Today I got back from my LLMD appt. I test positive according to IGENEX for IgG, but not IgM.
Along with that, my symptoms aren't classic of LD - I don't have chronic fatigue or pain.
While many here might say 'lucky her' my other symptoms are really terrible.
I have: terrible dizziness and lightheadedness, chest pain, palpitations, breathlessness, and tachycardia usually on a daily basis. Occasionally, I have head pressure/pain, chills/face flushes, and tightness in my throat. I have experienced numbness in my face and leg but that was a few months ago.
I have been to many specialists (cardiologists, neurologists, etc) who were all stumped/ no conclusions.
The doctor said I'm definitely not a classic case which leads him to be unsure of whether or not it is Lyme necessarily
OR
possibly viruses - I have tested positive for mycoplasma, HHV6, cox-sackie, and parvo-virus. He says my titers are high, esp. for parvo.
So, I take a lot of supplements, including those to build the immune system (olive leaf extract, arteminsin, and thymic protein A) but have not noticed any improvement.
My c4a level is high, I did test positive for lyme IgG with igenex, and mycoplasma so he says those are indicators for lyme, but it's still not definite.
When trying to start abx last month (ceftin) I had a severe reaction, poss. a herx although my family dr says "serum sickness", but I felt like I was going to die, and so I have not really been on them since. Cut the dose in half, then every other day, now nothing.
Just looking to hear if there are people out there with similar situations who have been diagnosed with lyme and successfully treating it. Or maybe others in a similar situation as me with the virus thing and what you did about it.
Thanks so much if you have read to this point!
Posts: 82 | From NJ | Registered: Mar 2011
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posted
Hey Bridge! Sorry to hear you're not finding the right cocktail of meds yet. I honestly know how frustrating it is to just NOT KNOW what's going on in your body. I think people here on LN understand that more than anyone!
Reading through your concerns it sounds like you're on the right track. My dr loves analogies and she compared treating Lyme/co to treating a broken down car. The car may have a dead battery, bad spark plugs, alternator's bad, no fuel and the oil is low. You can put a new battery in but the car still isn't going to run. Fix the spark plugs but there's still no gas...
You get the idea. I think the nature of the beast of Lyme and coinfections is that it takes so much time to treat 1 thing at a time. Then you add parasites and heavy metals into the mix... AAAHHHH!!!
Have you tried any other abx? I respond very well to herbal supplements so I'm on lots of them, I know we've chatted a bit about that before and I'm glad you're working with them too
Have you treated the mycoplasm with doxy? That alone did HORRIBLE things in my body. The tightness in my chest and resp probs were really bad. I know it can cause a whole heap of trouble!
This is only my opinion but it sounds like your immune system is on overload and is being over-run with too many infections. Chip away at them one at a time.
I have to remind myself everyday, slow and steady wins the race!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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I tested positive on Igenex by IFA. I never had joint pain. My fatigue was only PM fatigue. I always woke up refreshed and made it through the work day fine. I pretty much had every other symptom though. A friend of mine who also had Lyme also never had the joint pain or crushing fatigue. She had primarily anxiety and head neuro symptoms.
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
No joint pain and/or fatigue here...all neuro and cardiac.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
No fatigue at all, no joint pain. I think my wrist hurt for a few days and that's it.
Mine is all nerve related
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Thank you everybody who has responded~!! It definitely helps to know that I'm not 'the only one.'
Chiquita - I actually was told yesterday that my reverse t3 *thyroid hormone* is higher than my t3 and it should be the other way around. So you definitely hit it right on the mark with the thyroid business - I'm sure it's not helping the cause. I will probably be going back on natural hormone t3 soon. Thanks for your links too!
Elkie - Yes, we have chatted! And you're right, it's just a whole lot of stuff to deal with and not knowing which one is causing which symptoms complicates everything. Fortunately, I'm seeing 2 other lyme doctors in a month so I'm definitely going to getting their opinion on the mycoplasma and doxy. In the meantime though, my current dr really wants me to give the ceftin/flagyl protocol another try. He told me yesterday I won't be successful if I keep backing off the meds, skipping doses, etc.
Koo, tri, and backin - Thanks so much. Sorry you have to have these terrible neuro/cardio symptoms too )-: But again, it's at least re-assuring to me, that there are others out there like me. Any particular med or supplement in particular do you think helped your dizziness or heart-related symptoms? Thanks!
Posts: 82 | From NJ | Registered: Mar 2011
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