Running out of possible dxs!

[fordwoman88]

I have been on med help in many different forums in the past year, lupus, lyme, fibromyalgia, and autoimmune. Cant quite pin point what I have...stumps every doctor i come to.


From the beginning... I was about 12, Had my tonsils and adnoids removed...I was in pretty bad shape, always getting sick, horribly bad breath, spoke through my nose...the usual.
Then as soon as I hit puberty a year or so after I had terrible episodes of what was later diagnosed as Baslar Migraines. They would start with a personality change, moodiness for a day or so prior, then it woud peak and I would black out or collaps, partial parralysis of my limps, severe pain, no vision, couldn't talk, respiratory distress and inconsistancy, shaking or almost seizing. This would last a few hours or so, then I would slowely come out of it, most times with out hearing, or vision. It would gradually diminish then I would have a complete memory loss of the whole day or two. They were brought on by stress. I had the last one when I was 19 or so.
I was then completely healthy and active, got married and in November of last year I had a miscarriage at around 6 weeks. No obvious reason to why I miscarried.
That month I also moved down from where I grew up in Oregon to live in Arizona.
Last April 09 I suddenly one night at 9pm I felt as tho I got hit by a train. Every muscle in my body ached and hurt, felt soooo sore. It went away the next morning and then once it hit about 9 that night it came back. This went on for about a week only during the night. On the 7th day it didn't go away in the morning. I went to my GP and he did a lupus ANA, RA factor, and SED rate. ANA and RA normal, SED rate high.
Since then I've been to close to 12 doctors, 3 rhuemys, 2 neurologists, 1 lyme disease specialist naturopath, 1 CDC lyme disease specialist, 1 GP lyme specialist, 1 oncologist and now a rhuemy/immunologist at OHSU.
It started out I only had SED rate CRP elevated, then my RA factor, IgM lyme WB positive, IgG lyme WB neg, clean MRI, and now I have elevated light chain protiens, possible early lymphoma markers, really high WBC, high ANC, high metabolic protien, and high IgG in the immunoglobulin profile. Normal ANA, thyroid tests, vitamin levels, and urine protien analysis.They supposively found a bio film community with an active infection, supposively responsible for my symptoms. I took Biaxin for 3 months, there was no change, the prescribing doc doubled the dosage, there was still no change at the end of 6 months total. I am no longer on it.
My symptoms are:
Muscle aches/pains/soreness - feel like they are never "in shape", very sore!
Joint aches/swelling/arthrialgia- elbows feel as though they are injected with jello, hips feel like they need to pop, and knees are usually just really achey. These are the joints that bug me the most.
Pain in hands-small bones in hands and wrists, cant put weight on hands like when crawling or getting up, cramping when holding small items like paper or popsicle between thumb and forefinger
Pain in bones-Like a mid bone break, deep aching to sharp
Extreme fatigue- comes and goes, some days is way worse others on good days is like you have a cold, lack of energy
Chest pain/heart palpations- the pain is like a lightning bolt through my chest, some times it feels like a heart attack, get pain at night when sleeping and it wakes me up.
2 bouts of mouth sores-internal white lesions, gum degeneration, teeth moved, lip blisters (high fever went along with the lesions, doctor could not explain)
Sensitivity to heat- out of body feeling, hard to concentrate, rashes (chest and face) sometimes.
Tingly, pin prickly arms and legs- fall asleep very fast and easy
Vibration in blood- high frequency vibration in body, shakey feeling like after vomiting
Lightheaded and dizziness-brain feels like it's floating inside my skull, sometimes feels like I got up too fast.
Memory- short term disturbances, long term memory confusion
Difficulty concentrating and easily frusturated-especially with lots of commotion and back ground noise.

Currently taking: 50,000u Vit D once week, B12 1000, Multi vitamins
When the pain is real bad I take: Flexeral, Diclofenac
I was on tramadol and soma but GP was scared of dependency issues.

When I went to one neurologist he thought it might be some sort of stress induced Basil Migraine. Did a EMG and it had a slight distruptency but the thought it may be due to the meds.
Another Neurologist was convinced it was MS, MRI ruled it out.
#1 Rheumy thought it was fibromyalgia but no tender points. Tried Lyrica, did nothing.
#2 Rheumy thought it was late onset Juvinile RA (runs in my family), but only swelling and no redness. Plus it didn't explain all symptoms.
#3 Rheumy from OHSU doesn't think it is any of these, and not the infection disease. Some other autoimmune disease.
Oncologist suggested allergies. That was not it. He found more protiens pointing to Multiple Myeloma, but this cancer doesn't cause my symptoms.

Now my white blood count is normal, same with CRP and SED rate. Started getting chest pains and heart palpations, in April did chest x-ray, no abnormalities.

I also am allergic to many pain meds, vicodin, codine, darvocet, percocet, and short term antibiotics
The pain goes in cycles- will get really bad for a few days, then will get better and very manageable.
I have no pressure points or anything you can see besides the slight rashing.

I believe that I have far more pain than fatigue, plus the lack of tender points, so it really doesn't fit fibro.
No positive ANA to prove lupus. Clean MRI to rule out MS. And the one missing band for lyme so I can not be diagnosed with that. My thyroid tests have always been normal also.

I just dont know where to turn to next. As of present, the doctor at OHSU and my GP told me to just wait till it gets worse and there is more abnormalities on tests so that we can have a direction to go in. Is there any other test that someone could suggest that I havent tried.
Thank you for your time and sorry about the length of the post.
Take care!

[heidimama]

I agree with JackieCalifornia.  I have soooo many of your symptoms and I have too been to many doctors with different diagnoses even some of yours.  I was thinking that I am going to die any day and was praying for more time to raise my kids that is how desperate I was.  Recently found out that Lyme is not always positive because of test since testing is less than 50% accurate.  There is a big disagreement between doctors right now and if doctors would just stop being so pompous and work together, we could save some people.  I live in ME and have to drive to a doctor in New York because he will treat me with anitbiotics even though no one else will and I have 2 bands less than the CDC says I should to be considered Lyme Positive!  The antibiotics will kill off the Lyme but that produces toxins and you will feel sick for a while, but then it gets better and you get better.  Look up ILADS online or follow Jackie's advice.  I had to pay out of pocket for my doctor, but it is worth it since he is treating me and no one else will. AND, most doctors that will treat you for Lyme don't treat you long enough, 3 weeks is not long enough to kill Lyme.  hang in there and never give up.

[JackieCalifornia]

Different LLMDs use different meds at different times, based on their personal theories of appropriate treatment, and based on what other infections the tick that bit you may have had.  There's no one-size-fits-all.

Since you have insurance, maybe you could find an MD who is 'Lyme Literate' and then insurance will cover the visits.  I think you are near Portland OR, yes?  If you google "portland oregon LLMD" there will be a bunch of hits and you can sort through them to find one or more to try.

Good luck!!

[fordwoman88]

Thank you so much for your information and help! I think I am leaning more towards some sort of genetic problem. My youngest sister and father have joint and muscle pain, much less than mine. We all have Basilar migraines and dry skin as well. They do not have all of the same symtoms as me, but I'm wondering if there maybe a connection. ??
Its very interesting! I'm gonna have to save up to try at the lyme doctor again. I really did like her approach on the entire thing. But I just haven't been able to work for the past year and my husband and I seperated so all I really have is my health insurance, and although it's amazing bc they pay 100%, they will not accept naturopatic medicine as a doctor they cover.
So what other antibiotics do they use to treat lyme?

[JackieCalifornia]

Aggh.  You've been through the mill, haven't you.  

Here's my take, for what it's worth:  The first Lyme MD you saw sounds promising.  Any chance you could see him/her again?  Even if you have to pay out of pocket for the meds.  

The second Lyme MD sounds a bit 'out there', tho Biaxin and plaquenil are known to be used in treating Lyme etc.  I took Biaxin, tho not plaquenil, and different docs and different diseases take different combos.  I had a bad reaction to something I was on a while back, and the LLMD had to take me off of it and change to something else.  So it happens.  But there are usually other meds that can be used, rather than doubling up something that is making you sicker!  

I have read some about biofilms etc. and know very little about them, but I take it to be the same idea that's described as Lyme bacteria hiding out inside cyst like formations in the body, which protect the bacteria from your immune system and medications.  This is part of the war going on in the medical community:  not only do LLMDs dispute the nonLLMDs and vice versa, the LLMDs dispute each other's view as well.  That's how progress gets made, but it's hard on the patients, huh.

The OSHU doc (tho I don't know what OSHU stands for .... Oregon State Health .... ?) sounds like a totally NON LLMD, seeing as he insists it's autoimmune.  That's a favorite dodge of nonLLMDs.

In your situation (and I'm not medically trained), I would find a new LLMD and give another run at confirming the diagnosis and checking out treatment options.  Support groups are good, but they don't treat the disease, ya know?  Lyme doesn't just go away on its own, it seems.  I'm still working on a cure for myself after at least 4 years of infection, but I've made a lot of progress despite some set backs.

Let us know if we can help further, okay?  And let us know what you do and how it goes.

[fordwoman88]

Hi,
Thanks for your advice and input. I have been to two different lyme specialists. The first was fully convinced it was lyme, even with out the last positive band. But unfortunately, she was a naturopath and my insurance would not cover any treatment based on her diagnosis so I had to go to a CDC doctor who was not convinced and would not treat me. The second was a lyme literate GP, that told me insead of lyme it was a seperate new disease his lab discovered while treating patients in the area for lyme. It is a autoimmune infection that is in a biofilm. He took a picture of the biofilm, saying that it was proof. He began treating me with high doses of Biaxin and plaquinil. After 3 months for my check up,  I had only gotten worse, so he doubled the Biaxin, this still didn't help. I went to OHSU and they took a look at the lyme literate GP and his picture of the biofilm and said that he was a crock and only trying to promote his lab. Maybe I will try the support group, but while I was on the Biaxin, my WBC raised and then stayed raised after I was taken off of it. So the antibiotics didn't correspond with the WBC. The OSHU doctor said that it was proof that my disease is not lyme or that unknown disease. It must be something strickly autoimmune.

[JackieCalifornia]

I'm sorry to hear you have had -- and are having -- such a difficult time.

Going from MD to MD and getting non-answer answers is a common experience for many of us here.  No two people with Lyme have exactly the same symptoms, partly because we are all different and partly because there are at least a half dozen other diseases that the Lyme ticks can also carry, and each of those diseases produces different symptoms.

The good news is that you are still fighting for a diagnosis.  Good for you!  

My suggestion would be to find a Lyme specialist.  While many kinds of MDs can diagnose and treat Lyme+, the current position of so-called mainstream medicine is that Lyme is hard to get and easy to cure.  That's why finding a Lyme-aware MD who will be aggressive about diagnosis and treatment is important.

If you google "LLMD Oregon", there are bunch of hits that will lead you to an LLMD.  By the way,  "LLMD" is not an official title or qualification -- it is just shorthand for an MD who is 'Lyme Literate', meaning that the MD takes Lyme seriously.  There may also be support groups in your area that can recommend an LLMD or two.  Like all MDs, LLMDs are a mixed bag, and if you don't get a good feeling from one, try another.  

Let us know how you do, okay?  Hang in there.  Most of us have been where you are now.