Autoimmune symptoms but no diagnosis......Any advice welcome

[mandymeal]

I became ill in July of 2011. I suffered from acute abdominal pain and nausea. Doctors ran all sorts of tests....found a small growth on gallbladder, negative for celiac disease and normal colonoscopy, gallbladder functioning well at 83%. The nausea has stuck with me but the pain is much better. I have been running a low grade fever for the last five weeks (every day between 99-100.7) and my hair has been falling out (not in chunks but I am finding it all over the place and if I brush my hair, my hair brush will be full of hair). I have a rash on my chest that developed in the last 3 weeks and am EXHAUSTED. I was negative for ANA and I feel LOST. My doctors do not know what else to do for me. I am being sent to Infectious Disease in a week for testing and I am trying to get in to see a rhemotologist who treats systemic lupus to make sure I am being checked on all fronts.......Anyone else went through something like this???

[ewford]

  Are you going to see Jemsek in DC?  Highly reccomend him as he is my ID doc.  

[JackieCalifornia]

Your LLMD may well have some things to say about your thyroid situation, since thyroid and endocrine matters generally can be messed with by the Lyme infection.  I would suggest that you get copies of all the thyroid tests you are having done and take them with you to the LLMD when you go, so that the LLMD will have the benefit of those results as well and can factor them into the mix.

Lyme affects many bodily systems in odd ways that nonLLMDs often don't see as interconnected, so regardless of what the endocrinologist says, I would run it past the LLMD to get his/her take on the situation.  NonLLMDs are like the old tale of the blind men and the elephant:  one feels the trunk and thinks the elephant is shaped like a snake, never mind the rest of the beast, etc.  It's too easy for nonLLMDs to fragment the symptoms and not see the big picture.

Let us know how it goes, okay?  Best wishes --

[evlangel06]

So glad to hear you are on the right track! I too have all the symptoms of lyme's and all dr.s say it's all in my head!  I am ruling out a Thyroid Disorder because the symptoms are similar to Hashimoto's. If that checks out I am off to D.C. to a LLMD. Did you check out Dr. Burrascano's symptom list? I have 38 of the 46 symptoms of lyme's listed. I also have been a pet groomer for 11 years, we pull ticks off almost every day! I did have a lyme's test done 2 weeks ago that came back neg. but, the common test dr.'s do usualy does.  I know 5 ppl that had neg. lyme's tests that were in late stages. Took a LLMD to figure it out. Good luck to you and please post your result's, as the ppl on these forums are life savers!!

[mandymeal]

I just got back from Infectious Disease and boy, were you guys right. They tried to tell me Lyme disease does not "exist" in the south. Wow. I told them I would be finding someone who would listen and test me like I needed to be tested.

[drsdonthelp]

Your Welcome, and just wanted to say, Good luck to you, find that LLMD, and get your dx. You have come to the right place to get any info. you need, I can vouche for that!! ( I think I spelled that right) LOL

Hang in there, Pam :)

[JackieCalifornia]

You're right about the ticks ... and these ticks are so tiny they are hard to see at all.  Dog ticks can also carry this stuff sometimes, tho I don't know if MDs often recognize that ... The point is, it's everywhere, but docs are taught that Lyme is rare and easily fixed with a couple weeks of antibiotics.

Also, the 'rule' about needing to see the tick AND have a circular ('bullseye') spreading rash is not always right.  I never saw a deer tick or had a rash of any kind, but definitely had Lyme.

I just searched on google for --

georgia llmd

-- and got lots of interesting links, including conversations about finding a GA LLMD and also a link to a Georgia Lyme Disease Assn.  Associations can be helpful, but they are often run by people like us here who aren't medically trained and aren't experts, so the quality of advice given can also vary -- but in my experience, it's always worth taking a look, but also always with a skeptical eye.

Sometimes the direct advice you get from a site about what to do and what not to do is not the most important thing you learn, but instead guides you to look for things/docs you would not have had a hint about otherwise.  

Best wishes --

[mandymeal]

Thank you all....this is more helpful info than anything I have been given in MONTHS of going to the "best doctors in the state." I live in Georgia and will see who I can find to take a look at me ASAP......I have been saying that I was not bitten by a tick but I worked in veterinary medicine for 8 years.....the chances of being bitten are really high when I think about that.

[ewford]

I am not sure where you are from, but Drsdon'thelp (Pam) stated that she found a LLMD.  Contact ILADS and ask to have a Dr reccomended to you as to where you live.  These doctors know about your symptoms, know they are REAL and that more than likely you are suffering from a chronic INTRACELLULAR bacterial infection coupled w/ coinfections AND possibly a Infectious Mycoplasma infection.  These bacteria suppress your immune system, allow latent viruses your immune system has been "holding in check" like HHV6, Cytomegalovirus, Enteroviruses, HSV1, etc.  The bacteria also causes the T4 helper cells to be innefective, allowing cellular malformation  to proliferate AND MAcrophages (the "street sweepers") of your immune system that clean up any minor bacterial and fungal infections.  So you will possibly remain chronically ill unless you boost your immune system, hold the bacteria in check with antibiotics, and allow the healthy immune system to slowly eradicate the bacterias INSIDE your cells.  I know it's complicated, but it's about as layman speak as I can give you.

  Now, I am NOT a Dr, just a very well informed poster here trying to help others.  research IMMED and search there under chronic illness, autoimmune illnesses.  You will see that THE MOST CURRENT RESEARCH states chronic illness is caused by numerous factors including viruses, bacterias, enviromental factors and chemicals in food.  

Let me know if this helps!  You need further testing though by a ILADS dr who can interpret the tests properly and knows the proper tests to order.  NO standard medical doc is gonna figure this out.  believe me, I know...

any info I have given you is my own opinion, and should be treated as such.  It is not a diagnosis, just an arrow to point you the way.

[JackieCalifornia]

I also went to an infectious disease MD and a rheumatologist, neither of whom took my illness seriously.  I finally went to a Lyme specialist, and got a diagnosis of Lyme and babesiosis.

There is great ignorance in the medical profession about how serious and widespread these tick-borne illness are, so you're forced to do your own searching, as you are now.

If you need help finding a Lyme specialist, let us know.  "LLMD" is not an official title or degree, but is patient slang to identify a doc who thinks bigger thoughts.  I don't know of any MD who calls him/herself an LLMD -- it's an attitude, not a degree.  

[mandymeal]

Thank you!!! It has been so frustrating when a doctor says, well you have a fever and we have no idea why and then send me home! ARGH!

[drsdonthelp]

Ewford has helped me get to my final dx after 4 yrs. of unexplained symptoms and misdiagnosis.

I took the advice from everyone here and sought out a LLMD ( Lyme Literate Dr.) and am now being treated for Lyme, Babesia and Bartonella. These kind of dr.'s take their time to listen and review EVERYTHING. I was not rushed out the door and told that I was crazy,, (what a relief) because most dr.s do that!!

Good luck and keep us posted!!
Pam :)

[mandymeal]

Yes! I do have chronic headaches, pain in my hands, arms and knees, symptoms of a UTI (that is new and just started in last couple of weeks), my ankles and feet will swell for no reason and pain in my neck area....thanks so much for helping me!!!

[ewford]

  Symptoms are very common among Lymes/Mycoplasma infections.  I have heard that hair falling out is a sign of a systemic fungal infection which Lymes and Mycoplasma bacteria damage the macrophages that kill the minor bacterial and fungal infections.  I think further testing is needed though.  I would skip the Rheumatologist as more than likely you will have borderline tests that wont rule out/rule in Lupus.  So you will be left wandering around and trying to find a doctor that understands your illness.

  Do you have any other odd symptoms that go along with this?  Such as: IBS, chronic headaches, eye pain, irratability, "pins and needles" feelings, vertigo, muscle and joint pain that migrates, ankles and feet hurt. Symptoms of a UTI or urgency.  Lower back pain?  Let us know so we can save you some time getting diagnosed.  

  I am NOT a dr, but I have seen symptoms such as yours and have helped many get treated properly after proper testing.