Going down the Lyme trail

[Stephanie2]

So, I just requested the igenex kit and I am going to have the blood drawn in the next couple weeks (on myself). I wanted to give a description of my symptoms to see what you moms think. Some of you have already told me to do it!!

 

My first bout with anxiety was back when I was in college, about 21. Went to the ER one night feeling like my throat was closing up, and from time to time my chest would get tight (still does). I guess that would have been considered a panic attack, but I didn't feel panicked! Subconsciously, I guess?

 

I managed my anxiety with lots of exercise all through my 20's. I also had some depression but it was only the couple days right before my period. I would also be aggitated at that time and sometimes take it out on my husband.

 

I was diagnosed with asthma at the age of 28, but since then have lost this issue due to cutting back on dairy and other interventions.

 

Here's where things escalated. When I was about 6 months along with my first child, I developed SEVERE depression, mood swings, I would cry so hard that you would think that someone close to me just died. To my own credit, I was on very strict bedrest (preterm contractions) which was against my type A nature. BUT, my severe meltdowns felt very out of proportion to how I was feeling. I felt like I was losing it!! I went on to have a very long, traumatic labor and delivery with no pain meds (not by choice). When I went to my obgyn a few weeks later complaining of post-partum depression, he said that he felt that I had PTSD from the "horrific delivery" - his words! He said I will get over it and soon feel better. I did eventually get better (maybe 6 months after delivery).

 

About 12 months after this delivery I suffered from SEVERE IBD! Severe stomach pain, and the only thing they could find on colonoscopy was that my left descending colon was "twisted" - I attributed this to c-section complications. This magically disappeared about a year later...???

 

 

Fastforward to my son's first pandas exacerbation at 22 months of age (of course didn't get the dx until MUCH later), 6 months later I went into a SEVERE depression which I attributed to my child falling apart. Went on Lexapro.

 

Then came the next event, a miscarriage. A year later I got pregnant again and had a horrible pregnancy - hyperemesis until week 29!, malnutrition, anemia, dehydration, strict bedrest for 3.5 months, preterm labor, reflux, you name it. This delivery was much better, but son went right into NICU.

 

This child came out of the womb with very low muscle tone, torticollis, reflux without vomitting (? or was it early onset pandas?), distended belly, enlarged head, reaction to DTaP (lost all ability to verbalize - zero babbling, zero attempts to communicate), later went on to suspect autism due to no babbling, no attempt to socialize, behind on all milestones. Went on to be diagnosed with Chiari Malformation, mitochondrial dysfunction, methylation issues, inflammatory bowel. Had first definitive pandas exacerbation at the age of 15 months.

 

I have since begun to see a functional medicine doctor who did labs which showed: anemia, low magnesium, insulin resistance/prediabetes (no diabetes in the family, I am 36 and not overweight??), mild thyroid problem, low testosterone, low DHEA, adrenal insufficiency and gut dysbiosis. After addressing all of this, I have been able to go off lexapro (with the help of 5HTP and SAM-E) but I'm not sure I feel as mentally well as I could be.

 

I just have to wonder if lyme is bringing us all down! Or something! Or sometimes I just wonder if each one of these events is just snowballing together and maybe I don't feel great b/c of what is going on around me!

 

(editing this to add one more detail, wondering what ppl think about this: a couple years before my mom got pregnant with me, she became very ill for a period of 6 months and it progressed to the point where she was too weak to hold a pencil and she could hardly walk. She was in and out of the hospital, no one had any answers, she was given meds, etc. Out of sheer desperation she one day decided to take some left over antibiotics that my dad had in the medicine cabinet. She said she was up and walking around within 2 days and she has been ok ever since besides some anxiety and thyroid issues)

 

Feedback would be great...do you think I have lyme? Is this worth investigating?

Edited December 2, 2010 by Stephanie2

[MichaelTampa]

I'm glad you're looking to get this checked. If I haven't already said so, yes, I do see a lot of clues pointing in that direction for you.

 

I noticed a few similaries in our stories that seem interesting. I have had intermittent bouts of mild depression, here and there, in the 20's and 30's. In 2006, I got PTSD from a near-drowning, and that began a big huge spiral downward of my health, including severe depression and anxiety and chronic fatigue. Because it all seemed to be caused by the PTSD event, we all tried to treat it as a psychological issue, with therapy (that was necessary and very helpful but not curative) and SSRI's (that caused horrific bipolar reaction, so that was stopped). Of course, it was lyme, and we eventually got to that, but I was diagnosed with Tourette's first. During that period, I read that it is a common problem for those with Tourette's, people don't take the new symptoms seriously because the symptoms frequently pop up after a traumatic life event, and so the life event and the perons's reaction to it is seen as the cause, and nobody looks further for an underlying cause.

 

There is a very excellent book by Martin Pall, "Explaining Unexplained Illness", and he talks a lot about methylation and its key role in things, as he talks mainly about the nitric oxide cycle. He actually proposes an over-the-top nitric oxide cycle as a new category of disease (the current accepted list has, I think 9 categories, one of which is "infections"), and that may be true or not, but it is interesting reading about how PTSD causes very similar chemical responses as those seen in people with chronic fatigue, and it is enlightening to realize how talk therapy and SSRI's are just not going to get you anywhere until you address the nitric oxide cycle. In the book he lists many supplements that can be very helpful in these situations. You will find quite a lot of overlap if you compare them with what people like Burrascano (from ILADS) or Buhner (the lyme herb guy) recommend for lyme. I believe there is some discussion in there on oxygen therapy as well, but he doesn't give it as much credit as others do for dealing with an overactive nitric oxide cycle--it helps a lot! I keep thinking I'll take the time someday to list the treatments I've had over the years and highlight the ones I think that have been really great, and I never get to it, so I'll say now, for me, oxygen therapy is on that short elite list.

 

With lyme disease, low magnesium, insulin resistance/prediabetes, mild thyroid problem, low testosterone, low DHEA, adrenal insufficiency and gut dysbiosis are common, and I had them all as well, and still have most of them. The insulin resistance was the biggest puzzle, as they kept wanting to blame diet but it was just not the case, and I would take it as a big clue in your case as well, whether it's lyme or something else, there's a reason that is happening and it'll be good to track that down eventually. That has finally gone to normal range for me with lyme treatment which is still ongoing. Yes, the 5HTP and SAMe have been very good for me as well, although I haven't needed them for a while, since I have had a lot of types of treatments.

 

Congratulations on making it through all that!

[sf_mom]

I am really glad you are investigating further as many of things listed seem to indicate lyme could be a problem. Again, a good LLMD would help you get to the bottom of whatever 'it is' for the entire family - Lyme of not.

 

-Wendy

[Stephanie2]

I am really glad you are investigating further as many of things listed seem to indicate lyme could be a problem. Again, a good LLMD would help you get to the bottom of whatever 'it is' for the entire family - Lyme of not.

 

-Wendy

 

So, Wendy, if I go see a good LLMD and he/she looks at my igenex report and says I don't have lyme, what other things would he investigate? Remember I have an expensive biomedical expert on board!! Is there something a lyme doc can do that he can't? Thanks, I value your input...

[Suzan]

Hi Stephanie. I am glad you are looking into lyme too. Some of your history sounds like mine and what Michael was saying about PTSD triggering the illness is interesting to me too as I had PTSD after my pregnancy when my son died in 2001 and this marked my 2nd flare (first was in 1996 where I would cry and cry over very little nothing events and many other symptoms that lead to my hashimoto thyroiditis diagnosis). Then more recently, I went through a very traumatic experience where I lived in a state of constant adrenalin for 2 months. It was less than 1 month after that event resolved when I was diagnosed with parsonage turner syndrome and started heading downhill fast. In between those two events, I discovered low adrenals, low magnesium, low vitamin D, low ferritin, low neurotransmitters, insulin resistance (that was actualy before 2001).

 

Anyway, I'm just rambling but wanted to say that you sound very suspect of lyme to me. Where ever this path leads you, it is taking you in a new direction that will help you find more answers for you and your family.

 

Susan

[sf_mom]

They are the best of the best when it comes to understanding chronic bacterial infections and how to properly eradicate. They have a ton knowledge on how to test properly for those difficult to find bacteria's. They know clinical symptoms associated with specific strains of bacteria when there are no positive tests results. They understand the herxing relationship with each bacteria to determine proper diagnoses.

 

For example: My babesia results are currently negative but I have all the clinical symptoms to suspect I have the infection. There are 17 known strains of Babesia and they are only currently able to test for two strains... Sometimes clinic diagnoses with treatment response is necessary.

 

Anyway, I could go on....

Edited December 3, 2010 by SF Mom

[nojo]

Hi Stephanie. Your story sounds alot like mine. I had terrible pregnancies, I threw up both times until the day of my emergency c-sections. I was hospitalized repeatedly for dehydration from the vomiting. I was put on bedrest in the hospital at 28 weeks with my first pregnancy. I had always been a happy person, and I was crippled by depression. I ended up seeing a counselor to deal with the trauma of the first delivery, my daughter was only 3 pounds 15 oz, and I was too sick to even see her in the NICU for 2 days. I had my second daughter 14 months later, and since her birth almost 8 years ago, I have not been able to get off anti-depressants.

 

My older daughter has PANDAS,an immune deficiency and lyme. She has been hospitalized numerous times for various illnesses. Over the last few years I felt that the stress of a chronically ill child was taking it's toll, but who has time to worry about yourself when there are bigger issues to be dealt with. I finally went to the doctor to deal with the chronic migraines, and IBS. I was treating all of the symptoms, but nothing was helping. It was only over the last 2 years that the bathroom issues became truly unmanageable. I saw an article saying that IBS is often mis-diagnosed Celiac. I didn't think that was my problem, but I had learned about alot of auto-immune problems in our family while trying to figure out how to help my daughter. I requested the test to rule it out, the diet was too hard for me to implement without a reason. I never heard back so I assumed it was negative. Long story short, the results were never sent to my doctor, and I was positive.

 

I started the diet, and within 3 days I was changed. The biggest difference was that the brain fog was gone. My husband looked in my eyes and commented that they were clear even he could see a marked difference.. My outgoing, optimistic personality is back. Slowly, I am coming off all of the medications starting with the anti-seizure for migraine. My next step is to get off the anti-depressants slowly since I've been on them so long.

 

I would urge you to consider a Celiac test. Most of my symptoms for years were more neurological, brain fog, depression, vision changes, migraine... the typical bathroom issue didn't appear until more recently. As you know auto-immune issues tend to run in families. I truly did the test only because of the magazine article, and because of the auto-immune issues in our family (although no one else has tested positive for Celiac in my family.) I feel like I have been underwater for the last few years, and the water is gone. Also for Celiac, you need the genes, and you need gluten, but you need a trigger. For me, I am certain the trigger was the pregnancies. I was very sick when pregnant, and I have never been the same since. I think of all the times I tried to eat crackers with the nausea, and probably was making things even worse.

 

Good Luck. I don't usually share this much about myself, but when I read your post it really stood out to me. I saw alot of my own issues in it, I hope this is helpful to you.

 

Noelle

[Stephanie2]

I have been told by several docs that maybe my youngest child has celiac and that is on my list of things to check but I never thought about having myself checked. You make a good point. Not to mention, I think that most of my kids' problems came from me, so usually when something tremendously helps them, it turns out to tremendously help me. I am starting to have the kids' DAN doc run more labs on me...

 

Thanks for the story and the tip. I am glad to hear you are doing better.

Hi Stephanie. Your story sounds alot like mine. I had terrible pregnancies, I threw up both times until the day of my emergency c-sections. I was hospitalized repeatedly for dehydration from the vomiting. I was put on bedrest in the hospital at 28 weeks with my first pregnancy. I had always been a happy person, and I was crippled by depression. I ended up seeing a counselor to deal with the trauma of the first delivery, my daughter was only 3 pounds 15 oz, and I was too sick to even see her in the NICU for 2 days. I had my second daughter 14 months later, and since her birth almost 8 years ago, I have not been able to get off anti-depressants.

 

My older daughter has PANDAS,an immune deficiency and lyme. She has been hospitalized numerous times for various illnesses. Over the last few years I felt that the stress of a chronically ill child was taking it's toll, but who has time to worry about yourself when there are bigger issues to be dealt with. I finally went to the doctor to deal with the chronic migraines, and IBS. I was treating all of the symptoms, but nothing was helping. It was only over the last 2 years that the bathroom issues became truly unmanageable. I saw an article saying that IBS is often mis-diagnosed Celiac. I didn't think that was my problem, but I had learned about alot of auto-immune problems in our family while trying to figure out how to help my daughter. I requested the test to rule it out, the diet was too hard for me to implement without a reason. I never heard back so I assumed it was negative. Long story short, the results were never sent to my doctor, and I was positive.

 

I started the diet, and within 3 days I was changed. The biggest difference was that the brain fog was gone. My husband looked in my eyes and commented that they were clear even he could see a marked difference.. My outgoing, optimistic personality is back. Slowly, I am coming off all of the medications starting with the anti-seizure for migraine. My next step is to get off the anti-depressants slowly since I've been on them so long.

 

I would urge you to consider a Celiac test. Most of my symptoms for years were more neurological, brain fog, depression, vision changes, migraine... the typical bathroom issue didn't appear until more recently. As you know auto-immune issues tend to run in families. I truly did the test only because of the magazine article, and because of the auto-immune issues in our family (although no one else has tested positive for Celiac in my family.) I feel like I have been underwater for the last few years, and the water is gone. Also for Celiac, you need the genes, and you need gluten, but you need a trigger. For me, I am certain the trigger was the pregnancies. I was very sick when pregnant, and I have never been the same since. I think of all the times I tried to eat crackers with the nausea, and probably was making things even worse.

 

Good Luck. I don't usually share this much about myself, but when I read your post it really stood out to me. I saw alot of my own issues in it, I hope this is helpful to you.

 

Noelle

[nojo]

Good Luck Stephanie. I first did a blood test, which was positive. I was scheduled for a colonoscopy b/c of my issues. When the blood test was positive, luckily I had asked about the blood work first. For a definitive diagnosis, they had to do an upper endoscopy to biopsy the small intestine. My biopsy was ok, but the doctor said he almost didn't send it out because I looked so bad. The whole gluten issue runs on a scale from intolerance to celiac. Even though the biopsy was ok, he considers me celiac, and thinks he didn't pick a good enough spot to send for the labs since damage can be not uniform.

 

When I looked over your post after reposting, there were a few other things I didn't comment on that I had also. I too was diagnosed with asthma for the first time around 28 or 29. I've never had reflux until the pregnancies, but that has continued and even gotten worse over the last few years (to the point that prevacid was no longer working). This too is significantly better. It might be worth a trial of the gluten free diet for yourself, I could tell very quickly. You do have to be on gluten for accurate test results though. While I am not glad of the diagnosis, I am so relieved to feel better. Hopefully I will be able to be off all meds. I finally feel like me again.

[Stephanie2]

I would guess that I am more at the intolerance end (many people are) and maybe my 2yo is full celiac. I say that b/c some of the transient GI stuff I had revolving around my pregnancies and post-partum period are now fully resolved without meds. I never get reflux or stomach aches or bowel issues (lucky me, I know how awful that can be).

 

Here's a question for you, though. Do you think that your lyme status is what created your celiac status?

Edited December 3, 2010 by Stephanie2

[sf_mom]

FYI: I hate to say all roads lead back to Lyme. BUT, most individuals with Lyme will have a gluten/casein intolerance with a strong link to Celiac's and when checking for Celiac's you should be checking for chronic underlying infection of bacteria/parasites/yeast/fungus, etc. Two of my children are off the charts for Dairy/Casein/Egg/Cheese sensitivities. The new diet that has eliminated these food has helped but our Dr. feels it is the 'bacteria/parasites' that has broken down the mucous lining wall creating the 'leaky gut syndrom' and has prescribed ketotifen along with IgG powder to repair intestinal wall.

 

I posted about this the other day. http://www.latitudes.org/forums/index.php?showtopic=11095&pid=93742&start=&st=#entry93742

[Stephanie2]

Very interesting...we were prescribed quercetin for the same effect: histimine/gut repair. We were also prescribed IgG but i have yet to start it. Sounds like your doc is very on top of things. Funny how the pandas tx's go against the leaky gut repair. That's why we switched to OLE.

 

 

FYI: I hate to say all roads lead back to Lyme. BUT, most individuals with Lyme will have a gluten/casein intolerance with a strong link to Celiac's and when checking for Celiac's you should be checking for chronic underlying infection of bacteria/parasites/yeast/fungus, etc. Two of my children are off the charts for Dairy/Casein/Egg/Cheese sensitivities. The new diet that has eliminated these food has helped but our Dr. feels it is the 'bacteria/parasites' that has broken down the mucous lining wall creating the 'leaky gut syndrom' and has prescribed ketotifen along with IgG powder to repair intestinal wall.

 

I posted about this the other day. http://www.latitudes.org/forums/index.php?showtopic=11095&pid=93742&start=&st=#entry93742

[Suzan]

FYI: I hate to say all roads lead back to Lyme. BUT, most individuals with Lyme will have a gluten/casein intolerance with a strong link to Celiac's and when checking for Celiac's you should be checking for chronic underlying infection of bacteria/parasites/yeast/fungus, etc. Two of my children are off the charts for Dairy/Casein/Egg/Cheese sensitivities.

 

Us too... various food intolerances, gluten, dairy and other things, allergies, I can't tell you how many Ah Ha moments I had when reviewing my past when I found out I had lyme.

 

Susan

[lyme_mom]

The sudden onset of asthma later in life can be babesia. I couldn't breathe for a week and was told by the dr I have asthma. I knew he was wrong and it went away. I was 44 years kd and never had had any breathing problems before! Several years later I was treated for babesia and realized that the breathing problem was likely babesia. U can have babesia w or without symptoms btw. I agree w Wendy that Lyme can be the root of all evil and I would look for other causes of these symptoms. Eating gf is really healthy but Lyme can cause the hyper response to gluten. Healing the gut is important for anyone who is sick.

I have a relative whose depression was blamed on her divorce but she really has lyme disease. Her psychiatrists have no understanding of Lyme and she must go out of state for her Lyme treatment. The shrinks never asked her about her physical symptoms: night sweats, leg pain, vision problems, sound and light sensitivity , etc. She had 18 lyme symptoms in all!!! No they just treat the psychological symptoms with no curiosity about what causes it. It's very frustrating.