in my jaded opinion, one of the biggest problems we are dealing with are the results of good for nothing dr allen steer and his goons. when he ramroded the lymrix vaccene thru fda and other medical qualifiers they had to reverse there position on the severity and diversity of lyme in general when it backfired. this is supported by what gov potackey of ny did to a recent lyme dr support bill. this peace of law was receiving unanimous support untill it reached the govs desk and was vetoed due to pressure from "in the box drs". i have dxs pos in all forms of testing including pcr and have been on abx over 30 months and will continue to trust my llmd with my future.
I too have found the Lyme disease to be extremely frustrating. I have an excellent Dr who was upfront when he said there is no test to prove that you have Lyme or conversely that it is cured. That translates that the medical establishment is guessing of how to combat and in some cases ignore the disease.
So what can I do? Well, I I have tested positive. I am seeing a great LLMD. I am also taking supplements. I am exploring alternative methods e.g. Modern Chinese medecine to build the immune system. I also try to let anything go that can effect my immune system like ANGER & RESENTMENT. I read Healthboards most every day.
I have been duped by false promises for cures. For example the Chinese Dr said forget Western medicine. The antibiotics will damage your liver in the dosage and length of time you are taking them. But lamata77 in this posting says the PCR test that the Chinese Dr uses to prove his cure for Lyme is unreliable for long term cases. I have had my battle with the doctors billing staff & insurance. After 4 weeks of therapy a nurse called and said we are cancelling me as a patient. I asked why. Becasue your health insurance will no longer cover the cost. Lawyers are a whole other topic. It is frustrating!
Both you and lamata77 have also stated that you question wether you have an active case of Lyme. That is a question that I also struggle with. Before Lamata77 mentioned the unreliablity of the PCR test, I was going to switch to the Chinese medicine.
And so we struggle to find a way to cope.
Ozarka, I've read that you have ovarian problems and high fibrin levels and you were told that these could have been caused by Lyme Disease. First, I've never heard a single account of Lyme Disease causing either ovarian problems or high fibrin levels, but I guess some doctors feel they can attribute a suspected Lyme Disease infection to every single health problem you have. It's a very narrow minded point of view in my opinion and I would be just as skeptical as you are about it. You wrote that high fibrin levels were proven to have been caused by Lyme Disease "by several other lyme special tests." What are these tests you speak of because I've never heard of any Lyme Disease test involving fibrin level tests in them? I would listen to your ID in this matter--An erythrocyte sedimentation rate is a test to show inflammation in the body which is very useful to detect the possible presence of an infection or rheumatoid arthritis. If this is low, there is a great chance that fibrin levels should be low as well---high fibrin would cause the red blood cells to stick together causing a high sedimentation rate. My sincere opinion would be to get these issues checked by other doctors and be very weary of anyone who tries blame all conditions and symptoms on Lyme Disease. That sounds like witch hunting to me! Don't be fooled and always explore other possibilities. Also, if you do decide to start on antibiotics, I wouldn't worry about them doing any harm to your immune system. It is true that using IV Rocephin can wipe out white blood cells, but it is rare and completely reversible. In your case, I would even think about using IV meds anyway. Just make sure you have all your blood work checked often to make sure everything is ok. About strengthening the immune system, there isn't anything to my knowledge that is proven to do this. There, of course, are TONS of supplements claiming they can strengthen immune system, but many of them are scams so be careful. You CAN make sure that your body has all the raw materials it needs to funtion properly by taking all your vitamins and minerals, eating right, and avoiding alcohol and caffeine. A particular product getting attention now is undernatured whey protein because it was proven to boost glutathione levels which are essential to proper functioning...There is a lot of evidence that people who suffer from chronic conditions are depleted of glutathione. Do a search and read about it.
Samaya35, so this Chinese doctor of yours lied to you about using PCR to prove a cure when there isn't even such a thing? The test would most likely show up negative anyway...what a scam! And he told you to abandon Western Medicine as well? Hmmmm...does he sound like the kind of doctor you can trust with your health? I wouldn't think so...That is such a shame this guy scammed you like that. That guy should be locked up! Thanks for sharing that story and I'm glad I could help.
How do you know if you have active lyme? If there are no medical tests, why in the world, I've got to ask myself, would I even bother going on the antibiotics and heparin to thin my blood?
I agree...lots of quackery out there in the alternative community. Many folks think they can help but always seem to promote whatever they're selling or whatever expresses their expertise. I've tried acupuncture to restore my ovaries--no luck. I tried a colon cleanse--made me extremely ill and so on and so forth
I've spent enough that I could have flown to Fiji for a month, drank pure water and relaxed and accomplished as much.
The one thing that I feel might indicate if one should/should not treat with antibiotics is the Bowen test which sees the actual bug in your blood, but even that is highly suspect and considered down-right bogus by many. So I'm nearly to the point of doing nothing. Just let it go as long as I feel good.
Thanks for your responses and hope you are feeling okay.
thanks so much for your insights. I didn't explain the 'fibrin' thing too good so looked up my notes from the doctor.
THe Bowen test showed coagulation problems (sticky red blod cells sticking together) but I had a seperate test for fibrinogen which was slightly elevated and "soluble fibrin monomer" which was 36 when it should have been in a range from 0-17. This 'hypercoagulation' thing is, I was told, common with lyme as its indicative of an inflammatory process. The inflamation may come from parasites, toxins or infections. Thus we also tested for parasites and toxins etc.--all okay. (somehow lyme was the next alternative). . Though my Lyme DNA by Qualitiative PCR was negative, my bowen test was off the charts. Also, doesn't plasminogen activator, inhibitor 1 being elevated indicate inflammation more than the sed rate?
Anyhow, this is all of it in a nutshell. Your insights are greatly appreciated as you seem to have a good grasp of medical stuff.
The reason that I have been on IV therapy is a complete trust in Western medicine. The results of 2 "scientific tests" Elsia and Western blot with all those confusing bands seemed to be indisputable evidence that I had Lyme disease.
To collect some more information, I attended a Lyme support group. I saw the serious effects of the disease. Got really scared and started this aggressive therapy.
The therapy has had positive results. My brain is funtioning again. Neck pain and headache gone. Joint pain in my knees has gone. The only remaining symptom is a constant ringing in my ears.
Now a question that will be raised today is whether insurance will cover more antibiotic treatment. The alternative is to come up with about $80,000.00 to continue on my own.
I try not to let this totally Stresssss me and my poor immune system. So off I go on my plane trip to the Dr today.
given that you were having these symptoms I think the agressive treatment was a good choice. My llmd however doesn't even do IV as he said that taking the medicine by pills was just as effective. Possibly you could save some money if you went in this direction.
Curious, have you been tested as a strep carrier? Some ofyour symptoms seem to me to suggest this based on what Im reading but I'm no doc, just a searcher.
If you were asymptomatic except for a blodo coogulation issue such as myself (purportedly caused by lyme) do you think you would have also done the treatments?
I think going to hte local lyme association meetings in my own hometown would helpme a lot so thanks for all this info.
Ozarka, I have read an article written by a researcher a while back about Borrelia B. It does seem that the bacteria can bind plasminogen which will activate plasmin---there is some truth to that. Now, whether or not you can use this value to diagnosis a Lyme Disease infection is another story---I've never heard such a thing being done. I guess that is because it could be elevated for any number of reasons and all of them must be ruled out.
Oh yes, and about using inflammatory markers for a diagnosis---just because they are present doesn't necessarily mean an infection is still live. Sometimes these markers will stay elevated for long periods of time due to the trauma of the infectious process.