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My labs confirm my diagnosis
Hi all,
I wanted to update that the bloodwork oredered by my LLMD supports the clinical diagnosis of Lyme that I was given. I don't have all of the detailed results, I just got the "bottom line" results over the phone. Here is what I was told:
Lyme screen: positive
IGG: positive
IGM: negative
Babesia: negative
Bartonella: positive.
Though I didn't get the chance to ask for clarification, I was told that I do probably have babesia despite the negative test.
I'll be adding zithromax to my mino regime in about a week. I'm also on samento and supplements. I started abx treatement about 3.5 weeks ago.
Physically I feel stronger, and I have a lot less of the "legs of lead" feeling. My sleep is more restful. I notice that I oscillate a lot more, experiencing large swings between less and more symptoms. Before starting antibiotics, I was more so on a very slow, steady decline with little amplitude.
Mentally, I still feel very fuzzy. I still stutter, get "sensory overload" very easily, and have poor short term memory. However, my LLMD says it is very encouraging that I am showing as much improvement as I am at this stage, so I am very excited. I noticed I was getting sick in Summer '07, and even wonder if I had a more dormant infection further back than that.
Happy New Year and Good Health to All!
I wanted to update that the bloodwork oredered by my LLMD supports the clinical diagnosis of Lyme that I was given. I don't have all of the detailed results, I just got the "bottom line" results over the phone. Here is what I was told:
Lyme screen: positive
IGG: positive
IGM: negative
Babesia: negative
Bartonella: positive.
Though I didn't get the chance to ask for clarification, I was told that I do probably have babesia despite the negative test.
I'll be adding zithromax to my mino regime in about a week. I'm also on samento and supplements. I started abx treatement about 3.5 weeks ago.
Physically I feel stronger, and I have a lot less of the "legs of lead" feeling. My sleep is more restful. I notice that I oscillate a lot more, experiencing large swings between less and more symptoms. Before starting antibiotics, I was more so on a very slow, steady decline with little amplitude.
Mentally, I still feel very fuzzy. I still stutter, get "sensory overload" very easily, and have poor short term memory. However, my LLMD says it is very encouraging that I am showing as much improvement as I am at this stage, so I am very excited. I noticed I was getting sick in Summer '07, and even wonder if I had a more dormant infection further back than that.
Happy New Year and Good Health to All!
You can call Igenex and order the kit. (google their website for the 1-800 no.. I think it's igenex.com) They will send it to you at no cost. You need a doctors order for the test and it sounds like your rheumy will sign for it. The instructions are in the kit. It costs around $200, at least it did when I had it done for lyme IGG/IGM. You pay by credit card when you send it back. Igenex does not take insurance but you can submit it to your insurance company and see if they will reimburse you. I might suggest just starting with the basic lyme test ( lyme IGG/IGM) to find out if it positive for lyme or not. You can have further testing done later if the lyme is positive.
When the doctor pressed along my shin, midway down on the inside, it left 2 slight impressions of his fingertips.
I am thin and asked him how I could have swelling along my shins since they are bony. He told me to look and I saw the dents. Mine is mild, though.
I am thin and asked him how I could have swelling along my shins since they are bony. He told me to look and I saw the dents. Mine is mild, though.
What does pre-tibial edema look like?
I get puffy areas below my knee, slightly toward the inside of each leg, when I've had a Herx.
I get puffy areas below my knee, slightly toward the inside of each leg, when I've had a Herx.
I am also hypothyroid due to Hashimoto's.
The endo (in concert with the Lyme doc) just added a tiny bit (5mcg) of Cytomel. It seems I still have signs and possibly symptoms of hypo. (Slow reflexes, mild pre-tibial edema and low body temps at times)
The Lyme doc says the inflammation can interfere with the t4 getting into your cells.
The endo (in concert with the Lyme doc) just added a tiny bit (5mcg) of Cytomel. It seems I still have signs and possibly symptoms of hypo. (Slow reflexes, mild pre-tibial edema and low body temps at times)
The Lyme doc says the inflammation can interfere with the t4 getting into your cells.
I have no LLMD in my area. I am having to deal with specialists (Neuro/Rheumy/Infectious Disease/Endo) who will not even entertain lyme because I live in Georgia. I had the Western Blot test, but it was through LabCorp and not as reputable as Igenex. Yes, I was thinking of ordering the test myself and having my rheumatologist review the results. I was just wanting to know if any of you had to order the test through Igenex before you were diagnosed. Its good that you have access to an LLMD. My closest is about 5-6 hours away. I wanted to make sure that I had it before just making an appt with an LLMD.
Thanks for the data on supplements -- my LLMD isn't big on them generally, but I sure am.
Wonko, you asked about probiotics. This is the only supplement my LLMD does recommend, and recommends strongly, to replace the good intestinal flora killed off by antibiotics. My LLMD recommends Florastor brand probiotics, formal name Saccaromyces boulardii. It is a yeast, but a good yeast. I developed a slight sensitivity to it after months of taking it with antibiotics (dr called it a 'mold sensitivity', since yeasts and molds are similar) -- but after a while off, I could take it again. In the meantime, I was taking Acidophilus.
I am still having problems with yeast infection, more systemic than vaginal, giving me foggy brain (hard to tell whether it's Lyme or yeast) and generally feeling creepy and slow. A round of antifungal takes care of it (e.g., Diflucan, by prescription), but it interacts with some antibiotics so be sure your pharmacist knows all of what you are taking -- I had a bad reaction because I was getting some meds by mail order pharmacy and some at the local pharmacy and didn't think to tell the pharmacist and ask about possible interactions. Lately I've been having a lot of stomach and gut gurgling and mild diarrhea, which is getting really boring. So I've doubled up my Florastor and also started taking Acidophilus too. If it doesn't clear up, I'll be calling the good Dr. (There is a risk of potentially deadly C. difficile intestinal infection which can colonize your gut after all the good bacteria have been wiped out by long term antibiotics, but I'm already on one of the drugs used to treat C. difficile, so I may just have to suffer.)
I was warned not to take Acidophilus at the same time as the Lyme meds, because it can interfere with the antibiotics -- there needs to be at least an hour between, and I shoot for 2 hours. Same with magnesium supplements. So I take my probiotics and supplements, wait 1 to 2 hours, and then take the antiobiotics.
Re Vitamin D: My level was very very low before I was finally diagnosed with Lyme, and I shied away from taking megadoses of a vitamin I didn't understand. I don't understand the relationship between Vit D and Lyme, but there may be one? I have been reading up on Vit D and Vit A supplements and got some relatively unprocessed cod liver oil to try, but haven't yet. There are people out there who say taking just Vit D doesn't work, you need Vit A also in the right proportions. My thought is that I don't get much sun, so I should do what works for the Eskimos: fish. And for the little kids in Victorian England: cod liver oil.
My thyroid is also low, but I tried Armour and it upset my stomach so much I had to stop. Anyone else had this problem?
Sorry for the long post, and thanks as always for the advice.
Wonko, you asked about probiotics. This is the only supplement my LLMD does recommend, and recommends strongly, to replace the good intestinal flora killed off by antibiotics. My LLMD recommends Florastor brand probiotics, formal name Saccaromyces boulardii. It is a yeast, but a good yeast. I developed a slight sensitivity to it after months of taking it with antibiotics (dr called it a 'mold sensitivity', since yeasts and molds are similar) -- but after a while off, I could take it again. In the meantime, I was taking Acidophilus.
I am still having problems with yeast infection, more systemic than vaginal, giving me foggy brain (hard to tell whether it's Lyme or yeast) and generally feeling creepy and slow. A round of antifungal takes care of it (e.g., Diflucan, by prescription), but it interacts with some antibiotics so be sure your pharmacist knows all of what you are taking -- I had a bad reaction because I was getting some meds by mail order pharmacy and some at the local pharmacy and didn't think to tell the pharmacist and ask about possible interactions. Lately I've been having a lot of stomach and gut gurgling and mild diarrhea, which is getting really boring. So I've doubled up my Florastor and also started taking Acidophilus too. If it doesn't clear up, I'll be calling the good Dr. (There is a risk of potentially deadly C. difficile intestinal infection which can colonize your gut after all the good bacteria have been wiped out by long term antibiotics, but I'm already on one of the drugs used to treat C. difficile, so I may just have to suffer.)
I was warned not to take Acidophilus at the same time as the Lyme meds, because it can interfere with the antibiotics -- there needs to be at least an hour between, and I shoot for 2 hours. Same with magnesium supplements. So I take my probiotics and supplements, wait 1 to 2 hours, and then take the antiobiotics.
Re Vitamin D: My level was very very low before I was finally diagnosed with Lyme, and I shied away from taking megadoses of a vitamin I didn't understand. I don't understand the relationship between Vit D and Lyme, but there may be one? I have been reading up on Vit D and Vit A supplements and got some relatively unprocessed cod liver oil to try, but haven't yet. There are people out there who say taking just Vit D doesn't work, you need Vit A also in the right proportions. My thought is that I don't get much sun, so I should do what works for the Eskimos: fish. And for the little kids in Victorian England: cod liver oil.
My thyroid is also low, but I tried Armour and it upset my stomach so much I had to stop. Anyone else had this problem?
Sorry for the long post, and thanks as always for the advice.
My 25 level was 9 in Oct, and 8 in Nov. My 1,25 level was in normal range, though the exact value escapes me.
Yes, I was looking online and VitaminShoppe looks like it will work well. Though it doesn't look like they have the brand of Samento I take, I may need to order that online.
If the mino is making me more dizzy, I can't tell, so that works for me :)
I am on generic meds, which thankfully are covered for me.
I haven't gone in person since my tests, so no pics yet. I think there was one I forget to send out, too, that I was supposed to swab my cheek for? I lost the little kit. I wonder if they'll want me to do it now that I started treatment?
Yeah, I defintitely hope the zithro helps my brain fog...
Yes, I was looking online and VitaminShoppe looks like it will work well. Though it doesn't look like they have the brand of Samento I take, I may need to order that online.
If the mino is making me more dizzy, I can't tell, so that works for me :)
I am on generic meds, which thankfully are covered for me.
I haven't gone in person since my tests, so no pics yet. I think there was one I forget to send out, too, that I was supposed to swab my cheek for? I lost the little kit. I wonder if they'll want me to do it now that I started treatment?
Yeah, I defintitely hope the zithro helps my brain fog...
Wow, your ratio is high. My 25 D was 24 and the 1,25 D was 50. I am on 2000 per day for now. I think my 25D would have fallen further as it was 35 2 months prior to falling to 24.
My mino dose is 50 mg once per day. I see him again next Monday. The mino doesn't make you dizzy(er)? I am dizzy anyway and it is hard to tell.
GNC may be OK. I go to the Vitamin Shoppe. Make sure it is either refrigerated or says it is stable at room temp. Some, like Pearls are room temp.
Did you get a photo of your blood smear from Fry?
Good luck starting the Zithro. Is it generic? (I have no rx insurance)
~Kitty
My mino dose is 50 mg once per day. I see him again next Monday. The mino doesn't make you dizzy(er)? I am dizzy anyway and it is hard to tell.
GNC may be OK. I go to the Vitamin Shoppe. Make sure it is either refrigerated or says it is stable at room temp. Some, like Pearls are room temp.
Did you get a photo of your blood smear from Fry?
Good luck starting the Zithro. Is it generic? (I have no rx insurance)
~Kitty
My ratio was >4! I am supposed to double my D dupplement every 2 weeks. I started with a small pill (400 IU) once a day, and now take it 4 times a day. I'm working up to 4,000 IU.
I start Zithromax TONIGHT! I just picked up the Rx. I'm starting that at 300 mg every other day, and I think the instructions are to work that up to 600 mg/day.
My Mino dose is 50 mg, twice a day.
I didn't pick up my probiotics yet, nasty frozen rain and since I just had one accident, I don't want to push my luck with the rental. But I plan on stopping my GNC tomorrow. Do you think they'll have a good selection there? I can't find any in CVS. I'm also going to buy some of the yogurt that's supposed to help with the stomach, since at least I can find that easily.
I think the Zithro is being added for the Bart, but I'm not positive. I tried to write down things as they were being said, but I have serious brain fog. I used to have a great memory, so I'm not used to the sieve-for-brains I've become. Hopefully that will clear up soon, though.
I'm excited to start the zithro, I feel like after a month on Mino I've kinda plateaued.
I start Zithromax TONIGHT! I just picked up the Rx. I'm starting that at 300 mg every other day, and I think the instructions are to work that up to 600 mg/day.
My Mino dose is 50 mg, twice a day.
I didn't pick up my probiotics yet, nasty frozen rain and since I just had one accident, I don't want to push my luck with the rental. But I plan on stopping my GNC tomorrow. Do you think they'll have a good selection there? I can't find any in CVS. I'm also going to buy some of the yogurt that's supposed to help with the stomach, since at least I can find that easily.
I think the Zithro is being added for the Bart, but I'm not positive. I tried to write down things as they were being said, but I have serious brain fog. I used to have a great memory, so I'm not used to the sieve-for-brains I've become. Hopefully that will clear up soon, though.
I'm excited to start the zithro, I feel like after a month on Mino I've kinda plateaued.
I am also on Vitamin D. My ratio was about 2.
I am only on mino for now, but am taking a refigerated probiotic called JarroDophilus. I read it recommended in several forums. It has 6 diferent types of beneficial bacteria.
Ask your doctor for a suggestion. Another I have heard about and will be asking about is Fungal Defense. A patient of my doctor's said he recommended it.
Are you adding Zithro for Bartonella? What is your mino dose?
I am only on mino for now, but am taking a refigerated probiotic called JarroDophilus. I read it recommended in several forums. It has 6 diferent types of beneficial bacteria.
Ask your doctor for a suggestion. Another I have heard about and will be asking about is Fungal Defense. A patient of my doctor's said he recommended it.
Are you adding Zithro for Bartonella? What is your mino dose?
Hi,
I'm not sure I fully understand your question. Are you thinking of independently ordering Igenex testing, and then taking that (if positive) to your doctor as proof? That's what it sounds like to me, but I may be mistaken in understanding your post.
You should tell us a bit more, and maybe also start a new thread so people see that there is a new discussion. (I'm not sure everyone will keep checking my older thread!)
I found an LLMD who gave me a clinical diagnosis (based on symptoms and history) and began treatment even before my testing was done.
I'm not sure I fully understand your question. Are you thinking of independently ordering Igenex testing, and then taking that (if positive) to your doctor as proof? That's what it sounds like to me, but I may be mistaken in understanding your post.
You should tell us a bit more, and maybe also start a new thread so people see that there is a new discussion. (I'm not sure everyone will keep checking my older thread!)
I found an LLMD who gave me a clinical diagnosis (based on symptoms and history) and began treatment even before my testing was done.
Hello,
I have some major symptoms of lyme disease. Did any of you have to order the test through Igenex before you received a diagnosis. I am just wondering. There are no LLMD in my area and I just want to be sure that they don't try to treat something else. Please let me know.
I have some major symptoms of lyme disease. Did any of you have to order the test through Igenex before you received a diagnosis. I am just wondering. There are no LLMD in my area and I just want to be sure that they don't try to treat something else. Please let me know.
I singled out Samento because I think it does act as an anti-bacterial. Surely not in everyone, but I actually did get a "Herx" reaction from it before starting my antibiotics.
My vit. D was very low in the 25 form, and the 1,25 form was four times higher. The Marshall Protocol would say to not supplement vit. D. in this case. However, my Lyme doc said he disagrees and since my level was so low in 2 separate tests, I decided to start taking D supplements. It's always hard to say, but I do feel like some of my fatigue was helped, and I get less heavy limbs now.
I'm also on B12, an adrenal supplement, alpha-lipoic acid, and fish oil pills. I think that is about it.
I'm not on probiotics yet, but since I'm adding a 2nd antibiotic this week (Zithromax in addition to the Mino I've been on for a month), I think I should probably get on some!
If any one has suggestions about probiotics, please post. I've read elsewhere that the refrigerated ones are the best, but I've never seen them at the drug store. Maybe I need to go to a specialty store like GNC??
My vit. D was very low in the 25 form, and the 1,25 form was four times higher. The Marshall Protocol would say to not supplement vit. D. in this case. However, my Lyme doc said he disagrees and since my level was so low in 2 separate tests, I decided to start taking D supplements. It's always hard to say, but I do feel like some of my fatigue was helped, and I get less heavy limbs now.
I'm also on B12, an adrenal supplement, alpha-lipoic acid, and fish oil pills. I think that is about it.
I'm not on probiotics yet, but since I'm adding a 2nd antibiotic this week (Zithromax in addition to the Mino I've been on for a month), I think I should probably get on some!
If any one has suggestions about probiotics, please post. I've read elsewhere that the refrigerated ones are the best, but I've never seen them at the drug store. Maybe I need to go to a specialty store like GNC??
Among my regular vitamins and minerals and acidophilus, my doctor has me taking Mushroom Immune Complex by Source Naturals.
It has been shown to increase the Natural Killer cell count in studies.Basically an immune system booster.
It has been shown to increase the Natural Killer cell count in studies.Basically an immune system booster.
I am on lots of supplements
Acidophilus- 10 billion units daily (2 pills with abx)
SamE- 400 mg (1 pill)
coq10- 300mg (3 pills)
juice plus- 6 pills daily (2 vineyard blend, 2 orchard blend, 2 garden blend daily)
magnesium- 168 mg (2 pills)
b12- 3000 mcg (3 disolvable tabs)
vitamin c- 1500 mg (3 chewable wafers)
multi-vitamin (1 pill)
Acetyl-L Carnitine 1500mg (3 pills)
I am taking 1000mg ceftin daily
I am also taking 400mg Doxy daily
100mcg cytomel (low t3 levels)
150mcg synthroid (hypothyroidism)
Sprintec (birth control)
Email me with other questions, as some of these have to be taken together and some have to be takenm on an empty stomach.
Acidophilus- 10 billion units daily (2 pills with abx)
SamE- 400 mg (1 pill)
coq10- 300mg (3 pills)
juice plus- 6 pills daily (2 vineyard blend, 2 orchard blend, 2 garden blend daily)
magnesium- 168 mg (2 pills)
b12- 3000 mcg (3 disolvable tabs)
vitamin c- 1500 mg (3 chewable wafers)
multi-vitamin (1 pill)
Acetyl-L Carnitine 1500mg (3 pills)
I am taking 1000mg ceftin daily
I am also taking 400mg Doxy daily
100mcg cytomel (low t3 levels)
150mcg synthroid (hypothyroidism)
Sprintec (birth control)
Email me with other questions, as some of these have to be taken together and some have to be takenm on an empty stomach.
thanks for the information -- sounds like I'm covered since I'm on azithromycin already.
Several of you mention being on supplements --
--samento was named.
--what others? I take magnesium and potassium, along with probiotics, but nothing else.
--any suggestions?
Thanks!
--samento was named.
--what others? I take magnesium and potassium, along with probiotics, but nothing else.
--any suggestions?
Thanks!
I have tested positive for Bartonella. My doctor plans on adding Zithromax soon in addition to the mino I am on for the Lyme. (We are going slow)
Sorry to hear you have it, glad you know what it is.
Did you ever get painful soles of your feet? I did about 6 years ago when I think I was first infected, but it went away after a few months. Recently I read that sore soles is a symptom of bartonella, and asked my dr about it. He said no, you tested negative for bartonella about 2 years ago, so you don't have it, the foot pains were probably Lyme related.
I'm still wondering, tho. Is azithromycin the drug for bartonella? If so, then I'm covered.
Hang in there, the treatment can be mildly unpleasant, but just know that the symptoms mean that you are getting well. Sometimes I fear I am getting worse, but after a while it passes, and it was just a Herx. I've been on antibiotics for over a year, and I just keep getting better and better. It's worth the Herxing, because the other option isn't an option.
So, welcome to the club -- officially. Your membership card will arrive shortly. Then we look forward to booting you OUT of the club when you are WELL!!!
Did you ever get painful soles of your feet? I did about 6 years ago when I think I was first infected, but it went away after a few months. Recently I read that sore soles is a symptom of bartonella, and asked my dr about it. He said no, you tested negative for bartonella about 2 years ago, so you don't have it, the foot pains were probably Lyme related.
I'm still wondering, tho. Is azithromycin the drug for bartonella? If so, then I'm covered.
Hang in there, the treatment can be mildly unpleasant, but just know that the symptoms mean that you are getting well. Sometimes I fear I am getting worse, but after a while it passes, and it was just a Herx. I've been on antibiotics for over a year, and I just keep getting better and better. It's worth the Herxing, because the other option isn't an option.
So, welcome to the club -- officially. Your membership card will arrive shortly. Then we look forward to booting you OUT of the club when you are WELL!!!
At least you know for sure what you have now. I am very hopeful for a recovery for you.
Congrats!
As a Lymie that was misdiagnosed for so long I know how great it feels to finally hear that you have what you thought you had all along. It is a bittersweet experience.
It sounds like you are on a similar plan with the abx and supplements. I am on several supplements.
One that you might look into is Juice Plus. It is rather expensive and you have to pay for it out of pocket but I think it is well worth it!!!
www.juiceplus.com
There are different blends, vineyard, vegetable, and orchard. I take 2 orchard and a vineyard in the am and 2 vegetable and a vineyard in the pm. From what I have been told it basically cleans your insides out, and provides you the nutrients of fruits and veggies. It is a HECK of a lot better than drinking those shots of wheat grass. YUCK!
Best of Luck!
Talk soon!
As a Lymie that was misdiagnosed for so long I know how great it feels to finally hear that you have what you thought you had all along. It is a bittersweet experience.
It sounds like you are on a similar plan with the abx and supplements. I am on several supplements.
One that you might look into is Juice Plus. It is rather expensive and you have to pay for it out of pocket but I think it is well worth it!!!
www.juiceplus.com
There are different blends, vineyard, vegetable, and orchard. I take 2 orchard and a vineyard in the am and 2 vegetable and a vineyard in the pm. From what I have been told it basically cleans your insides out, and provides you the nutrients of fruits and veggies. It is a HECK of a lot better than drinking those shots of wheat grass. YUCK!
Best of Luck!
Talk soon!
I am happy that you FINALLY have your diagnosis ! And it sounds like treatment is working (although you can feel worse), so I'm thrilled for you !
Wishing you a Happy & Healthy New Year !
Wishing you a Happy & Healthy New Year !
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