My Progress! What do you think?

LAB TESTS

Complement component 4 (C4a) (needs to be freezed) 134 OKAY
Cyclic Citrullinated Peptise (CCP) 4 OKAY

Matrix metallopeptidase 9 (MMP-9) 263 OKAY
Vascular endothelial growth factor (VEGF) 25 LOW

Anti Diuretic Hormone (ADH) 0.8 EXTREMELY LOW :Medication to replace, Desmopressin:
Transforming Growth Factor-Beta 1 (TGF-B1) 11813 VERY HIGH :Medication to lower, Losartan:

HLA by PCR (genetic test) - 4-3-53 = MULTI SUSCEPTIBLE / 15-6 = CHRONIC LYME
Plasminogen activator inhibitor-1 (PAI-1) -5.6 OK

Melanocyte Stim Hormone (MSH) - 17 VERY LOW
Vasoactive Intestional Polypeptide (VIP) 43 OK

Eosinophilic Cationic Protein (ECP) 11
CD57 - 36

Nasal Culture - STAPH, Resistant to Penicillin-G, Clindamycin, Erythromycin.
http://www.healthhype.com/lab-tests-for-staph.html
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Treatmeant:
Low Glycemic Index, Low in sugars, Whole grain wheat only, and Organics.
Meds are Losartan, Metoprolol, Desmopressin, and Welchol (detox biotoxins), LevaQUIN,
Gabapentin, Chlorella, Probiotics, Krill Oil, 5,000 ut Vit D, Jolessa, Percocet, Flexiril Promethazine*, Zofran*

* = Occasionally, not daily

http://www.survivingmold.com/docs/biotoxinpathwayritchieshoemakermd.pdf
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Symptoms:
Pain in feet and ankles upon standing/walking, Flu-like feeling, Extreme blotchy flushing/rash on different parts of the body, especially face, chest, and back (releasing histamine),

Poor circulation, Sleep disturbances; possible apnea, Insomnia, Back pain, Different types of chest pain, Runny nose, Sore throat, Sore jaw, IBS symptoms, Muscle pain, All over pain; burning pain, shooting pains, sharp pains, dull aches,

Back pain; lower-mid-upper, Random trouble swallowing, Severe goosebumps, Palpitations, Passing out, Near passing out with loss of hearing and sight, Talking aggravates symptoms sometimes,

Lower neck pain, Lots of nausea and occasional vomiting for no reason, Excessive fatigue, Occasional stomach pain, Sensitive stomach to touch, Problems urinating, Sickly weak arm,

Stiff and achy fingers and wrist, Random muscle twitches, Arthritis in spine, Joint pain in elbows, hands, knees, ankles, Forgetful/Difficulty concentrating/Mixing up words/Using the wrong words,

Dry icky mouth, Red swollen knees that are hot to the touch, Unstable pupils (fluttering), Extreme bloating, Shortness of breath, Horizontal nystagmus, Swelling in feet, Pooling from abdomen down and in arms (POTS),

Shaky/Tremors/Chattering, Red hot ears (histamine?), Reflux, Daily voice loss, Low libido, Headaches/Migraines, Numbness Carpal tunnel in arms mostly in non dominant hand at rest or when holding something,

Sharp random spikes of pain, Burning muscle pain, Dizzy, Overheated, Blurry vision, Frequent urination, SVT/IST, Fluctuations in BP (POTS), Ringing in ears, Exhaustion even after sleep,

Occasional cough, Sensitivity to light. Waking up gasping/coughing, Pain in fingers, Slight swelling in face occasionally, Occasional swelling and/or pain under chin where lymph nodes are,
Sore/droopy left eye has happened a few times, Seeing sparks of blue light that are not from headaches and are seen with open and closed eyes.

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Notes:
Suspected to have Lyme and Bartonella based on symptoms and indirect labs.
Symptoms began nearly 10 years ago, tick bite was 14-15 years ago. Highly susceptible to Lyme and other infections.
6-9 months of antibiotics and other treatments should improve symptoms. Hyperbaric chamber may be an option.

Post Edited (Emichuu) : 4/11/2012 4:20:34 AM (GMT-6)

Showing my progress and I'm asking for opinions if you don't mind the long read, does all this look right? I just want to make sure I'm on the right path here. Sorry for the late reply, I've been in the hospital sick with pneumonia, bleh.

I am seeing an LLMD, he's suppose to be the best in the East, has been highly recommended and has appeared in a Lyme documentary. I just received some more test results tonight. CD57 is 36, ECP is 11, and my cortisol tests show that I have a severe Adrenal Insufficiency. I am fully aware that some of my medications are only treating the symptoms as is my LLMD. My pain has been really severe so I'm going to have to stay on the pain medications until it gets better, if I don't then I find myself screaming and tearing myself up with my nails, it's that severe and I've tried a lot of natural pain relievers. I also have an acupuncturist who is also knowledgeable with herbs and natural medicines. Once I have an overall diagnosis then I will have more natural medicines. The only reason I wasn't on any antibiotics yet was because we didn't know which ones to use and had to wait for more tests. My LLMD believes in a combination and also uses natural means in treating Lyme and uses Silver with some of his patients. He uses the shoemaker blood panels to rule out mold and for indirect testing for Lyme Disease.

Metoprolol is to keep my heart rate down, without it my heart rate is dangerously high. I have tried medicines from my acupuncturist but it wasn't able to control it. Losartan is to bring up my TFGF-B1, Desmopressin is for my low ADH, Phenergen/Zofran is only occasional to stop me from vomiting, Jolessa is to prevent painful long cycles, Welchol is to detox the biotoxins, Chlorella is also for detoxing and my GI issues and the other natural meds listed are obvious. I forgot to mention that I'm on a really good multivitamin too. Percocet, Gabapentin, and Flexiril are to manage the pain in the mean time and I have had no side effects from either of them, hopefully as treatment moves along I can get off of those medications though. I have an extremely high tolerance to medications also, I didn't have to build up a tolerance, it was there before I even got on these meds. It's Chlorella that allows me to take the synthetic medications because of it's detoxing power. I just started on Levaquin 2 days ago and I already feel better, I don't feel like I have pneumonia but pain is still an issue for me but percocet keeps me functioning for now. I may have to drop the Gabapentin soon because I don't think it's working but I just started it. The pain medications was prescribed from my pain management doctor, not my LLMD. The meds and natural stuff that were prescribed from my LLMD all have a purpose, the only thing that he has given me to treat the symptoms only is the Metoprolol, without it I end up in the hospital with a high heart rate and high bp where they would give me more drugs anyway.

I am already on Levaquin for an antibiotic but he's going to call in another abx tomorrow. I've researched these tests and they all match up with what he's been telling me, he has 4 years experience and training in treating Lyme Disease. I am extremely lucky that he just happens to be in the next town over. There are no other LLMDs in my area and if I wanted to travel else where to find one, I wouldn't be able to anyway. Last appointment I asked if there were anything else natural that I could do and he said yes but we need to figure out which antibiotics to put me on first so that I am settled. After that I am going to see a very awesome homeopathic nutritionist who has an office in a health food store (LLMD knows her), she could tell that my friend had Lyme and a sensitivity to mold before she was even tested for it and she was correct, so she knows her stuff. She was one of the people who recommend this LLMD to my friend and I. I completely understand that the root cause needs to be treated but in the mean time, I have to have some of the symptoms managed as well.

After the nutritionist, I will be continuing with acupuncture once I can save up the money and I may be able to get some more helpful herbs from him. Once I'm settled with my overall treatment and management of symptoms, I'm confident that I will be taking more naturals and less to none synthetics, that's my goal. I really appreciate your concern and I understand where you are coming from, I have also been promoting less synthetic drugs and more naturals as well among my support groups. Goal is to recover and then to replace what I've lost afterwards.

Post Edited (Emichuu) : 4/7/2012 3:24:17 AM (GMT-6)

Thank you very much! I will also pay this information forward. I have also seen that link before about the Gabapentin, I've been wondering if I should show it to my pm doctor or not. Lately, I have been feeling actually pretty decent while in bed... As long as I don't stand, I feel the best "okay" I have had in a while. I used to take Rifampin but it interacted with too much and I went a little crazy on it so I discussed it with my LLMD and he agreed that we would use the LevaQUIN instead for the staph/bart. I do know about the tendon rupture, the pharmacist warned me about it and told me to be careful. So far, I haven't had any side effects to anything except the Rifampin and some headaches from Welchol so I've been really lucky.

I see my pain management doctor tomorrow, he will probably want to up my dose on the Gabapentin but I really don't want to do that. It could be helping somewhat though, I'm not really sure because things have always been up and down for me. My pain may be better in some ways but it's still there unfortunately. One huge issue for me is that my back shows signs of arthritis and bone spurs and it can be impossible to be seated comfortable in a restaurant or to be standing around. It becomes really unbearable but I had success with these injections in my lower back, it has helped a lot but has completely worn off now. Doc may want to do that again but I'm afraid to but then again, the back pain can become unbearable even at rest even. I am negative for RA fortunately but there is some damage to my back already.

I'm so afraid of the damages I'm going to be left with... I was taken off the Metoprolol for a day after weaning off of it to see if the other meds were helping my heart get back to normal but I couldn't stand to be off of it and my heart rate flew up to very high levels so my doctor responded to me right away and called it back in but at a lower dose than before. I don't know why but the Percocet seems to work very well for me and it calms my CNS which has been so crazy from all this. I have gone off all meds completely for awhile there to see if I'd do better but I did not and eventually I couldn't tolerate the pain any longer.

I was able to quit all of my meds before cold turkey with no problems, I feel that the only problem I'll have with is the Percocet maybe but usually if my pain isn't too bad, I don't feel the need for the Percocet at all. My body has been doing pretty good against these meds, so at least I have that. I have a lot friends who are very sensitive to medications but some of them choose to deal with the side effects.

Right now, what I'm going through... Does this seem right? I don't feel that I am having a bad herx reaction like some people do. I feel okay in bed and as long as I control my pain but as soon as I stand, I get more dizzy than usual and overall I feel very weak even in bed but it's tolerable. I'm so afraid that the antibiotics won't work...

You're welcome you. It's good to hear you were warned about the fluoroquinilone side effects. When you mentioned pain I was hoping it was not since you started them. It appears not. Good.

Man you have been through the mill though with all of this. I understand you being nervous about damage one could be left with and I'm sorry. Really bad back problems too for you among other things. Geeze............

I sure hope you see results with the antibiotic that will make you feel you're going in the right direction. At least so you are not so bedbound and with less physical discomfort which will show you that you will continue to progress.

This is one bad actor bug. I really have my fingers crossed for you. I do. I wish I had words of advice on things that would help you but I don't. Maybe some mods or admin can weigh in on that for you. xoxoxo

*Oh, not all can c/t neurontin so please keep that in mind if things change with it. Okay? Just so you know. :)

Boy I hear you with the sleep Emu, I'm neuro and my brain is always rapid firing and rapid thoughts so short broken sleep with insomnia.

You heart issues would make this more overwhelming and unnerving for you no doubt about that. 10 years?

Do you understand the lyme process like one needs a biofilm and cyst buster and than drive it out of tissue and that kind of thing.

I wonder if you might benefit with some naturals to help aid this along with what you're on? A lot of doctors do this together. Naturals and pharma.

I am not a doctor so not recommending treatment, just things you maybe to read about? Like lumbrokinase and serrapeptese break through the biofilm and cyst. Teasal gets it out of hiding from deep tissue and joints etc. Then it's easier to kill once out of hiding and protection.

Make sense?

Have you taken even a pharma biofilm buster?

I don't know about any naturals for lowering heart rate, but I suggested naturals perhaps with the pharma in that, perhaps reading about them so you can see if they could benefit you and help kill more bugs. Then maybe your heart rate will go down? I'm always thinking lol.

I don't know how they work together in that, if a natural cyst buster can be used with the pharma antibiotics either. But good questions to ask maybe?

Pharma busters I'm not sure about as far as names. I know some use them but I don't know the names. Why don't you post a question and ask what people are using pharmeceutical wise to break biofilms and cysts so they are easier to get at?

This is a BIG consideration for lyme savvy MD's and ND's. If some don't bring this stuff into the equation, I would wonder how much they know. Make sense?

Then when you ask and lyme MD or the health food person that says they know lymes, it helps you distinguish who is better than the other with more knowledge and lyme savvy to help you. You know what I mean?

I know what you mean by funds. It makes it very challenging for some of us me included. I have help. I'd be in trouble if I didn't.

Natural ones are Lumbrokinase, (earthworm enzyme), Serrapeptese (silk worm), Nattokinase (fermented soy), Grapefruit seed extract. there are more but I am not sure what they are. I hear these over and over.

I have "heard" the first 2 I listed are strongest. I'm have the Serrapeptese. xo

Post Edited (waverunner) : 4/14/2012 7:52:29 PM (GMT-6)

Um, detox is not the same thing as I was explaining. Yes we have to detox, eat right, and kill the lymes.

What I was explaining is in correlation to killing the bugs specifically. They get a protective coating over the colonies, they form cysts of protection, so meds can't get at them when they do this. This means regardless of what you take, you can miss all the bugs as they are in a protective coating.

The products I listed that I thought you might want to read about and the pharma version I suggested you post and ask what the name is from others, have nothing to do with detox. They only address "breaking" the protective coating that bugs hide in.

You detox to get out toxins, your body's toxins, and the dead bugs toxins and toxins that they produce.

Make sense?

I googled Welchol, it says it's used for diabetes and high cholesterol so I do not know anything about that.

You said your LLMD put you on some naturals. Are any of them bug and co infection killers other than the one antibiotic you are on?

What naturals did he give you that you said you are using? I'm curious.