This crap just never seems to stop. I have been fighting Lyme,Babesia Microti, and Bartonella for over four years now and have just recently found out that I also have celiac disease, Erlichia, Blastocystis, Round Worms, Aspergillus, and Babesia Ducani and may have had them all that time as well. I also recently have been diagnosed with Lyme related Hashimotos Sinthryoiditis and Nuero-Lyme. My immune system antibodies are $h!T so I catch every little bug that is floating through the air. I also occasionally struggle with bouts of psuedomonas in my throat which causes my throat to be wicked sore. AHHHHH! My symptoms are extreme and excrutiating pain throughout my my entire body and head, fatigue, and nuero (difficulty concentrating, bad memory problems, frequent numbness in the bottoms of my feet, trouble retaining certain information that has just been presented to me, word block and finding issues etc.) Now, medication and supplement wise, over the past 4 years I have taken: Doxycycline (in the form of Doryx), Zithromax, Zithromax and Mepron, Mepron, Cipro, Levaquin, Rifampin and Bactrim, Plaquenil, Tetracycline, IV Rocephin, Vancomycin, Amoxycillin, Biaxin (gave me heart palpatations as well), Keflex, etc., Dr B.'s (Formerly in the hamptons, NY) complete vitamin protocol, vitamin C and salt protocol (currently taking), Samento, and a bunch of other stuff that I can't remember. To sum it up, I'VE BEEN THROUGH HELL! I am presently taking the vit. C and salt protocol, Doxycycline, freeze dried garlic, Nystatin, acidophilus, artemesia, and ginko. Any NEW ideas as to where I go from here? I've seen all the best doctors in the country, and my case seems to stump them all. This board diagnosed my Babesia when these doctors didn't, so I have a lot of faith in all of you who are suffering as well.
Your help is as always greatly appreciated, Thanks K-lyme
Posts: 227 | From CA | Registered: Apr 2004
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
How are you doing on the detoxing side of things? Is it possible that you need to pull back on some of the remedies? Seems like you might be taking a lot. I can only do one or two at a time, and I have a lot of detox remedies always on hand when I start to feel congested or headachey, etc.
Favorite detox remedies... hot baths to sweat it out, chlorella, foot detox baths (can get foot detox pads), Bi Yan Pian for sinus congestion (take like candy sometimes). Other people do saunas or lymphatic drainage massage.
What does your LLMD say about the lack of progress? Very sorry you are still going through this nightmare.
Note that thoughts given are based on personal experience only, not medical advice.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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My many LLMD's that I have been fortunate enough to see have a very limited to no idea as to what in the hell is going on with me. I am not responding to treatment and I keep coming up positive for new things all the time. There are a few antibiotics that i haven't tried yet, so I will be trying those shortly. I am going to go to the health food store today and I will definitely look for the remedies that you list. I have definitely read that when the body isn't detoxing itself properly that symptoms can be exacerbated, I can't believe I didn't think of that! Thank you very much for caring and taking the time to respond Posts: 227 | From CA | Registered: Apr 2004
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I sometimes wonder if we would make more progress if we focused AS MUCH on boosting our own immune function as we do on finding the perfect ABX . Ultimately , if our own immune system is not effective , the drugs may not accomplish what we hope for . Perhaps this is simplistic ( overly ) as I do not pretend to be one of the " brighter bulbs " in the box .
I may be very wrong , but i suspect that most of us here have some sort of immune system defect , because so many do not make lasting progress even with the most potent and expensive drugs . It may well be that lyme bacteria is a factor in a disregulated immune system , or perhaps genetics.
I can throw out some ideas that you can research that have been reputed to help ABX therapy and fighting infections:
N acetyl cysteine and selenium ( increase glutathione level )
Glutathione injections ( compounded ) and not too pricey
Glyconutrients ( such as ambrotose by mannatech , though there may be cheaper brands ) . These have been proven to raise NK cell counts in studies , and I know a doc in WA state who is seeing GOOD benefits combining them with ABX . You can PM jarjar here and he can validate and explain more . He takes them too and is impressed with how much better they seem to make his ABX work .
High doses of VIT C - powerful infection fighter , and magnesium another major infection fighter .
Last : A great diet . We ultimately have to make the "bullets " our immune system has to fire at the enemies .
I also think the detox suggestion is very wise . I find simple things like chitosan, psillium etcc make a big difference .
posted
The one thing I noticed when reading your list of meds is that you have not tried either Flagyl or Tindamax -- maybe one of those would get rid of the round worms?
With so many infections I would try to tackle them one at a time. Start with the parasites and at the same time make the change to a gluten free diet. This should help strengthen your body so you can start healing.
Next I would probably try to get rid of the Ehrlichia.
Hubby does not have quite as many coinfections as you, but has been sick 6 years and still is a long way from well so I can relate to the frustration.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If you haven't already, you will want to look into endotoxins and how to get rid of them. My LLMD uses cholestryamine. If you have trouble excreting them from your body, you can remain ill indefinitately. At the least, they will make you feel terrible. Look into Ritchie Shoemaker information on cholestryamine and actos.
The next thing to consider is getting rid of metals. When bugs die, they release metals. If you have not been taking something to bind them and remove them from your body they will deposit in your brain or other areas and make you sick. If you haven't been working on this during your treatment, you should seek the advice of an expert. Someone who is familiar with how to handle metals. Even if you have been working on metals you may still need to do more. Metal toxicity can mimic symptoms of lyme.
Another area of consideration is dealing with the aftermath of a potent neurotoxic substance called quinolinic acid. Also, protecting your brain from quinolinic acid until the infection is over. I'm no expert but Buhner talks about it in his book "Healing Lyme". He states that even if you get rid of the infection, the brain needs specific therapies to help with regeneration. He has a cognitive dysfunction protocol in his book. Read in his book beginning on page 48 - post lyme disease syndrome.
Then of course, one of the most important things to deal with are the other infections that you have which will make it very hard to clear lyme not to mention make you feel very bad.
I'm sorry that you are so ill. Keep looking for answers. You will eventually get better. I'm not a doctor, these are things I've learned over the past few years. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Thank you for your responses. Bea, I have been on Flagyl many times (one of the antibiotics I forgot to mention), and its done nothing. Also, I have been doing just as you have suggested. I also have been advised that those darn parasites interfere with antibiotic absorption, so that could also possibly be another reason why I am not getting well. I will definitely mention and ask my LLMD about getting rid of my co-infections one at time. IT SURE MAKE SENSE TO ME! Anne, thank you for your suggestions. I definitely agree that you have to have a good foundation in order to fight these little jerks. TerryK, After I saw your reply, I immediately went onto Amazon and ordered the Buhner book. I am very interested to see what it says about the metals. I have been on cholestyramine before for about 2 months and it did nothing.
Thanks again! Posts: 227 | From CA | Registered: Apr 2004
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posted
Celiac disease causes malabsorption, which can affect meds. So, even though you've taken all those meds, you weren't necessarily absorbing them all.
I see Dr. H in NY. He tests all his patients for celiac, so I know it's something he understands, at least on some level. His assistant told me he tests for it to rule it out because the symptoms are so similar. I would see him or another LLMD as you go gluten-free to treat the Lyme and coinfections.
You might feel somewhat better when you are on the gluten-free diet for a while. Check out celiac.com ... they have a message board. I also am gluten intolerant.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:TerryK, After I saw your reply, I immediately went onto Amazon and ordered the Buhner book. I am very interested to see what it says about the metals. I have been on cholestyramine before for about 2 months and it did nothing.
The Buhner book doesn't talk about metals as far as I know. It talks about many other worthwhile things, like I mentioned in the paragraph where I mention the Buhner book. If you are specifically looking for info on metals and you don't want to buy the book, you can probably still cancel the order.
As far as using cholestryamine for 2 months and not noticing a difference - I'm not surprised. Did you do a visual contrast sensitivity test? If you have a lot of toxins from a long term infection and you are mopping up newly created toxins as you kill more bugs, you may not be reducing your overall load that much. My LLMD pointed out to me that you are continually creating new toxins as long as you are killing bugs. I think it may take a long time to clear out years worth of these toxins.
Again, I'm not a doctor. I have spent the better part of the last 2 years researching these issues. Keep looking and studying in order to understand all the issues because there are many. Use the search facility here and read the newbie links.
Wish you the best. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Everyone has good ideas to explore. With regard to the immune system, yes, it's very important to strengthen it.
Before I knew I had lyme, I had my NK cells tested, and they came back very, very low, below normal. Recently I was retested (it wasn't the CD 57 test), and I'm now in the low normal range...making progress.
I took Host Defense, a mixture of medicinal mushrooms, and then switched to Maitake alone. Now I'm going to switch again, and try just the Maitake D-fraction. My doctor also wants me to try ProBoost, it's for the thymus gland which makes T-cells, part of the immune system.
Some people use other herbs for the immune system.
Have you been checked for hypercoagulation? The fibrin that builds up in the bloodstream in people with lyme, can block the absorption of medications. For that I've used lumbrokinase, the Boluoke brand.
Hoping you get some relief soon. Take care.
Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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posted
K-Lyme, Are you on a gluten free diet? Many of your symptoms can be explained by untreated Celiac disease.
Neuropathy and the fuzzy brain feeling are common.It would also cause problems with your immune system. I have Celiac, Lyme and chronic migraines as well as many co-infections.
I have treated mostly one thing at a time and it seems to be working.I know it is hard to maintain a strict diet when you feel so poorly, but I would start there, then treat others. Jusy my 2 cents. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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