I have been going down like a ton of lead, and have spent the last 2 weeks in a dememtia like fog, back and forth to hospital. I seemed to have developed arthirtis all over my body in the last week and have experieced many neuro symptoms before.

With a screwed GI tract, what does one do? This is the basis of the immune system and if I am not processing things properly, how would anything work. My iron is low.

My abdomen would blow up like I am 6 months pregnant and then nothing works and I wonder about paralysis of the insides or scleroderma, diffuse.

I have the skin kind, not dx'd but so obvious, being 33 looking 18 with no wrinkles. Skin looks worse lately, like you can see through it ,and people are starting to stare. Lost 10 lbs in a month, and don't look healthly. Nobody can say I don't look sick now.

Just saw a new doctor, being my gp is a quack, and recommeded the mg malate and gave me flexeril and iron tablets. See how my digestion handles it. I have been taking a break from supps, which isn't helping, but I don't know what to do anymore.

What do people do when this happens? I think part of the system has hardened or something, can't explain it. Anyone heard of this.

I gave up last week, cause my brain failed me and I had no more hope. Mentally I feel better, but have thought of admitting myself to the psych ward to give my family a break, he doesn't think it will help. I am at my bottom right now and it is frustrating. This disease takes so much out of you. Incredible.

My husband spent his holidays, carting me to hospitals and doctors appts, which were all a waste of time.

And think, I take care of a 3 year old all day. I don't drive anymore, give society a break, last time I drove into a sign in a parking lot. A few months ago a cat ran under my car, not my fault, but that was bad, as I am a cat owner and a new driver. I have driven over curbs, through school zones, slammed into curbs,(spatial problem), sweerved when someone beeps their horn ( starlte factor). So better to just put the keys away.

Don't mind my thread, being all over the place, just resembles my brain, and it is working good today.

Any insight or advice on GI stuff would be great.

For me yeast and leaky gut syndrome are the prime suspects, and could also account for the weight loss and many other symptoms. I know you've wrestled with this in the past, but being off oral abx might give you a good opportunity to really get a grip on these two things.

I'd also strongly suspect parasites. There are several reputable companies that make OTC parasite cleanses, usually 2 week programs or more. They can be harsh, so it would be nice if you could consult with a naturopath when you do them.

Another factor in gut pain for us was c. difficile and h pylori -- they caused terrible gut pain and bloating . Because these are usually present in the healthy gut, but under control, a lot of docs don't like to test for them -- just treat them prophylactically. We did a 2 week course of abx (I can't remember what -- I'll look it up if you need the info) and peptobismal.

I'm reading the "Immune Restoration Handbook" put out by the Keep Hope Alive foundation -- there's some excellent info in there about gut health, surviving long term abx, and getting over chronic illness. You can order it, and go to the chatboard, at http://www.keephope.net The KHA has served a wide population for a long time -- from HIV to CFS to LD and so on -- and the recommendations in the book are based on years of reader feedback.

I know brain fog is a problem -- the book isn't technical and has laid things out simply.

If I'm remembering your posts correctly, IV abx have been almost impossible for you to get, but can you convince your doc to prescribe bicillin IM? That might help keep things under control and let your gut heal.

Since you have to be off orals anyway for the time being, can you do some non-harsh cleansing/detox protocols? Do you have a good naturopath who can help with this?

Most of all, I'm sending you a big hug (I won't squeeze hard enough to hurt, I promise!) The depression and anxiety that go with this are awful, and I know you feel like you're letting your family down. Which you're not -- if your husband was the sick one, you'd be carting him around, too.

Many are willing to help you learn about it.

Detox. Various means. An alkaline, low sugar diet for starters. The toxins are very acidic.

Mg citrate is avail. in trouches ("sublingual" might bypass rest of GI absorption problems?). The ideal would be IV Mg (another form) doses to slowly replenish.

Trouches are expensive though ($1 each) and require Rx. But can get powdered form or liquid without Rx. Timing is critical. We're talking very (!) small amts. often.

What point are you at...is Ca high or low? Same with K...is it high or low? A simple electrolyte (blood test) will show those.

Did you take a ton of probiotics while on abx.?

They have been (recently) found to be helpful for those with digestive problems.

Also, my husband had an endoscopy and colonoscopy done by a very enlightened GI guy -- who pioneered the c difficile tx -- and found that he was ulcerated from his esophagus through his stomach and colon. He also had 5 pre-cancerous polyps.

I absolutely can't get bicilin shots here. They don't even have them anymore I heard and you have to go to states to get it, or something like that. My gp would never do it. He has given up on helping me with lyme.

I took abx for H.pylori and am going to get the breath test when I have the $60.00 dollars for it shortly.

I know I have parasites bad, despite taking lots of primal defense and jarrodophillus, cause when the full moon comes I am a freak. Walk around the house in mental and physical agony and remind myself of an alzheimers patient pacing the halls in search of relief.

I think C.diffcule was what was killing me before abx, cause bacterial infection kept showing up in blood work and nobody would treat it, until later, so no doubt some serious damage done. Nothing showed up in barium enema. Just massage amounts of gas in Gi tract before procedure. Hoping I get some answers from ct scan tommorrow. I suspect I will need those other tests too, as colon cancer runs in the family. I have only been given prevacid and been told to take metamuccil 4 times the recommended dose and lactolose, which is a joke being loaded with sugar.

Scares me to be off abx, but I know these other problems need to be seriously addressed. My metal problems too. The more I do the yeast and sugar free diet, the more weight i lose and internal medicine is telling me to eat wheat and milk. They have no clue about these things.

What can be so upsetting is my husband getting his hopes up every time they do a investigation on my health. Like they will find one problem causing me to have every symptoms in the book. They gave me a gallium scan last week negative and now ID doc and neurologist don't want to see me anymore.

Marnie - my calcium is at the edge. Ionized calcium 1.35. Range 1.15-1.35

Also,in june Eos ABS 0.00, EOS % 0.00, Baso%, 0.02, urea 2.7, sodium 137. potassium 3.7, creatine 67, glucose 4.1

Thanks again for the advice I will reread the posts and make some notes.

Lymiecanuck

Thanks my ct scan tommorrow should show what going on I hope. Or just another test that is negative.

Im so sorry you are having these problems.

I had a barium enema done about a year ago. You are right it was not fun.

My tummy has been bad for the last 5 days and im not sure why. It could be any number of things.

I have powder nystatin that i was taking 4 times a day. I quit taking it because i thought it might be adding to my problems.

Does anyone think nystatin would help? If it is yeast in the GI track?

I quit my ABX two days ago. I hope it was the right decision.

Take care and let us know how you are doing,

Jordan

You can buy it online (google will give you a lot of sources), but if you do so, find out how they ship it and protect it from heat.

Jordan, the Immune Restoration Handbook ( available through the http://www.keephope.net ) strongly recommends plant source bioactive selenium, upward of 600 mcg, as a critical component for treating yeast and support the immune system. My doc agrees. NOT the artificial selenium. Anyway, check out the site -- there is a lot of good info specifically on treating candida, much of which I had never seen before.

Also very good detox info.

Good luck, you guys. I sure wish you all (y'all?) good health -- at least greater physical comfort -- SOON.

I was taking nystatin, along with abx for H.pylori and doc said it can be hard on stomach too, so hard to know what to do.

This has been the biggest struggle knowing the best route to take and what products to buy etc. I am also positive I was loaded with candida before abx, and this would account for rashes, acid reflux etc pre lyme treatment.

People should be careful of surgery and candida getting out of control, cause after c section had more symptoms and was more chemically sensitive. I think it is in hosptials like crazy and other care facilites passed easily from person to person. Various strains as well. I worked in long term care and probably picked up other strains there, being immune deifcient with all my problems.

Hindsight is 20/20 isn't it? If I knew then what i know now, I would be in better shape. I find it harder to fight candida and GI problems than lyme itself.

My barium enema was a waste of time, as nothing showed up. I stressed about getting this done, saying to myself I need this etc, and nothing showed up!!! Hopefully the ct scan shows whats going on so I don't have to do barium for small intestine. As I am sick of being poked, proded and injected with chemicals.

If ct scan shows nothing I guess I can assume a severe case of candida and parasites.

Thought I would update on my test results. IVP ct scan of ab/pelvis normal by verbal report and I am shocked. It is amazing what is happening and nothing shows up.

After all the testing this year for various things, I beleive that much of medical testing is inaccurate and a waste of time. So my next options is to check small intestine and maybe do upper GI and see what happens. No doubt need endoscope that I keep hearing about, but I think GI doc needs to order this test.

I do believe leaky gut, yeast, parasites are all involved. I did parasite testing through doctor at my sickest and most toxic time and it came back negative, so this test is garbage too.

So going to look at healing stomach on my own. Am taking dicetel(sp) for intestinal symptoms, and prevacid which doesn't seem to be enough to reduce gas pains for long. Waiting for funds to order what was suggested and am thinking of trying H.pylori kit from pharmax, which looks promising and not overly expensive.

I will start eating my greens soup, which is easy on digestive tract again, was not into making it for awhile, cause got sick of it, but really healthy and tasty compared to everything I can eat.

When will it ever end?

Many of my abdominal issues are made worse because I have a scoliosis which puts pressure on organs and nerves. My osteopath tells me that there is a feedback loop from the organs to the nerves and back. If something is off in the organs, it affects the spinal nerves and the spine, and vice versa.

I don't know if this is part of what is going on for you. It might be worth checking out. Regular adjustmenta, and recently, yoga, have been helping me keep this under control.

I also have to treat the Lyme, mold issues, keep my thyroid and female hormones adjusted, add supplements, etc. These complex illnesses can be like unraveling a tangled ball of yarn. They loop aroung and feed back, and you just have to keep following the thread.

I am so sorry to hear of your anguish. I have no words of wisdom to offer, it's just that your statement "I think part of the system has hardened or something, can't explain it." made me think back to a friend's father, a dentist, who chewed a lot of sugar-free gum. I know it sounds off the wall, but apparently an enzyme in the gum "cured" his intestines so they became tough like leather and lost their motility.

I don't mean to frighten anyone, but if you chew sugar-free gum, you might consider stopping.

I hope you find relief soon.

Riversinger, I know exactly what you mean. When the nerves in my back are acting up, my GI system doesn't work properly. I will ask my family doctor about this. It took me awhile to figure it out, but I did and wonder if crohn's is involved as well. I am waiting for an appt for bone density they are short tech right now, probably have it in a few weeks.

LYmiecanuck

So sorry to hear about all the problems you are having.

I had some similar problems myself in 2002. I was scheduled for GI studies, kidney tests, and a gall bladder test (HIDA scan) which was the only one I actually went to have done.

I was being treated for candida by a homeopath and had been tested for parasites. My parasite test was negative at the time, but have seen an alternative medicine doc recently who says I have parasites. I also have Lyme and co-infections.

I'm relaying all this to give you some info you can use to judge how similar our situations are. I had a chronic burning sensation in my stomach, facial flushing, abdominal pain and bloating, and my blood pressure was high. Also, my neuro-lyme symptoms increased with the pain. I am now 33 - was 31 at the time.

What helped me may or may not help you. What helped me was going off of Prevacid. I now suspect my problem was not too much stomach acid but rather too little. Stopping Prevacid, eating small amounts of low alkaline whole foods,and drinking lots of water was helpful to me. I also stopped taking all supplements because I just couldn't handle them.

I lost 30 pounds in three months going through my bout with Prevacid. I had significant GI pain and rarely ate. Once off of it, I returned to the much, much more mild stomach burning that had compelled me to see the doc who put me on Prevacid. I recently came to suspect that my problem may have been low stomach acid. I've heard that apple cider vinegar can help with low stomach acid, but have not yet tried that myself.

Good luck, whatever you choose to do!

I haven't found that most doctors really understand the spine/gut interface. My GI doc thought I was wacko when I suggested there was some connection.

My Lyme doctor thought it was possible, but didn't know how it might work. So if you think this is possibly an issue for you, make sure the doctor you see knows how to assess it.

Sorry to hear your going through this. This happened to me in 2000. I was doing variably 50-80% better, when over a period of 7 days, starting intensely at the 4th day, what took 6 months to develop the first time I was bitten, rapidly developed again over this 4-7 day period. Joint pain in every single joint, and a return of CNS b-i-g t-i-m-e. This time my thyroid gland got hit real bad. I had been cleaning leaf litter, and despite protective dress, got 6-8 bite marks on inside of ea. forearm--variably-sized, teeny-tiny marks to 1/8 in. in size, plus a few poison ivy blisters on left wrist/and forearm. Couldn't turn ignition key off; several times, I just gave up, and left the car running. Pain in all joints involved in driving, even many one would think would have nothing to do with driving. Any, every and all movements produced joint pain.
Attention span was like that of a cacaroach(1) on speed. Knocking things over, putting wrong items in the frig., and o/w getting thumb caught in refrigerator door handle on closing the door, spraining thumb joint. Putting a mug down on the table, and upon lifting hand away, and up or some other direction, only to see the mug flying off in the air off my hand, or knocked off the table. Banging and cracking plates and bowls upon transfer from dish basin to dish rack. Lumbo-sacral, thoracic, and other spinal joint pain opening/closing silverware drawers. I'm sure most of us have a collection of broken and shattered dishes and glasses. Rested a beach chair on graound against rear of car, then got in car and ran over the chair! I'm going afield here so I'll stop.
(1)spell. retrieval problem

Entire family was in white-knuckle anxiety. Police called to house. Daily severe arguments. It was real bad, and real surreal. "Armagaeddonoid" anxiety, "organic," if there is such a term,and anxiety over what was happening and would happen. Truly felt I'd be dead by august or september. Gave funerary, and other instructions to my brother in case of....
This sh*t never happened before. Total mess. I'm male, and have pics of my abdomen that make me look like I was ready for lamaze, and labor and delivery. Abdominal swelling not due to weight gain.

Prior to this 2000, "armmagaeddonoid recrudescence" and/or re-infection, I too, went to a hospital emergency room in an extremely well-known, lyme-endemic area of New Jersey, and, despite evidence/documentation of lyme,and thorough history given, it was patently obvious, even to the comatose, that the staff were hell-bent on spinning this into some kind of medico-psychiatric diagnosis in which lyme played absolutely N-O part; and, only those psychiatric conditions for which they could mercenarily reep the highest financial renumeration. I countenaced a quiet-confidence, and ocular dialect that belied their brains squirming like toads as to "... how can we get the lyme-infectee outta here.."; since he has come to us with compelling objective laboratory documentation,including photographs, and is clinically lyme-symptomatic, "what psychiatirc diagnosis can we spin this tick-borne infection into, thusly, and hence filling a bed, in the psych ward? Uh, we've been losing money on that unit, and are jugling 10 lawsuits regarding this unit, alone."
I considered going along with this patent pretension to "getting at the bottom of whats h-a-p-p-e-n-i-n-g..." by allowing them to admit me to the pscyh unit for "o-b-s-e-r-v-a-t-i-o-n," and a diagnosis of some polysyllabic pseudo-latinate pscyho-bablic import; i.e., bull****. Having engendered their depraved hostility with photos, and pertinent comprehensive history, and insistence that I be appropriately treated,I figured that they thought I could use "a few volts", or insulin shock, or a major psychotrophic drug that would induce profound degradation of the frontal cortex("shut 'em up for good," a real 'veggie'); "after all, lyme induces subcortical degradation of white matter. So,with two parts of the brain gone in one treatment, we're ensured a hefty renumeration. He'll never be back to sue us, cus he won't be able to."
So, they gave me 1 week of doxy, a referal to a rheumatological clinic for the felonious cancer-inducing methotrexate "treament," and finally, with the attitude of "don't let the door hit you in the ass on the way out!"

Lymiecanuck, if you "voluntarily" go into a psych unit, you can rest assured, or un-assured as the case may be, that you may NOT come out for a v-e-r-y l-o-n-g time; and they will bankrupt your family in the process. I assure you. This did not happen to me, but I've heard of it time and time again. If you've considered going to the psych unit and getting whatever diganosis they want to give you, in the hope that you will get an antibiotic, then do NOT do this! It will never happen.

This has been a horrendous time. Hang in there.

Good Luck,
dq

Thanks for the replies. I did stop the prevacid cause I couldn't afford to buy more, and I think my stomach acid is not right despite barium showing lots of gas.

Week before last, I was in a lyme rage, tearing chest pains and felt awful, and was arguing with husband, cause he doesn't seem to be on my side. I walked across town at 5:30 in the morning (this is shameful), and told emerg, I was suicidal. Nurse said, the intake worker doesn't come in until 8 am, but you can wait around and see a doctor.
I said thanks anyways - but I have seen a LOT of doctors this year.

I am quite embarrassed about it, but had enough. We don't pay for this here, Canada has free healthcare if you can get it.

So I went to another hosptial and spoke at length with social worker, and she set up home visits with a nurse to talk to so I can focus more on other things than lyme rages. I didn't mind it, but feel it is a bit reduntant now, but she will continue to come for a bit. It does help to talk to someone but if they don't understand the concept of the situation it is harder.

Anyway, I spoke with a shrink, who was quite heartless and told me I was having paranoid delusions about being sick, despite being to that emerg, like 10 times in the last few months. If nobody thought anything was wrong I wouldn't have been sent for ct scans.

Back to GI problems. My amaylase was low on last testing with blood in urine sample, so digestive secretions could be involved someone pointed out, could mean other things too. Being rechecked for urine again. Sometimes I am sure I don't have stomach pain lately, just becasue I can't feel it.

I won't be going to hosptial like that again. Sometimes you just had enough and don't know what to do anymore and get stupid senseless ideas in my head, that really is just more harmful to me in the end. And people miss the point, that it is someone who has had enough.

Interesting that this was week proir to full moon. I didn't check the calendar at the time, but tend to have a lot of trouble with frustartion, symptoms etc at this time.

Lymiecanuck

I also blew up like a balloon at first tick bite, then lost 10 pounds overnight. For once, it was not pleasant to have a fetching figure. This symptom went away after being on a killer abx regimen (up to 5 at one time). When I can do yoga, it also helps loosen up the abdomen area and get it back into proportion.

My liver enzymes shot through the roof after taking minocycline at abnormally high doses (it's the one abx my doc didn't know much about), and then replacing it with omnicef, which works great but is known to elevate enzyme levels. My doc actually laid down the law on this one and said, if you want me to keep prescribing abx, you have to take Dr. Zhang's Hepa 2 herbal formula. It's kept my enzyme levels normal for a year now. If you read Zhang's website, you will see a list of the ingredients, though I can't vouch for how well they work on their own.

People on IV rocephin often take Actigall, a prescription medication that slows down sludge build up in your gallbladder. Rocephin users often end up having their gallbladders removed, even if they manage to attain a nearly fat-free diet. Before I took Actigall, I had agonizing gallstone pain.

For yeast, I take probiotics with 16 billion lactobicilli(?) per capsule, broken cell wall chlorella, nystatin, and sometimes an over the counter supplement called lactoferrin. A lot of people swear by whey products like Immuocal.