Warning!! Long one! ( : (If this shows up twice, I apologize, but the board has been acting funny.....so, here goes!) Hi Blinkie, Hotpepperfan, MRDAD, and of course Molly (who knows most of this already - Hi to you too!), Thanks so much for writing. It’s great to connect with each of you. I’ve read some of your posts before and was just trying to learn. I wasn’t sure about lyme then or whether or not to go see an LLMD. Even though I haven’t been diagnosed yet, I wanted to write here on the lyme board and say “hello” and let everyone here know that I have begun the “lyme journey”. ( : My story is: I was diagnosed with CFIDS last April by a doctor in Dr. Holtorf's medical group (an FFC in Torrance, CA). I was told I was "negative" for lyme based on my IGENEX WB test. However, Dr. Holtorf has revised criteria for lyme on his website that clearly states otherwise. I posted my results for Munch some time ago and it's because of her that I am now looking into lyme as a possibility for me. I have spent a great deal of time recently researching lyme and an LLMD near me. I have been fortunate enough to find an excellent one reasonably close and I had my first appt with him a few Fridays ago. He came highly recommended off of the Yahoo California lyme group. Many claim he is the “lyme expert” of Northern California. My brief history is I am 39 years old and a full time mother of 2 (a sometimes grueling job with my symptoms, but I still LOVE it!!). I have an extremely supportive husband and parents and some friends too. We have good insurance that is a PPO, but we have still paid a tremendous amount out of pocket for the past several years. I've seen specialists of all kind, all over, as well as a week long trip to the Mayo Clinic in Scottsdale (that we are still paying off). They said I was essentially "normal" and probably had CFS. The FFC has helped quite a bit with lots of HRT, heparin and HGH injections, antibiotics and antivirals (Valtrex), oral Nystatin, fluconazole (Diflucan) and Zithromax for sinus infections, mitochondria supplements, immune boosters, and lots and lots of testing. These are the ABX or Diflucan meds I’ve taken in the last 3 years just for sinus infections: 2007 4 times (January, March, July and October) = Zithromax 250 mg (z pack - equivalent to 10 days worth) 1 time (August) = Ciprofloxacin HCL 500 mg tablets (30 days - 2 a day) 4 times (April 30 days, July 15 days, August 15 days, October 15 days) = Fluconazole (Diflucan) 200 mg tables - 2 a day for 15 days 2006 2 times (April and October) = Zithromax 250 mg (z pack - equivalent to 10 days worth) 2005 9 times (April a reg dose, then October to end of December 1 3X a week) = Zithromax 250 mg (z pack - equivalent to 10 days worth) 3 times (September to October 3 times back to back) = Amox TR-K CLV 500-125mg Tab (either 2 or 3 a day for 10 days) Even with all of this treatment my symptoms still are: -I have unrelenting fatigue -I have a constant dizziness and lightheadedness. I have “wave-like” feelings going through my head and a heavy feeling in my head. I have a feeling of poor balance. -I have constant “brain fog”, poor concentration, cognitive difficulties and difficulty remembering things. I also find it difficult to read or a strange feeling in my eyes when I try to read, difficulty in focusing on the words. I greatly lack a sharpness of mind. -I have unrefreshing sleep -I have chronic sinusitis or sinus infections -I suffer from anxiety and nervous sweating and just general strange sweating. I cannot tolerate heat at all. I am warm most of the time and sweat easily. -I also greatly lack in motivation and stamina. I’ve had to give up most everything I love to do, like walking, any basic exercise, gardening or basic activities with my kids. -I had gained 35-40 pounds during the past 4 or 5 years, but have recently lost all of it (from taking the T3, I believe, and following a protein centered diet). -I have had 2 ocular migraines (in 5 years) and severe headaches at times -I have a lower libido (testosterone HRT is helping that some) -I startle very easily and can’t tolerate loud noise or over stimulating environments -I often lack a healthy appetite (especially in the morning) -I have off and on heart palpitations -I do not have pain, but some achiness in my muscles (neck, shoulders, back) -I have strange bouts of diarrhea and then it goes away -Despite being so fatigued, I don’t often feel very relaxed -I will have my symptoms get worse for no reason, then get better or go away for no apparent reason either -My symptoms seem to worsen a few days before and during my period -In the past I would feel a “lift” after brief antibiotics I have never had a tick bite that I recall, however, in 1991 or 1992 I did have a strange bite on the back of my thigh that spread to a very large red mass. It hurt and didn’t itch and I can’t remember what I did for it. I only just recalled this bite recently in my preparation for my appt with my LLMD. It happened when I was working for doctors on the peninsula. I may have been prescribed an antibiotic or just an antihistamine for it. I don’t remember, nor do I remember having any other flulike issues at the time. It was after that though that I began having lots of anxiety, flushing, losing weight, “hyperthyroid” symptoms for several years. Then my thyroid “crashed” in 1998 and my adrenals “crashed” in 2002. I went down hill after that and now have all of these issues. Someone referred to my diagnosis as possibly being what's known as "neuro lyme"? Testing I've had shows low natural killer cells, low HGH, low T3, high Reverse T3, almost zero progesterone, low testosterone, low cortisol/DHEA, normal estrogen and perhaps a little dominant, high bp and pulse rate, high titers of EBV, HHV-6 and Mycoplasma Pneumoniae, low vitamin D, and a hypercoagulable state. I’m sure there are other things too, but I can’t remember them all! My IGENEX Western Blot (April of 2007) results were: B DUNCANI AB – REFERRAL “ANTIBODY NOT DETECTED TO BABESIA DUNCANI <1:640” LYME IGM WESTERN BLOT IGENEX IGM RESULT – NEGATIVE CDC/NYS RESULT - NEGATIVE 18 + 22 – **23-25 – 28 - 30 + **31 IND **34 - **39 IND **41 + 45 - 58 - 66 + 73 – **83-93 IND LYME IGG WESTERN BLOT IGENEX IGG RESULT – NEGATIVE CDC/NYS RESULT – NEGATIVE 18 + 22 – **23-25 – 28 - 30 - **31 - **34 - **39 IND **41 +++ 45 - 58 - 66 - 73 - **83-93 - Since you are all experienced with this condition, I would really love your input on my results. I’d also love to hear any tips you might have. So many people have already helped me. Thank you so much! I'd also love to hear your stories, experiences with treatment, cost predictions, what to expect, etc. I would be happy to share my LLMD’s name with you, but I don’t want to post it here. If you have PJ’s or Munch’s, Mollystwin, Twinofdar’s email address, please feel free to ask them for mine. Otherwise, we will find out a way for me to pass it on….. My thoughts on the appt with him are that I really liked him. I liked how “real” he was about everything. I also liked how in depth of a history he took. He got straight to the point and asked really great questions and then would explain his thoughts. I really liked that. My husband sat in on the appt with me, which really helped. He feels invested in my plan of action and knows what I know too. He asked my husband some questions too, which I also liked. He sat in a big oversized chair across from us and settled in for a lengthy discussion. It was almost a 2 hour appt. I came very prepared with copies of all of my labs from the past year (including my IGENEX WB test), all of my test results from the Mayo Clinic, any older labs that may mean something as well as 5 pages I typed up of my current symptoms, current prescriptions and supplements, brief history and onset of symptoms as well as a chronological history of who I’ve seen, what they diagnosed me with, their treatments and what I believe has helped me. After going over everything, he did a brief physical exam. He said that my case was very compelling. He felt that I likely have lyme and one or more co infections based on my symptoms and history and my previous IGENEX test, but he still wants to do more testing. His Dad apparently works at or runs the IGENEX lab and he himself works as a consultant there. He said my test from a year ago was significant, but that he wanted to put me on Doxy for 3 weeks and try testing me again. He had blood drawn while I was there for the Bartonella test at IGENEX and would send it off that day. He wrote a prescription for Doxy for me to take for 3 weeks and then get my blood drawn for a repeat of the IGENEX test I had a year ago (Western Blot). He also gave me a prescription for oral Nystatin and some strong probiotics to help offset any yeast issues from taking the Doxy. He said that my Hashimoto’s (thyroid) that came on in the mid 90’s was “classic” for lyme. I thought that was very interesting. He said that hormone imbalance in general was very common with it also. During the physical exam he noticed what he called “lesions” on my skin (mostly on my abdomen and chest). I’ve often wondered why I had them and just assumed they were from aging. They look like funny small red bubbly shaped moles that start out very tiny and slowly get larger. He said those are classic for Babesia. I probably have a dozen of them. He also said many of my symptoms might be Bartonella. He said it was actually possible to get one of those without getting lyme (I think Bartonella), but most likely if I had them I would have lyme as well. He also sent me home with a testing kit to do a DMSA 24 hour urine challenge test for metal toxicity. I was really glad he was looking into that as well. He said if I feel improvement on the Doxy then he will put me on it for longer. He said I need to wear sunscreen while on it so I don’t get a sunburn. Is that a real problem with the Doxy? Is sunscreen enough or should I avoid sun altogether? That’s a hard one for me. I love the sun! It makes me feel better. This is California after all! He did say that if I did contract lyme and the other infections way back in 1991 or 1992, then it would have been possible to have passed it on to my kids in utero. That really makes me sad if I did, but he said not to worry about that right now. First we need to find out what I actually have. Once he knows more about me, then he will consider options for my kids. If they were born with something, and are healthy now, it may not show up until they start puberty. Also, my daughter did have an actual deer tick attached to her a few years ago. It was very newly attached and not engorged. I thankfully had my wits about me enough to save it and take it to the County health dept to have it tested. They said it was negative for lyme. I’m just not sure if that’s good enough, especially considering that I doubt they checked it for co infections. My LLMD also said that I may not have gotten the most severe symptoms from the lyme (and other infections) and that I am probably doing reasonably well for the amount of time that has passed because of good genes and a strong immune system. That statement made me feel so good. I have felt the complete opposite for so long! Like I am not strong at all and must have a really lousy immune system. It’s been very depressing; when in fact I may have successfully fought the infections off somewhat for almost 2 decades. He also said that the amazing treatments and protocol that I have done in the past year have also helped me. I’m glad to know that all of the tons of money I’ve spent in the last year at Holtorf’s office haven’t been a total waste. He said that also if it’s been this long then the infections have literally become “one” with me, even attached to my DNA. That’s why it is sometimes so hard to diagnose. The hard part now would be to get in there and kill them off. Successfully doing that would then make them show up on the testing. 3 weeks on the Doxy should succeed in doing enough of that to hopefully get a positive result. He said that he wouldn’t put me on Zithromax right now because I have been on it so much in the past and it may have become resistant to it. He also told me to continue on the other things I am taking so I don’t make too many changes right now. It’s also possible and likely that some people have been bitten more than once in their life. This could be the reason for different uprisings of symptoms over the years. It’s hard to imagine getting bitten twice! He was very positive about treatment. He said there was no cure, but treatment for most people was highly effective. He also said that with positive response to treatments it meant no negative effect on a person’s lifespan. He made me feel very hopeful. He told me that if it turns out I don’t have the infections, he will still help me or point me in the right direction. I’m sure there’s more to tell, but I can’t think of it. Oh, he did tell me to drink lemon juice in water or apple cider vinegar (or a pint in a bath) to help with any “die off” symptoms. He said alkalinizing the body, blood and skin would help with that, just in case that helps any of you! ( : Last of all, he did recommend a local doctor to replace my FFC doctor with regards to hormones, viruses, etc. His name is Dr. William Mora in Sacramento. He sounds great. I haven’t seen him yet but plan to make an appt soon. My questions for you are: -have any of you done the DMSA testing and did you have any reaction to it? -do any of you have Babesia or those red moles? -do any of you have Bartonella? -can you offer me any more advice based on what he’s having me do? If I think of more from the appt, I will let you know, but overall I was very pleased. I feel more at peace with this plan of action right now than from any other I have done. Thank you all for your input and suggestions. I’d love to hear what you think about what he’s having me do and what his comments were. Thank you!! Well, this post is long enough!! Best Wishes, Erica P.S. I had my worst day so far yesterday. I felt really lousy at bedtime, terribly fatigued, nauseous and fluish. Not fun! I’m a little better this morning….. MRDAD – yes, I’ve read your posts and you’ve lived near or where I’ve lived most of my life. I grew up in Reno of all places, went to college in Seattle then moved to the Bay Area and eventually here. I’m glad your daughter is doing well. That makes me so happy to hear. It sounds like your Doxy dose is low, but that’s okay. When you raise it up you won’t feel as bad after being on it at a low dose for awhile. Please keep us updated on your progress. I will find a way to get you my LLMD’s name. You sound like a great Dad! ( : Al Gore is such a putz! (my Dad’s favorite word), but since he DID invent the internet, we are all able to talk!! What a guy!