From "CFS" author and blogger ....

Discussion in 'Lyme Disease Archives' started by munch1958, Nov 5, 2009.

  1. munch1958

    munch1958 Member

    Corkscrewed! Me and My Lyme!

    It seems this blogger now has a diagnosis of Lyme as do many former "PWCs"
  2. victoria

    victoria New Member

    I love that she's writing about this!

    Munch.... still wondering... where did you go camping in the Ozarks in '69? Cuz I went camping at Johnson's Shut Ins in Spring of '70, where I got my first tick bite... I'm really curious, it would be very weird if you had been there!

  3. victoria

    victoria New Member

    for munch...
  4. munch1958

    munch1958 Member

    Long time no chat! How are things in Mexico? I do often wonder if you are able to obtain better Abx that we can't get in the USA. A naturopath that I know was trying to get me down to a Tijuana clinic for treatment. The cost was insane -- like $8K a week for IV infusions plus
    bismuth or something like that. No thanks!

    Sorry I missed your response to this post and your question. I don't log on here too much anymore. I'm just too busy doing stuff -- just got home from having an awesome mani & pedi. What did we do before the spa chair?

    Yes, it is still amazing to me that many former CFS & FM people are now posting that they have tested positive for Lyme on their blogs. A quick Google search the other day told me that many of the top bloggers who used to post about CFS & FM have started posting about Lyme too. Wouldn't it be funny if 8 out of 10 blogs went jumped over to Lyme?

    Lida Mattman has always said it's really 93.3% not 80%. I wonder what the other 6.7% have. Probably things from that really great list you posted on the CF/FM board.

    I've been camping in about 25+ states and 3 Provinces. I come home sick from so many vacations and motorcycle trips. It's hard to know if these were new bites or relapses. Hindsight is always 20-20. Now I can look at my travel history and sort of match up the times I was ill with trips that I've taken. All of these years I thought it was some form of relapsing and remitting CFS.

    Heck if I know where, when and how many tick bites that I've really had or what strains of Bb, Bart and Babs I picked up. I'd be willing to bet it's multiple strains of Bb, two strains of Bart and 1 Babs but I could be wrong.

    My best Abx seem to be IM Claforan, Rifampin, Doxy and Mino. For the Babs, I did great on Malarone & Zith. Lately, I'm having really good results with Cipro. I've tried to take it many times but herx so badly I couldn't tolerate it. Ever since I caved and got Prolotherapy on my tendonitis in my wrists I can handle the Cipro much better.

    I wish I had listened to you on the Prolo a few years ago. It's not anywhere near as bad as people have made it out to be. It was a big NOTHING to get it done on my dysfunctional SI joint. My hands hurt way worse than my lower back.

    When I quit Abx, I get some symptoms back within 2 days so I believe one strain of Bart is the BLO one which they really have not named yet. The other thing that I've been doing is pulsing Flagyl per Dr Jemesek at 3 pills a week. My former LLMD had me doing a crazy routine of taking 1-2 pills 3x a day which made me very depressed. I can only tolerate this amount and have to cut back to 2 a week during PMS week.

    In 1969, I went to the Ozarks with my aunt and uncle. We did the usual touristy stuff and were all over the Popular Bluff area. My uncle's relatives live on a farm in Corning, AK. It was there that I think I got bit possibly for the first time.

    My uncle's niece and I went out to the farm to look at a new litter of kittens or rabbits. Instead of taking the mowed path, we used a short cut through the long weeds. It was more of a direct bee line out to the barn. Being very short, I do remember the grass or weeds that we ran through were way over my head. His niece was laughing because she couldn't find me or tell where I was unless I moved or put my arms over my head.

    It's really hard for me to know because I was a "tomboy" who climbed trees, made mud pies, sat on garage roofs, played "Ditch It", "Kick the Can" and softball with the boys on the block, etc. My mom couldn't get me near a doll. Even now, I'm an avid gardener who just loves growing things.

    How are things going with the MP? How is your son? The rest of the family?
  5. victoria

    victoria New Member

    I have just restarted the MP, now that we're settled finally, and progressing along as expected. Benicar is 'new' here (only available for past 2 years) and is not that much cheaper; neither is minocycline. Oh well, saving any amount of money is good.

    My son seems to have progressed as far as possible, & received backdated disability - the judge was actually 'lyme literate', amazingly, and sympathetic. He is occasionally doing MMS, but no more abx after 3.5 years on them; we all think he's gone as far as he can with them. Anyway, time will tell, tho my personal opinion is that he still needs to be doing something, he has accepted where he is right now altho happily he's still a 'health nut' at least and very strict - no sugar, no nothing considered 'bad'.

    Yeah, I was all over the place in the woods & fields too as a kid and whenever possible after that. I just thought itd be pretty ironic if you'd been actually at the same place as i was, LOL.

    My son grew up in the woods/fields as we had 40 acres of it. (He still live there, with his sister.) I just never saw a tick before camping in the Ozarks, then didn't see another one til moving south to Georgia. Perhaps all the DDT and the rarity of deer in those days made a difference.

    Happily there appears to be very few ticks of any kind here (haven't seen even one!), which means they're rare at least -- nobody knows what I'm even talking about if I ask. We are a long ways south of the border, so the population is likely thinned by the time birds get here while migrating. No deer, but lots of livestock wandering the roads (keeps the weeds down and the cars/trucks from driving fast, lol) so there'd be plenty for ticks if they were here.

    I'm glad the prolo helped you. I had it done for my dislocated wrist injury, I think I told you it helped but not enough. However, this past summer I fell on the sidewalk in the nearby village (sidewalks change levels wherever they feel like it, and the steps or uneveness due to other things like driveways are not marked, even in cities - so most of the time I'm looking down, ever-vigilant)

    - anyway, I fractured (hairline) my upper right arm and had it in a sling for 4 weeks. This ended up being a good thing... a silver lining... because it made me use my left hand for more things, albeit very carefully.

    Turned out to work as physical therapy, as my left wrist got a lot better quite quickly. Granted, it had been slowly on the mend over the past 5 years... but even the size went down during those 4-6 weeks I was really babying my right arm. It almost looks normal now, amazingly!

    good luck, say hi to Dr. J for us - "Keith's family from Georgia", we are so appreciative of him. He moved to DC, is that where you see him now? Please tell him for us too that his family are in our thoughts...
  6. munch1958

    munch1958 Member

    I'm so glad to hear your son is off Abx. 3.5 years seems to be around "average" if there is such a thing for Lyme.

    I know what you mean about the uneven sidewalks in some spots in Mexico. I've crossed the border in Nogales, Yuma and also was in Cabo San Lucas for my brother's wedding a few years back. I don't know how people can walk around without falling down anywhere south of the border. The sidewalks are all uneven plus they use just about any material to make a walkway.

    We walked all over trying to find my mom's prescriptions at a better price than what she was paying in the states. My mom fell twice of course once it happened right after she said she never falls down. I'd just had a hernia repaired so I couldn't even help get her out of some bushes she fell into. It was like watching a comedy routine.

    It turned out that she was better off buying some things OTC here or using AARP's mail order service. I'm not too keen on the entire Benzodiazapin class of meds for myself but found some very cheap Soma capsules there. In Mexico, they have the right idea by putting it in a gel cap. The stuff they sell here tastes very bitter.

    Soma doesn't put me to sleep it has the opposite effect of perking me right up. Here I bought two bottles thinking I could get some sleep and found myself wide awake. (Anti-histimines do this to me too.) It is the best medicine for fatigue for me ever. I also do 1 ml of methylcobalamin a day and am happy to say I'm never tired ever. My fatigue is a distant memory.

    Wrist pain is a very painful thing to have. We take for granted all the simple things we do with our hands. I've had this tendonitis in the tendon that runs along both of my thumbs (right where that little dimple in the wrist is) for about 25 years. I've tried EVERYTHING for it. My new LLMD figured we might as well throw some left over prolo meds from my back into that spot to see what happens. So far so good!

    My new LLMD is right here in IL within driving distance. It's so nice to be able to get there in just over one hour. No big overnight trip. No 8 hour drive and hotel involved. It's a husband and wife time like on Gray's Anatomy so there is a She-Dr-M and a He-Dr-M. She's a DO and he is a chiropractor who is studying cranial sacral osteopathy in Canada and the UK. He is doing some manipulation and all of the osteopathic manipulations for all of the patients.

    I don't see Dr Jemsek -- just follow him thru online documents. He seems to be like my former LLMD in MO who doesn't believe in herxing. Dr C has a patient back off meds during a herx then restart at a lower dose. Dr J's protocol is very much way less meds all the way around. It's been the only way I could ever tolerate any amount of Flagyl. Overall, it's made a big difference in getting rid of my last remaining symptoms plus I can go for longer periods off of Abx.

    It is very sad that Dr J's daughter is going through such a horrible illness. My prayers are also with his family and I hope his daughter recovers. When anyone in the family is sick, the whole family is so stressed.

    I love Jodi Picoult's books and two of them really drive home this concept especially her newest book "Handle with Care" about a child born with Osteogenis Imperfecta and of course there is the classic "My Sister's Keeper".

    During my recovery from the 6 fractured vertebrae and 2 rounds of kyphoplasty (back surgery) 3 months, I read about 165 books during the time I was stuck in bed. For the first time since coming down with LD in 1969 and CFS in 1981, I was not "too tired" or "too confused" to enjoy
    reading. I didn't write down the titles as I went along but have made an online list of them for my new blog. I've been busy writing these days instead of reading. After being through this huge ordeal with my health, I find that I have lots to say about doctors, B-HRT and hormones, infections, hypercoagulation, etc.

    My best wishes to you for a great Thanksgiving!
  7. victoria

    victoria New Member

    that your doc is closeby, sounds like a great duo as well.

    Dr. J does believe in herxing, btw; he says if you are NOT herxing, you are fooling yourself. I know there are some who say you can get better without herxing, but I can't see how given the model of syphilis. I felt his protocol of abx etc was the most reasonable compared to others I've heard. Altho he did want my son to do IV to start, son didn't want to, understandably, being old enough to understand the risks. Don't know if that was a good call or not, we never will know.

    Not only does Dr. J's daughter have leukemia, his wife has breast cancer. All this after all his business and legal problems. Such a shame, they deserve a break, he's really stuck his neck out not only for lymies but originally for HIV/AIDS.

    Glad to hear you're doing better... Happy T-day to you too!