Based on varying test results & symptoms, where to go from here?

After struggling to get specific answers, I now believe after piecing all pieces of puzzle together that I have some kind of Lyme infection. I came down with rash on my elbow a year ago- didn't notice a bullseye but it otherwise looked similar to EM rash (tick). I then came down with frozen shoulder in the arm with rash. Then, later on had stiff neck and pressure headaches and a short flu like virus. Itchy arm like I had bugs but no bugs, a tight scalp feeling like my hair was being pulled or yanked. Fast forward few months later after staying in a hot climate area, other strange symptoms began. Had tender gland area that hasn't gone away. My other arm began to hurt, then my quad areas, then soles of feet, everything seemed to feel inflamed shoulders, neck, weight loss, hair loss, weird bubbling popping sensations in calves, abdomen, then pin prick toes (was short lived) then pulsation like feelings in arms, legs, occasional back/side of foot area, etc. - they are more noticeable when still or lying down. Have had a few times of eye floaters but now currently. When I bend down I feel a mild sense of being off kilter, no falls, no tripping or gait issues. All these changes caused me great anxiety, thinking I have a progressive disease. Fast forward to now: well over $5,000 out of pocket appointments, tests and have various results, most recently tested positive for Mycoplasma Pneumoniae and have 6 IgM active/recent positive bands (58,60,64,66,72,93) with band 41 saying indeterminate had some activity. A prior test showed IgG band 18 and IgM band 39 - neither of these showed on this test. Anyhow, just wondering where to go from here. Can't get in w/Lyme Specialist until March. NP goes off of CDC requirements so I'm at a loss, worried and frustrated. No diagnosis of arthritis, ms, lupus or fibromyalgia as my test are normal except my CD57 was low 24. I have not had a brain scan yet. I've been taking tinctures and supplements which might be keeping things at bay but hasn't removed symptoms.

Post Edited (AmyG1973) : 11/14/2019 10:06:18 AM (GMT-7)

You sound like you really need to get in with a LLMD/provider.

You sound like you have Bartonella in that mix with the soles of the feet.

If you can't get in w/one til Spring. Have you looked into any of the Lyme Herbal protocols? Also have you considered seeing anyone else like a DC or Naturopath that could help you manage these symptoms? Thanks!

This sounds almost certainly like Lyme to me. The Western blot results, the mycoplasma results, and the low CD57 are all very loudly pointing toward Lyme (and co-infections). I wonder if there is a Lyme specialist near you who simply does not advertise as such; many practitioners of functional medicine, integrative medicine, or who describe themselves as holistic are likely to know how to address Lyme or might know someone who does. I'm sure by now you have read about how deeply unreliable Lyme testing can be and how incredibly obtuse the CDC criteria are. I sincerely hope you do not have to wait until March to see someone "Lyme-literate," but if you can't find an alternative who can see you sooner, then I would consider treating yourself with one of the herbal protocols that are easy to access, and learning as much as you can about the various approaches to treatment. A couple of solid places to start:

RawlsMD.com
treatlyme.net

Good luck! Please feel free to ask questions here, search through past threads using the search function, and check out the discussion called "New to Lyme?" We're here for you!

Also, if you want help finding a(nother) practitioner, then you could start a new thread titled "LLMD near [your city]."

Hi Amy - welcome to the forum


“have 6 IgM active/recent positive bands (58,60,64,66,72,93) with band 41 saying indeterminate had some activity. A prior test showed IgG band 18 and IgM band 39 - neither of these showed on this test.”

Bands 39 and 93 are lyme “specific” meaning only lyme causes those to show up on a Western Blot.

Those test results are enough to back up a clinical diagnosis of lyme. (Your symptoms and EM )

I also had frozen shoulder - it was my first symptom. But I didn’t even consider lyme... then a ton of more symptoms ...

I wouldn’t want to wait until March - you can start a new thread to get help finding one that can take you sooner.
But of course it’s up to you.

I have recommendations for LLMDs in Boston, Brattleboro, and Northampton if you are interested in driving that far from NH. Email me if you are interested! For now, it sounds like you are on some good supplements.

@Girlie Thanks for responding to both my posts with not knowing what to do or where to turn. I'm kinda burned out even on the Naturopath appointments because each time it begins to feel like it's just a way for them to make money off of adding 2 more supplements, I can't even keep up with all I am supposed to take. At this point feel like I need a combination of Abx and natural protocol. I've also considered Iverectin for dogs but that is strong and scares me, as I already think I've been hit with nervous system stuff either from Lyme or Mycoplasma; not totally sure since my tests varied - but like you, I feel like I have enough bands for clinical diagnosis especially with symptoms and no other reason to what happened to me. I've never been one to frequent the MD office and don't get sick often - rarely get colds, in generally good health but I do think my gut for whatever reason isn't as strong as should be- even though I've done clean eating for many years.

How did your appointment go?

I know what you mean about appointments with doctors who are very into supplements. I'm very into them myself, but one doctor had me on 45 things per day, some of them multiple times! I was having trouble eating as it was, and there's no way to do that on an empty stomach. One day I stopped all of them and just worked them in slowly in order of the ones I thought helped the most. I still take a fair number of things, like maybe 20 things, but not every day.

And I like how you described the twitches as constant reminders that something nefarious is inside of you. It's such a relief when one of those reminders chills out for a while!

Email me (click on my name to see my profile and use the email address listed for me) if you still are interested in the docs I have seen or at least heard good things about in VT and MA. It's very hard to find someone good, I'm afraid. (We can't post doctor names on the forum, only initials.) In Brattleboro, AC; in Waltham, EL; in Newton, AB.