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battle with lyme

Jun 08, 2011 - 0 comments

Mar 23, 2011
This will be a shocker for everyone.
I stopped my I.V. treatment on the 21st. I told the doctor it wasn't helping very much. I was having a very rough time these past few weeks prior, during and after my period. He tried to tell me that It was likely herxing. I told him that it could be but why am I feeling worse then last month. He said this happens. I told him I need to look into other things as possibilities for my constant abdominal pain. I told him I was going to look into low progesterone. I asked if I could be put on diflucan to see if this helps with my abdominal pain and he agreed. He also had to prescribe a new prescription of diflucan for my husband because his fungal rash has come back.

Today the 23rd my husband went to see a new lyme specialist. He is a certified ILADS doctor and informed me that our last doctor was not.
He evaluated my husband and went over his test results. He said that MDL labs are not very good for lyme testing and he only uses Igenex.
Do you hear everyone. IGENEX labs are the best.
He also told my husband that he feels he suffers with coinfections, bartenella and babesia. These must be treated first and testing for them is less accurate then testing for lyme. He usually goes by your symptoms for treating coinfections. The doctor also suspects that my husband is low in testosterone and needs more thyroid hormone then what he is currantly taking.
Treatment right now for my husband is taking diflucan for 30 more days to get rid of the fungal infection that he still has. Then he will be put on refampin, zithromax and bactrim to get rid of these coinfections. After this is done then the doctor can treat the lyme.

I talked to the doctor some and I asked him what would cause abdominal pain. He said that it is likely from the lymph nodes swelling in the abdomen. I will have saliva testing done for my hormone levels and have Igenex testing done in 4 weeks. I have to have the antibiotics out of my system for at least 4 weeks before doing any testing. I will see this doctor in about 6 weeks. He also told me to stop taking the diflucan because this would not help my abdominal pain.

My son sees this new doctor on Monday the 28th. I am finally hopeful that someone will be able to diagnose his condition.

If any of you need to seek out a lyme specialist make sure they are an ILADS doctor. Our last doctor, we found out was not. He does not follow ILADS or Burrascano's guidelines to treatment of lyme disease.
Do not see a doctor that does not follow these guidelines. They don't treat you to get better, they treat you to make money.
We wasted a lot of our time and money going to the first doctor and it was all a waste.

Symptoms of bartenella: swollen glands, abdominal pain and sore feet when putting your feet to the floor in the morning.
Symptoms of babesia: air hunger, this is where you have the need to sigh or deeply inhale. Night sweats are also a sign of babesia.
These need to be treated first before lyme.


Mar 04, 2011 07:38AM -
I mentioned to the doctor on Thursday the 24th that I was having different kind of muscle pain. It was located in my biceps, thigh muscles and my ham string muscles. It was terrible cramping that wouldn't go away. He said it could possibly be herxing he wasn't sure. I stopped taking my antibiotics for 2 days the 26th and 27th to see if this would relieve the pain and it did. I started my antibiotic regimen again on Monday the 28th.

I was also due to take my progesterone cream on the 25th and forgot to do this for the next 4 days. On Tuesday I developed more body pain then usual. That night I had terrible all over body pain that wouldn't go away and lasted all night long. I took my progesterone that night and I didn't seem to notice any difference. The next day my pain wasn't to bad. I took my progesterone cream again on Wed. night and slept great. I did wake up to night sweats around 1:00 a.m. I mentioned to the doctor again that most of my severe pain seem to be tied to my menstrual cycle whether it be 10 days before or a week after. I have noticed that the past few months of menstrual cycles were less painful then prior ones.

Thursdays are always see the doctor, bandage change, blood and urine days. My doctor had the nurse pull my picc line out about a 1/2 inch because I kept getting irregular heart rhythms and cramping in my left arm at night when I sleep on my left side. Doc said sometimes the picc line can irritate the heart.
I also decided to continue with my I.V. antibiotic treatment for another month. Everyone who I see in treatment tells me you really notice a difference after the second month. I am hopeful that this will happen.

My husband had his picc line out on the 14th because of his terrible rash. The rash wouldn't seem to heal and he was prescribed Difulcan (anti-fungal oral medication) on the 24th. The Difulcan has really made a difference in helping the rash heal. The doctor wants him on it for another week because he still has itching. My husband has been OFF the I.V. antibiotics for at least 2 weeks and is seeing all of his symptoms come back especially having a hard time with restful sleep. He now realizes how much the medication has helped him. The I.V. antibiotics help your body very slowly and it makes it difficult to notice the changes. It isn't until you stop treatment that you notice the difference. Hopefully he will be able to start on another I.V. soon. He really is feeling awful.





Feb 13, 2011 04:49PM -
I have had a stiff neck that comes and goes, tightness in the front of neck that goes into the jaw, temple pain, headaches, tight shoulders, chills, and mild nerve pain on and off for about 4 days now. I also have more mucus drainage the past few days along with left ear discomfort. Saw the doctor on Thursday 10th and he didn't have anything to say about my sinus issues along with a slight cough. Well on the 12th the cold hit me. On the 13th I got my period. All of these conditions at the same time are really making me fatigued. My pain has been mild considering what I am going through.  The antibiotics must be helping because my pain is moderate to low prior to my cycle. This hasn't happened for the past 2 years. I hope it gets better from here.

My husbands PICC line skin infection is showing signs of spreading. He has also been suffering with neck pain, head aches, chills, very fatigued, night sweats sometimes and nausea. He may be herxing, we are not sure. We see the doctor on the 14th to look at his PICC line. Have to wait and see what he says.

Feb 08, 2011 09:58AM
I tried the terrible tasting tea (2 times) given to me by my Chinese herbalist / accupuncturist. The next evening I developed a terrible migraine. I stopped taking the tea thinking it was irritating my digestive system. This may sound strange but I developed pain in my abdomen on my right side, then it went to my right shoulder blade, then it went into my neck causing it to be very tight and stiff, then I developed I pain and an aurora (precursor to a migraine). I decided then that I was going to talk to my lyme md to have the PICC line put in regardless if I show up positive. I was told by my lyme doc that my 3rd test results were 85% positive for lyme. Insurance will not cover the expense but I couldn't wait any longer. My lyme doc is going to retest me two weeks into the treatment to see if I show up positive. If I do then insurance will pick up the tab.

I had my PICC line installed on Feb. 3rd and all went well except for developing another migraine later that evening. My lyme doc prescribed me Treximet for possible future migraines. My body pain has been much less since I first started antibiotics and I hope it stays this way. I do antibiotic treatment of rocephin I.V. 2 gms daily, plus doxycyline oral 100 mg twice daily. I take a lot of pro-biotics in-between treatments hoping it will keep away any fungal infections. My husband on the other hand has developed a rash around his PICC line. It started after the first day. We believe it was caused by a reaction with the glue from the compression bandage at the hospital. It is now developed into a terrible rash and the lyme doctor put him on cipro antibiotic to prevent infection into the blood stream. I didn't have this problem because I made the hospital techs use a different type of bandage. So far, so good.

I am about 4 days away from my cycle and I am starting to have symptoms of herxing a little. I am cold all the time, skin is more itchy, nerve pain at times, lymph nodes by my armpits are becoming sore and have had the night sweats on the 6th and 7th. I notice that I am not developing as much nerve pain as I usually do prior to my period. It is there but not as bad. I also have noticed that I don't seem to have as much problem with my cognitive abilities. We are both feeling a little better and know that treatment is going to be a long process.

We see so many people at the lyme docs office when we get our I.V. treatment and bandage change on Tues. and Thursdays. Many of them are in much worse shape then us. We feel very fortunate that we discovered this before it did terrible damage to our bodies. There are so many people ill with this problem and it is heartbreaking to see what they have to deal with daily. Anyone with fibromyalgia, auto-immune conditions, MS, neurological problems or any problems that can't be explained should seek out a lyme doctor and rule this out as a possibility. Your body is fighting something and doctors will label you with a condition not knowing it is probably being caused by lyme disease. This is one bacteria that is epidemic and being ignored by the CDC along with many others. My husband and I are being treated because we wanted answers for our conditions. Most doctors had no answers for us other than this happens.


Jan 21, 2011 02:39PM
On the 13th I saw my lyme doctor and my husband had his picc line put in. He is doing well. Two days after the antibiotics he developed the night sweats and more pain in his neck. So, far he is doing very well with minor discomfort. I on the other hand was doing pretty bad this past week. I had severe acid reflux that couldn't be curbed by medicine, entire mouth and throat was burning, felt anemic, bad eye pain, swollen painful glands on both sides of body by armpits, trouble sleeping, heart palpitations, feeling very hot, feeling terribly cold, terrible body pain and muscle pain and severe constipation. My lyme doctor believes that I was possibly having a herx reaction. There is no test for this to be sure. Thant evening on the 21st while sleeping I developed severe night sweats. The next day I felt so much better. I told my husband that it felt like my body went through a cleansing. I still have some symptoms but they are the every day symptoms I have been putting up with for a 2+ years. The glands have gotten so much smaller and not as painful. My lyme doctor wants me to look into possible treatment for rheumatoid arthritis before it gets to bad. He also told me he thinks that I have lyme even though my test doesn't show it and it has caused the onset of the rheumatoid arthritis. He has agreed to keep me on doxycycline since it is helping with some of my inflammation and pain. He also agree to retest me in a few months through his lab and also supply me with a blood sample to send to IGENEX labs in CA. IGENEX isn't covered by my insurance so, if I get a positive result, the antibiotic treatment will be out of my pocket. I need a positive result for my peace of mind, this is the main reason I am doing the testing. He said he would treat me with I.V. even with out a positive result. I am very happy about this. He has experienced many patients with my conditions, including RA with out a positive result and treatment helped fix most of their problems. RA may never be fixed. I also went to a traditional Chinese Herbalist / Acupuncturist to get a prescription for Chinese herbs to help with my inflammation problem. I have to brew a tea from these herbs and drink it twice daily. I can tell you that it is the most nasty stuff I have ever tasted. I hope it helps. My son has decided to stop treatment for now while he is in school. We had him retested on the 20th and will get the results back next week. His symptoms are still the same and the doctor told him to pay attention to any problems with studying or every day tasks. The nerves in my body are definitely being effected by these conditions severely. I am very afraid of what is to come if I don't do treatment soon. I will decide with in the next month or so.
Dec 28, 2010 08:27PM - 3 comments
My husband and I went to our family doctor today. My husbands glands under his arms are very swollen and we wanted to see if it was necessary to have any testing done. He suggested to start off with an ex-ray of the chest. He said if my husband has had these swollen lymph nodes for a while that it would be unlikely that they are cancerous. I mentioned to him that my arms and sometimes feet fall asleep while sleeping or sitting down. I also told him that I have swollen glands both my armpits now as well as in-between my breasts and armpits. He said as long as they do not get hard and don't get any larger then it is o.k. and that it is my body fighting an infection. I had problems with my hands falling asleep two years ago while I was going through constant gall bladder attacks. I believe that lyme is the cause of my gall bladder disease. I have been exercising, taking long hot baths and on constant antibiotics so, I am thinking that my body could be building up toxins. I noticed the lymph nodes getting worse after I started taking the antibiotics so, maybe it shows my body is fighting this illness. I have read that keeping your body at a higher temperature can help kill the lyme. Prior to my gall bladder removal in Nov. of 2008 I was exercising every other day for an hour and a half. The more I exercised the more ill I became until I didn't have the energy to do it any more. I have been feeling pretty bad lately even though the pain isn't to bad. I feel like our family and friends don't understand what kind of hell we are going through because we don't look ill. I don't think things would be so bad if I could get my emotions under control. This health condition is really taking it's toll on me mentally. I need to find some kind of distraction from this misery.


Oct 16, 2010 11:21AM
My ACTH test, hormones and all other tests came back normal. We no longer take the D-Ribose on a regular basis because it doesn't seem to do much. We usually take it if we know we have a lot of physical activity. My husband and I have been on Doxycycline 100mg 2 times a day for 12 days now. We have noticed that we are beginning to sleep better. My husband has noticed a very small decrease in pain throughout his body. I have noticed a much larger decrease in pain especially in my hands and feet as well as less problems with my low blood sugar. Our general well being has improved. We still have bouts of pain and fatigue but with time I believe this will eventurally go away. My son started on his antibiotics two days ago and we will have to wait and see if there are any changes. We all take strong probiotics 3 times a day to prevent and problems. We all go back to the lyme specialist on October 26th  to get blood work done. The doctor will make sure our bodies are tolerating the antibiotics and to recheck to see if he can get a positive test for lyme or coinfections.    





Oct 01, 2010 10:43AM
We received our lyme results and they were inconclusive. My husband did show signs of being exposed at some time to the lyme bacteria. The doctor said it was up to us if we wanted to be treated of not. Our insurance will only cover for a months treatment and after that we will be paying out of pocket. I am waiting for my ACTH testing to come back and I am having my son get an ACTH test done before antibiotics are taken. You can't fight lyme if your adrenals are fatigued. We all seem to becoming sicker with each passing day. We are all taking pro-biotic prior to treatment of antibiotics and also during treatment. I am putting my son on a gluten free diet and sugar free as best as possible to see if this helps his fatigue. The D-Ribose is really helping with my abdominal pain and muscle pain. It makes life more tolerable. I will keep you informed on our progress and any further testing results.


Sep 24, 2010 08:48AM
Waiting for lyme test results has been very difficult. I wanted to write a journal entry before the results come back. My husband and I are getting much worse despite being on this strict diet and thyroid medication and our Endo doesn't understand why. I believe we are all suffering from some form of adrenal fatigue or insufficiency. I believe this because our health was better before we started taking the thyroid medication. The armour thyroid med. doesn't give us any bad side effects and we don't really notice any positive effects either. I have read that if thyroid medication is taken and there is an underlying adrenal issue it will make you become more ill. Your adrenals should be addressed before given any thyroid hormone. The thyroid hormone puts to much stress on the ailing adrenals making your health problems be more severe. My husband and I are no longer taking the thyroid medication. I am scheduled to have an ACTH test done as well as DHEA, progesterone, testosterone, estradiol, aldosterone, cortisol, prolactin, FSH, and LH (luteinizing hormone) checked on the 29th. I have been having terrible abdominal pain in my kidneys, constant problems with low blood sugar even while on metformin (which I stopped also), rapid heart rate and cannot ingest any carbohydrates with out developing pain to mention a few. My full list of symptoms are on a previous journal page. These are all clear signs that something is wrong with my adrenals. The problem is that most doctors don't believe in adrenal fatigue and you have to develop a condition like adrenal insufficiency or cushings to be diagnosed as having a problem. They don't believe there can be an in-between. Adrenal fatigue will unlikely show up on standard blood work. Like checking cortisol or other hormones. Your hormones have to be pretty depleted for them to take notice and by that time you may not recover and have permanent damage to your adrenals. The adrenal problems can be brought on by everyday stress over a period of time, infections, viruses (like lyme disease), surgery, chemotherapy, serious injury or an accident (like a car accident). This is what is wrong with us and my son has a more mild version. He doesn't suffer from terrible pain yet or hypoglycemia. He does however have chronic fatigue and insulin resistance. I started my husband and my self on 5 mg twice daily of D-Ribose, 500mg 3 times daily of pantothenic acid B-5, and 500mg. vitamin C 3 times daily to our daily vitamin regimen. To anyone who suffers from chronic fatigue or fibromyalgia, you should seek a natural therapist to access your adrenals if your endocrinologist won't. I had suspicion it was my adrenals causing most of my problems for the past 21/2 years but no doctor bothered to check them. I had saliva testing done that stated I probably had an adrenal problem and I couldn't find a doctor that took insurance that would use those results. I questioned my endocrinologist about this 7 months ago and she dismissed it and said it was likely that I had a thyroid condition. My thyroid blood levels came out high normal along with reactive hypoglycemia and possible insulin resistance. She never checked my adrenals until now. Check into adrenal fatigue or insufficiency it can cause auto immune disorders because the adrenals control your immune system. The reason so many people have auto immune diseases is because doctors don't believe adrenals can suffer fatigue. I am advising everyone to look into this condition. I will let you all know my test results from my testing in future journal pages.


Sep 12, 2010 04:04PM
I had my blood checked for lyme on Sept. 7th and my husband and son are getting checked on the 13th. We then wait 2 more weeks to get the results. My intense body pain flare up seems to be settling down. I still have pain but it isn't as bad. It feels like every month or so my body gets into a flare state for about a month and then settles down. I have read that with lyme disease the body goes through flare states when the organisms die off. They have a life cycle of about a month and it releases toxins when it dies off causing terrible pain and illness. I am unsure if this is what is happening to me but I am sure I will know with time.


Sep 04, 2010 12:29PM - 4 comments
Ever since my last journal entry in August I have been feeling horrible. My husband has been feeling horrible also. We think he has fibromyalgia or whatever I have as well. My entire family which includes my husband, 19 year old son and myself have had blood work done through an Endocrinologist. We had our blood sugar and thyroid tested along with some hormones. We all showed positive for blood sugar problems and low thyroid. The doctor said she has never in her entire carrier seen all family members with the same conditions at the same time. She believes there is something going on that she can not detect. We told her that we decided to go to a lymes specialist and get thoroughly checked. She thought this was a good idea because lyme can cause blood sugar problems, low thyroid and adrenal issues. So, this is what we are going to do now. I have had blood in my urine on and off for the past 6 months, terrible sharp stabbing pain on my right side of my abdomen, pain in my kidneys, lower back pain, groin pain and much more. My edocrinologist said she would like me to get some further testing (ACTH, and others) but I am going to wait until I see the lymes specialist to see if it is nesessary. The doctors have done test after test and cannot find the answer to my pain. If I have lymes disease it is probably chronic lyme and have had it for the past 10 years. Here are my list of symptoms.


SYMPTOMS –
From head to toe

Excessive hair loss
Eye pain
Extreme light sensitive
Eye floaters
Severe dry eye
Flashes of light in eyes
Puffy eyes
Ear popping
Severe ear pain when flying
Headaches & migraines
Excessive thick mucus
Dry nasal passages
Dry mouth
Numbness in chin & lip
Teeth sensitivity
Neck pain
Pain in thyroid-inflamed
Gland-right armpit sore
Swelling and pain in hands
     and feet
Ridges on nails
Abdominal pain-goes
     through to back
Abdominal pain more on
     right side
Sharp stabbing abdominal
     pain
Blood in urine-microscopic
     no infection
Kidney pain
Pain under right shoulder
     blade
Acid reflux-mild
Ovarian cysts and pain
Back, Hips, lower legs and
     feet pain
Browning of skin and
     darkened scars
Rapid heart rate
Heart palpitations
Short & long term
     memory loss
Brain fog
Chronic fatigue
Reactive Hypoglycemia
Possible Insulin Resistance
Low thyroid-
     normal blood levels
Elevated Rheumatoid
     factor (54)
Fibromyalgia-muscle pain
Itchy skin
Low vitamin D
Low progesterone
Every joint pops-frequently
Cannot digest fat-causes
     bad breath, foul gas and
     stool, loose stool
Chills
Hot and cold
Muscle wasting
Right side of body is more
     effected than the left
Lower than normal
     Blood pressure
Painful periods- body pain
      becomes more severe
Dizzy-when bending over,
     Getting up from a laying
     down position, and while
     sleeping
Bladder spasms
Bladder infections
Vaginal infections
Had Chronic Constipation
    before thyroid med.

I will be sure to keep you all informed of my progress and hopefully it helps yours.





Aug 22, 2010 07:42AM
Period came on the 31st day. I had some body pain and sugar imbalance 1-2 weeks prior. Cramping, clotting and body pain were bad. I felt like I did prior to taking metformin. Started taking my supplements (magnesium, vit.C, Biotin, calcium, fish oil, B complex, multi vit., vit. E, Vit. D and Beta carotene) more regularly. I was lazy on taking magnesium, calcium and fish oil regularly. I don't know if this has something to do with the all of the symptoms coming back. My pain symptoms didn't go away after my period was over and my pain began to progress into my hands and feet. I called my Endocrinologist to have metformin increased for two weeks prior to my period. The medication was increased to 750 mg. I am planning on seeing her on August 26th because she needs to evaluate this situation. I also went to see the eye doctor on the 18th and he told me my eyes look very healthy but, I have sever dryness and an irritation of the cornea. I explained to him that my eyes have been aching along with itching, headache,and dizziness. He said the itching and possibly the ashiness could be caused by this but not the headache and dizziness. The last time I had headache and dizziness was before taking any Metformin medication. I had to request a new lab slip for my fat soluble vitamins blood test from my Endo. Hopefully I can have it done before the 26th. I concerned that the eye problem is caused by a vit. A deficiency. My eyes have gotten a lot worse compared to a year and a half ago. I am suffering from night blindness, floaters, colored spots in my eyes when they are closed, irritation of the cornea, dry eyes, eye pain and headaches. All signs of a vitamin A deficiency. If the blood test comes back with low vit A, D, E and K then I know that my health is being effected by my digestion. This leads me to believe that my pancreas has something wrong with it causing this abdominal pain when ever I overeat, eat fat or have blood sugar issues. I could be the route cause of eveything. My Gastro doctor could never determine wether I had pancreatitis. I pray this blood test shows something. I am watching my body deteriorate rapidly over the past 3 years. My diet, exercise, supplements and now medication aren't doing enough. I feel that there is something going on that isn't being addressed. It feels like my body is dying a very slow death.

Aug 04, 2010 10:36AM
I saw my edocrinologist today. I lost 10 lbs. and she was very happy. I told her have mild pain that starts to come back 1-2 weeks prior to my cycle and that it is difficult to control my blood sugar. She said this is a problem for diabetics as well. 1-2 weeks prior to your cycle the hormone fluctuation causes this problem. She feels that with time, loss of weight and regular exercise this symptom will eventually go away. I asked about increasing my metformin and she did not want to do that because of fear of possible side effects. If things don't get better before my next appt. in October she will possibly increase the metformin. I explained to her that I noticed the abdominal pain comes when my blood sugar is not under control and it is at its worst if I ingest any amount of fat. Ingesting fat not only causes abdominal pain it also causes bad breath, acid reflux, bloating, fowl smelling gas, fowl smelling and loose stools. This isn't her area of expertise so I told her I would ask my gastro doctor if there is some kind of enzyme that would help break down fat. She was very happy with my progress and said she would check all of my fat soluble vitamin levels since I have this digestion issue. I will see her in 3 months.

Jul 20, 2010 08:12AM - 0 comments
The medication is really helping. I was outside in the heat all day working on our deck and I came in exhausted. I ate a salad with chicken for dinner and it took an hour before I got some of my energy back. I have to be careful because it doesn't seem like my body has any sugar reserves to maintain my energy when I am very physically active. Moderate exercise throughout the day is best along with constant nourishment. When I am doing a lot of physical labor I can never eat enough to keep up my energy level. I hope this gets better with time. The day after working on the deck I am still drained. I woke up tired and ate breakfast. It is 9:00 am and I feel like I could go back to bed. My muscles are not overly sore. They seem to recover from physical stress a lot better than they used to. Sleeping has become an issue since about 6 weeks ago. I don't feel like I get into a deep sleep. I am very restless, muscles don't want to relax and my dreams are always waking me up. I have also been losing a lot of hair the past 6 weeks. I am unsure if this is possibly caused by the metformin or possibly caused by the armour thyroid meds. It almost feels like I am getting to much thyroid medication. I will see my Endo. on Aug. 3 and discuss this with her. I have read from other people that being on the metformin can eventually reduce your need for thryoid medication.



Jul 14, 2010 06:35AM
It didn't start off bad. A week before my cycle I would normally be in terrible pain. This month I am doing much better. I didn't have any bloating or swelling until the day before my period. My breasts became tender 2 days before. The 2nd day of my period I noticed I was more achy and fatigued than usual. The third day I had a head ache and body pain. My fibro symptoms have all come back even with all that I am doing. There is one thing the doctor still has to address and that is my low progesterone. I am going to have her do blood work to check the levels of my DHEA, Testosterone, progesterone and estrogen. I had them done 3 yrs ago and my testosterone was low. Pretty odd for someone with PCOS and insulin resistance. I had saliva testing done in 2009 and my progesterone was low, testosterone, DHEA, and estrogen were on the low side. I have taken progesterone cream for about 10 months now. It really helps with my pms symptoms, vaginal dryness and painful cramping. Maybe progesterone cream isn't enough to help my progesterone levels. I need to look into this. I also noticed my thyroid beginning to hurt and my throat very scratchy a week before my period began. This is another reason I think it is low progesterone causing the problem. Progesterone balances estrogen and if you have to much estrogen it can block your thyroid hormone from working properly.



Jul 10, 2010 07:53AM -
I started taking Metformin for insulin resistance on June 10, 2010. I don't have to many side effects except dry mouth and dry nasal passages. I have been on the medication  for a month and have lost 10 lbs. I deffinately notice a difference with my heart rate. I don't develop a fast heart rate after eating like I used to. It is still there but, more mild. My muscles are feeling better. They don't react with severe pain after activity, it is more mild and recovery is quicker. I am still having problems with abdominal pain especially when I eat fat or anything to heavy. My diet is very difficult because even eating fruit can give me a pain reaction. So, I try to eat fruit with some protein and that seems to help. My form of exercise right now is walking or doing activities around the house. I am currently helping my husband build and stain our deck. When I am done with that I will sign up for the gym to start an exercise regimen. I believe my body can handle it much better now.


Jul 09, 2010 01:13PM
Hi everyone, Here is my story.
In 1998 had ovarian cysts, heart palpitations, fainting, difficult time maintaining a healthy weight and migraines. Time went by with no answers or concerns from my doctors. Now it is 2003 having more painful periods, neck stiffness and pain, attacks of pain in-between shoulder blades once in a while, headaches and an increase in bladder infections and vaginal yeast infections. No explanation from doctors. In Sept. 2007 started having really bad acid reflux. Jan 2008 had a severe pain attack that I later found out was biliary colic. Had my gall bladder checked through ultrasound and told it was normal, no stones. Found out I was Vitamin D deficient and started taking 50,000 units every 2 weeks. The attacks continued along with extreme fatigue, bloating, weight gain, abdominal pain, constipation, headaches, migraines, cysts on my ovaries that were growing causing me terrible pain. After 10 months of being unable to eat normally, suffering constant biliary attacks along with terrible ovarian pain, my gall bladder was finally removed (no stones just inflamed and not working). My abdominal pain and fatigue continued after gall bladder removal with no explanation from doctors. July 2009 7 months after gall bladder removal was diagnosed with fibromyalgia, low vit. D (was lower than previous year even though I was taking 50,000 units every 2 weeks) and an elevated rheumatoid factor. My symptoms were so many after I was hit with the fibromyalgia. I had painful periods, body swelling, painful lumps in breasts that would develop prior to period, abdominal pain, vaginal infections, bladder spasms, bladder infections, constipation, eye dryness, vaginal dryness, body muscle pain, pain in my hands and feet, extreme fatigue, brain fog, short and long term memory loss, headaches, low body temp., always cold, hair loss, rapid heart rate, sleep problems,teeth pain, bones constantly pop, bruise easily, and many more. Was told by my rheumatologist that I would likely develop rheumatoid arthritis and suggested I start taking an immune suppressant, anti-depressants and pain meds for my condition. He couldn't explain all of my symptoms and said I need to see other doctors, so I did. I refused medication and decided to go the more natural way. I put myself on a strict diet of low sugar and no caffeine, started taking digestive enzymes (after every meal) and vitamin supplements, fish oil, and calcium/magnesium every day. This seemed to help with my pain and fatigue. Then in Sept. 2009 I missed a period. Went to my Gynecologist and said I should try taking prescription progesterone cream to see if it helps with my period and the vaginal dryness. I got my period back the following month. My periods became less painful and clotty. I didn't have the painful lumps in my breasts as long as I took the progesterone cream. The only problem was that the progesterone cream made me very hungry and I went of my diet. Once I went off my diet the pain came back and worse. In Dec. 2009 noticed tenderness in the thyroid area. March of 2010 saw an endocrinologist for my condition. She checked the thyroid through ultra sound and found it inflamed. She did a thyroid blood panel, said it was on the high end of normal and  had me do a glucose/insulin tolerance test. The glucose test said it was high normal and that I had reactive hypoglycemia. I was started on a low dose of armour thyoid to see if that would help with all of my symptoms. Six weeks later it helped with some of my symptoms and I was feeling pretty well and  went off my strict diet again causing me even more severe pain in body and extremities, fatigue, pain in ovaries, rapid heart rate, and bladder spasms. Went back to endocrinologist she diagnosed me with insulin resistance and prescribed Metformin. The metformin has helped with the sudden rapid heart rate, fatigue and muscle pain. I believe that diet, exercise and Metformin will help get my body back to normal. I was always a very active and ate healthy. My doctors could never find anything wrong with my blood work. It always looked great. If you have ovarian cysts or PCOS you should be watched to prevent future problems, like diabetes. Insulin resistance has caused a major imbalance in my hormones and it is very difficult to get back to normal, especially being at pre-menopausal age. This hormone imbalance I believe to be the cause of my gall bladder failure, irregular and painful periods, fibromyalgia, thyroid inflammation and reactive hypoglycemia. My sister was recently diagnosed with this condition (also lost her gall bladder the same way) causing my doctor to believe that it is hereditary. My son and mom are next to be checked. Just keep in mind that medication will only mask this condition. Good Luck to you all. It is amazing how one thing can effect so much. donjoe341



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