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Mommas with Lyme Disease <3 - Page 15

post #281 of 369
Quote:
Originally Posted by bluebirdmama1 View Post
Homeopathy and teasel for my son and I has been amazing. We did one more round of teasel 2 weeks ago, and there was a noticeable release for me. Health issues and digestion have changed even more for the better. Gluten in the form of spelt is BACK in small amounts and no ill effects!! So many more positive changes too (like potatoes)

The good thing about teasel and homeopathy is if you don't really have lyme, there is so side effects from using it. It can only do more good for the body. I respect others that take abx, but if you are not sure you have lyme, taking abx does do alot of harm nothing else. Still I respect others that feel the need to take abx as lyme is tough for all of us to live with.
All this talk of teasel and I wasn't sure what it was. I opened my mailbox today and someone sent me a bottle of teasel through www.abundancebymagic.com. That was the most thoughtful, nicest thing anyone has done for me in so long. And I really needed it (found a lump, had mammogram and ultrasound last Friday, doctor got me into specialist for this friday, need a biopsy). I feel so warm & fuzzy now.
post #282 of 369
How wonderful Kathy! I'm sorry to hear about everything you are going through, but your positive attitude will go MILES in getting you through this! Much love headed your way, sistah!
post #283 of 369
Is anyone in this support group getting tested for XMRV? The new retrovirus linked to chronic fatigue syndrome, autism, neuro immune illness and prostate cancer? If so, would you be interested in starting a support thread for XMRV?
Our test results aren't back yet but I'm preparing for the support we might need.
post #284 of 369
Reading. Newly dxed with chronic Lyme
post #285 of 369
Quote:
Originally Posted by Pattyla View Post
Reading. Newly dxed with chronic Lyme
Hugs.

You mentioned your kids have weird symptoms. I'm just wondering what they are?
post #286 of 369
Ok I have just finished this great thread.

First me. Grew up in CT. Most of my family has had Lyme at least once. (my parents 2-4x each). I live in MO now (and have friends here who have also gotten Lyme.) I am 99% sure I have lyme. Lots of symptoms. And I test + for band 41 in both kinds with Quest running the test. No syhilis or periodontal disease so very likely lyme. I've waiting for my Igenex results. They should be in any day now.

My Dr doesn't treat Lyme and has run every test under the sun on me all coming up empty. Even my former adrenal fatigue is almost completelly normal! (just my late night # is a bit low) I'm on thyroid meds and have been for several years.

The contenders for when I got Lyme are ~98 when I visited CT in the summer and returned home and had a flu like illness. Dr I saw at the time said "no bulls eye, no lyme" and wouldn't test me or anything. I figured if I really had Lyme I wouldn't get better and I did so I assumed he was right. Then when my older dd was 9 mos (2004) I found 2 engorged deer ticks on me. Dr would have treated prophylactically but since I was bfing she didn't want to. Never had any symptoms or rash. Then fall of 2007 while pg with DD#2 I found an engroged tick on my foot while visiting CT. I sent it to the testing Lab at the University of CT and it did not have lyme, but I never tested for any co-infections. I had no idea until recently that it can stay dormant for some time w/o symptoms/bad symptoms.

So now I have felt since feb like I have been hit by the flu and just started to recover. You know how you feel that first day when you know you are getting better but you are still weak and have lots of symptoms? Thats how I feel nearly every day.

Achy joints, achy muscles, extreme fatigue, brain fog, stammering, slurring words, confusion, I can't follow intellectual conversations, I can't make sense of Buhners book (not something I usually would have any trouble with). My muscles get tired very easily just climbing the stairs wears me out. Stiff neck, I have had some severe muscle spasms. One memorable one flattened me (literally) while I was trying to buckle my toddler into her car seat. Took me 2 weeks and several different approaches to get that one better. Another one was for all appearances a femoral hernia but turned out to be nothing and went away after several days. I have also been to the ER for apparent appendix pain that disappeared eventually and showed nothing. I go through phases where things are much worse. I'll get horrible cramps in my feet and legs that will get me out of bed several nights in a row and then nothing for months. Sometimes I'll get them while driving and have to pull over and stop and they will last for an hour or more. They are excruciatingly painful. Now I have stiff hands/fingers, I have just started headaches after years of rarely getting them (I got lots of migranes when I was a young adult but hadn't had any in years till about 2 weeks ago.) Bells palsy 3 weeks ago. And nausea nearly every day for the past week or so. Doesn't seem to matter if I'm hungry or full or whatever with that. Terrible recall too. I attended a baby shower for a member of the church I have been at for 14 years. The person whose house it was I have knows this entire time. I wasn't sure who she was or what her name was when I got there. I looked arround the room hoping I would figure it out and although I did pick out the right woman I wasn't 100% certain I had and couldn't recal her name to save my life. Oh and my hair is falling out steadily and has been since shortly after my 2 year old was born. Increasing my thyroid meds has led to greasy hair and not falling asleep while driving anymore but hasn't slowed down my hair loss.

My Dr seems to think I'm a hypochondriac and was very dismissive of me when I went in with my Bells Palsy. Thankfully the naturopath in his office seems to get it and is being very supportive. Unfortunatly she knows nothing about Lyme either.

I have done SCD (2006) and now am following GAPS for the past 8 mos. My symptoms got much, much worse in Feb of this year. It took me a while to figure out it wasn't just a couple of bad days. A few things have had me concerned for a while though. I thought I looked terrible before starting GAPS although I had lost a lot of weight I needed to lose on a strict elimination diet for my nursling toddler. Starting GAPS made me stop losing weight and look healthier but after a couple of months suddenly my health crashed and here I am.

I just last Monday thought to go to this acupuncture clinic in my neighborhood that treats really cheaply to get some symptom releif. It worked! Plus they know of another acupuncturist who treats Lyme. I knew her as well and called her up the next day. She saw me yesterday and needled me and put me on some herbs. She says my liver/gall bladder is very stagnated and that although I do have classic Lyme symptoms I also could have a mold problem. I live in a 100 year old house in a very humid area of the country so that is certainly possible.

She will treat me the same either way. I made up some tea from the herbs she gave me and have started drinking it. I'm to get needled 1-2x weekly from that clinic in my neighborhood (much cheaper than her) and she will tell them how to do it.

I've got to go to bed now. I'll write about my kids tomorrow.
post #287 of 369

Now my girls

My older DD had issues from birth. Hard to define issues but she was miserable most days. From birth she had trouble falling asleep. She screamed in the car all the way home from the hospital and kept it up for the first couple of years of her life. She needed to nurse constantly round the clock. It was every 30-90 min till she was over 2. I was committed to giving her what she needed but I nearly lost my mind meeting that need. She had rashes a lot. She was "allergic" to dairy, eucalyptis oil, wheat, eggs, nightshades, apples I can't remember what all else. She would suddenly have her joints, esp knees, turn bright red. Often her cheeks were red at those times as well. She has high anxiety. Several DX's have been thrown out for her (she is now 6) ADHD, ODD, I just read a description of aspbergers and she fits that except that she is coordinated, usually. She has lots of sensory issues, primarially sensory seeking. Lousy fine motor control/strength. She still struggles with naming all her letters and numbers after years of working on them. She will have days when she is clearly just unable to focus despite her best effort. She has joint pains, two nights ago she woke up crying for an hour because her knees hurt so much. She has slept through the night a handful of times. Until recently she got melatonin nightly or it would takes hours for her to fall asleep. She will get insomnia seemingly randomly. Just wakes up and can't sleep. She wakes up grumpy virtually every morning. She complains that she doesn't feel good much of the time esp in the morning.

My younger DD slept really well and was a happy girl till she was 6 months old then overnight that all changed. She did have yeast issues from birth. I had two fillings replaced by a mercury free dentist who followed the protocol (there was decay and he had me worried about an abcess). Within 48 hours she was a different child. Reflux, tons of food sensitivities, poor sleep, grumpy, we eventually did a scope looking for eosinopilic esophogitis (clean). She has milder sensory issues than her sister and none of the social issues. Her skin is covered in a rash that used to respond to diflucan but now doesn't. She has colds/runny nose very often. Poor digestion. Low tone, she chokes on drink often, like she can't get it coordinated quite right. straws are hard for her to use. She will tell me that she hurts but it is hard to tell what is really going on since she is constantly immitating what she sees and hears arround her. It is to her advantage that she is energized by people and loves being arround them. I am like that too and will feel my best when at an event of some sort with lots of friends (I usually crash afterward but it is like a pain killer for me at the time.)

We all wake up grumpy and needy here. Not a good combo. All I want in the AM is to be left alone and all my girls want is to be coddled. Actually we would all probably like to just veg for the first hour but my toddler wants to veg in my lap nursing and after nursing her for much of the early morning I just don't want to any more. Plus once they are ready to go they need breakfast right away so at least I need to be doing that.

It is easier to convince me that my older DD has Lyme because of the cognitive symptoms but my younger dd has bad digestive symptoms so perhaps that is Lyme in her. I assume I had it before I gave birth to my older dd despite the only tick bites in memory being after she was born. I grew up in CT and could have been bitten at any time and not known it. I have had many symptoms for much of my life. My parents talk about what a happy outgoing baby I was but I remember clearly being afraid of relatives and not wanting to talk to them. I have struggled with ADHD symptoms for as long as I can remember.
post #288 of 369
Isn't there anyone on here with Lyme who wants to talk? I could use with some words of wisdom right now. I'm in a really hard spot and not really sure what to do next.
post #289 of 369
I'm happy to talk to you! I don't have lyme. However I work with it quite a bit and dh had an advanced case.
post #290 of 369
I'm trying to figure out if I need to do abx.
I have been really sick for 6 months. I can barely function (and I have two young children and no daytime help). Today was typical. I made it to lunch w/o collapsing but then napped most of the afternoon with my toddler. My 6 year old is on her own when I crash like that and usually doesn't get into trouble.
I started TCM on Sat and feel worse than ever but i'm not sure if this is to be expected or not. I have felt progressively worse these past 6 months with symptoms that go back years. I have a call in to the TCM practitioner but she didn't call me back.
I strongly suspect my Dr will put me on abx if I ask but since my nursing toddler is already covered in yeast I don't really want to do that. However I can't keep going like this.
I have been working with a homeopath but so far the remedies aren't addressing any of the lyme symptoms (other than the bells palsy). I have been on the GAPS diet for 8 months. Very low carb for a very long time because I do so poorly if I'm not low carb. I just don't know what else to do. Every time I think I have found something that helps it only helps the first time and then makes no difference. My first acupuncture appointment was amazing, I felt really good for 2 days. The next 2 have done nothing for me.
post #291 of 369
Well, I have been fortunate enough to be fairly successful with lyme. I work with it a lot and I rarely have cases where things don't get worse for 1-3 weeks before they get better. I would say that's likely normal for MOST modalities. I hope you get to talk to your practitioner though so she can clear that up for you.

In terms of homeopathy there are multiple different approaches. I had to try quite a few before I found my groove. Initially I was taking a very clinical approach (working with the disease picture, working to stabilize the response, working to address current symptoms etc.) and while that worked for some people I wasn't seeing a big enough change for the majority of them. Now I do things quite differently.

I also use a range of supportive things-herbs, flower essences, biochemics etc. along with nutrition and targeted supplementation where needed. I really feel that to address this alternatively you need to have support from every angle. This is not an easy path to walk, so it's important to get all the help you can.

I can answer whether or not you should do antibiotics. I can tell you that almost all the people I see did, but are still having symptoms. That's just the way it is. Of course that's skewed, because the people who did the abx and had them work aren't looking for treatment.

It's a very personal choice. Do you have specific questions about anything?
post #292 of 369
It is good to know that people tend to get worse before they get better. I suspected that but hadn't discussed it with my TCM Dr.
I'm just desperate for something that will help me feel better even a little bit. I have been watcing my kids lives slip by and it beaks my heart to be so useless. My dd is wearing a long sleeved dress today because I can't do the laundry anymore and my dh is too over worked to keep up. And my brain doesn't work anymore. That is so maddening! I can't remember anything, I can't process information that I take in. My attention span is that of a gnat. I can't participate in conversations anymore. I can barely move. I'm so exhausted but sleep doesnt help. I cry at the drop of a hat. It is like being pg (i'm not)
post #293 of 369
so, are you doing herbs from the TCM practitioner and homeopathics? How many? How often?

Your diet looks great....lyme loves refined junk and starches.

Are you moving at all? Do you know if you have metal issues?

What are your vitamin D levels like? Neurotransmitters? White cell activity?

Are you supplementing to keep your calcium, magnesium, B vites etc up?
post #294 of 369
Quote:
Originally Posted by Panserbjørne View Post
so, are you doing herbs from the TCM practitioner and homeopathics? How many? How often?

Herbs from the TCM. Tea 3x daily from a mix she put together for me. My last dose of the homeopathic was 2 weeks ago I think. We thought it was causing an agrivation so backed off waiting on it to work.

Your diet looks great....lyme loves refined junk and starches.

Are you moving at all? Do you know if you have metal issues?

Not sure what you mean by moving at all. I don't exercise, I feel much worse if I do. I do as little as possible so that I can do what is necessary. Bringing a basket of clean clothes up one flight of stairs usually requires 10 min of recovery afterward.

I assume metals are part of the problem. I have amalgams. I have had a hair test that didn't look nearly as bad as my dd's test. (her only possible source is me or diet)


What are your vitamin D levels like? Neurotransmitters? White cell activity?

My D 25 is good (I take 4000 iu daily though cause it was low) Neurotransmitters had problems. I take 5-htp and taurine per my Dr's recomendation. Haven't noticed any improvement from those. Nothing remarkable on my CBC.

Are you supplementing to keep your calcium, magnesium, B vites etc up?
I have been experiementing with taking just mag no cal and have fewer leg cramps but now my teeth hurt. I'm trying to increase my yogurt and bone broth to see if that helps. I know drinking lots of raw milk would work for me but hesitate because it isn't allowed on GAPS. I'm extremely sensitive to corn so I go back and forth on taking b-vites. I was taking raw liver for a while but when it stopped making me feel better I stopped taking it.
post #295 of 369
Just offering a big hug to you, Patty! My infant son and I have lyme and weare working through it. I know just what you are talking baout, as some days are hard and I am shocked that I even make it without falling appart. Life does get better. We have gone through treatment and it really does work. My eyesight has taken a while to rebuild though.
post #296 of 369
I see an osteopath, so he does both antibiotics and natural stuff. I had an increase in pain and heartburn and some other odd symptoms (for me) when I started the treatment. I think I'm on my 3rd month of antibiotics (I take 2: minocycyline and bactrim). So I just had a biopsy and then lumpectomy and I had to go off all the natural stuff because I wasn't allowed on any anti-inflammatories or any plant estrogens or blood thinners and all the stuff I was on was on one list or another, and I stopped the teasel just to be on the safe side. So while I was JUST on the abx and nothing else, I had barely any symptoms (except that I got a UTI because I had to go off the anti-inflammatories, so I was on a 3rd abx for most of that time). But painwise, I had nothing. So on Monday I was allowed to start back on everything. So I restarted the Resveratrol, Cat's Claw, and teasel, and HOLY COW. Everything aches. My thumb arthritis is back. My back hurts all the time. The heartburn is back. Etc. So now I'm wondering if the abx are really doing any good or not. So I'm just telling you my experience so far, with the combination of things.

I still haven't heard whether DD2 has it or not. I have to call the doctor one of these days.
post #297 of 369
Quote:
Originally Posted by bluebirdmama1 View Post
Just offering a big hug to you, Patty! My infant son and I have lyme and weare working through it. I know just what you are talking baout, as some days are hard and I am shocked that I even make it without falling appart. Life does get better. We have gone through treatment and it really does work. My eyesight has taken a while to rebuild though.
that was the last big thing for dh too. He never had vision problems before lyme and had to get crazy strong glasses. However he's been able to ditch them. It took a while, but he's not been wearing them for about 9 months now and functioning fine!

Before he couldn't read signs, labels etc. It does happen!
post #298 of 369
Anyone know about rife machines? Pros and cons (outside of cost)? Can they be used on kids?
post #299 of 369

lyme and iodine

Hello Mommas, Just found this thread, was dx with lyme by my chiro two months ago, along with my eight year old son. My chiro treated us both with laser and a NAET kit. He works with frequencies. I am on the mend but I am going to go to another chiro who has vials from Klinghardt and will get tested by him. I don't trust lyme. My first chiro thinks he cures it but I'm not sure about that. I take iodine, started five months ago, and will continue because it makes the difference between a day of sitting around and a day of getting things done. I am shocked that iodine isn't given more attention for treating lyme. Even the iodine forum doesn't talk about it. It is good for momma's milk too. Did you know that nursing depletes one of iodine?

Many people are scared of it, say it will give you goiters but lack of iodine gives one goiters. The blood passes through the thyroid every 17 minutes for cleansing, if there is no iodine, then the blood isn't cleansed.
www.naturalthyroidchoices.com
www.iodine4health.com
www.jcrows.com
I'm in the Pacific Northwest if anyone wants to know the name of my chiro. joanlulich@yahoo.com
Cheers,Joan
post #300 of 369
I've been reading about iodine's role in breast cancer risk as well. How much do you take for the lyme? If I could kill two birds with one stone, so to speak, that would be great!
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