I am 4 months into seeking a diagnosis for multiple neurological issues and I am suspecting if not hoping it is a lyme infection as opposed to something more sinister.
Symptoms: tingling in hands, feet, face and head - comes and goes neck stiffness and joint pain in neck/upper spine muscle twitching around body, 24/7 muscle twitching in both calves brisk reflexes difficulty swallowing - comes and goes
tests done: MRI of brain and spine - normal
EMG and Nerve study - normal
Lyme test through Lab Corp - IGM positve 23,41 IGG negative
Barium swallow test - normal
hormone and cbc blood tests all normal
Igenix full test - IGM positive - 23+,41++,93+ IGG Negative - 18pos, 30ind, 39ind, 41 + Postive for IGM Babesia Duncani IGM - 80 equivical IGG Duncani - 40
I already took 3 weeks of 200mg per day oral doxy in August. These symptoms started in July and have moved around. I fearful of an ALS diagnosis but at my age (37) it would be a very rare. I have currently having neck pain and twitching all the time. Any opinions, advice or information would be greatly appreciated.
I have read that if I truly had Lyme it would show up on an IGG test after several weeks but it has been months now and it is still negative even by IGenix standards. I had the Igenix test done in mid september, 2.5 months after it started.
(breaking up the paragraph for easier reading for many here)
[ 10-25-2018, 04:18 PM: Message edited by: Robin123 ]
Posted by hiker53 (Member # 6046) on :
My Lyme test took 18 months to become positive.
Looks like you do have Babesia and may have Lyme, so I would find a LLMD and treat. Sometimes antibiotics will stimulate the test to become positive.
Also, 200 mg of Doxy for 3 weeks is not enough time and not a high enough dose.
Blessings.
Posted by Keebler (Member # 12673) on :
- Sorry to hear of this ordeal.
You say: " . . . I have read that if I truly had Lyme it would show up on an IGG test after several weeks . . . " (end quote)
I'm sorry to say, too, that the source you were reading for that is wrong. It's best to look at the sources in the next link. Do not rely upon any of our government sources such as the CDC, NIH or IDSA. Those groups' misinformation will be explained as you progress with information from the real experts.
It's very confusing and most doctors have instilled in their training ignorance about lyme and tick borne disease (TBD from here on out).
Lyme is not the only TBD to be concerned with, clearly by your test results. And, with the others, it's even more confirmation that lyme is likely on board. These do not travel alone.
One step at a time, though. None of this will be easy yet it's going to get easier if you can connect with a real lyme literate MD (LLMD). Most insurance does not cover this -- another casualty of the politics.
See film: UNDER OUR SKIN for explanation about all that.
Anytime you get overwhelmed, remember: one step at a time.
And, very often, that's more about: are you eating properly? Did you skip a meal or cut back on sleep? Real food is your fuel, for starters. Rest when you feel the need, even if that is all the time. Intersperse nature, music, friends, hope. -
Posted by Keebler (Member # 12673) on :
- BASIC LYME & TBD* LINKS
[* TBD = Tick Borne Disease, of which there are many]
For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations. What patients call a "LLMD" a lyme literate medical doctor and why that matters so much:
- While you sort out your next step with a proper LLMD, if at all possible . . .in addition to good nutrition and a low sugar diet (wheat free often very helpful, and avoid all alcohol, colas or diet drinks, too) . . .
may be very helpful to manage some symptoms, though they are not direct treatment for infection, just to be clear, they are excellent to consider for anyone with the kinds of symptoms you describe and most who have lyme / TBD need them.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Milk Thistle is a top liver support. Green Tea is a nice beverage that also has some good support properties.
Links here, too, on how to find a LL ND (naturopathic doctor) and books by Stephen H. Buhner, a top LL author / master herbalist. -
[ 10-23-2018, 12:30 PM: Message edited by: Keebler ]
Posted by kidsgotlyme (Member # 23691) on :
Zulu, unfortunately, Lyme and CO can be pretty sinister
You have come to the right place to find answers though.
Posted by sixgoofykids (Member # 11141) on :
It appears that you have Lyme, though I'm not a doctor, but with a positive test and a positive babesia test, that's what it looks like.
Three weeks of doxy is not enough, especially at that lower dose.
The whole IgG vs IgM thing doesn't work for Lyme. The way borrelia replicates makes it normal to always only be IgM positive. The ONLY thing testing shows anyway is whether you were exposed, not whether the disease is active.
You need to decide whether you want to go a natural route or a pharmaceutical route and choose a doctor accordingly.
Posted by Robin123 (Member # 9197) on :
Sounds like Lyme - I'll address some symptoms -
The muscle twitching means you're low in magnesium. We have threads here on the topic. You can use the Search function at the top of the page to type in "magnesium," click on Medical Questions section, and you can read any archived discussions.
It's important to know that we're all different when it comes to what works for us, including brands, so it's always a matter of finding out.
Re the neck pain and swallow issue - I'll just say for myself, I'm a chiropractic patient and know that pinching of the nerves in the neck can affect us. For me, the swallow area is affected by a subluxation (out of place) of C4.
My neck is always helped by chiropractic care, but I'm doing more than that - I take magnesium to soften muscles, and I do deep tissue work on the muscles to soften them. I recommend starting any deep tissue work only after seeing a great neck chiropractor and being on a good magnesium supplement. Also worked on keeping good posture early on.
You can feel better - it's a process of working with a good Lyme-knowledgeable doctor and discovering what's going to work for you.
Posted by Sammi (Member # 110) on :
quote:Originally posted by Zulu2838: Lyme test through Lab Corp - IGM positve 23,41 IGG negative
Igenix full test - IGM positive - 23+,41++,93+ IGG Negative - 18pos, 30ind, 39ind, 41 + Postive for IGM Babesia Duncani IGM - 80 equivical IGG Duncani - 40
Both your IgeneX IgM and LabCorp IgM are positive, and you have several Lyme-specific bands present on the other tests. You need to see a knowledgeable doctor for treatment and evaluation of all the co-infections.
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