i was dx with fibro about a yr ago after being dx with herniated disks in neck and lower back with spinal cord being flattened, osteoarthritis, spinal stenosis and pre glaucoma. before i was hit with this on nov. 1. 2011 the only other problems i have had is medullary sponge kidney with renal tubular acidosis. i've seen over 14 different doctors for all my dx but still have some unanswered questions. how in the world did i end up with herniated disks in my neck and back when i didn't have an accident before i went to bed the night before??? i went to work the next am and by 9:30 am i felt like my ankles and wrists were just gonna break off for no reason, i couldn't stay out of the bathroom (IBS) and lost 13 lbs in 1 wk. i couldn't keep anything in my body, when i ate i couldn't function, i drooled from my mouth and eyes, and couldn't keep a conversation with anyone, i couldn't think of the words (common ones at that) that i wanted to say and the ones i did get out were jumbled, the numbness & tingling was through out my body. i have been tested for EVERY autoimmune disease that specialists can think of and even seen an infectious disease dr. who tested me for everything else. my blood work always comes back good. is this the norm for ppl with fibro?? is it common to have the herniated disks/osteoarthritis??
My suspicion after reading your post twice, is neurological Lymes disease with co-infections.
Infectious disease doctors don't know "bleep" about Lymes and Company or exercise "deliberate ignorance". Only LLMDs can help you with this.
You may be a victim of the hugely controversial and dysfunctional approach
to such conditions, by medical authorities, mainly the IDSA, which dictates the policy and the (wrong) treatment protocol.
I suggest you post at the Lyme Disease Community, as well.
Things to look into or that have to be ruled out :
1. Pathogenic infections such as All Borrelia species (lymes)- not just Borrelia Burgdoferi,Anaplasma phagocytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search here in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor in the A/I Community recently.
Your results are most likely a false negative. I'm not surprised!
If you haven't seen an LLMD and if you haven't done a complete Borrelia and co-infections panel using IgeneX Labs, you're nowhere close.
2. HLA panel to verify the body's ability to fight biotoxins
3. Heavy metal toxicity.
4. Stool analysis for pathogenic bacteria, parasites, yeast, and levels of beneficial bacteria, as well as leaky gut syndrome.
5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs
6. Hypothyroid type 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into this. Very common!
8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.
9.SPECT (single photon emission computed tomography) brain scan
which shows blood flow and more. Offers much more dynamic imaging than MRIs, which are more static.
10. PTSD Any past traumas including childhood and not in memory.
Hypnotherapy is suggested to uncover any repressed memories and to have them dealt with.
Do not waste any more time, as you risk staying in Limbo for the rest of your life if you stay on the same course.
I really don't mean to alarm you, but I have come across this many times,
and I feel that you have a good chance to improve
The suspected underlying infections and co-infections are treatable,
specially in the early stages, but you also need to strengthen your immune system, for the treatment to be effective.
Let me know if you need further details.
You may PM me any time if you want.
WOW!!! odd how your telling me this bc i was just looking up information on Babesia due to watching "monsters inside me" and realizing my symptoms were so similar...only thing is i haven't had a tic bite since 1994, however i was bitten by some type of spider the summer before and ended up with cellulitis. but last year when i became ill, i found out that the well we were drinking from was exposed due to a huge hole in the side and we were told that an animal could have fallen into it and that was possible what was making me so ill. My husband and kids did recover from most of their ailments but i haven't. I consumed the majority of the water from the well and everyone else drank bottled for the most part.
Thank you so much for all the time you have taken to give me so much information...one more question, what is an LLMD?
Lyme Literate Medical Doctor (LLMD), who are a bit hard to find
specially in states that are not Lyme friendly.
Most people with lyme disease, do not have any knowledge of having had a tick bite, ever!
The contaminated water was probably the trigger for the onset of your issues.
You may need to find a very good parasitologist as well, to rule out with certainty any parasitic disease, if you haven't done this yet.
Extra virgin coconut oil is a life saver, 2-3 T daily, as it is anti-parasitic,
anti-fungal, anti-microbial and anti-protozoic.
Check it out at the coconut research center website.
Wish you well.
I'm going to try and find an LLMD here in Indiana...hopefully it won't be hard as Lyme's is common here as well as so many other auto-immune diseases. I'm so thankful once again you taking the time to answer my post so quickly. It will be wonderful to finally get answers other than it's just Fibro!
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