posted
I have been in treatment for Lyme and co-infections for 2 years now, and been on IV doxycycline for one year. I would say that I am only 30% better at this point.
I know my co-infections still need appropriate treatment - they have all been treated but not for long enough, but my problem is that I have such severe gastritis that I cannot tolerate any more oral antibiotics at the moment.
I have lots of symptoms and would like to know which infection they correlate with, if anyone can help me with that. I am going to get a second opinion this month as well. These are some of the mystery ones to me.
1. I have this very wierd symptom where my hands get hot and turn bright red. Often the tips of my finger are red all day and my hands flare with this redness on and off. My LLMD says that Lyme and Babesia can cause this and its from inflammation but I was wondering if anyone else had this symptom and knew what it was from?
I have no improvement in it with treatment so far. Its not the doxy that is causing it and its not Raynauds. Both have been ruled out, as well as erythromyalgia.
2. I get two different types of neck pain. One is centered in the vertebrae with a pressure headache just above it at the bottom of the skull. It throbs and comes and goes all day long.
The other type is like a stiff neck where the right side of my neck is affected, and when I get this symptom, I usually have sharp pain following the curve of my scapula which radiates all the way up my neck.
This is extremely painful, and I have to get a pain cream compounded for me to help with this. I am not sure which infection is causing these two different types of neck pain or scapula pain or if its different infections!
3. Severe gastritis, which does not seem to improve when I come off antibiotics. I am taking 400 billion probiotics (Custom probiotics), DGL, marshmallow, L-glutamine, Pepzin GI, and am gluten and dairy free. Plus I just started an over the counter PPI after Zantac stopped working. I have been off oral abx for 6 weeks now and my gut still feels terrible.
I do have Bart which is still very active (have Bacillary angiomatosis) in spite of multiple months of antibiotics, so I am not sure if its Bart that is complicating the gastro symptoms. I had stomach problems long before going on abx, unfortunately, but have never tested positive for H-pylori in spite of multiple endoscopies.
Of course, I have tons of joint pain, muscle pain, bursitis, tendonitis, sweats, teeth pain, facial pain and other symptoms, but the gastritis is really preventing me from getting oral abx and moving forward and hitting the co-infections.
I am feeling really stuck right now and down in the dumps!
Thanks for responding and I am sorry this is so long.
Posts: 187 | From Connecticut | Registered: Jun 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"have never tested positive for H-pylori in spite of multiple endoscopies."
Have you had a blood test? My blood test was positive when other tests were negative for H pylori.
"my hands get hot and turn bright red"
Maybe a nickel allergy? If you handle coins or keys or zippers it can make your hands turn red if you have this.
"Severe gastritis, which does not seem to improve when I come off antibiotics."
Do your probiotics contain FOS? FOS can feed bad gut stuff.
"A few supplements you may be taking can be counterproductive to the treatment of dysbiosis and are mentioned here so you can avoid them. Iron supplements feed unfriendly bacteria and protozoan parasites.{8} Fructooligosaccharides (FOS) also feed some unfriendly bacteria, especially Klebsiella pneumoniae, hemolytic E. coli, Bacteroides species, and Staphylococcus aureus.{9} As mentioned above, protozoal parasites “eat” bacteria, so your doctor may advise you to avoid probiotics during the course of anti-parasitic treatment. Cysteine, glycine, and glutathione, while important antioxidants, can stimulate the growth of yeast in some patients with candidiasis."
I have never had a blood test for H-pylori because the biopsies have always been negative, but I will ask my doctor about ordering a blood test.
My probiotics do not contain any FOS as I am aware that FOS contains sugars. Also I have had many stool tests by good labs that show no dysbiosis. I am on nystatin daily and my stool tests show that candida is not a big problem from the stool tests. I also have shown no parasites from the stool tests as well from Doctors Data and Metametrix/Genova.
My last endoscopy showed mild gastritis but my symptoms feel severe, like I have an ulcer!
As for the red hands, my doctor said its a cytokine storm that is going on in my body which causes imflammation and blood vessel changes causing my hands to go red, but he says this is a direct result of the infections. Its just so bizarre that I was wondering if anyone else on this forum has had this reaction.
I was also evaluated by a hematologist for this issue and he ended up agreeing that it was due to a cytokine storm. However I have never heard of anyone else with this symptom from Lyme and Co. so really was hoping to see if others had it.
It comes randomly and is not linked to touching anything, or eating anything like an allergic reaction.
Thanks once again for you reply - much appreciated!
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I may be off base here (and I'm sorry you are doing poorly)
You said you are on IV Doxycycline - are your hands getting ANY sun exposure? Even through a car window?
I was on oral Doxy, and sun coming through my tinted car windows (really) burned my left hand, but it was not typical
looking sunburn- it was bright red and hurt like heck- for a long time. Also the sun got my nose while on Doxy despite my precautions (sunny CA in winter)
and I looked like Bozo the clown for 6 weeks, then it peeled for another few weeks.
Doxy and sun came to mind about your hands. Hang in there---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Sorry you are experiencing these symptoms. I am on the Byron White formulas and experiencing some success. I have had to go off of antibiotics due to high liver enzymes and gastritis off and on. My stomach is still not great but so much better. Just a thought for you
Posts: 238 | From new england | Registered: Feb 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that you take L-glutamine. While a tiny, TINY bit can be helpful to gut lining, there is a very fine line between what is tolerable regarding excitatory symptoms / all over pain for someone with lyme.
L-glutamine can CAUSE all kinds of symptoms to be much worse. Detail here:
See post here: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be so wrong for us when added as supplements, beyond a normal dietary level - and even that might need to be examined) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you gluten-free? To be sure nothing is sneaking past you, See the "Hidden Sources of Gluten" in the set below. Gluten & also Excitotoxins in foods can also cause so much all over body pain, and can go right for the nerves, anywhere.
Inflammation (leading to pain) can also come from all this:
Be aware that integrative doctors can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first. Some have learned on their own from experts in the field. There are many ways to acquire knowledge and most are eager to share basic details about their training. You want someone with a deep knowledge.
Some of the specialities above may not actually treat lyme yet, for things such as physical adjustments, it is just good that they are also LL, at least to some degree (to know never to suddenly twist the neck or spine).
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients (UPLEDGER, FELDENKRAIS, etc.) . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say " such severe gastritis that I cannot tolerate any more oral antibiotics at the moment." (end quote).
In that case, a LL ND may be of help with other ways. And:
My hands turning red is not related to the doxy. My doctor has seen it and he has ruled that out. It happens repeatedly and in between flares, my hands look normal. It happens even inside the house and at night when there is no sunlight to trigger it.
Its very strange but its not like a sunburn at all and it doesn't hurt.
Posts: 187 | From Connecticut | Registered: Jun 2013
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Glad to hear your stomach is better off abx. It may be time to take a complete break for me. Just waiting for my second opinion and then will make a decision.
Posts: 187 | From Connecticut | Registered: Jun 2013
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I did not know that L-glutamine could be bad for Lyme. I will look into that further. My ND prescribed it for me.
I do see an ND and a DO for additional medical support apart from my LLMD, so I am in good hands that way. They are both Lyme aware.
I am gluten free and have a very clean diet.
I am just wondering how much the Bartonella is playing a factor in my gastritis as opposed to the antibiotics.
Thanks for all the info!
Posts: 187 | From Connecticut | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
My hands used to do that--red and hot (gone now). I thought it was MCS related, but not too sure as MCS overlaps with other things.
It sounds like protomyxzoa may be one of your co infections (also babs, bart, etc). I have similar symptoms. You have to manage proto or progress will be slow, with lots of backsliding. Many people don't even know they have it. It's hard to distinguish, but worth altering your diet to see if you have it (easiest way to tell).
I still wouldn't give up on h pylori. Tests are just tests (inaccurate).
I also would treat for parasites. Just because they are considered the best tests doesn't mean much. They are incredibly inaccurate and should not be relied upon.
When we are tested for lyme and company, what are the odds there's proof of infection in that vile of blood? The same thing happens with testing stool samples for parasites (they are easily missed).
Check out THE PARASITE WARRIORS THREAD. It has lots of info and is worth visiting.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with Catgirl!!!! Parasites are the missing link for many who have been chronically ill. Dr. K. treats parasites FIRST and Lyme and Cos SECOND.
The parasites are protecting the bacteria which makes killing it very difficult. Please check the Parasite thread and symptom list Catgirl has suggested.
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 already spoken to my LLMD about the protomyxzoa and he does not believe in it nor will he treat me for parasites as all my tests for parasites have been negative.
I know that your diet has to be low fat for Protomyxzoa - I have a very low fat diet and it makes no difference to my symptoms.
I will check out the info - thanks so much!
Posts: 187 | From Connecticut | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
At some point, some of us have come to the conclusion that our docs don't know everything (but they are still good, some even great docs). Originally, they were trained to follow western medicine, and then eventually converted to lyme docs (they or someone they know got lyme). IMO, they still have a hard time shaking their western med training mode as as end all, be all. That doesn't mean they are bad. We are lucky to have them.
They are also under the gun to follow the current evidence based medicine guidelines, so their hands are tied, even though we all know that model inevitably misses stuff (lyme and company). Combine this with the faulty tests, and you can see how people are left untreated.
I knew in my gut I had them. Going two steps forward and three steps back forced me to open my mind to consider other things. I realized that there had to be something else dragging me down. Thankfully, we have people like Gael on here who are steadfast in getting the message out.
I didn't accept a negative parasite test, followed my gut, and treated with herbal products anyway. Once I had proof, then I was treated. If I knew years ago what I know now, I would have treated for parasites. IMO they are a major key to lyme and company.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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