Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 Dear Mark, Greetings from Australia! I was misdiagnosed for 22 years. I have many similar symptoms to you. I was told it was Chronic Fatigue Syndrome, Fibromyalgia, depression, anxiety, etc, etc. Thanks to this rheumatic group I found out that what I really have is Lyme disease. Lyme is initailly caused by a tick bite. But then it can be sexually transmitted, contrary to popular belief. It is unfortunately similar to Syphilis and can effect every organ in the body, particularly the brain and nervous system. (Yuk!) Have you ever been bitten by a tick? Do you live in a known tick area? Have you ever noticed any strange " bulls-eye " type rashes? You could answer no to all of these questions and still have Lyme. To further complicate things, the tests are not very accurate, but if you do test positive, it means you probably have it. Unfortunately there is a lot of controversy about Lyme and many of the doctors are extremely ignorant on the facts. Please do not let your doctor fob you off on this. At least get him to test you. If he is not helpful look for another doctor. If you have Lyme you will need support, not a fight. Ask this group for a good doctor in your area. Mark hang in there. You will get a lot of help from this group. Take care, Rosemary. rheumatic What else can i do? > Greetings to everyone in this outstanding group. This is your friend > Mark(new to group). I would just like to give a thanks to everyone > that responded to my previous message, " Please help me " . I will > continue to take everyones advice and spread the word to friends > about how simple changes in treatment could possibly aid in a much > more healthy life. > In my long journey to treatment i'm still at this amazing brickwall > of not being diagnosed. My goal in writng this breif message is to > perhaps enlighten everyone about blood test results i recieved > earlier this month. Maybe someone can kinda look them over and > compare them with some of there own. Then i could probably find a > physician in Atlanta GA. that will be more familiar with signs and > symptoms of a particular disease that i could be suffering from. > rheumatoid factor/8,cpk/488(sometimes lower and i don't > workout),sedimentation/12,aldolase/11.1,glucose/122,ast/53.Muscle > biopsy taken and currently pending results. Never had an MRI! > Day to Day symptoms: Muscle aching burning sensation(bones in feet > popping), swollen feet(hard skin), blurred vision, hard to walk(keep > balance), increased saliva in mouth, brain burn(on celexa but makes > me tired and memory loss), uncontrollable weight gain, hard to > swallow somtimes, weak knees, muscle twitching, body inflammation > arm@shoulder area also around waist, very tired all day. > Hopefully once my muscle biopsy test return in full the doctor can > tell me whats going on. I really hate this doctor because it's not > just the not knowing, but the attitude he's taking toward my well > being is really pissin me off(excuse my french)(lol)! I'm just try to > take all this in stride and not give up. I dream of a day when i can > be free of all this body pain and get on with my life. this > disfunction has really made me realize how wonderful nature is and > for some strange reason i would like to be apart of it. I must end > this now, my hands are beginning to get that weak burning feeling, > time to rest them. > I am so glad i found this wonderful group and actually this maybe the > group that will aid me in obtaining a healthy life again. > > I have 1 question. Will your body eventually become immune to the > antibiotics? is that why some people come out of remission? > thanks for reading........Mark > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hi Mark, On Monday, October 21, 2002, at 12:49 PM, Numero Uno wrote: >Then i could probably find a physician in Atlanta GA. that will be more familiar with signs and symptoms of a particular disease that i could be suffering from. We have this doctor listed in Atlanta - also others in Georgia: B. Edelson, M.D. - FP - 1967 Environmental and Preventive Health Center of Atlanta, 3833 Roswell Rd., Room 110 Atlanta, GA 30342. P: 404-841-0088. >I have 1 question. Will your body eventually become immune to the antibiotics? is that why some people come out of remission? Antibiotic resistance can creep in after four or five years on the same antibiotic. So the antibiotic is often rotated after this period - there are quite a number of antibiotics which can be used for this therapy. Many people here never got a definite diagnosis. Luckily these diseases are treated in a similar way, so even if your diagnosis is incorrect, the treatment is the same. Let us know how we can help. Chris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2011 Report Share Posted March 16, 2011 I think it would be important for you to get on a thyroid supplement.......and adrenal? Do you have anyone in your area that can help you with this at a health food store......but not a GNC or a place like that......the thyroid would help you get your body temp up and help with energy.......I think its a raw thyroid supplement that you need but please check with someone who knows at the store - I think they keep it behind the desk - thyroid 120 or something like that....... Diane ________________________________ From: Aline Huey <alinehuey@...> Sent: Wed, March 16, 2011 7:28:12 AM Subject: [ ] What else can I do?  I am seeing a Lyme doctor who just put me on a second (additional)antibiotic (Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a few other vitamins. I take hot baths. I can't get my body temp up. When I did the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and still doesn't. What other suppliments will help? Teasel? I am having a difficult time getting exersize as the weather is not warmed up much here in central Pa. I am looking for things that are working for other people. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2011 Report Share Posted March 16, 2011 It sounds like you might want to get your thyroid checked by thyroid-literate doctor. Thyroid disease is a lot like Lyme in that there are some heretic doctors who do a wider range of labs and read them more narrowly, and therefore will treat more aggressively. (The book on this is " Thyroid Power " by Dr. Shames; see also the about.com thyroid pages edited by Shomon. There are websites that will point you to good thyroid docs in your area.) Many LLMDs are also thyroid-literate, and will work with you on this. There are different types of thyroid disorder. Most doctors will try to put you on synthroid, but the kind of thyroid problems we find in Lyme tend to respond better to Armour or other dessicated thyroid. Insist on this. An estimated 90% of Lyme patients have thyroid disruption as one of their issues. It's responsible for a lot of what ails us, and taking thyroid meds can make you feel massively better even in the absence of a cure. Interestingly, my need for thyroid meds was one of the first things that went away when the drugs started working. Your low body temps are classic indicators of a thyroid on the fritz. Ask your LLMD to check this out. Sara On Mar 16, 2011, at 5:28 12AM, Aline Huey wrote: > I am seeing a Lyme doctor who just put me on a second (additional)antibiotic (Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. > I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a few other vitamins. I take hot baths. I can't get my body temp up. When I did the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and still doesn't. > What other suppliments will help? Teasel? > I am having a difficult time getting exersize as the weather is not warmed up much here in central Pa. > I am looking for things that are working for other people. > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2011 Report Share Posted March 16, 2011 Thanks Sara - I knew someone would know more then me......but I did want her to go a direction for her thyroid.......thanks for always helping us  Diane ________________________________ From: Sara <srobinson@...> Sent: Wed, March 16, 2011 12:00:21 PM Subject: Re: [ ] What else can I do?  It sounds like you might want to get your thyroid checked by thyroid-literate doctor. Thyroid disease is a lot like Lyme in that there are some heretic doctors who do a wider range of labs and read them more narrowly, and therefore will treat more aggressively. (The book on this is " Thyroid Power " by Dr. Shames; see also the about.com thyroid pages edited by Shomon. There are websites that will point you to good thyroid docs in your area.) Many LLMDs are also thyroid-literate, and will work with you on this. There are different types of thyroid disorder. Most doctors will try to put you on synthroid, but the kind of thyroid problems we find in Lyme tend to respond better to Armour or other dessicated thyroid. Insist on this. An estimated 90% of Lyme patients have thyroid disruption as one of their issues. It's responsible for a lot of what ails us, and taking thyroid meds can make you feel massively better even in the absence of a cure. Interestingly, my need for thyroid meds was one of the first things that went away when the drugs started working. Your low body temps are classic indicators of a thyroid on the fritz. Ask your LLMD to check this out. Sara On Mar 16, 2011, at 5:28 12AM, Aline Huey wrote: > I am seeing a Lyme doctor who just put me on a second (additional)antibiotic >(Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. > > I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a >few other vitamins. I take hot baths. I can't get my body temp up. When I did >the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and >still doesn't. > What other suppliments will help? Teasel? > I am having a difficult time getting exersize as the weather is not warmed up >much here in central Pa. > I am looking for things that are working for other people. > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2011 Report Share Posted March 17, 2011 What is your diet like? For me it was very important. I did not eat gluten, soy, caffeine, alcohol, sugar (or any other sweeteners including honey, maple syrup, artificial sweeteners or fruit). I probably should have given up dairy too but I didn't. I was on Doxy for 2-3 months but it made me so sick to my stomach I couldn't tolerate it so my LLMD switched me over to Amox and Flagyl. I did take Teasel root and also colloidal silver and several other supplements and meds but all as instructed by my LLMD. I was on oral antibiotics a total of 11 months. Have been off all meds 7 months and have not relapsed. Carol > > I am seeing a Lyme doctor who just put me on a second (additional)antibiotic (Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. > I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a few other vitamins. I take hot baths. I can't get my body temp up. When I did the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and still doesn't. > What other suppliments will help? Teasel? > I am having a difficult time getting exersize as the weather is not warmed up much here in central Pa. > I am looking for things that are working for other people. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2011 Report Share Posted March 17, 2011 Thank you Sara and Diane. I had bloodwork done but the lab didn't catch the thyroid test so when I saw my LLMD he was concerned enough to order another test that I will get done April 2. I walked about three miles this morning and took my temp right after and it was 95.5. It makes sence to me, so I will persue. > > I think it would be important for you to get on a thyroid supplement.......and > adrenal? Do you have anyone in your area that can help you with this at a > health food store......but not a GNC or a place like that......the thyroid would > help you get your body temp up and help with energy.......I think its a raw > thyroid supplement that you need but please check with someone who knows at the > store - I think they keep it behind the desk - thyroid 120 or something like > that....... > Diane > > > > > ________________________________ > From: Aline Huey <alinehuey@...> > > Sent: Wed, March 16, 2011 7:28:12 AM > Subject: [ ] What else can I do? > >  > I am seeing a Lyme doctor who just put me on a second (additional)antibiotic > (Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. > > I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a > few other vitamins. I take hot baths. I can't get my body temp up. When I did > the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and > still doesn't. > What other suppliments will help? Teasel? > I am having a difficult time getting exersize as the weather is not warmed up > much here in central Pa. > I am looking for things that are working for other people. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2011 Report Share Posted March 17, 2011 Does you LLMD work with supplements? Because my test from reg tests have always been low " normal " range so my reg doc will not treat me for hypo - that is why I get the raw thyroid and cant live without it Good luck and don't be so cold!! You should live in the tropics......I know when I use to have low temp winter would just hurt ...... the cold would go right though my bones............ Diane ________________________________ From: Aline Huey <alinehuey@...> Sent: Thu, March 17, 2011 10:49:08 AM Subject: [ ] Re: What else can I do?  Thank you Sara and Diane. I had bloodwork done but the lab didn't catch the thyroid test so when I saw my LLMD he was concerned enough to order another test that I will get done April 2. I walked about three miles this morning and took my temp right after and it was 95.5. It makes sence to me, so I will persue. > > I think it would be important for you to get on a thyroid supplement.......and > adrenal? Do you have anyone in your area that can help you with this at a > health food store......but not a GNC or a place like that......the thyroid >would > > help you get your body temp up and help with energy.......I think its a raw > thyroid supplement that you need but please check with someone who knows at the > > store - I think they keep it behind the desk - thyroid 120 or something like > that....... > Diane > > > > > ________________________________ > From: Aline Huey <alinehuey@...> > > Sent: Wed, March 16, 2011 7:28:12 AM > Subject: [ ] What else can I do? > >  > I am seeing a Lyme doctor who just put me on a second (additional)antibiotic > (Amoxycycline) after doing three months of Doxycycline 200mg 2 times a day. > > I have been doing probiotics, milk thistle, vitamin D, Magnesium, as well as a > few other vitamins. I take hot baths. I can't get my body temp up. When I did > the 6 weeks of IV Rocephin (November 2010)my temp rarely went over 96.8 and > still doesn't. > What other suppliments will help? Teasel? > I am having a difficult time getting exersize as the weather is not warmed up > much here in central Pa. > I am looking for things that are working for other people. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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