I am writing here as i find these boards are the only place people can really understand even remotely about things.
Two years ago i was on cloud 9. I was studying towards my degree and very happily married.
I had had a couple of months of severe constipation out of nowhere. I was not sure what the cause was and tried so many different things to relieve it. It did seem to disappear for a little bit.
By the end of November 2013 my husband and i decided to try for a baby and by December i found out i was pregnant. In early November i had some dental work done and a root canal.
I started to feel a bit off at times (spacey), and had light sensitivity to indoor lighting. I just put it down to the pregnancy and maybe hormones and ignored it. I could tell a week after my positive pregnancy result that something wasn't right. A few days later i miscarried.
I felt ok for a few weeks after this as far as those symptoms went, and then randomly one day they came back and have been constant ever since. The first complaints were the following and started in January:
Constant spacey feeling (Constantly feeling off, drugged almost, not like i am in reality) Extreme light sensitivity but only to inside lighting
(i actually feel pretty normal in natural lighting outside which is a bit weird because i hear most lyme sufferers have natural light sensitivity), but indoor light always look just off and spacey and bright to me.
Severe constipation (Stools are always pellet like with lots of mucus in stool Achy neck Severe tiredness Anxiety Depression Constant sore throat Itching in/behind ears, itchy armpits
I saw tons of doctors, none who knew what was wrong. One said it was a bad sinus infection and prescribed ceftin. Ceftin made me feel x10 worse and like i was dying.
I looked this up as it didn't seem right and read about herx reactions with lyme disease, but nothing about herx reactions from a sinus infection! I was not convinced it was just a sinus infection and continued to pursue answers.
A few forums started to point me towards lyme and thinking this could be the culprit. I tested negative for lots of co-infections and the lyme test.
The doc also tested my CD57 which was a 62. She said this was low, but most with chronic lyme are below a 60 and so that ruled out her thoughts of me having lyme.
My ATP was also a 19. I supplemented with ATP fuel she had given me, but when i went back the ATP number was even lower.
Her diagnosis was CFS and Fibro. We also discovered i had reactivated EBV, gallstones, and high blood sugar (pre-diabetic).
The weird thing is that by August i slowly started to have issues with tingling, numbness, loss of sensation in area of my body, joint pain (specifically in my hands and finger joints)
I also get really heavy feeling calf muscles and twitch in many places over my body too. This twitching also started about 7 months after my first symptoms started. I twitch in my calfs, eyelids, arms, legs, and even bottoms of feet.
My hand pain in the joints and loss of sensation in them along with a weird burning sensation in them is now probably one of my most bothersome symptoms.
When i type a lot my fingers drag the keyboard and the whole of my arms feel tired and my joints hurt. My hands also cramp all the time. My biceps also feel tight and tired and achy.
The other most bothersome symptom is by far the constant spacey feeling and the light sensitivity inside to artificial lighting.
I was not convinced that lyme could not still be a possibility, so i went to see another doctor who did in fact run the igenex test and some other tests. He found:
IGENEX/IGM RESULT positive CDC/NYS RESULT positive
18 + 31 + 39 + 41 +
I also had high reverse T3 serum, high DHEA-sulfate, high M pneumoniae IgG Abs, and two copies of the same mutation (A1298C/A1298C) identified.
I found out all these results online but was never contacted through the office for these results even though they said they would call. I found my treatment unsatisfactory and decided to seek my treatment elsewhere.
I am trying to stay positive but i feel absolutely helpless. I am on the waiting list for two doctors but i believe both have months of waiting because they are very popular. I am losing hope and never seem to read about many getting better.
I also have other weird issues that no one can find the reasons to. I have been tested over and over for bladder infections because my urine is constantly cloudy and has a strong odor, yet no infection is present although wbc are. My lower back always aches also. I have lots of gyno issues. Constant itching down below and discharge.
I feel like i will never have my life back and sometimes i wonder if this is all lyme related or i have many other issues. I can't ever seem to find a doctor willing enough to just keep testing for lots of possibilities.
I feel like my illness is progressing as new symptoms have appeared. Does lyme have more symptoms happen randomly months later? I thought most had the same constant symptoms throughout that went away maybe for a few days or weeks, but not new ones come on 7 months after the first lot of symptoms?
I don't have much support at all and feel very alone. I live back with my parents now as my husband wasn't very supportive and my illness started to push some distance between us and we finally separated.
I worry daily that this will kill me and that some of my symptoms could even be the onset of ALS. I feel depressed and i am trying to stay positive but it is so hard. I wonder how much of this is other stuff opposed to lyme.
I am only 25 and i feel like my life has been taken away from me and i will never get it back. I wonder how long it will be until i may not even be able to type anymore, because it feels like my hands are getting worse.
I have also had excessive thirst now for a very long time. I often wake up in the middle of the night with severe dry mouth and have to get a glass of water. It seems no matter how much water i drink though i am still thirsty.
I also woke up today with a sore throat and white patches on the sides of my throat. The sore throat randomly went away for months, but now it seems to be back. I am sorry for my long rant post, i just feel helpless right now.
................................................
Breaking up your post so it's easier for many here to read it -
I wrote a lengthy reply, but when I hit the button to send it the message had been moved to medical questions and I lost everything I typed.
Running out of strength so I'll have to keep this one short. I have a lot of your symptoms too, mine started 8 months ago. Just lost or house, moved in with in laws. I have been unable to work. Walking is ridiculously difficult and I have constant pain. I feel like I'm dying all the time too. I've had new symptoms pop up every few weeks too.
I had the exact same reaction to Cefzil (same class as Ceftin) that you had. Ended up in the ER.
I'm seeing a couple of lyme doc's in Louisiana. I live in TX too. PM me if you'd like their info, I'm happy to share!
Trying to start the Cefzil again, along with other meds. Going slower, so hopefully I can tolerate it this time.
I had 9 +s on my IgM western blot and was Igenex positive. Was 1/2 of a + away from CDC positive.
Just curious, did you take abx for anything before your problems started?
Sam
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
posted
The thing with Lyme is, when your body is weak, there IS a bunch of other stuff, too. Other things take advantage of the weakened body, so, just as you're wondering how much is other stuff, most likely a lot of it.
But it's also Lyme.
You need a comprehensive doctor who will work on all the stuff. If you're just taking meds for Lyme, that's likely not enough. You need a comprehensive program to get well from Lyme. Check out the Burrascano guidelines at www.ilads.org for a starting point.
You also might need to address that root canal. Use "Dr. Google" to research root canals. Sometimes the infection in the tooth can still be causing problems. Since that was the start of the issues, I'd look into it.
I was CDC positive for Lyme and am well today. I addressed all side issues. Exercise and rest was a big piece of the puzzle, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
What does everyone think of lyme causing ALS? Do you think this is accurate? I have had times when i choke on water and drool also. This concerns me too.
I did actually have the root canal tooth removed, although i am not sure if some infection can still remain. A holistic dentist did check under the tooth for infection and said none was present though.
Is it safe to your knowledge to start this protocol without a doctor? I am on a waiting list for one but wonder if it is worth doing all i can until then as far as the Burrascano protocol goes.
I guess the issue is you don't really know if your doctor will test for everything you could have issues with. That is where i get lost because i saw one LLMD who never even tested for mold or heavy metals which was pretty surprising considering i hear so many check for possible issues with these.
..............................................
Breaking up a paragraph for easier reading for many here -
posted
Well, you've come to the right place! We understand what you're going through! And good for you for having the root canal out - that's a step in the right direction, I think.
No, I don't think you will die - so many of us go years before we're diagnosed and we're still here!
And yes, ALS is linked to Lyme. A doctor we know stopped his ALS symptoms successfully with antibiotics.
You will feel better with some treatment. So I hope you're following up on the leads SickSam is giving you. You can also make a post in Seeking A Doctor if you would like some more referrals.
Then we also have Support Groups listed at the left - click on United States and Texas. And every state has a yahoo group. Yours is http://health.groups.yahoo.com/group/texaslyme - ask to be added. You can discuss doctors etc.
I think most of your symptoms sound like Lyme - it inflames the nerves and causes the nerve symptoms. It lowers your metabolism and you feel spacy. It slows down intestinal peristalsis and causes constipation. The flip side can be diarrhea for some.
It uses up magnesium for its reproduction and thus we don't have enough for our ATP energy, ergo the tiredness and twitching.
It knocks out our thirst mechanism and we don't know we're thirsty.
If you google for the organism - it's usually borrelia burgdorferi for us - and study what it does, you'll understand the symptoms.
A CD57 count can be up there and people still be ill. I spoke with the originator of the test - he said that Lyme patients can have a higher CD57 count and still be ill, just as people with AIDS can have a higher CD4 count and be ill. My count is in the 140s and I have Lyme.
Conversely, though, a very low CD count goes along with a Lyme dx and usually raises with some treatment.
So, for treatment - I started before I saw a doctor! And it worked in many respects. I studied and applied. Then when I saw a doctor, they did bloodtests and genetic tests and I had more info to go on that was specific to me. And you will too, with a doctor that tests you.
Interesting that you already have SNPs identified - the 1298 stuff - I can't find my interp sheet or I could tell you what it means - so why don't you google for it? There are groups now who discuss all of that genetic stuff online now.
It will probably affect your detoxing, but without seeing my sheet, I'm not sure.
So, some remedy suggestions for your symptoms, with a caveat that we're all different in how we respond and the trick is to find what works.
Constipation - drinking mangosteen juice stops that for me. It's an anti-inflammatory juice you can find in healthfood stores and online. I like the Mango-Xan juice version as it's the most tart. If you try it, drink a little bit and see how you do, as it can be powerful.
Eye symptoms - also the mangosteen juice. Drinking it stopped all eye symptoms for me in 24 hours time.
Twitching - you need magnesium and you can find out which version(s) you tolerate. There's Natural Calm powder, there's magnesium glycinate, Lymetoo has a magnesium she recommends - you can pm her for it - click on her name above. And more kinds, I'm sure - folks will be along to make recommendations.
Loss of sense of thirst. Just make sure you're drinking water! Enough of it might even help dilute your urine.
Spacy - I'm going to hazard a guess that it's low thyroid. You can have your TSH and T3 tested. If T3 is low, you can take a thyroid supplement.
I went on Armour thyroid and felt like I returned back to my environment - in other words, my metabolism was working better again and processing input.
Naturethroid is also good to take. My doctor says he puts his low thyroid patients on one or the other.
Supplementation - you can start taking a good B complex, Vit C, VIt D is good for the immune system and your doctor should test your blood levels for it. Mentioned the magnesium already. Take a good probiotic, especially when antibiotics start. Take a good fish oil.
Turmeric is amazing. It can take down inflammational pain. I get it in bulk at the healthfood store and put it in 00 size capsules. It's anti-Lyme too, so you could start to treat yourself with it. I'm not a doctor, though, so these are just my observations.
Other symptoms you're describing make me wonder if you also have a yeast infection. I suggest you google candidiasis and see how many symptoms you think you match. It can cause white patches in the mouth. If you do, it will be best to follow a nonyeast diet for awhile.
And so can coxsackie virus, I think - so I suggest you google that one too and look at the symptoms.
Re the rest - sorry you lost your baby. Not easy for us re the hormone situation.
And many don't have good support, even though we should, because we're sick and need it! So I would suggest for now getting your support from people who understand what's going on - that's online, and maybe in-person support groups - and get yourself educated now so you'll know how to talk to people about what's going on.
I have found that it's a lot easier to remain calm and explain the mechanisms of the illness so that people can understand what's happening. Then I ask for their support, and how can we work this out. Some people will be there for us and some won't - it's just the way it is.
So you need to get YOU clear on what's happening, start some supplementation, and keep talking with everyone - it will get better.
And you sound like a person who takes initiative - that's good, and will help to counter feelings of helplessness, especially as you start to try remedies and see what each one does. I suggest you not mix them but try one at a time right now to see what your body response is.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Pm sent
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Here's a link for tests to have your doctor run:
Not every doctor tests for heavy metals or mold. You can still get well without these tests. In my experience, these tests can come later on if you're not responding to standard treatment.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
ALS is a disease of unkown origin and some peolple with ALS have been found to have Lyme as a cause.
I'm glad you got the tooth taken care of. It sounds like you went to the right dentist!
I ended up getting well with alternative protocols. I also had to address mold and metals as you mention above.
I think it is worth doing what you can while you wait as far as natural treatments go. If you chose to add pharmaceuticals, you'll need a doctor, of course.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Regarding the light sensitivity, I am sensitive to fluorescent lights. I suspect it is primarily because they flash, but they also put out significant magnetic fields as well. They flash so quickly that most cannot detect it, but I believe the neurological system can tell.
Sunlight does not have that issue. I am not familiar with the idea that lyme sufferers have sensitivity to sunlight, although probably some do.
I suggest you consider determining if it is all man-made light, or just certain types, such as fluorescents, that are causing you this problem.
I use incandescent lights at home. These are the kind of light bulb that would have been considered the ordinary light bulb some years ago.
You will see the bulk of light bulbs now offered in most places are fluorescent, due to the Energy Independence and Security Act of some years ago, which finally implemented rules a few years ago.
Incandescent light bulbs at good wattages, like 75W or 100W, are now illegal to sell, unless they are for special usages, such as 3-way bulbs or flood lights.
...............................................
Breaking up a paragraph for easier reading for many here -
[ 04-13-2015, 03:45 AM: Message edited by: Robin123 ]
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
posted
I sent you a PM in response to your query about my doctor. I'd say, get on his waiting list, then call the office and ask to be notified if they have any cancellations! You could get lucky and get in sooner.
I am treating for yeast along with the other protocols. Perhaps you can get a local doctor to start you on nystatin or Diflucan for the yeast.
Please hang in there, you will get well! Believe it or not!!!
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
posted
Are drooling and choking issues common with lyme? Also excess saliva in the mouth. I have the most random symptoms that come and go out of nowhere.
-------------------- Lucy Posts: 9 | From Texas | Registered: Mar 2015
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I had the drooling for a while, and some dental assistans have said I sure do make a lot of salive in my mouth. That may or may not be related to lyme, I imagine. Keep in mind, lyme can cause neurological difficulties, and, as the neurological system affects functioning of basically everything in your body, there is plenty that can go wrong.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Lucy, The choking issues were ones I got and I choked on food and drink.
I would sputter them up when trying to swallow. It got better with treatment.
I also lost muscle tone, and still fall over quite a bit.
When the brain swelling gets bad the sputtering and choking comes back.
But I was facing what you're facing and treating helped to save my life.
I hope you are doing OK, and I hope you got in to see a doc.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
So -what exactly was the dental work you had done? I know someone who had dental work and then had lyme and after they had some dental work removed they gradually got rid of the lyme symptoms. It could be that your immune system had kept the lyme at bay and then the dental work overburdened the immune system. Apparently root canals can be a big problem for some people - is it your first root canal? Hopefully you didn't have any amalgam fillings at that appt....
I am so sorry for your loss of health and for the loss of your pregnancy. I had a miscarriage on Christmas Day and was rushed to the hospital because of severe blood loss. Not fun.
You will get better :-)
Posts: 123 | From Washington State | Registered: Dec 2013
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I wouldn't buy into the whole ALS (label) crap if I were you. IMO it's lyme and babs. Choking was babs for me. I choked on everything, even air.
Drooling was a parasite issue, at least I think it was as parasite meds got rid of it. I think the meds can work on lyme as well though.
You should know that parasites are hugely connected with lyme. Dr. K treats all of his patients for parasites first before lyme, otherwise it takes much longer for people to heal. Unfortunately, most docs miss this. Testing for it is pitifully poor and not even worth it IMO.
The bladder issues and itching for me turned out to be parasite related. Checkout the PARASITE WARRIOR'S THREAD, lots of good info. Don't miss this co infection, as it's a major one.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic