posted
I'm new to this board and to learning about Lyme. I've never had a Lyme test and only after going to doctors for many years, spending tens of thousands of dollars being treated for other conditions, and not being helped have I begun to look into Lyme as a possibility.
I would like to get the most comprehensive testing available right off the bat. Assuming money is not an issue, what testing would you recommend? So far I'm liking:
CD57 KPU/HPU SpiroStat Lyme panel with Babesia SpiroStat Fungi testing MyLyme Immune ID Comprehensive from NeuroScience
These are all offered on the website forresthealth.com under Lyme testing. I have had phone consults with this doctor and really like him, and he recommends these particular tests.
Do these tests look comprehensive to you? Is there anything I should add? Take away?
I should also briefly describe my symptoms: Severe, chronic insomnia Severe, body-wide RSD (Reflex Sympathetic Dystrophy) with a whole range of neurological symptoms--burning pain, dizziness, lightheadedness, temperature control issues, etc. Hair loss Anxiety, irritability, hyperactive mind, etc.
I know Lyme can never be definitively ruled out, but I want to come as close as possible to ruling it in or out, know what I mean? My symptoms are severe and I'm desperate for help.
Thank you!!
Posts: 4 | From east coast | Registered: Jul 2012
| IP: Logged |
posted
Maybe also add an IGeneX Western Blot for both IgG and IgM
Keep in mind that some of us need the KPU supplements but don't necessarily have KPU. I took the supps for a couple years because they muscle tested well for me, but after I got my body back in balance, I no longer needed them.
I'd get a thyroid panel done.
Maybe iron checked, hemoglobin and ferritin, as anemia can cause fatigue.
I don't know if they can check for iodine levels, but I know that iodine supplementation was great for me. I take one drop of Lugol's daily.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
The MyLyme Immune from NeuroScience includes the WB for IgG and IgM, which I like. One thing I'm not sure about is whether or not it tests for 10 bands of each like Ienex does or three like most other tests. I'll have to call them and find out.
I've been thoroughly tested for thyroid conditions and most everything else that my primary care doc will agree to test for (and she's pretty agreeable to whatever I want). All thyroid tests are always normal, though my TSH does fluctuate a lot, but always within 0.5 to 2.5.
I've had a full iron panel, except ferritin which was just tested and I'll get the results soon. Iron is on the low side but not abnormal, just not optimal. I'll probably look into iron supplements soon.
Hemoglobin was 12.7 last checked.
Funny you mentioned iodine--I'm doing an iodine test tomorrow through ZRT Labs.
Thanks for the info--will keep all of it in mind.
Posts: 4 | From east coast | Registered: Jul 2012
| IP: Logged |
posted
Keebler--awesome info, thanks. I do have adrenal issues which I'm addressing. Have done all the comprehensive at-home saliva and urine tests. My cortisol is low during the day and high at night. My adrenal, pituitary, and sex hormones are all at the very low end of the "normal" range. I'm doing more testing in this area over the next month.
Lymetoo--oooo, I like that culture test. Will definitely do that one, thanks. I need to make sure babesia and bartonella are included in the tests I'm already getting--the doc said they are.
I want to make sure any supplements I take aren't wasted money or, worse yet, making everything worse, you know? I do eat a low-sugar, mostly organic whole foods diet and exercise as much as possible everyday. The problem is I have to take such a high dosage of Neurontin to kill the nerve/RSD pain that I experience a whole host of unpleasant symptoms from that on top of everything else. Sigh....
Posts: 4 | From east coast | Registered: Jul 2012
| IP: Logged |
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Which thyroid tests specifically have you had? TSH is not particularly reliable on its own.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
I've had TSH, total T4 and T3, Free T4 and T3, reverse T3, and all thyroid antibodies. Everything is always within the normal range, though probably not the optimal range. My impression is that TSH is kind of useless for thyroid testing and is more an indicator of pituitary health, so I really pressed my doc to do the additional testing.
The reason I'm turning to Lyme testing at this point is because I've had sooo much other testing and spent sooo much money on doctors, supplements, and therapies that just didn't help. There must be something else going on, something that led to the insomnia and now the RSD, and all the other awful symptoms. Lyme has been bought up as a possibility by several docs I've seen over the years but it's never been tested. I am SO ready to get this testing and hopefully get some answers.
Posts: 4 | From east coast | Registered: Jul 2012
| IP: Logged |
The MyLyme Immune from NeuroScience includes the WB for IgG and IgM, which I like. One thing I'm not sure about is whether or not it tests for 10 bands of each like Ienex does or three like most other tests. I'll have to call them and find out.
- Make sure about that. Igenex has the best WB in my opinion.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic