Guest guest Posted May 5, 1999 Report Posted May 5, 1999 Gee, it sounds like a herx to me. I always get weepy, foggy and my back and neck get tight and painful. I also get sciatica-type pains in my legs and tremendous fatigue. I think that taking vitamin C and drinking tons of water seems to help me get through it. Jean Quote
Guest guest Posted May 5, 1999 Report Posted May 5, 1999 --- Scully <jscully@...> wrote: > From: Scully <jscully@...> > > Gee, it sounds like a herx to me. I always get > weepy, foggy and my back and neck get tight and > painful. I also get sciatica-type pains in my legs > and tremendous fatigue. > > I think that taking vitamin C and drinking tons of > water seems to help me get through it. > > Jean > Thanks jean- it has gotten progressivly worse as the night has gone on and im now running a low grade fever. i also have what feels like cold sores on my bottom lip. This is so weird. Thanks again and i will try the vit C L (MI) > > ------------------------------------------------------------------------ > Star Wars fans are using ONElist to share the fun. > > Are you? > > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 5, 1999 Report Posted May 5, 1999 Hi -- Fevers are good, you know! (and they are a common feature of herxes). The spirochetes don't like high temps and they turn down our thermostats so that many Lyme patients have subnormal temps. Mine has been running around 97.6 or so since I've been sick. A couple of times I got a virus that gave me a high fever (around 103+) and I didn't treat it at all, just let it go. It's not dangerous to run a fever until it gets over 104. I've approached fevers this way for years and I really think it cuts down the length of my illnesses. Anyway, after I ran the high fever a few weeks ago, I felt great for a couple of days! My joints were free from pain and I felt almost normal. Then the symptoms crept back. have you been reading about heat treatments? There's some interesting studies about bringing patients' body temps up with hot baths, hot tubs or saunas. They often find it extremely debilitating at first but it seems to help them get better. They're not sure about how it works, but it appears to make the antibiotics more available to the cells, and maybe makes the bacteria more susceptible as well by changing their metabolisms. I have tried it a few times here at home with hot baths, but my tub is small and I'm kinda big these days :-) so I can't immerse my whole self. But I have gotten my temp up to about 101 and I would feel incredibly tired afterwards and have to sleep. I've only done it a few times so I haven't noticed any real improvement yet. I have a copy of a paper on heat treatments I can send you if you're interested. Jean Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 In a message dated 5/5/1999 9:53:44 PM Eastern Daylight Time, lclott@... writes: << The chest pain does not get worse with activity nor does it get better with rest so i dont know what that is. >> : I also had terrible chest pains.......thought I was a candidate for a heart attack more than once. Lyme disease manifested itself in me with horrible muscle pain. It turned out that my chest pain was actually severe muscle spasm in my pectoral muscles. You might want to check this out. Massage therapy really helped me. I would, however, check out the cardio situation first--I did and all was OK. Mona Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 Hi L, I can't answer your questions about the LUAT as I have had no experience with that test. I have been on high doses of amoxicillin and probenecid, and had the worse herx of my life on that. This was very early in my treatment, and I remember thinking at the time, I was ready to check out. I would guess you are herxing from this combo. Good luck on the IV Rocephin treatment, Hugs, Marta >From: lc lott <lclott@...> > >Hi all- >I need to run this by everyone and see what you think. >I started taking 3gms of Amoxicillin on 4-21 along with Probenecid >250mg while waiting to get going on the IV Rocephin that I really need. >For the last 4 or 5 days I have been in a major fog and the fatigue and >back pain are horrible. Im also having chest pain and severe mood >swings. These dont go on constantly. I can be ok for a few hrs after I >sleep for 3 hrs or so. Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 --- WISHXXX@... wrote: > From: WISHXXX@... > > In a message dated 5/5/1999 9:53:44 PM Eastern > Daylight Time, > lclott@... writes: > > << The chest pain does not get worse with activity > nor does it get better with rest so i dont know > what that is. >> > : I also had terrible chest pains.......thought > I was a candidate for a > heart attack more than once. Lyme disease > manifested itself in me with > horrible muscle pain. It turned out that my chest > pain was actually severe > muscle spasm in my pectoral muscles. You might want > to check this out. > Massage therapy really helped me. I would, however, > check out the cardio > situation first--I did and all was OK. > Mona > > Hi Mona- Thanks for the info. I agree that it is probably muscle spasms because it is in my mid back as well as my chest. I finally gave in and took a flexeril and a vicodin along with my Celebrex to sleep last night. I think and hope this is a HERX. I am going to start the LUAT in the morning i think. If its not then i will have to repaeat it but if it is I can send the results to all the idiots at the Ins. CO. and my lawyer to get some help and finally get my IV Rocephin. Thanks again for all your input. L ------------------------------------------------------------------------ > Who offers the richest group communications tools on > the Internet? > > Answer: ONElist. Check out our homepage for > details! > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 --- J & M McCoy <mlmccoy@...> wrote: > From: " J & M McCoy " <mlmccoy@...> > > Hi L, > I can't answer your questions about the LUAT as I > have had no experience > with that test. I have been on high doses of > amoxicillin and probenecid, > and had the worse herx of my life on that. This was > very early in my > treatment, and I remember thinking at the time, I > was ready to check out. I > would guess you are herxing from this combo. > Good luck on the IV Rocephin treatment, > Hugs, > Marta > > > >Hi Marta- Thanks for your response. I am going to start the LUAT in the morning. I hope this is a HERX. And I also hope it lets up for a while. Bad enough feeling bad without making it worse. I know we want to do it but man I dont know if I can take many more of these. And, my LLD said it would probably be worse on the IV Rocephin. I am going to check out those Ins. sites when i get done answering these posts and see what I can find out about how to get some help there too. Thanks for all your info. Once again you are all so great. Im not sure I would get thru tis without all of you to lean on. L > > > ------------------------------------------------------------------------ > Wanting to get back in touch with old friends? > > Reunite through a ONElist community. > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 I also have horrible chest pains. The doctor said it was muscle after reviewing an adnormal EKG. The EKG showed that I could have had a heart attack, but after further testing it was determined that I didn't. (I'm only 25, non smoker, eat low fat, and alittle over wieght) There was no scare tissue on my heart.. The doctor said that all of my chest pain is muscle.But I agree that you should have testing doneI hope you feel bette4r. Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 As a cardiac lymer your dr NEEDS to do a haulter monitor test on you.......the EKG ONLY shows what is happening with the heart at the particular time it is taken.......the haulter monitor test is done for usuallly 24-48hrs and you wear the electrodes on your body and carry a little radio sized device on a harness.......every time you get a symptom you press a button on the device and then write down what yo were doing at that time.......CARDIAC LYME is nothing to IGNORE....it can kill you........lymebrain Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 --- Prinny328@... wrote: > From: Prinny328@... > > I also have horrible chest pains. The doctor said > it was muscle after > reviewing an adnormal EKG. The EKG showed that I > could have had a heart > attack, but after further testing it was determined > that I didn't. (I'm only > 25, non smoker, eat low fat, and alittle over > wieght) There was no scare > tissue on my heart.. The doctor said that all of my > chest pain is muscle.But > I agree that you should have testing doneI hope you > feel bette4r. > > > Hi - Thanks for the info. When all this started in Aug.my family doc did a 24 hr. Holter Monitor and told me it was normal. I did however have some SVTs from time to time. Now I am beggining to wonder if this Holter was so " normal " after all. I see my LL doc in 2 weeks and will mention it to him then. I also had an abnormal chest x-ray in Jan. It showed a small heart shadow which the Internal Med doc thought was possibly s Disease but after the test for that came back normal she said it must be " normal " for me. Didnt think of all this till this chest pain started and now feel like an idiot for not bringing it up to my LLD before. Guess we will see what happens in 2 weeks. Takse care. L (MI) ------------------------------------------------------------------------ > ONElist: where the world talks! > > Join today. > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 --- sherri borgquist <srb13741@...> wrote: > From: sherri borgquist <srb13741@...> > > As a cardiac lymer your dr NEEDS to do a haulter > monitor test on > you.......the EKG ONLY shows what is happening with > the heart at the > particular time it is taken.......the haulter > monitor test is done for > usuallly 24-48hrs and you wear the electrodes on > your body and carry a > little radio sized device on a harness.......every > time you get a > symptom you press a button on the device and then > write down what yo > were doing at that time.......CARDIAC LYME is > nothing to IGNORE....it > can kill you........lymebrain > > Sherry - I had a Holter Monitor in Aug. and although it showed some SVTs my family doc said it was fine. Now that im seeing a LL doc I am going to mention it to him. I see him in 2 weeks so time will tell. Thanks for the info. I will keep you posted. Take care L(MI) ------------------------------------------------------------------------ > Want to learn more about your list users? > > Now you can with our new User Survey Tool - see > homepage for details > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 6, 1999 Report Posted May 6, 1999 --- Scully <jscully@...> wrote: > From: Scully <jscully@...> > > Hi -- > Fevers are good, you know! (and they are a common > feature of herxes). The spirochetes don't like > high temps and they turn down our thermostats so > that many Lyme patients have subnormal temps. Mine > has been running around 97.6 or so since I've been > sick. > > > > > I have a copy of a paper on heat treatments I can > send you if you're interested. > > Jean > > > Jean- Sure I would love a copy of the info on heat treatments. I know when my back and joints hurt a hot bath will usually help. Not true this time tho. My normal temp is also around 97.8 so i know when it is 98.6 that i have a fever it has been running between 98.9-99.4 off and on. The same thing happened last mo when my dentist out me on Pennicillin for an abcess in a wisdom tooth and i thought the fever was from that but now am not so sure. Must be that i was having a small herx then and didnt even realize it. had the major brain fog and the fever but not the pain that im having now. Thanks for the info and ill be looking forward to reading the heat info. Take care L(MI) > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > > Join today! > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote
Guest guest Posted May 10, 1999 Report Posted May 10, 1999 I agree with Sherri regarding Holter monitor test don't know where I got the spelling from! I've had 2 that were 28 yrs apart and both show the same problem and it makes me feel better knowing that the doctors know about it and watch it. It's one of those things you can get a pacemaker for but if I've made it this long without one, believe I'll give the IV some time to help fix the problem. So many of the things I've read tell about people having all kinds of unnecessary surgery that is hard on them physically and otherwise! However, if surgery indicated and you feel better about doing it, the do it. Each and every one of us is different and affected in so many different ways. For myself only, just knowing what was causing my symptoms helped to relieve a lot of the anxiety that helped to self perpetuate everything! Take care everyone. Wishing us all health and freedom from pain, both physical and emotional - sherri borgquist wrote: > From: sherri borgquist <srb13741@...> > > As a cardiac lymer your dr NEEDS to do a haulter monitor test on > you.......the EKG ONLY shows what is happening with the heart at the > particular time it is taken.......the haulter monitor test is done for > usuallly 24-48hrs Quote
Guest guest Posted May 8, 2003 Report Posted May 8, 2003 My son has been treating with Dr. Goldberg for a little over a year. The first few months we saw some progress, more focused, less hyper. Since then there has not been any progress, in fact he has not been able to recall or remember any spelling words learned this year. In fact his behavior is now a problem and never was prior. I am beginning to think that all the costs and medications are not worth the fact that there is not any progress. Any thoughts or comments are appreciated. Has anyone else experienced such a long period of no results and increasing poor behavior? Quote
Guest guest Posted May 8, 2003 Report Posted May 8, 2003 Please, try to understand and be patient with the current protocol being used. Dr. Goldberg has logic, science and hard facts backing up his facts that we are dealing with a neuro- immune condition and our children are diseased. Unfortunately, we do not have the most sophicasted drugs to speed up the recovery of our children. My daughter is now 10 years old. She is almost toilet - trained completely and is starting to speak more, but her behaviors are interfering with her progresses. She was 7 years old when we began with Dr. Goldberg and yes, there is progress happening, and yes this is happening at a very " S L O W " rate. But nonetheless, more progress is happening, progress we were told was merely impossible. These kids are sick, more sick than I even realized at the time I had my 1st appointment w/ Dr. Goldberg. My daughter was in extreme pain often and would basically go hysterical for hours at a time, until Dr. Goldberg literally changed our lives. I know that I was unhealthy as a pregnant woman giving birth, to what I was told was going to be a healthy child. I could really give you specifics, but unfortunately I am at work and I do need to get back. My heart goes out to you and all the parents just learning about the protocol. It is the only logical, sensible medical treatment plan for our children and I know this from the bottom of my heart. Email me privately if need be. I will respond, answer all questions and again get more into the specifics of my story. All the best, Michele Davies Quote
Guest guest Posted May 8, 2003 Report Posted May 8, 2003 ----Original Message Follows---- From: " shmedeiros " <ShMedeiros@...> Reply- Subject: Need your opinions Date: Thu, 08 May 2003 18:50:14 -0000 My son has been treating with Dr. Goldberg for a little over a year. The first few months we saw some progress, more focused, less hyper. Since then there has not been any progress, in fact he has not been able to recall or remember any spelling words learned this year. In fact his behavior is now a problem and never was prior. I am beginning to think that all the costs and medications are not worth the fact that there is not any progress. Any thoughts or comments are appreciated. Has anyone else experienced such a long period of no results and increasing poor behavior? -------------------------------------------------------------------- Yes, We saw the same problems originally. My sons behavior is the reason that we stopped seeing Dr. G the first time we began treatment. I guess we're an exception because we are patients again. Our experience helped me to gain some insight, although we still struggle at times. On top of the problems contributing to my sons original ASD symptoms, he also developed bacterially triggered OCD. (non-strep) What I learned from all of this was that SSRI's were and are, an issue. When we stopped treatment his paxil dose was at something like 7.5mg. After we had resumed treatment we were again experiencing the deterioration after seeing improvements initially, especially after adding Kutapressin to the mix. It took me a little while to put two and two together because he had also had a bacterial infection that triggered off his OCD. My son shows some benefit from the SSRI's when we keep the dose extremely low. 5mg seems to be the upper limit for paxil and prozac. Every time we go beyond that, over the next couple of weeks we begin to see a variety of increasing symptoms. The worse is the behavior because that has negative effects on everything. We also have seen the same type of deterioration with antibiotics like Biaxin and Erythromycin. They help initially with his infection but there appears to be a problem with the meds. Augmentin and Bactrim dramatically treated his OCD without the deterioration. He also deteriorates when put on AmpB. Since I know my child and what is normal behavior for him. Even when extremely difficult at times, I hold my ground when I see behavioral symptoms that I know ARE NOT behavioral issues that can be addressed as normal behavior. This treatment isn't easy or simple. It takes a lot of patience and time to figure out if something is positive or negative, what is an adverse reaction and what is behavior. Although my children have the same parents, there were differences even between them. I'll be so thankful when direct treatments become available and we no longer need to address every piece of what is playing into this. Cheryl _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote
Guest guest Posted May 9, 2003 Report Posted May 9, 2003 Some kids are harder to treat than others though generally they all have ups and downs. They all get better but some do take longer than others. This is why Dr. G has been adamant about getting the research going on the new drugs. There is no question that the protocol works. It is all some kids will need but others, such as yours, and definitely mine need that and more! The issue here is how dysfunctional is the immune system. These kids all have the same system problems but the degree varies greatly. Kathy -NNY Quote
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