Some of you know I've been a veteran on this board for years---I had lyme 7 years ago and have treated for years with orals and IV abx, HBOT...etc...
Anyway, I know some of you asked me to post my results from my appointment with the lyme neurologist from a teaching university in the northeast. I went to see him because, despite years of treatment for everything under the sun, I still suffer with residual pain, muscle stiffness (especially in my legs), and stamina issues.
He said the following:
1) He does believe that lyme disease is all throughout the country. (I contracted it in TN).
2) He confirmed that I did in fact have lyme disease years ago and that I had lyme encephalopathy as well. He said he doesn't think the IGENEX testing is reliable as he sees a number of false positives on it. He said, though, that you can't always go by the testing. In my case, I had the erythema migrans rash, for example....
3) I told him the only drug in the years of taking abx that I could really point to which helped was the IV Rocephin. He said it helped me for two reasons: a) it was able to cross the blood-brain barrier where no oral abx could and b) it contains GABA which gets depleted by the lyme bacteria in the brain. GABA is necessary to keep the nervous system calm.
4) He said that lyme can cause permanent damage to the nervous system which cannot be picked up on an MRI or CT scan. He said it's the equivalent of standing on the moon and trying to see people on the earth...the resonance just isn't powerful enough...
5)I told him the Rocephin completely turned around my cognitive functioning but I felt physically worse after coming off the Rocephin. He said this is quite common because you're taking away the GABA that the Rocephin was supplying to your brain.
6) He performed a physical neurological assessment and saw that I have hyperreflexia in my quadriceps and triceps. He also says one side of my back along my spine is slightly higher than the other. He is running a blood test for the GAD marker to confirm that I don't have stiff person syndrome.
7) He said in my case I am a classic post-lyme syndrome patient of whom he has seen many in his practice. He said that he believes I now have an autoimmune disease. He said I had a genetic predisposition for this and that the lyme was the match that lit the fire. He said not all people with lyme will go on to develop this type of autoimmune state. Incidentally, he didn't run any tests for the autoimmune disease .....I'm assuming he said I'm in an autoimmune state based on his experience seeing other post-lyme patients...
8) He told me to take 50,000 IUs of D2 for three months to get my range between 70-100 (it's currently at 35). He says the studies (including one published last month) are showing a zero relapse/remitting rate in MS patients who keep their levels this high. He said you MUST have your levels this high to calm down your immune system and keep it from attacking your body.
9) He held his fingers an inch apart and said "You're this close to developing some other autoimmune disease like MS or lupus" so you need to get those Vitamin D levels up. Again, I don't know how he knows this as the only tests he ran were for Vitamin D and the GAD (stiff person syndrome test). I guess he's basing it on his experience??? The only autoimmune disease I know of in my family is my grandmother had RA and my mom had uveitis....
10) The only palliative measure he could offer is Gabapentin/Neurontin (which replaces the GABA) and which I've already been taking.
11) He said you must exercise at least 20 minutes every day as that acts as a natural steroid.
12) I asked him about any cures/treatments/taking more abx. He said taking any more abx at this point would be futile. He also said the only cure he sees on the horizon is stem cells...he didn't say how long in the future...
13) Finally, I told him my husband and I are in our early forties and would either like to adopt or pursue surrogacy immediately. He told me that he didn't think that would be fair to the child. He said borrow someone's toddler for a week and then you'll see you can't do this.
Needless to say, my husband and I are DEVASTATED after this appointment. We've held out such hope and I've tried everything I could to get better. Not having a child is just crushing to us.....
Anyway, I told many of you I would report back...I only wish I had more hopeful news to share...
Take Care.....
Posted by Keebler (Member # 12673) on :
- How did you come to the conclusion that this doctor is a top lyme neurologist?
Who told you so?
I do not think he is. "Post-lyme symdrome" is really usually still "chronic lyme" but those doctors who use that term do not believe in chronic lyme or adequate treatment.
[Although you had years of treatment, it just may not have been the winning combination - yet. And you might consider other support measures &/or RIFE machine. Did you do liver and adrenal support all through your treatments? Even if so, perhaps a LL ND could help.]
Did you make sure that he is a member of ILADS?
Is he?
My guess is that he is not.
What ARE his lyme affiliations? Which experts does he hold in high esteem? My guess is they are IDSA.
By the way, you want D3, not D2 supplementation. Either way, too much can be toxic. You need to get your levels checked first. Seek out a couple "D" experts on this matter.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
----------
BEFORE making an appointment, try to find all the doctor may have written, their affiliations, WHERE they learned about lyme, etc. This will help you figure out the extent of the expertise and if it's it true or not.
We have to research the doctors beforehand. You can't take a Volvo to a Chevy dealer and visa versa.
Still, we can find ourselves in the hands of those who say they are lyme experts but who are not, at all.
I've been there may times and it's such a kick in the stomach. I hope you can find one or more true experts to guide you.
Keep going. Others have found success after many years. It is possible, indeed.
========================================
Did this "top neurologist" even consider other stealth infections? My guess is that he did not.
Topic: Looking for long term pain management -
Posted by bcb1200 (Member # 25745) on :
I agree with Keebler. Unless it is Dr. K in CT or Dr. R in MA, there really arent any other LL Neuro's.
I'd be careful.
Posted by Keebler (Member # 12673) on :
- Hint: you say this doctor is with "a teaching university in the northeast"
As a rule, the "teaching universities" categorically deny the existence of chronic infection, especially lyme. Most are vehemently opposed to chronic lyme.
The curriculum is driven by the IDSA -- and driven and supported by the pharmaceutical industry & the insurance industry.
Remember, the pharmaceutical industry would rather have us all on antidepressants and sleep drugs and then energy drugs for life rather than full force support infection treatment.
They also fail to recognize the importance of liver support to help reduce the stress of pharmaceuticals.
Now, the pharmaceutical industry actually WRITES much of the course work for medical colleges. Really. They give money and they write the course outlines, dictate what is to be taught and what is NOT to be taught.
We need to find independent thinkers like the doctors with ILADS. They are not with "teaching colleges" as the IDSA would never allow that. -
Posted by NEMOM (Member # 31370) on :
I'm a woman in my early forties with two preteen children. We all have lyme disease and co infections. I had breast cancer and double mastectomy last year. Plus my youngest has additional chronic health issues.
My children give me a reason to get out of bed every day. They give me hope, love, joy and a reason to keep fighting this disease. They are a true blessing in my life.
I'm sorry but I think that Doctor is a complete --- and out of line for telling you not to pursue your dream of children. Who is he to tell you what you can and can't handle.
You and your husband may be the perfect parents for a child with health issues that other "healthy" parents may not understand. You may be the perfect parents to teach them compassion so that they may grow up and become a wonderful physician or nurse who works with lyme patients.
SHAME on Him!!
If it is your dream to be a Mom-the greatest job in the world even with Lyme disease-then you and your husband need to follow your hearts. There is a kid out there waiting for your love and compassion.
Posted by canefan17 (Member # 22149) on :
No oral abxs cross the BBB?
Not sure I believe this. I've taken quite a few meds that absolutely did (Flagyl & Biaxin to name a few)
Also I got my Vit D levels in normal range and nothing changed until I treat Bart.
Posted by Sammi (Member # 110) on :
I agree with the other responses.
How is this doctor a top Lyme neurologist? Who referred you to him? To me, many of his comments raise red flags especially believing in "post-Lyme snydrome." He believes you have an autoimmune disease, but he won't say which one or do any testing for them? Also, how can he possibly know your capabilities of raising a child?!
There are many reasons that some people who have tick-borne illnesses cannot get well. I highly recommend getting evaluted by one of the top Lyme doctors in the country.
A top-notch Lyme doctor will be much more thorough and will likely have more experience with difficult cases than the doctor you saw. If you see a well-known Lyme doctor, I believe you will leave the appointment with helpful information, a plan of action, and a much better prognosis for the future.
Please get another opinion from a reputable doctor.
Posted by WheelWatcher (Member # 34223) on :
My husband and i both have lyme, and we do have a toddler. Yes it is hard. When he was first born my husband was so ill that all he could do was lie on his back with our tiny son snuggled on his chest for hours at a time. When things have been the worst we have asked for help and although neither of us have family that can help, we found that our adopted family/friends did help us out some.. some mornings mommy & daddy only have the energy to lay on the couch while we put on a bunch of dora the explorer! But he will come and snuggle with us on the couch when we are so tired and he wants affection. he has learned to be more independent in his play. We figure out ways to adjust as we go along. He is very happy! Our family is not "normal" but whose is?
Dont let any doctor take away your hope. Children are amazingly resilient, and you will be surprised at what reserves of energy you can tap for your own child when it is necessary. You will love your little one and will make it work, it is absolutely possible to have a lyme filled family that is still happy, filled with love, and getting along in the world.
Posted by TerryK (Member # 8552) on :
Ditto what Keebler and others have said.
Also look at toxins as a cause for some of your on-going symptoms. There are lots of discussions here on HLA testing/treatment for biotoxins, methylation, pyroluria etc... Have you looked into any of those avenues? Also parasites and heavy metals.
Many doctors are not aware of these issues and they can make a big difference.
Results are not only about infection but about the body terrain.
Terry
Posted by Keebler (Member # 12673) on :
- TerryK raises good reminders. More detail and links for all she mentions are in the "Diagnosing Lyme Disease" thread above. -
Posted by bcb1200 (Member # 25745) on :
And incidentally my LLMD quoted research from Germany which shows that high dose doxy and mino cross the BBB and are just as effective on the brain as IV Rocephin
Posted by Dekrator48 (Member # 18239) on :
He wants you to take D2?
Do you mean D3 instead?
Posted by kim812 (Member # 17644) on :
I am with you Bugg...I believe what the doctor told you as I am a classic case of neuro lyme. The only thing that put me at 85-90 percent was Rocephin. I thought my life had begun again...until I had to go off due to gallbladder issues and relapsed.
My body feels as though it is always in flight or fight mode. I never feel calm inside my body and my mind never shuts down. I feel as though I could be you.
I am so happy you wrote about your appointment because now I understand why I am also not well after 8 years and tons of combos of abx. I also believe I could keep taking them and they won't help my permanent symptoms.
I suffer from nerve pain...poor stamina and fatigue..along with very poor sleep quality. I was told these are permanent neurological symptoms from the original infection and after all I have taken and been though I believe it.
I am sorry you had such a disappointing appointment but I am confident in what your doctor told you because I feel that is the same with me and have for a long time now....
Posted by kim812 (Member # 17644) on :
I also wanted to add that I went to a top notch Lyme doctor who couldn't get me well when I had to quit the Rocephin...I am not going to list all the abx combos I was on but it is a very long list. I also tried Bicillin injections for 3 months 3X a week which didn't help....along with herbals and anti virals.
I also went to a sleep specialist who says my poor sleep quality is from the infection back in 2004 and the chances are high that it is permanent. I have tried every sleep medication but nothing gives me that refreshed...rested and ready to go feeling in the morning....never..even though I feel as though I am getting a good nights rest.
Even though this disease has defintely put a huge strain on my life and family I still try to do whatever I can so if you want a family then I say go for it...We might have permanent damage but I still am not giving up my dreams to pursue what I want even though it might take a little longer....
Posted by Keebler (Member # 12673) on :
- True, there can be permanent damage but a chronic stealth infection is not called "stealth" for nothing.
We still have so much to learn about borrelia and other tick-borne and other stealth infections.
Kim,
Wonder if you might consider RIFE treatment? Some for whom antibiotics failed have found success with RIFE. -
Posted by Keebler (Member # 12673) on :
LL Naturopathic links here, too. -
Posted by Bugg (Member # 8095) on :
Wow, I'm so overwhelmed and touched by your kind and thoughtful responses..
To try to answer some of your questions, he was referred to me by others I met on lymenet. He didn't say chronic Lyme doesn't exist. He just believes that after all of the years of multiple abx combos that I tried that more abx are futile.
Prior to him I saw three different LlMDs, with the last one being Dr. M in NY. I've done years of IVs, Oral abx, Hbot, saunas, supplements....and treated with antivirals....
As for the vitamin D, I was actually in the normal range on the blood test. He said however that you must get your levels between 70-100 to calm down the inflammatory process created by my overactive immune system. He wants me to take the d2 in high doses initially and then switch to d3,5000 units a day.
The child issue is why I've been crying for days. Some of your kind words as parents have meant so much to me. I know I'm 42 and I know surrogacy or adoption can take years. I feel like I kept trying to get better to have kids and now it's too late.....
I really am so heartbroken by his words so I really appreciate your input.....especially about children...
[ 07-19-2012, 04:48 PM: Message edited by: Lymetoo ]
Posted by TerryK (Member # 8552) on :
Kim wrote: I suffer from nerve pain...poor stamina and fatigue..along with very poor sleep quality.
I hadn't slept well in 20+ years. Woke up every few hours and averaged 3-4 hours a night. The active form of folic acid which is part of the methylation cycle treatment allows me to sleep 6 hours + most nights and I get 3+ hours straight without waking usually more. It seemed like a miracle. Not sleeping well will depress your immune system and you will never feel well.
I would NOT stop looking for answers. There is new info out there and some of it is life changing.
Terry I'm not a doctor
Posted by Catgirl (Member # 31149) on :
Bugg, I am so sorry to hear this.
Have you considered protmyxzoa? It responds well to a low fat diet (15 grams/day). It's worth a try.
Also, you may have a methylation issue, so the folate (not folic acid) would also be good for you.
I have never had much respect for doctors (except my current one and his staff). Some of what doctors say may be right, but for the most part, all the docs I've seen in my lifetime (middle aged) were just guessing and basing their opinions on western medicine (lacking). Some were complete morons.
This doc's language leaves me wondering how good a doc he really is. Some buzz words: "post lyme syndrome" WTF? And abx won't help? This guy sounds clueless about lyme.
I know you've been on this board for years and have seen it all. This is an opportunity for you to set some new goals, re frame, and whatever you do, don't give up.
Hang in there!
Posted by MichaelTampa (Member # 24868) on :
By the way, there are other ways to kill lyme besides abx and herbs and hbot and even etc. GcMAF is one way, for example, albeit a somewhat expensive one. I know I am going only by your recap/discussion here, but it sounds like he's saying you're tried abx for a long time, so there's no more infection, and any problem must be autoimmunity. NOT SO! Perhaps it does suggest abx, or at least abx alone, may not be the best way to go for you, but it doesn't mean the infection is gone.
Posted by Lymetoo (Member # 743) on :
The DR M you saw is not top-notch, in my opinion. I'm removing his location.
Best wishes as you pursue good health and children to care for!
Posted by poppy (Member # 5355) on :
This doctor was long on opinion and short on proof. Apparently you could have just told him your history on the phone and without any further investigation, he would have said the same thing.
The trouble is that some people with chronic tickborne diseases do not get well in spite of treatment. This does not mean they are not sick with those diseases. It means that there is no cure. My criteria for chronic lyme treatment effectiveness and deciding whether to continue is whether it helps with symptoms. If a person is better on treatment than not, then it helps. You are the only one that knows this.
If you should decide to get pregnant, though, it would be dangerous not to get treated during that time. Do not breast feed afterward. Or at least be sure to follow the advice that Dr. J has given on this subject. There is a video of him on this subject somewhere.
Be sure to determine which Vitamin D he recommended. It should be D3, not D2.
You did not say what your coinfection status was.
Posted by Tucker-Bell (Member # 37578) on :
Hi Bugg,
I'm really knew to all of this. So I can't say much regarding the medical side.
But I extend my deepest sympathies to you regarding receiving news about considering the idea of not having children. That must be some of the most difficult news to hear and my heart goes out to you a million times over.
It seems rather inadequate to say that we always have to believe that everything happens for a reason, but if we don't have faith in that, at least for me, handling the craziness of life, would be at times too much. My mother use to tell me, that sometimes things don't work out the way we planned, but perhaps that was the plan all along.
There is a book that is very dear to my heart, I've read it many times, (and I rarely do that with books) the messages it delivers are beautiful. I strongly encourage you to read it, and perhaps it can help you find some peace. It has saved me before. It's called "the forty rules of love" it's by a Turkish author named Elif Shafak. But it is one of her best known books so it is easy to find in the states. Please read it, it's wonderful.
With warm regard!
Posted by CD57 (Member # 11749) on :
Vit D is very controversial. I was on huge doses of it and just got sicker and sicker.
Posted by CD57 (Member # 11749) on :
Agree with the other posters. It is not true that other abx do not cross the BBB....our BBBs are typically inflamed anyway, which allows for easier passage of abx.
Re his comment about the kids....don't listen! In fact, your chances of having a healthy baby are higher since you've treated so much, so long. You'd still want to be on abx throughout the pregnancy and test cord blood.
What is your co-infection status? I bet he had no knowledge of these at all.
Glad you posted about your visit, but please take what you want and leave the rest. My LLMD said that neurologists are the worst offenders when it comes to assuming that everything is in the brain. You can have symptoms that manifest in the brain that are due to microcirculation issues downstream, but it does not mean that bugs are in the brain. With the exception of borrelia, most of the bugs we have don't want to be in the brain....they want to be in the nutrient rich blood.
Posted by CD57 (Member # 11749) on :
One more comment -- interesting as he is saying the HIGH dose of Vit D is essentially immune suppressing (here he says anti-inflammatory).
Posted by tickle (Member # 36441) on :
Bugg, that "specialist" is a quack. Please don't give his advice any thought and seek a true LLMD.
Posted by koo (Member # 30462) on :
Is it just you who has Lyme or does your husband have it as well? If your husband doesn't have it I am sure you can make your own judgment call on whether you can handle raising a child.
I will say this though. I was an athlete, distance runner, weight lifter, and I have difficulty holding my 7 month old grandson for any amount of time. It is devastating to me.
I am (was?) a young 50 and normally this would have been a piece of cake for me. This is an unpleasant reality check for me but I believe I can still get over this and get stronger.
Posted by kim812 (Member # 17644) on :
I have not tried RIFE...I am still working with my doctor on different approaches. That will be something to bring up at my next appt....
I am still not even certain what infection I have. I never had positive Igenex or rash...just became sick overnight and have never really recovered except for the remission while on Rocephin.
I was also a runner when I became sick and was hoping to run a half marathon...that was almost 8 years ago....now I can't run at all.
I won't quit trying...I just don't believe that abx is the answer for me.
Posted by TerryK (Member # 8552) on :
"He said he doesn't think the IGENEX testing is reliable as he sees a number of false positives on it." Bugg, Did he say HOW he knows they are false positives? He really does use the same rhetoric as the IDSA. I've read many times that false positives are rare. It is much more likely to have a false negative.
Terry
Posted by pug7 (Member # 36995) on :
I was on this board starting in 2001 and have returned sporadically.I am just saying this first to show that I am experienced and knowledgeable and my family has been through the same Lyme wringer that many of yours have.
My experience and symptoms are almost identical to yours.
And yet, I have come to the same conclusion about autoimmunity lingering after active Lyme infection, as this doc. For my daughter and myself, it progressed to lupus (and the cycline antibiotics can also trigger this, as a side note). I wonder why he did not prescribe Plaquenil for you, which calms the immune system. And a warning that 50K units of D (should be D3) can cause a reaction. I do 3,000/day.
Anyway, I would like to say, most importantly, that despite my illness starting in 2001, which was intense for several years and is still with me, though improved, I still raised kids ages 8, 11 and 15 in 2001. I cooked, when I could, drove them around and most of all was there for them emotionally.
I would go ahead and try to have a baby, honestly. Your age at 42 may mean it won't happen easily, that is my only caution. But by all means, parenthood can help us overcome obstacles in order to care for those little ones we love.
Posted by tickle (Member # 36441) on :
I was 43 when my youngest was born, and apparently I had lyme then. I didn't know it yet, but she's just been diagnosed with congenital lyme, so I know I've infected a lot longer than I've been sick!
She's a wonderful kid, and the light of my life. She isn't 'sick' with lyme, but does have markers such as ADD and so on, misdiagnosed, of course. If I knew I had lyme when I was pregnant, I would have been treating and maybe she wouldn't even have those symptoms or any lyme at all!
Good luck to you, I sincerely hope things work out in the baby department!
Posted by poppy (Member # 5355) on :
A disregulated immune system, caused by active infection, can produce autoimmune signs. People who have successfully treated the infection lose the autoimmune markers.
Until proved otherwise by honest and competent research, I will not believe in autoimmunity in the absence of infection.
And if such a high dose of Vitamin D is suggested as an immune system depressant without opposing it with antibiotics, it would certainly not be appropriate. The suggestion of plaquenil, though, is a good one.
Posted by Love my kids (Member # 32876) on :
I too have chronic Lyme, and both my kids have congenital Lyme (didn't know I had Lyme when I had them). I want to let you know that it is difficult to have Lyme and take care of young children. BUT, the joy they bring is as healing as it gets. DO NOT accept what this doctor has told you as your fate. DO NOT. START NOW and research all the ways you can create your family. Will you need more support than some, likely yes. But, do not deny your future children the mother they are looking for...not all children are blessed as being truly wanted. You will make it work. I have. On the really dark days, I think, maybe I shouldn't have had kids. But, guess what, life would be so much worse. My children are loved and appreciated and well cared for. I am not always the mom running around with them, I often sit at the park and watch them play. I just don't have the stamina. But, I smother them with attention in all other ways possible. It's the quality of the time and the unconditional love that allows children to thrive. Please contact read the archives on this topic and reach out to others with young children. Look at your resources, financial and otherwise. What is your network like? You can do this. If it is your life's dream to have a child, then you MUST have a child in your life. It will be part of your healing.
Posted by Limeaid (Member # 22357) on :
Hello everyone, I am an Oncology RN and
was diagnosed with Lyme Disease/Babs over 3 yrs
ago. I
have recently returned back to work(part-time)
after being unable to work. I am now dealing
with a pituitary tumor and am waiting to see a
specialist to decide what treatment shall be.
My Lyme doctor believes this could be the reason
why all of my treatment(including IV and oral
antibiotics) haven't worked for me. I read a lot
of great advice and support being given on
Lymenet on a daily basis. I do worry, however,
because I read a lot of advice telling people to
disregard what physicians say, and even giving
suggestions to the contrary and medical advice,
when you aren't trained MD's. I know we all
have learned a lot about Lyme and associated
infections, and we feel strongly about certain
topics. I do too. However, I think it is a
good reminder, that we have to be careful in
advice we give. On another note, there is
much new information coming out on vitamin D and
treating with high doses of it for certain dis-
orders and conditions. Maybe this neuro doc
is prescribing this for her for one of these
reasons for which we are not aware of and know
about. This post if not to make anyone angry or
upset, so please do not take it that way!! I
think we need to be careful and aware that
we can't prescribe medications or give medical
advice unless we are trained to do so.
Posted by tickle (Member # 36441) on :
I hear your concerns, Limeaid. And you make a lot of sense.
But Lyme is a new frontier and we are all learning, including the doctors.
I agree that because none of us are Doctors, and we should be careful about advice we give out. However, there's such a massive amount of conflicting information regarding lyme disease and its treatment, that we all have to be our own advocate. And we need to help each other bring zillions of bits of information together and try to make sense of it.
As far as the above mentioned doctor goes, he lost me at; "He does believe that lyme disease is all throughout the country", and, "he doesn't think the IGENEX testing is reliable as he sees a number of false positives on it ", and so I figure the rest of his insight has to be taken with a grain of salt. If it quacks like a (lyme) duck...
I also believe that, without the advice and insights we share with each other on forums such as this, we lyme patients would be in dire straights. From help finding a good doctor, to reassurances about the treatment we've been described and comparing symptoms....and so on, yes, we need to share advice. We often have to be our own doctors! We're (most of us) intelligent enough to weed through all the information to find what fits us.
But we NEED each other because 1. the medical community is divided, 2. the research is light years behind the infection, 3. not everybody can afford professional health care!
Posted by Limeaid (Member # 22357) on :
Hi tickle,
Totally agree with you on all points..I just
wanted to put that out there. Definitely don't
want to offend anyone!
Posted by seibertneurolyme (Member # 6416) on :
I am guessing that you saw the well known LLMD neuro who is on staff at Yale and is a big proponent of IVIG?
If so, then you should know that hubby saw him back in 2003. When 2 months of IV rocephin did not cure him the doc wrote in his office notes that hubby had post lyme autoimmune disease -- with no tests to support that assumption. That was the only antibiotic he had had at that point after being sick for almost 3 years.
The points about GABA are interesting -- hubby takes passionflower extract as suggested by Buhner to help increase GABA -- it definitely helps with sleep for him.
Hubby only improved about 25% at most on the rocephin and started losing ground within just a few days because he also had untreated and undiagnosed babesia and bartonella or BLO and probably ehrlichia or anaplasma as well.
From discussions with other patients I do not think the neuro that hubby saw is up to date on coinfections any more now than he was back in 2003.
Hubby was also tested for some genetic markers by this neuro -- teaching hospitals are big on looking for rare genetic diseases.
Have you ever had a brain SPECT scan? -- that would be much more definitive than an MRI or CT scan. If the neuro did not suggest this test then I would say they are not up to date.
My 2nd suggestion would be to either do a Clongen bloodslide or F lab bloodsmear or find someone with a phase contrast microscope. Those tests can show you whether or not you still have pathogens which need treating.
This is not medical advice, just suggestions based on hubby's experiences.
Bea Seibert
Posted by pug7 (Member # 36995) on :
One of my kids got type 1 diabetes, an autoimmune disorder, that was triggered by an infection. Some people on this board do not believe in molecular mimicry, but type 1 is a good example of autoimmunity set off by a virus, that persists after the viral illness heals. Her beta cells were destroyed over several months after recovering from coxsackie. The autoimmune process started with the virus,and if her beta cells were to regenerate magically (not a possibility), they would be destroyed all over again.
People with HLA-DR4 genetic type are more prone to "intractable" illness that could be caused by autoimmunity. Dr L wrote about this several years ago. Try googling "Lyme Disease: A Sensible Pursuit of Answers." My daughter and I both have this genetic type.
Prednisone makes us much, much better. And 10 years ago, we had very positive Lyme tests, at Quest as well as Ignenex. How to explain the benefits of steroids other than to say we now have autoimmune disease in the absence of infection?
At this point, I think there is some rigidity on both sides of the Lyme wars. If I had followed the party line, I would still be on antibiotics (after 6 year already on) uneccessarily, with all the risks inherent in that course. Instead, I am on Plaquenil and very occasionally a tiny amount of prednisone, and I am feeling better every year that goes by.
**edited name of LLMD**
[ 07-20-2012, 11:34 AM: Message edited by: Lymetoo ]
Posted by poppy (Member # 5355) on :
Well, pug, you can't blame us for having doubts about medical issues that have been so lied about. And regardless, autoimmunity diagnoses are too often stuck on sick people because doctors are too lazy or too ignorant to look for another cause. It might even be that autoimmunity is described as the cause in more lyme cases than infection is. In fact, I am sure of it.
Glad you found a solution, and wish there was real honest research into the autoimmune situation so we would have more confidence in knowing the truth as it pertained to any particular patient.
Posted by Keebler (Member # 12673) on :
- Other than other things that can be independent of "lyme complex" -
Matters of autoimmunity can be considered - but ONLY by someone who also knows that lyme can, indeed, be chronic.
If they don't have that knowledge and are not up to date on all the science we currently have about lyme in all its forms, cycles and biofilm issues - and what it takes to address all facets
then they simply cannot then just decide it's autoimmune or post-lyme malaise.
IF they are fully educated, then I would be more inclined to trust their assessment.
And - they also need to look beyond lyme to other tick-borne, other stealth infections as well as the other things that go hand in hand with lyme such as
parasites & heavy metals.
In addition, knowledge about how to protect the liver during treatment is essential. Absolutely essential. Liver damage/stress both from infection and from some of the treatments can often be mitigated. -
Posted by lymeboy (Member # 24769) on :
Rocephin was not very helpful for me. I am extremely Neuro. I am not sure your doc is totally right on everything.
I'm sure there are plenty of people who will get angry at me for saying this, but if I was wondering about children, I am not sure I could do it. I have a teenage daughter. She is the love of my life. But the past two years have been incredibly hard, and my health issues have made her life worse. I'm completely broke. We live with my dad. I am miserable most of the time. Just thinking about it makes me want to cry. it sucks. I cannot imagine having a new child right now, or ever again. There's the possibility you could pass on the disease or even have a child with different health problems, due to your own compromised system. This is just my OWN OPINION. We have a responsibility to protect our kids, and concieving a potentially sick child, who may or may not have parents that are up to the task, just doesn't feel right to me.
I apologize to anyone that is offended by this. Obviously you are free to do what you feel is right.
All that being said, Your LLNeuro may not be all that great.
Posted by Keebler (Member # 12673) on :
- Lymeboy,
I see nothing offensive at all about your important consideration that children be invited into a family with parent(s) who will likely have reasonable strength (on all levels) for the task ahead.
It's certainly a valid consideration, as well as doing everything possible to be sure a baby would not contract lyme or other TBD even before birth.
And here's to strength, endurance, hope - and success for all here. -
Posted by jackie51 (Member # 14233) on :
I had my second child 3 months before my 43rd birthday. It can be done. It is very exhausting and while the doctor may have a point, it's amazing what maternal instincts can do.
Anyways, back to the appointment. As I'm sure you have but this is a suggestion. Go back and reread Dr. B's treatment guidelines. Highlight ANYTHING applicable in your case, pay very special attention to both the co-infections and supplements. It sounds like you've seen plenty of well informed doctors. You are on your own and need to figure this out.
Always keep searching. Maybe ABX isn't appropriate in your case now but there must be some herbs to contemplate. Have you already tried byron white formulas, have you already exhausted Planet thrive remedies? Have you treated for parasites?
I would think if you really want a family, then go after it. Don't let one doctor change your entire life.
It is not how many times we fall, but how many times we get up.
Posted by pug7 (Member # 36995) on :
Just adding that we have extremely high ANA's. It is suspicioust that this doctor did no testing. We have had responsible LLMD's who did testing and told us that although we had positive Lyme tests, we also have persistently high ANA's, which could mean lupus. This is relevant for those who are on tetracycline, minocylcine, and not sure about doxy, because they can trigger or exacerbate autoimmunity. It is also relevant because strengthening the immune system (as for fighting infection) can greatly worsen autoimmune attacks, for obvious reasons. Finally, good news is that Plaquenil is used for Lyme and other infections, and also for autoimmune problems.
I don't think anyone has gotten anywhere w/research on sorting this out. It is not even clear what cross reactivities occur with testing. Autoimmune problems can cause false positive Lyme Elisa's, but I have only found something about lupus affecting the 23 band in all these years, once.
Alternative/integrative/functional medicine seem to offer a lot of us the most help once we have done antibiotics for whatever time it takes to get launched in healing. I don't know how many of us get launched but have to continue indefinitely, but there are many.
Posted by CherylSue (Member # 13077) on :
My LLMD in Illinois says there is a new test, although expensive, can test if the Lyme is active and whether a woman should get pregnant or not. He stays pretty current with ILADS and attends conferences.
Sorry, I don't know the name of the test, but a good LLMD would know.
Posted by poppy (Member # 5355) on :
The test you describe is the new culture by Advanced Lab. Have to be off meds for a month.
Posted by beaches (Member # 38251) on :
Please don't let another person define your life or curtail your dreams. Where there is a will, there is a way. There are so many mothers who have dealt with serious illnesses before, during and/or after giving birth/adopting. If anything, in my opinion, we are better mothers despite the hardships of our own illnesses. Go forward with your life and pursue your dreams. Best of luck to you!
Posted by Charles12 (Member # 24729) on :
Judging from your post I've seen the same Neurologist. He gave me the same spiel (give up your dreams), it turned out he'd missed my co-infections. In truth I was dealing with untreated Babesia and Bartonella which he completely missed. I've gotten much better since I changed doctors and I've found proper treatment.
To add another data point my aunt was also seeing this neurologist. In her case she was dealing with untreated Babesia and she's made dramatic gains with the Mepron her conventional LLMD prescribed her.
Posted by Bugg (Member # 8095) on :
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....
Posted by jackie51 (Member # 14233) on :
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.
Posted by t9im (Member # 25489) on :
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.
Posted by Tammy N. (Member # 26835) on :
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.
Posted by nefferdun (Member # 20157) on :
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. . . .
Posted by joebar (Member # 19680) on :
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.
Posted by joebar (Member # 19680) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
PROGRESS & SUCCESS STORIES -
Posted by MattH (Member # 30846) on :
Tammy,
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
Posted by lymetwister (Member # 19590) on :
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.
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.
Posted by 2young2dieMom (Member # 25434) on :
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.