This interview was written and published by Shelley White, for San Antonio Lyme Disease Examiner
As a late stage Neurological Lyme Disease warrior, I am aware of the controversy concerning the disease and how little information on chronic or late stage Lyme is known to the public. Getting diagnosed for Lyme Disease can take years, due to the fact that Lyme mimics other diseases.
The number of debates surrounding Lyme is downright ridiculous. One is crucial to the health of children though, and that is the debate on whether or not you can pass Lyme disease to your child if you are infected while pregnant. People can waste time fighting about the subject all they want; because what it really comes down to is the words of the women who have actually been pregnant while having Lyme.
Today, Melinda Fulford from Texas is bravely speaking up about her personal experience on this topic by engaging in an interview with me. Melinda and her children have all been affected by Lyme, and she was infected with the disease before and during her pregnancies.
First of all Melinda, thank you for speaking up about Lyme, especially about such an important issue. What has your personal experience been like with being pregnant while having Lyme disease?
You are welcome Shelley, glad I could help. Well, I guess I don’t really know what it’s like being pregnant without Lyme. Of course I went through the same symptoms as women without Lyme have like nausea, swollen feet/ankles, cravings and all, but I gained 50lb’s with each child. I think being overly exhausted was the thing that seemed to stand out for me. During both my pregnancies I had no idea about Lyme and just thought all women felt the same as I did when pregnant. After my 1st child (age 22) I never felt the same. I couldn’t put my finger on what it was but I never felt quite like I did before the birth of baby number one. I’m not sure if women without Lyme feel this way, but it was a significant change for me. I never had the energy to play softball anymore, or do much strenuous physical exercise of any kind. My second pregnancy twelve years later was tougher on my body, but I attributed that to age. I knew it would be my last child, but I never knew what I was passing on to her. I had a friend at work that was pregnant the same time as I was and she had lots more energy than I did. She was younger and smaller than I, so I attributed it to that at the time. My first LLMD told me that pregnancy causes a relapse of symptoms, especially the actual birth. Maybe that’s why they both wiped me out so much?
What does it feel like to have sick children? Although you had no clue you had Lyme disease while you were pregnant, I am sure you will agree that it is important for women who have Lyme disease, and want to have a baby, to know what it is like for a mother to see her children’s health suffer as a direct result of having Lyme while pregnant.
It feels like their pain and unknown future is my fault. My oldest has been fortunate to still function normally with the disease.
My oldest daughter had some issues in high school with her joints and she was unable to do some of her cheer leading moves because of it, but for the most part she was and is functioning normally. She had a febrile seizure when she was 10 months old due to high fever, but for the most part has been healthy. She has very poor vision though and has to use contacts to get it corrected fully. She can wear glasses, but her vision suffers for it. No one would ever guess she has Lyme. It is in her blood, but at least for now her immune system is able to control it.
My younger daughter hasn’t been so fortunate. She has had many ear infections, two cases of pneumonia under the age of four, allergies and asthma; as well as some emotional issues at one point. Her positive IGENEX test didn’t help us get treatment for her. She was very small, about three, when we all were tested and my LLMD at the time did not treat children. He gave us Dr. J as a referral, but after repeated attempts to contact him her primary care doctor gave up. After consulting with “experts” in the field, her doctor finally gave us 30 days of amoxicillin for it, and that supposed to take care of it. I really didn’t think that would “take care” of it, but what else could I do? My first LLMD, Dr. H, believed that Lyme is passed to the child from an infected mother. He also believed it to be sexually transmitted. He said not right away, but with repeated exposure it will happen. My heart felt crushed. I had done this to my children. I had given them a disease that no one can say is cured for sure. How could this happen to us?
I am sure you have quite a strong, and valid, opinion on the debate surrounding this issue. Do you mind sharing that with us?
No I don’t mind at all. I have had numerous doctors tell me that it is impossible to pass this disease that way. Well then I would like a plausible way to explain how both my children and myself have this disease. When you think about them being born 12 years apart, and the fact that one was born in Ft. Worth, TX and the other in Vernon, TX, and they both have this disease, how can you come to any other conclusion.
Unless you have lived it, how would you know? People are too ingrained into blindly believing anything the medical community puts out as fact. But when you think about it, they often change their minds about everything from how disease spreads to the food pyramid. There is research that supports Lyme being transferred from a mother to her baby during pregnancy, but they leave out that research, and only show their own.
I also have a friend who believes it can be passed through breast feeding due to her own personal experience.
What do your children think of the situation, knowing that their health problems exist because you were infected while pregnant with them?
To make it clear once more, you did not know you had Lyme while you were pregnant. They both know that it was something that couldn’t be helped. There has been some anger and resentment, but teens do that with a lot of things. At first I think it was easier for my oldest daughter to deny the disease. I mean if I didn’t have it then it couldn’t have been passed to her. She was afraid and with so many people already denying it, it was easier. I can understand that. She has since come around to believing me and asking some questions about what she should do if she gets sick.
My youngest was so very young that she knows nothing else but having the disease. She gets frustrated and angry about having to take so many medications and about being in constant pain. She also gets headaches and the fatigue. She just wants to go do things like other kids, without the Lyme baggage. She doesn’t blame me though. We have a pretty tight bond due to going through this mess together.
Actually, I think I’ve taken it the worst just due to the guilt and heaviness of heart I feel about their futures. I know they both wish it hadn’t happened, but they understand that I would have done anything to fix it if I could. They have a lot of compassion and empathy. I think they are grateful that they both can still walk, and even run. Although it looms over them they try to just live life and enjoy their measure of health they have now. They both also know that I’m here to support them and help in any way I am able.
Knowing what you know now, what would be your advice to women with Lyme disease regarding pregnancy?
Of course I have 2 children, so for me I would not get pregnant. Adopt. If you feel you MUST have a child, please take antibiotics while you are pregnant and use a very good Lyme literate doctor to guide you through the pregnancy. OR, just get a cat. Just kidding.
Wow. Your story will most certainly help the women who read this article. Once again Melinda, thank you so much for offering your insight on this matter. Do you have any last words of wisdom or points you wish to add?
I certainly don’t have answers to all this, but I can only tell you what I’ve been through and hope that it will help someone. Please take precautions if you have Lyme and want to have a baby of your own. It is a horrible feeling watching your child suffer because they cannot physically or mentally do the things they want because of a disease you passed on to them. Watch the documentary ‘Under Our Skin’ so you can see more of what Lyme does to a child. There are more situations like mine in the film. I could have children in wheelchairs, with autism, or MANY other maladies that take away a normal life to a much greater degree. It’s a very dangerous disease and depending on where the bacteria congregate, you are taking a huge risk. I have no choice but to take what comes at this point, but if you can keep your child from having to worry about how this bacteria will hit them next, make the choice save them from it. Thanks so much for taking the time to hear my story and I hope the best for everyone suffering from this disease.
Melinda was also kind enough to take the time to share her own personal health journey with Lyme disease.
“When I was a child we lived very close to Lake Texoma for a year or so and frequently found ticks on us, so I think I was about 8 years old when I got Lyme. We had no clue about Lyme disease at the time and just picked them off and never thought another thing about it. In certain seasons it was not uncommon to find several in a day. We did tick checks at night before baths.
When my sister finally found a doctor who knew about Lyme, my mom, dad, sister and I were all tested, our tests were sent to the IGENEX lab. Everyone’s test, except my mom’s, came back positive for Lyme disease. This leads me to believe that we were all infected around the same time when I was young. My mother later tested positive as well.
For one thing, I believe I was bitten a second time by another tick that transmitted Lyme to me when I was in college at TWU. I had a bite show up on my upper leg/hip area. I thought it was probably a mosquito bite because it itched terribly. Then it got bigger and bigger and turned into a rash. I went to the nurse practitioner on campus and she said it was shingles. Shingles? At 27? She gave me antiviral medication for it and it went away in about 3 weeks. Much later when I saw an ID doctor he believed that it wasn’t shingles at all but the bull’s eye rash from Lyme disease. He said the medication hadn’t actually helped the rash. The rash had gone away on its own, since they only last around 3 weeks. So, more bacteria for me. However, this information came much later than when I was pregnant unfortunately.
After taking high dose IV Rocephin and oral Flagyl for four months I still was no better, so Dr. H said my case was too complicated and he just couldn’t see me anymore. He was primarily a research doctor and was focused on that. He said I should find another doctor who could find out what was complicating my treatment. “Great,” I thought. I went without a Lyme literate doctor for several years. I had to quit working and we filed bankruptcy, lost our home, and were in a mess. I suffered through seeing local doctors that told me I’d never get any better, just worse. I was told I’d be in a wheelchair soon. I went to physical therapy, was misdiagnosed several times, got leg braces and pretty much just felt like things were never going to change.
After I got approved for disability I found a new doctor to see who accepted our insurance. My husband and I flew to PA to see him. He immediately put me on oral antibiotics and vitamins and supplements. I was so sick for a year, and then began to improve. Meanwhile, my youngest began complaining of her legs hurting, headaches, and crying for no reason. She couldn’t explain why she was upset. I asked my new doc if I could bring her for an assessment. He agreed and she tested positive on a regular western blot test (not from IGENEX) and was CDC positive. Her Lyme was hitting her hard. He began treating her too and every 3 months we both flew to PA to see him. Later we were able to just go every 6 months. Her immune function had improved significantly and she was feeling so much better. Mine, not so much.
Last year we quit going. We needed to get out of rent houses and have a home again. Due to that, we had no funds for traveling there. My daughter is still doing well, but has had several things that point to needing treatment again. I think I will always need treatment to be honest. That is okay with me. I don’t really care if I ever recover, I just hope with all my heart that both of my children will be able to function normally as long as they can without having this horrible disease take their lives over like it’s done mine. If it were possible I’d take all their Lyme on myself. After all, I unwillingly shared it with them in the first place. I’ve had times of feeling guilty, time of feeling rage, times of sadness and pity, but mostly I feel blessed that they are still able to live their lives relatively free of any major complications .”