Lyme Disease Help!!?? Especially w/ steroids?

[lymehelpneeded]

I am a 23 y/o male.

I have been having pretty bad brain fog for around 2 years now. Often times it is hard to complete sentences. I have noticed this periodically for around 6 years now. I used to treat this by drinking a ton of caffeine which provided low to moderate relief. I have noticed that increased stress increases the severity of the symptoms.

At one time or another I have experienced almost all of the Lyme related symptoms, but definitely the brain fog is the most noticeable and disturbing.

Some symptoms I've experienced

* Facial twitching
* Extreme joint ache in the knees
* Abdominal pain
* Racing mind (can't stop thinking)
* Night sweats
* Problems swallowing
* Depression
* Anxiety for no reason (fight or flight)
* Alternating diarrhea and constipation
* Blurry vision / vision that won't focus
* Memory loss
* Loss of sense of direction
* Fatigue
* Nausea
* Fainting
* Hypoglycemia
* Cannot wake up fully
* More awake at night than during the day
* Insomnia and/or wanting to sleep all the time
* Easily angered/saddened

Thyroid checked out fine.

About 6 months ago I first started getting B/W done to figure out what was wrong with me. I discovered that I had really high DHEA (very out of range), and low testosterone (slightly below range). Also my EOS levels were really high. I went to an endocrinologist and he put me on Test-C supplementation. I asked him about the DHEA levels and the EOS, but he disregarded both.

After starting supplementation my condition has gotten worse. Even worse brain fog now, decreased sex drive, etc. etc. The only thing this helped was increased muscle mass.

As such I know that the low testosterone result the first time was a symptom of something else, so I ordered a Lyme Disease Western Blot. It came back positive on igG 41, but nothing else.

I have been camping my whole life, and been all over the East Coast so it stands to reason that I could have picked it up from somewhere. I definitely have a long lasting infection of something, but as far as the CDC is concerned, it is negative. I'm guessing if I do have Lyme I have had it for a long time.

So what should I do now? I want to come off the Test-C supplementation as that is pointless and I need to get my body back to homeostasis. I also want to try a heavy routine of IV antibiotics. Can I do them both in parallel?

I need to get fixed as I cannot live like this anymore.

Is there something else I should try first? Should I see a neurologist and get a cat scan?

Assuming I do have Lyme Disease, what should the course of action be? A user on another forum said he was cured from the following protocol. More or less I will be telling my GP exactly what I want him to prescribe me, so any feedback you can give me is greatly appreciated.

500mg 2x/day Cefzil
500mg/day Tindamax
40, then 80mg/day Benicar
4000 IU/day Vitamin-D3
tons of acidophilus tabs
Fungal Defense
numerous other supplements to help support my system.
Read more at http://www.************.com/boards/showthread.php?t=597688&page=2&ktrack=kcplink

Thank you all for your time.

[JackieCalifornia]

The endocrinologist was just doing what he/she has been trained to do ... Lyme is an unknown part of the medical universe for most docs.  One of these days that will change, but not this week or next.  

About going off the steroids, I know nothing about them except that going off cold turkey or too fast may cause problems.  If your current doc will help you get off them, you might do that.  You could ask your pharmacist, but s/he might not want to answer.  

A Lyme doc will know how to stage the treatment and how to maneuver between different medical approaches -- that's why it's important to have an LLMD you feel comfortable with.  

I don't know if anyone posting here is from the Seattle area, but here's how I would find an LLMD:

Check these websites -- some of them have referral functions where you can type in your location and they'll send you some names, or people will send you emails.   Also, you can google 'llmd seattle' and see what you get -- you still have to have your antennae up as to whether the doc is worthwhile ... like any doc, they come in all the flavors of good, bad and middling.  Here are some websites to check:

ilads [dot] org -- this is a good site for information about Lyme and treating it, but I can't find a referral function there.  
=============================
these may be more likely to have referral functions, or you can post a message ''seeking Seattle LLMD":

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

I think the last one, CALDA, also covers the Pacific NW but not certain.
===================================
Also, I just googled "llmd seattle" and got a bunch of hits you'll have to dig through ... and also noticed some of them are on the canlyme website, which is the Canadian website, and the hits came up because the people posting were seeing an LLMD in Seattle.  

Always get copies of all your medical tests etc. and keep a set of your own ... if you see a new doc, then take copies of all the past stuff with you ... but keep your own set.  Lyme is not a quick thing to deal with, and having that history may be important ... and if your memory is as dodgy as mine is, well ... !  Interestingly, my memory is sometimes just fine ... so I know it's hiding in there somewhere.

Take care, forge ahead, and let us know how you're doing, okay?  You've gone through a lot already, and you can do this.  

[lymehelpneeded]

I'm looking for a LLMD in Seattle, WA.

[lymehelpneeded]

Thank you so much Jackie. I'm wondering how to stage my treatment though. I am desperately trying to get off the test-c before my body is permanently messed up.

So should I attempt to do that before going to see a LLMD? Can I come off that and start my antibiotic treatment at the same time?

Why oh why did this endocrinologist put me on this when I had so many other symptoms?

[JackieCalifornia]

and PPS  re anxiety.   It will recede as you are treated.  I think many of us fear we are losing our minds and will never be the same again, but the 'real you' is still in there somewhere -- you gotta trust me on this one.

[JackieCalifornia]

and PS re not seeing a tick bite:  maybe half of us never see the tick or get the telltale rash.  having the tick/rash is helpful, but not diagnostic.  LLMDs know that; others docs, not so much.

[JackieCalifornia]

Welcome to medhelp --

Sorry to hear about your predicament -- I have to say I've had most of the symptoms you list -- and by most I mean all but maybe 3 of them.  You are not alone.

Endocrinologists are not generally known for their Lyme savvy.  I saw three of them (among many other docs) before getting a Lyme diagnosis, and they were not particularly interested in looking beyond the things they were comfy with.  One of them did test me for Lyme but dismissed the vaguely positive result as inconsequential.  

You don't indicate what part of the country you are in, and some areas have more LLMDs than others ... if you can, I strongly recommend you see an LLMD rather than try to coach your friendly GP on what to do.  

An LLMD would take your history, look at your test results, and based on your symptoms, order tests to see what comes back.  There are different tests for the various diseases carried by Lyme ticks, and they each have their own treatments, some of which may overlap with Lyme treatment, but not all.

Lyme diagnosis and treatment is an art, not a recipe, and that's the problem with coaching even a friendly GP or other doc:  neither of you knows what you don't know and so can't take it into account.  Once through the diagnosis and initial treatment decisions, follow ups with LLMDs are not that frequent, it seems, so even if you have to travel, it could well be worthwhile.  

Also the whole field of Lyme and other tickborne diseases is so new that science and pseudo-science are colliding with each other trying to figure it all out, and you have to pick and choose among the knowledgeable, the helpful-but-clueless, the wannabes and the quacks.  It's quite a circus.

Re your test result:  I'm guessing (I'm not medically trained) that you've been infected for so long that the Lyme tests may not reactive because your immune system is not currently making antibodies against Lyme, and it's the antibodies the tests measure.  Some docs will give you a short 'antibiotic challenge', which will wake up your system to recognize the Lyme bacteria, make antibodies against them, and then that will show up on a re-run Lyme test (ELISA/Western blot).  There is also another test through IGeneX Labs in California that measures it differently, but these are all decisions your doc has to make, and he/she has to be familiar enough to interpret what the test results mean:  they're not + or - like a drugstore pregnancy test --- they require a LOT of experienced interpretation based on your symptoms and history.

Re Test-C (testosterone cypionate):  I just looked it up on the net, and it appears to be an anabolic steroid.  Steroids suppress the immune system.  Lyme is a bacterial infection.  Your immune system needs to fight off the bacteria, not go to sleep.  I do not know anything about steroids, but maybe have read that going off of them abruptly is bad, so don't do that without checking with your doc first.  You may need to taper off, dunno.  There is a strand of thought in the troglodyte portion of the Lyme community (i.e., the old timey docs) who think Lyme has autoimmune aspects to it, which would also argue for suppressing the immune system with steroids, but untrained I do not think that makes sense.  You need to find an LLMD.

About IV abx, some docs do that and some don't.  That's why you need an LLMD.

It's interesting and educational to check the Lyme forums online to see what approaches and treatments are being used, but you need a personal relationship with an LLMD that you trust, because your constellation of diseases and your personal constitution will interact differently from everyone else's -- Lyme is not one-size-fits-all in any respect, and your body's reaction to treatment may also require adjustments to treatment over time.

Sorry to preach, because you are asking the right questions -- it's just that the answers are complex.

If you go to ILADS [dot] org, under the tab 'About Lyme', you will find useful information on diagnosis and treatment.  ILADS is the main organization for LLMDs.  

Looking back at your posting, I see your question about whether you need to see an neuro or have a CAT scan.  There are certain specialties that are well known for being Lyme deniers:  neurology is one and I found it to be true.  

Your LLMD would decide what tests -- as far as I recall, SPECT scans are sometimes done in suspected Lyme cases because they show blood flow in the brain, which can be restricted in Lyme bec. of inflammation.  An LLMD would know what to order.

Okay, I've beat that point into the ground.  Don't mean to lecture.  But you need an LLMD, esp considering how long you have been ill.  The longer you have been ill, the more finesse is needed to diagnose and treat, I think -- but finding that right doc is worth the trouble.  

So here's my to do list for you:

1.  Find an LLMD

That's all.  

If you need help doing that, let us know.  Best wishes -- !

[lymehelpneeded]

Also I have been bitten by many many bugs over my life, most of which were assumed to be spider bites. Definitely have been bitten by fleas, spiders, mosquitos, but no conclusive tick bite.

[lymehelpneeded]

I got the LabCorp Western Blot, not the Ignex.