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sarah92202 03-23-2008 06:21 PM

Re: IGeneX Results - Input Please!
Mona, thank you for the info. I hope that you had a Good Easter. I heard it was raining today up there. I am very greatful for the advice on the doc. I just found out though that my son is going to summer school and now I am not going to be able to go to WA. during the summer. I am so worried about my mom. The area where she had the rash on her leg left broken blood vessels and her leg has been swollen for over a year, and her dumb doctor just looks at it, like duh! She has so many Lyme symptoms and so does my Dad. You mentioned that you had been on a hike with your Dad. Where were you hiking? My family has hiked all over the PNW. Mostly by Baker and the San Juans. Alot of my Dad's siblings have the Lyme symptoms too, and they say it's something hereditary with them, but they are always up there hiking around. I still am not sure whether I contracted my Lyme from WA. or Texas. I worked for Wa St Parks & Rec. before I moved to Texas, I did have an embedded tick in my leg. And some slight symptoms that were so vague after that, but didn't get the bull's eye rash until 3 weeks after I moved here. Then 2 years ago I took my husband to WA. for the first time and we went hiking all over Baker, Whidbey, the Olympic Peninsula, and then he ended up with Lyme disease too. Same thing, did he get it here in Texas or from our trip. don't know, but it is quite a coincindence that he was fine before going up there.
I hope that everything goes well with your ABX therapy, what are you taking for co-nfections? I take malarone for Babesia, and it has been wonderful at stopping the night sweats. They were so bad before. Keep in touch, Sarah

Doug--I wanted to let you know that I have had a frozen shoulder for 8 months, it was completely fused, and my ortho-surgeon and the neuro had no explanation for it. I had a surgical manipulation done on Feb. 20th. It is not completely frozen any more, but it is still so stiff. As soon as I leave PT it stiffens back up, and they keep giving me a bad time like I am not excersizing it enough. I am killing myself stretching it and working with it. So I really beleive that this is Lyme related. I have had an MRI and there is "nothing" wrong with it by MRI standards, but it froze without an injury. Good luck with your shoulder, I hope that you are able to get it unfrozen w/o having to get it manipulated. But, believe me it wasn't that bad. They put you out and it is alot less painful than what the therapist do it it while you're awake. Let me know how it's going, sarah

monarog 03-24-2008 01:56 PM

Re: IGeneX Results - Input Please!
Hi Sarah,

My Dad (who is currently being tested for Lyme - we feel certain he was infected at the same time) and I were hiking in the Western Cascades, outside of North Bend - this is where we believe anyway - VERY heavily wooded/brushy. I read somewhere, highest risk of infection in WA State is the westward side of the Cascades - though don't know how accurate that is. I don't remember a tick bite or a classic bullseye rash, though did have some various rashes back then (Summer 2004), but gave it no thought. Keep in mind....I have a friend here in Bellingham who has Lyme, he KNOWS when/where he was infected as he did get a bullseye - that was right here in Bellingham out in a heavily wooded area behind his house. I'm sure you're aware, BC is having a huge increase in Lyme. I don't think the ticks know borders - I think it is much more prevalent here than people realize or than is being reported.

I hope you can encourage your mom to get to an LLMD - any family around that could aid and accompany her? I had an IGeneX lab kit sent to my dad and am insisting he be tested. He does agree and due to his symptoms, he does believe he has it too. He's had very obvious Bartonella-type rashes and bullseye off and on as well....not to mention the undiagnosed neuro symptoms that basically started when mine did. Lyme is here...I too agree...pretty conicidental with your husband and with you - having an embedded tick here etc. I just wish the medical community would wake up to this horrible's a very frustrating and humbling ride.

I am currently on 500mg of Azithromycin daily...will start some sort of anti-viral in a couple of weeks (don't remember name) and then about 1 month later we start hitting it with Flagyl...I hope I see results. I may have mentioned, I tested + for 3 co-infections as well....I fully expect this to be a long road. Hope your mom can find a doc. How are you feeling? Do you have coinfections? What is your current therapy? Take Care. Mona

sarah92202 03-25-2008 08:45 AM

Re: IGeneX Results - Input Please!
Mona, thanks for the reply! I know what you mean about nobody realizing how prevelant it is in WA. I had a friend in High School that had it, and my uncle's ex wife (ex because she went mental after having an embedded tick and he couldn't handle her anymore) she got it from hiking around Whidbey with my parents. I had a friend that I worked in the park with that I am sure now that I know Lyme contracted it. He had the bull's eye rash in his groin area and thought it was some std, then he got "mono" for 2 months. He was in the Engeneering program at UW and had to drop to economics, then dropped out of college completely and last I heard is a gas station worker. This was a gifted guy with everything going for him. I wish I knew where he was now so I could talk to him. And the park ranger where I worked at Deception Pass St Park, his wife was sickly, and their daughter was born Autistic. Another ranger there turned into a bum and ended up in jail. These were all people that were successful college educated people who mysteriously got sick and it changed their entire lives completely. And they all have the same st park in common! And believe me the Canadians from BC love the state parks in WA. And like you said ticks don't know borders and neither do people or pets up there. I know my parents have Lyme. I just can't seem to convince them, and their stupid doctors say there is no Lyme in WA. Well than why do they have WA-1 tests? I have a dentist appt. in 5 minutes, OOPS, but I will add more about my Lyme treatment when I get back, sincerely, Sarah

Braveheart07 03-25-2008 03:53 PM

Re: IGeneX Results - Input Please!
I read your post-I'm sorry to hear of your family's ordeal with Lyme--at least you know what it is and are treating it--don't give up on convincing your parents---It's such a crazy disease--I haven't been diagnosed yet, I see a LLMD on 4/2---It's amazing to me that Lyme can manifest in shoulder problems...if you do a search, for "lyme disease and frozen shoulder"'ll see tons of examples---my PT for the shoulder is going OK...I've been there a few times, and do stretches at home at least once a day, also take Naproxen for the inflamation--I definitely have a bit more Range of motion...but it's slow going...My Mom an Sister had it too, they said it takes about a year to clear up, and even then not back to 100%..
Sarah, I wish you all the best--Good luck with your battle

Braveheart07 03-25-2008 03:59 PM

Re: IGeneX Results - Input Please!
Mona--Thanks for the encouragement---I'll keep you posted--please don't check the boards while you are on vacation----relax, take your mind off the real world---I am happy for you that you are getting away, but jealous too---My wife and kids have always wanted to see the Grand Canyon....Have a GREAT TIME !! (DON"T POST !!--until you return)

sarah92202 03-26-2008 01:41 PM

Re: IGeneX Results - Input Please!
Mona, hope that you are doing well!! to answer your ?'s about my treament. I started out on 500mg Biaxin 2 a day, 100mg minocycline 2 a day and 200mg of plaquenil 2 a day. I stopped for about 4 months and took Wobenzym N for a few months, then last Sept I started taking Biaxin 500mg 2 a day, flagyl 250mg 2 a day, My LLMD just had me stop everything except Malarone, which we are using to treat Babesia, he said to do this for 4 months. I also take alot of supplements and probiotics. My son was started on the same combo as me, and he has done wonderful, but he doesn't have Babesia (thank goodness) he stopped taking all ABX's in Dec. and was at about 85%, all, he complains of is the neck pain, and fatigue (but not like it was a year ago). He started back on ABX's 2 weeks ago because he was having knee pain again. Now he is on Biaxin and Flagyl. This is for Doug also--Everyone is different and will respond to ABx's differently and what works for one may not work at all for another, so it is like a trial and error thing. We found the right mix for my son immediately, but not for me or my husband, but again I am sure that is because of the Babesia. And with my husband I am almost pos. he has Bartonella, we are waiting for the IGeneX kit to arrive to test next week. If you do not treat the co-infections you will not get well.
Doug, thank you for the kind words and I hope that your appt, goes well, research everything that you can about Lyme and be familiar with the treatment plans and ABX's. My LLMD told me a few days ago that he sincerely appreciated the fact that he can intellegently talk to me about Lyme, and that I know the protocals and am familiar with what each med. is ( macrolide, tetracyclines, anti-protozoans, anti-malarials) and what they treat. We discuss options together, and I know what he is prescribing, and I also know when another doctor (not an LLMD) may be prescribing something that could be harmful to me--such as steriods, which seem to be the answer to everything to other doctors, but are very bad for Lyme patients. The more that you know the better off you are, and you will get alot more out of your visits if you know ahead of time what they are talking about and what to expect. Good luck and let us know how everything went. Sincerely, Sarah

Braveheart07 03-29-2008 10:49 AM

Re: IGeneX Results - Input Please!
Sarrah- Hi,
Just wanted to touch on something you mentioned---It's absolutely true that everyone reacts differently to meds. This is true for vitamina/minerals as well---there is a company (can't post the web-site) that will create custom vitamins for you based on urine samples you provide to them,(they send you a kit with 4 test tubes for 4 days collection, and a mailer) and based on answers you give to their questionnaire (i.e. - you want more energy, to sleep better etc)...I just started to look into this, but I plan on asking the LLMD about this, as he is into supplementation in addition to the ABX's---there is also a company that is developing customized med's, based on the same principles...The custom supplements may be something you can mention to your Doc, and see what he/she thinks. The custom med's are on the horizon, and I will keep an eye out for them.
I hope you and your family continue to do well.

sarah92202 03-31-2008 06:02 PM

Re: IGeneX Results - Input Please!
Doug--thank you for the info on the supplements, I am very interested and will look into it. While I am off of everything except the Malarone I am really looking for some alternatives. I got the book "Detox or Die" the other day, it has alot of interesting (and easy to understand) info that makes complete sense to me. My husband and I have also been using the detox foot pads and epsom salt baths, and we are planning on getting a fir infrared sauna--eventually--when we have the money, but definately something that we really want and feel will be a huge advantage to our healing process.

KIM!! I was wondering if you still were on the boards. I had not seen you on any posts, and was wondering how you were doing. Glad to hear from you. I was unable to get on for awhile because of my shoulder. I had surgery on it 2/20 and have been trying to recover. Seem to be doing good, but still painful. My LLMD took me off of everything except malarone for a break and to see if I start feeling better just on the Malarone, he thinks the Babesia is so bad that right now the Lyme treatment isn't going to really help until the Babesia is erradicated. So, like I told Doug, Malarone and natural therapies for now. Let me know how you are doing and I will try to stay in touch this time, Sincerely, Sarah

sarah92202 04-01-2008 05:30 PM

Re: IGeneX Results - Input Please!
Kim, I am sorry that you feel like you have taken a step back. I know how aweful that feels!! wow, that sounds like an aweful lot of meds! He is adding the Zithro to all that? Why does he think that you have Babs? I felt real bad when I first started taking the Malarone, but now I am starting to feel better. I have only been off the zithro & Flagyl for a week. So we will see what happens. I was able to stop taking the armour thyroid and the DHEA, both those levels are normal now. Thank goodness, but my adrenal levels got worse, just slightly though. And I came up pos. for Celiac Disease, which I had always been negative for. UGH, this stupid Lyme!! Do you still have a sore throat, or has that gone away? Have you had any pituitary testing done? My doc is doing some testing on me since pit. problems can cause adrenal and thyroid problems. I am also having vision problems, things get real blurry, nothing is ever clear, but I will have times when I can hardly read signs or read words on the TV, then other times they are blurry, but not as bad. I have been having headaches alot too. Who knows, it's just one test after another! I hope that you start feeling better again soon. Let me know what your doc says. Sincerely Sarah

stuey06 04-02-2008 03:20 PM

Re: IGeneX Results - Input Please!
Hello jginkc,
Thank you for your feedback on Dr. R. I have been long in getting back as my parents in assisted living came down with the flu and I've been out of town. I have gained a new respect for her treatment protocol for me and believe she has restored my confidence in her medical integrity. All of her meds have been carefully dosed and prescribed based on my multiple coinfections and she has been careful to administer them to me on a systematic basis so as to not overtax my body's immune system.
I have not been pleased with her office manager's lack of respect in ignoring my phone calls after the Insurance Commissioner responded with an emphatic no to my appeal. At his suggestion back two months ago, he said to not be emotional and to perservere in the appeal process as the insurance company wanted to wear me down and refuse to pay for the $10K in medical tests as not Medically Necessary. At the suggestion of the Patient Consumer Assistance Division representative, I was to have Dr. R's manager send a copy of the actual lab reports with my clinical diagnosis of Chronic Late Stage Lyme and the necessity of a SPECT scan to confirm the latent phase of the disease. He never calls and ignores me in the waiting room when I go in on occasion for my meds.
I am responding well and am thankful for this web and you for giving me further support and info that gives me the understanding of this disease. I already knew what to expect in the way of herx and taking the Jernigan formulas Neuro-anti-detox for the side effects and am progressing as well as can be expected. Four more months, $300 for the Mycobutrin per month, but I am healing. Now I have to decide if I should take my 11 year old daughter in to her as that will be another $$$400 in intake and all the tests to find out whether she even has the spirochete or not. I wish I could just find an MD who would be open to giving her the Igenex blood draw. Any suggestions??? Thanks for your help, Kay in KC

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