them - more than anything.

Thank you, thank anyone who takes their time to read this. From the bottom of my heart.

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Post Edited (Chatloup) : 3/8/2015 6:17:32 AM (GMT-6)

Went ahead and added that bit to the post title here. :>

Hi Chatloup!!

Welcome to our community!! I'm so glad you found us!

If you would send me an email with the area you live in, I have a couple of options for you for a LLMD, and can share some possible ways to pay for at least part of your treatments if the doc's don't accept insurance.

You can also email the Tick-Borne Disease Alliance at [email protected] for LLMD referrals and you can go to tbdalliance.org/ to learn more about these infections.

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) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf


I think it's wonderful that you have done so much research into your condition and know for yourself what it isn't. That's important. Many of us, including myself, have either had or dodged a MD diagnosis even though we have Lyme. I actually had a doc scream at me, at the top of this lungs, that if I didn't start MS treatments that day that I would die very soon!!

We are here to help you with as much information as we can provide for you to determine what the best course of action for you would be.

I just sent you a listing of LLMD's around your area, hopefully you can find one you can work with. If you find that none accept insurance that you can get to, let me know and I'll send you some ideas for helping with the cost.

Try to not let the appt tomorrow get to you. Unless they happen to be Lyme literate, they won't support you. But - don't forget to tell them about the tick bites and the flu that set in just afterwards - sometimes doc's will perk up for that.

Also if you haven't had the progression like MS and Lupus is expected to have, and the meds haven't helped, you *might* get their attention. There really are some good docs out there still.

And updated blood tests might reveal something, so they may be a good idea - the more information you have about your health is always a good thing.

So I got some blood tests back....

I have a lot Vitamin D count, it's at 16 (it should be at 30-100). That's an easy fix. Sunlight and some supplements. It might explain my bone pain.

And I got a "positive" for ANA - Nuclear Antibodies. They are going to diagnose me with Lupus. I know it. I know they are going to try and get me on IV Steroid treatment like Prednisone to stop my body's current attack (it's going for my liver and kidneys, along with my muscles and joints). They will also try and put me on Plaquenil - a hardcore anti malarial medication. I'm scared. Should I demand a Lyme test? I've never had one before..... and my insurance company is weird... and we have 50 dollars to our name.

This is just insane. I'm so afraid.

I'm going to have to do the steroid treatment.... there is no way to stop my body from attacking itself otherwise - or my organs are going to fail. But I know steroid treatments makes the lyme worse - as it weakens the immune system. AGH!

I will, I'm just scared because my organs hurt so bad..... my liver, kidneys and spleen mainly. I don't know how much longer I can handle my body attacking them.

I've been drinking a lot of water, eating lots of veggies (kale, cabbage, beets, asparagus, garlic) and some fruits (cantelope, apples, berries), taking Vitamin D3, apple cider vinegar, organic olive oil, almond / coconut milk and milk thistle, cilantro along with MSM. Been avoiding all dairy, gluten, red meats, refined sugars, greasy foods, fast foods, etc. I plan to start consuming more ginger, dandelion, lemon grass tea, and hemp oil. I think making a turmeric milk will probably help too?

I've been eating skinless chicken, chicken liver, turkey, and I have an egg once every three days. Also walnuts, almonds, pumpkin seeds, chia and flax cereal.

Hi Chatloup, welcome to the forum!

Im sorry to hear all your going through. I can tell from your writing theres ALOt weighing on your shoulders as many of us have been in very similar predicaments at the start of our lyme diagnosis's. First off, since thankfully you do have insurance you should get your doctor to test for lyme via the Elisa/Western blot tests. Sometimes these come up positive BUT sometimes they dont unfortunately (false negative results).

Igenex is known for being the best test for lyme but it is not accepted by the CDC/or mainstream doctors as a valid test. It would essentially be giving you the diagnosis you look for. However, as another mentioned...the Igenex is still not even 100% accurate.

The tests for lyme are annoying (for lack of a better word) and the co-infection tests are even more unreliable than the lyme tests.

So, IMO if I were you, giving how you state your finances are... I would hold off what funds you have or can get, to see an llmd with. LLMD's go by a "clinical diagnosis" based on your symptoms and history.

I get that if you dont have lyme, you dont want to fork out that much money to an llmd though. I guess you have to kinda follow your gut instinct with this is what I will say.

I just know if I had to spend money on testing or an llmd...it would be the llmd. Again, the decision is completely up to you though.


Just curious, have you taken any antibiotics since youve been ill? You say youve been reading alot, Im sure youve heard of the 'herx reaction'. Have you taken any antibiotics and felt different of any sort?

Also, you said your lymph nodes are swollen. This usually means your body is fighting some kind of infection(or virus) or there is inflammation in drainage area. I am pretty sure that swollen lymph's is NOT a symptom of MS. Also the fact that you had flu-like symptoms following a tickbite raises even more of a red-flag. There is only a certain percent of people who get a rash following the tickbite.

All in all, your comment-
""I've debated whether or not I should just avoid seeing any doctors and let nature run its course, even if it means more symptoms, suffering and eventually death. Yet I have people I absolutely adore and I know me leaving would cause them great pain... I wish I could live long and prosper with them - more than anything.""

.....You do not want to let nature just run its course and let the disease progress. If what you have is lyme, it is treatable. Im not saying it will be an easy road ahead but your life is worth fighting for.

The quote you have in your signature says it all ;-)

Please dont hesitate to ask the forum for any further assistance, advice or support!


~~Hang in there~~

Hugs & Healing-Courtney


P.S. From eating the chinese buffet every week, your diet sounds pretty darn good!

Post Edited (orchid_rain) : 3/10/2015 3:41:58 AM (GMT-6)