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Mommas with Lyme Disease <3 - Page 9

post #161 of 369
Aileen,

Considering how TERRIBLE Lyme is, I'd go with the formula for now. Temporarily living on formula is way better than having Lyme. Undoubtedly, Lyme is worse.

Meanwhile, keep pumping (and freeze it if you want). That'll keep your supply up so this can truly be a temporary thing. And if the tick is Lyme-less, then you'll have perfectly good milk frozen in case you need it.

Meanwhile, my best wishes that you stay healthy!

Holly

Oh, I just realized you mentioned the tick was attached less than 24 hours. That wouldn't make any difference. It just needs a moment.
post #162 of 369
I was diagnosed with lyme one week after showing syptoms (high fever of 105 for 5 days, headache etc.) then the rash appeared and was immediately put on Amoxcil so I could continue breastfeeding. (I'm on day 3 of treatment) 2 ER docs, my doc, my midwife, and my pedi never said anything about stopping breastfeeidng

should i be worried that my 3 mo old may have been infected by me?
post #163 of 369
Quote:
Originally Posted by rowansmomCT View Post
I was diagnosed with lyme one week after showing syptoms (high fever of 105 for 5 days, headache etc.) then the rash appeared and was immediately put on Amoxcil so I could continue breastfeeding. (I'm on day 3 of treatment) 2 ER docs, my doc, my midwife, and my pedi never said anything about stopping breastfeeidng

should i be worried that my 3 mo old may have been infected by me?
I also want to know about this.

I will say that my 18 month old is starting to show a few symptoms, but they may not be Lyme. I was just dxd yesterday. My nursling has changed his sleep pattern dramatically, is fussier in general, has a generalized rash that comes and goes and fever that is intermittent. Also, he complains of GI distress by clutching his belly and saying "poo poo, poo poo".

I am taking Doxycycline, and homeopathic ledum (which my baby gets through my milk).

I found this link at kellymom:http://www.kellymom.com/health/illne...e-disease.html
post #164 of 369
my pedi talked to an INfectious Disease specialist and they both said that if by some remote chance my DD got Lyme through my milk then I should continue nursing since I"m on Amoxcil and she'll get that through my milk too.
BUt he said there is a difference between acute Lyme (which I have) and Chronic LYme i guess acute lyme is easier to kill because it's in the beginning stages.
post #165 of 369
adding to this list

I was dx last week after 3 big bulls eye rash areas -no other symptoms really--maybe increase in stiff finger joints in the am mostly.
Was told to take amoxicillin 500 mg 3 x/day for 2 weeks
Test came back positive for lyme and positive for rocky mountain spotted fever!!!

My nurse prac told me to stop the amox. and stop breastfeeding my 19 month old and take doxycycline for 3 weeks---NO WAY--so i read online and found 2 sources that said ok to nurse and take it if less than 3 weeks -small chance of tooth discoloration.

Dr called back himself and I told him what I read and he looked at lab tests and said ok to not take any more amox and we will check titers next week and see if they go up or not-then we will know if it is old rockymsf or not and if Im not showing signs then no need for any doxy.

Hope I can learn /contribute.
post #166 of 369
I've been on doxycycline for a week now. I decided to wean my 3 year old because, well, he's 3 and I read that the doxy adversely affects nurslings by stunting bone growth and discoloration of permanent teeth. I feel like crapola. My 3 year old nursling is also being treated for Lyme with ammoxocillin .
post #167 of 369
well -my antibody tests were redone --my antibody level s did not go up ---so I am not taking any meds .
I have been reading online --scary stuff!!
Any herbal remedies to help???
I a
have been taking vit c,echinacea,goldenseal,red clover,astragulus,grape seed extract-lots of herbal teas -Mothers milk and some valarian at night.Cod liver oil at times -trying to eat better also.
Any good links ?
post #168 of 369
I'm using an essential oil by Young Living called ImmuPower--it's a mix of several oils. Right now it is the only thing that works on Lyme, but it is working really well. Unfortunately, it's only available thru distributors, so you have to order it.

Colloidal silver and Cumanda are both supposed to be really good, BUT neither tests very well on me right now.

Hope you find something that works. God Bless!
post #169 of 369
I haven't read all the posts...
but I've used the Stephen Buhner herbs and feel great.
The herbs:
japanese knotweed, astragalus, andrographis and just lately stephania.
My only symptoms are eye floaters and maybe a tad bit of creakyness in the neck.
In two months I expect all symptoms to be gone - but I'll probably keep taking high doses of the herbs for awhile. I'm sick and tired of thinking the lyme is all gone, relaxing the dosage and bango, having the lyme come back.

When I caught lyme disease, my breastfed son was 2 (i was planning to stop at 2 and a half,) but I continued breast feeding him until he was 3 just to make sure he was well covered by the herbs I took. He has never, ever had any symptoms of lyme, beyond the slight popping in the wrist joints - which isn't an issue anymore.

I've never taken any anti-biotics because I didn't want the long term side effects for me or my child.

Detoxing is a very important part of removing the lyme bacteria. I do like Dr. Schulze's detox tea.
post #170 of 369
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post #171 of 369

Lyme Briefing at Congress on Sept. 24

Hi Moms, I too have Lyme (well I'm actually in remission bc any true "lyme doctor' will tell you that it never goes away..........)

If you are having symptoms of night sweats, headaches and chest pains, those might also be signs of babesia...another infection from a tick bite......done with a simple blood test......(I had that too)

I won't go into my long story of how long it took me to find my specialist, but I had to stop all antiobiotics and start with my homeopath........SUCCESS AT LAST

Labcorp is the only lab that will do a test called CD57......it give you a range of antiobioties and depending on the number, you can tell if you have active Lyme, or if you never had it or if you are on the mend........

Two great websites
www.underourskin.com
(the new Lyme Documentary that just came out)

www.natcaplyme.org
(if you live near Washington DC, a free showing of the movie is coming out)

also, check out the website for info on how to help reach members of congress for the big Lyme Briefing on September 24
post #172 of 369

Lyme Disease and Breast Feeding

Hi Moms, and I hope this doesn't upset anyone......but if you have Lyme, you can't breast feed.........it's passed thru mommy milk and thru the placenta as well.......

if anyone was pregant with Lyme, baby needs to be tested ASAP......
the Igenex (sp) lab in Paolo Alto will do a specialized urine test for babies

Good Luck
post #173 of 369

Help for Lyme (California, Virginia, DC)

HI Moms, if you have Lyme and live near Escondido California and are into homeopathy, then try Bill (William) Mann...........after 4 Mds. I am working with my current Lyme Specialist adn Bill (had to stop all meds cold turkey bc of severe allergic rxns)--and he's able to do my consults over the phone (but that might not work for others) and have been in "remission" for about 6 months......without drugs............my md has been testing my blood for stuff and nubmers are good
(labcorp CD 57 test......they use it for hiv patients)

Three FYIs
If you live near Washington DC, check out www.natcaplyme.org for free tickets to the documentary "Under our Skin"

also check out the website www.underourskin.com

and if you live in Northern Virgina, the best Lyme Specialist is Dr. Samuel Shor in Reston (teh waiting list is forever but he's THE BEST)......dabbles in some homeopathy and herbal

or if you want an MD/homeopath, try Dr. Sandra Chase----(don't know her experience with Lyme, but true homeopathy is different)..shes' in fairfax

Good Luck
Carol
post #174 of 369

2 sons w/congenital neurolyme

Breastfeed knowing you have lyme already? WHY would you even think about it?

I've lived through the lyme nightmare being undiagnosed for 35 years and passing it on to my two sons. My oldest was diagnosed with everything from Asperger's, PDD-NOS; severe ADHD; tried to slap bi-polar and others on him, had a behavior therapist, mobile therapist, TSS in the home 52 hours per week for 3 years? The younger son was progressively ill from the get go but really slammed in third grade with each year afterward missing 50-60 days of school and the school district trying to charge US with a $5,000 truancy bill because 'WE DO NOT RECOGNIZE CHRONIC LYME" Idiots they are.
Long story short, Lyme is NOT just from deer ticks, it is from mosquitos, lice, mites, gnats, greenheaded flies, through breaskmilk, SEX (no different than AIDS) and the placenta. If you wish to reinfect your child through breastmilk then go ahead and chance is my thought on it. Do I wish anyone to live my nightmare and be told your child has no hope in this life to be pushing a buggy at the local Superfresh? NO which is why I'm posting here.
A child does not test with a 170 IQ and then go down to 116 with any form of autism! Lyme mimics 350 different diseases and is in every state in the country. There isn't one GP in the tri-state area who has taken the time to learn about lyme unless he/she or a family member is dealing with it themselves and has had no choice. One hand doesn't know what the other hand is doing around here. Everyone uses Quest labs rather than making a clinical diagnoses. Quest is only 8% accurate-----not 80, 8!!!!
Insurance companies do not want doctors diagnosing people with lyme because they don't wish to pay for it, that is the bottom line. It is complicated so the doctors have no time to learn and then individualize treatment properly for their patients. Instead they give 10 days of doxy and "wow, you're cured". Then when the bugs head to the central nervous system to hide out and get away from the abx and return with avengence you know what you will hear from your gp? "Well, you must have been bitten again, let's try 10 days of doxy" Then----knees hurt, must be arthritis, head to the rhematology dept.; no energy, sleeping all the time? Must be ----a made up disease of which 99.9% who are told they have fibromyalgia really have lyme one in the same damned thing.. Think there isn't a lyme-autism connection? There must be, no question or doubt in my mind. All these parents who trust their M.D because of that title at the end of their names are being duped into believing Johnny or Suzie has a mental problem, behavior problem or are slow; they have an unexplained infection that continues to return so let's throw them on Ritalin or Adderall, it doesn't hurt developing major organs now don't you worry! OPEN your mouths and question every damned thing! There is an underlying reason Johnny or Suzie doesn't feel well, is acting out and can't help themselves. Add to it all the crap parents feed their children out of convenience rather than what their little bodies need nutrition-wise to grow and flourish!!! Toxins, chemicals, loaded with sugar? My older is son has been off ALL meds for all diagnoses.
Both had SPECT brain scans and showed neurolyme---hence the reason for the older son's behavior which after beginning treatment for lyme we have not seen one hint of the behavior for which my husband was ready to park the kid in a Deveroux facility full time? Educate yourselves, advocate for you and your children and never, ever mess with that God-given instinct you were given, please???? My older son has neurological damage that might be irreversible. Where I was told he would never drive, and work at the Superfresh? He owns 3 cars, pays full boat and has two companies since he was 16!!!! Both boys are still being treated by one of the best lyme docs in the country! Wheelerdealer
post #175 of 369

Lyme Mommies

Hi Mommies, just realized that there are a zillion pages to read thru but just in case it isn't mentioned.....

I keep seeing that everyone is being tested for LYME, but no one is mentioning any of the coinfections you can also get from the tick bite....I also had babesia, but was tested for spotted rocky mountain fever as well......

I had no relief from antiobiotics (4-6 months) but have made a 90% recovery with the help of my homeopath ..........but my case wasn't the simple one ....there might be a few people that get better with a month of drugs, but many others like myself will always 'have it'......

anyone see that movie "UNDER OUR SKIN"?
I think the link is www.underourskin.org (or com).......trying to get our local library to buy it ......
post #176 of 369
I am going to join the tribe because we just found out we have chronic lyme and began the Igenex testing which so far the first test is positive for lyme. My recovered son and I are going to the Autism-Lyme connection conference in Scottsdale, AZ this week. Is anyone else from this tribe going? If so, look us up, I will have a nametag on:

Shelly
post #177 of 369
subbing
post #178 of 369
I haven't been on here much lately. Bestbirths--can you share a bit of what you learned at the Autism-Lyme conference?? I'm very interested.
post #179 of 369
It will take me a year to process everything I learned.
The first thing was how the MCS, Lyme and Autism communities were converging. There was a great intersection of ideas.

one website to help people process the information is thriiive.com it has how to videos for many things.

Moxxor looked interesting, except it is a MLM.

The concept of biofilm was huge. Lyme hides under biofilm. Nattok and lumbrokinaise or a combo of acv to break down biofilm. There was an amazing video done by the doctor who talked about it, Dr. Usman I believe.

Vitamin D, I am going to order 50,000 IU dosages from biotech

cold lasers, scar treatments, plant stem cells, plankton from the ocean, energy medicine such as orgone and discs, positive thinking, theives oil which I later learned to make myself, zinc loading and KPU, Dr. Klinghardts Lyme protocol, Dr. Cowdens lyme protocol, non gmo foods. There is just so much there...
post #180 of 369
Subbing.

I have Lyme disease, as does three of my five children. I suppose the others ones could, too. Got it this summer, after we moved to our new house. I'm wondering if we should keep living here...we were pulling up to 5 ticks off us daily, for a while.

We did the regular course of abx, but I'm just not feeling like that is enough. I am looking for alternative treatments - teasel, in particular - and for a way to help release the toxins.

I have headaches, pee all the time, muscle aches, joint aches, so so tired, heart palpatations, and my finger joint is inflamed. I just found another inflamation near my hip bone.

I feel so bad for my kids, they are so young with so much time for these stupid spyrochetes to invade their little bodies.

Glad to find this tribe...
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