New to Lyme - Breast Worries

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justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/4/2012 5:20 PM (GMT -6)   
Hi all -
I have recently been diagnosed with chronic Lyme from a tick bite over 20 years ago. In the mean time, I had to drop out of college 6 years after the original bite, and after 1 year was diagnosed with fibromyalgia. For the past 15 years I have gone about my life with the tag of fibro, but not feeling like it really fit. After multiple health concerns and pregnancy issues, I found myself with my 2nd miscarriage in a row (after a previous stillbirth and one healthy, happy child) and a whole new set of problems popping up. I was 34 (going to be 35 in a few weeks) and feeling horrible with new symptoms like painful breast lumps and horrible cycles, body hair all over falling out in clumps, dry burning eyes, aching bones, muscle pains, pelvic and bladder issues that landed me in more doctors offices then I'd like to admit. I got a mamogram and ultrasound and the doctor said they found nothing. My breast tissue is fatty and there were no fibroids or any other issues. The lumps in my breast disappeared but other things popped up and finally after 3 months and multiple doctors in my area, I scheduled a visit with a doctor 10 hours away (near my family) and over Christmas I went back to see him. He ran every test under the moon and I ended up with tons of high IGG tests including most of the bacterias that seem to show up with lyme. He is of the belief that lyme can lie dormant and that the 45 lbs of weight I lost due to an anti-candida diet and stress, and the stress and changes from a recent pregnancy and loss, and the fact that I did have a history of a bad tick bite in a lyme infested area a long time before plus all of my symptoms, that I had a nasty case of chronic lyme. My doctor here does not buy the diagnosis but that's another topic for another time. So right now I sit between two different medical opinions and uncertainty of what is really going on. My distance doctor started me on a dose of antibiotics - minocyclin (sp?), antivirals and lots of other supplements like anti-yeast, magnesium, etc. I am feeling lousy and the breast lumps are back but in the other breast. Not sure what is going on but hoping to hear from some people who might be able to share some insight if they've had breast issues.
My breast lumps are 1.5" ovals that run usually on the outside edges of my breasts. They were primarily on the left breast until this month where they are on the right one. They do get worse around ovulation and then calm down until my cycle starts and then they get bad again and shrink down to almost nothing around 6 days out from my cycle start. Not sure what is going on. These lumps are long and skinny and movable and near the top of the breast tissue. They often run parallel to the floor and curve around the side of the breast. There are always more then one in the breast and they often hurt. It has been brought to my attention that breast pain can often be associated with Lyme. I am seeing my OB on Monday for a follow up appointment as she wanted me to wait 3 months from the initial Mammogram to make sure all is o.k. Things have been worse and have been better so trying to understand what is going on. I'm 34 (almost 35) and just don't know if this is something that happens with people with Lyme or if I need to look elsewhere. I was recently put on bio-identical progesterone because my progesterone was pretty low. The lumps got better after starting the progesterone but they are back to the old way that they've been for the past few months. I've only been dealing with this since the pregnancy loss (along with eye floaters, eyebrow, nose, head and other hair loss, and unbelievable aching and fatigue) and can't figure out if it's all related and if someone has also experienced this along with explanations as to what is going on and what to do if anything to help eliminate these issues. Could use some breast wisdom from all of you!

Thanks so much and sorry for the lengthy, repetitive post. Thank you for your wisdom and support. I've been reading what is out there already.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 2/4/2012 6:01 PM (GMT -6)   
Hi Justascarf!
I am so very sorry that you have a need to be here, but I am sure glad you found us! I'm sure you will find a whole lot of information here, but almost more importantly - lots of support!!

Did you mean that you have read through our "New to Lyme?...Start here!" thread? If not, I would highly encourage you to do so!! It's packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

You do have enough of the symptoms that I believe it's wise for you to be evaluated by a Tick-borne disease specialist. You do have the option of using abx (anitbiotics) alone to treat, abx and herbals (many have found this to be very helpful), or by 'natural' treatments alone or in combination with abx.

If you want to use abx in any combination or alone, here are some places to contact for a referral:
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:phassan@optonline.net

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You can also ask the members here for a referral, although you will need to enable your email in your profile to do that, as we don't allow members to post Dr's names or info. If you don't want to use the email address you have now, you can create a second one on your own, or you can go to the tab at the top of the page marked "email". That will take you to where you can create your own email just for use with Healing Well!

As far as the female issues go, I've had lumps in my breast, but not large ones and they have gone away with treatment. You are smart to have already had things checked out!

One thing I have noticed, although it's not with lumps in my breast, is that lots of things reoccur with Lyme and other tick-borne infections! I would think that I had something taken care of, and after a bit, the issue would just pop back up! I can tell you though that with treatment these things have come back less and less often and generally for a shorter time each time they showed up. These infections can sure make the body do some crazy things!!

I too had a couple of miscarriages, and mine were due to long-term chronic Lyme. I have had two beautiful kids (who are now adults and dealing with their own Lyme) since that time!! For more information on kids and Lyme, here is a great site to visit - just promise you'll come back! Giggle! www.drjoneskids.org

The doctor that you saw during Christmas sounds like a wonderful, knowledgeable doc!! What he told you was correct. All of those things create stress and Lyme and friends feed off of that stress in a way. Stress lowers our immune system response, so these little critters get to come out to play, reeking havoc in our bodies.

In the "New to Lyme?" thread, the second post down, and about 1/2 through that post, you will see instructions on how to detox. It's simple and relaxing for most. Although I do need to caution you to start off slowly and with only warm water (not hot or overly warm), as this has the potential to cause even more aches and pains. Also be careful to only stay in the warm bath for no more than 7 - 10 minutes for the first time, at least until you know how your body will respond.

The reason I am suggesting heavily that you detox in this way, is because it sounds like you are experiencing a Herxheimer reaction, or Herx as we call them here. This is just an overload of toxins in the body, and the body just can't deal with all of them, so we need to help our bodies to get rid of those toxins. Our skin is one of our largest detox pathways, so the dry skin brushing is pretty important as well. Drinking plenty of lemon water (eight 8 ounce glasses at least) will not only help you stay hydrated, but will help your body stay in a more alkaline state. Viruses and bacteria like an acidic state in our body, and they will try very hard to keep it that way!

This may be a whole lot of info at this time for you, so I'll stop here for now. We all chip in to help those asking questions, so others will be along shortly to add their ideas as well!

I would suggest that you keep your OB appt, just to be sure that things are all okay!

Welcome to our spot!!! Remember that you are no longer alone in this!!
smilewinkgrin
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/4/2012 6:49 PM (GMT -6)   
Thanks so much Travler for your help. I have read the new members section first and am on day two of detox baths. I'm hoping that the baths may help get toxins out of my body. Maybe that will help with the breast tissue too. In general I have a good diet and I only drink filtered water and unsweetened almond milk. I guess I'm just nervous about breast cancer. I was the first of my friends and family to loose a child to stillbirth. All of the tests in the world revealed nothing. I was the first of my friends to loose a pregnancy due to miscarriage (19 weeks). Still no explanation. And the recent loss has every specialist baffled after monitoring, a strong heartbeat and again no results from autopsies and tests from this 11 week loss. So I guess you could say I'm a pioneer amongst my friends and I'm hoping that this stops and I wont find that I have cancer. It's hard for me to accept that this is all Lyme but if I could have a face to all of my problems for the past 20+ years, I would be ecstatic.

Thanks so much for the support and the links. It turns out that we were reading a Lyme book last night and there is a big name doc down the road. Never would have thought it in my small town! I'll deffinately look up some of the other doc info you provided though. My treatment plan currently includes abx and herbal but it's hard to do from afar. A big thanks on the kids Lyme site. I am excited to have that resource to help my 3 year old.

A big thanks in general!

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 2/4/2012 7:13 PM (GMT -6)   
HI
i was diagnosed with lyme in 1996. I have lumps too , frankly mine are sore at times, a couple of days ago they esp one was inflamed.
 
i recently decided to order my med records (30 bucks) anyway on a lot of the appt sheets it was written patient c/o sore something or other breasts.  I had forgotten how much this occured.   I sorta took to goin w/o a bra when possible, camis with a soft cup feel a lot better than a bra.
 
I tried to miscarry.  Thank God I did not.  I was at 19 weeks when I hemoraged .   My body was a total brat it did not want to cooperate, but through almost total bed rest and early but not too early I had the daughter I had already become soooooo attatched to. 
 
I hope you see your Dr.  And you feel better soon.

Scarlet Grace
Regular Member


Date Joined Nov 2011
Total Posts : 110
   Posted 2/4/2012 8:37 PM (GMT -6)   
Justascarf-

I'm sorry for your losses. 19 weeks is pretty late, and a stillbirth too… I'm so sorry.

Have you had your hormones tested since giving birth last time? I have always had my hair fall out greatly about 3 or 4 months after giving birth.

A friend of mine, who also has Lyme, mentioned having lumps in her breasts. She had a mammogram that came out just fine. She is only in her early 30's.

How long have you been on the antibiotics? Have you had any weird symptoms or increased symptoms since starting them?

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 2/4/2012 11:00 PM (GMT -6)   
I'm so sorry to hear about everything you've been going through!

Sadly it's pretty common for people with Lyme to be diagnosed with fibromyalgia, despite extraneous symptoms that don't fit the description at all. It definitely sounds like you're on the right track with looking into Lyme.

I've had a ton of breast pain - which definitely progressed as the Lyme did, though I can't say for sure if they're correlated. Doctors have told me that I just have extremely thick breast tissue, and cystic breasts - which isn't as bad as it sounds! I actually had a surgeon get STUCK while doing a biopsy because the tissue was so hard - and also very tender! Caffeine supposedly contributes to this - do you drink a lot of coffee? Maybe cutting down would help. As I'm not a doctor I can't exactly diagnose you - but is it possible that the lumps are swollen lymph nodes? I'm pretty sure there are a lot of them in the breast area.

You're already doing everything you're supposed to do - you're paying attention to your body, and going to the doctor about your concerns. If it is Lyme that you're dealing with, you'll learn that it can cause so many varied symptoms - practically anything under the sun can be caused by Lyme. The bright side of that is that all the weird symptoms will go away with treatment.

Never apologize for a long post! That's what we're here for! I hope you find some answers soon.
Co-Moderator, Lyme Disease Forum

yogilymie
Regular Member


Date Joined Sep 2011
Total Posts : 89
   Posted 2/4/2012 11:02 PM (GMT -6)   
Hi justascarf, I discovered a tender, painful lump in my breast about a week ago. I got an exam right away and my gyno believes it's just a cyst but I am getting an ultrasound on Monday to be sure. (I'm in my late 20s and mammograms are not used at my age apparently).

I had a lump in the exact same place three years ago (before Lyme) and it turned out to be nothing. I think in my case, as with many people, the Lyme is just digging up old ailments.

Good luck!

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/5/2012 10:11 AM (GMT -6)   
Thanks all for your comforting advice. To borderlyme, I guess this could be swollen lymph nodes. That probably worries more then anything for fear of lymphatic cancer. My husband is about to bop me over the head because he is a science guy and has said that the first rule in science is when there is one answer for everything, the you have to start there. I know that Lyme can sit in your lymph nodes but I just wonder if my lymph node could get so big. They fit the description of cyst but I would have thought the ultrasound tech and mammogram doc would have told me that they saw cysts.

I was up all night racking my brain about this and worrying. Today I have lots of right arm pain and pain under my arm pit. Yesterday it was breast pain and some sharp burning. I keep on trying to read more to be armed with knowledge and have searched on here and found others with similar complaints. I guess I just need to accept that this could all be Lyme and see what the doc says tomorrow. Just hoping for good news for my birthday.

And the breast pain has progressed with treatment. It started after my 2nd pregnancy loss about 18 months ago. The docs told me that my pec muscles seemed tight and ropy and sent me to pt. it helped and the pain subsided but then in October it was back after the next pregnancy loss. My breasts were never lumpy before September.

As for hair falling out, it started before the pregnancy so it's not pregnancy related. My hormones were checked and my progesterone was a bit low. My thyroid was off too. I've been on synthroid for 15 years. My t4 was high normal but my free t3 was so low along with reverse t3. So I am now on t3 and hopefully as they build it up, it will fix that problem. And I don't do sugars or any caffein. I havent had chocolate in months but no coffee or caffinated drinks in 18 years.

Speaking of swollen lymph nodes, I just remember that after getting bit by a tick, the lymph node behind my ear got really swollen. The docs have been aware of this and did basically nothing (I was 12 at the time). That lymph node is not as swollen as it was but it is clearly much larger then the other ear. Could Lyme really be hanging out there for that long? I did read some recent researching rats about Lyme loving lymph nodes. Strange. I'm still trying to get my white about me and understand all of this.

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/5/2012 10:13 AM (GMT -6)   
And good luck yogilymie. I will be thinking of you this week. I'll update everyone because I always hate it when I'm reading posts and don't know what the outcome was! Fingers crossed its just Lyme.

BustaLymes
Regular Member


Date Joined Jan 2012
Total Posts : 49
   Posted 2/5/2012 2:06 PM (GMT -6)   
I'm so sorry!
I get lumps and my breasts get sore. I was told it is from my 'impaired' lymph system. Also, I had a mamogram and they found calcified cysts.

My 'bad' estrogen is high which causes inflammation. Progesterone is the anti-inflammatory hormone. Your estrogen may be too high or you may need more bio-identical progesterone (I think docs figure it out by ratio of estrogen to progesterone).

How are your adrenals? If your thyroid was not functioning well, most likely your adrenals aren't either since they go together. My thyroid tests always showed 'normal', but I knew they weren't. I came to find out that my receptors are blocked and even though tests showed normal, my thyroid was anything but normal! So, now I am on Cytomel T3. Is your thyroid med both T3 & T4?
I am also on a maintenance dose of hydrocortisone (cortisol) cause my body doesn't make any.

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/5/2012 4:44 PM (GMT -6)   
Hi Bustalymes-
Thanks for sharing. I've been told that I am estrogen dominant and that due to my lower then normal progesterone, that I needed to start that. My doc told me that your thyroid helps regulate all of this so if it is off, then until you get your thyroid functioning again, you can't expect your progesterone to work.
My adrenals appear to be within range but indicate that I have recently dealt with a stressful event. He's monitoring that. And the thyroid I was taking was T4 and now am on T3. They are gradually building up my T3 to hopes that they can force my body to start utilizing it properly. We'll see how that works. I guess I'm having a tough time dealing with the waiting period. If I were totally honest, whatever is going on, I've been dealing with for 20+ years without knowing what it was and I have tried everything. So I wish there was a quick fix, but I know there isn't! If there was, we wouldn't have all landed here. Thanks for sharing.

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/5/2012 4:44 PM (GMT -6)   
Hi Bustalymes-
Thanks for sharing. I've been told that I am estrogen dominant and that due to my lower then normal progesterone, that I needed to start that. My doc told me that your thyroid helps regulate all of this so if it is off, then until you get your thyroid functioning again, you can't expect your progesterone to work.
My adrenals appear to be within range but indicate that I have recently dealt with a stressful event. He's monitoring that. And the thyroid I was taking was T4 and now am on T3. They are gradually building up my T3 to hopes that they can force my body to start utilizing it properly. We'll see how that works. I guess I'm having a tough time dealing with the waiting period. If I were totally honest, whatever is going on, I've been dealing with for 20+ years without knowing what it was and I have tried everything. So I wish there was a quick fix, but I know there isn't! If there was, we wouldn't have all landed here. Thanks for sharing.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 2/5/2012 5:31 PM (GMT -6)   
Hi Justascarf!
I'm so sorry about just kind of dropping out of sight! I get busy with things - usually to do with tick-borne infections, or my own healing. Of course you have been getting some really good advice from the other members here!! Our members are so great about helping others, one of the things I love the most about this site!

I wanted to say a word or two about your Lymphs and your miscarriage. It seems that you have had the same experience as I have had with pregnancies - although I only had one at 18 or 19 weeks and one at around 8 or 9 weeks and it was an ectopic pregnancy to begin with. I was told that after two live births I only had a 40% chance of surviving the next pregnancy, so I just never tried again. The autopsy of the 18 week fetus was completely normal, as were all of my exams.

Although science has yet to determine whether or not the fetuses are actually infected with Lyme or not doesn't seem to be well understood, it does seems that when the mother has Lyme, miscarriages are not rare - from what I've read.

What I wanted to say about the lymph glands - yes! The spirochetes of Lyme disease can live for decades in the body without causing symptoms great enough to send people looking for answers! Many here on this forum have been infected for a number of years before some stressful event brought out a full blown infection. Lyme happens to love to hang out in the nerves, eyes, brain, joints, and of course the lymphs.

If you don't feel comfortable about calling this all Lyme Disease, then maybe it's not - Lyme Disease rarely travels alone!! There are some other tick-borne infections that are very common and a few that aren't so common. The most common are - Lyme - of course, and Bartonella, Babesia, Ehrlichia, Anaplasmosis, I believe. The ones that aren't quite as common are Rocky Mountain Spotted Fever, Tularemia, and Leptospirosis. I've probably missed a few in each list, but you get the picture.

Stress in one of our worst enemies! So you need to be careful about worrying and adding any stress to your life. Stress lowers the immune system so that the infections can come out to play - unfortunately their play ground is our bodies! You should learn all that you can about your infections though. The better you understand them, the more you will be able to assist in your healing. I didn't understand this phrase when I was a newbie here, but it all makes sense as you go along!

Be sure to keep up with the detox baths! They help most of us a lot. Don't forget to dry skin brush as well though! Once I started doing this regularly I have felt a difference! It seems to help our skin 'complete' the detox in a way.

Please do let us know how your appt goes when you are up to it!! We are like a family in a way here, and we love to know how things are going!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

yogilymie
Regular Member


Date Joined Sep 2011
Total Posts : 89
   Posted 2/6/2012 12:34 PM (GMT -6)   
Just thought I'd follow up... my ultrasound and mammogram revealed only a small cyst and dense tissue so I'm in the clear. What a nerve wracking process though! I feel for you justascarf. Good luck today and I hope you get some good news and peace of mind as well!

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/6/2012 7:05 PM (GMT -6)   
Hey all -
I thought I'd update everyone too. First of all yogilymie, so happy to hear that all went well. Last night I used some biofreeze on my arm and breast and the pain and lumps went down. So it appears that there is some swelling there. I have been avoiding anti-inflamatories but I may have to rethink that. According to my OB today, what I am feeling is some breast ridges (hence the long lumps) that are composed of fat that appears to be swelling/taking on more fluids at times and going down at others. She said it could be due to hormones or it could be due to Lyme. Mine isn't a cyst as it would have shown up on the ultrasound or mammogram. She did say that it's good that the lumps have been on both breasts at different times and that they do get bigger and smaller. I did ask about lymph nodes, just wondering, and she said that they tend to be harder in the breasts and more oval like a grape. I'm wondering what role Lyme has played in any of this breast pain and fluid absorption or if it's just all hormone related. I guess time will tell and hopefully I will be able to nip this in the bud at some point in the future. Just find it interesting that biofreeze helped a bunch. Anyone else have any success with it with their Lyme aches and pains and swelling? I go in for lymphatic drainage massage in a few weeks so hopefully that will help. And I continue the baths (though I'm still having herx reactions to them so hopefully that will subside over time). Thanks all for your support!

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 2/6/2012 7:29 PM (GMT -6)   
I'm glad you got some good news! Keep using that biofreeze if it's helping! I use icyhot once in a while - I think that's probably similar - and it helps a lot, mostly with knots in my neck and shoulders. There are a bunch of natural antiinflammatories out there too if you're interested - plus many foods have antiinflammatory properties.

I had a lymphatic drainage massage a month or so ago - it was wonderful! And really made me feel much better! I hope it does the same for you!
Co-Moderator, Lyme Disease Forum

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 2/7/2012 10:31 AM (GMT -6)   
Yogilymie,
I can't imagine going through all of that! Talk about stressful!!! I'm so happy to hear that things turned out to be okay!! Congrats!



Justascarf,
You should back down on the frequency that you take the detox baths or the length of time you spend in the bath. If your body is in pretty much of a constant state of herxing, it won't be able to heal well. Then you can slowly build back up to taking them more frequently. I go back and forth as to when I can use the full detox bath or if I can only use the foot soak, as it all depends on what's going on inside me.

As for a natural anti-inflammatory, turmeric has worked wonders for me. I started out using the powdered herb - but I wasn't getting much relief, then switched to using a tincture and have had great results!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 2/7/2012 11:54 PM (GMT -6)   
someone might have asked this??

Milk products make my breasts lymphy like.

and yest the estrogen dominance makes them swell and hurt.

I use minimal minimal dairy.

I even get nervous with yogurt but i do it in the morning with flax oil
to stay regular.

also Traveler is saying lyme never travels alone and that is for some reason NEWS to people. It is never just lyme. It is 4 to 8 other things depending on how long this has been going on. I think many people have been bitten way more than once and it all comes out in menopause and
the other time it shows up especially in girls is puberty.

a lot of girls get MONO around that time and I believe it is lyme infection
taking over because of the hormone sweep that goes on during puberty.

and then they go on another 20 years after that, have trouble giving birth and either before menopause or at an early menopause brought on by this already lyme party going on all these years and the stress on the body of having children, suddenly LYME shows up roaring again.

meanwhile, it really was going on all along and a really good chance the children they did have were if not born WITH lyme were born with developmental deficiencies because it effects brain development in the fetus. We notice it and don't notice it depending on the child and the level of ADD or OCD or other issues that we kind of accept as the norm for
our children these days especially when there are so many great medications to make us think it is remedied.

It is a circle that is spiraling out of control. More back tracking is needed to really open everyones eyes before we can really move ahead with
seriously taking this "lyme" issue seriously.

it is so hard to maintain a focus because of all the cloudy confusion around a disease that is never fully recognized in the first place.

I am voting for which ever presidential canidate that recognizes the seriousness of the lyme lie.

We are exposing everybody else. It time to expose lyme.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 2/12/2012 7:44 PM (GMT -6)   
Hey Bucci -
Good points. I too barely eat any dairy. Just kefir and some goats milk cheese from time to time. That was the suggestion of my docs but recently the cows milk over the holidays did a number. My issue is that i can remember, only 4-5 months ago, when none of these lumps were there, but exams and mamo and ultra sound says all is good.

As to your other points, i Had mono in high school and then multiple preg losses (never issues getting pregnant) with no answers. I will be 35 in a week and feel like I'm 65, but then my 85 year old neighbors growing up in Arkansas always told me that I had more aches and pains then they did.
I struggle to 100% believe I have Lyme because though my doc said I do, one also said that she ran the tests and I don't. Both are llmds and the one who said no is an llids NP. The doc who is currently treating me showed how I had tons of very high IGG co-infections. I was bitten by a tick in Arkansas 23 years ago (andtold that lyme didnt exist there) and have been in and out of docs offices since. I still have a swollen lymph node behind my ear that appeared a day after the tick bite and has never gone away. Every doc ive ever seen has known this. I've tested IGG positive in the past for Lyme but not recently but my current treating doc is treating me based on symptoms and the high IGG confections. The abx has created quite a negative Herx reaction so he feels validated and feels that 23 years of surviving in my body, the Lyme is hiding.
I read the symptoms list and in most cases, I can relate to about 95% of the symptoms. No heart issues and not as many of the mental issues though I grew up speaking one language and then reading and writing a second so I've always just attributed my stumbling due to my dual language processing. I often write things backwards, stumble for words or get tongue tied and with abx it got really bad. I am caught between 2 medical docs, one back home who is treating me and one who is certified and a np in my own current community who acknowledges that my cd-57 is very low and so is my magnesium but that in general she isn't buying it because they are IGG, not IGM infections and neg Lyme. She ignores the swollen lymph nodes, tmj, fibro diagnosis, carpal tunnel, headaches, muscle knots, low body temp, low blood pressure, hair falling out, dry eyes and testing over and over for sjourners with no positive test, etc.
I was never treated for any of this but without a positive Lyme test I guess I could not have Lyme. For me it's just discouraging that I can't get my two docs on the same page(regardless of which page it is). I also fear that after 23 years of not having answers, that if I put all of my eggs in one basket, I'll be disappointed down the road when I find out that it really wasn't Lyme or that what it is is really bad and has been neglected and allowed to get way worse. I do feel like I've found an answer, just don't have the full confidence because of the local doc. Whatever it is, I hope I get a conclusive answer after all of these years. And I hope that regardless of me, that all of the world would start acknowledging Lyme is a problem and stop ignoring people.

I'm not in denial, just don't know if I've medically 'earned' the right to be in this group yet. I guess I need some more docs to evaluate me. I've got a good one in late March so maybe by that point I will be on my way to something good and will have a landing diagnosis one way or another. I just want to know. In the mean time ill keep taking my abx, dealing with chills and body coldness, dealing with the worst muscle aches ever and lymph nodes and swelling that I've never seen and hopefully I'll find a way to get better. I really feel like the first time in a VERY long time, I'm on to something.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 2/13/2012 4:42 PM (GMT -6)   
OH Justascarf!! Please don't allow those inaccurate tests make you doubt a thing! With 95% of the symptoms, it's very unlikely that you don't have Lyme and any co-infections!! The testing that's being done is so very unreliable. only about 1/2 of those that have Lyme will test positive for it. I was on abx for a full year (back in 2007) before I got a positive Lyme WB, and it came back positive for RMSF as well, not once, but twice that year!

Even the CDC tells us that a diagnosis should be made clinically with the lab results only to back up the diagnosis, not to make the diagnosis. The blood tests only test for antibodies to the infections, so if your body is overwhelmed by the bacteria, it's not going to be making those antibodies.

Besides, no one here needs to "earn the right" to be here!!! nono This site is for those that suspect that they have Lyme and/or other tick-borne infections to come and to learn and share their experiences, and to get and give support!! Honest!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

justascarf
Regular Member


Date Joined Jan 2012
Total Posts : 35
   Posted 3/1/2012 2:07 PM (GMT -6)   
Just wanted to update everyone. I've been going through lymphatic drainage. I actually did a breast session to focus on draining the fluids from there and the therapist taught me to feel the direction of my fluid flow. I've been doing the lymphatic drainage techniques and they have helped a ton. As such, I have been able (for multiple days in a row) have no more lumps in my breasts though they come back on some days. When my arm is more swollen or my arm pit is more swollen then the breast lumps re-appear. But it's encouraging to know that this can all be due to swelling and detoxing. In my body, it appear that the fluids are building in pockets of fat (so on the inside of my knee, my stomach, my flabby arms, my breast tissue, etc.). Where there is fat, there are pockets of fluids. Now all I have to do is figure out how to get my swelling down.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 3/1/2012 4:13 PM (GMT -6)   
So glad to hear you're doing better - sounds like a bit of a relief!
Co-Moderator, Lyme Disease Forum

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 3/1/2012 4:45 PM (GMT -6)   
I'm so glad to hear that you have found something to bring you relief!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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