Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I'm so moved by all of these thoughtful posts. I appreciate so very much the candor regarding raising children. i'm glad this forum allows people to freely express the positives as well as the negatives.
Just to clarify, I would not be getting pregnant. Rather, my husband and I are considering adoption or surrogacy with another carrier. Yes, we are only considering one child.
It's such a struggle. Many of you on this board know me as I've been here for years...I've been through three different LLMDS and multiple years of abx for every different possible coinfection under the sun. I also have treated for many of the other things mentioned...viruses...for ex....I've chewed it, snorted it (kidding), imbibed it, and done it all intraveneously.
Whether the lyme is chronic or post-lyme or whatever it is, my body just simply is not getting better with more abx or the millions of supplements I've tried. It's just left in this tight/stiff muscle/twitching state. Yes, I'm dramatically better than I was but I, at this point, just don't ever see being well again.
Unfortunately, the doctor just kind of confirmed this for me. I also wanted to clarify a few points as well:
1) He did not say that everyone who has lyme develops an autoimmune state. I don't want to freak others out on this board. Apparently, I'm just part of the group that does. No, he didn't run a test for this. He just ran a Vitamin D test and a stiff person syndrome test (ugh, I'm awaiting the result of that). He just did a physical examination and looked at my old medical records.
2) No, I haven't had a positive ANA in years. It went away years ago after treatment for lyme
3) Yes, I've tried plaquenil and it made me feel horrible. The doctor did not want to start me on steroids at this point as he said that is a slippery slope. He said he thinks getting the Vitamin D between 70-100 will stave other autoimmune illnesses off (and possibly make me feel better).
4) The neurologist I saw was extremely kind regarding lyme. He really wasn't antagonistic. He just said it was his belief that no oral abx can cross the blood brain barrier but IV Rocephin. Additionally, he said he's seen patients like me who've taken abx for years and just don't get back to their pre-lyme state. They are left with residual pain, stiffness, and fatigue. BUT NOT EVERYONE!!! Remember, I had lyme encephalopathy and apparently I have a genetic predisposition for an autoimmune state. Others on this board are different.
5) The neurologist I saw was at a teaching hospital in Washington D.C...hope that narrows it down for some.
6) As for the high doses of Vitamin D, someone earlier said it makes them feel bad when they start dosing it. It does this to me as well. In fact I've written a number of posts regarding Vitamin D on this board (several years ago). When I initially start taking it in high doses, it increases my aching and my muscle stiffness. This feeling tends to dissipate after two weeks. But the first two weeks aren't fun!!! It hurts!!!!
7) I don't really feel "sick' anymore like when I initially had lyme. It feels more like I've run a marathon and my legs are tired, my muscles are super stiff and tight, and I have some stamina issues. If there were a cure for "stiffness", I would be back in the game of life again!!!
Thanks again so much for responding....Please keep the comments coming, especially about parenting....
Posts: 1155 | From Southeast | Registered: Oct 2005
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Without rereading all the above, did you say you've been treated for Babesia and Bartonella?
I really just don't understand autoimmune state. Do you have genetic testing to confirm this? Is there an explanation besides the genetics that causes this autoimmune state? I'm not arguing that it doesn't exist, but I lay fully in the lyme camp. I truly believe that most people who have "our symptoms" are just not fully treated.
When I hear the dangers of antibiotics, I just roll my eyes. ANA numbers are meaningless to me. Mine have never been consistent and only gave me the wrong diagnosis for years.
Good luck with your adoption. That is a hurdle unto itself.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi if I can chime in:
On the vitamin D it is the D3, not D2 which the liver converts to hydroxy 125 and one is considred deficient under 30 when measured in the blood.
All my readings (Vitamin D Council letter, Dr. H (B.U. D clinic, etc) confirm one needs to be in the 70 to 100 level. So I agree the hydroxy needs to be over 70.
I supplement with 5,000 IU per day. Note it is not the amount one takes but ones ability to absorb and convert to the hydroxy 125.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Bugg - I've been ill for years, having tried many many things....spent hundreds of thousands of dollars.... you know the story. Finally, I am seeing significant improvements by treating parasites aggressively. I never would have guessed I had parasite infections. I had no signs, no stomach issues, etc. Since I've begun treatment about 8 weeks ago I am passing tons of parasites, and my symptoms are almost gone (I'm having a particularly good week:). From the research I've been doing, I'm coming to believe this is a problem for most of us, if not all of us. It may be the primary reason why we cannot get well. No about of abx will get rid of parasites. I'm hoping and praying that once this parasite infection is under control, my body will better be able to fight the Lyme and co-infections. I have a very good, encouraging feeling about this. Just wanted to share.
Oh, regarding auto-immunity, I believe it's because we have some infections that have gone intra-cellular and it's causes our immune systems to go haywire. Once we get a leg up on the offending pathogen/invader, we can modulate the immune system and auto-immunity will go away. (I've been told I have auto-immunity issues also, but I have great practitioners who are guiding me....based on the theory above. So far, so good.)
Finally, my husband and I made the decision to not have children because we knew we would not have a healthy child. We are aat peace with this decision. (Recently I found out I am homozygous for the MTHFR gene, which probably would have assured a very sick/handicapped child because of the folic acid issue.) There were many many times when we were struggling with this illness and would say "thank God we don't have children". It would have been more than we could handle, and to us, would not have been fair to our child. I don't judge anyone for their decisions, it's such a personal choice, and not an easy one. For years I've considered being a foster parent because I have so much love to give, but until my energy is consistent and good and I feel healthy daily, I will wait. And continue to make lemonade. Life has so many other wonderful things to enjoy. It's ok.
Posts: 2238 | From East Coast | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had my first child at almost 38 and the second one at 41 and they were fine. It was hard for me to get pregnant but I did not have lyme disease.
The problem for me can be found in the methyl cycle mutations. My daughter is having trouble getting pregnant too. I know you said you weren't thinking of carrying a baby yourself - but more than likely you can if you want to?
As for the auto immune disease - so what? LDN stops auto immune diseases AND it increases fertility! Not to mention it is great for the immune system.
Where are the scientific brains of these doctors to prescribe one size fits all remedies for multi complex diseases? SOME people have a mutation that make it difficult to make vitamin D and they are very susceptible to diabetes, MS whatever. That does not mean YOU have that mutation. Good grief. Just get the test and you will KNOW what you have and what you need to take.
You can buy GABA. It is often low when you have the methyl cycle mutations. Did he tell you to avoid taurine? There are ways to by pass these problems so your body can function better. This helps you to recover.
I think adoption is wonderful. If you love children, they don't need to be your own biologically to be your own emotionally. Try to get yourself into reasonably good health before you take on an infant because they are exhausting. I don't know how I made it through infancy and I was not sick.
Just don't give up on being well. Try treating protomyxzoa. It causes auto immune diseases. The low fat vegan diet made a big difference for me. I thought my fatigue was babesia. I was taking massive amounts of anti malaria's and got somewhat better but then I just crashed and nothing helped. I began to not be able to sleep which is when it hit me, This is something else>
There are a few things I have learned that I try to pass on when I can: 1. You have a lot of infections. If you aren't getting better, more than likely you need to treat something else. 2. Methy cycle mutations make you more vulnerable to disease. Find out what they are and treat them. 3. LDN is the best "tonic" on the planet. It will boost your immune system, prevent or halt auto immune disease, increase energy and has a calming influence. 4. Treat as though you have protomyxzoa. Do the low fat vegan(ish) diet and see if you improve.
Many people are making the mistake of being on a meat based high protein diet. Most of us have the CBS mutation and when you eat a lot of protein it causes ammonia to build up. Coupled with the other mutations you will have, this creates a mess - low dopamine, low serotonin, low GABA, low nitric oxide>>>brain fog, fatigue, depression, inability to clear toxins, poor immune function, auto immune disease, cancer, etc. . . .
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Sorry but, how invasive and unprofessional for a neurologist to make a judgment about someone's choice to have children! Sounds like a top notch narcissist.
If you have the compassion and desire to have children, I believe God will give you the strength.
Posts: 14 | From Los Angeles | Registered: Mar 2009
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posted
Sorry but, how invasive and unprofessional for a neurologist to make a judgmental about someone's choice to have children! Sounds like a top notch narcissist.
If you have the compassion and desire to have children, I believe God will give you the strength.
Posts: 14 | From Los Angeles | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While this doctor is not lyme literate, it's still a valid consideration regarding the energy to raise a child.
But this doctor just dropped all hope for help because of the narrow view of lyme.
WITH GOOD TREATMENT, you can feel better to then be able to have the energy and strength required.
It's not about ignoring the fact that you are ill and then either giving up -- or trying to go ahead and birth or raise a child anyway (which is not fair to the child if that can be avoided).
But - WITH PROPER TREATMENT - there is every chance for strength. I've read of many who turned their lives around totally against great odds
with proper treatment, covering all the bases. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Your mailbox is full. Can I ask how your are treating the parasites, with what and how much?
My salt and C unfortunately are on hold for a while.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors. The mechanism of action that leads to its rapid analgesic effect is simply unknown.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I agree with all of the above. Get your D3 up, it can't hurt. But, you might have something else going on that the Rocephin wouldn't do anything for.
I'm a believer now in the parasite treatment. It made a difference in the back pain my daughter suffered with for so long.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I had a child when I was 35 and tried in vain for the next 10 years to have another. I undiagnosed lyme. I took every hormone possible and tried 4 fertility clinics.
At 42, I went thru early menopause. I was devastated but didn't want to give up. Since money was limited, I pursued an embryo adoption program at the Cooper Institute in NJ. http://www.ccivf.com/
I got pregnant on the first cycle at age 49. Sadly, I lost the babies (2) in a few weeks but after trying for 10 years at least I had some success. I stopped trying after that because I felt guilty that I had caused the embryos death since my uterus was too old to support the pregnancy.
A year later, I was diagnosed with ALS. If I'd had the twins, I would've died and my husband could never have cared for the babies. Now I am content to raise our 16 year old son and savor every minute I have with him, even the moody teenage years.
Don't give up on having children. You will find the strength to raise them. They give you a reason to live.
I recommend the Cooper Institute very highly. They are inexpensive (about 3k per transfer) compared to other adoption or surrogacy fees. You could also consider foster parenting a special needs child.
Good luck to you and good health. You will make wonderful parents.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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