it's sounds as though most his patients are treated for 3-6 months....

I had given him the list of symptoms of which I circled nearly every single one of them....I really thought that by his looking at that, he'd say "wow, I'd say you probably have lyme"..... he kept trying to give each ones a different reason for having....ie...I have breast discharge and haven't nursed in over 3 years (he said pituitary can be involved in that....I know that, but I've had prolactin levels checked and they are normal), the air hunger, he said could be my anxiety.....

anyhow, he gave me a month of omnicef 300mg twice a day, I'm supposed to pee in a cup on day 3, 5 , and 7 to send to igenix. they also took blood for a western blot for igenix.

I'm just not sure about this guy. It's a starting point I guess.... he said of course to take probiotics in the healthfood store, but he doesn't market supps of all kinds....he doesn't believe in that , and thinks its just a way for some of these docs to make money.... but I do believe we need to build up our immune system.

he also kept making comments about the pain meds I take...which I believe to be not that much, and should be on more....after having talked with some people who don't seem as sick as I am or have nearly all the symptoms I do and somehow get morphine, etc... so it makes me feel as though he's not all that compassionate, and God knows he wouldn't help to play around with those meds to make me comfortable.

Problem is finding a pain doc around here who isn't injection happy with steroids! I am lucky that my family doc prescribes what he does, but I know he won't go any higher, it's like the DEA is up everyone's butts around here, it's really sad. And I can't really talk to my regualr doc about going behind his back to a lyme doc right now, for fear of him dropping me, then I would have no meds at all.....

Right now I am mentally exhausted. I really need to find a psychiatrist, I do think I need to be on xanax for my anxiety, and I hear it does help with the pain, but my doc is no fan of that long term....he's given me some here and there, but sparingly. I don't know which way is up anymore, where to turn or what to do. not that I want it long term every day, but there are days it would be nice to have on hand

I guess I'll take these abx, go next month, see what the test results are, and see what happens. It did sound as though he'd treat me even if it's negative, so that's good....but if he only goes for 6 months, that's bad.... he did say he does do IV and injections too....so maybe there's hope...maybe I'm just emotionally charged right now.

My big issue is that he didn't seem big on building up the immune system, or treating co infections....don't co infections need to be treated first?

and this test I have to send to igenix, I have to collect urine on days 3, 5, and 7 of abx.... I hear that the these abx aren't strong enough that it will be a waste of $200..... ugh....just drained right now.

Central Hypothyroidism. The incidence of central hypothyroidism, involving hypothalamic or pituitary dysfunction, in the USA population at large is about 0.00021% (12). My research group has found that of 92 sequential unselected FMS patients, 40 patients (43.5%) had laboratory test results consistent with central hypothyroidism (16, 18). Other researchers have also reported high incidences of test results consistent with central hypothyroidism (20,21).

Most patients improved with dosages between 81.25 µg. and 100 µg. (Normal replacement dosages were reported to be from 25-to-75 µg.) Since that early open trial, my colleagues and I have continued to treat euthyroid FMS patients on the assumption that they have thyroid hormone resistance. We find that approximately 75% of euthyroid FMS patients markedly improve or completely recover when treated with what we term "metabolic rehabilitation." The treatment involves the use of T3

Armour Thyroid, a natural thyroid hormone medication, may be helpful if tests show abnormal thyroid function. People with fibromyalgia may want to have their tests examined by both conventional and holistically oriented physicians because levels of thyroid hormone in the blood are often interpreted differently. Specifically, people with fibromyalgia may want to ask for an assessment of T3 levels, a lab test often not done by conventional doctors

Pain management is a tough issue. Very, very tough. After he/she knows you a bit better, he/she may be more willing to prescibe stronger painkillers. He/she might be being "careful", in that some folks truly are "med seekers", and he/she may just be guarding against that. In the meantime, however, you need some relief. I've found that, for myself, SOMETIMES a couple of Aleve will keep things almost tolerable. When it gets bad, however, I do not hesitate to take tramadol.

The good news is that you are at least STARTED on abx. Perhaps they will begin to make a difference soon. If they don't, I encourage you to give it maybe 2 weeks, and get on the horn with the LLMDs office and let him know exactly what is going on. You might even want to have a suggestion or two in mind. I would skip asking directly for pain meds, but rather take the tactic of "gosh, this pain has gotten so unmanageable for me the past several days - what do you suggest". Then let him/her suggest it. If he/she doesn't, you could try something like "I met another lyme sufferer who mentioned that she had found considerable relief with periodic use of Tramadol". Then see how he responds. Let him/her know you are open to trying various combinations of abx, and that you had heard that CEFTIN and SUPRAX (yes, you can still get it - you just have to use the kiddie suspension version) had been effective for some folks, and would he/she be willing to try it.

I wish you the best of luck in your treatment. It's a long road, but you've started on the path. Now, you need to just keep walking it.

Hang in there,

~STS~

The good news is that you are at least now started on abx, and that your doc is not opposed to the IV route (which has been effective for many). Keep in mind, this was your FIRST visit. Like any good MD, part of his/her job is going to be to rule out the obvious before ruling in other possibilities.

Yes, I am keeping in mind this was just my first appt. I am sure he's not going to throw all sorts of abx at me without getting some testing done. He did run igenix western blot along with urine... I already sent the urine test off. Not expecting much from that though.

THe pain problem.... I am already on pain meds.(for my dx of fibro and MCTD) and STILL have such high pain levels. I would hate to know what I would feel like without them. I used to be so opposed to pain medication, more of a "natural" route kind of person, so it was a hard pill to swallow, literally. BUT, after talking with folks, and researching, I came to the conclusion that I would take them. I really don't want to do anything stronger at this point, just muddle through best as I can, and hopefully the need for stronger meds won't be here soon enough anyhow. Although from talking with people it will probably take me a long time to get well (been infected for 20 years)...been fading fast for the past 8 at least. But his thing was, "well, if you've been on pain meds for more than a couple of months your addicted".... well, I don't care about that at this point. and no, I'm not addicted, I even ask my doctor to lower my dose at times, my body has surely built up tolerance, and might be psychcially addicted, but I'm certainly not robbing little old ladies for drugs...lol. There has been some great articles and studies done on pain meds, I will post later, about if they are taken correctly and not for "recreation", the likelyhood for abuse is quite low. If I were addicted to them, I wouldn't have kept searching for answers, wouldn't pay tons of money on alternative therapies to help my pain....I would go to my doc, get my pills and be happy...but that certainly isn't the case. I can't wait until the day I don't have to take ANY medications, abx, pain meds, probiotics, supplements-although I am sure I will always continue on supps.

I am hoping that my next appt. he will be willing to discuss co infections, he kept trying to write off my air hunger as anxiety....well, #1 I don't get this kind of air hunger with my anxiety attacks, and #2 lyme can be the cause of my anxiety...or so I am hoping. But I would at least be tested for co infections. I don't want to miss anything and be spinning my wheels, you know.

I am just researching, reading, talking with people, I feel I need to build up my immune system, and do some alternative things along with abx.

I'm certainly not writting him off... he takes my insurance, and I hear that the BEST do NOT take ins. that way they aren't answering to the ins. companies. But I can't afford that right now. So this is a starting point. I got what I want, antibiotics, I'm started on treatment, it's the first step in a long road. So I will go down this path for a while, of course, still researching alternatives...supplements, people's stories, etc...and when this isn't working for me anymore, I will seek a new doctor.... who knows, this may be all I need.... we'll see.

I think when I wrote the original post, I was emotionally charged. I expected, since I have over 60 symptoms, him to look at that and say "no doubt, this is it".... but looking back, that would be stupid. It would be just as dangerous to treat for lyme and not have it, as it would be to have it and not treat it.

I too am sorry that you have to deal with all this, I've been through it too. I am not a patient person and it was a real struggle to wait for results. I have Lupus/FMS/Celiac/and treated Lyme Disease. Because of my pain and fatigue recently, I went to a new doc, he's wonderful. I am not what you would consider a holistic person, so skeptical of that approach. As a starting point my doctor put me on a raw food diet (first few days are killer, then after that no problem), you can google it. He also put me on Calc/Fluor, Magnesium, B12 shots, and Iodoral (Iodine/Potassium). After the first few days I noticed that a majority of my pain was gone, and the fatigue is getting much less, I really am surprised at how good I feel. Now this is not the extent of his treatment, as we are waiting for blood tests to get back, but if I would have know that the raw food diet/supplements would help me this much, I would have done it sooner! I just wanted to share that with you, you may not be at a point that you want to approach this, but hopefully some time in the future you will, it's been a big change for me. Please feel free to ask me any questions about the above, best of luck!

My friend was just telling me about the raw food diet, her mom swears by it. I guess there was a study done with diabetics, and many of thier problems were nearly reversed after a month of raw food diet.

the only thing I could find online last night, doing a quick search , was stuff you had to pay for. no real info...

thank you again.

j

Strawberries

Bananas

grapes

pineapple

madarin oranges

apples

cherrie

(any other you want)

All the above I make variations of fruit salads, my favorite is bananas, strawberries, and mandarin oranges. I use these same fruits to make a breakfast smoothy, however I add 2 tbls ground flax seed, Stevia (a natural sweetner, spendy but you don't have to use much), and I add a powder (magnesium) called Natural Calm that doc gave me. I think you can get all the stuff I mentioned in the previous posting and this one, in a natural food store, health food store.

celery

squash

onions

fresh garlic

various lettuce (variety and dark green is good)

sprouts

tomatoes

waterchestnuts

olives (my little cheat to make it taste good)

mushrooms

cabbage (you can prepared shredded)

carrots

cucumbers

various fresh herbs

I mix any of the above into a salad, usually most of it. I have a big helping and add a tbls of fresh tuna (my little cheat, envelope/can water only), add 2 tbls olive oil, garlic powder, onion powder, (whatever spice you like), salt and pepper to taste.

Any kind of nuts and seeds you like or want to try. Make sure you get raw, not roasted or flavored. It is recommended that you have a bowl of nuts/seeds soaking in water in the fridge for casual eating/recipes over night or 6-7 hours. Just dry them off and eat, or add to salads, smoothies, whatever.

Now this is what I have done to start, there is a ton of other things to do, it requires equipment and time. (dehydrators, food processors, juicer) I will get to that soon and share with you too. Drink lots of water and juice, I don't have a juicer yet so I get all natural, organic, no additives juices. You can also make veggie smoothies. I know you will have lots of questions, so feel free to write me here or as imnessa@yahoo.com.

http://www.rawguru.com/

http://www.living-foods.com/

http://health.groups.yahoo.com/group/raw-food-recipes/

http://www.vegetarian-nutrition.info/positions/english/ raw_foods.html

wow, thank you for the wealth of information on this! I am going to print this page out and try to do this. I honestly think this is a great idea, that possibly this is how we were meant to eat.

question though...when i was reading online, I did notice some "problems" mentioned, such as lack of certain nutrients. Of course, my brain just doesn't work for me anymore with the lyme, so I can't recall exactly which ones, but have you heard this and what do you do about it?

I haven't checked out the links yet, so this question may be answered in those, if so don't worry about it.... but my friends mom took an actual class on this, and she said they made a "tuna burger" type thing, that had NO tuna in it, but tasted just like it. Do you make any recipe's with this, or just salads, and graze on it?

It makes sense that it would take a few days to get used to it. I have heard that about certain things, about getting the processed foods out of your system, etc.

again, thank you for all the info. I greatly appreciate it. I would try just about anything at this point.

Yes, I am going to do the abx, and supps, and probiotics, etc. but I know it's going to take more than that. I don't think that "one" way is right or wrong.... I have too much evidence that you need to co mingle both ways....natural and medical.