posted
I have hesitated to write about all of my recent health challenges until I could process them myself. However, I am not sure what to do at this point.
Dr. J in NC is my LLMD. He has been unable to prescribe abx for me because of sanctions prohibiting it currently. He believes he will be awarded a research grant late this Spring allowing him to use his own protocol which has had much success. I have stayed his patient because I want the best and he is so brilliant.
I have considered using the Buhner protocol until I am able to start antibiotics. That was going to be my next step in treatment.
However, in the last couple of weeks I found out some new things about my medical condition. I had an abdominal nuclear scan, an ultrasound, X-rays, a colonoscopy and an endoscopy....all by a GI doc whom I was referred to by my PCP when I complained of a full feeling in my abdomen and sometimes difficulty breathing.
Results are: 1)a stomach full of clusters of ulcers 2)a hiatal hernia 3)Barrett's esophagus (not good - precancerous) 4)a fatty liver with a medium cyst attached 5)hardening of the arteries
The GI doc told me I could no longer take ANY NSAIDS.....I had been taking 3 over-the-counter naproxen every night before sleep. Without the naproxen, I have been awakened almost every night with leg, knee and hip pain that interferes with my sleep. When I try to get out of bed in the morning, I am almost unable to walk on heavy and sore legs.
GI doc said that I should not try to add anything to any regimen that I may have right now. I told him I was considering taking allicin (garlic) and he said that might be alright but he didn't want me to do any cleanses now.
The diagnoses pretty much eliminate my ability to take oral ABX when and if I can get them prescribed. The shape of my liver prevents me from introducing anything else and I would think that would include IV ABX which is what Dr. J says I really need.
Without my pittance of a pain reliever/anti-infammatory, I am suffering so much. At night I take Seroquel for sleep after Ambien no longer worked (have gained 60 lbs. since starting it and would like to find alternative.) I take hydroxyzine to help with interstitial cystitis and odd rashes and itching. I take cyclobenzaprine for muscle spasms and generic Prilosec for my gastro problems. I also take Theralac every night.
Before breakfast, I take 88 mcg. of Synthroid although I still have trouble with hypothyroidism. I take another generic prilosec, Effexor XR for depression and diazepam for neuro shakes. I don't have a test to prove it but I am almost certain that I have neuro-Lyme.
So given all the above information, what would you do for treatment and for pain control???? I have been sick for many years, diagnosed last year with Lyme with two separate positive WB's and have had no treatment. I am becoming more and more ill. I rarely leave my home or drive. I have sensory overload a LOT.
I am seeing my PCP tomorrow to go over my GI test results. This is a conservative guy but Dr. J did call him and they discussed starting me on abx after my next visit with Dr. J. I am now wondering if I should even bother seeing Dr. J any time soon. My PCP would never prescribe ABX for Lyme on his own.
I don't know what to ask my doctor. I know I need pain relief but don't know what kind is best and I sure hate adding another drug but I can barely walk now. The GI findings are pretty self-explanatory so I doubt my doc will want to do anything else about those sx. The fatty liver bothers me......should I ask for a liver panel? The GI doc didn't offer to do one and when I asked him about pain relief he said that wasn't his specialty. Duh!
Would a detoxing help? What kind? Needs to be gentle I suppose. I need to reduce my toxic load. Well, this has gotten really too long. Thanks for reading and for any suggestions or information you might have for me.
My best, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Cobweb
Unregistered
posted
My thought is prioritize with the doc and then take One Thing at a Time. I know I know, a lot of us are fighting battles on many fronts at the same time.
Good to know Dr. J is able to consult with the doc you are seeing tomorrow. I flushed my GI doc down the toilet-worthless.
Next time don't wait to post your concerns- anxiety can make things seem worse than they are-and they're already bad enough.
I can't give you any treatment advice-except remember to breathe-just breathe.I hope things will not seem so overwheming in the morning.
Hope this helps. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
TNJanet,
Your post is a really good example of how much more than lyme can be going on with us and we and our doctors should not become so focused on lyme that we fail to see anything else.
If your ulcers are caused by the helicobactor pylori (HP) bacteria, then those ulcers are also pre-cancer. Stomach cancer. Very serious and needs antibiotic treatment.
Do not fire your GI. He does know what he does know. Don't fire anybody. Do look for someone who can also help you get your terrain (your body) back in balance. That will involve treatments to kill any fungi and bacteria but also AND MOST IMPORTANTLY diet and supplements necessary to heal your body. If medical science ever gets it really right, they will learn that we need both abx to kill very dangerous microbes such as the HP bacteria AND a proper diet AND natural supplements designed to reverse the deficiencies in our body until our body is once again in homeostatis.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
quote:I am seeing my PCP tomorrow to go over my GI test results.
Janet, how did it go?
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Janet,
and thanks for posting those Carol (thus saving me the trouble of finding them again.)
So far the Zinc Carnosine seems to be fine. I'm only taking it about 2 weeks. It has no side effects, as far as I can tell, and isn't terribly pricey.
It's being used instead of Prilosec (or something of it's ilk). Subduing stomache acid has worked against me in the past.
I am taking it for suspected H. Pylori. I do have an hiatal hernia but think it doesn't bother me. I have Hep C and usually a mildy enlarged liver.
It couldn't hurt to have a liver profile run. At least you get some idea if your liver functions are in the normal range. Mine almost always are... even on Meds.
As for IV, some are metabolized primarily in the liver and others not so much, I think. So, don't rule them out as possibilities. Actually, I think?, Amoxy, Prilosec (or this Pepzin Gi stuff) and another ABX are used for ulcer treatment.
Blah, blah, blah, absolutely no medical training here and all. I'm not sure any of this helps but I do hope you can find something for the pain and get the GI stuff under control. I don't believe it's undoable, but what do I know?
I do hope things start resolving and looking up soon.
pssst... email TC, she's way smarter than me.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Janet -- hubby had nos. 1-3, with LD and coinfections. Also more than 12 precancerous polyps in his intestines. He was in extreme discomfort, could hardly keep food down, and couldn't take oral abx.
We treated the ulcers with flagyl and peptobismal first, for 3 weeks I think, and he took Prilosec for the acid reflux. Then he took abx for c. difficile. Can't remember what it was, but it was also an abx used for Bb. Did not take any other abx at that time. Then did the LD/Co tx-- oral and IV, I think, at the time.
His GI doc had thought he'd have to have the hiatal hernia surgically fixed, but the ulcers, polyps, and Barretts all resolved over time with this tx and the hernia seems to be a non-issue now if he eats properly and doesn't lie down immediately after a meal . It was amazing what a difference it made in his overall helth, although he still had Bb and co.
Shortly after all this he quit all abx and did the Zhang protocol. This did nothing at all for the Bb, but seems to have resolved all remaining gut problems and yeast issues. Zhang was very heavy on the garlic.
Hasn't had any gut problems since.
His very first noticeable LD/Co sx were stomach and gut problems.
Not making any recommendations--just our experience.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
As Trueblue said, some antibiotics (some are oral and some are IV) are metabolized and excreted primarily through the kidneys, not the liver. This is something you can discuss with your LLMD.
My liver is always an issue because of Ketek damage so I go through these discussions on a regular basis with my LLMDs when choosing antibiotics. And yes, I'm on IM Bicillin and that's already been suggested because it avoid the GI tract.
I had a hiatal hernia long before Lyme. It's quite common so I wouldn't go into a panic on that one. And as others have said, ulcers can be treated, Barrett's is important because it can be pre-cancerous, but I'm guessing the GI doctor will probably put you on proton pump inhibitors for that and monitor you closely with endoscopies.
I've read that fatty liver is actually quite common in our society due to diet, toxins and all, and I would guess is fairly common in Lyme patients. You may NOT want to push yourself in terms of detox and all until you've had a chance to discuss your liver's detoxification capabilities. Mainstream GIs usually don't do those tests, but the more alternative practitioners and many LLMDs do the Great Smokes/Genova liver detoxification profiles.
I have to take medication for myoclonus to help me sleep. Otherwise, I basically have to use the cry and scream technique for dealing with pain. So I'm afraid I'm not much help.
There is a topical cream I use for joint pain that's been the only thing that helps me. It's Topricin and you can get it on the Internet or I think at a few health food stores.
Please do post any time you need support because all of this can be so overwhelming. It's not fair to have so many issues at once.
You'll be in my thoughts.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymemomtooo
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posted
Janet, I am sorry that things are so bad. I am not a dr so don't have any great suggestions..
But I do know that the hernia is probably a big player in the acid issue and the esophagus pre-cancerous issue. If you can calm that down, you may have some healing. I ended up getting surgery for mine during some stomach surgery.
Also someone said to not lay down soon after eating. It is also important. I did not eat after 5 and then the acid reflux was generally ok.
If you smoke or drink, all of this can be much worse. Also sodas can make this all worse. I have not had a coke for almost 4 years.
My first thought was could rife help all of this. I do not know but it would be something that you might be able to research.
I also think if you could find a slow way to help detox the liver, that would be helpful. Again do some research. I think chlorella is fairly benign and helps with detox but not sure if it actually helps in the liver.
Gigi has many posts in the archives on neuro toxins or heavy metal detox and she may have some good explanations in the top search box archives. I think she explains chlorella and a few other things that are helpful.
And there might be a lot of healing if you can get your ph out of acidic.
I am convinced that God does not make junk, we just have to find the right path back to good health. Good luck. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again, Janet,
I just remembered that when I saw a holistic M.D. years ago, pre-Lyme, he recommended that I elevate the head of my bed by four inches. That was to help alleviate the GERD/reflux from hiatal hernia or from dietary issues.
You can put a board or bricks or something like that under the head of the bed. It works better than just propping yourself up on pillows. It really doesn't feel all that weird once you get used to it because it's just a few inches.
I know you don't need to put any more stress on yourself, but have you ever considered the gluten-free diet? It really cleared up a lot of my GI issues.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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luvs2ride
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posted
H.Pylori Ulcer is also pre-cancerous and really needs to be ruled out. I had this in 2004 and a round of Prev Pack cured it right up and I felt incredibly good afterward.
I recently began showing some signs again and am in the process of testing for this. The doctor put me on Nexium for 1 mth to see if it settles the symptoms, then he will take me off and see if they reoccur. If they do, I'm off to the GI doc for a biopsy. In other words, they are really slow and reluctant to give out abx for this as well. It really isn't just lyme that they don't want to treat antibiotically.
Since I've had it before, I certainly want to rule out the possibility I have it again. It is as serious a bacteria as lyme and behind many illnesses.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Tincup
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