Possible Lyme?

[infinity7]

I was in northern WI in early Oct. We stayed at a cabin in the woods and went geo-caching in wooded areas while we were there. About one week after we came home, I got sick. I had a sore throat, low grade fever and was completely exhausted. Then in Nov-April I had 4-5 more bouts of some kind of virus. In January I started getting migraines and tremors. I've had all kinds of blood tests and multiple MRIs.

I do have hypothyroidism and Hashimoto's. My neurologist doesn't think I have MS or Parkinson's. There are scattered areas of white spots on my brain, but he said it's not in a typical MS pattern. The migraines are better now that my thyroid #s are getting better, but I still have tremors, numbness, muscle and joint pain that comes & goes and have had days where I feel like there are bugs crawling on me. I itch everywhere but there's no rash and no bugs.

I was thinking maybe the tremors and other neuro issues are due to the bartonella co-infection. I had a western blot test and was only reactive/abnormal on band 41 KD IGM. Next step is to get tested through Igenex.

What other illnesses can cause a 41 IGM abnormality? Is it worth it to go through Igenex? I'm already out so much $$ for my thyroid and neuro issues but I would like to know that cause. I know Lyme is a clinical diagnosis but I can't afford a LLMD. I'm already seeing an MD, a functional MD (not LLMD) and a neurologist.

[mojogal]

That is great news!

[JackieCalifornia]

YAY!!!     I <3 your doc.  

Keep us posted!

[infinity7]

I saw both of my doctors today and got my Cyrex lab results. My gut isn't as leaky as they thought... I'm on the high end of normal for only one value. The rest are fine. I also have some food intolerances confirmed by Cyrex, but I kind of knew about those through elimination diets.

My MD wrote her Master's thesis on Lyme, and her sister had it, so she's very knowledgeable. I almost started crying when she told me that. She'd still like me to talk to an LLMD. She knows one in MN so she told me to call him and ask for a phone consultation. She said she'll work with him to get me tested and on a treatment plan. After ruling out a bunch of other stuff, she said there's a "strong possibility" it is lyme.

[mojogal]

I was unable to read everything, above, having blurry eyesight but I do want to say I was told I had hashimotos/hypothyroid and mine was a result of having Lyme.

I was misdiagnosed with many things but MS was one of them due to the white matter in my brain.

I had to go on a very low carb diet to get any relief from my leaky gut. I have heard of people feeling better just cutting out sugar, gluten and dairy. I tried many things until I found that this worked for me.

Good luck.

[infinity7]

That's a great suggestion re insurance. I'm also seeing my functional doc this week so I can see what she can offer as far as testing and treatment. I skimmed through Dr B's guidelines on the ILADS web site - thank you! That provided a lot of great info. I'll share with both my docs. We have really good insurance so I'm hoping if I submit the expenses, we can get at least a portion back.

Yeah, this thyroid thing just seemed to come up out of the blue. I'm on the AIP diet to help heal my gut and avoid common allergens, but all this had to come from somewhere. Hoping I can figure it out sometime in the near future.

Thanks again and I'll post updates!

[JackieCalifornia]

I hear you.  It's not like being ill is bad enough ... then we've got to hassle with the insurance!  Bleh.

Here's an idea:  pay out of pocket for the Lyme expenses, then submit the receipts to your insurance company and get reimbursed.  You may not get reimbursed for as much as if the doc were in your network, but it's better than nothing.  Your Lyme doc might be willing to wait for your insurance to pay so you don't have to come up with a lot of cash up front -- can't hurt to ask, and the worst you will hear is 'no.'  

That's what I did:  my Lyme doc didn't take insurance (many of them don't, to avoid arguments from the insurance company about the non-CDC approach to diagnosis and treatment), but as long as the insurance companies are just reimbursing for medical expenses already incurred, they can turn a blind eye and reimburse you after the fact.  They treat it as an 'out of network' doc.  

My Lyme doc, like many of them, did not take insurance, but my insurance company reimbursed me most of my already-paid expenses for the Lyme doc.  In addition, my ins co paid for all the meds prescribed by my Lyme doc at the same rates as if my doc were in-network.  

Does that make sense?  
-----------------------
About the Hashimoto's and hypo thyroid:  Lyme often messes with the endocrine (hormonal) system, which includes *thyroid function*.  So it all may be connected to Lyme.  As I recall (it's been several years ago now), I was put on thyroid supplements when I first had Lyme, but once the Lyme treatment took effect, I didn't need them anymore -- in fact, they were too much for my system -- and I've not taken the thyroid meds again now that I'm well.

At the ILADS website, there is information you (and your doc?) might be interested in, including Dr Burrascano's treatment guidelines.  I don't know how recently the guidelines have been updated, but it helped me see the big picture of Lyme and how it affects so much of our body chemistry.

Keep us posted!  

[infinity7]

Jackie,

Thank you so much for your post and all the info!

I was DXd with Hashi's and Hypo in Feb. of this year. All of these symptoms came on in Oct., and I've had several doctors ask what happened then... car accident, surgery, something traumatic? I couldn't think of anything, then a few weeks ago I remembered we had been in WI and I started thinking about the lyme connection.

I'm not very impressed with my neuro. I started going to him because of the migraines and tremors. I've had 1 brain MRI w/o contrast and then a brain and cervical spine MRI w/ contrast. He basically told me he doesn't know what's wrong with me. He said I must have benign essential tremor and gave me a med for it, which I chose to stop taking after 4 weeks.

This is all somehow tied together. I got sick in Oct and haven't ever fully recovered. I have weird symptoms that come and go. I'd love to see a LLMD, but I can't afford anymore out of pocket expenses. The ones in my area don't accept insurance. My functional doc (basically a doc who doesn't treat symptoms, but gets at root causes and treats that way) said she has several lyme patients, so I know she'll work with me, but she doesn't accept insurance either. I'm seeing my MD today and I emailed her a couple of weeks ago. She said we can "discuss" lyme testing. I'm hoping we can get insurance coverage for Igenex.

I read that 41 can be reactive for syphillis and periodontal disease. I don't have either of those. I was thinking since it was IGM positive, that means current infection, so it wouldn't be Epstein Barr either. My 41 IGG was negative. You're right.... I really need the Igenex test.

I was bitten by a tick 35+ years ago when I was a kid. My mom tried Vaseline suffocation, burning it and eventually pulled it out with tweezers. I don't recall having been bitten this past Oct., but I know not everyone is aware they've been bitten.

I just want to know what's wrong with me so I can figure put some sort of treatment plan. It's hard enough managing the Hashi's and hypo.

Thank you again for all the info! I'm going to beg and plead with my MD today. She's a very good doctor and has been willing to take less conventional steps to help heal my thyroid issues, so I'm really hoping she'll agree to the Igenex test. I'm glad she's at least willing to discuss it.

[JackieCalifornia]

Welcome!

You are asking good questions --

Did you have hypothyroid and Hashimoto's before you got ill recently?  Lyme can mess with the whole endocrine system, but in different ways in different people ... that's part of what confuses the docs and their diagnoses, so I read.

Sadly, neurologists are among the specialists who put Lyme disease at the bottom of their list of possible ailments when faced with mysteriously ill patients.  Before going down the path of assuming or trying to prove hypothyroid/Hashimoto's, I personally would want Lyme ruled out.  You've already been through a brain scan, yes?  You might want to consider seeing a Lyme specialist (quietly, and without necessarily telling your neuro that you are slinking off to do so).  I know, it sounds sneaky, but there is a total lack of understanding about Lyme and its co-infections when it comes to certain specialties, and neurology is right up there at the top.  (Sorry, I'm in a blunt mood today, so no sugar-coating available this evening.)

You say, "I was thinking maybe the tremors and other neuro issues are due to the bartonella co-infection."  The older Lyme tests (ELISA and Western blot) are not terribly precise, and you could have a false negative result, meaning you have Lyme but the test says you don't, so it's good that the "Next step is to get tested through Igenex."  IGeneX testing is more accurate, so I read, because it looks for Lyme bacteria DNA in your blood (a direct test), while the older ELISA and Western blot tests look for your immune system's response against the presence of Lyme (an indirect test).  This is an issue because Lyme bacteria can and do *suppress* the activity of your immune system, which could well cause the ELISA/Wblot tests to come back as a false negative, meaning the test says you are not infected, but the test is wrong and you *are* infected.  You ask:  "Is it worth it go through IGeneX?"  I would say absolutely yes.  

You ask:  "What other illnesses can cause a 41 IGM abnormality?"  Good question.  A positive on band 41 IgM could mean other things such as syphilis, for example.  To narrow down the results to identify Lyme only, the IGeneX test will do that.  For my money, that makes it worthwhile.  The other approach would be to test only for 41 IgM, and if it comes back negative, THEN run the IGeneX test --- but despite the cost, I would rather have the specific, direct, IGeneX test and not have to back out the other possibilities of band 41 IgM.  IGeneX is, to my reading, top-notch.  They have a website; take a look.  They are in Palo Alto CA.

"I know Lyme is a clinical diagnosis" -- actually, it can be diagnosed clinically, but a positive test is not uncommon.  I had been ill with what turned out to be Lyme for months and months, but my Lyme test was positive.  It's not a bad test, but IGeneX is a better one.  And the more data points you have, the more security you have that your treatment will be the right one.

You say you are seeing, among others, a neurologist.  Nothing against neurologists generally, but they are not the docs I would go to for diagnosis and treatment of Lyme.  They just don't have it on their radar, and neurologists and infectious disease docs are among the specialists locked into denial about Lyme as anything other than a minor ailment that's cured by a few weeks of doxycycline -- which is true about the doxy, but *only* if diagnosed and treated very, very soon upon initial infection (as many of us are not, and often have no idea when our first infection occurred ... sometimes the first bite doesn't give you much in the way of symptoms, so who knows exactly when that first bite happened).  

I don't know what a functional MD does, but maybe you could put that doc on hiatus for a while too.  Just a thought.

Note:  I'm not a doc, but I've been through the Lyme dance, getting rid of it soon and entirely is well worth whatever it costs.  Keep us posted!