22 yr old male Lymes?

[hv2laf]

Hello all,
Im going to make this a very short version and include links to other posts ive made if you wish to further your reading.

I am a 22 yr old caucasian male in the military. I have had quite alot of testing done lately for worsening symptoms and arrival of new symptoms. None of the symptoms seem to be consistent with anything I eat, drink, use on my skin, breath, how stressed, or how much sleep i get.
Here is a short symptoms list:
Hypersensitivity of skin
neck ache/pains
neck pops/cracks
upper back pain (feels like inflammation all the time sometimes worsens more than others)
lower back pain left side (low as in sacral area)
pain in left hip joint
"plantar fascitis" in right foot
temporary loss of sensation to pain (outsides of arms and legs)
permanent decrease in sensation in left foot in small area
Inflammation in white area of eyes (pic in profile)
eye redness all the time / watery eyes
constipation and diarreha (stool past few weeks: dark, tarry, thick but soft consistency, very foul smell)
randomized muscle spasms
Orthostatic Intolerance (hypertension throughout the day sitting and standing, hypotension when laying down and when sleeping)
"Erectile Dysfunction" or so they call it

Im going to stop there

testing my doc has done has mostly ranged around the basics.. mostly has tried seeing if i have an STD and HIV, checking glucose levels,  checking for heart attacks lately because of "episodes" ive been having. Stress tests, 24 heart monitors, EKGs, injections in the back to numb pain nothing has worked. I asked him about testing for Lymes he did the ELISA test when alot of these problems started happening but it came up NEGATIVE.
the episodes started happening more and more frequently each week.

So I went ahead and made an appointment with a Lymes specialist.
Before testing after explaining all this. He says
"I believe I know whats happening here. You may have Lymes but with that have 2 possible co-infections causing a few of the other pains. 1 is called Bartonella the other is called Babesia. First I want to get 2 labs done first. (labs in album)
IGeneX Western Blot IgM, I hit 3 of 5 of the DOUBLE STARRED bands with IND (23-25, 39, 41) . So it still came out NEGATIVE.
                         the IgG, I hit very POSITIVE on 31, IND on 34, and POSTIVE on 41. So came out POSITIVE for IGeneX criteria but NEGATIVE for CDC criteria.
With this test he ordered  a bartonella microscopy test. Which came back showing "Few coccobacilli adherent to erythrocytes" which says "suggestive of hemobartonella or hemoplasma".

My primary care doctor is arguing these labs, saying he still doesnt think its it, started talking about the labs references and how they dont mean anything.

I just had a cd57 test done today so Ill be waiting on those results as well.

anyone have any input or better test suggestions to have this ruled out?

The Lymes specialist also ordered Babesia test and  put me on antibiotics and wants to run an IgeneX Western Blot IgM test again.

links to other posts for more reading

http://www.medhelp.org/posts/Brain-Pituitary-Tumors/small-2mm-hyperintense/show/921546?personal_page_id=513007&post_id=post_4728586

http://www.medhelp.org/posts/Gastroenterology/Stool-problems/show/1016766?personal_page_id=513007&post_id=post_4737616

im open for suggestions! thank you

[hv2laf]

Ive just received back a few labs I had done within the past week.

I had my thyroid checked again because the first time we initially did it, it was normal, the 2nd time it came out LOW and this time it came out LOW again.

Range being 0.34 - 4.82 for TSH
mine was 0.25

FT4 fell in normal range 0.56 -1.40
mine was 0.67

T3 Free normal range 230-420
Mine was 324

Waiting on Vitamin B results and serotonin

I will see my endocrinologist on the 1st of Oct.

[wonko]

Steroids suppress the immune system.  They clear out inflammation, which is why they can make you feel much better.  But in the case of an active Lyme infection, the source of the inflammation is the immune system.  Knocking out the immune system creates short-term symptom relief, but is actually very bad for the underlying cause.

So if you have Lyme or any infection, steroids weaken your immune system which allows the infection to get much worse.  I felt amazingly better shortly after my steroid treatment, due to the cleared inflammation.  But in the months that followed, I became very sick and too weak to work full time anymore.  My deterioration was much more rapid after the steroids than before.

Everyone is different, this may not happen to you, and I hope that it does not.

Most mainstream doctors also do not trust the validity of Igenex/Fry labs, and it is common for Lyme patients requiring a clinical diagnosis and/or more than 1 month of treatment to seek care from Lyme doctors who do not participate in insurance.  

I also had negative ELISAs and all of my doctors through insurance denied that Lyme could be affecting me.  I see an LLMD outside of insurance and pay out of pocket.

[hv2laf]

So the best way would be to get a bartonella antibody test  since ive been on antibiotics to fight the co-infections and not Lyme.
Wait till I have been on the Lyme Antibiotic Minocycline for a month or two then redo the Lyme IgM Western Blot?  
If this is Lyme which is seems like it so far, I need to get it to show more positive so I can get my primary doc to get the referrals I need to continue treatment with this Lyme Specialist that way I can get my insurance to cover everything. Getting quite expensive you know!

[patsy10]

Your western blot could me more positive after taking antibiotics.  Some physicians will order an antibiotic challenge then redo the test.  When the bacteria dies and releases toxins the body may start making antibodies.

I would think at the very least a bartonella test should be performed since the other test indicated this.  I would ask for a bartonella test from your doctor.  Maybe he or she will approve of it if it's sent to a lab that he is familiar with.

[hv2laf]

My Lyme specialist didnt know about the corticosteroids. It was an ER visit that they gave it to me on.
What do you mean your "health was devastated by steroid treatment"?  After they gave them to me at the ER it seemed to help out at least with back pain.

The problem arises with this.
I am in the military. My primary doctor for military does not believe its Lyme. They did the ELISA test because I asked them to do a test for Lyme even though they didnt believe it was they based on the fact that I havent been to the East coast. After it came back negative he wont even consider Lyme what so ever. The other problem, Igenex and Fry Labs are not Labs military medicine uses so when you show them the results from those labs they just look at you funny and say "Im sorry I dont know what this is, its not a legitimate lab..etc." My Fry Lab showed a few bacteria around in my blood. Some outside the blood, some inside the blood cells. My doctor said the lab isnt FDA approved and the listed references are all zoonotic or research on animals not humans. Though the lab notes say "this is suggestive of hemobartonella"

The only thing my primary doctor believes is that im having muscle spasms and panic attacks. Believes I am completely healthy and to fix it I should take my Xanax when I have the "panic attack" episodes.

My Lyme specialist has me on Omnicef and Levaquin. Also he just put me on Minocycline but i have not started yet. I have to get some labs for military side done so I have to wait to start them.
So after being on antibiotics for a month or two if i were to redo my IgM Western Blot. would it or should it show more positive? I need something to show positive enough that the military would acknowledge. Positive enough to hit CDC standards should be enough to put up more of a fight with Tricare about this.
The other problem is.. I am paying for all the Lyme treatment and appointments myself. My insurance wont cover it because my primary doc wont refer me to the specialist.

what can you do? lol

[wonko]

Did/does your Lyme specialist know about the steroids?  As JackieCalifornia notes, they are a big no-no for Lyme patients.  My health was devastated by steroid treatment.  Sure, the anti-inflammatory action made me feel cured...for about a week.  

I've been in the "too many cooks in the kitchen" scenario before, where one doc contradicts the other and the patient is caught in the middle.  That appears to be an issue in your case.  Just my 2 cents.  

I saw your Igenex results posted.  You've got more bands than me.  I was IgG 39+ 41+++, and IgM 41+.  Always negative on ELISA (3 times, months between each).  Spinal fluid was negative for Lyme.  My Fry labs smear showed moderate Bart, but my other co-infection testing was negative.  I've had an obvious response to long-term combination antibiotic treatment.

Anxiety can surely make any problem worse, and it goes hand-in-hand with Lyme.  I have no history of anxiety, but have had small panic attacks and other anxiety symptoms in response to Lyme treatment.  Thankfully this has improved a great deal, but was a very real problem for me.  Treating the cause and not the symptom seems to be working.

Your symptoms sound very much like Lyme, and it seems you've been tested thoroughly for other conditions.  Are you considering Lyme treatment?