posted
I'm new here and hope that you can help me!
I am currently undergoing testing for MS and part of that testing includes ruling out Lyme Disease. This has got me thinking.......
Twenty-two years ago I contracted Lyme Disease. I was never officially diagnosed but was told it was a very high probabilty. My initial doctor did nothing. Two years later I was taken to another doctor who gave me some sort of injection as the disease was still taking its toll on my immune system. The injections were stopped after 2 weeks due to the growing fear of HIV (the injections were made from blood and this was the mid-80s). I was never treated further for this issue and it wasn't until roughly 10 years after I contracted Lyme Disease that I became "normal." (By normal I mean having a strong immune system and growing physically.)
About 5 years ago I started having symptoms of a neurological disorder but didn't bring it up to anyone because the issues weren't significant enough to really deal with. In the past several months those neurological issues have intensified and in the past 2 weeks they've become almost severe. This prompted a visit to the neurologist and the testing for the possibility of MS.
It never occured to me that these symptoms I have been experiencing could have anything to do with Lyme Disease as it has been so long since I contracted it. I know it remains in your body if it is not treated, but I went so many years without any sort of problem. I started reading about MS and everything came back to Lyme Disease.
My question is, is it possible that these significant neurological problems are a result of the untreated Lyme Disease I contracted 22 years ago? I didn't bring this up with my doctor because I didn't connect the dots until later. I am starting to do my homework so I can discuss it with him at my next appointment. I have found a great deal of information on Chronic Lyme Disease but I haven't been able to find anything on the possiblity of neurological symptoms beginning (or significaly manifesting themselves) 20 years later with extremely limited symptoms up until then. Any advice, experiences, wisdom, and suggestions would be greatly appreciated! Thank you very much in advance!
Posts: 11 | From MO | Registered: Jul 2006
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posted
One more question, I've been reading through the posts and something has me a bit terrified. I am currently breastfeeding my child. If I did in fact have Lyme Disease (we are pretty certain of that) and it is currently active in my body, I could transmit it to my son via breastmilk, correct? Do the strong antibodies in breastmilk not kill the bacteria? Does anyone have anything that addresses this concern?
The more I read on this the more terrified I become. I am currently in the process of trying to have another child and I'm devastated to know that I have to put that on hold or maybe never persue it again.
Posts: 11 | From MO | Registered: Jul 2006
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I'm not a doctor, but I can say from my reading/researching that YES, this could all be lyme disease.
I've had lyme for at least 18 years (very probably longer-- fairly certain I've had it since birth), and have had almost every neuro symptom you can imagine! I had a tentative MS dx, too -- scary, isn't it???
There IS some pretty convincing evidence that Lyme can be passed in utero to the foetus, and/or passed in the breast milk.
My advice would be to get to an LLMD (lyme literate medical doctor) as soon as you can, and start treatment. As for your baby -- if I were in your shoes, I'd stop breastfeeding, and have the child tested for Lyme.
As for having another child -- this is really something to talk over with an LLMD -- opinions differ on this -- some say it is fine as long as you are on abx the whole pregnancy, others disagree.
There is some evidence that lyme during pregnancy can be linked not only to congenital lyme disease, but also to autism, birth defects, etc. Please find an LLMD! You can post for referrals in the "seeking a doctor" section.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Thanks for the info. After much thought, I think I'll continue to breastfeed because if I do have Lyme Disease my son is probably already exposed to it and breastmilk is the best thing for him in this situation. I would be passing on antibodies that my body has already created. Besides, there are significant detrimental effects to abrupt weaning that have actually been documented. When weighing the evidence, I think breastfeeding wins out.
I am definetely going to look into a doctor that has knowledge of Lyme Disease. Is there a chance that there is a treatment after all of this time? I understand that Chronic Lyme Disease is Lyme Disease that doesn't respond to treatment. Since I've never had treatment before, is it possible that I could undergo treatment and rid my body of Lyme Disease, or at least the symptoms?
Posts: 11 | From MO | Registered: Jul 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I had lyme with the tick attached and the bullseye rash and my blood work positive in 1991. Iwas only treated for 2 weeks of tetracycline. I got completely better and had NO symptoms of Lyme disease whatsoever for 10 years. Then I was either reinfected or relapsed and things poured back in. Much more neurologically involved than the first round. Inever saw a tick or had a rash the second time around. I just suddenly started have bizarre symptoms.
Yes, lyme can go dormant and not show up for years and years. It can go into a cystic form and hide from your body. It then can change back into spirochetal form and wreak havoc.
Your doctor will most likely poo poo the idea of lyme disease being the cause of your symptoms as there is MUCh animosity and debate in the medical world about lyme and what it can cause. I suggest as others have to find a really good lyme literate doctor by posting on the SEEKING A DOCTOR section of these discussion boards. It might take months to see the doctor and they are often out of network as the insurance has cut most funding of treatment of lyme. It is important to rule out all causes INCLUDING lyme though and lyme can really only be ruled out by someone who is very familiar with the disease.
As far breast feeding I do not know. But you could post another Q with that headline. There are MANY others here who have been in your situation.
good luck, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
I just sent you a PM, private message, with a bunch of info and about how to do a search on MS & LYME, plus breastfeeding, and a MO LLMD.
Tutu, please send her your LLMD web site info; I couldn't remember the exact web site name...lyme brain fog. thanks!
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
There's a lot of info in there about later manifestations of Lyme as well as neurological symptoms.
Try not to get discouraged, though. I went 14 years before getting treatment and still benefited quite a bit from it. Others here have gone many more years than that.
posted
At the April Conference, Dr. B said that he sees the worst of the worst with chronic lyme. It takes an average of three years to become "symptom free" using all the best med combos, testing and coinfection treatments.
He puts pregnant women on amoxicillin during the entire pregnancy (I forgot what he said about breast feeding but I think it is a no go)
(If you have the resources and willingness, you may want to consider traveling to him for diagnosis and treatment)
Lyme is very tricky..that's why it is called a "stealth pathogen" and you don't want to settle for less than an extensive diagnostic work up by a lyme literate doc before accepting an MS diagnosis.
Glad you found lymenet...you are a million steps ahead of many others.
Best.
-------------------- We are spiritual beings on a human journey...
posted
I don't know if you're familiar with the symptoms of lyme disease, but I wanted to make sure they were impressed upon you now and not later.
I understand this is hard to deal with, we've all been there....but we are concerned not only with you, but with your family. Please come back, so we can help.
Denise Lang's List of Symptoms (Dr. Burrascano's original list with the format and additions of Kathy Cavert) Symptoms of Lyme Disease
* The Tick Bite
1. Tick bite (deer, dog or other tick) 2. Rash at site of bite 3. Rashes on other parts of your body 4. Rash basically circular and spreading out 5. Raised rash, disappearing and recurring
* Head, Face, Neck
6. Unexplained hair loss 7. Headache, mild or severe 8. Twitching of facial or other muscles 9. Facial paralysis (Bell's Palsy) 10. Tingling of nose, cheek or face 11. Stiff or painful neck 12. Jaw pain or stiffness 13. Sore throat
* Eyes/Vision
14. Double or blurry vision 15. Increased floating spots 16. Pain in eyes, or swelling around eyes 17. Oversensitivity to light 18. Flashing lights
* Ears/Hearing
19. Decreased hearing in one or both ears 20. Buzzing in ears 21. Pain in ears 22. Ringing in one or both ears
27. Joint pain or swelling 28. Stiffness of joints, back, neck 29. Muscle pain or cramps
* Respiratory and Circulatory Systems
30. Shortness of breath, cough 31. Chest pain or rib soreness 32. Night sweats or unexplained chills 33. Heart palpitations or extra beats 34. Heart blockage
* Neurologic System
35. Tremors or unexplained shaking 36. Burning or stabbing sensations in the body 37. Weakness or partial paralysis 38. Pressure in the head 39. Numbness in body, tingling, pinpricks 40. Poor balance, dizziness, difficulty walking 41. Increased motion sickness 42. Lightheadedness, wooziness
* Psychological well-being
43. Mood swings, irritability 44. Unusual depression 45. Disorientation (getting or feeling lost) 46. Feeling as if you are losing your mind 47. Overemotional reactions, crying easily 48. Too much sleep, or insomnia 49. Difficulty falling or staying asleep
* Mental Capability
50. Memory loss (short or long term) 51. Confusion, difficulty in thinking 52. Difficulty with concentration or reading 53. Going to the wrong place 54. Speech difficulty (slurred or slow) 55. Stammering speech 56. Forgetting how to perform simple tasks
* Reproduction and Sexuality
57. Loss of sex drive 58. Sexual dysfuntion females only: 59. Unexplained menstrual pain, irregularity 60. Unexplained breast pain, discharge Males only: 61. Testicular or pelvic pain
* General Well-being
62. Unexplained weight gain, loss 63. Extreme fatigue 64. Swollen glands 65. Unexplained fevers (high or low grade) 66. Continual infections (sinus, kidney, eye, etc.) 67. Symtpoms seem to change, come and go 68. Pain migrates (moves) to different body parts 69. Early on, experienced a "flu-like" illness, after which you have not since felt well.
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