posted
I am just so down right now. Today for the first time I see my father cry. He saw me in pain and he just started crying. He doesnt have money to help me, and four years into this we are not sure what's causing my symptoms. Been on antibiotics for more than a year, and with them or without them nothing changed.
I feel that my condition is getting worse these days and I am developing constant head pressure (24/7), and it's very intense. I also have extremly horrible pelvic and lower back pain.
Eye pain, ear pain, white tonuge ( had this for four years never resolved), digestive issues, headaches, hot flashes, shivering, sore throat, body aches, chest pains, dizziness, insomnia, weak, heavy legs, fast heart rate, feels like vibrations, memory problems, I am experiencing all those symptoms at the moment.
I have hormnoal imbalanced, and low vitamin D with high Ca levels. I have a blood disorder called alpha thalasimia.
I am taking supplements, eating very healthy, and when I can I do yoga.
For some reason I think there is something going on other than lyme disease. My lyme doctor at one point told me I don't have lyme disease. I was symptom free for a while ( wasnt on any meds), and the doctor told me if it was lyme you had it's gone. Maybe she said that because I wasnt having any symptoms and wasnt on any meds for more than a year.
I honesly don't think antibiotics did a thing, I have something going on and it keeps coming and going, and it gets so much worse in winter.
I am at the point where i am so sick of going to doctors, it has put me in so much debt, and my dad lost his job, so that's not even helping.
I am 21 and this is seriously ruining my life, and have a feeling from this point on it will not get any better. For four years I been thinking it's going to go away, and I should stop leading myself to disappointment.
Sorry needed to vent. I also apologize for any grammer and spelling issues. I am typing on my phone, it's almost one in the morning here and I am out of it.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
Wow, as I read you story I thought you were writing about me.
I had/have everything you described and more. I have Lyme and Babesia.
Many of the symptoms you describe sound like Babesia.
BUT, I was recently also diagnosed with hyper parathyroid.
I just had surgery earlier this week. I would get checked out for that.
I had high calcium, high PTH, neck pressure like something was growing in there (it was, had a huge nodule), terrible hormonal and thyroid issues.
It would be worth having a ultra sound to see if they can see anything.
Also I had a sestamibi scan of my thyroid that showed I had unusual activity in my thyroid.
I ended up losing 3 of my 4 para-thyroids and the right side of my thyroid because of the nodule.
I have to say my throat is sore, but feel better already.
I still have Lyme, but think half of my issues were from the parathyroid.
I am sending you a pm with info that might help you get some financial assistance.
I don't know, but would encourage you to try.
Hang in there, I know what it is like to see a grown man cry, my husband is as strong as they come, but the tears still come.
Nice to see dad cares so much.
This is a terrible disease and many are working round the clock to try to find a cure for this.
Take care and hope the symptoms get better soon.
Posts: 620 | From Ks | Registered: Oct 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Have you thought about getting a second opinion. You may have had lu e, but you may be dealing with now the mess it left behind,candida etc. I have been on antibiotics for a ur and just recently got a second opinion. I am now having tests done to look at adrenal function as well as some other areas. I also tested high in candidates which its symptoms closely mimic Lyme. Have you ever been tested for candida? You don't need to go to an llmd for this testing. Your gp or gun can do the testing for you. http://www.CandidaSupport.org/?gclid=COOXt-GqqbUCFcdlOgodAQYANAPosts: 1748 | From United States | Registered: Dec 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If the abx are not helping you, look into treating parasites/worms.
Now being considered the number one co-onfection of Lyme. Google parasite symptoms. Antiparasitic herbs and salt/c saved my life after 4 yrs of abx were not getting me well.
Many that are chronically ill are finding they have this co-infection. Check out the current PARASITE WARRIORS SUPPORT THREAD. Sorry you are feeling so bad.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Hi Ema,
Your story sounds so similar to mine....except I've been dealing with it much much longer.
Only recently have I been seeing great progress.....thanks to parasite treatment. I had NO CLUE I had parasites. Tests had shown up negative, and I never even complained of stomach aches. So I was completely surprised when I started treating, and found myself passing parasites every single day. I'm about 8 months into treatment and I'm still passing parasites.
Check out some of my past posts, and the Parasite Warriors Support Thread.
Without a doubt I think you need to consider treating parasites.
Wishing you well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
there is a lot of new thinking that abx are not the answer. the bugs know how to hide from them. herbs are harder for the bugs to figure out.
and it never is just lyme(Bb)-if you have Bb you have other stuff
try buhner herbs-i have a friend doing really well on his herbs and guaifenisen to cut biofilm
posted
Ema, I can really really relate. No real words of advice, sending you many hugs.. Posts: 394 | From Southeast | Registered: Oct 2012
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Ema, So sorry to hear this. There are so many other ways to heal besides abx. My family only improved slightly on abx and then was able to get much better through herbal treatment.
You can start taking the salt/C protocol which can hit many things...in case you don't have lyme as in my case (mine is gone from herbal treatment). I got rid of my lyme but have been sick with parasites and mycoplasma....the salt/C is killing the mycoplasma and that is really helping me.
The white tongue is most likely thrush from candida. Try adding Agrisept-L (GSE) to your protocol....start very slowly with 1 or 2 drops in a large glass of water. You can purchase it on Ebay and it is less than $20. It should kill yeast and also babesia which could be causing your head pressure. If you get a reaction to it then you will know it is doing something. Same with the salt/C.
If you are not herxing or having any reaction to the abx besides stomach upset, then most likely they are not doing much.
If you can afford to go to someone trained by Dr. K for muscle testing, that would really help you a lot so you can see what is going on.
Best, tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
People who say maybe this is something else, not lyme may be overlooking how many places these bacteria can cause damage. So although something else could be going on that is not lyme, it can also be things that lyme is causing. That is why it is called the great imitator---can look like many other problems.
I am a bit concerned at a lyme doctor saying that if you had lyme, it is gone now. There is no way to know that lyme is gone.
The fact that you had this for years and only been treated for a year makes me question the lyme gone idea. If you read posts here, it becomes clear that longterm disease requires longterm treatment and some have not seen an improvement until after a year or after IV, or after coinfections have been addressed.
So sorry that you are in this situation. You have a lot of company.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Hi, it's been 5 years for me, and I never know what it is what. I totally understand the frustration of going from Dr. to Dr. and honestly, after the B/S surrounding misdiagnosis of this disease, I don't really trust any of them. I think Lyme Drs are hyper focused on Lyme, and not everything is Lyme. Having said that, don't underestimate this disease. It's a master of deception, that's for sure.
I am sorry about your Dad. It sounds like he is a great Dad. You are lucky to have him.
If it were me, I would try to research some of the other threads recommended, regarding parasites, co infections etc. Just keep digging. Ask for testing of thyroid, new bloods for auto immune. Maybe something will pop up.
Sending good thoughts your way. It's a horrible situation to be in, and I have been there for sure...many times in 5 years.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Ema, you said, "I have a blood disorder called alpha thalasimia."
I looked up Alpha-thalassemia and read a little about it. It is inherited, found in sub-Saharan Africa, the Mediterranean Basin, the Middle East, South Asia, and Southeast Asia.
It is protective against the more severe forms of malaria. The disease can be mistaken for iron deficiency anemia.
Treatment may include: Daily doses of folic acid Blood transfusions (as needed) Splenectomy (surgical removal of the spleen) Chelation treatments to remove excess iron from the body
You are of Arab descent, and were living in Israel until you moved to California. Your father is out of work right now.
I know there is no money, but I don't think your family should just watch you become deathly ill without at least trying to help you.
You said, "For some reason I think there is something going on other than lyme disease." Cozynana recognised your symptom of high calcium level, as she just had surgery for a nodule on the hyperparathyroid gland.
I think you should be evaluated for this, as it can be fixed. And you should get some treatment for the thalasimia.
However, if you sit at home and get sicker without trying to get medical help, you could die. You are having severe pain and difficulty walking, fast heart rate and chest pain. You've been ill for several weeks, and it's getting worse.
Hyperparathyroidism causes a number of medical problems such as osteoporosis, mental disorders, ulcers, pancreatitis, kidney stones, and other symptoms.
The pain you are having may be due to pancreatitis.
You are trying to be a good daughter and not embarrass your parents. But I don't want to read another story in the newspaper about parents who were arrested for not getting their daughter medical help while it was still possible. I've seen this several times, in my own city even.
Please find a reason to see the doctor again, and somehow let them know that your parents cannot take you to get any treatment due to finances, and what should you do? You may need to do this without your parents in the room.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue. Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad. Feel old. Don't have the interest in things that you used to.
Can't concentrate, or can't keep your concentration like in the past. Depression. Osteoporosis and Osteopenia.
Bones hurt; typically it's bones in the legs and arms but can be most bones. Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep. Tired during the day and frequently feel like you want a nap (but naps don't help).
Spouse claims you are more irritable and harder to get along with (cranky, bi#chy). Forget simple things that you used to remember very easily (worsening memory). Gastric acid reflux; heartburn; GERD. Decrease in sex drive.
Thinning hair (predominately in middle aged females on the front part of the scalp). Kidney Stones (and eventually kidney failure). High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
Recurrent Headaches (usually patients under the age of 40). Heart Palpitations (arrhythmias). Typically atrial arrhythmias. Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers).
High liver function tests (liver blood tests). Development of MGUS and abnormal blood protein levels.
. Well, that page is a real eye opener.
Remember It is almost never normal to have a high blood calcium level.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Sorry you are going through this. Stay in contact with this board and know we care.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Thanks everyone for the support. I really appreciate it. I did some tests for Parathyroid Disease, and we'll see what the results will show. The pain have eased a little bit today, I was able to get out of the house, but the head pressure is not getting any better.
I feel after I eat my symptoms get worse, I get chills and hot flashes. My emotions have been all over the place.
About Candida, I always thought that I have a candida problem, I had the white tongue before even taking antibiotics, whenever I get something like a panic attack the white tongue gets worse. I have been tested for candida, but it came back as negative. So, it kept me a little puzzled. Who knows the problem can be systemic candida, the symptoms are so close to lyme disease.
For my hormones my C-PEPTIDE and DHEA SULFATE are high. So the doctor prescribed steroids(Dexamethasone) for me to take for two days then do some tests to check if it's an adrenal issue.
@ Carol, I don't need to treat the thalasimia, well.. only when it starts causing problems, but as of now my hematologist said that my iron level is normal. It's just that my red blood cells are smaller than normal, so it doesn't carry too much oxygen.
Thanks guys for the help. I need to start somewhere in treating something, but as of now I am not sure where to start. I am just going to do the rest of the blood work, and see if it will show anything, or explain anything.
I am a happy that there is a place for me to vent freely, thanks guys.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Ema - I wouldn't put too much faith in blood work for lyme/coinfections etc... it is often inaccurate. If you have a white tongue and have been on abx, there is no question that you have candida. Anyone on abx for over a month will have candida!
The best thing to do is to try things and see if you herx...then you will know if it is hitting something.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
White tongues are systemic fungal infections. Symptoms are similar to Lyme. Also try the Lymelight foundation. They give grants to young people fighting lyme. It would help with treatment. I would suggest finding a dr who has trained under dr K. Good luck. Don't give up.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
have your FERRITIN checked, it's not part of the usual blood chems, get a complete iron panel and look at the iron stores.Ferritin is very important and is one of the most overlooked labs, for you it should NOT be more than 100. also get tested for MTHFR and KPU, u may have methylation and porphyry issues, also heavy metals.
Posts: 532 | From Texas | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by luvema: @ Carol, I don't need to treat the thalasimia, well.. only when it starts causing problems, but as of now my hematologist said that my iron level is normal. It's just that my red blood cells are smaller than normal, so it doesn't carry too much oxygen.
This triggered a memory for me, when I was reading about thalasimia and saw pictures of the red blood cells.
When I took Human Biology in high school, my lab partner was a boy whose parents were Lebanese. We had to take samples of each other's blood, and examine them under the microscope.
I was puzzled, because his red cells didn't look right...they looked odd and were irregular in shape. Now I wonder if he might have thalasimia, which is possible since he was Arab.
A couple things for the pain: A castor oil pack to the abdomen would reduce inflammation and help the smooth muscle cells of the intestines and internal organs. Or instead of doing a castor oil pack using a heating pad on top, you could massage some of the oil into your skin.
Castor oil is not expensive, and you'd need a piece of absorbant cloth, like old tee shirt material.
The components in castor oil pass through the skin to relieve pain and inflammation. This oil stains fabric, so cover the bed with an old towel when you lie down.
Do you know anyone who has a SOTA Magnetic Pulser or LightWorks? Either of those would be a gentle, noninvasive way to reduce your pain. I think I remember that you were friends with Jeff, from the Lyme chat, and that he might have had one.
Lyme does things that affect the hormones, causing all kinds of problems. The next time you see the doctor, ask if you have pancreatitis, and show her a copy of the parathyroid symptoms.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I'd like to second what LymeMom Kellye said, about applying for a grant from the Lymelight Foundation - they give grants to those 26 years and younger - I think you'd be a good candidate!
I think a lot of your symptoms sound like Lyme disease, and the white tongue sounds like candida.
It is not true what that doctor told you about not having Lyme - no way - you haven't adequately treated it, at this point. Plus the other questions you're raising, that everyone here is trying to respond to in multiple ways.
Feeling worse in the winter - could be related to less sunlight - ie, less Vit D that way, or it could be due to it being cooler, and we don't have good circulation as it is, so the cooler temperatures constrict our tissues more. Just my guesses.
For candida, you can go on a noncandida diet - I did it for awhile - I did a stepdown diet, since I craved sugar -
so I eliminated sugar but still ate fruit for 2 weeks, then I eliminated fruit and ate vegies, lean meat, and anything that was listed as ok to eat in the nonyeast books -
there's quite a list of ok foods that don't feed the yeast, and that's what we eat.
It will be an experiment, to see if you feel any better as a result of eating like that. We can do this diet as long as we have the right foods around us to eat.
Re the Lyme disease, I think you're going to need to treat it somehow.
There's the Buhner herbs - you can read "Healing Lyme," the book by Stephen Buhner - it's pretty descriptive of how they all work. There's a yahoo group, Lyme_Aid_Buhner - a lot of folks are on it because they can't do antibiotics.
For eye pain, I've been able to stop my Lyme eye symptoms by drinking mangosteen juice - there's lots of blends in healthfood stores. I like Mango-Xan since it's the most tart. We're all different in how we respond to things.
I take NOW Vit D drops and they make me feel more energy. Blood Vit D level can also be tested for. I did a bloodtest before I started taking them, and subsequent bloodtests show the bloodlevel is rising.
If you have low thyroid, taking Armour thyroid can help us feel better. That bloodtest should be done with a competent doctor.
For pelvic and lower back pain, I see a good chiropractor.
For pelvic muscle pain, I stretched out tight muscles in the swimming pool for 9 months, 2 years before I found out I had Lyme, and I fixed the pain by stretching out the muscles!
I basically held onto the ladder and side of the pool and found any stretch. I had to take aspirin in the beginning, and then the pain started to go down after a month of weekly stretching.
I put a torso float around me, and wore goggles and a snorkle so I wouldn't have to turn my head to breathe underwater when I did light lap swimming inbtwn the stretching.
If you were able to get a grant from the Lymelight Foundation, I'd have a doctor recommendation for you - someone who is able to sort out what's going on with folks.
One more thought, since your dad is upset about what's going on with you, are you able to make contact with any community organizations that might be able to help out financially?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Guys I have swollen tongue.. Anyone know what can be causing this!
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You should go to the emergency room if the swelling doesn't go down, or if your airway swells and you have problems breathing.
Well, if you cannot breathe, your parents will need to call an ambulance, which will take you to an emergency room.
When did this start? Did you take any new meds or supplements?
Are your hands swollen and/or itchy? Are your eyes itchy, or feel like they have sand in them? Any other rash on your body?
This might be Angioedema, a systemic (bodywide) allergic reaction.
You can take a dose of Benedryl, either liquid or capsules, which might stop an allergic reaction. The store brand is less expensive.
My father had this once, an allergic reaction to a medication. His tongue swelled so much that he couldn't close his mouth, and went to the emergency room.
He wasn't having problems breathing, but he was so embarrassed because he couldn't swallow his saliva, and was drooling. (Bring a towel along for this.)
Other times that it happened, his hands swelled, but he didn't see the doctor for that, just took Benedryl. His doc knew he was having this reaction, but still wanted him to take the medication, grrr.
posted
I have no clue I just felt my tongue is swollen. Two days ago I have pain in my tounge, and when I wake up o have bitter taste in my mouth.
I don't think it's an allargy to anything though. It's not too sever either.
I was just cleaning out my tongue because of white tongue and that's what I noticed. I am feelong alright at the moment, no sever symptoms
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Okay, that doesn't sound like an emergency.
I'll have to think on this. I know the Chinese have a system of analyzing the tongue, and a swollen tongue means something....maybe kidney problems?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Re treating candida, you can change your diet. You should google for the list of foods you can and cannot eat on a nonyeast diet,
and then prepare for the diet before starting, as in having the right foods available and the wrong ones not available.
I did a stepdown diet re craving sugar. I eliminated sugar but ate sweet fruit for around 10 days, I think it was, before I lost the craving for the sugar.
Then I eliminated the fruit and just ate veggies, lean meat and whatever else was allowed on the diet.
It's a worthy experiment if it's going to help restore some of your health.
Out of curiosity, I just googled for swollen tongue Chinese medicine interpretation. There are lots of pictures of swollen tongues, and all kinds, with interpretative descriptions! If you want, you can see if you can find the tongue descriptions that match yours!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
@ Robin, thank you so much, I am going to try and do that
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ema,
If you become symptomatic when you eat that's a BIG clue that the problem is in your digestive track. Check the symptom list at Humaworm for parasites. Candida and parasites go hand in hand.
Parasites can lead to major problems if left unchecked. I am posting this again because you might not have paid much attention to my post above thinking this is not your problem.
Why not try some antiparasitic herbs such as Parastroy or Humaworm, some coconut oil and salt/c. These are very inexpensive and you can purchase them at Vitacost. It's certainly better than doing nothing.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I have been thinking of doing the salt / c protocol. Im just afraid it will cause more harm then good.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
ema,
sea salt is VERY different than table salt and is antimabacterial and contains ,many minerals that we need. It is almost identical to our own plasma. Both vitamin C and sea salt also support the adrenals.
This along with the antiparasitic herbs fight many infections. Google sea salt health benefits and read up on it for yourself.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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