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Chronic Lyme or...? Ideas or advice welcome!

post #1 of 8
Thread Starter 
After many months of research- and feeling less than 100%, I'm ready for some answers!

In the summer of '07, I developed a rash on my arm - not a typical lyme rash, just red, itchy spots. I visited my ND & she suggested a lyme test, just to be on the safe side. To our suprise, the test came back positive - I started on a 10 day course of abx. Prior to the rash, I had been hospitalized for dehydration (resulting from what seemed to be the flu) - while there, they thought I had a UTI and started me on a broad spectrum abx. After being released, I was readmitted two days later because I was having trouble getting a deep breath and felt incredibly weak (dh had to carry me to the bathroom). It was determined that I was probably coming down with pnemonia. The UTI culture indicated that I did not have a UTI, so my abx was switched to one to fight the pnemonia. Two weeks later, the rash showed up. *I have to write that this was all incredibly suprising to me, as I am usually very healthy - this was my first ever hospital stay, etc.*

Anyhow, the midwifery practice wanted to run my case by the Head of Infectious Disease Dr, because of the multiple abx I was on (and they were covering their bases, too, I suppose, as I was planning to give birth in their birth center in 2 months). My meeting with the DR was interesting - in short, he felt that because I had a non-typical rash and (assuminng I had "the flu") did not have lyme syptoms, I did not have lyme. He was concerned about exposing me to too many abx while pregnant, and advised me to discontinue to prescription ( I was 6 or so days into it), which I did. He did, however, say "If you ever present with lyme symptoms in the coming year, be sure to follow it up with your DR." Oh how that phrase has haunted (and perhaps will help) me!

Fast fwd to two years later. I came down with what I believe was the flu last October - started with chills, went to body aches, congestion, headache, etc. It took me awile to feel better. My ND gave me a nettle-based tincture which helped a good deal. However, it seemed to take a long time to get my energy back - weeks. I had bloodwork done - my D was low, so I started a supplement and felt better. The winter progressed - I felt better, but was going through a lot of stuff...

my DH is self-employed and his business was really suffering - we had to go to our savings to pay bills, and really cut back. My close friend and I parted ways after a sad misunderstanding - our friendship was a real rock in my life, and it was a hard loss. Our Pastor retired and I was chairing the new search committee - lots of stress! - while grieving his departure. Another close friend's DH lost his job, and they moved in with family members across the country. Finally, in March, our house was hit by the hard rain in New England - we were evacuated and moved in with our IL's for 10 days.

Not suprisingly, perhaps, I started to feel not-so-great in the midst of all this. It started with a back-ache, and progressed to fatigue, and depression. I had what seems to be "brain fog" that settled in. I had two massages, but no relief. I met with my ND, who spoke of many possibilities - stress and lyme included. At some point, I noticed my right side would be sore, and I began seeing floaties in my right eye. My face began tingling off and on. I saw a holistic health practioner who did some energy work - I felt better after a month of sessions, but not 100%. It feels hard to breathe sometimes, like I can't get a full, satisfying breath.

Overall, I have continued on an upward trajectory, but still do not feel really great. I have days where I am randomly tired, and still see floaties. I often have trouble finding the right word, but do not have that brain fog that accompanied teh depression. I have been seeing a chiropractor, and have pretty much eliminated the back pain (we were in an accident last summer - deer hit the car, I was in the passenger seat and likely got whiplash, though I felt "fine" then and did not seek treatment). My face tingles and feels numb sometimes, as do my fingers and parts of my legs. The breathign "thing" comes and goes. I just don't feel great, and want to - no depression since April-ish, and no constant fatigue, just random. My ND and I continue to meet every month, and I have a homeopathic remedy for stress, though I am really beginning to question the "stress" diagnosis we seem to have settled on - things have evened out - DH has a lot of work, my friend moved back to the area, etc. I'm just not sure if all of the remaining "symptoms" are just that - remainders of a hard time, or are actually little spirochetes (sp) trying to give me a message!!

Thank you for reading this novel (!) - I have combed through the chronic lyme thread and am wondering - is this it? I recently came across "Healing Lyme Naturally" at the library - it is truly an inspiring book. At this piont, I'm wondering if I should just do a teasel treatment, or push for an Igenix test, or simply support my body and give it more time to heal. I currently take 4000 IU of Vit D, a Vit B complex, and recently started Bioplasma. When this all started, my research here led me to a more TF kind of lifestyle (though I do occassionally have grains and sugar). Just wondering what to do and thought I'd see if y'all have any ideas. Thanks so much!!
post #2 of 8
In my experience, natural remedies do SQUAT for Lyme Disease. You don't want to rely on just that. Long term antibiotics would be the way to go. 10 days of antibiotics would not get rid of Lyme Disease. Certain kinds of antibiotics aren't effective at getting rid of Lyme Disease either.

Have you been tested for other tick borne illnesses such as Ehrlichiosis, Babesiosis, or Rocky Mountain Spotted Fever?
post #3 of 8
well, stress certainly makes lyme flare. I would have to agree that 10 days is not an adequate round. I would also wonder if you've been tested for co-infections. You seem to have some CNS symptoms and I'd want to know if anything besides lyme was present.

That said, you have several options in terms of how you proceed. It seems like you are more inclined to go the natural route. Are you working with someone who deals with lyme regularly? Are they successful? What are their tools? This is one condition for which I feel like you need a practitioner on your side. There are too many symptoms, it behaves in such a strange way that I really believe you need another's eyes on the case.

Dietarily I'd avoid all grains and sugars, which borrelia seems to love. I would definitely find ways to manage stress (supplements, herbs, exercise, acupuncture, homeopathy...whatever calls to you) which won't fight lyme, but it will make it less likely to flare. You say you are on a remedy for stress...but I'd be looking at a remedy to support YOU, not a state. Even then, you'd still need to address the actual infection.

You can take a look at healing lyme. It's a decent book, though not complete as far as I'm concerned. I'd also target your case individually with the salts, bioplasma won't be enough. Also, are you taking 4000 IU's of D daily? Have you had an evaluation of your current levels? Good luck, this is definitely a challenge!
post #4 of 8
Please research using Teasel to treat Lyme Disease. I wish you a speedy healing!
post #5 of 8
Quote:
Originally Posted by wombjuice View Post
Please research using Teasel to treat Lyme Disease. I wish you a speedy healing!

This is what I have the most success with.
post #6 of 8
Where are you? Maybe one of us could recommend a doctor. If you've already had a positive lyme test, than I don't think the Igenex test would do you any good (someone else can correct me if I'm wrong) because if you've already been positive, you have the antibodies, so even if you kicked it, so to speak, it would still show positive. At least that's my understanding of it. I'm doing a combo of natural/abx (and my children are too).
post #7 of 8
Thread Starter 

lyme

Thank you everyone! So much to process... I really do appreciate the thoughtful replies!

Interestingly, I'm in one of those times where I (almost) feel "fine" - feeling very grateful for that, but waiting to see if the same old symptoms will come creeping back up... I know that lyme "cycles," but can they be irregular cycles (i.e. my fatigue has been on a 3 or 5 week mini-clycle, rather than the 28 days I have read about)? And is it possible that my body is doing a pretty good job fighting it off, but just enough spirochetes (sp, I'm sorry) survive to manifest in, say - tingling in face & fingers on and off for a few days, then seeing floating things in one eye a few days later, etc. My two friends who have had chronic lyme (and who are now 99.9%!!!), were SO sick, it is curious to imagine the difference in severity. That said, the symptoms themselves seem to fit so well, and there are some days that are worse than others. I'm an optomist by nature, so it's a tricky thing to navigate!

Anyhow, yes 4000 IU of D daily for the last 8ish or so months. Interesting sidenote - since starting D, my teeth feel so much better. I need to go as my DH and DS are waiting for me to go on our nightly walk - truly, thank you so much for your replies, and I'll keep checking back!

PS can't go w/o writing one more important detail! My DS nightweaned in the midst of the early spring craziness - this is when he did most of his nursing (about 4 times/night). Since then, he is slowly weaning himself (he's now 2.9) - how much of a role can up and down hormones be playing, and how can I find out?
post #8 of 8
I had a flare up within a month of when my daughter stopped nursing regularly. I recall reading something in the news that women who have MS often experience flare ups soon after their child weans, due to hormones. I figure the same applies to Lyme Disease.
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