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Trying to find the cause

Jul 08, 2008 - 4 comments
Tags:

spasms

,

lyme

,

join pain

,

sore throat

,

chills

,

burning

,

fatigue

,

on and off

,

Headache



My general health was normal. I have had insomnia for years, suffered headaches and digestive problems such as constipation, bloating and gases. Those little things that bother you, but you can still do your normal life.

At the end of the Journal, there is a summary of Symptoms, Test done and their result, and Possible causes of this “disease”

In 04/07 we moved to the apartments where all this started (in LA, California).  

By the end of 08/07 or beginning of 09/07, we got bitten by some kind of insects; we did not know what kind. I was very afraid and started using “the woods off” repellent w/DEET “to protect us”.  In 10/07, my little one complained of pain on her ankle; I thought it was her shoes (maybe poor support for her- she’s so active). Then we started having chills and few days later body SPASMS.  By that time, the weather was not good and we got the flu. We got body aches, headaches, and chills (I was 39 in good health conditions, and this was the first time I felt chills – just the lower extremities).

In 11/03/07, I started having pain that spreads all over my back, and behind my knee (the pain was on and off); I also had burning sensation on my arms and back.

On 11/06/07, I was tested for Lyme Western Blot Results = 0.67  (Negative results)
On 11/10/07, my little one complained of her ankle again and her back (she also described it as a on and off pain that spreads all over her middle and upper back). Two days later my older girl complained of pain behind her knee and had chills (same as me).

By the time (11/15/07), I had collected three examples of two different insects (two of them were alive red, tinny ones and the other one was bigger and brownish-dead); so I took them to the Pediatrician for ID, they were sent to the lab; but they did not do a good job, they did not identify them, they just performed a Lyme disease DNA, Tick test. – Negative (it looks like they just analyzed one of them).  Despite my kids’ symptoms, pediatrician won’t give them anything, but Tylenol.  She recommended me to find out what I have first, and then check the kids. (All 11/07-12/07 our heads –scalp- were itchy – probably this condition was due to the weather)

In 12/07, I got worse with the back pain, headaches, neck pain, stiff throat muscles, ear pain, pain in the long bones of my extremities –legs and arms- dizziness, nauseas, and hot sensations (not fever). Therefore, I went back to primary doctor and got referred to a neurologist. I had CT Scan (brain) and a MRI (cervical spine), lab test, showing everything normal.  He gave me Verapamil for the headaches, but did not work at all.

By the end of 02/08, the symptoms were even worse, my whole body was shaking. I had very difficult time to get up in the morning, which was very, very unusual for me.  I went back to the neurologist. Since he did not find anything wrong, he prescribed me Gabapentin (Neurotin, 300mg) to control the symptoms (in effect improved my spasms, headaches, ear pain and neck pain, but not the body aches and join pain. This pain goes on and off, here and there, all over the body), and he referred me to a rheumatologist.

I started seeing in the doctors’ faces the disbelieve look.  Then I decided to video tape my kids’ spasms to show them what I was talking about

While waiting for the rheumatologist appointment, I had had a terrible sore throat that lasted for over a month. (by that time two coworkers had contagious throat infection and I knew I did not have it, but anyways I went to the doctor to have it check). Every thing was fine, no infection was found, but my throat bothered me to talk or swallow.  By the time I went to the rheumatologist (04/08) that pain had decreased, and I had sensibility in the thyroid region. She was very patient and did a complete physical, emotional and mental evaluation.  There, I found out that my C-Spine MRI shows a mild multilevel DDD.  (I do not know if this is a big thing or not and how it will affect me in the future)

At the beginning of May, I felt very dizzy and nauseous, that I had to go to immediate care. I was given Meclizine 12.5 mg.  I took it for couple of days.  I do not want to depend on medicine to feel better.  I want to find out what is wrong with me and my kids.

I had always mentioned the insects’ bites and the use of DEET to the doctors because I really think all this is related.  Since the bites and the use of the repellent, the three of us have body aches, and muscle SPASMS.

I brought my video tape with me to my second visit to the rheumatologist (05/07/08) and explained her that they are visible at rest and they last seconds, but the frequency could be from less that a minute to up to 4 min. The rheumatologist thinks the spasms are fasciculations that may be due to neurological problems and asked me to go back to the neurologist, which I did not do – He did not find anything wrong with me and he won’t.)

This visit was to discuss the lab results, I was glad most of the results were normal (ANA 12 Plus Profile, Anti-RO AB, CRP Total, ESR, CK26, A-CMP, Magnesium, thyroid, CBC) all normal with the exception of (L) Platelets, (H) Lymphocytes and (L) Granulocytes.  She said that these count is reversed and due to these abnormalities, she recommended me to see a hematologist.  

This was the first time I saw a real concern for our health.

My two kids complained of constant sore throat since 10/07 and they also have the same symptoms as me, but mild: back pain, stomach ache, headaches, pain in the long bones and feet, and body spasms- which are not visible when you control your muscles; it is visible at rest/night time.  

My older one started having problems concentrating and her grades went down.  (At this point I had the same problem at work.  This problem is not completely gone but the worse time lasted for about 2 months – between 01/08-02/08).  Of my two kids, my older one -10yrd-old- is the one who had more body pains, but they only last 2-4 days. I took them to the pediatrician again, and suggested to take them to an infectious disease doctor (their appointment is in 07/08).  When my kids complain of any discomfort I try not to alarm them – .  Even when I know those symptoms are similar to mine. I tried to disregard them by telling them that they are so active and they are sore and tired; and they just need to rest.  Lately I had told them I will take them to the doctor to have them checked.

On 05/10/08, My older one had headaches, pain in her long bones (arms and legs) and on her foot. If  I had not have all those symptoms,  I would say her complains are just normal for her age.  But I know that this is not a coincidence, there is something wrong.

My arms pain got worse (especially the bone from the shoulder to the elbow)
On 05/08, I was coughing really badly, my chest hurt, so I went to primary doctor.  She gave me some antibiotics and coughing medicine, and order more test: Iron, TIBC, Ferritin, Folate, Vitamin B12 and Lyme test again. She gave me the referral to the hematologist, few days later the chest pain decreased, but did not go away (until now).

By the second week of June 2008, my two kids complained of chest pain and sore throat (no cough or allergies). At some point we had some kind of sores in the gums, but they went away within a week. The kids have some kind of white little spots (3-5) on their arms. In 06/29/07 my little one complained of shoulder pain and sore throat.

On 06/30/08, I saw the hematologist. He ordered more blood test. And said the Lymphocytes (H) and Granulocytes (L) may be due to an infection, cancer, leukemia or cause not found.

I explained the situation of the insect’s bites and the common symptoms the three of us have and he thinks there is a probability of infection that is causing the imbalance; therefore he referred me to an infectious disease specialist.

I saw the infectious disease specialist on 06/30/08, he ordered a chest X-ray (to rule out TB) and many other lab test :   HTLV I & II Antibodies,  Trichinella Titer, Panelsi – Comp Metab Panel (CCMPR), Individual  Tests:  Coool Titer to Kern (COCS), Complete Blood Ct (CBD) Diff., CPK CCK, Microplasm IgG & IgM, T Cell Panel (THS), Toxoplasm Ab IgG/IgM (Tox),
Sedrate Measles IgG & IgM Antibodies,  Quantiferon Gold.  He said the chances of having any of these diseases are very low, but he wants to rule them out. I need to wait 10 days for results.

In 07/03-05/08, both of my kids have pain in the long bones of their legs (inside part).  The little one also complained of stiff neck and shoulder pain and also she felt hot for those two days.
The older one complained of pain on her big toe. (this is stuped. These little things that could be nothing are the ones that concern me because the 3 of us are having them.  I even had pain in my foot and a “cramp” in the toe beside the big toe a week ago. I thought it may be due as a result of a previous surgery I had, but days later the same pain was in the other foot.
On 07/07/08, my older one complain of sore throat and said that she has pain on her neck -pointing her thyroid region and telling that her upper chest hurts when breaths. She was having pain in her chest (where the stomach starts) that spreads to her back. And pain at the sides of her ribs and the pelvic area (It’s exactly the same symptoms I have had, but she describe it very simple and straight forward.  All this time I’m being hesitating about my own complains, thinking or whishing to have something different from them and at the same time afraid that they will show some of my symptoms – I’m very desperate.  I need to find an answer faster. I do not want them to get worse)  

Summary of symptoms (including not significant ones – I tried to arrange them by appearance):

pain on ankle and feet (including the toes)
chills (lower extremities for me; whole body for them)
body SPASMS - fasciculations (any time for me. For them they are visible at rest and they last seconds, but the frequency could be from less that a minute to up to 4 min.)
Itchy on the heads –scalp- (probably this condition was due to the weather)
we got the flu
We got body aches
headaches
pain that spreads all over the back
pain on the back of knee
join pain
general bone pains (specially long bones and pain on the bones close to the joins)
burning sensation on my arms and back (lately on my joins). (for my little one all over her body)
neck pain
stiff throat muscles
ear pain
pain in the long bones of extremities –legs and arms-  
dizziness, nauseas,
shakiness
fatigue
pain that goes on and off, here and there, all over the body.
Concentration problems
Sore gums
White little spots on the skin -arm – just the kids
Stomach aches (some diarrhea), and pain in pelvic area
coughing
vision got worse (for my older one and myself)
fast heart beats and pain around the heart (for them)
They complain of being hot and sweating a lot. I was always cold (now I feel less cold than before. But I have burning sensations)

Abnormal lab results (for myself):

(L) Platelets, (H) Lymphocytes and (L) Granulocytes

Lab test done (for myself):

2 Lyme Western Blot Results for first one =0.67; for second one= 0.15  (Negative results)
ESR – Results = 14 Normal
Rheumatoid Factor Scm Results = Negative
Lyme disease DNA, Tick test. – Negative (it is important to mention that the ticks found may not be the ones we were bitten by - and that it looks like the lab just analyzed one of them).
CT Scan (brain) - normal
MRI (cervical spine) - Results C-Spine MRI shows a mild multilevel DDD.
Iron Results = 77 Normal
TIBC Results = 406 Normal
Ferritin Results = 8 Low
Folate Results = 22.23 Normal
Vitamin B12 Results =  476 Normal
White blood count Results = 8.2 Normal
Red blood count Results = 4.1 Normal
Hemoglobin Results = 12.2 Normal
Platelet Count Results = 100  Low
Eosinophils % Results = 3.5  High

ANA 12 Plus Profile, Anti-RO AB, CRP Total, ESR, CK26,
A-CMP ( Sodium, Potassium, Chloride, CO2, Glucose, Urea Nitrogen, Creatinine, Calcium, ALT – SGPT-, AST, Total Biliribin, Total Protein, Albumin, Globulin, A/G Ratio, ALK Phos – All results for A-CMP were within normal ranges)
Magnesium, thyroid, CBC - all normal with the exception of (L) Platelets, (H) Lymphocytes and (L) Granulocytes.

Lab test done (for myself) – results:

chest X-ray - Normal
HTLV I & II Antibodies - Negative,  
Trichinella Titer - No antibodies detected,
Panelsi – Comp Metab Panel (CCMPR) - within normal ranges,
Individual  Tests:  Coool Titer to Kern (COCS)-Coccidiodomycosis - Antibodies not detected,  
Complete Blood Ct (CBD) Diff.- Within normal ranges,
CPK CCK - Normal range,
Microplasm IgG (High) ? ? ? ? * * * * * ?????  & IgM - within the range (done by Mayo Medical Lab),
T Cell Panel (THS)  - within normal ranges,
Toxoplasm Ab IgG/IgM (Tox) - Negative,
Sedrate - within normal rate
Measles IgG - Positive (current or past exposure) & IgM Antibodies - Negative,  
Quantiferon Gold.  

Doctors’ suspicions:

Bone marrow problems: An infection, cancer, or leukemia; TB, muscle disease. (Not sure what else.)

My suspicions (the three of us have same symptoms that started almost at the same time) :

Infection caused by the insects’ bites
Toxic reaction - Poisoning (that affects the neurological system, bones and muscles)
Allergy (a really bad one)

Things I’m aware we used or were used that I think could affected us:

insects’ bites (ticks)
use of DEET  “The Woods Off”
use of Raid (for Ant & Roach)
Fumigation (for insects)
Household chemicals
Medicine
New paint
New foam mattress
Food (that may cause allergic reactions)

Things that I think could affect us :

Mercury (fish)
Mold
Heavy Metals
Carbone Dioxide (from car emitions)

Someone recommended me to be tested for ( I do not know if any test done on me is one of these):
Babesia or WA 1, Bartonella, Ehrlichia

What can I do for my kids or ask the infectious disease doctor to do for them? – Should I have them do those test in which I show abnormal results only?


08/03/08 Update:
On 07/08 the Infectious disease doctor saw the kids, and Lyme was ruled out. Routine blood test were done with normal results.

I am feeling hopeless with all these symptoms that come and go. Since 10/07 I had experienced back and chest pain, headaches, neck pain, stiff throat, ear pain, bone (includes the feet), joint and muscle pain, dizziness, nauseas, and hot sensations (not fever).  My whole body is shaking if I am not in Gabapentin. I am having stomachache and occasionally mild diarrhea, pain in long bones (arms and legs).

I have seen 4 specialists (neurologist, rheumatologist, hematologist, and an infectious disease doctor) and I had CT Scan (brain) and a MRI for the Cervical spine (C-Spine MRI) that shows a mild multilevel DDD and unlimited lab tests showing everything normal except for (H) Lymphocytes and (L) Granulocytes (it may be due to an infection, cancer, leukemia), but which results went back to normal on 06/30/08.  (H) Mycoplasma IGG

My two kids have or had some of the symptoms too, but mild.

The older one complained of pain on her toes and have had mild diarrhea several days. The little one complains of stomach ache.





Comments
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147426 tn?1317269232
by Quixotic1, Jul 09, 2008
Kitty, I am so sorry to hear of what you and your girls are going through.  Please remember that, although I was a pediatrician, I have been out of practice for 7 years.  Your analysis and listing of all the things that have gone on seems very thorough.  My gut feeling is that you all have contracted an infection and seeing an Infectious Disease specialist would be my very first thought.  

The one you saw has run a very extensive set of tests and demonstrates that he is taking you very seriously.  LA is very urban and not a hotbed of tickborne illnesses, but I agree that those should be ruled out in you and in the children.  I would ask the ID guy to test for those if his first run does not produce any results.

With regard to how much do you put the children through, as a pediatrician I recommend a full workup.  They know they aren't well and you are not going to plant this idea in their heads by pursuing these symptoms.  Teaching kids to be "hypochondriacs" is a long-term process of attitude and not a matter of attention for real symptoms.

As to what is testing is done on them, I believe that children should be seen by child specialists.  I do not think they should be tested only for the things you are positive on.  You have a medical mystery of sorts going on and you have three people who could give the clues.  Each person does not always give all the signs, but since your illnesses are similar and began around the same time what one person tests positive for is very likely what all three have.

There are several centers of pediatric excellence in the LA area.  I don't know what part of LA you are in, but Children's Hospital of LA in Hollywood, and UCLA, in West LA, both have highly respected academic pediatric departments.  In Orange County there is CHOC, Children's Hospital of Orange Co.  Through the 70's and 80's UCLA had one of the world's finest pediatric ID specialists, Dr. James Cherry.  He apparently is still in practice (?? he would be in his 70's) but I would bet the department is still great.  Also, involving different doctors for the kids than you have allows another mind to come up with ideas.

While this is going on, I would have the LA Public Health Department come out and analyze the apartment for environmental hazards.  Tell them theat all the members of the houshold have become chronically ill since you moved in.  They should do a thorough check for toxins, pests, heavy metals, and drugs.

If the neuro thinks you are wacko you need a different neurologist. Period.  This is a problem we come up against often.

This is all I can think of right now.  I hope it has helped.

Quix

Avatar universal
by mercyone, Jul 09, 2008
I read this with a lot of interest even though some of the test results I do not understand. But I wanted to mention, that people many times think of substances they ingest or touch or put on their body, like lotions, but sometimes they forget that the wind carries toxic elements and perhaps a nieghbor is using a chemical on their yard or spraying that might be blowing into your house/home/ or AC unit. You might consider what you are downwind from - since the children too are having difficulty.

I use a special filter in my AC that blocks most pollen/toxins etc......

I hope you find out shortly what is going on, for not only your sake but for the sake of your children.

Mercy

Avatar universal
by kitty_female, Jul 10, 2008
Hi Quix,

Hope you are feeling well,

I did not mention it, but I as soon as I found an opportunity I moved out (that was the end of 11/07). I left behind the bedroom’s furniture, since I did not want to bring any bugs. I washed all the clothes with hot water before taking any to my new place.
Since this happen last year I do not know if I can still report it to the Health department. I need to find out. Also I been thinking to go back there and ask the neighbors if they have any kind of symptoms, but I find it very inappropriate (I do not know them).

When you referred to toxins, pests, heavy metals and drugs – It just pop up on my mind that in the basement of the building were black spots like the ones at La Brea tar pits in LA. (I’m sure the health department knows that.) Could this affect us? If that’s the case there must be a lot of people sick not just there, also around the La Brea Tar pits museum. We lived around that area for three years and never presented any symptoms until almost 6 months after we moved to those apartments.  The area was not good and there may be many drug addicts around the area, but I do not see how this could affect us.

Do you think I have to mention this to the doctors?

Thank you so much for providing me a reference at UCLA. Before I got referred to my infectious disease doctor, I called my health plan to see which doctor can see the three of us.  Unfortunately, my plan does not have a pediatric specialist and my specialist does not see kids.   I found out about the pediatric unit that UCLA has and I made an appointment with them a month ago, but I was hesitating to take them there; thinking that doctors there may be students without experience.  I will call them tomorrow to see if Dr. Cherry can see them. Their appointment is next week.

Another question: As a doctor would you appreciate if I bring the information I wrote in my journal or you think they are so busy to read it? (My English skills are not that good and my memory either.)

Thank you.  I will keep posting.

kitty



Avatar universal
by busymom3CA, Feb 19, 2012
Hi Kitty,
It really sounds to me like you have Lyme disease and maybe a tick co-infection like Babesia or Bartenella.  Generic regular labs have something like an 80 % false negative rate.  
I would get tested at Igenex lab.

Igenex test
When testing through Igenex it is imperative to be tested for co-infections as well as Lyme. The following blood tests should be run: 

Lyme Western Blot IgG & IgM (check both test #'s 188,189)
Babesiosis - B.microti IgG & IgM Antibody (test #200)
B.duncani IgG & IgM (WA-1 - West coast testing) (test #720)
Chafeensis (HME) (test #203)
Anaplasma Phagocytophila (HGE) (test #206)
Bartonella - B. henselae IgG & Igm Antibiody (test #285)

I know this sounds backward but I would test the healthiest of you or your children that have symptoms first.  The sicker you are the more suppressed your immune response will be and the less will show up.  You could even test negative at Igenex and still have Lyme so go see a LLMD, Lyme literate MD as there are other additional tests and ways to determin what is wrong.

Your family might also have additional problems de-toxing from mold or chemicals such as deet or tar? The tar like black stuff could have been mold or a petroleum trpe Chemical.   Research the Shoemaker protocol and drugs such as Welchol and Cholestyramine.  However most Lyme doctors are aware and can help with getting rid of toxins.
To talk about Lyme go to  LymeInfo.net or contact :
Judith Weeg, President (515) 432-3628
LDUC Office: (800) 311-7518
Fax Line: (888) 746-3810
1-5 central time 515-432-3628 central time
Best Wishes and Good Luck getting healthy.

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