? For you.....have you ever had Lyme and Chronic Inflammatory Peripheral Disease.
All my testing came back negative. Lyme Literate Doctor believes I may have this disorder. My body is getting weaker. Loosing more strength on my left side.(fingers, hand, and arms) My legs are pathetically weak.. Posted by GretaM (Member # 40917) on :
Teri-does your doc think you have Lyme AND this disorder?
Because if your doc is relying on blood tests for ruling out a lyme diagnosis-get the heck out of there and find an ILADS trained doc.
A LL doc will not rely on blood tests, but a clinical evaluation and diagnosis.
However, if your doc thinks it is Lyme AND the disorder, then what does your doc recommend for treatment?
Posted by Keebler (Member # 12673) on :
- Lyme can CAUSE "Chronic Inflammatory Peripheral Disease" - treat the reason, the cause.
CIPD, like so many other diagnoses, is very often NOT the actual disease but a result of a different issue. The question should keep going back to the underlying CAUSE, not just flipping open a new umbrella to cover the constellation of symptoms.
Your testing for lyme came back negative? That does not mean you don't have lyme. Not at all. If your doctor - any doctor - just drops that because tests are negative, run, run, run.
Does not sound like that doctor is really a LLMD if they don't know that. -
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by Keebler (Member # 12673) on :
Topic: Lyme and peripheral neuropathy - July, 2013 -
Posted by sheltielady (Member # 42710) on :
Keebler I am so stuck! My insurance wont pay for any
treatment unless testing is positive. If it was positive, I
would have a more leg to stand on. I would of gone thru
my primary care doctor,to push the envelope to gef treat
ment.
I got an appt with a CIPD Specialist next Monday in Boston.
I am besides myself.....
Posted by sheltielady (Member # 42710) on :
Keebler I am so stuck! My insurance wont pay for any
treatment unless testing is positive. If it was positive, I
would have a more leg to stand on. I would of gone thru
my primary care doctor,to push the envelope to gef treat
ment.
I got an appt with a CIPD Specialist next Monday in Boston.
I am besides myself.....
Posted by Keebler (Member # 12673) on :
- A CIPD Specialist? Well, at least see what they say, I suppose. See if they can quantify some aspect.
CIPD Specialist? Would that be a neurologist?
But, in Boston, that's one of the most anti-lyme doctor cities in the nation. And neurologists & rheumatologists are the top two professional groups to be anti-lyme and uneducated about other tick-borne disease or other stealth infections. Be aware of that.
They won't likely get to the cause, however, if there may be something to add to the picture, it may be worth the effort.
Just say "no" to any test that might be painful. Seriously. No EMG, no biopsy, no lumbar puncture (spinal tap).
If it is invasive, just say "no" and push for tests that are not invasive and are painless. A patient's right, IMO.
And just don't drink the Kool-Aid (translated: don't take steroids they may likely push).
Also avoid acetaminophen (blocks glutathione in all cells and stresses liver) and ibuprofen (constricts blood vessels).
You don't have to be beside yourself, but I do know that place. Likely, even if you have a positive test, you'd not be able to get adequate treatment with your PCP. They won't have the knowledge, skill or authority for a combination protocol for long enough.
If there is no other way to see an ILADS educated LLMD or LL ND, then, you can strike out on your own to a degree. Many have to do that and many do succeed.
Are you gluten-free?
Avoid all food additives, especially aspartame? -
Posted by Keebler (Member # 12673) on :
- You should stop ALL supplements now if you have an appointment next Monday. Various reasons. -
Posted by Judie (Member # 38323) on :
Did you try a challenge test? This is where you take doxycycline for a month and then test for Lyme.
Negatives will sometimes turn positive when you do this. It worked for me once.
Posted by sheltielady (Member # 42710) on :
Can you do treatment for nerve damage without the koolaid. As the Lyme Doctor did mention that.
I do know of a naturalist women whom treated herself with herbs. She is cured.Remission ((:
What's your thought on having her doing a concoction of herbs. Would it be okay, if approved to do IVIG for mylekn sheathing repair at the same time.
Yes, now of course, my sibblings think I don't have lyme.
I truly believe I do, due to the history of past and what triggered it.
Posted by sheltielady (Member # 42710) on :
No Judie..I never did the doxycycline challenge but I just spent $900 on various lyme testing.
Unfortunately, I don't have a lot of money.
I think I will play it out...):
Posted by Keebler (Member # 12673) on :
- I would stop ALL supplements now until you see that doctor . . . and until other neurol testing is done.
I cannot emphasis enough - not having ANY herbs or supplements in your system during that appointment &/or tests. It's very important. They need to have a very clear picture of you - just you - and supplements can sway what they may see (in one way or another).
I assume you've had CT or MRI imaging of your spine to rule out impingements? (If you do get another MRI, be sure to wear the special ear muffs to help protect hearing).
I would not mix herbs and any treatment for symptoms UNLESS you had some professional guidance from an ILADS educated LL ND -- or have read various articles and books on the subject if you just can't afford an ILADS educated LL ND.
A regular ND could help, to some degree, of course.
IF steroids are required, it is of utmost importance that an ILADS educated LL doctor FIRST guide treatment to go along with that so that it can protect you.
Steroids, alone, can cause all kinds of damage. Even if this might not be lyme, it could be other infection.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. And also how to take safely if a life threatening situation. -
Posted by GretaM (Member # 40917) on :
Teri-
Is there a lyme support group in your area? They would have the best most affordable NDs or MDs in your area, or even neighboring states.
It is important to see an LL, especially with the difficulties you are having. Even if it is just for a second opinion.
Posted by Keebler (Member # 12673) on :
- Bringing those who ponder a reply up to speed with all I find for your history:
You write: "Igenix has been negative. I was bitten back in 1995, engorged tick in back of head. Next day flu like symptoms. Following day, felt great.
2011, major stress in work!! Boom my body has been spiraling since then . . . ." (end quote)
Well, it could be lyme, &/or something else, of course.
As of last week, you wrote you are taking Bicillin shots 3 x a week.
Do you have a doctor guiding that treatment and that you have some kind of diagnosis for that? The neurologist next week should be made aware of that, of course.
Coinfections? You don't say if you've ever been assessed for coinfections. Be sure to consider those, too. -
Posted by Keebler (Member # 12673) on :
- You say your tests were negative. What tests? If Western Blot, IgM or IgG and were there ANY positive or IND bands?
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