posted
I don't know what to think. My LLMD wants me to go see Nuro. I have a lot of nuro Issue, Tremor, Stiffness
Looking back at my IGX results, not for sure if they are positive or not.
IFA 180 - Postive
IGG
30 + 39 IND 41 ++ 58 +
IGM
18 + 30 + 41 IND
I just don't know what to think anymore
Posts: 200 | From Nevada | Registered: Dec 2008
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Dr. J says anybody with band 18 has Lyme. Period. Even if that's the only band you have.
He has treated thousands of Lyme patients.
Did you see Under Our skin? Where the young ball player was diagnosed with PD, but he treated with abx and it went away?
Posts: 1142 | From South | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- � First, as Hambone replies: your test with symptoms very clearly points to lyme.
� Is your LLMD ILADS-educated? Does he keep up with ILADS seminars, etc.
� What is your LLMD doing to help support your liver & kidneys and an overall good detox plan?
� Has your LLMD address issues of heavy metal toxicity (that nearly always goes along with lyme and can cause tremors, etc.?)
� Have you been assess for other tick-borne infections AND for other chronic stealth infections such as Cpn, HHV-6, mycoplasma, etc?
� Have you been assessed for any of the porphyrias? (see link to follow).
� Did you get an MRI or SPECT scan?
� Are you on a gluten-free diet?
� Are you eating LOTS of leafy greens with EVERY meal, even breakfast? Things like kale, chard, collard greens. Salads are not as good as lettuce is just not as substantial as the denser greens that you steam lightly or saute.
� Is your environment scent-free and chemical-free?
� Is most of your food organic? In addition to stealth infections, pesticides are a major cause of Parkinson's symptoms.
� Do you have any mold exposure?
-- no need to answer but each on of these must be addressed. And, if your LLMD is not ILADS-educated, I would find one who is as soon as possible - and
� Is the neurologist you are to see lyme literate? If not, that can be a huge waste of time and money. Sure, not everthing is lyme (but your tests sure do indicate lyme) - but - not all symptoms are necessarily from lyme (although tremors sure can be) -
- but - if the neurologist is not LL, they will have no solid frame of reference and are no better than asking the guy over at the dry cleaners what he thinks (oh, but do avoid dry cleaners as those chemicals can cause - or contribute to -Parkinson's). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Uh..what is PD?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Parkinson's Disease (which is often caused by lyme or other chronic stealth infection, heavy metal toxicity - and/or pesticide poisoning . . . along with other matters of liver and kidney damage/dysfunction). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See the "Secondary Porphyria" post first; then the KPU/HPU posts. -----------------
. . . LD has been documented to cause strokes, paralysis, a variety of seizures, transient or permanent blindness, Parkinsonian-like movement disorders, motor and/or sensory neuropathies, mononeuritis multiplex, radiculoneuritic pains, meningitis and encephalitis.
It has been affiliated with Lou Gehrig's disease and the Guillain-Barre Syndrome. . . .
. . . The more commonly noticed neurologic deficits involve one or more cranial nerves (I thru XII), . . .
. . . Lyme hepatitis occurs in approximately 15-20% of patients. . . .
[poster's note: the hepatitis mention is included as the liver is connected to toxicity that can cause tremors, etc. There is so much more in this article that explains so much.]
The Complexities of Lyme Disease - A Microbiology Tutorial
- by Thomas M. Grier M.Sc.
If you search his name, you will see that he just finished a series of 5 more articles. But I'm not organized to remember how I filed those. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I see one of the LLMD refered from this site. He has never mentioned any of the thing you said.
The Nuro is also LL again from this site.
I'm so upset and don't know what too think any more.
I'm currently have a PPIC line on Rochpen. have 4 more months to go
Posts: 200 | From Nevada | Registered: Dec 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
For a second opinion, I would only see a Lyme Literate Neuro. Otherwise I think you will be wasting your time. Even the best neuros with the fanciest titles will not be able to clearly assess if they are not truly 'Lyme Literate'.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, breaking from fact finding to offer some emotional support, I'm so sorry it's so confusing and so hard to get really good treatment that covers all the bases.
I'm far to tired to really ever say the right words from an emotional place that will leave you feeling hopeful and refreshed but that is my wish.
Not all names from here are necessarily LL. You have no way of know just who anyone is who sends you a PM.
Glad to hear that the neurologist is (said to be) LL.
FIRST: Inquire at your area Lyme Support Groups - AND the Chronic Fatigue support groups AND the Fibromyalgia support groups about the neurologist. See how those patients have faired with him. You might also contact the MS and PD support groups as to his reputation.
If the neurologist is truly LL, that could be very good. Can you go back to whoever PMed you in the first place for more details? How did they come by that name, etc?
Certainly, that you are on IV Rocephin indicates that your treating doctor knows more than the average bear at lyme. However, with the dietary, environmental and "detox" support, rarely will just antibiotic treatment work.
If you've never been instructed to do liver support, THAT could explain the tremors.
But I really just have to stop now. Wish I could bring my thoughts to the page. Others will come along and share thoughts, too. When I get some energy, I'll be back with a one hour radio interview where Dr. K explains Parkinson's patients with lyme have WAY more pesticide exposure, etc. and if that if the detox part is not addressed, lyme treatment can fail.
All the stuff I mentioned above is pretty standard for most LLMDs. Although, there are a few who stick just with antibiotics and ignore the toxicity issues. A few people do manage sometimes, but not often. Support is vital.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
Also included are basic links explaining the principles of herbal medicine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by saved10: I see one of the LLMD refered from this site.
The site doesn't have an official list of practitioners. That would be a legal nightmare if we did. There are members who keep lists and send out contact information for doctors.
If I were looking for a doctor, I would get the list, then post - "does anyone have experience with Dr. X in NY?" in order to get first hand recommendations.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm only positive on band 18, too and all my shaking went away after about 3 months of treatments. ALL of it.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
I do not see the logic, from a mother let alone a trained medical doctor, that would explain why anyone would tell you that you have PD. You have clear evidence of exposure to Bb. And you are sick with symptoms of an infection that is known to cause PD-like symptoms.
In this case I think both a mother and your doctor would feel the same - helpless. Your doctor wants to throw in the towel. Which is his/her choice. A mother cannot throw in the towel, nor can you.
I am no doc. But if it were me I would treat the infection you know you have.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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